Anal Melanoma now in chest wall/lungs

Dear Anon:  Older folks are more likely to be of a generation that believes their doc knows what he's doing.  Some of them do, and good ones don't mind being questioned.  Somebody has to advocate for the patient if he won't/can't and it sounds like it will be you. Getting thru' this melanoma maze takes advocacy and coming up to speed about the disease and treatments availabe and clinical trials so you can ask intelligent questions with data to back it up. 

Re the PET, done every 6 mo and is the usual insurance coverage.  It's a lot of radiation and it's cumulative. What might have been considered in your Dad's case is treatment: chemo or immunotherapy, empirically, even tho' no cancer was seen on post op PET.  PET doesn't show any cancer <3mm. There is discussion about treating NED patients and it is being given in some melanoma treatment centers.

Re collapsing the lung for the biopsies, I don't have any experience with the preferred way to obtain the specimens which will depend on where in the lung tissue they're located, but it's worth questioning about the risks, alternative method and request a 2nd opinion if you're not sure you like what you hear.  If you're not at a major melanoma treatment center, can you transfer your Dad's care?

Keep asking questions here on the forum.  There is a wealth of experienced people posting and some have originally had rectal ca.  Hopefully some of them will pick up on your post.

Dear Anon:  Older folks are more likely to be of a generation that believes their doc knows what he's doing.  Some of them do, and good ones don't mind being questioned.  Somebody has to advocate for the patient if he won't/can't and it sounds like it will be you. Getting thru' this melanoma maze takes advocacy and coming up to speed about the disease and treatments availabe and clinical trials so you can ask intelligent questions with data to back it up. 

Re the PET, done every 6 mo and is the usual insurance coverage.  It's a lot of radiation and it's cumulative. What might have been considered in your Dad's case is treatment: chemo or immunotherapy, empirically, even tho' no cancer was seen on post op PET.  PET doesn't show any cancer <3mm. There is discussion about treating NED patients and it is being given in some melanoma treatment centers.

Re collapsing the lung for the biopsies, I don't have any experience with the preferred way to obtain the specimens which will depend on where in the lung tissue they're located, but it's worth questioning about the risks, alternative method and request a 2nd opinion if you're not sure you like what you hear.  If you're not at a major melanoma treatment center, can you transfer your Dad's care?

Keep asking questions here on the forum.  There is a wealth of experienced people posting and some have originally had rectal ca.  Hopefully some of them will pick up on your post.

Dear Anon:  Older folks are more likely to be of a generation that believes their doc knows what he's doing.  Some of them do, and good ones don't mind being questioned.  Somebody has to advocate for the patient if he won't/can't and it sounds like it will be you. Getting thru' this melanoma maze takes advocacy and coming up to speed about the disease and treatments availabe and clinical trials so you can ask intelligent questions with data to back it up. 

Re the PET, done every 6 mo and is the usual insurance coverage.  It's a lot of radiation and it's cumulative. What might have been considered in your Dad's case is treatment: chemo or immunotherapy, empirically, even tho' no cancer was seen on post op PET.  PET doesn't show any cancer <3mm. There is discussion about treating NED patients and it is being given in some melanoma treatment centers.

Re collapsing the lung for the biopsies, I don't have any experience with the preferred way to obtain the specimens which will depend on where in the lung tissue they're located, but it's worth questioning about the risks, alternative method and request a 2nd opinion if you're not sure you like what you hear.  If you're not at a major melanoma treatment center, can you transfer your Dad's care?

Keep asking questions here on the forum.  There is a wealth of experienced people posting and some have originally had rectal ca.  Hopefully some of them will pick up on your post.

One of my friends had anal melanoma as well. The surgery didn't get it all for him. If I understood it right. They then did radiation. The PET scan then showed NED everywhere. The CT of that spot also showed it was gone. They then did some type of chemo pills. I think his follow up will be 3 months though. Not sure if that is for another CT or PET. Another patient has 3 month follow ups where they do a CT then the next time is the PET and so forth so basically a PET every 6 months and CT every 6 months.

In my opinion he needs to get to a melanoma specialist. Preferably at one of the major centers. Collapsing a lung seems rather drastic and risky just to get a biopsy but that is just my opinion I have just never heard of such a thing. As you know with melanoma it can spread quick so in my opinion he needs to get to a major center with a melanoma specialist as soon as possible. Like first thing after the holidays if not sooner.

Artie

One of my friends had anal melanoma as well. The surgery didn't get it all for him. If I understood it right. They then did radiation. The PET scan then showed NED everywhere. The CT of that spot also showed it was gone. They then did some type of chemo pills. I think his follow up will be 3 months though. Not sure if that is for another CT or PET. Another patient has 3 month follow ups where they do a CT then the next time is the PET and so forth so basically a PET every 6 months and CT every 6 months.

In my opinion he needs to get to a melanoma specialist. Preferably at one of the major centers. Collapsing a lung seems rather drastic and risky just to get a biopsy but that is just my opinion I have just never heard of such a thing. As you know with melanoma it can spread quick so in my opinion he needs to get to a major center with a melanoma specialist as soon as possible. Like first thing after the holidays if not sooner.

