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In a panic – CT results sent to me over weekend with abnormalities

Forums General Melanoma Community In a panic – CT results sent to me over weekend with abnormalities

  • Post
    Leigh
    Participant

    Hi all,

    I would really appreciate any help/experience as I am in a complete panic.  I have been sent CT results to my home address without my surgeon being notified and he does not want to discuss them with me over the phone over the weekend without seeing them himself.  I can see his point but I feel sick to my stomach and need to find information quickly.

    Hi all,

    I would really appreciate any help/experience as I am in a complete panic.  I have been sent CT results to my home address without my surgeon being notified and he does not want to discuss them with me over the phone over the weekend without seeing them himself.  I can see his point but I feel sick to my stomach and need to find information quickly.

    My background is that I was diagnosed early December with a 0.83mm, non ulcerated, no mitoses, Clarkes IV melanoma, no lymphvasc invasion, on my foot, WLE performed and SLNB was negative.  About 2 weeks after the operation I started feeling discomfort in my leg which seemed consistent with lymphatic obstruction, achy feeling with upper groin discomfort.  My leg was 3cm larger than the other and I did have an infection in the wound site so that was that.

    The upper groin ache has continued though with no enlargement on measurements and ache went to deeper in my pelvis on that side (not terrible just obvious discomfort).  The surgeon felt this was related to surgery and didn't advise tests.

    I sought a second opinion about the tests and we went ahead with a CT on Friday.  I have just got the results in the mail today (Sunday) as hadn't checked the letter box.  I am in a panic about what these mean – my GP says it could just be a red herring but I am not sure as it is the lymph nodes that are changed.

    Please if anybody has had this happen to them and it has all turned out fine write back!  The comment is "a few small lymph nodes are identified in the groin, retroperitoneum and porta hepatis.  These are not involved by size criteria, however consideration for PET scan should be considered"  The nodes are 11m, 10mm and otherwise less than 10mm.  (Incidentally they found "most likely a haemangioma" in my liver).   Could this be a red herring, could it be nothing.  It seems unbelievable as the sentinel lymph node was negative and the surgeon was very confident that he got the correct one.

    I have an almost 3 year old and 6 month old baby and I cant bear to think about what this might mean for our family.

     

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  • Replies
      Janner
      Participant

      I think you are reading into things….  lymphedema, which you've said you have, could cause some of the groin issues you've been describing.  You can have nerve damage and scar tissue from the SNB which could easily explain your discomfort.  It would be more helpful if you could include the entire report, however.  It's hard to get the whole picture when you just pick out certain phrases.

      The comment is "a few small lymph nodes are identified in the groin, retroperitoneum and porta hepatis.  These are not involved by size criteria, however consideration for PET scan should be considered"

      Is there more information?  Just identifying lymph nodes that are 'not involved by size criteria' doesn't give us much information to go on.  They're specifically looking at the groin area and they identify nodes there.  That's what you'd expect. They are not enlarged which would be of more concern.  I think you should just take a deep breath and wait for your doctor's comments.  Surgical changes can cause problems on any scan (PET included) and nothing you've typed seems to be indicative of any real problems. Oh, and hemangiomas are very common on the liver and the CT report is likely to be correct on that score.

      In the future, it might be best to read the reports after you talk to your doctor.  Then your imagination doesn't get a workout and you know exactly what you are dealing with.  These reports call out EVERYTHING and just because it is called out doesn't mean it is something to worry about. 

      Best wishes,

      Janner

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        Leigh
        Participant

        Hi Janner, thanks so much for responding so quickly. I really appreciate it.

        I definitely wasn't meant to get sent the report, I think there has been a big mix-up, and I had to read it as it was in the letterbox and was very worried about what it might say.

        The full results were:

        Chest: nil found

        Abdo/Pelvis: Pancrease,spleen, kidneys normal.  There is an 11m (short axis diametre) lymph node at the porta hepatis. Small nodes are seen in the retroperitoneum which measure no more than 10mm in short axis diameter.  There are several small lymph nodes in both inguinal regions, the largest measuring 10mm on the left. 

        No evidence of collection, no cause for pt discomfort, left hip join in particular normal. No evidence bony destruction.

        The comment was as I already wrote.

        I have just read (possibly – I need to check this) that lymph nodes >10mm are considered enlarged and perhaps this is why they are looking at PET/CT. 

        I really appreciate your comments.

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        Leigh
        Participant

        Hi Janner, thanks so much for responding so quickly. I really appreciate it.

        I definitely wasn't meant to get sent the report, I think there has been a big mix-up, and I had to read it as it was in the letterbox and was very worried about what it might say.

        The full results were:

        Chest: nil found

        Abdo/Pelvis: Pancrease,spleen, kidneys normal.  There is an 11m (short axis diametre) lymph node at the porta hepatis. Small nodes are seen in the retroperitoneum which measure no more than 10mm in short axis diameter.  There are several small lymph nodes in both inguinal regions, the largest measuring 10mm on the left. 

        No evidence of collection, no cause for pt discomfort, left hip join in particular normal. No evidence bony destruction.

        The comment was as I already wrote.

        I have just read (possibly – I need to check this) that lymph nodes >10mm are considered enlarged and perhaps this is why they are looking at PET/CT. 

        I really appreciate your comments.

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      Janner
      Participant

      I think you are reading into things….  lymphedema, which you've said you have, could cause some of the groin issues you've been describing.  You can have nerve damage and scar tissue from the SNB which could easily explain your discomfort.  It would be more helpful if you could include the entire report, however.  It's hard to get the whole picture when you just pick out certain phrases.

      The comment is "a few small lymph nodes are identified in the groin, retroperitoneum and porta hepatis.  These are not involved by size criteria, however consideration for PET scan should be considered"

      Is there more information?  Just identifying lymph nodes that are 'not involved by size criteria' doesn't give us much information to go on.  They're specifically looking at the groin area and they identify nodes there.  That's what you'd expect. They are not enlarged which would be of more concern.  I think you should just take a deep breath and wait for your doctor's comments.  Surgical changes can cause problems on any scan (PET included) and nothing you've typed seems to be indicative of any real problems. Oh, and hemangiomas are very common on the liver and the CT report is likely to be correct on that score.

      In the future, it might be best to read the reports after you talk to your doctor.  Then your imagination doesn't get a workout and you know exactly what you are dealing with.  These reports call out EVERYTHING and just because it is called out doesn't mean it is something to worry about. 

      Best wishes,

      Janner

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      lhaley
      Participant

      Leigh,

      While I can't tell you what you ct scan results mean it does sound to be inconclusive, that's why they are requesting a PET.  You mention talking to your GP. If there are any suspicions you need to get to a specialist that can look at the scans themselves and add their opinion to it.

      I'm guessing that this is your first CT.  We all have abnomilies in our body that often don't mean anything. Hopefully that is the case with yours.  It does seem odd that this has all occured after the SNB.  I recently had some nodes removed. Since that time I have had some really strange reactions that right now the Drs. are thinking is that the lymphatic system was damaged in the area. It's now been a few months and slowly things are getting better.

      Because you mentioned that it is Sunday I'm assuming you are from a country other than the US. I'm really surprised that your results were mailed to you, especially if there was anything that needed to be discussed.

      Take a deep breath and unfortunately you will have to wait till Monday morning. You might want to leave a message on your surgeons answer service that you would like either a call early Monday or an appointment to review this information.

      Let us know,

      linda

      Stage IV since 06

      stable

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        Leigh
        Participant

        Thanks Linda for your reply.  Yes it is my first CT and as I mentioned there has definitely been a mix-up with sending me the results (including the films!) over the weekend.  I spoke with the surgeon over the phone an hour or so ago but he did not want to comment as he didn't have the scans and wanted to consider them and what to do before discussing it with me.  I think that is fair enough as he doesn't want to say something off the cuff and then have to retract it.  I'll see him tomorrow afternoon after his operating list.   I then rang the GP to see what her take on it was and she felt usually these things are red herrings, but didn' tknow anything about lymph node sizes etc.  I'm not sure how lymph node changes can be red herrings in these situations though.  This whole thing has been exhausting and I just wish I weren't in this situation.  Its fair to say I am not coping well, my baby and toddler are up all night and I barely get 1 hour sleep before being woken up so I am running on empty at the moment.

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        lhaley
        Participant

        You said that you recently had an infection. The nodes could still be enlarged from that!  I am glad that both of your Doctors are responsive to you and talked to you on the weekend!  Nodes can be enlarged for many reasons.

        Go hug those babies and try to not think about this until you are in the Surgeons office.  Make sure and take someone with you to help you remember everything that was said.  You are already stressed and we often miss much of the conversation. 

        Linda

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        lhaley
        Participant

        You said that you recently had an infection. The nodes could still be enlarged from that!  I am glad that both of your Doctors are responsive to you and talked to you on the weekend!  Nodes can be enlarged for many reasons.

        Go hug those babies and try to not think about this until you are in the Surgeons office.  Make sure and take someone with you to help you remember everything that was said.  You are already stressed and we often miss much of the conversation. 

        Linda

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        Janner
        Participant

        You say "lymph node changes".  But… since this is your first CT, how do you know they have changed?  All this could be normal for you.  All it says to me is they don't have a good explanation for your groin discomfort from the CT films.  And scaring and lymphedema and nerve damage could all cause discomfort.  All are surgically related.  The nodes aren't abnormally sized as specified in the comments.  1cm is about normal for most nodes, but some can be smaller or larger.  It's not like "this node is 11mm so it is cancer".

        Lymph nodes can be different sizes and it is not uncommon to have them swell as a result of infection or trauma.  You've recently had both with surgery being the trauma.  You can also get reactive nodes.  Reactive nodes swell for some reason, then they never return to their normal size.  Truthfully, the CT sounds reasonably normal to me.  Many times they will call out issues to CYA (cover your butt). 

        Post back with what your surgeon says, but again I wouldn't be stressing this.  It all sounds relatively benign.

        Best wishes,

        Janner

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        Leigh
        Participant

        Hi Janner,

        thanks for your response again.  I have just been speaking with my pathologist friend and she has been very reassuring…actually mentioned pretty much all that you have in your post including CYA.  (Are you a doctor?)  She felt that I need to consider how far to get into this actually – PET/CT, possibly biopsy, maybe leading to more surgery if the node is reactive etc etc.  I have no idea why they are commenting on all the nodes if 1cm is about normal for most nodes! Are nodes always seen on CT – I dont know why they are commenting on them otherwise.

