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

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

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

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

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

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)

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)

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 

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 

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

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

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

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

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

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

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

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

"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

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

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

"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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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)

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)

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

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

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

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

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

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