› Forums › General Melanoma Community › Help with pathology report! Anybody with deep primaries lymph node negative out there? Need hope
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Gene_S.
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- October 2, 2016 at 8:09 pm
Found out I had malignant melanoma and not pyogenic granuloma under my right foot right in between 4th and 5th toe. It had been growing for probably 6-9 months and given the nature of the thing, of course it was ulcerated (most pyogenic granuloma are). So my location is under the foot right at the cushion of flesh supporting 4th and 5th toe which supposedly is thicker (3-4mm) than the forehead flesh (1-2mm). Needless to say it is amelanotic. Type is acral nodular.
My initial pathology report said the following
Peripheral margins: involved in invasive melanoma
Peripheral margins: involved in melanoma in situ
Deep margins: involved in invasive melanoma
Breslow: 2.85mm at least (to base of submitted specimen)
Clark: level 4 at least (to base of submitted specimen)
Ulceration: present, extensive
Mitotic index: 4MF/mm2
Microsatellosis: not identified
Lymphovascular invasion: not identified
Perineural onvasion: not identified
TIL: present, non brisk
Tumor regression: not identified
Growth phase: vertical
Stage: Pt3b
I have underwent the WLE (not accepting amputation of my toes and skin graft is healthy and slowly healing: I think they got approx 2cm almost all around but maybe 4-5mm short beneath the toes particularly the 5th one) and SNB. Surgeon found two uneventful nodes and all was sent to pathology on Sept 9th. Believe it or not, I will likely get my results next Oct 13th… 5 weeks of excrutiating wait. Needless to say, my life has stopped and I have multiple anxiety problems. Girlfriend is as supportive as can be but I've been driving her crazy since the day I received my report on July 13th.
Now, what are, realistically my chances of having a negative lymph node result? I read 20% everywhere but I have looked at stuff on youtube given at the 2015 AimatMelanoma conference (or something like that) that basically said 10 times your Breslow deapth is your chance of finding microcells in your lymph nodes.
Can I have your guidance and wisdom please?
I am in total disbelief… Comments on my report and chances of being stage IIB and not III…
- Replies
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- October 2, 2016 at 9:57 pm
I have no idea what the chances are, I have not heard any statistics myself. My depth was 1.9mm and I had 3 positive lymph nodes (micromet involvement, not visible to the naked eye). I know someone who had 19mm (yes 19, not 1.9) and her lymph nodes were negative for melanoma. I really think it is entirely individual and there is no real way of predicting anything.
With that said, if you do get the results (and what a horrendous wait, so sorry you have to wait so long) and they are positive for melanoma, making you stage 3, try not to stress too much. There's great advancements in treatment and as long as you get treated by a melanoma specialist, then you'll be in good hands with great options. It is all scary at first. I am coming up on my 1 year anniversary of my diagnosis.. it's crazy how fast this year has gone. I've been on Ipi (Yervoy) for adjuvant treatment, and have done well. There's ups and downs and it's a roller coaster none of us want to be on. But, this forum is full of some awesomely knowledgeable people and caring individuals.. we are here for you.
All the best,
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- October 2, 2016 at 9:57 pm
I have no idea what the chances are, I have not heard any statistics myself. My depth was 1.9mm and I had 3 positive lymph nodes (micromet involvement, not visible to the naked eye). I know someone who had 19mm (yes 19, not 1.9) and her lymph nodes were negative for melanoma. I really think it is entirely individual and there is no real way of predicting anything.
With that said, if you do get the results (and what a horrendous wait, so sorry you have to wait so long) and they are positive for melanoma, making you stage 3, try not to stress too much. There's great advancements in treatment and as long as you get treated by a melanoma specialist, then you'll be in good hands with great options. It is all scary at first. I am coming up on my 1 year anniversary of my diagnosis.. it's crazy how fast this year has gone. I've been on Ipi (Yervoy) for adjuvant treatment, and have done well. There's ups and downs and it's a roller coaster none of us want to be on. But, this forum is full of some awesomely knowledgeable people and caring individuals.. we are here for you.