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        Janner
        Participant

        No, I'm not a doctor, just an informed consumer.

        A PET/CT can be a mixed blessing.  Since your surgery is relatively recent, a PET scan will likely show increased uptake in the area.  It would be difficult to differentiate surgical changes from anything else at this point. It could look at the other lymph nodes not directly in the surgical area, but unless there is real reason to suspect melanoma has spread beyond the groin, I probably wouldn't go there.  PET scans are expensive and notorious for both false positives and false negatives.  It adds to the picture but isn't definitive.

        In general, the reason they don't scan stage I individuals is for many of the things you are going through.  False positives.  You see something, you have to watch it and scan again in a couple of months or biopsy.  Most of us have benign beasties inside and scanning them means we have to figure them out.  They call out lymph nodes on the CT specifically because you have a history of melanoma and lymph nodes are a typical path of metastases.  Calling them out doesn't mean much if they say they are normal size (which is what I read).  Noting the size can also be of benefit as a baseline.  So if they chose to scan you again in 3 months, you would have the node sizes (and previous films) for comparison. 

        Good luck,

        Janner

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        Leigh
        Participant

        Thanks for your help today, it has really made a difference.  I have just been looking at some articles and 1cm is the upper limit of normal for nodes in this area, but size isn't a particularly good indicator as smaller nodes may contain melanoma and larger ones may just be normal size for you. 

        I'm not sure about the PETCT either – I had a C-section 6 months ago and the SLNB/WLE 3 months ago so I am concerned about what that information will show with false positives. 

        I wonder now whether I should have had the SLNB in the first place as it didn't yield any information, potentially caused pain and discomfort leading to the CT, now possibly a PET and on and on.  It is a rollercoaster of intervention that may potentially be of no benefit in the end.

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        Carol Taylor
        Participant

        Leigh,

        I'm just catching up on this conversation.  Take a deep breath.  I know you're running on empty and scared, you've got those two little ones to think about. Got it.

        Now, you are on a roller coaster, but don't start second guessing yourself and playing the "what if" game and going down the "If only I hadn't Road." None of us can go back and undo any choices.  You make the best choice you can at the time and live with whatever the outcomes are nd keep going.  It's like that in anything in life.

        Do make plans to take someone close to you on all future appts beginning Monday and make sure they go in every room you go in. Not only to hear everything, but for your own moral support. I recommend your husband/boyfriend, someone who lives with you as that person will be more actively involved.

        Right now, my friend, have you got someone who can watch your children so you can get some sleep and take a walk and get a good meal?  You've got to take care of yourself and you'll need someone to help you do that.  Make use of those close to you.

        Tomorrow will be here soon enough. Get through today and clear your head. You can do this.

        Grace and peace,

        Carol stage 3b (with lymphedema)

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        Lisa13
        Participant

        Hi Leigh,

        I have a 17 month old daughter  so I completely understand your fears and panic.  I had a huge swollen lymph node in my groin when I was diagnosed and an ultrasound suggested it was just an infection. My surgical oncologist felt them and said it was cancer and I freaked.   I had 2 biopsey's taken and they were shocked to find out they wern't cancerous – just my own immune system fighting the melanoma.  After a PETscan before surgery, 1 lymph node lit up which was cancer, but it was not the biggest node.  I had 19 lymph nodes in my groin removed 5 weeks ago and no signs of lymphedema.

        Everyone here has gone through or is going through what you are experiencing and I know it's hard not to read into the results, what if's, symptoms, etc.  At this point, you have to look after yourself and remain positive, no matter what.  I spent 2 weeks crying because I was so scared not to be able to watch my daughter grow up, but I was getting ahead of myself and now I chose to enjoy my life and remain hopeful.

        Take a deep breath, go to your appointments, get your tests done and deal with the results as they come in. It may or may not be anything serious.

        Be strong!

        Lisa – Stage 3c 

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        Vermont_Donna
        Participant

        Dear Leigh,

        You have received excellent responses to your post above. I am sorry that you were inadvertantly sent the test results before your doctor had a chance to see them. Of course it seems like these things happen on a weekend! But look at the bright side, now you have some clarification on some things and can make a list of questions to explore with him when you see him based on the replies to your post.

        I wanted to ask a question and make a comment. Maybe I missed this but where was your SNB?? My comment is that you said you had some lymphadema issues…….this can result in "plugged" or swollen nodes, full of lymph fluid. A SNB and also a lymph node dissection can really disrupt the flow of lymph fluid (lymph fluid flows UP). Did you see a lymphadema specialist…usually a physical therapist who has special training in managing lymphadema? Did you learn how to do the self massage for lymphadema?? This is so helpful to keeping lymph fluid moving. I had a deep ache in my right lower abdomen once and my lymphadema specialist showed me how to "clear" the nodes in the area…it was amazing that with her lymphadema massage, that area of discomfort went away!! When it came back I knew how to do the massage mysself and again it went away.

        It is easy to go into panic mode with melanoma, and we have all been there. But take a deep breath, dont read too much into anything until you see the doctor and discuss with him your results, and he will take into consideration the surgeries you have had, etc. When faced with the diagnosis of a potentailly serious illness, it makes all of us desparate to hang onto life, for our children especially, but for all our loved ones. We should live each day fully and well. You will see that you can LIVE life with a melanoma diagnosis.

        Please come back to this board and let us know how things go.

        Vermont_Donna

        stage 3a

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        Leigh
        Participant

        Thanks Donna for your note.

        I had the melanoma on my left foot and the SLNB in the left groin area.  I did see a lymphoedema specialist which did make quite a difference with the massage, it was fixed by afew massages and then I stopped doing them as I read somewhere here it could spread mets!  (I didn't look into this too much at the time and I dont know if there is anything to this).  I went back a couple of weeks later and the legs were the same size despite not doing the massage so I haven't resumed it.

        I wrote earlier about how my appt went – I have a second appt in a couple of days with my original surgeon to see what he thinks.  Hope he isn't too upset with me for going elsewhere and having a CT…oh well.

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        Vermont_Donna
        Participant

        Leigh,

        Lymphadema is no fun and I have extensive problems with it, have had extensive lymph drainage massage over the last 4.5 years and had leg wrappings, etc, now wear a compression stocking all day and a nighttime compression garment. My doctor who is a melanoma oncologist and my lymphadema speciaIist both have agreed that the lymphadema massage treatment was essential to my health and well being and they both agreed the risk of "spreading" melanoma because I have intransit mets was really low and not an issue they were worried about.

        I would wonder if you may have some full lymph nodes even though your leg size is back to normal?? You have disrupted the lymph flow somewhat by having a SLNB, and perhaps the C-section as well. Perhaps a referral to you lymphadema specialist for a consultation and perhaps some more treatments??

        As far as the results after seeing your doctor today, I think Janner is right on. Take some deep breaths, as you are in panic mode. You have time, no need to make hasty decisions today.

        Vermont_Donna

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        Vermont_Donna
        Participant

        Leigh,

        Lymphadema is no fun and I have extensive problems with it, have had extensive lymph drainage massage over the last 4.5 years and had leg wrappings, etc, now wear a compression stocking all day and a nighttime compression garment. My doctor who is a melanoma oncologist and my lymphadema speciaIist both have agreed that the lymphadema massage treatment was essential to my health and well being and they both agreed the risk of "spreading" melanoma because I have intransit mets was really low and not an issue they were worried about.

        I would wonder if you may have some full lymph nodes even though your leg size is back to normal?? You have disrupted the lymph flow somewhat by having a SLNB, and perhaps the C-section as well. Perhaps a referral to you lymphadema specialist for a consultation and perhaps some more treatments??

        As far as the results after seeing your doctor today, I think Janner is right on. Take some deep breaths, as you are in panic mode. You have time, no need to make hasty decisions today.

        Vermont_Donna

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        Leigh
        Participant

        Thanks Donna for your note.

        I had the melanoma on my left foot and the SLNB in the left groin area.  I did see a lymphoedema specialist which did make quite a difference with the massage, it was fixed by afew massages and then I stopped doing them as I read somewhere here it could spread mets!  (I didn't look into this too much at the time and I dont know if there is anything to this).  I went back a couple of weeks later and the legs were the same size despite not doing the massage so I haven't resumed it.

        I wrote earlier about how my appt went – I have a second appt in a couple of days with my original surgeon to see what he thinks.  Hope he isn't too upset with me for going elsewhere and having a CT…oh well.

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        Vermont_Donna
        Participant

        Dear Leigh,

        You have received excellent responses to your post above. I am sorry that you were inadvertantly sent the test results before your doctor had a chance to see them. Of course it seems like these things happen on a weekend! But look at the bright side, now you have some clarification on some things and can make a list of questions to explore with him when you see him based on the replies to your post.

        I wanted to ask a question and make a comment. Maybe I missed this but where was your SNB?? My comment is that you said you had some lymphadema issues…….this can result in "plugged" or swollen nodes, full of lymph fluid. A SNB and also a lymph node dissection can really disrupt the flow of lymph fluid (lymph fluid flows UP). Did you see a lymphadema specialist…usually a physical therapist who has special training in managing lymphadema? Did you learn how to do the self massage for lymphadema?? This is so helpful to keeping lymph fluid moving. I had a deep ache in my right lower abdomen once and my lymphadema specialist showed me how to "clear" the nodes in the area…it was amazing that with her lymphadema massage, that area of discomfort went away!! When it came back I knew how to do the massage mysself and again it went away.

        It is easy to go into panic mode with melanoma, and we have all been there. But take a deep breath, dont read too much into anything until you see the doctor and discuss with him your results, and he will take into consideration the surgeries you have had, etc. When faced with the diagnosis of a potentailly serious illness, it makes all of us desparate to hang onto life, for our children especially, but for all our loved ones. We should live each day fully and well. You will see that you can LIVE life with a melanoma diagnosis.

        Please come back to this board and let us know how things go.

        Vermont_Donna

        stage 3a

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        Leigh
        Participant

        Thanks Lisa, this is just such a crappy thing to have to face, especially with young children.  As soon as I got those results in the mail I immediately was so worried for them.  It doesn't feel like this is really about me and my life, but my children's.  It is like a bad dream. 

        I am told by so many people not to look at the internet but if I didn't know where to look yesterday I would have been at a complete loss.  This forum has been immensely helpful and even my husband (who isn't keen on these internet sites) was asking me what the responses are and calling me from the bus on the way to work to ask what people had said.

        Thanks so much for taking the time to write to me.

