› Forums › General Melanoma Community › Lung recurrence..advice/comments please…
- This topic has 21 replies, 5 voices, and was last updated 11 years, 7 months ago by
Kimberly Duncan Watts.
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- September 6, 2012 at 12:55 am
I had pet scan last september'11 which revealed a subcentimeter nodule with suv of 2.5, onc. said watch and wait and have ct scan in december'll to check it, no changes in growth so it was diagnosed as "scar tissue". In mid July'12, pet scan revealed that the nodule was now 2 cm with suv of 9 and onc. sent me to lung surgeon and upper left lobe was removed, tumor was removed and no signs of anything else. We got a call 1 week later saying this was not melanoma mets, but early stage primary lung cancer, which was the better diagnosis, better than melanoma anyways.
I had pet scan last september'11 which revealed a subcentimeter nodule with suv of 2.5, onc. said watch and wait and have ct scan in december'll to check it, no changes in growth so it was diagnosed as "scar tissue". In mid July'12, pet scan revealed that the nodule was now 2 cm with suv of 9 and onc. sent me to lung surgeon and upper left lobe was removed, tumor was removed and no signs of anything else. We got a call 1 week later saying this was not melanoma mets, but early stage primary lung cancer, which was the better diagnosis, better than melanoma anyways. Anyway, end of Aug. had follow up visit with onc. and he says diagnosis wasNOT conclusive for melanoma OR lung cancer. Samples of the tumor were sent to another hospital and it was "felt" that it was melanoma. We have no 100% diagnosis either way. We (me/wife) were told either way, it was gone and no need for treatment. Can anyone elaborate what is possible, anyone have a similar situation or any advice/comments to share that might shed some light???? I was diagnosed with melanoma in '08 stage 3a, no promlems until now….thanks…..
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- September 6, 2012 at 1:27 am
I'd consider having the tissue sent elsewhere for another reading or two or three. It seems like the cell types should be different enough to make some "educated guess" anyway. My Dad was stage II melanoma and had a tumor show up in his lungs. We were also glad to find out it was non-small cell lung cancer. His was stage IB and he had high dose radiation for it. To date, it has not recurred. His melanoma, on the other hand, has gone elsewhere. It seems to me that the treatments would be quite different with the exception of a drug in clinical trials (anti-pd1) which is in trials for both melanoma and lung cancer. Treatments like radiation which might work for lung cancer are typically ineffective for melanoma. So if there was any way to get a good reading on the tissue (send to a major cancer center maybe), I'd go that route.
Best wishes,
Janner
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- September 6, 2012 at 1:27 am
I'd consider having the tissue sent elsewhere for another reading or two or three. It seems like the cell types should be different enough to make some "educated guess" anyway. My Dad was stage II melanoma and had a tumor show up in his lungs. We were also glad to find out it was non-small cell lung cancer. His was stage IB and he had high dose radiation for it. To date, it has not recurred. His melanoma, on the other hand, has gone elsewhere. It seems to me that the treatments would be quite different with the exception of a drug in clinical trials (anti-pd1) which is in trials for both melanoma and lung cancer. Treatments like radiation which might work for lung cancer are typically ineffective for melanoma. So if there was any way to get a good reading on the tissue (send to a major cancer center maybe), I'd go that route.
Best wishes,
Janner
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- September 6, 2012 at 1:27 am
I'd consider having the tissue sent elsewhere for another reading or two or three. It seems like the cell types should be different enough to make some "educated guess" anyway. My Dad was stage II melanoma and had a tumor show up in his lungs. We were also glad to find out it was non-small cell lung cancer. His was stage IB and he had high dose radiation for it. To date, it has not recurred. His melanoma, on the other hand, has gone elsewhere. It seems to me that the treatments would be quite different with the exception of a drug in clinical trials (anti-pd1) which is in trials for both melanoma and lung cancer. Treatments like radiation which might work for lung cancer are typically ineffective for melanoma. So if there was any way to get a good reading on the tissue (send to a major cancer center maybe), I'd go that route.
