› Forums › General Melanoma Community › Its back after 15 months NED
- This topic has 48 replies, 6 voices, and was last updated 11 years, 9 months ago by
Wally.
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- July 25, 2012 at 7:08 am
I have had a follow-up scan (the first since my RML Lobectomy in April 2011) and it highlights a possible malignant tumour in lower part my right lung. It also highlighted a suspiscious growth on the side of my face, just ahead of my ear on the jawbone. Had needle biopsy yesterday to establish status. Lung tumour will be surgically removed IDC.I have had a follow-up scan (the first since my RML Lobectomy in April 2011) and it highlights a possible malignant tumour in lower part my right lung. It also highlighted a suspiscious growth on the side of my face, just ahead of my ear on the jawbone. Had needle biopsy yesterday to establish status. Lung tumour will be surgically removed IDC. If the face thing proves to be possitive they intend applying a drug called Ipilimumab and/or Interferan (not Chemo or radiation as apparently that is not effective against Melenoma). Should get results of Biopsy by Thursday or Friday. It appears this is the cause of the pain in my chest – hard to believe because my understanding is that Melanoma is painless.Is this the right treatment?Thank you all for your valuable input, much appreciated.Kindest regards to all the worriorsWally
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- July 25, 2012 at 10:03 am
Sorry to hear. Did I read your profile correctly that you were initially in situ? I thought in situ does not/cannot spread, is 100% curable? Was your initial pathology for sure correct?
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- July 25, 2012 at 12:47 pm
Yes, you read correctly. That is exactly what my Histological Report and the surgeon's report states. I was told that even my Lymphnodes were clear and that I need only have follow-ups every 6 months. When I went for my final check-up 5 years later, a blood count indicated all was normal and I was told there was no need for further follow-ups. I was coughing quite badly at the time and thinking it was a chest infection, my GP ordered an X-ray of my chest that indicated the tumor. I went to my Oncologist and told her that this clear diagnosis was not so clear. She ordered a Pet Scan that confirmed the tumor. I had the Lobectomy and again told all margins were clear, that we got it in time and that after the op my worries would be over. The report after the op confirmed that I had stage 4 Mets Melanoma, the primary being the mole on my ear. I have had quarterly check-ups every 3 months since the op in April last year. Each time blood was drawn that indicated low counts not justifying further action. On my last visit I suggested to the Oncologist that perhaps a Pet Scan should be taken to confirm that everthing was clear as I felt uncomfortable with not having had any detailed check-ups. The pet scan was ordered and the rest of my tale of woe you know.
So yes, believe me, in-situ for Melanoma is no guarantee that it will not return. But bear in mind we all have different make-ups and what happened to me does not mean it will apply to you or anybody else for that matter. Reading this forum should be regared as a guide and not taken as gospel as we all react diferently to different drugs / procedures. I must say that I was totally gobsmacked when I got this latest news.
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- July 25, 2012 at 1:31 pm
I don't know what to believe anymore. I've always heard in situ is 100% curable and is incapable of metastasis. That is it happens, it must be a mistake in pathology and initially was not really in situ or had extensive regression. Otherwise, pure in situ cannot spread if removed at that stage.
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- July 25, 2012 at 2:56 pm
Sometimes (rarely) mistakes are made in the collection of the specimen or by the pathologist. You are much much more likely to hear about such things on this board, where the these rare and unfortunate cases tend to be discussed. We must keep our perspective – in the general population of people diagnosed with in situ, the rate of recurrence is essentially zero.
Best wishes,
Harry
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- July 25, 2012 at 2:56 pm
Sometimes (rarely) mistakes are made in the collection of the specimen or by the pathologist. You are much much more likely to hear about such things on this board, where the these rare and unfortunate cases tend to be discussed. We must keep our perspective – in the general population of people diagnosed with in situ, the rate of recurrence is essentially zero.
Best wishes,
Harry
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- July 25, 2012 at 2:56 pm
Sometimes (rarely) mistakes are made in the collection of the specimen or by the pathologist. You are much much more likely to hear about such things on this board, where the these rare and unfortunate cases tend to be discussed. We must keep our perspective – in the general population of people diagnosed with in situ, the rate of recurrence is essentially zero.
