› Forums › General Melanoma Community › Tests?
- This topic has 26 replies, 5 voices, and was last updated 14 years, 6 months ago by
Lisa13.
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- July 9, 2011 at 9:55 pm
Hi All,
Hi All,
I had a couple questions about tests that should be done to determine if the Melanoma has spread. At this point I've had my surgery, SLN which was negative. I just had PET Scan and Brain MRI and they came back clear. I'm going to see specialists at the Northern California Melaonoma Center in San Francisco either this Wednesday or next. But I have yet to see an oncologist. My tumor was breslow depth 14mm clarks level V and ulcerated. My stage is IIC with a high risk of recurrence. My questions are what other tests should I have done? What about a LDH level in my blood? Shouldn't this be done? What if the Melanoma went to the bone? This is concerning to me because my MM was on my chest wall. Also someone told me that PET scans can't detect tumors smaller than 5mm. Is this true? How often do you get PET's in the first year? Thanks for all your help!!
Denise
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- July 9, 2011 at 10:11 pm
Hi Denise,
First of all, congrats on being NED and having a negative SLN. This is great news for you! My tumour was 22 MM deep and was in 1 node. I also had PETSCAN's before my surgery and aside from the lymph node, was NED – thank GOD!
You're right, PETSCANS can't see anything microspocic. I advanced to Stage 4 in 2 months because I obviously had cells that were already growing and likely the tumour debth made it's way into my bloodstream. Didn't you get your LDH levels tested with all your other blood work? You should be able to get a copy of all your tests and I would recommend you do all the time. PETSCANS arn't done as often as CT scans, since the CT scans see more than PETSCANS. I've already had 3 CT scans since February and only 1 PETSCAN. You will likely be scanned every 3 months and have blood work taken. Trust me, you'll be watched like a hawk in this journey 🙂
For now you have to focus on the fact that you are NED. Despite what may or may not be going on in your body, you can't focus on the "what if's" because it will drive you crazy. Since your tumour debth is concerning, I would consider a trial with Yervoy or something that boosts your immune system. At the time when I was Stage 3C, deep tumour with ulceration, I went into a trial immediately to try to fend this off since I know it was likely in my blood. Being monitored very closely will help keep an eye on things.
Congrats on your NED status – hang in there and stay positive 🙂
Lisa
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- July 9, 2011 at 10:11 pm
Hi Denise,
First of all, congrats on being NED and having a negative SLN. This is great news for you! My tumour was 22 MM deep and was in 1 node. I also had PETSCAN's before my surgery and aside from the lymph node, was NED – thank GOD!
You're right, PETSCANS can't see anything microspocic. I advanced to Stage 4 in 2 months because I obviously had cells that were already growing and likely the tumour debth made it's way into my bloodstream. Didn't you get your LDH levels tested with all your other blood work? You should be able to get a copy of all your tests and I would recommend you do all the time. PETSCANS arn't done as often as CT scans, since the CT scans see more than PETSCANS. I've already had 3 CT scans since February and only 1 PETSCAN. You will likely be scanned every 3 months and have blood work taken. Trust me, you'll be watched like a hawk in this journey 🙂
For now you have to focus on the fact that you are NED. Despite what may or may not be going on in your body, you can't focus on the "what if's" because it will drive you crazy. Since your tumour debth is concerning, I would consider a trial with Yervoy or something that boosts your immune system. At the time when I was Stage 3C, deep tumour with ulceration, I went into a trial immediately to try to fend this off since I know it was likely in my blood. Being monitored very closely will help keep an eye on things.
Congrats on your NED status – hang in there and stay positive 🙂
Lisa
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- July 9, 2011 at 11:17 pm
Hi Lisa,
I remember you had a nodular melanoma just like me, but your's was deeper. I haven't had any blood work done yet. I think part of the reason I'm kind of lost in this is because I haven't seen anyone besides my surgeon. He's awesome but not an oncologist. I'm really looking forward to going to San Francisco to ask all the specialists what tests can be done or should be done. I asked for my LDH blood work but never got it. My surgeon talked about my case at a tumor board and they all recommended a PET and MRI as the next step. I think I'm gonna call Monday and ask if he can order that LDH test. After I go to San Francisco I'm getting referred to a local oncologist. I suppose then that I'll be better taken care of. It's just confusing that they would order a test that doesn't detect distant Melanoma unless it's a large tumor!! I try not to drive myself crazy with the "what ifs" but it's the nature of the beast I suppose. I just want to be sure that I'm being taken care of properly, I'm sure my questions will soon have all the answers!! Thanks for your help!!