Artie

One of my friends had anal melanoma as well. The surgery didn't get it all for him. If I understood it right. They then did radiation. The PET scan then showed NED everywhere. The CT of that spot also showed it was gone. They then did some type of chemo pills. I think his follow up will be 3 months though. Not sure if that is for another CT or PET. Another patient has 3 month follow ups where they do a CT then the next time is the PET and so forth so basically a PET every 6 months and CT every 6 months.

In my opinion he needs to get to a melanoma specialist. Preferably at one of the major centers. Collapsing a lung seems rather drastic and risky just to get a biopsy but that is just my opinion I have just never heard of such a thing. As you know with melanoma it can spread quick so in my opinion he needs to get to a major center with a melanoma specialist as soon as possible. Like first thing after the holidays if not sooner.

Artie

Hi,

my Mom was diagnosed with anal melanoma in October last year. She had a local excision first and histopathology results showed it was melanoma (doctors had not known what they were cutting out). She had PET scan and CT scan then – both clean. But melanoma is tricky. One oncologist told us that its cells don't divide that quickly, which means that they don't consume that much sugar, which makes it more difficult for PET to detect them. Our doctor ordered then getting TRUS and then sentinel nod biposy and another surgery to get wider margins (PET is not good at early showing metas to lymp nodes, that is why sentinel node biopsy in skin cancer is a standard). He said it's a better alternative to radiation. But sentinel nod biopsy is controversial in this type of melanoma. It is easy to get a groin node, but it might be as well a node in mesorectum or an illiac one. So another doctor was strongly against both sentinel node biopsy and getting wider margins. I'm in touch with a person whose Mom suffered from this cancer and doctors had the same discussion then. She was consulted in Boston in Dana Faber and they did not recommend it. Anyway, the discussion ended up when pelvis MRI showed metastatic iliac node and a suspicion of recurrence in January. PET scan in February confirmed it. So my mom had rectum amputation and extended lymphadenoctomy in March this year. Histopathology confirmed three invaded nodes and recurrence.Doctors decided no adjuvant therapy is needed (I got second opinion from Gustave Roussy in Paris then also recommending scans every three months and no chemo, radiotherapy or interferon).  In June there was another CT scan, clean, only 3 mm something in left lung, which was said to be inconclusive.  Two X-rays of chest and and abdomen USG showed nothing in next four months. And then a surprise came in the end of October – CT scan showed several small metas in lungs and abdomen. My Mom got two doses of chemo (dacarbazine) and tomorrow we have an appointment with a doctor to proceed with yervoy, as CT showed tumors grew. If Yervoy does not work, then Keytruda. I have a colleague who works for Merck and he says Keytruda is a real breakthrough- it has 3 times better response rate and 3 times less side effects. I also consulted Paris (they recommend Yervoy) and Harvard doctors through online consultation (they say LDH level is crucial – if it is within limits Yervoy Keytruda scheme is ok, but if LDH level is high Keytruda should be introduced as soon as possible). My mom got chemo first mainly because insurer requires it (where I live you have public health insurance).

Nobody mentioned getting biopsy from the lung. I don't know if scans results were so obvious or they just used simple logic. In case of my pen friend's mom they also didn't do biopsy. But I read on another forum a case that a tumor in lung turned out after a surgery to be a different type of cancer. On the other hand that man had only one tumor and only in a his lung, so they were able to operate it.

To sum up: even if you check very often this disease can spread extremaly quickly. And scanning is not neutral, it has side effects. All sorces I went through say that wait and watch approach is most recommended, there is no accepted adjuvant treatment. Or maybe radical operation should have been done when only we knew it was melanoma. But there are some articles saying that this invasive surgery doesn't improve survival rate. So maybe we shouldn't have agreed to it at all. Look for second opinion. That is how I learnt about importance of LDH level. If you ask and discuss you at least know what are your options.

All the best to your Dad and you!