All the best,
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- October 2, 2016 at 10:23 pm
Thank you so much for your answer. Were you at all able to work while on your treatment? This is one of the thing I fear the most since I am self-employed…
Also, did you have a high mitotic rate? Ulcerated? What is a higg mitotic rate anyway??? Mine is 4. Is that high? I know it's more than 1…
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- October 2, 2016 at 10:44 pm
Yes I have been able to work. The only things that hold me back from feeling 100% is fatigue and joint pain. But, they are totally manageable. A lot of people, even at stage 4, on treatment have continued to work full time through their treatments. Just depends on the individual. I have a timeline of my journey in my profile, if it helps to read what I've gone through this past year.. to get some sense from one person's perspective.
Mine was ulcerated and mitotic rate was 2. Yes, 4 is high, but try not to focus so much on the details of the path report. It's easy to get sucked into it and fear the worst and have the cycle of negative thinking go through your head all day. Like I said before, we can only take it one day at a time, and sometimes we have to take it one hour at a time. Try to disctract yourself with hobbies or family time. I've learned how to crochet and play ukulele through all this… I still need things to distract myself from the "what ifs" now and then.
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- October 2, 2016 at 10:44 pm
Yes I have been able to work. The only things that hold me back from feeling 100% is fatigue and joint pain. But, they are totally manageable. A lot of people, even at stage 4, on treatment have continued to work full time through their treatments. Just depends on the individual. I have a timeline of my journey in my profile, if it helps to read what I've gone through this past year.. to get some sense from one person's perspective.
Mine was ulcerated and mitotic rate was 2. Yes, 4 is high, but try not to focus so much on the details of the path report. It's easy to get sucked into it and fear the worst and have the cycle of negative thinking go through your head all day. Like I said before, we can only take it one day at a time, and sometimes we have to take it one hour at a time. Try to disctract yourself with hobbies or family time. I've learned how to crochet and play ukulele through all this… I still need things to distract myself from the "what ifs" now and then.
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- October 2, 2016 at 10:44 pm
Yes I have been able to work. The only things that hold me back from feeling 100% is fatigue and joint pain. But, they are totally manageable. A lot of people, even at stage 4, on treatment have continued to work full time through their treatments. Just depends on the individual. I have a timeline of my journey in my profile, if it helps to read what I've gone through this past year.. to get some sense from one person's perspective.
Mine was ulcerated and mitotic rate was 2. Yes, 4 is high, but try not to focus so much on the details of the path report. It's easy to get sucked into it and fear the worst and have the cycle of negative thinking go through your head all day. Like I said before, we can only take it one day at a time, and sometimes we have to take it one hour at a time. Try to disctract yourself with hobbies or family time. I've learned how to crochet and play ukulele through all this… I still need things to distract myself from the "what ifs" now and then.
-
- October 2, 2016 at 10:23 pm
Thank you so much for your answer. Were you at all able to work while on your treatment? This is one of the thing I fear the most since I am self-employed…
Also, did you have a high mitotic rate? Ulcerated? What is a higg mitotic rate anyway??? Mine is 4. Is that high? I know it's more than 1…
-
- October 2, 2016 at 10:23 pm
Thank you so much for your answer. Were you at all able to work while on your treatment? This is one of the thing I fear the most since I am self-employed…
Also, did you have a high mitotic rate? Ulcerated? What is a higg mitotic rate anyway??? Mine is 4. Is that high? I know it's more than 1…
-
- October 2, 2016 at 9:57 pm
I have no idea what the chances are, I have not heard any statistics myself. My depth was 1.9mm and I had 3 positive lymph nodes (micromet involvement, not visible to the naked eye). I know someone who had 19mm (yes 19, not 1.9) and her lymph nodes were negative for melanoma. I really think it is entirely individual and there is no real way of predicting anything.
With that said, if you do get the results (and what a horrendous wait, so sorry you have to wait so long) and they are positive for melanoma, making you stage 3, try not to stress too much. There's great advancements in treatment and as long as you get treated by a melanoma specialist, then you'll be in good hands with great options. It is all scary at first. I am coming up on my 1 year anniversary of my diagnosis.. it's crazy how fast this year has gone. I've been on Ipi (Yervoy) for adjuvant treatment, and have done well. There's ups and downs and it's a roller coaster none of us want to be on. But, this forum is full of some awesomely knowledgeable people and caring individuals.. we are here for you.