Denise
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- July 9, 2011 at 11:17 pm
Hi Lisa,
I remember you had a nodular melanoma just like me, but your's was deeper. I haven't had any blood work done yet. I think part of the reason I'm kind of lost in this is because I haven't seen anyone besides my surgeon. He's awesome but not an oncologist. I'm really looking forward to going to San Francisco to ask all the specialists what tests can be done or should be done. I asked for my LDH blood work but never got it. My surgeon talked about my case at a tumor board and they all recommended a PET and MRI as the next step. I think I'm gonna call Monday and ask if he can order that LDH test. After I go to San Francisco I'm getting referred to a local oncologist. I suppose then that I'll be better taken care of. It's just confusing that they would order a test that doesn't detect distant Melanoma unless it's a large tumor!! I try not to drive myself crazy with the "what ifs" but it's the nature of the beast I suppose. I just want to be sure that I'm being taken care of properly, I'm sure my questions will soon have all the answers!! Thanks for your help!!
Denise
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- July 9, 2011 at 11:39 pm
Denise,
Of what I am reading, LDH is routinely performed before or during treatment for advanced melanoma;I am not sure the test is assigned/useful in early stages like 2c as LDH is as a general indicator of the existence and severity of acute tissue damage associated with late stages.
associated with late stages cancers.
Please also note that there are a lots of medical conditions that can be associated with elevated levels of izoenzimes that indicate a tissue damage:liver disease, kidney disiease, high blood pressure,use of drug/alcohol etc.
Yes, I know you worry a lot "what if" the cancer had gone into vital organs, I worry too every day about it , but remember we can't let this fear dominate our lives and some things are beyond our control.What will be will be.We can only hope and pray for the best possible outcome.
Best regards,
Teodora
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- July 9, 2011 at 11:39 pm
Denise,
Of what I am reading, LDH is routinely performed before or during treatment for advanced melanoma;I am not sure the test is assigned/useful in early stages like 2c as LDH is as a general indicator of the existence and severity of acute tissue damage associated with late stages.
associated with late stages cancers.
Please also note that there are a lots of medical conditions that can be associated with elevated levels of izoenzimes that indicate a tissue damage:liver disease, kidney disiease, high blood pressure,use of drug/alcohol etc.
Yes, I know you worry a lot "what if" the cancer had gone into vital organs, I worry too every day about it , but remember we can't let this fear dominate our lives and some things are beyond our control.What will be will be.We can only hope and pray for the best possible outcome.
Best regards,
Teodora
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- July 9, 2011 at 11:07 pm
Hi Denise,
Congratulations on the clear scans.Great news.
Yes, unfortunately PET scans do not show tumour less than 6 mm-I've had clear PET scan in March and reccurence confirmed shortly afterwards on May, 5th 2011- 2mm in the area of the original surgery, no lymph nodes initially involved so they assumed blood vessels route which bumped me up to 3b.
Please note that ulceration plays an important factor in determining if the melanoma may have spread:the melanoma tends to have a worst prognosis if the pathologist says it is ulcerated/the outermost layer of the skin is absent/.
Make sure they check this out.Good luck with your appointment.
Teodora
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- July 9, 2011 at 11:07 pm
Hi Denise,
Congratulations on the clear scans.Great news.
Yes, unfortunately PET scans do not show tumour less than 6 mm-I've had clear PET scan in March and reccurence confirmed shortly afterwards on May, 5th 2011- 2mm in the area of the original surgery, no lymph nodes initially involved so they assumed blood vessels route which bumped me up to 3b.
Please note that ulceration plays an important factor in determining if the melanoma may have spread:the melanoma tends to have a worst prognosis if the pathologist says it is ulcerated/the outermost layer of the skin is absent/.
Make sure they check this out.Good luck with your appointment.
Teodora
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- July 9, 2011 at 11:28 pm
Hi Teodora,
Yes my primary was ulcerated. It was also growing on me for 2 years before I got insurance and could take care of it. When it's ulcerated does that mean that it's likey to spread through blood? I seriously can't wait to get to an oncologist!!
Denise
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- July 9, 2011 at 11:28 pm
Hi Teodora,
Yes my primary was ulcerated. It was also growing on me for 2 years before I got insurance and could take care of it. When it's ulcerated does that mean that it's likey to spread through blood? I seriously can't wait to get to an oncologist!!
Denise
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- July 9, 2011 at 11:45 pm
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- July 9, 2011 at 11:45 pm
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- July 10, 2011 at 12:48 am
Denise,
Hopefully you're next appointment is with a melanoma specialist, not a general oncologist.
I have 15 spots in my lungs and my LDH is 180 – still in the normal range because my tumour burden is low (all under 1cm). LDH would only elevate significantly if there is heavy tumour burden or larger tumours in your organs. Your imaging tests have not shown any tumour burden whatsoever, so your LDH is likely normal at this point. Because you're Stage 2, I don't think LDH is a factor since they only seem to use this test with Stage 4 patients who have already metastasized.