Best wishes,
Janner
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- September 6, 2012 at 12:45 pm
Thanks Janner….That is what is so unsettlng about my diagnosis, or lack thereof. If niether facility can give a 100% sure diagnosis, should anything happen in the future that treatment is needed, then how do they decide upon which treatment is appropriate? I guess samples/biopsies and testing would be required. Anyway, I just wished there had been a very conclusive name given instead of a guess. I just assumed in the medical field, cancer in particular that the technology and testing nowadays wouldn't leave any unanswered questions. Thanks Janner for your valued input. 🙂
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- September 6, 2012 at 12:45 pm
Thanks Janner….That is what is so unsettlng about my diagnosis, or lack thereof. If niether facility can give a 100% sure diagnosis, should anything happen in the future that treatment is needed, then how do they decide upon which treatment is appropriate? I guess samples/biopsies and testing would be required. Anyway, I just wished there had been a very conclusive name given instead of a guess. I just assumed in the medical field, cancer in particular that the technology and testing nowadays wouldn't leave any unanswered questions. Thanks Janner for your valued input. 🙂
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- September 6, 2012 at 12:45 pm
Thanks Janner….That is what is so unsettlng about my diagnosis, or lack thereof. If niether facility can give a 100% sure diagnosis, should anything happen in the future that treatment is needed, then how do they decide upon which treatment is appropriate? I guess samples/biopsies and testing would be required. Anyway, I just wished there had been a very conclusive name given instead of a guess. I just assumed in the medical field, cancer in particular that the technology and testing nowadays wouldn't leave any unanswered questions. Thanks Janner for your valued input. 🙂
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- September 6, 2012 at 2:22 am
I agree with Janner. I think your slides need to be looked at large institution. I’m on the other side of the country so can’t recommend.My sister had supposedly generic run of the mill breast cancer. Had chemo, negative SNB, lumpectomy with clean margins and was wrapping things up when she wound up in the ER with gallbladder like pain. They found an 8 cm tumor in her liver. It was biopsied here in las Vegas and they couldn’t come to a conclusion. She was sent to UCLA where another biopsy was done and original slides were also reviewed. Turns out she had generic breast cancer AND SMALL CELL CANCER. They think the small cell cancer came from the breast. It’s rare so they don’t normally look for it. It sucks- dramatically changed her prognosis. Significantly changed the treatment they offered her, so it’s important to know exactly what you have.
Best of luck to you,
Julie
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- September 6, 2012 at 2:22 am
I agree with Janner. I think your slides need to be looked at large institution. I’m on the other side of the country so can’t recommend.My sister had supposedly generic run of the mill breast cancer. Had chemo, negative SNB, lumpectomy with clean margins and was wrapping things up when she wound up in the ER with gallbladder like pain. They found an 8 cm tumor in her liver. It was biopsied here in las Vegas and they couldn’t come to a conclusion. She was sent to UCLA where another biopsy was done and original slides were also reviewed. Turns out she had generic breast cancer AND SMALL CELL CANCER. They think the small cell cancer came from the breast. It’s rare so they don’t normally look for it. It sucks- dramatically changed her prognosis. Significantly changed the treatment they offered her, so it’s important to know exactly what you have.
Best of luck to you,
Julie
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- September 6, 2012 at 2:22 am
I agree with Janner. I think your slides need to be looked at large institution. I’m on the other side of the country so can’t recommend.My sister had supposedly generic run of the mill breast cancer. Had chemo, negative SNB, lumpectomy with clean margins and was wrapping things up when she wound up in the ER with gallbladder like pain. They found an 8 cm tumor in her liver. It was biopsied here in las Vegas and they couldn’t come to a conclusion. She was sent to UCLA where another biopsy was done and original slides were also reviewed. Turns out she had generic breast cancer AND SMALL CELL CANCER. They think the small cell cancer came from the breast. It’s rare so they don’t normally look for it. It sucks- dramatically changed her prognosis. Significantly changed the treatment they offered her, so it’s important to know exactly what you have.
Best of luck to you,
Julie
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- September 6, 2012 at 11:38 am
Sometimes the type of cancer just can not be determined by studying the slides and educated guesses must be made, This happened to me last year. I was Stage 4 melanoma (lung met in 2000) going on 11 years NED when I was diagnosed with bone mets, sub qs, and probable lung mets. Biopsies from both a bone met and a sub q were obtained. They were looked at by multiple pathologists in multiple places, and all they could say was "poorly differentiated neoplasm." All the stains were inconclusive. Given my history, we proceeded on the assumption that this was a recurrence of melanoma.
A significant "tell" proved to be the genetic testing of the tumor for the BRAF mutation. This mutation occurs in approximately 50% of melanomas, but only in a small percentage of other cancers. In my case, the tumor was BRAF positive and I am currently in a BRAF/MEK clinical trial. I don't know if any of your tumor was saved so that it can be tested for the BRAF mutation (or if it is too late to do such testing), but you should at least mention this to your oncologist.
In any case, congrats on your NED status! I know of others who like me (and you) had lung mets removed years ago and are doing well.