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        Leigh
        Participant

        Thanks Lisa, this is just such a crappy thing to have to face, especially with young children.  As soon as I got those results in the mail I immediately was so worried for them.  It doesn't feel like this is really about me and my life, but my children's.  It is like a bad dream. 

        I am told by so many people not to look at the internet but if I didn't know where to look yesterday I would have been at a complete loss.  This forum has been immensely helpful and even my husband (who isn't keen on these internet sites) was asking me what the responses are and calling me from the bus on the way to work to ask what people had said.

        Thanks so much for taking the time to write to me.

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        Lisa13
        Participant

        Hi Leigh,

        I have a 17 month old daughter  so I completely understand your fears and panic.  I had a huge swollen lymph node in my groin when I was diagnosed and an ultrasound suggested it was just an infection. My surgical oncologist felt them and said it was cancer and I freaked.   I had 2 biopsey's taken and they were shocked to find out they wern't cancerous – just my own immune system fighting the melanoma.  After a PETscan before surgery, 1 lymph node lit up which was cancer, but it was not the biggest node.  I had 19 lymph nodes in my groin removed 5 weeks ago and no signs of lymphedema.

        Everyone here has gone through or is going through what you are experiencing and I know it's hard not to read into the results, what if's, symptoms, etc.  At this point, you have to look after yourself and remain positive, no matter what.  I spent 2 weeks crying because I was so scared not to be able to watch my daughter grow up, but I was getting ahead of myself and now I chose to enjoy my life and remain hopeful.

        Take a deep breath, go to your appointments, get your tests done and deal with the results as they come in. It may or may not be anything serious.

        Be strong!

        Lisa – Stage 3c 

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        Leigh
        Participant

        Thanks Carol for your note.  My husband is coming to my appts and is really great overall.  We are just really tired at the moment with a wee baby who has had severe reflux and starting on solids at the moment which seems to be making things worse again. Sleep just isn't happening!

        I have been to the surgeon today (my second opinion surgeon that ordered the CT in the first placeZA) – his approach is basically non-interventionalist.  He doesn't believe in SLNB for anybody, doesn't believe the evidence shows they have a place and wouldn't have recommended I have one in the first place.  He did the CT scan for my groin pain because I requested it as I was unsure what was causing the pain.  Now it has shown that there is no cause for the pain but these lymph nodes are on the upper limit of normal.  (1cm is the upper limit).

        I have to agree with him that this could be because of the two infections I have had in biopsy sites on my leg in the past couple of months along with the puerperal infection I had following a C-Section 6 months ago.  His opinion is to definitely NOT proceed to PETCT.  He is not sure what he would do with the information if the nodes did light up, he feels it wouldn't be easy to biopsy the inguinal nodes and to biopsy the retroperitoneal would require open laparoscopy.  (my pathologist friend said often these nodes come back as reactive lymph nodes and they suggest removal in any case for further review). 

        He thinks given the level of intervention required, with the very low risk my melanoma has spread and negative sentinel node (with a good operating surgeon with lots of experience) that I should not do anything.  If I do anything perhaps a CT scan at 3 or 6 months to check the size of the nodes hasn't changed dramatically but he wouldn't even recommend that.  He doesn't think that knowing this is melanoma 3-6 months earlier (in the very unlikely event of it being that) would make any difference to my prognosis given the limitations of current treatments for more advanced disease.

        I was relatively happy with the first part until I asked whether other surgeons would agree with this opinion, he said no, many would be much more aggressive and proceed to PET, biopsy, etc. 

        I have made an appt with my actual surgeon to see what his opinion is (I do trust his opinion as he has a good amount of experience with melanoma).  He is obviously more interventionalist and carries out SLNB etc so perhaps will have a different angle on this.

        Does anybody here have any thoughts on this? I definitely prefer doing something to not, but worry that this may lead me down a track of significant intervention, side effects and problems for no reason at all.  I just dont know where to go to with this and seeing others stories here really frighten me.

        Thanks for all your help.

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        lhaley
        Participant

        Leigh,

        I'm glad you got in to see one of your surgeons. It's good that you are going to talk to your other Dr. though. I disagree with the comment that knowing this is melanoma (it if is) would make a difference in the prognosis.  I've had surgery for all 5 of my recurrances – been stage IV for almost 5 years.  Timing does make a difference!  Good chance that it is just a reactive node but doesn't sound like this Dr. is very aggressive. 

        Let us know what you hear from the other Dr.!  Maybe another CT in 2 months?  

        Wishing you the best,

        Linda

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        Leigh
        Participant

        Hi Linda,

        thanks for your response, I appreciate your comments re: whether timely diagnosis of metastatic melanoma does make a difference.  I dont believe he is very aggressive, he did say that in metastatic disease he only treats symptomatic problems rather than aggressively treating recurrences.  He was quite clear that is what he would want if he was sick.  I dont know if I could go with this approach.  Would most people on this board/most doctors in the states treat aggressively?  I would think so from what I have read.

         

        Thanks again.

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        Leigh
        Participant

        Hi Linda,

        thanks for your response, I appreciate your comments re: whether timely diagnosis of metastatic melanoma does make a difference.  I dont believe he is very aggressive, he did say that in metastatic disease he only treats symptomatic problems rather than aggressively treating recurrences.  He was quite clear that is what he would want if he was sick.  I dont know if I could go with this approach.  Would most people on this board/most doctors in the states treat aggressively?  I would think so from what I have read.

         

        Thanks again.

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        lhaley
        Participant

        Leigh,

        I'm glad you got in to see one of your surgeons. It's good that you are going to talk to your other Dr. though. I disagree with the comment that knowing this is melanoma (it if is) would make a difference in the prognosis.  I've had surgery for all 5 of my recurrances – been stage IV for almost 5 years.  Timing does make a difference!  Good chance that it is just a reactive node but doesn't sound like this Dr. is very aggressive. 

        Let us know what you hear from the other Dr.!  Maybe another CT in 2 months?  

        Wishing you the best,

        Linda

        Loading spinner
        Janner
        Participant

        If you REALLY have to do something, then I think a followup CT in 3-6 months is a good choice.  The likelihood that any of this is melanoma is extremely low and you have had other things that could cause reactive nodes.  Again, 1cm nodes aren't even out of the normal range.  You can get a PET/CT, but the PET is going to light up in the groin area causing you more grief.  And it could light up elsewhere causing more concern.  All this is unlikely to be melanoma.  As I said before, this is why they don't scan early stage melanoma warriors.  It's hard to ignore something once it's seen in a scan, but the likelihood it is related to melanoma is small.  I, personally, wouldn't be pursuing a biopsy.  More trauma to cause more problems, and most likely not mel.  To me, the followup CT makes the most sense.  They do that often for higher stage individuals – watching lung nodules, etc.  The followup CT gives you the guarantee that you are not ignoring something important, but it's unlikely to show any change.  No scans are likely to give you the answer to your first question, however, about the discomfort you feel in the groin.  Have you considered asking for a physical therapist?  Maybe there is more stretching, strengthening etc. that you can do that would help the discomfort you feel.

        Good luck on your next appt.

        Janner

        Stage I since 1992, 3 MM primaries

        Loading spinner
        Leigh
        Participant

        Hi Janner,

        thanks for your responses they have been a great help.  I am wondering about the PET/CT scan – when you say it will light up in the groin area is this because of the recent surgeries or because of recent infections?  The surgeon felt it wouldn't necessarily light up because of infection, I didnt really get to the bottom of the PET scan and what the results might mean.  I'm not sure about biopsy purely because it may come back as inconclusive in any case if it is a reactive node and then further surgery would be required. (In any case it would be very difficult to biopsy the retroperitoneum nodes).  I'm not sure if I am making sense here, I am still trying to get my head around it and haven't looked into what the role of PET is and what the results might indicate or what problems may be involved there.

        Thanks

        Loading spinner
        Janner
        Participant

        "Surgical changes" will light up a PET.  If you have scar tissue, healing, and yes, even infection can light up a PET.  If you are having irritation in the area still, then a PET scan could easily light up.  PETs measure metabolic activity.  So anytime anything is healing, you're likely to have higher metabolic activity in the area.  Same with cancer – it divides more rapidly so tends to show up on PET scans.  So does arthritis or inflammation.  So could a pulled muscle.  PETs can light up on areas that can't even be explained.  Sometimes, you can tell by the amound of metabolic activity (SUV) that it is still a benign issue.  But PETs are notorious for both false positives and false negatives.  They do not diagnose.  They also have a LOT of radiation so you might need to stay away from your kids for a short period of time (< 24 hours).

        In your situation when you really have ZERO reason to believe any of this is melanoma, doing more invasive procedures seems a little too aggressive.  You only saw these nodes (which aren't even large) on a CT for something else.  You had a negative SNB.  The likelihood of melanoma bypassing the sentinel nodes and going to other nodes in different areas is pretty slim.  The SNB is considered about 98% accurate.  Biopsying nodes via fine needle aspiration only works if you find melanoma.  Otherwise, it isn't conclusive.  To me, a followup CT in 3 to 6 months that showed no change in the node size would put the matter to rest.  There really is NO REASON to think you have melanoma elsewhere.  The reality is a followup CT in 3 to 6 months is probably the standard of care (even though it might not be the easist mentally).  Certainly you can demand a PET scan.  But it's still not going to tell you "for sure 100% positive" that something is ok or bad.  That's why followup scans that monitor growth are usually the best.  If nothing changes, then that's normal for you.  If something grows, then it is time to address it. 

        Best wishes on whatever you decide,

        Janner

        Loading spinner
        Leigh
        Participant

        Hi Janner,

        thanks so much for your reply.  This forum (and your informed posts) have really made a huge difference to me.   I think I will go for the CT in 3 months to monitor the nodes as I dont want to just leave it, but equally dont want to go down the road of interventions with the dangers that poses (with radiation from the PET, biopsies etc). 

        Just out of interest – I thought the SNB has a false negative rate of about 8% (depending on the surgeon etc).  I am fairly confident with mine as my surgeon is very experienced and I had a second opinion on the pathology from an experienced dermatopathologist so I imagine it would be lower than that.

        I also thought I would ask if you know what the current prognostic data is for Stage1a (the new criteria in 2010 have downgraded me from a 1b to 1a because of the mitotic rate vs Clarkes).  I cant find any data, and nothing that takes into account a negative sentinel node.  I have heard estimates ranging from 85% to 92% (2002 data), to verbal reports from one surgeon and a dermatologist that I have very minimal risk and it is probably up to 98% (this is in line with your SLNB false neg rate).  I'm not clear on it, I dont know if that is because I am lacking information or because there just isn't the information to be had.