Best wishes,
Harry
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- July 25, 2012 at 3:24 pm
There are no reliable blood work indications for melanoma mets. There are some things that can be monitored for change – LDH enzyme might show liver damage – but even that isn't any guarantee. I know of someone who had 70% of her liver involved and still had normal LDH levels. Maybe in the future, blood work will be able to show more. But for now, it really isn't much of an indication of anything conclusive.
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- July 25, 2012 at 3:24 pm
There are no reliable blood work indications for melanoma mets. There are some things that can be monitored for change – LDH enzyme might show liver damage – but even that isn't any guarantee. I know of someone who had 70% of her liver involved and still had normal LDH levels. Maybe in the future, blood work will be able to show more. But for now, it really isn't much of an indication of anything conclusive.
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- July 25, 2012 at 3:24 pm
There are no reliable blood work indications for melanoma mets. There are some things that can be monitored for change – LDH enzyme might show liver damage – but even that isn't any guarantee. I know of someone who had 70% of her liver involved and still had normal LDH levels. Maybe in the future, blood work will be able to show more. But for now, it really isn't much of an indication of anything conclusive.
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- July 25, 2012 at 3:25 pm
No. Blood work is essentially useless for the detection of melanoma recurrence. It would only show something wrong when organs (such as liver) are thoroughly compromised – and by then the patient would be symptomatic.
Best wishes,
Harry
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- July 25, 2012 at 3:25 pm
No. Blood work is essentially useless for the detection of melanoma recurrence. It would only show something wrong when organs (such as liver) are thoroughly compromised – and by then the patient would be symptomatic.
Best wishes,
Harry
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- July 25, 2012 at 3:25 pm
No. Blood work is essentially useless for the detection of melanoma recurrence. It would only show something wrong when organs (such as liver) are thoroughly compromised – and by then the patient would be symptomatic.
Best wishes,
Harry
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- July 25, 2012 at 1:31 pm
I don't know what to believe anymore. I've always heard in situ is 100% curable and is incapable of metastasis. That is it happens, it must be a mistake in pathology and initially was not really in situ or had extensive regression. Otherwise, pure in situ cannot spread if removed at that stage.
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- July 25, 2012 at 1:31 pm
I don't know what to believe anymore. I've always heard in situ is 100% curable and is incapable of metastasis. That is it happens, it must be a mistake in pathology and initially was not really in situ or had extensive regression. Otherwise, pure in situ cannot spread if removed at that stage.
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- July 25, 2012 at 3:23 pm
I am a little unclear on a few things. You mentiion insitu, but your profile states depth is up to 1mm. Also, you mention your nodes are clear? Did you also have a SNB-sentinel node biopsy?
If your melanoma primary had a depth, it was not insitu. Insitu means in place, and it has no depth.
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- July 25, 2012 at 3:23 pm
I am a little unclear on a few things. You mentiion insitu, but your profile states depth is up to 1mm. Also, you mention your nodes are clear? Did you also have a SNB-sentinel node biopsy?
If your melanoma primary had a depth, it was not insitu. Insitu means in place, and it has no depth.
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- July 25, 2012 at 3:23 pm
I am a little unclear on a few things. You mentiion insitu, but your profile states depth is up to 1mm. Also, you mention your nodes are clear? Did you also have a SNB-sentinel node biopsy?
If your melanoma primary had a depth, it was not insitu. Insitu means in place, and it has no depth.
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- July 25, 2012 at 3:36 pm
I believe the "depth is up to 1 mm" entry is because of the input procedure in the profile creation page. It only lets you pick a range, and that is the first and most appropriate one for a very shallow lesion.
The issue of node involvement is really not relevant in this case. By the way, melanoma does spread even with negative SNB results. It can go to directly to the blood stream, bypassing the lymph system.
Best wishes,
Harry
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- July 25, 2012 at 3:36 pm
I believe the "depth is up to 1 mm" entry is because of the input procedure in the profile creation page. It only lets you pick a range, and that is the first and most appropriate one for a very shallow lesion.
The issue of node involvement is really not relevant in this case. By the way, melanoma does spread even with negative SNB results. It can go to directly to the blood stream, bypassing the lymph system.