Ulceration carries a worse prognosis, but these are just stats and you can't rely too much on these. (I certainly don't). I had an ulcerated tumour but a low mitotic rate of less than 1 which is rare for a deep tumour. Mitotic rate is good to know because it indicates how quickly the cancer cells are dividing. Since your melanoma was deep, there is a chance it's in your bloodstream, but this doesn't mean it's spreading everywhere. It could take months or sometimes years to come back and you have to hope this is going to be your story.
All the best,
Lisa
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- July 10, 2011 at 12:48 am
Denise,
Hopefully you're next appointment is with a melanoma specialist, not a general oncologist.
I have 15 spots in my lungs and my LDH is 180 – still in the normal range because my tumour burden is low (all under 1cm). LDH would only elevate significantly if there is heavy tumour burden or larger tumours in your organs. Your imaging tests have not shown any tumour burden whatsoever, so your LDH is likely normal at this point. Because you're Stage 2, I don't think LDH is a factor since they only seem to use this test with Stage 4 patients who have already metastasized.
Ulceration carries a worse prognosis, but these are just stats and you can't rely too much on these. (I certainly don't). I had an ulcerated tumour but a low mitotic rate of less than 1 which is rare for a deep tumour. Mitotic rate is good to know because it indicates how quickly the cancer cells are dividing. Since your melanoma was deep, there is a chance it's in your bloodstream, but this doesn't mean it's spreading everywhere. It could take months or sometimes years to come back and you have to hope this is going to be your story.
All the best,
Lisa
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- July 10, 2011 at 1:10 am
Denise,
melanoma is such an individual disease and it goes totally different for every person.So you can get as much information you can get your hands on/compare opinions but that doesn't mean it will apply to your specific case!You might not have recurrence for 20 years, and I sincerely hope that will be your case.Anxiety is normal , it never goes away but I am sure you will be fine, just fine.
Take care,
Teodora
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- July 10, 2011 at 1:10 am
Denise,
melanoma is such an individual disease and it goes totally different for every person.So you can get as much information you can get your hands on/compare opinions but that doesn't mean it will apply to your specific case!You might not have recurrence for 20 years, and I sincerely hope that will be your case.Anxiety is normal , it never goes away but I am sure you will be fine, just fine.
Take care,
Teodora
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- July 10, 2011 at 1:04 am
Lisa,
You last said you started dacarbazine on June 17.Are you still doing this treatment?I hope you are making a good progress with it/responding.How are you feeling generally on it?I've read people saying dacarbazine is not very effective on its own, buy Yervoy after dacarbazine seem to be much more effective than without.
Wishing you all the best.
Teodora
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- July 10, 2011 at 1:04 am
Lisa,
You last said you started dacarbazine on June 17.Are you still doing this treatment?I hope you are making a good progress with it/responding.How are you feeling generally on it?I've read people saying dacarbazine is not very effective on its own, buy Yervoy after dacarbazine seem to be much more effective than without.
Wishing you all the best.
Teodora
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- July 10, 2011 at 11:15 am
Hi Teodora,
I just did my second treatment of dacarbazine on Friday and have been tolerating it quite well. I have CT scans on July 22nd to see how it's doing, so thankfully I will have waited only 6 weeks to see if it's working – rather than 3 months. I have a great oncologist who wants to keep an eye on me to be sure that this cancer doesn't run away. My tumour burden is low meaning my nodules are all between 3mm-8mm, except for 1 that is 11mm. My onc. said that dacarbazine seems to show more activity with people with low tumour burden, so we shall see. If it doesn't work (which I still believe it will!), I will go on Yervoy which has been shown to be quite effective.
I truly hope I can post in 2 weeks my success story with dacarbazine because like all other treatments, there are some responses.
Thanks for the best wishes Teodora. All the very best to you as well!
Lisa
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- July 10, 2011 at 11:15 am
Hi Teodora,
I just did my second treatment of dacarbazine on Friday and have been tolerating it quite well. I have CT scans on July 22nd to see how it's doing, so thankfully I will have waited only 6 weeks to see if it's working – rather than 3 months. I have a great oncologist who wants to keep an eye on me to be sure that this cancer doesn't run away. My tumour burden is low meaning my nodules are all between 3mm-8mm, except for 1 that is 11mm. My onc. said that dacarbazine seems to show more activity with people with low tumour burden, so we shall see. If it doesn't work (which I still believe it will!), I will go on Yervoy which has been shown to be quite effective.
I truly hope I can post in 2 weeks my success story with dacarbazine because like all other treatments, there are some responses.
Thanks for the best wishes Teodora. All the very best to you as well!