        Thanks for all your help.  I think you must be in my part of the world based on the timings of the posts.

        Loading spinner
        Janner
        Participant

        The link that I think is significant is: http://www.asco.org/ascov2/Meetings/Abstracts?&vmview=abst_detail_view&confID=26&abstractID=3499

        It compares SEER data with AJCC  study data for stage I and II.  This was done before the new staging criteria so stage IA actually had broader criteria.  (I was stage IA and went to stage IB with the new staging).  Anyway, with a very large sample size, the SEER data showed Stage IA had about a 97.4% 10 year survival rate.  Again, this would be including those with higher mitosis that are now Stage IB now.   There iaren't many large studies that include SNB in the mix as the SNB typically isn't done for stage IA patients.  (I've had two stage I lesions – .58mm and .88mm and did not have a SNB for either).  So you are basically going to have to lump yourself with the stage IA patients who may/may not have had the SNB.  With zero mitosis and < 1mm lesion, I think the 97.4% rate probably applies to you – and may even be higher given the more stricter stage IA criteria now.

        I think the 3 month CT followup is a good choice to resolve this.  I recently had to do the same thing for a breast lump.  They biopsied mine but it was inconclusive.  So I had a followup ultrasound 3 months later and all was unchanged.  I'm back on a yearly mammogram schedule.

        Best wishes,

        Janner

        Loading spinner
        Janner
        Participant

        The link that I think is significant is: http://www.asco.org/ascov2/Meetings/Abstracts?&vmview=abst_detail_view&confID=26&abstractID=3499

        It compares SEER data with AJCC  study data for stage I and II.  This was done before the new staging criteria so stage IA actually had broader criteria.  (I was stage IA and went to stage IB with the new staging).  Anyway, with a very large sample size, the SEER data showed Stage IA had about a 97.4% 10 year survival rate.  Again, this would be including those with higher mitosis that are now Stage IB now.   There iaren't many large studies that include SNB in the mix as the SNB typically isn't done for stage IA patients.  (I've had two stage I lesions – .58mm and .88mm and did not have a SNB for either).  So you are basically going to have to lump yourself with the stage IA patients who may/may not have had the SNB.  With zero mitosis and < 1mm lesion, I think the 97.4% rate probably applies to you – and may even be higher given the more stricter stage IA criteria now.

        I think the 3 month CT followup is a good choice to resolve this.  I recently had to do the same thing for a breast lump.  They biopsied mine but it was inconclusive.  So I had a followup ultrasound 3 months later and all was unchanged.  I'm back on a yearly mammogram schedule.

        Best wishes,

        Janner

        Loading spinner
        Leigh
        Participant

        Hi Janner,

        thanks so much for your reply.  This forum (and your informed posts) have really made a huge difference to me.   I think I will go for the CT in 3 months to monitor the nodes as I dont want to just leave it, but equally dont want to go down the road of interventions with the dangers that poses (with radiation from the PET, biopsies etc). 

        Just out of interest – I thought the SNB has a false negative rate of about 8% (depending on the surgeon etc).  I am fairly confident with mine as my surgeon is very experienced and I had a second opinion on the pathology from an experienced dermatopathologist so I imagine it would be lower than that.

        I also thought I would ask if you know what the current prognostic data is for Stage1a (the new criteria in 2010 have downgraded me from a 1b to 1a because of the mitotic rate vs Clarkes).  I cant find any data, and nothing that takes into account a negative sentinel node.  I have heard estimates ranging from 85% to 92% (2002 data), to verbal reports from one surgeon and a dermatologist that I have very minimal risk and it is probably up to 98% (this is in line with your SLNB false neg rate).  I'm not clear on it, I dont know if that is because I am lacking information or because there just isn't the information to be had.

        Thanks for all your help.  I think you must be in my part of the world based on the timings of the posts.

        Loading spinner
        Janner
        Participant

        "Surgical changes" will light up a PET.  If you have scar tissue, healing, and yes, even infection can light up a PET.  If you are having irritation in the area still, then a PET scan could easily light up.  PETs measure metabolic activity.  So anytime anything is healing, you're likely to have higher metabolic activity in the area.  Same with cancer – it divides more rapidly so tends to show up on PET scans.  So does arthritis or inflammation.  So could a pulled muscle.  PETs can light up on areas that can't even be explained.  Sometimes, you can tell by the amound of metabolic activity (SUV) that it is still a benign issue.  But PETs are notorious for both false positives and false negatives.  They do not diagnose.  They also have a LOT of radiation so you might need to stay away from your kids for a short period of time (< 24 hours).

        In your situation when you really have ZERO reason to believe any of this is melanoma, doing more invasive procedures seems a little too aggressive.  You only saw these nodes (which aren't even large) on a CT for something else.  You had a negative SNB.  The likelihood of melanoma bypassing the sentinel nodes and going to other nodes in different areas is pretty slim.  The SNB is considered about 98% accurate.  Biopsying nodes via fine needle aspiration only works if you find melanoma.  Otherwise, it isn't conclusive.  To me, a followup CT in 3 to 6 months that showed no change in the node size would put the matter to rest.  There really is NO REASON to think you have melanoma elsewhere.  The reality is a followup CT in 3 to 6 months is probably the standard of care (even though it might not be the easist mentally).  Certainly you can demand a PET scan.  But it's still not going to tell you "for sure 100% positive" that something is ok or bad.  That's why followup scans that monitor growth are usually the best.  If nothing changes, then that's normal for you.  If something grows, then it is time to address it. 

        Best wishes on whatever you decide,

        Janner

        Loading spinner
        Leigh
        Participant

        Hi Janner,

        thanks for your responses they have been a great help.  I am wondering about the PET/CT scan – when you say it will light up in the groin area is this because of the recent surgeries or because of recent infections?  The surgeon felt it wouldn't necessarily light up because of infection, I didnt really get to the bottom of the PET scan and what the results might mean.  I'm not sure about biopsy purely because it may come back as inconclusive in any case if it is a reactive node and then further surgery would be required. (In any case it would be very difficult to biopsy the retroperitoneum nodes).  I'm not sure if I am making sense here, I am still trying to get my head around it and haven't looked into what the role of PET is and what the results might indicate or what problems may be involved there.

        Thanks

        Loading spinner
        Janner
        Participant

        If you REALLY have to do something, then I think a followup CT in 3-6 months is a good choice.  The likelihood that any of this is melanoma is extremely low and you have had other things that could cause reactive nodes.  Again, 1cm nodes aren't even out of the normal range.  You can get a PET/CT, but the PET is going to light up in the groin area causing you more grief.  And it could light up elsewhere causing more concern.  All this is unlikely to be melanoma.  As I said before, this is why they don't scan early stage melanoma warriors.  It's hard to ignore something once it's seen in a scan, but the likelihood it is related to melanoma is small.  I, personally, wouldn't be pursuing a biopsy.  More trauma to cause more problems, and most likely not mel.  To me, the followup CT makes the most sense.  They do that often for higher stage individuals – watching lung nodules, etc.  The followup CT gives you the guarantee that you are not ignoring something important, but it's unlikely to show any change.  No scans are likely to give you the answer to your first question, however, about the discomfort you feel in the groin.  Have you considered asking for a physical therapist?  Maybe there is more stretching, strengthening etc. that you can do that would help the discomfort you feel.

        Good luck on your next appt.

        Janner

        Stage I since 1992, 3 MM primaries

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        Carol Taylor
        Participant

        Leigh,

        Because you asked for thoughts, I'll give you why I chose what I did. After the two surgeries, all 27 nodes were removed and only the first sentinel was cancerous, around 1mm. The only option I was given was Interferon. The oncologist gave me that option and I researched it on my own.

        The PET?CT scan I had had earlier actually played into my decision not to do the Interferon.  When I began all this I was smack dab in the middle of menopause. Several hot flashes a day, periods winding down. Immediately after that scan I had no more hot flashes…I've never had another one; and no more periods, not even spotting. My menopause stopped completely.  Some women may find that a wonderful blessing and side effect.  It worried me because that PET/CT scan is the only thing I can attribute this to.  I normally don't react well to meds of any kind (everything makes me sleepy at least), so I'm thinking all that nuclear radioactive dye altered that part of my system.

        I don't want that to scare anyone.  If I ever have to have another one I will.

        I didn't want to see how Interferon would affect my system.  I've seen the terms "watch and wait" and "nonintervention." For me, I was and am being proactive. Again, this is for me! People who chose Interferon and are pleased with their decision have my respect. We all have to choose what we're comfortable with and can live with.

        Everything I read (and I went to good fact sites) said Interferon was no guarantee against recurrence. They all discussed liver damage..the kind and amount of damage would vary between patients but there would be some. Fatigue and nausea were common. Other organ damage possibilities were discussed among the sites.

        Because mine was in the first of 27 nodes, small, and because of the PET?CT scan, I decided to keep my body healthy in case I ever needed to fight a recurrence.  I think I'll need a functioning liver, my strength, and food on my stomach. All my vitals have remained great…2 and a half years now. All tests come back great. Twice a year skin check by melanoma specialist in derm. I do consider this proactive because I'm physically, spiritually & emotionally in a good place if there is a recurrence.  If Interferon had offered a guarantee I probably would have gone with it. At least the info was honest and said there are no guarantees.

        I'm still cancer free and healthy.  Everyone of us, have had to weigh the options we were given, research, discuss, pray, and arrive at the decisions we were comfortable with. My husband supported my decision because he understood my reasoning and knew I had to make these calls because it's my body and I have to literally live with all side effects of those decisions.  I've never second-guessed myself on this and haven't looked back. Even if the cancer had returned in 2 months I wouldn't because there are no guarantees and I made the call I could live with.

        That's what you'll have to do too. YOU have to make the calls based on what matters to you, that you can live with understanding that there are no perfect options. And that's somthing we all eventually come to terms with, there are issues to deal with no matter what we decide, but if you call your own shots…getting second and maybe third opinions if that's what you need to do, then do it….if you call your own shots it's easier to live with any consequences/side effects because you made the call you were comfortable with.

        Let us know how things go.

        Grace and peace,

        Carol

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        Leigh
        Participant

        Thanks for your reply Carol.  I appreciate your experience with the PETCT and possible effects around menopause.  It is hard to know of course what that means and extrapolate it (and I haven't read up on this) but it does make me think twice about going ahead with the PET especially when the indications for it are questionable along with the problem of interpreting the results.