Best wishes,
Harry
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- July 25, 2012 at 3:36 pm
I believe the "depth is up to 1 mm" entry is because of the input procedure in the profile creation page. It only lets you pick a range, and that is the first and most appropriate one for a very shallow lesion.
The issue of node involvement is really not relevant in this case. By the way, melanoma does spread even with negative SNB results. It can go to directly to the blood stream, bypassing the lymph system.
Best wishes,
Harry
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- July 25, 2012 at 12:47 pm
Yes, you read correctly. That is exactly what my Histological Report and the surgeon's report states. I was told that even my Lymphnodes were clear and that I need only have follow-ups every 6 months. When I went for my final check-up 5 years later, a blood count indicated all was normal and I was told there was no need for further follow-ups. I was coughing quite badly at the time and thinking it was a chest infection, my GP ordered an X-ray of my chest that indicated the tumor. I went to my Oncologist and told her that this clear diagnosis was not so clear. She ordered a Pet Scan that confirmed the tumor. I had the Lobectomy and again told all margins were clear, that we got it in time and that after the op my worries would be over. The report after the op confirmed that I had stage 4 Mets Melanoma, the primary being the mole on my ear. I have had quarterly check-ups every 3 months since the op in April last year. Each time blood was drawn that indicated low counts not justifying further action. On my last visit I suggested to the Oncologist that perhaps a Pet Scan should be taken to confirm that everthing was clear as I felt uncomfortable with not having had any detailed check-ups. The pet scan was ordered and the rest of my tale of woe you know.
So yes, believe me, in-situ for Melanoma is no guarantee that it will not return. But bear in mind we all have different make-ups and what happened to me does not mean it will apply to you or anybody else for that matter. Reading this forum should be regared as a guide and not taken as gospel as we all react diferently to different drugs / procedures. I must say that I was totally gobsmacked when I got this latest news.
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- July 25, 2012 at 12:47 pm
Yes, you read correctly. That is exactly what my Histological Report and the surgeon's report states. I was told that even my Lymphnodes were clear and that I need only have follow-ups every 6 months. When I went for my final check-up 5 years later, a blood count indicated all was normal and I was told there was no need for further follow-ups. I was coughing quite badly at the time and thinking it was a chest infection, my GP ordered an X-ray of my chest that indicated the tumor. I went to my Oncologist and told her that this clear diagnosis was not so clear. She ordered a Pet Scan that confirmed the tumor. I had the Lobectomy and again told all margins were clear, that we got it in time and that after the op my worries would be over. The report after the op confirmed that I had stage 4 Mets Melanoma, the primary being the mole on my ear. I have had quarterly check-ups every 3 months since the op in April last year. Each time blood was drawn that indicated low counts not justifying further action. On my last visit I suggested to the Oncologist that perhaps a Pet Scan should be taken to confirm that everthing was clear as I felt uncomfortable with not having had any detailed check-ups. The pet scan was ordered and the rest of my tale of woe you know.
So yes, believe me, in-situ for Melanoma is no guarantee that it will not return. But bear in mind we all have different make-ups and what happened to me does not mean it will apply to you or anybody else for that matter. Reading this forum should be regared as a guide and not taken as gospel as we all react diferently to different drugs / procedures. I must say that I was totally gobsmacked when I got this latest news.
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- July 25, 2012 at 3:18 pm
Melanoma is unpredictable in how and where it presents in a recurrence. Sometime there are symptoms, sometimes not.
The first drug you mention is also known by its commercial name of Yervoy (at least in the USA). It is certainly a great first choice. In the USA, interferon is usually not given to Stage IV patients.
Another drug of great promise is Zelboraf – but for this your tumor must have the right genetic mutation. You should discuss with your oncologist having your tumor tested for this mutation (I am assuming that Zelboraf is available where you are).
Make sure that you are being seen by an oncologist who is up to date on all the new developments in melanoma treatment. If there is a center in your country that specializes in melanoma, you should certainly be seen there for a second opinion.
Keep your spirits up. There are many long-term survivors of advanced melanoma here. I was first diagnosed with Stage IV disease (also in lung) over 12 years ago!
