aleksandra

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!

Hi Cathy,

my Mom get the same diagnosis in October last year. The tumor was quite big (16 mm diameter). She had local excision before doctors actually knew it was melanoma. The surgeon operating Mom said it is easy to hurt sphincter and anyone can do that. He declared to do his best to save it and he succeded. So the question in your case is if it needs a talented surgeon to do it safely, or part of the muscle just has to be removed as melanoma has infiltrated it. Ask about radiotherapy. I read that in typical rectal cancer it is first done to save sphincter. One oncologist told me, that this type of melanoma is quite sensitive to radio.

We are now struggling with futher steps, as doctors we consult have different views. So far my Mom is NED, but they suspect meta to lymphatic nods, so she needs futher diagnosing.

Please let me know, how you are doing, and what doctors recommend apart from surgery.

Take care and don't give up!

Aleksandra

Hi Cathy,

my Mom get the same diagnosis in October last year. The tumor was quite big (16 mm diameter). She had local excision before doctors actually knew it was melanoma. The surgeon operating Mom said it is easy to hurt sphincter and anyone can do that. He declared to do his best to save it and he succeded. So the question in your case is if it needs a talented surgeon to do it safely, or part of the muscle just has to be removed as melanoma has infiltrated it. Ask about radiotherapy. I read that in typical rectal cancer it is first done to save sphincter. One oncologist told me, that this type of melanoma is quite sensitive to radio.

We are now struggling with futher steps, as doctors we consult have different views. So far my Mom is NED, but they suspect meta to lymphatic nods, so she needs futher diagnosing.

Please let me know, how you are doing, and what doctors recommend apart from surgery.

Take care and don't give up!

Aleksandra

Hi Cathy,

my Mom get the same diagnosis in October last year. The tumor was quite big (16 mm diameter). She had local excision before doctors actually knew it was melanoma. The surgeon operating Mom said it is easy to hurt sphincter and anyone can do that. He declared to do his best to save it and he succeded. So the question in your case is if it needs a talented surgeon to do it safely, or part of the muscle just has to be removed as melanoma has infiltrated it. Ask about radiotherapy. I read that in typical rectal cancer it is first done to save sphincter. One oncologist told me, that this type of melanoma is quite sensitive to radio.

We are now struggling with futher steps, as doctors we consult have different views. So far my Mom is NED, but they suspect meta to lymphatic nods, so she needs futher diagnosing.

Please let me know, how you are doing, and what doctors recommend apart from surgery.

Take care and don't give up!

Aleksandra

Hi again,

I'm a differetn anonymous, than the one in the post you replied to. But my experience with mucous melanoma and sentinel node biopsy was similar as of the anonymous you repled to to, so I decided to share my thoughts.

Again best,

Aleksandra

Hi again,

I'm a differetn anonymous, than the one in the post you replied to. But my experience with mucous melanoma and sentinel node biopsy was similar as of the anonymous you repled to to, so I decided to share my thoughts.

Again best,

Aleksandra

Hi again,

I'm a differetn anonymous, than the one in the post you replied to. But my experience with mucous melanoma and sentinel node biopsy was similar as of the anonymous you repled to to, so I decided to share my thoughts.

Again best,

Aleksandra

Hi Jerry,

what I wrote is based on consultations with different doctors (altogether 5):

1. advised us to have it

2. told us, that the first one practices "academic medicine" and this method is not very trustworthy. Lympha might go to groin nodes (these can be checked), but as well to mesorectum and pelvic ones and there is problem to detect and with some of them to take them out.

3. was of similar opinion as the second one. He summed up, that sentinel node biopsy can be done, but not doing it is not a mistake. His opinion was that radical operation with colostomy and lymhadenoctomy would increase chances much more.

4. advised my penfriend's mother to have sentinel node biopsy and it showed metas in groin nodes. But melanoma was also in pelvic  ones which were not showed by sentinel node biopsy.

5. In Dana Faber in Boston doctors told my penfriend's mother not to it (she finally did it as I wrote above).

A year ago, as my mother was diagnosed, I did some research in the Internet and I found some articles in medical journals about sentinel node biopsy in anal mucous melanoma. They discuss if sentinel node biopsy is useful and they don't come to clear conclusions. These are just few.

http://www.jcancer.org/v03p0449.htm

http://nuclmed.web.auth.gr/magazine/eng/jan08/39.pdf

http://www.google.pl/url?sa=t&rct=j&q=&esrc=s&source=web&cd=2&ved=0CCkQFjAB&url=http%3A%2F%2Fwww.researchgate.net%2Fpublication%2F51031074_Anorectal_melanoma_diagnosis_and_treatment%2Flinks%2F0912f510c18413308e000000.pdf&ei=W-quVOTKN5H5asvbgNAJ&usg=AFQjCNF2hsBHT0NWfEUQAbap3ZGJl_qDcw&sig2=a3fWhLAICAIZLOfjdZZCpw&bvm=bv.83134100,d.d2s

I hope you're doing well. My Mom is after dacarbazine (didn't help) and now after the first dosage of ipi.