        I agree that I have to make the calls myself with second and third opinions as it is easier to live with the consequences/side effects when I have taken that responsibility.  My family etc question if I should be questioning a surgeons judgement  but I know that it is a grey area and only one opinion so I want to make sure I am fully informed.

        I think I will just opt for a f/u CT in afew months, but am waiting for my original surgeons opinion on Wednesday – I dont think he will be too surprised that I have sought further information.

        You sound like you have really been through the mill with all this, I had no idea what people go through with cancer, you really cant have an understanding unless you have been there. I hope that you continue to remain well and continue to live your life well and enjoy the moments.

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        Carol Taylor
        Participant

        I haven't been anywhere near a mill compared to many people!  I read some of the stories on this forum and can cry for them.

        I only respond one more time because you say people close to you are questioning you questioning the surgeon!  You question everybody you need to question!  As often as you need to question!  I look at it this way, we question God during this (if you haven't, trust me, many do, I sure did). If we'll question GOD, what makes the surgeon superior that we can't & don't question him/her?

        It's your health, your body, your decisions, and your right & duty to ask questions. That's part of their job. It's what you're paying for. You can't make informed decisions about anything if you don't have the info you need and you won't get that info if you don't ask.

        I hope all turns out well for you.

        Carol

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        Carol Taylor
        Participant

        I haven't been anywhere near a mill compared to many people!  I read some of the stories on this forum and can cry for them.

        I only respond one more time because you say people close to you are questioning you questioning the surgeon!  You question everybody you need to question!  As often as you need to question!  I look at it this way, we question God during this (if you haven't, trust me, many do, I sure did). If we'll question GOD, what makes the surgeon superior that we can't & don't question him/her?

        It's your health, your body, your decisions, and your right & duty to ask questions. That's part of their job. It's what you're paying for. You can't make informed decisions about anything if you don't have the info you need and you won't get that info if you don't ask.

        I hope all turns out well for you.

        Carol

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        Leigh
        Participant

        Thanks for your reply Carol.  I appreciate your experience with the PETCT and possible effects around menopause.  It is hard to know of course what that means and extrapolate it (and I haven't read up on this) but it does make me think twice about going ahead with the PET especially when the indications for it are questionable along with the problem of interpreting the results.

        I agree that I have to make the calls myself with second and third opinions as it is easier to live with the consequences/side effects when I have taken that responsibility.  My family etc question if I should be questioning a surgeons judgement  but I know that it is a grey area and only one opinion so I want to make sure I am fully informed.

        I think I will just opt for a f/u CT in afew months, but am waiting for my original surgeons opinion on Wednesday – I dont think he will be too surprised that I have sought further information.

        You sound like you have really been through the mill with all this, I had no idea what people go through with cancer, you really cant have an understanding unless you have been there. I hope that you continue to remain well and continue to live your life well and enjoy the moments.

        Loading spinner
        Carol Taylor
        Participant

        Leigh,

        Because you asked for thoughts, I'll give you why I chose what I did. After the two surgeries, all 27 nodes were removed and only the first sentinel was cancerous, around 1mm. The only option I was given was Interferon. The oncologist gave me that option and I researched it on my own.

        The PET?CT scan I had had earlier actually played into my decision not to do the Interferon.  When I began all this I was smack dab in the middle of menopause. Several hot flashes a day, periods winding down. Immediately after that scan I had no more hot flashes…I've never had another one; and no more periods, not even spotting. My menopause stopped completely.  Some women may find that a wonderful blessing and side effect.  It worried me because that PET/CT scan is the only thing I can attribute this to.  I normally don't react well to meds of any kind (everything makes me sleepy at least), so I'm thinking all that nuclear radioactive dye altered that part of my system.

        I don't want that to scare anyone.  If I ever have to have another one I will.

        I didn't want to see how Interferon would affect my system.  I've seen the terms "watch and wait" and "nonintervention." For me, I was and am being proactive. Again, this is for me! People who chose Interferon and are pleased with their decision have my respect. We all have to choose what we're comfortable with and can live with.

        Everything I read (and I went to good fact sites) said Interferon was no guarantee against recurrence. They all discussed liver damage..the kind and amount of damage would vary between patients but there would be some. Fatigue and nausea were common. Other organ damage possibilities were discussed among the sites.

        Because mine was in the first of 27 nodes, small, and because of the PET?CT scan, I decided to keep my body healthy in case I ever needed to fight a recurrence.  I think I'll need a functioning liver, my strength, and food on my stomach. All my vitals have remained great…2 and a half years now. All tests come back great. Twice a year skin check by melanoma specialist in derm. I do consider this proactive because I'm physically, spiritually & emotionally in a good place if there is a recurrence.  If Interferon had offered a guarantee I probably would have gone with it. At least the info was honest and said there are no guarantees.

        I'm still cancer free and healthy.  Everyone of us, have had to weigh the options we were given, research, discuss, pray, and arrive at the decisions we were comfortable with. My husband supported my decision because he understood my reasoning and knew I had to make these calls because it's my body and I have to literally live with all side effects of those decisions.  I've never second-guessed myself on this and haven't looked back. Even if the cancer had returned in 2 months I wouldn't because there are no guarantees and I made the call I could live with.

        That's what you'll have to do too. YOU have to make the calls based on what matters to you, that you can live with understanding that there are no perfect options. And that's somthing we all eventually come to terms with, there are issues to deal with no matter what we decide, but if you call your own shots…getting second and maybe third opinions if that's what you need to do, then do it….if you call your own shots it's easier to live with any consequences/side effects because you made the call you were comfortable with.

        Let us know how things go.

        Grace and peace,

        Carol

        Loading spinner
        Leigh
        Participant

        Thanks Carol for your note.  My husband is coming to my appts and is really great overall.  We are just really tired at the moment with a wee baby who has had severe reflux and starting on solids at the moment which seems to be making things worse again. Sleep just isn't happening!

        I have been to the surgeon today (my second opinion surgeon that ordered the CT in the first placeZA) – his approach is basically non-interventionalist.  He doesn't believe in SLNB for anybody, doesn't believe the evidence shows they have a place and wouldn't have recommended I have one in the first place.  He did the CT scan for my groin pain because I requested it as I was unsure what was causing the pain.  Now it has shown that there is no cause for the pain but these lymph nodes are on the upper limit of normal.  (1cm is the upper limit).

        I have to agree with him that this could be because of the two infections I have had in biopsy sites on my leg in the past couple of months along with the puerperal infection I had following a C-Section 6 months ago.  His opinion is to definitely NOT proceed to PETCT.  He is not sure what he would do with the information if the nodes did light up, he feels it wouldn't be easy to biopsy the inguinal nodes and to biopsy the retroperitoneal would require open laparoscopy.  (my pathologist friend said often these nodes come back as reactive lymph nodes and they suggest removal in any case for further review). 

        He thinks given the level of intervention required, with the very low risk my melanoma has spread and negative sentinel node (with a good operating surgeon with lots of experience) that I should not do anything.  If I do anything perhaps a CT scan at 3 or 6 months to check the size of the nodes hasn't changed dramatically but he wouldn't even recommend that.  He doesn't think that knowing this is melanoma 3-6 months earlier (in the very unlikely event of it being that) would make any difference to my prognosis given the limitations of current treatments for more advanced disease.

        I was relatively happy with the first part until I asked whether other surgeons would agree with this opinion, he said no, many would be much more aggressive and proceed to PET, biopsy, etc. 

        I have made an appt with my actual surgeon to see what his opinion is (I do trust his opinion as he has a good amount of experience with melanoma).  He is obviously more interventionalist and carries out SLNB etc so perhaps will have a different angle on this.

        Does anybody here have any thoughts on this? I definitely prefer doing something to not, but worry that this may lead me down a track of significant intervention, side effects and problems for no reason at all.  I just dont know where to go to with this and seeing others stories here really frighten me.

        Thanks for all your help.

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        Carol Taylor
        Participant

        Leigh,

        I'm just catching up on this conversation.  Take a deep breath.  I know you're running on empty and scared, you've got those two little ones to think about. Got it.

        Now, you are on a roller coaster, but don't start second guessing yourself and playing the "what if" game and going down the "If only I hadn't Road." None of us can go back and undo any choices.  You make the best choice you can at the time and live with whatever the outcomes are nd keep going.  It's like that in anything in life.

        Do make plans to take someone close to you on all future appts beginning Monday and make sure they go in every room you go in. Not only to hear everything, but for your own moral support. I recommend your husband/boyfriend, someone who lives with you as that person will be more actively involved.

        Right now, my friend, have you got someone who can watch your children so you can get some sleep and take a walk and get a good meal?  You've got to take care of yourself and you'll need someone to help you do that.  Make use of those close to you.

        Tomorrow will be here soon enough. Get through today and clear your head. You can do this.

        Grace and peace,

        Carol stage 3b (with lymphedema)

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        Leigh
        Participant

        Thanks for your help today, it has really made a difference.  I have just been looking at some articles and 1cm is the upper limit of normal for nodes in this area, but size isn't a particularly good indicator as smaller nodes may contain melanoma and larger ones may just be normal size for you. 

        I'm not sure about the PETCT either – I had a C-section 6 months ago and the SLNB/WLE 3 months ago so I am concerned about what that information will show with false positives. 

        I wonder now whether I should have had the SLNB in the first place as it didn't yield any information, potentially caused pain and discomfort leading to the CT, now possibly a PET and on and on.  It is a rollercoaster of intervention that may potentially be of no benefit in the end.

        Loading spinner
        Janner
        Participant

        No, I'm not a doctor, just an informed consumer.

        A PET/CT can be a mixed blessing.  Since your surgery is relatively recent, a PET scan will likely show increased uptake in the area.  It would be difficult to differentiate surgical changes from anything else at this point. It could look at the other lymph nodes not directly in the surgical area, but unless there is real reason to suspect melanoma has spread beyond the groin, I probably wouldn't go there.  PET scans are expensive and notorious for both false positives and false negatives.  It adds to the picture but isn't definitive.

        In general, the reason they don't scan stage I individuals is for many of the things you are going through.  False positives.  You see something, you have to watch it and scan again in a couple of months or biopsy.  Most of us have benign beasties inside and scanning them means we have to figure them out.  They call out lymph nodes on the CT specifically because you have a history of melanoma and lymph nodes are a typical path of metastases.  Calling them out doesn't mean much if they say they are normal size (which is what I read).  Noting the size can also be of benefit as a baseline.  So if they chose to scan you again in 3 months, you would have the node sizes (and previous films) for comparison. 