All the best,
-
- October 2, 2016 at 9:58 pm
I would like to add that in the mean time I have had a PET negative showing only original acral site on the report SUVmax 2.0 and a CT scan negative for mets also. Those date back Aug 5th and 12th.
Is it fair to say that I am still met-free as of now? And if so, until when resonnably?
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- October 2, 2016 at 10:02 pm
Yes, that's fair to say. Again, there's no way to say "until when". Could be never, could be a year, could be 6 months, could be 10 years…. honestly, I know it is frustrating not to have a timeline of what to expect… but there really isn't one. We've all experienced our melanoma journey in very different ways with different timelines. One step at a time. Your results wait time is terrible, and I would stress out if I had to wait that long too. But, all any of us can do is take it one day at a time, remember that you're still alive and not dying 🙂
Wish there was a better answer… I would love one myself.
Take care.
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- October 2, 2016 at 10:02 pm
Yes, that's fair to say. Again, there's no way to say "until when". Could be never, could be a year, could be 6 months, could be 10 years…. honestly, I know it is frustrating not to have a timeline of what to expect… but there really isn't one. We've all experienced our melanoma journey in very different ways with different timelines. One step at a time. Your results wait time is terrible, and I would stress out if I had to wait that long too. But, all any of us can do is take it one day at a time, remember that you're still alive and not dying 🙂
Wish there was a better answer… I would love one myself.
Take care.
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- October 2, 2016 at 10:30 pm
Thank you Jenn. I am trying to take it as it comes but find myself pretty much unable to at the moment. I, like many here, am a father and I simply cannot entertain the thought of leaving my child behind.
Any real long term stage 3 people alive? I mean more than 10 years?
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- October 2, 2016 at 10:39 pm
I know there are a lot of stage 3 people that have lived a long and healthy life. Unfortunately, they don't come to a place like this anymore, because they just don't need to. Now, with the new adjuvant treatments coming out, more and more of stage 3ers will be living long and healthy lives!
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- October 2, 2016 at 10:39 pm
I know there are a lot of stage 3 people that have lived a long and healthy life. Unfortunately, they don't come to a place like this anymore, because they just don't need to. Now, with the new adjuvant treatments coming out, more and more of stage 3ers will be living long and healthy lives!
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- October 2, 2016 at 10:39 pm
I know there are a lot of stage 3 people that have lived a long and healthy life. Unfortunately, they don't come to a place like this anymore, because they just don't need to. Now, with the new adjuvant treatments coming out, more and more of stage 3ers will be living long and healthy lives!
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- October 3, 2016 at 10:49 am
My father-in-law was diagnosd in 1979 with stage three melanoma– his primary wasblying close to his 3rd and 4th toes and had extensive lymphnode involvement in his groin. Hewill be turning 84 on his next birthday in February. So yes, there are some very long term survivors!
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- October 3, 2016 at 2:04 pm
Thanks for the info.
May I ask if the tumor was on the front or underneath the foot? Was it so close to the toes that he was offered amputation? How deep was the primary lesion? Did he experience any recurrences over the years? local? What type of therapy did he take? Any surgeries also? And finally, what about metastases?
I know it's a lot; maybe you dont know half of the story but I meant to ask anyway
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- October 3, 2016 at 2:04 pm
Thanks for the info.
May I ask if the tumor was on the front or underneath the foot? Was it so close to the toes that he was offered amputation? How deep was the primary lesion? Did he experience any recurrences over the years? local? What type of therapy did he take? Any surgeries also? And finally, what about metastases?
I know it's a lot; maybe you dont know half of the story but I meant to ask anyway
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- October 3, 2016 at 2:04 pm
Thanks for the info.
May I ask if the tumor was on the front or underneath the foot? Was it so close to the toes that he was offered amputation? How deep was the primary lesion? Did he experience any recurrences over the years? local? What type of therapy did he take? Any surgeries also? And finally, what about metastases?