Best wishes,
Harry
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- September 6, 2012 at 12:39 pm
Thanks Harry! I will mention this at my next appt. which is Sept. 28, about the BRAF. My oncologist said the staining done on the sample that covered like 98% of melanoma wasn't conclusive. It also wasn't conclusive for the primary lung cancer either. So, being sent to another facility and tested further, that team says they feel like it's melanoma, but aren't certain to any degree. I think this is an instance where maybe the prior history of melanoma may have been the weighing factor, although I'm not certain, but I do know that there isn't a diagnosis either way that is given without a doubt. Thanks for the info and encouraging words!
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- September 6, 2012 at 12:39 pm
Thanks Harry! I will mention this at my next appt. which is Sept. 28, about the BRAF. My oncologist said the staining done on the sample that covered like 98% of melanoma wasn't conclusive. It also wasn't conclusive for the primary lung cancer either. So, being sent to another facility and tested further, that team says they feel like it's melanoma, but aren't certain to any degree. I think this is an instance where maybe the prior history of melanoma may have been the weighing factor, although I'm not certain, but I do know that there isn't a diagnosis either way that is given without a doubt. Thanks for the info and encouraging words!
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- September 6, 2012 at 12:39 pm
Thanks Harry! I will mention this at my next appt. which is Sept. 28, about the BRAF. My oncologist said the staining done on the sample that covered like 98% of melanoma wasn't conclusive. It also wasn't conclusive for the primary lung cancer either. So, being sent to another facility and tested further, that team says they feel like it's melanoma, but aren't certain to any degree. I think this is an instance where maybe the prior history of melanoma may have been the weighing factor, although I'm not certain, but I do know that there isn't a diagnosis either way that is given without a doubt. Thanks for the info and encouraging words!
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- September 7, 2012 at 12:55 pm
Jamie, I had a lung Mel removed in November 09. Subsequent scans shows it had returned when I was I started on the IPI treatment. It was then diagnosed likely as scar tissue, and we were told to wait and watch. Apparently, it was indeed a Mel, because my scans last month were totally clean, which means the IPI is still working and did kill it off… -
- September 7, 2012 at 12:55 pm
Jamie, I had a lung Mel removed in November 09. Subsequent scans shows it had returned when I was I started on the IPI treatment. It was then diagnosed likely as scar tissue, and we were told to wait and watch. Apparently, it was indeed a Mel, because my scans last month were totally clean, which means the IPI is still working and did kill it off… -
- September 7, 2012 at 12:55 pm
Jamie, I had a lung Mel removed in November 09. Subsequent scans shows it had returned when I was I started on the IPI treatment. It was then diagnosed likely as scar tissue, and we were told to wait and watch. Apparently, it was indeed a Mel, because my scans last month were totally clean, which means the IPI is still working and did kill it off…
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- September 6, 2012 at 11:38 am
Sometimes the type of cancer just can not be determined by studying the slides and educated guesses must be made, This happened to me last year. I was Stage 4 melanoma (lung met in 2000) going on 11 years NED when I was diagnosed with bone mets, sub qs, and probable lung mets. Biopsies from both a bone met and a sub q were obtained. They were looked at by multiple pathologists in multiple places, and all they could say was "poorly differentiated neoplasm." All the stains were inconclusive. Given my history, we proceeded on the assumption that this was a recurrence of melanoma.
A significant "tell" proved to be the genetic testing of the tumor for the BRAF mutation. This mutation occurs in approximately 50% of melanomas, but only in a small percentage of other cancers. In my case, the tumor was BRAF positive and I am currently in a BRAF/MEK clinical trial. I don't know if any of your tumor was saved so that it can be tested for the BRAF mutation (or if it is too late to do such testing), but you should at least mention this to your oncologist.
In any case, congrats on your NED status! I know of others who like me (and you) had lung mets removed years ago and are doing well.
Best wishes,
Harry
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- September 6, 2012 at 11:38 am
Sometimes the type of cancer just can not be determined by studying the slides and educated guesses must be made, This happened to me last year. I was Stage 4 melanoma (lung met in 2000) going on 11 years NED when I was diagnosed with bone mets, sub qs, and probable lung mets. Biopsies from both a bone met and a sub q were obtained. They were looked at by multiple pathologists in multiple places, and all they could say was "poorly differentiated neoplasm." All the stains were inconclusive. Given my history, we proceeded on the assumption that this was a recurrence of melanoma.
A significant "tell" proved to be the genetic testing of the tumor for the BRAF mutation. This mutation occurs in approximately 50% of melanomas, but only in a small percentage of other cancers. In my case, the tumor was BRAF positive and I am currently in a BRAF/MEK clinical trial. I don't know if any of your tumor was saved so that it can be tested for the BRAF mutation (or if it is too late to do such testing), but you should at least mention this to your oncologist.
In any case, congrats on your NED status! I know of others who like me (and you) had lung mets removed years ago and are doing well.
Best wishes,
Harry
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