        Good luck,

        Janner

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        Leigh
        Participant

        Hi Janner,

        thanks for your response again.  I have just been speaking with my pathologist friend and she has been very reassuring…actually mentioned pretty much all that you have in your post including CYA.  (Are you a doctor?)  She felt that I need to consider how far to get into this actually – PET/CT, possibly biopsy, maybe leading to more surgery if the node is reactive etc etc.  I have no idea why they are commenting on all the nodes if 1cm is about normal for most nodes! Are nodes always seen on CT – I dont know why they are commenting on them otherwise.

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        Janner
        Participant

        You say "lymph node changes".  But… since this is your first CT, how do you know they have changed?  All this could be normal for you.  All it says to me is they don't have a good explanation for your groin discomfort from the CT films.  And scaring and lymphedema and nerve damage could all cause discomfort.  All are surgically related.  The nodes aren't abnormally sized as specified in the comments.  1cm is about normal for most nodes, but some can be smaller or larger.  It's not like "this node is 11mm so it is cancer".

        Lymph nodes can be different sizes and it is not uncommon to have them swell as a result of infection or trauma.  You've recently had both with surgery being the trauma.  You can also get reactive nodes.  Reactive nodes swell for some reason, then they never return to their normal size.  Truthfully, the CT sounds reasonably normal to me.  Many times they will call out issues to CYA (cover your butt). 

        Post back with what your surgeon says, but again I wouldn't be stressing this.  It all sounds relatively benign.

        Best wishes,

        Janner

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        Leigh
        Participant

        Thanks Linda for your reply.  Yes it is my first CT and as I mentioned there has definitely been a mix-up with sending me the results (including the films!) over the weekend.  I spoke with the surgeon over the phone an hour or so ago but he did not want to comment as he didn't have the scans and wanted to consider them and what to do before discussing it with me.  I think that is fair enough as he doesn't want to say something off the cuff and then have to retract it.  I'll see him tomorrow afternoon after his operating list.   I then rang the GP to see what her take on it was and she felt usually these things are red herrings, but didn' tknow anything about lymph node sizes etc.  I'm not sure how lymph node changes can be red herrings in these situations though.  This whole thing has been exhausting and I just wish I weren't in this situation.  Its fair to say I am not coping well, my baby and toddler are up all night and I barely get 1 hour sleep before being woken up so I am running on empty at the moment.

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      lhaley
      Participant

      Leigh,

      While I can't tell you what you ct scan results mean it does sound to be inconclusive, that's why they are requesting a PET.  You mention talking to your GP. If there are any suspicions you need to get to a specialist that can look at the scans themselves and add their opinion to it.

      I'm guessing that this is your first CT.  We all have abnomilies in our body that often don't mean anything. Hopefully that is the case with yours.  It does seem odd that this has all occured after the SNB.  I recently had some nodes removed. Since that time I have had some really strange reactions that right now the Drs. are thinking is that the lymphatic system was damaged in the area. It's now been a few months and slowly things are getting better.

      Because you mentioned that it is Sunday I'm assuming you are from a country other than the US. I'm really surprised that your results were mailed to you, especially if there was anything that needed to be discussed.

      Take a deep breath and unfortunately you will have to wait till Monday morning. You might want to leave a message on your surgeons answer service that you would like either a call early Monday or an appointment to review this information.

      Let us know,

      linda

      Stage IV since 06

      stable

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      LynnLuc
      Participant

      Sometimes you have an infection and it shows up in the lymph nodes…and may well not be anything  and the  haemangioma in the liver ( if that is what it is) is usually  non cancerous…I think it's odd they sent the results to you though…-Lynn

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        Leigh
        Participant

        Thanks Lynn, I just read your bio.  I do wonder where you draw the line with advocating for your own treatment.  It is hard to know when to leave things and just accept a doctors opinion at face value.  (I have been told by family, husbands boss etc to take surgeons opinion today and just forget about it all – ie no follow-up with scans or anything other than usual skin examinations).  Good on you for following through on things yourself when you have been worried.  I have felt like I am overly anxious and I am hoping that is for good reason but I do not want to miss anything and not have the best treatment possible.

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        Terra
        Participant

        It is so hard not to be overly anxious when it is you and you have such young childern.  My husband is currently stage 4 and in trreatment.  We have a 4 and 2 year old and are expecting in June again (unexpectedly).  So it adds so much to your mind.  You've been given good advice but I know it is hard to take one day at a time at this point. 

        Good luck, Terra

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        Leigh
        Participant

        Thanks for your message Terra.  I cant imagine how you are managing to cope with almost 3 children and all of this on your plate.  I really hope that you have alot of support and getting some time to yourself.  It has been a huge wake up call for me to look at self-care and making sure to do this despite everything else that goes on in life and the never-ending care needed by such young kids.  It is so important to look after yourself first as you are the centre of the family and need to be there for everybody.  Best wishes

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        Leigh
        Participant

        Hi,

        I am not sure how this works and if people look back to see these posts…

        I went to my original surgeon today (he seemed rather irritated with me having sought another opinion and I came away feeling pretty overwhelmed).  He felt that we need to go ahead with the PETCT, if it were his wife he would.  He felt the scan has come back with large nodes, and he wouldn't be happy just leaving it.  The option of waiting for another CT would just be delaying things, then if they came back the same or slightly bigger hwat would that mean.  He didn't seem to think that having a PETCT would cause too many problems with false negatives.  If there was cancer in the nodes they would light up and he could do something about it whereas if we leave it he couldn't do anything.  He felt that although it was a small chance we now have a CT report suggesting further investigation (PET) and we cant ignore that.  He didn't seem to think the two surgeries (C-section 6 months ago and WLE +SLNB almost 4 months ago) along with three recent infections in the area (two infections to biopsy sites in the leg and a pueperal infection after the c-section) would impact on our ability to read the scan and see if it is indeed cancer. 

        I have no idea what to do now.  He was pretty adament that is what he would recommend but will speak with the radiologist.  He said that in a room full of surgeons it would be contentious and half would probably come down on either side.

        Not sure what to do.  Any suggestions would be appreciated. (Also I am breastfeeding and a PETCT would be difficult as my baby wont take a bottle, although this wont alter my approach to getting the right treatment).

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        FormerCaregiver
        Participant

        A PET scan is probably the best way for any doctor to determine what should
        be done next. You mention Clark's level IV, and that would be a good reason
        for further investigation (see:
        http://en.wikipedia.org/wiki/Breslow%27s_depth#Clark.27s_level ).

        Here is some info about the PET scans and melanoma:
        http://www.oncolink.org/experts/article.cfm?c=4&s=36&ss=116&id=1846
        This article says that "… PET imaging is a useful non-invasive test for
        detection of sub clinical lymph nodes and metastasis. It is also very useful
        in evaluating suspicious findings on CT scan or MRI".

        Hope this helps.

        Frank

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        FormerCaregiver
        Participant

        A PET scan is probably the best way for any doctor to determine what should
        be done next. You mention Clark's level IV, and that would be a good reason
        for further investigation (see:
        http://en.wikipedia.org/wiki/Breslow%27s_depth#Clark.27s_level ).

        Here is some info about the PET scans and melanoma:
        http://www.oncolink.org/experts/article.cfm?c=4&s=36&ss=116&id=1846
        This article says that "… PET imaging is a useful non-invasive test for
        detection of sub clinical lymph nodes and metastasis. It is also very useful
        in evaluating suspicious findings on CT scan or MRI".

        Hope this helps.

        Frank

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        Carol Taylor
        Participant

        Leigh,

        What's your gut telling you? Put aside the baby & bottle issue…she'll take a bottle if she needs to, your life is more important.

        My PET/CT scan saved my life even though it did shut down menopause (I firmly believe but won't rehash).  While you may not have cancer, and I pray you don't, I honestly don't know of another way to find out than the scan.

        Don't worry about getting that second opinion.  Do what you need to do and your surgeon will get over it. But from what you write, you really do have a great deal of good info…and an overwhelming amount to digest and make a decision from, but you've got plenty to make a decision on.

        Maybe you and your husband need to have a good long talk and weigh all options. It still needs to be your call but he needs to be part of the process and he can probably help you think rationally and decide what to do. What's best to do not what's more comfortable or easier or better for baby…it's better for baby that you be here, even if it's to give her a bottle.

        Carol

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        Vermont_Donna
        Participant

        Dear Leigh,

        I have followed the replies to your original post and have also replied twice. It seems that you have received very good information and suggestions. I feel that reading between the lines is that you really do want to do the PET and it will always nag at you that you didnt, even with knowing the chances could be you would have further investigation of suspicious findings.

        The information given me when I have had my PET/CT scans (always have had the combo at the same time) is that you cannot be around small children for 24 hours. You would probably be informed the same and should arrange to stay at a relatives or friends house for that duration. Your baby can be cup fed and will be ok. As Carol said above, your health matters most.

        Good luck with your decision.

        Vermont_Donna

        stage 3a

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        Vermont_Donna
        Participant

        Dear Leigh,

        I have followed the replies to your original post and have also replied twice. It seems that you have received very good information and suggestions. I feel that reading between the lines is that you really do want to do the PET and it will always nag at you that you didnt, even with knowing the chances could be you would have further investigation of suspicious findings.

        The information given me when I have had my PET/CT scans (always have had the combo at the same time) is that you cannot be around small children for 24 hours. You would probably be informed the same and should arrange to stay at a relatives or friends house for that duration. Your baby can be cup fed and will be ok. As Carol said above, your health matters most.

        Good luck with your decision.

        Vermont_Donna

        stage 3a

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        Carol Taylor
        Participant

        Leigh,

        What's your gut telling you? Put aside the baby & bottle issue…she'll take a bottle if she needs to, your life is more important.

        My PET/CT scan saved my life even though it did shut down menopause (I firmly believe but won't rehash).  While you may not have cancer, and I pray you don't, I honestly don't know of another way to find out than the scan.

        Don't worry about getting that second opinion.  Do what you need to do and your surgeon will get over it. But from what you write, you really do have a great deal of good info…and an overwhelming amount to digest and make a decision from, but you've got plenty to make a decision on.

        Maybe you and your husband need to have a good long talk and weigh all options. It still needs to be your call but he needs to be part of the process and he can probably help you think rationally and decide what to do. What's best to do not what's more comfortable or easier or better for baby…it's better for baby that you be here, even if it's to give her a bottle.