I know it's a lot; maybe you dont know half of the story but I meant to ask anyway
-
- October 3, 2016 at 10:49 am
My father-in-law was diagnosd in 1979 with stage three melanoma– his primary wasblying close to his 3rd and 4th toes and had extensive lymphnode involvement in his groin. Hewill be turning 84 on his next birthday in February. So yes, there are some very long term survivors!
-
- October 3, 2016 at 10:49 am
My father-in-law was diagnosd in 1979 with stage three melanoma– his primary wasblying close to his 3rd and 4th toes and had extensive lymphnode involvement in his groin. Hewill be turning 84 on his next birthday in February. So yes, there are some very long term survivors!
-
- October 2, 2016 at 10:30 pm
Thank you Jenn. I am trying to take it as it comes but find myself pretty much unable to at the moment. I, like many here, am a father and I simply cannot entertain the thought of leaving my child behind.
Any real long term stage 3 people alive? I mean more than 10 years?
-
- October 2, 2016 at 10:30 pm
Thank you Jenn. I am trying to take it as it comes but find myself pretty much unable to at the moment. I, like many here, am a father and I simply cannot entertain the thought of leaving my child behind.
Any real long term stage 3 people alive? I mean more than 10 years?
-
- October 3, 2016 at 2:35 am
That is quite the debate these days. There was a study done showing there was no difference in patience who did the lymph node dissection and those that did not. My specialist did not suggest it, and plus, I decided to start treatment right away, so I didn't want to deal with the possible complications of a dissection… like life long lymphedema and all of that.
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- October 3, 2016 at 2:35 am
That is quite the debate these days. There was a study done showing there was no difference in patience who did the lymph node dissection and those that did not. My specialist did not suggest it, and plus, I decided to start treatment right away, so I didn't want to deal with the possible complications of a dissection… like life long lymphedema and all of that.
-
- October 3, 2016 at 2:35 am
That is quite the debate these days. There was a study done showing there was no difference in patience who did the lymph node dissection and those that did not. My specialist did not suggest it, and plus, I decided to start treatment right away, so I didn't want to deal with the possible complications of a dissection… like life long lymphedema and all of that.
-
- October 2, 2016 at 10:02 pm
Yes, that's fair to say. Again, there's no way to say "until when". Could be never, could be a year, could be 6 months, could be 10 years…. honestly, I know it is frustrating not to have a timeline of what to expect… but there really isn't one. We've all experienced our melanoma journey in very different ways with different timelines. One step at a time. Your results wait time is terrible, and I would stress out if I had to wait that long too. But, all any of us can do is take it one day at a time, remember that you're still alive and not dying 🙂
Wish there was a better answer… I would love one myself.
Take care.
-
- October 2, 2016 at 9:58 pm
I would like to add that in the mean time I have had a PET negative showing only original acral site on the report SUVmax 2.0 and a CT scan negative for mets also. Those date back Aug 5th and 12th.
Is it fair to say that I am still met-free as of now? And if so, until when resonnably?
-
- October 2, 2016 at 9:58 pm
I would like to add that in the mean time I have had a PET negative showing only original acral site on the report SUVmax 2.0 and a CT scan negative for mets also. Those date back Aug 5th and 12th.
Is it fair to say that I am still met-free as of now? And if so, until when resonnably?
-
- October 3, 2016 at 12:47 am
I had a primary of 4.5mm on lower lip. It was also amelonotic and in my lip at least two years before diagnosis back in 2009. I went through three opinions and two of them not so good. My third opinion was from a Melanoma specialist and he staged me at IIb. The previous two opinions put me at stage III. My node biopsy was neg. and was disease free for almost 5 years.
Best, Paul
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- October 3, 2016 at 12:47 am
I had a primary of 4.5mm on lower lip. It was also amelonotic and in my lip at least two years before diagnosis back in 2009. I went through three opinions and two of them not so good. My third opinion was from a Melanoma specialist and he staged me at IIb. The previous two opinions put me at stage III. My node biopsy was neg. and was disease free for almost 5 years.