Best wishes,
Harry
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- July 25, 2012 at 3:18 pm
Melanoma is unpredictable in how and where it presents in a recurrence. Sometime there are symptoms, sometimes not.
The first drug you mention is also known by its commercial name of Yervoy (at least in the USA). It is certainly a great first choice. In the USA, interferon is usually not given to Stage IV patients.
Another drug of great promise is Zelboraf – but for this your tumor must have the right genetic mutation. You should discuss with your oncologist having your tumor tested for this mutation (I am assuming that Zelboraf is available where you are).
Make sure that you are being seen by an oncologist who is up to date on all the new developments in melanoma treatment. If there is a center in your country that specializes in melanoma, you should certainly be seen there for a second opinion.
Keep your spirits up. There are many long-term survivors of advanced melanoma here. I was first diagnosed with Stage IV disease (also in lung) over 12 years ago!
Best wishes,
Harry
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- July 25, 2012 at 3:18 pm
Melanoma is unpredictable in how and where it presents in a recurrence. Sometime there are symptoms, sometimes not.
The first drug you mention is also known by its commercial name of Yervoy (at least in the USA). It is certainly a great first choice. In the USA, interferon is usually not given to Stage IV patients.
Another drug of great promise is Zelboraf – but for this your tumor must have the right genetic mutation. You should discuss with your oncologist having your tumor tested for this mutation (I am assuming that Zelboraf is available where you are).
Make sure that you are being seen by an oncologist who is up to date on all the new developments in melanoma treatment. If there is a center in your country that specializes in melanoma, you should certainly be seen there for a second opinion.
Keep your spirits up. There are many long-term survivors of advanced melanoma here. I was first diagnosed with Stage IV disease (also in lung) over 12 years ago!
Best wishes,
Harry
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- July 25, 2012 at 5:20 pm
I am so sorry you are having to go through this, but, like others have said – there are many long-term stories on this board. Melanoma is such an unpredictable disease. I have been sage 4 for 7 years, so I add my voice to the others!
I completely agree with the advice from Harry posted above on all counts. Be sure you get in to someone who is current in all that is available, for these days there is new information on a frequent basis.
Kind regards and prayers
Tina D
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- July 25, 2012 at 5:20 pm
I am so sorry you are having to go through this, but, like others have said – there are many long-term stories on this board. Melanoma is such an unpredictable disease. I have been sage 4 for 7 years, so I add my voice to the others!
I completely agree with the advice from Harry posted above on all counts. Be sure you get in to someone who is current in all that is available, for these days there is new information on a frequent basis.
Kind regards and prayers
Tina D
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- July 25, 2012 at 5:20 pm
I am so sorry you are having to go through this, but, like others have said – there are many long-term stories on this board. Melanoma is such an unpredictable disease. I have been sage 4 for 7 years, so I add my voice to the others!
I completely agree with the advice from Harry posted above on all counts. Be sure you get in to someone who is current in all that is available, for these days there is new information on a frequent basis.
Kind regards and prayers
Tina D
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- July 25, 2012 at 7:28 pm
Pretty6 frustrating. I typed out the whol;e Final Histology Report and somehow mit got lost or wiped out.
Herewith just a short extract f salient parts
Macroscopy
Ellipse of skin measuring 20 x 10 x 25mm in diameter with a pigmented lesion on the surface measuring 7 mm in diameter.Microscopy:
Sections of this tissue confirm the clinical diagnosis oof a lentigo maligna (malignant melanoma in-situ)
No infiltration of the dermis is present (Breslow 0 Clarke level 1)
I hiope this clarifies some of the issues raised.
I would like to thank you all for your input. We do not have a great selection of oncologists here in SA. You go to the guy that is closest to you and hope for the best.
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- July 25, 2012 at 7:28 pm
Pretty6 frustrating. I typed out the whol;e Final Histology Report and somehow mit got lost or wiped out.
Herewith just a short extract f salient parts
Macroscopy
Ellipse of skin measuring 20 x 10 x 25mm in diameter with a pigmented lesion on the surface measuring 7 mm in diameter.Microscopy:
Sections of this tissue confirm the clinical diagnosis oof a lentigo maligna (malignant melanoma in-situ)
No infiltration of the dermis is present (Breslow 0 Clarke level 1)
I hiope this clarifies some of the issues raised.