Lisa
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- July 10, 2011 at 1:42 am
Denise,
I know this is hard. Watch and wait is something that takes getting used to. My local oncologist tests my LDH but my melanoma specialist does not. This test is used for those with active disease to see if some of the major organs like the kidneys are functioning correctly. The only time my LDH was checked by the specialist was after my numbers were high when checked by the local onc. They were high because I had a drug interaction with my cholesteral medicine and an antibiotic. If you haven't had any blood work done in recent years then you might want a baseline but this is not standard for your stage. They might have tested during your pre-op.
I have had 2 brain MRI's. One was when my disease continued to progress and went to the bladder, the other time when I was having some dizzy issues. Ended up being nothing (allergy related and stress). I have been stage IV for 5 years with 6 recurrances so I am very high risk.
There are some major melanoma centers that only scan if there are symptoms or stage IV. I'm not saying I could handle or agree with that, just that different institutions follow different protocals.
I have had a PET/CT ever 3 months since 06 when I went stage IV. After 2 years I was to go to every 6 months but had progression – scans did not find the progression, I noticed change. When they first noticed lung nodules they did a diagnostic CT to get a clearer picture. I've also had MRI's to help clear up questionable issue on a PET/CT. CT's are usually recommended for those with active disease. PET's are helpful to show overall progression. For example my last 2 metastises have been on the arm, this would not have been seen by a CT. Melanoma to the bone would show up on a PET.
Most drugs are not given unless there is measurable disease to watch. Interfuron is suggested by some oncologists but not all. That is one drug that you could ask about at stage IIC, realize that there are many side effects and benefit is low.
It takes time to adjust, it sounds like your Dr has been proactive, especially by taking all of your info to a tumor board. Let us know what the melanoma specialist has to say.
Linda
Stage IV for 5 years, NED for 5 weeks
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- July 10, 2011 at 1:42 am
Denise,
I know this is hard. Watch and wait is something that takes getting used to. My local oncologist tests my LDH but my melanoma specialist does not. This test is used for those with active disease to see if some of the major organs like the kidneys are functioning correctly. The only time my LDH was checked by the specialist was after my numbers were high when checked by the local onc. They were high because I had a drug interaction with my cholesteral medicine and an antibiotic. If you haven't had any blood work done in recent years then you might want a baseline but this is not standard for your stage. They might have tested during your pre-op.
I have had 2 brain MRI's. One was when my disease continued to progress and went to the bladder, the other time when I was having some dizzy issues. Ended up being nothing (allergy related and stress). I have been stage IV for 5 years with 6 recurrances so I am very high risk.
There are some major melanoma centers that only scan if there are symptoms or stage IV. I'm not saying I could handle or agree with that, just that different institutions follow different protocals.
I have had a PET/CT ever 3 months since 06 when I went stage IV. After 2 years I was to go to every 6 months but had progression – scans did not find the progression, I noticed change. When they first noticed lung nodules they did a diagnostic CT to get a clearer picture. I've also had MRI's to help clear up questionable issue on a PET/CT. CT's are usually recommended for those with active disease. PET's are helpful to show overall progression. For example my last 2 metastises have been on the arm, this would not have been seen by a CT. Melanoma to the bone would show up on a PET.
Most drugs are not given unless there is measurable disease to watch. Interfuron is suggested by some oncologists but not all. That is one drug that you could ask about at stage IIC, realize that there are many side effects and benefit is low.
It takes time to adjust, it sounds like your Dr has been proactive, especially by taking all of your info to a tumor board. Let us know what the melanoma specialist has to say.
Linda
Stage IV for 5 years, NED for 5 weeks
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- July 10, 2011 at 4:15 am
Denise, you have been given excellent advice by everyone who has replied so far.
I would just like to add my thoughts about how melanoma can spread. Once the tumour depth
is over 4.0 mm, there is a strong chance that some melanoma cells have escaped into the
bloodstream. They won't be detected by any tests, and it is up to the immune system to
keep them from colonising new sites. In other words, if the immune system is able to stop
the melanoma cells from forming new lumps then one will have NED (no evidence of disease).Therefore, it is very important to try to keep as healthy as possible while trying to
reduce the harmful effects of stress. It is also wise to be vigilant. If new symptoms
or if any suspicious lumps appear, you will need to see your oncologist without delay.Hope this helps.
Frank from Australia
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- July 10, 2011 at 4:15 am
Denise, you have been given excellent advice by everyone who has replied so far.
I would just like to add my thoughts about how melanoma can spread. Once the tumour depth
is over 4.0 mm, there is a strong chance that some melanoma cells have escaped into the
bloodstream. They won't be detected by any tests, and it is up to the immune system to
keep them from colonising new sites. In other words, if the immune system is able to stop
the melanoma cells from forming new lumps then one will have NED (no evidence of disease).Therefore, it is very important to try to keep as healthy as possible while trying to
reduce the harmful effects of stress. It is also wise to be vigilant. If new symptoms
or if any suspicious lumps appear, you will need to see your oncologist without delay.Hope this helps.
Frank from Australia
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