Best, Paul
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- October 3, 2016 at 12:47 am
I had a primary of 4.5mm on lower lip. It was also amelonotic and in my lip at least two years before diagnosis back in 2009. I went through three opinions and two of them not so good. My third opinion was from a Melanoma specialist and he staged me at IIb. The previous two opinions put me at stage III. My node biopsy was neg. and was disease free for almost 5 years.
Best, Paul
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- October 3, 2016 at 2:50 am
Hi, sorry this has hit you.
I had Nodular melanoma 8.3 mm (from shave so not the full depth, lesion remaining at WLE had depth of 4.5) mitotic rate 10. Had been on my arm for 2+ years. Was not expecting good news.
My lymph nodes following WLE and SNB were clear. t4b n0 stage 2c. I declined interferon and am doing watch and wait. So there is no predicting and good surprises can happen as well.
I wish you swift passage of time and the best possible results. I channeled my anxiety while waiting into long walks and runs, (probably not possible with your location sorry) doing pleasurable things, healthy eating. (And alas, read too much online)
Life is and has always been fragile and uncertain and this heightened awareness can be a good thing in some ways. Even if you require further treatment you will find your way.
Blessings,
joyce
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- October 3, 2016 at 2:50 am
Hi, sorry this has hit you.
I had Nodular melanoma 8.3 mm (from shave so not the full depth, lesion remaining at WLE had depth of 4.5) mitotic rate 10. Had been on my arm for 2+ years. Was not expecting good news.
My lymph nodes following WLE and SNB were clear. t4b n0 stage 2c. I declined interferon and am doing watch and wait. So there is no predicting and good surprises can happen as well.
I wish you swift passage of time and the best possible results. I channeled my anxiety while waiting into long walks and runs, (probably not possible with your location sorry) doing pleasurable things, healthy eating. (And alas, read too much online)
Life is and has always been fragile and uncertain and this heightened awareness can be a good thing in some ways. Even if you require further treatment you will find your way.
Blessings,
joyce
-
- October 3, 2016 at 2:50 am
Hi, sorry this has hit you.
I had Nodular melanoma 8.3 mm (from shave so not the full depth, lesion remaining at WLE had depth of 4.5) mitotic rate 10. Had been on my arm for 2+ years. Was not expecting good news.
My lymph nodes following WLE and SNB were clear. t4b n0 stage 2c. I declined interferon and am doing watch and wait. So there is no predicting and good surprises can happen as well.
I wish you swift passage of time and the best possible results. I channeled my anxiety while waiting into long walks and runs, (probably not possible with your location sorry) doing pleasurable things, healthy eating. (And alas, read too much online)
Life is and has always been fragile and uncertain and this heightened awareness can be a good thing in some ways. Even if you require further treatment you will find your way.
Blessings,
joyce
-
- October 3, 2016 at 12:22 pm
Hi,
I couldn't work out the odds of having involved nodes- but even if you can it doesn't tell you which side of that line any individual will fall. I started as a T1a and with treatment and excision over 95% of individuals are home and free. I fell on the "wrong" side of the line and went on to progress with lymph node involvement 2 years later.
I do understand your impatience. Can you distract yourself in the meantime doing things you enjoy ? Maybe treat your girlfriend to thank her for her support- romantic night out ?
In the greater scheme of things not too long to wait and then you can deal with the certainties .
Hope your results are negative.
If you can't take a deep breath and wait for the results.. then you could spend the time educating yourself on the treatment options you might be offered, so you have more understanding of the options discussed if it is not the news you were hoping for.
Positive lymph nodes would make you stage 3.
There is an ongoing debate about the need for CLND – complete lymph node dissection- maybe not for microscopic disease v maybe yes if macroscopic….some argue go direct to systemic treatment. Lots of info re the debate on this forum. Cancer research Uk has info on this, this site has info on managing a stage 3 diagnosis, and melanoma international foundation has webinars on site and you tube looking at treatment options.
If you are focussed on the next set of news it may be time better spent than trying to quantify the risk…as you can do nothing to change the outcome at this stage. Also, get your vit D levels checked – as managing this into normal range is shown to be helpful on the basis of research.