Hi,

my Mom was diagnosed with anal melanoma in October last year. She had a local excision first and histopathology results showed it was melanoma (doctors had not known what they were cutting out). She had PET scan and CT scan then – both clean. But melanoma is tricky. One oncologist told us that its cells don't divide that quickly, which means that they don't consume that much sugar, which makes it more difficult for PET to detect them. Our doctor ordered then getting TRUS and then sentinel nod biposy and another surgery to get wider margins (PET is not good at early showing metas to lymp nodes, that is why sentinel node biopsy in skin cancer is a standard). He said it's a better alternative to radiation. But sentinel nod biopsy is controversial in this type of melanoma. It is easy to get a groin node, but it might be as well a node in mesorectum or an illiac one. So another doctor was strongly against both sentinel node biopsy and getting wider margins. I'm in touch with a person whose Mom suffered from this cancer and doctors had the same discussion then. She was consulted in Boston in Dana Faber and they did not recommend it. Anyway, the discussion ended up when pelvis MRI showed metastatic iliac node and a suspicion of recurrence in January. PET scan in February confirmed it. So my mom had rectum amputation and extended lymphadenoctomy in March this year. Histopathology confirmed three invaded nodes and recurrence.Doctors decided no adjuvant therapy is needed (I got second opinion from Gustave Roussy in Paris then also recommending scans every three months and no chemo, radiotherapy or interferon).  In June there was another CT scan, clean, only 3 mm something in left lung, which was said to be inconclusive.  Two X-rays of chest and and abdomen USG showed nothing in next four months. And then a surprise came in the end of October – CT scan showed several small metas in lungs and abdomen. My Mom got two doses of chemo (dacarbazine) and tomorrow we have an appointment with a doctor to proceed with yervoy, as CT showed tumors grew. If Yervoy does not work, then Keytruda. I have a colleague who works for Merck and he says Keytruda is a real breakthrough- it has 3 times better response rate and 3 times less side effects. I also consulted Paris (they recommend Yervoy) and Harvard doctors through online consultation (they say LDH level is crucial – if it is within limits Yervoy Keytruda scheme is ok, but if LDH level is high Keytruda should be introduced as soon as possible). My mom got chemo first mainly because insurer requires it (where I live you have public health insurance).

Nobody mentioned getting biopsy from the lung. I don't know if scans results were so obvious or they just used simple logic. In case of my pen friend's mom they also didn't do biopsy. But I read on another forum a case that a tumor in lung turned out after a surgery to be a different type of cancer. On the other hand that man had only one tumor and only in a his lung, so they were able to operate it.

To sum up: even if you check very often this disease can spread extremaly quickly. And scanning is not neutral, it has side effects. All sorces I went through say that wait and watch approach is most recommended, there is no accepted adjuvant treatment. Or maybe radical operation should have been done when only we knew it was melanoma. But there are some articles saying that this invasive surgery doesn't improve survival rate. So maybe we shouldn't have agreed to it at all. Look for second opinion. That is how I learnt about importance of LDH level. If you ask and discuss you at least know what are your options.

All the best to your Dad and you!

Hi,

my Mom was diagnosed with anal melanoma in October last year. She had a local excision first and histopathology results showed it was melanoma (doctors had not known what they were cutting out). She had PET scan and CT scan then – both clean. But melanoma is tricky. One oncologist told us that its cells don't divide that quickly, which means that they don't consume that much sugar, which makes it more difficult for PET to detect them. Our doctor ordered then getting TRUS and then sentinel nod biposy and another surgery to get wider margins (PET is not good at early showing metas to lymp nodes, that is why sentinel node biopsy in skin cancer is a standard). He said it's a better alternative to radiation. But sentinel nod biopsy is controversial in this type of melanoma. It is easy to get a groin node, but it might be as well a node in mesorectum or an illiac one. So another doctor was strongly against both sentinel node biopsy and getting wider margins. I'm in touch with a person whose Mom suffered from this cancer and doctors had the same discussion then. She was consulted in Boston in Dana Faber and they did not recommend it. Anyway, the discussion ended up when pelvis MRI showed metastatic iliac node and a suspicion of recurrence in January. PET scan in February confirmed it. So my mom had rectum amputation and extended lymphadenoctomy in March this year. Histopathology confirmed three invaded nodes and recurrence.Doctors decided no adjuvant therapy is needed (I got second opinion from Gustave Roussy in Paris then also recommending scans every three months and no chemo, radiotherapy or interferon).  In June there was another CT scan, clean, only 3 mm something in left lung, which was said to be inconclusive.  Two X-rays of chest and and abdomen USG showed nothing in next four months. And then a surprise came in the end of October – CT scan showed several small metas in lungs and abdomen. My Mom got two doses of chemo (dacarbazine) and tomorrow we have an appointment with a doctor to proceed with yervoy, as CT showed tumors grew. If Yervoy does not work, then Keytruda. I have a colleague who works for Merck and he says Keytruda is a real breakthrough- it has 3 times better response rate and 3 times less side effects. I also consulted Paris (they recommend Yervoy) and Harvard doctors through online consultation (they say LDH level is crucial – if it is within limits Yervoy Keytruda scheme is ok, but if LDH level is high Keytruda should be introduced as soon as possible). My mom got chemo first mainly because insurer requires it (where I live you have public health insurance).

Nobody mentioned getting biopsy from the lung. I don't know if scans results were so obvious or they just used simple logic. In case of my pen friend's mom they also didn't do biopsy. But I read on another forum a case that a tumor in lung turned out after a surgery to be a different type of cancer. On the other hand that man had only one tumor and only in a his lung, so they were able to operate it.

To sum up: even if you check very often this disease can spread extremaly quickly. And scanning is not neutral, it has side effects. All sorces I went through say that wait and watch approach is most recommended, there is no accepted adjuvant treatment. Or maybe radical operation should have been done when only we knew it was melanoma. But there are some articles saying that this invasive surgery doesn't improve survival rate. So maybe we shouldn't have agreed to it at all. Look for second opinion. That is how I learnt about importance of LDH level. If you ask and discuss you at least know what are your options.

All the best to your Dad and you!