        Carol

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        Janner
        Participant

        The only question here is what works for you?  What can you live with?  This is not the oncologist's decision, this is yours.  So write out the pros and cons.  Talk it over with your SO.  And decide what makes YOU the most comfortable.  If you want the PET now, do it.  If you want the CT later, do it.  This is all about YOU and no one else.

        BTW, doctors work for you, so if he has a problem with the second opinion, it's his problem.  I'm curious, though, did you ask him to do a scan and he refused?  Did he discount your lingering symptoms?

        Good luck with whatever you decide.

        Janner

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        Janner
        Participant

        The only question here is what works for you?  What can you live with?  This is not the oncologist's decision, this is yours.  So write out the pros and cons.  Talk it over with your SO.  And decide what makes YOU the most comfortable.  If you want the PET now, do it.  If you want the CT later, do it.  This is all about YOU and no one else.

        BTW, doctors work for you, so if he has a problem with the second opinion, it's his problem.  I'm curious, though, did you ask him to do a scan and he refused?  Did he discount your lingering symptoms?

        Good luck with whatever you decide.

        Janner

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        lhaley
        Participant

        Don't let it bother you that your surgeon was upset that you went for a second opinion. As he said there could be many Doctors discussing your case and they would not necessarily agree.  You have to be educated and make the final decisions without looking back on what you decide.

        I did some surfing and came up with the following that I've cut and pasted about nursing:

        Some of the administered 18F-FDG might be excreted in small amounts in breast milk. Normally, the scan should be delayed until breast feeding has stopped. But if the scan is needed urgently, then it is advisable to collect milk before the scan, so that this can be used to provide a feed after the scan. Furthermore, milk should be collected and discarded for 2 hours after the scan. Normal breast feeding can resume after that.

        I always go out for lunch after my scan so I'm around from young to old. I've asked the radiologist and he told me that by the time I would arrive at a restaurant I would be fine to be around others. However, I believe you are posting from a different country and they might have different amounts of FDG that is injected, also you would be cuddling your baby vs me just being near others.  If you do decide to go ahead with the PET you should call the place where you would get it and get their advice.  I would definitely pump ahead as much as you can.

        This might seem "cold" but another consideration is insurance. Will your insurance pay?  This is not a cheap scan. Usually 5,000-8,000!  Make sure if you go ahead to get it pre-authorized since you are considered a very low stage.

        I hope your worry is all for nothing. Do keep an eye on your body in the future no matter what your decision comes to be.

        Linda

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        lhaley
        Participant

        Don't let it bother you that your surgeon was upset that you went for a second opinion. As he said there could be many Doctors discussing your case and they would not necessarily agree.  You have to be educated and make the final decisions without looking back on what you decide.

        I did some surfing and came up with the following that I've cut and pasted about nursing:

        Some of the administered 18F-FDG might be excreted in small amounts in breast milk. Normally, the scan should be delayed until breast feeding has stopped. But if the scan is needed urgently, then it is advisable to collect milk before the scan, so that this can be used to provide a feed after the scan. Furthermore, milk should be collected and discarded for 2 hours after the scan. Normal breast feeding can resume after that.

        I always go out for lunch after my scan so I'm around from young to old. I've asked the radiologist and he told me that by the time I would arrive at a restaurant I would be fine to be around others. However, I believe you are posting from a different country and they might have different amounts of FDG that is injected, also you would be cuddling your baby vs me just being near others.  If you do decide to go ahead with the PET you should call the place where you would get it and get their advice.  I would definitely pump ahead as much as you can.

        This might seem "cold" but another consideration is insurance. Will your insurance pay?  This is not a cheap scan. Usually 5,000-8,000!  Make sure if you go ahead to get it pre-authorized since you are considered a very low stage.

        I hope your worry is all for nothing. Do keep an eye on your body in the future no matter what your decision comes to be.

        Linda

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        Leigh
        Participant

        Hi,

        I am not sure how this works and if people look back to see these posts…

        I went to my original surgeon today (he seemed rather irritated with me having sought another opinion and I came away feeling pretty overwhelmed).  He felt that we need to go ahead with the PETCT, if it were his wife he would.  He felt the scan has come back with large nodes, and he wouldn't be happy just leaving it.  The option of waiting for another CT would just be delaying things, then if they came back the same or slightly bigger hwat would that mean.  He didn't seem to think that having a PETCT would cause too many problems with false negatives.  If there was cancer in the nodes they would light up and he could do something about it whereas if we leave it he couldn't do anything.  He felt that although it was a small chance we now have a CT report suggesting further investigation (PET) and we cant ignore that.  He didn't seem to think the two surgeries (C-section 6 months ago and WLE +SLNB almost 4 months ago) along with three recent infections in the area (two infections to biopsy sites in the leg and a pueperal infection after the c-section) would impact on our ability to read the scan and see if it is indeed cancer. 

        I have no idea what to do now.  He was pretty adament that is what he would recommend but will speak with the radiologist.  He said that in a room full of surgeons it would be contentious and half would probably come down on either side.

        Not sure what to do.  Any suggestions would be appreciated. (Also I am breastfeeding and a PETCT would be difficult as my baby wont take a bottle, although this wont alter my approach to getting the right treatment).

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        Leigh
        Participant

        Thanks for your message Terra.  I cant imagine how you are managing to cope with almost 3 children and all of this on your plate.  I really hope that you have alot of support and getting some time to yourself.  It has been a huge wake up call for me to look at self-care and making sure to do this despite everything else that goes on in life and the never-ending care needed by such young kids.  It is so important to look after yourself first as you are the centre of the family and need to be there for everybody.  Best wishes

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        Terra
        Participant

        It is so hard not to be overly anxious when it is you and you have such young childern.  My husband is currently stage 4 and in trreatment.  We have a 4 and 2 year old and are expecting in June again (unexpectedly).  So it adds so much to your mind.  You've been given good advice but I know it is hard to take one day at a time at this point. 

        Good luck, Terra

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        LynnLuc
        Participant

        I don't draw a line..I have stage 4 melanoma….I was told by 3 oncologists ( one being a radiation oncologist) I would be dead in 6-9 months…had I accepted their plan for me I would be dead…plan and simple…=:o)..Sure I was told by friends etc too that I should just do what the doctors say…accept it and not live in denial…I am two years now at stage 4 and 1 year at NED…

        Besides the creator who loves me more then I do? . If I don't advocate for myself …who  will?  People forget that oncologists and surgeons etc are not their close friends and not one of them know what treatment will benefit me…each patient with melanoma is unique and what treatment or treatments might work for them is never known until it's tried.

        Most oncologists do not know how to treat melanoma anyway…they need to specialize in melanoma to know melanoma…just my 2 cents!!-

        Lynn :o)

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        LynnLuc
        Participant

        I don't draw a line..I have stage 4 melanoma….I was told by 3 oncologists ( one being a radiation oncologist) I would be dead in 6-9 months…had I accepted their plan for me I would be dead…plan and simple…=:o)..Sure I was told by friends etc too that I should just do what the doctors say…accept it and not live in denial…I am two years now at stage 4 and 1 year at NED…

        Besides the creator who loves me more then I do? . If I don't advocate for myself …who  will?  People forget that oncologists and surgeons etc are not their close friends and not one of them know what treatment will benefit me…each patient with melanoma is unique and what treatment or treatments might work for them is never known until it's tried.

        Most oncologists do not know how to treat melanoma anyway…they need to specialize in melanoma to know melanoma…just my 2 cents!!-

        Lynn :o)

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        Leigh
        Participant

        Thanks Lynn, I just read your bio.  I do wonder where you draw the line with advocating for your own treatment.  It is hard to know when to leave things and just accept a doctors opinion at face value.  (I have been told by family, husbands boss etc to take surgeons opinion today and just forget about it all – ie no follow-up with scans or anything other than usual skin examinations).  Good on you for following through on things yourself when you have been worried.  I have felt like I am overly anxious and I am hoping that is for good reason but I do not want to miss anything and not have the best treatment possible.

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      LynnLuc
      Participant

      Sometimes you have an infection and it shows up in the lymph nodes…and may well not be anything  and the  haemangioma in the liver ( if that is what it is) is usually  non cancerous…I think it's odd they sent the results to you though…-Lynn

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      CKasper
      Participant

      Hi,

      I was diagnosed with malignant melanoma in 1984, two moles one on my right arm and one on my right leg.  Both were removed.  The right arm was done with a wide excision.  In those days they sent me to a plastic surgeon for treatment and I was very young and scared and after they were removed I did not go back for any further treatment.  After a couple of years I went to the dermatologist every year for screening.  I was told in 2004 I was 20 years out and cured.  In 2005 I had a lump the size of a golf ball under my arm.  It grew pretty fast, from a bean sized lump to the golf ball size in about 2 months.  I was being monitored because I had an infection in my lungs, so they thought it might have been a reaction to the infection since I was considered cured.

      I had a biopsy done and the surgeon told me he thought I had lymphoma because the tumor did not look like melanoma, however when the lab results came back it was the dreaded beast.  I then had more surgery to remove 25 lymph nodes and to go on high dose interferon.  I tried the interferon and I couldn't go through it and opted for no treatment.

      In the summer of 2006 CT results were sent to me which showed 7 lesions in  my body.  So I was in a panic.  My Doc told me they were very small and not to be worried.  In Jan 2007 I had another scan which showed no lesions.  In the winter of 2009 I had a pet scan that showed a hot spot in my upper colon and in the winter of 2010 I had an upper colonoscopy which said I was clear. 

      After a bunch of health issues in 2010, some life threatening, I had another scan in the fall of 2010 which was clear so I am considered NED after 5 years.  However now I have a lump on my back.

      I guess what I am trying to convey is this disease is up and down.  I guess I'm lucky.  But its no picnic. 

      Try not to worry too much until you talk to your doctor.

      C

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        Leigh
        Participant

        Hi all,

        thank you for your replies, they have been very helpful.  I spoke with the main radiologist with the PET centre here today (this is a brand new centre in my country, PET has only been here 1-2 years so there is limited experience).  I was somewhat reassured by him that false positives wont be a significant issue and in any case the lymph node in question isn't too far from the surface and could have an FNA…although I have read here people are leery of this….didn't think of this!!).