Best,

Aleksandra

PS I hope now you have access to my email, I'm more than happy to keep in touch

Hi Jerry,

what I wrote is based on consultations with different doctors (altogether 5):

1. advised us to have it

2. told us, that the first one practices "academic medicine" and this method is not very trustworthy. Lympha might go to groin nodes (these can be checked), but as well to mesorectum and pelvic ones and there is problem to detect and with some of them to take them out.

3. was of similar opinion as the second one. He summed up, that sentinel node biopsy can be done, but not doing it is not a mistake. His opinion was that radical operation with colostomy and lymhadenoctomy would increase chances much more.

4. advised my penfriend's mother to have sentinel node biopsy and it showed metas in groin nodes. But melanoma was also in pelvic  ones which were not showed by sentinel node biopsy.

5. In Dana Faber in Boston doctors told my penfriend's mother not to it (she finally did it as I wrote above).

A year ago, as my mother was diagnosed, I did some research in the Internet and I found some articles in medical journals about sentinel node biopsy in anal mucous melanoma. They discuss if sentinel node biopsy is useful and they don't come to clear conclusions. These are just few.

http://www.jcancer.org/v03p0449.htm

http://nuclmed.web.auth.gr/magazine/eng/jan08/39.pdf

http://www.google.pl/url?sa=t&rct=j&q=&esrc=s&source=web&cd=2&ved=0CCkQFjAB&url=http%3A%2F%2Fwww.researchgate.net%2Fpublication%2F51031074_Anorectal_melanoma_diagnosis_and_treatment%2Flinks%2F0912f510c18413308e000000.pdf&ei=W-quVOTKN5H5asvbgNAJ&usg=AFQjCNF2hsBHT0NWfEUQAbap3ZGJl_qDcw&sig2=a3fWhLAICAIZLOfjdZZCpw&bvm=bv.83134100,d.d2s

I hope you're doing well. My Mom is after dacarbazine (didn't help) and now after the first dosage of ipi.

Best,

Aleksandra

PS I hope now you have access to my email, I'm more than happy to keep in touch

Hi Jerry,

what I wrote is based on consultations with different doctors (altogether 5):

1. advised us to have it

2. told us, that the first one practices "academic medicine" and this method is not very trustworthy. Lympha might go to groin nodes (these can be checked), but as well to mesorectum and pelvic ones and there is problem to detect and with some of them to take them out.

3. was of similar opinion as the second one. He summed up, that sentinel node biopsy can be done, but not doing it is not a mistake. His opinion was that radical operation with colostomy and lymhadenoctomy would increase chances much more.

4. advised my penfriend's mother to have sentinel node biopsy and it showed metas in groin nodes. But melanoma was also in pelvic  ones which were not showed by sentinel node biopsy.

5. In Dana Faber in Boston doctors told my penfriend's mother not to it (she finally did it as I wrote above).

A year ago, as my mother was diagnosed, I did some research in the Internet and I found some articles in medical journals about sentinel node biopsy in anal mucous melanoma. They discuss if sentinel node biopsy is useful and they don't come to clear conclusions. These are just few.

http://www.jcancer.org/v03p0449.htm

http://nuclmed.web.auth.gr/magazine/eng/jan08/39.pdf

http://www.google.pl/url?sa=t&rct=j&q=&esrc=s&source=web&cd=2&ved=0CCkQFjAB&url=http%3A%2F%2Fwww.researchgate.net%2Fpublication%2F51031074_Anorectal_melanoma_diagnosis_and_treatment%2Flinks%2F0912f510c18413308e000000.pdf&ei=W-quVOTKN5H5asvbgNAJ&usg=AFQjCNF2hsBHT0NWfEUQAbap3ZGJl_qDcw&sig2=a3fWhLAICAIZLOfjdZZCpw&bvm=bv.83134100,d.d2s

I hope you're doing well. My Mom is after dacarbazine (didn't help) and now after the first dosage of ipi.

Best,

Aleksandra

PS I hope now you have access to my email, I'm more than happy to keep in touch