I would like to thank you all for your input. We do not have a great selection of oncologists here in SA. You go to the guy that is closest to you and hope for the best.
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- July 25, 2012 at 7:28 pm
Pretty6 frustrating. I typed out the whol;e Final Histology Report and somehow mit got lost or wiped out.
Herewith just a short extract f salient parts
Macroscopy
Ellipse of skin measuring 20 x 10 x 25mm in diameter with a pigmented lesion on the surface measuring 7 mm in diameter.Microscopy:
Sections of this tissue confirm the clinical diagnosis oof a lentigo maligna (malignant melanoma in-situ)
No infiltration of the dermis is present (Breslow 0 Clarke level 1)
I hiope this clarifies some of the issues raised.
I would like to thank you all for your input. We do not have a great selection of oncologists here in SA. You go to the guy that is closest to you and hope for the best.
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- July 26, 2012 at 7:11 am
I have not heard of that but I have since established through various articles that most Melanoma's (that includes in-situ cancers) do enter your blood stream and can re-manifest itself anywhere else in your body – primarily in the lungs, ribs and liver. In my case the lungs. So the assertion that it can travel down hair follicles seems possible. I will try to remember to ask my Oncologist when I see her to discuss the outcome of my biopsy and the process going forward for my op on the lung to remove the newest tumor.
I have enjoyed reading your perspective and also that of the other contributors. I have made quite a few posts over the past year or so but this was the first constructive interaction I have had.
Thank you all and may you all be blessed with speedy recovery or at least remission.
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- July 26, 2012 at 10:51 am
I am not sure that is accurate that most melanomas enter the bloodstream. First, I believe melanoma mostly disseminates via the lymphatic system, but can bypass that via the bloodstream if it was thick enough/deep enough in the primary lesion to reach the blood vessels. If most melanomas, even in situ, entered the bloodstream as you say, the survival rates for early thin melanomas would not be as high as they are reported.
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- July 26, 2012 at 10:51 am
I am not sure that is accurate that most melanomas enter the bloodstream. First, I believe melanoma mostly disseminates via the lymphatic system, but can bypass that via the bloodstream if it was thick enough/deep enough in the primary lesion to reach the blood vessels. If most melanomas, even in situ, entered the bloodstream as you say, the survival rates for early thin melanomas would not be as high as they are reported.
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- July 26, 2012 at 10:51 am
I am not sure that is accurate that most melanomas enter the bloodstream. First, I believe melanoma mostly disseminates via the lymphatic system, but can bypass that via the bloodstream if it was thick enough/deep enough in the primary lesion to reach the blood vessels. If most melanomas, even in situ, entered the bloodstream as you say, the survival rates for early thin melanomas would not be as high as they are reported.
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- July 26, 2012 at 7:11 am
I have not heard of that but I have since established through various articles that most Melanoma's (that includes in-situ cancers) do enter your blood stream and can re-manifest itself anywhere else in your body – primarily in the lungs, ribs and liver. In my case the lungs. So the assertion that it can travel down hair follicles seems possible. I will try to remember to ask my Oncologist when I see her to discuss the outcome of my biopsy and the process going forward for my op on the lung to remove the newest tumor.
I have enjoyed reading your perspective and also that of the other contributors. I have made quite a few posts over the past year or so but this was the first constructive interaction I have had.
Thank you all and may you all be blessed with speedy recovery or at least remission.
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- July 26, 2012 at 7:11 am
I have not heard of that but I have since established through various articles that most Melanoma's (that includes in-situ cancers) do enter your blood stream and can re-manifest itself anywhere else in your body – primarily in the lungs, ribs and liver. In my case the lungs. So the assertion that it can travel down hair follicles seems possible. I will try to remember to ask my Oncologist when I see her to discuss the outcome of my biopsy and the process going forward for my op on the lung to remove the newest tumor.
I have enjoyed reading your perspective and also that of the other contributors. I have made quite a few posts over the past year or so but this was the first constructive interaction I have had.
Thank you all and may you all be blessed with speedy recovery or at least remission.
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