        Anyway, I have been pretty freaked out by the radiologists comments as he also looked at my scan while he was talking with me and although he measured one of the nodes as 1mm rather than 1.1mm (he said this is very hard to differentiate), he felt the morphology of one of the nodes in my groin looked "suspicious".  he said it twice.  He said he would go ahead and do the scan for sure. 

        I cant understand how this could happen as I had a negative SLNB, the surgeon is an excellent technician and very experienced from all accounts, and I had the pathology slides of the node and tumour read twice by experienced dermatopathologists.  I read one study indicating that a large number of false negative SLNB's were due to pathology report error (probably a study done by the surgeons). 

        Anyway, my scan is booked for next Thursday.  Apparently I can just stay away from my baby for 2 hours after the radiation dose, I cant feed for 6 hours after the dose because of the contrast.  I've ordered a couple of bottles that apparently might help but I suspect she will just go ona  strike.  I really really hope that these instructions are reasonable.  When I spoke with the department today they said that I should have avoided feeding for 24h after the CT – this is their policy!  I said that isn't what I was told by two radiologists and they said to feed straight away and the tech checked and said oh yes that was true.  Who knows what I should believe about this.  Just another conflicting opinion. 

        Thanks and I look forward to reading your responses.  I really appreciate your input and know that I have been really hogging this board!

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        Carol Taylor
        Participant

        Should we respond in Pig Latin?

        I haven't heard any oinking so relax, you're not hogging anything. And while you're relaxing about that, don't go getting freaky on us about the other. Your scan will be done soon enough and hopefully you'll get some concrete answers.

        Alll I want to say is to address your nursing dilemma, being told two different things.  I'll level with you, I'm sure your heart really wants to go with the 2 rads that said go right ahead and resume nursing after 2 hours.  The thing is the other person has already planted the seed to wait 24…an additional 22 hours, not the end of the world.  Because that seed has been planted, if you don't wait 24 hours and baby gets even a fever within the next few years, I have the feeling you're the kind of Mom that's going to look back and wonder if baby is sick because you didn't wait long enough after your scan 10 years ago (many Moms would do that, as well as me, so that's not a put down, that's the way we moms can think).

        Just to avoid that and that alone, the potential unmerited guilt, you might want to prepare to wait the 24 hours. Even if your daughter goes on a hunger strike, which I doubt will last 24 hours, she'll live through it and you'll have peace of mind.  Something to think about.

        Grace and peace,

        Carol

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        Leigh
        Participant

        Hi all,

        I hope this is the right place to update my story. Thank you all so much for your help and advice over the past couple of weeks, it has been really amazing to have such a network of people who write back so quickly and who really understand.

        I had the PETCT (badly claustrophobic so had some hypnoval and the tech sat with me so was overall a relatively pleasant experience).  My wee baby never did manage a bottle before the day of the scan, but miraculously drank from the bottle enough to get her through for 24 hours!  I was so relieved about that.  You were right Carol that I am the type of mum who needed to be as conservative as possible and it was only because of your post that I could see that through all the panic – I would have been regretting it now otherwise.

        I finally got the PETCT results and everything was clear so I need to move on and start living my life again (whilst continuing to monitor myself, safe sun etc!).  I promised myself though on the way to this meeting that I will make an impact on awareness and research/treatment for this misunderstood cancer no matter what.  I have yet to work out how I will do this most effectively but I promise you I will do. 

        Best wishes to you all.

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        Leigh
        Participant

        Hi all,

        I hope this is the right place to update my story. Thank you all so much for your help and advice over the past couple of weeks, it has been really amazing to have such a network of people who write back so quickly and who really understand.

        I had the PETCT (badly claustrophobic so had some hypnoval and the tech sat with me so was overall a relatively pleasant experience).  My wee baby never did manage a bottle before the day of the scan, but miraculously drank from the bottle enough to get her through for 24 hours!  I was so relieved about that.  You were right Carol that I am the type of mum who needed to be as conservative as possible and it was only because of your post that I could see that through all the panic – I would have been regretting it now otherwise.

        I finally got the PETCT results and everything was clear so I need to move on and start living my life again (whilst continuing to monitor myself, safe sun etc!).  I promised myself though on the way to this meeting that I will make an impact on awareness and research/treatment for this misunderstood cancer no matter what.  I have yet to work out how I will do this most effectively but I promise you I will do. 

        Best wishes to you all.

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        MichaelFL
        Participant

        Good, glad to hear it! Enjoy your wee ones!

        I always wanted to go to New Zealand, looks beatuiful. North Shore seems like a great place to live. 141 KM of coastline, and lots of businesses.

        Michael stage 1b

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        MichaelFL
        Participant

        Good, glad to hear it! Enjoy your wee ones!

        I always wanted to go to New Zealand, looks beatuiful. North Shore seems like a great place to live. 141 KM of coastline, and lots of businesses.

        Michael stage 1b

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        Carol Taylor
        Participant

        Yea Leigh!  And Yea baby girl!  Never underestimate the will to survive!  Even and infant isn't going to hungry but so long without finally giving in and taking what's offered.

        I'm really delighted for your entire family with this news!  You've learned more lessons through this than you'll ever realize and you're tougher than you ever knew. As for advocacy, it's been handed to you on a silver platter with your two little girls.  A prime place to start in training them with sun-smarts and keeping a check on their own skin & moles (without obsessing about it, just common sense stuff).   Doors will open as people become aware of your story and as you look for avenues to share.

        Take care and stay in touch.  All the best to you and your family!  Lots of happy dancing going on on this board lately!

        Grace and peace,

        Carol

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        Carol Taylor
        Participant

        Yea Leigh!  And Yea baby girl!  Never underestimate the will to survive!  Even and infant isn't going to hungry but so long without finally giving in and taking what's offered.

        I'm really delighted for your entire family with this news!  You've learned more lessons through this than you'll ever realize and you're tougher than you ever knew. As for advocacy, it's been handed to you on a silver platter with your two little girls.  A prime place to start in training them with sun-smarts and keeping a check on their own skin & moles (without obsessing about it, just common sense stuff).   Doors will open as people become aware of your story and as you look for avenues to share.

        Take care and stay in touch.  All the best to you and your family!  Lots of happy dancing going on on this board lately!

        Grace and peace,

        Carol

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        Carol Taylor
        Participant

        Should we respond in Pig Latin?

        I haven't heard any oinking so relax, you're not hogging anything. And while you're relaxing about that, don't go getting freaky on us about the other. Your scan will be done soon enough and hopefully you'll get some concrete answers.

        Alll I want to say is to address your nursing dilemma, being told two different things.  I'll level with you, I'm sure your heart really wants to go with the 2 rads that said go right ahead and resume nursing after 2 hours.  The thing is the other person has already planted the seed to wait 24…an additional 22 hours, not the end of the world.  Because that seed has been planted, if you don't wait 24 hours and baby gets even a fever within the next few years, I have the feeling you're the kind of Mom that's going to look back and wonder if baby is sick because you didn't wait long enough after your scan 10 years ago (many Moms would do that, as well as me, so that's not a put down, that's the way we moms can think).

        Just to avoid that and that alone, the potential unmerited guilt, you might want to prepare to wait the 24 hours. Even if your daughter goes on a hunger strike, which I doubt will last 24 hours, she'll live through it and you'll have peace of mind.  Something to think about.

        Grace and peace,

        Carol

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        Leigh
        Participant

        Hi all,

        thank you for your replies, they have been very helpful.  I spoke with the main radiologist with the PET centre here today (this is a brand new centre in my country, PET has only been here 1-2 years so there is limited experience).  I was somewhat reassured by him that false positives wont be a significant issue and in any case the lymph node in question isn't too far from the surface and could have an FNA…although I have read here people are leery of this….didn't think of this!!).

        Anyway, I have been pretty freaked out by the radiologists comments as he also looked at my scan while he was talking with me and although he measured one of the nodes as 1mm rather than 1.1mm (he said this is very hard to differentiate), he felt the morphology of one of the nodes in my groin looked "suspicious".  he said it twice.  He said he would go ahead and do the scan for sure. 

        I cant understand how this could happen as I had a negative SLNB, the surgeon is an excellent technician and very experienced from all accounts, and I had the pathology slides of the node and tumour read twice by experienced dermatopathologists.  I read one study indicating that a large number of false negative SLNB's were due to pathology report error (probably a study done by the surgeons). 

        Anyway, my scan is booked for next Thursday.  Apparently I can just stay away from my baby for 2 hours after the radiation dose, I cant feed for 6 hours after the dose because of the contrast.  I've ordered a couple of bottles that apparently might help but I suspect she will just go ona  strike.  I really really hope that these instructions are reasonable.  When I spoke with the department today they said that I should have avoided feeding for 24h after the CT – this is their policy!  I said that isn't what I was told by two radiologists and they said to feed straight away and the tech checked and said oh yes that was true.  Who knows what I should believe about this.  Just another conflicting opinion. 

        Thanks and I look forward to reading your responses.  I really appreciate your input and know that I have been really hogging this board!

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      CKasper
      Participant

      Hi,

      I was diagnosed with malignant melanoma in 1984, two moles one on my right arm and one on my right leg.  Both were removed.  The right arm was done with a wide excision.  In those days they sent me to a plastic surgeon for treatment and I was very young and scared and after they were removed I did not go back for any further treatment.  After a couple of years I went to the dermatologist every year for screening.  I was told in 2004 I was 20 years out and cured.  In 2005 I had a lump the size of a golf ball under my arm.  It grew pretty fast, from a bean sized lump to the golf ball size in about 2 months.  I was being monitored because I had an infection in my lungs, so they thought it might have been a reaction to the infection since I was considered cured.

      I had a biopsy done and the surgeon told me he thought I had lymphoma because the tumor did not look like melanoma, however when the lab results came back it was the dreaded beast.  I then had more surgery to remove 25 lymph nodes and to go on high dose interferon.  I tried the interferon and I couldn't go through it and opted for no treatment.

      In the summer of 2006 CT results were sent to me which showed 7 lesions in  my body.  So I was in a panic.  My Doc told me they were very small and not to be worried.  In Jan 2007 I had another scan which showed no lesions.  In the winter of 2009 I had a pet scan that showed a hot spot in my upper colon and in the winter of 2010 I had an upper colonoscopy which said I was clear. 

      After a bunch of health issues in 2010, some life threatening, I had another scan in the fall of 2010 which was clear so I am considered NED after 5 years.  However now I have a lump on my back.

      I guess what I am trying to convey is this disease is up and down.  I guess I'm lucky.  But its no picnic. 

      Try not to worry too much until you talk to your doctor.

      C

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