Good luck
Deb
.
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- October 3, 2016 at 12:22 pm
Hi,
I couldn't work out the odds of having involved nodes- but even if you can it doesn't tell you which side of that line any individual will fall. I started as a T1a and with treatment and excision over 95% of individuals are home and free. I fell on the "wrong" side of the line and went on to progress with lymph node involvement 2 years later.
I do understand your impatience. Can you distract yourself in the meantime doing things you enjoy ? Maybe treat your girlfriend to thank her for her support- romantic night out ?
In the greater scheme of things not too long to wait and then you can deal with the certainties .
Hope your results are negative.
If you can't take a deep breath and wait for the results.. then you could spend the time educating yourself on the treatment options you might be offered, so you have more understanding of the options discussed if it is not the news you were hoping for.
Positive lymph nodes would make you stage 3.
There is an ongoing debate about the need for CLND – complete lymph node dissection- maybe not for microscopic disease v maybe yes if macroscopic….some argue go direct to systemic treatment. Lots of info re the debate on this forum. Cancer research Uk has info on this, this site has info on managing a stage 3 diagnosis, and melanoma international foundation has webinars on site and you tube looking at treatment options.
If you are focussed on the next set of news it may be time better spent than trying to quantify the risk…as you can do nothing to change the outcome at this stage. Also, get your vit D levels checked – as managing this into normal range is shown to be helpful on the basis of research.
Good luck
Deb
.
-
- October 3, 2016 at 12:22 pm
Hi,
I couldn't work out the odds of having involved nodes- but even if you can it doesn't tell you which side of that line any individual will fall. I started as a T1a and with treatment and excision over 95% of individuals are home and free. I fell on the "wrong" side of the line and went on to progress with lymph node involvement 2 years later.
I do understand your impatience. Can you distract yourself in the meantime doing things you enjoy ? Maybe treat your girlfriend to thank her for her support- romantic night out ?
In the greater scheme of things not too long to wait and then you can deal with the certainties .
Hope your results are negative.
If you can't take a deep breath and wait for the results.. then you could spend the time educating yourself on the treatment options you might be offered, so you have more understanding of the options discussed if it is not the news you were hoping for.
Positive lymph nodes would make you stage 3.
There is an ongoing debate about the need for CLND – complete lymph node dissection- maybe not for microscopic disease v maybe yes if macroscopic….some argue go direct to systemic treatment. Lots of info re the debate on this forum. Cancer research Uk has info on this, this site has info on managing a stage 3 diagnosis, and melanoma international foundation has webinars on site and you tube looking at treatment options.
If you are focussed on the next set of news it may be time better spent than trying to quantify the risk…as you can do nothing to change the outcome at this stage. Also, get your vit D levels checked – as managing this into normal range is shown to be helpful on the basis of research.
Good luck
Deb
.
-
- October 3, 2016 at 2:30 pm
My husbands depth of his primary was 10.5 and the SNB came back clear. He started out at a 3 B. He refused the dissection which would have been in the neck and shoulder area. He did progress to Stage IV and went into a clinical trial and he has been NED for over 4 years.
If you would like to read more about his journey check out his profile.
Judy (loving wife of Gene Stage IV and now NED for over 4 years)
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- October 3, 2016 at 2:30 pm
My husbands depth of his primary was 10.5 and the SNB came back clear. He started out at a 3 B. He refused the dissection which would have been in the neck and shoulder area. He did progress to Stage IV and went into a clinical trial and he has been NED for over 4 years.
If you would like to read more about his journey check out his profile.
Judy (loving wife of Gene Stage IV and now NED for over 4 years)
-
- October 3, 2016 at 2:30 pm
My husbands depth of his primary was 10.5 and the SNB came back clear. He started out at a 3 B. He refused the dissection which would have been in the neck and shoulder area. He did progress to Stage IV and went into a clinical trial and he has been NED for over 4 years.
If you would like to read more about his journey check out his profile.
Judy (loving wife of Gene Stage IV and now NED for over 4 years)
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Tagged: acral, cutaneous melanoma
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