› Forums › Cutaneous Melanoma Community › Newly Diagnosed – Need Advice Please
- This topic has 18 replies, 6 voices, and was last updated 11 years, 6 months ago by
amandamini.
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- October 23, 2012 at 11:46 am
Hello Everyone,
Hello Everyone,
My wife is 19 weeks pregnant with our first child and diagnosed with melanoma last Tuesday. It has been a very difficult time for mostly me – she has rock solid and positive as always. Back in August my wife finally went to a GP to have the mole looked at – about the size of a quarter then and noticable bumpy. The GP scheduled her for a biopsy mid-September with a plastic surgeon, and then last week he called my wife while I was at work, told her she had a type of skin cancer, referred her to a nose-ear-throat doctor for last Friday, assured her she "wasn't going to die or anything" and told her to call the nose-ear-throat doc to get the details. She called the NET office right away, but they did not have any paperwork yet so we waited until Friday to be told that it was "a very bad kind" of melanoma. Having very limited knowledge of what questions to ask (what stage?!!), we left the office in tears only to be referred to another NET doctor this Thursday (had to cancel our first ultrasound appt 🙁 ) at a major cancer hospital in Toronto. I have been learning more and more about this disease in the last couple weeks, from the thickness and size I can guess that her melanoma is stage II but there hasn't been any node testing to find out if this has metastasized. I am deathly scared and feel that this is not moving fast enough – I have noticed the melanoma grow even since the Sept 18th biopsy.
My wife is wonderfully optimistic about the whole ordeal, but I just want to get the excision done – enough "consultations" already! Is this the normal process? Is there anyone I should be contacting?
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- October 23, 2012 at 1:23 pm
Good morning, so sorry to hear about your wife. I would consider contacting someone in the melanoma department at Sloane Kettering. Without contacting them and getting the best and latest information, I don't think my husband would be a 1 + year survivor today.
Questions we have learned to ask is the depth of the cancer, of course stage, what treatment options are available, clinical trials (check with NIH), type of melanoma.
Do some research on the latest drugs available as well and don't be afraid to contact the drug companies directly as they have information that you won't find anywhere else.
The best advice I can give you is DON'T GIVE UP, be aggressive and question everything.
Best to you and your wife.
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- October 23, 2012 at 1:23 pm
Good morning, so sorry to hear about your wife. I would consider contacting someone in the melanoma department at Sloane Kettering. Without contacting them and getting the best and latest information, I don't think my husband would be a 1 + year survivor today.
Questions we have learned to ask is the depth of the cancer, of course stage, what treatment options are available, clinical trials (check with NIH), type of melanoma.
Do some research on the latest drugs available as well and don't be afraid to contact the drug companies directly as they have information that you won't find anywhere else.
The best advice I can give you is DON'T GIVE UP, be aggressive and question everything.
Best to you and your wife.
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- October 23, 2012 at 1:23 pm
Good morning, so sorry to hear about your wife. I would consider contacting someone in the melanoma department at Sloane Kettering. Without contacting them and getting the best and latest information, I don't think my husband would be a 1 + year survivor today.
Questions we have learned to ask is the depth of the cancer, of course stage, what treatment options are available, clinical trials (check with NIH), type of melanoma.
Do some research on the latest drugs available as well and don't be afraid to contact the drug companies directly as they have information that you won't find anywhere else.
The best advice I can give you is DON'T GIVE UP, be aggressive and question everything.
Best to you and your wife.
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- October 23, 2012 at 2:02 pm
HI, Kevin-
Oh, dear! What an emotinal roller coaster you and your wife have been on lately! You must both be feeling shell-shocked right now. But the first thing to do is take a deep breath and not panic. The vast majority of people who get melanoma do NOT ever have recurrances. I must say that I do not understand why you wife is being referred to an Ear Nose and Throat doctor instead of a dermatologist or surgeon who specializes in melanoma. Why is that?
The first thing you need to do is get a copy of your pathology report. Right now, I don't see that anybody has actually said that your wife has melanoma or has established a depth. As a matter of fact, from now on be sure to get copies of all your medical reports. That's important. Once you have your pathology report, post it here. Many people here have a lot of experience reading and interpreting path reports, and maybe we can help you.
I suspect that if this is melanoma, the next step would be a wide local incision (WLE) plus a sential node biopsy. The WLE will remove the rest of the mole and the SNB will let you know if there are any melanoma cells in the lymph nodes nearest to the mole. The doctors need both pieces of information before they can assign a stage to your wife's cancer. Please do let us know the results of those tests.
As for being pregnant– congratulations! (There! I said it!) There will most probably be no complications between the pregnancy and the melanoma; being pregnant won't stimulate the cancer and the cancer won't hurt the baby. There was an interesting thread here about melanoma and pregnancy titled "I really want another child". Check it out at http://www.melanoma.org/community/mpip-melanoma-patients-information-page/i-really-want-another-child
Try to take things one step at a time. You're going to be OK. Your wife and your baby are going to be OK. The endless waiting for this and that drives us all crazy, but really, things will work out in the end.
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- October 23, 2012 at 3:13 pm
Thank you both for your very kind and prompt replies
lucylu – I will contact Sloane Kettering today for some more information/local experts that I can go to with questions. We live in Ontario, Canada, so it may be fairly complicated to get healthcare in the US.
POW – My impression is that we're seeing ENT oncologists because of the melanoma's close proximity to my wife's ear. I think I also need to find a dermatologist who specializes in melanoma for consultation. The first specialist ENT doctor we saw told us it was a "very bad kind" of melanoma, and only noted that the size was "around 30mm wide" and "over 4mm deep" – which I later learned is the Breslow level. He did not, however, tell us how deep (if at all) the melanoma had gone into the dermis – and we were too shocked and uninformed to ask. After much research, I called his office to ask for the Clark level, but the file had already been sent to the next oncology specialist ENT surgeon – we'll have to wait until our Thursday surgery consultation to find out. I intend on getting a copy of all reports then. And thanks for the link to discussion of pregnancy with melanoma, that was our first concern for the ENT oncologist.
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- October 23, 2012 at 3:13 pm
Thank you both for your very kind and prompt replies
lucylu – I will contact Sloane Kettering today for some more information/local experts that I can go to with questions. We live in Ontario, Canada, so it may be fairly complicated to get healthcare in the US.
POW – My impression is that we're seeing ENT oncologists because of the melanoma's close proximity to my wife's ear. I think I also need to find a dermatologist who specializes in melanoma for consultation. The first specialist ENT doctor we saw told us it was a "very bad kind" of melanoma, and only noted that the size was "around 30mm wide" and "over 4mm deep" – which I later learned is the Breslow level. He did not, however, tell us how deep (if at all) the melanoma had gone into the dermis – and we were too shocked and uninformed to ask. After much research, I called his office to ask for the Clark level, but the file had already been sent to the next oncology specialist ENT surgeon – we'll have to wait until our Thursday surgery consultation to find out. I intend on getting a copy of all reports then. And thanks for the link to discussion of pregnancy with melanoma, that was our first concern for the ENT oncologist.
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- October 23, 2012 at 3:13 pm
Thank you both for your very kind and prompt replies
lucylu – I will contact Sloane Kettering today for some more information/local experts that I can go to with questions. We live in Ontario, Canada, so it may be fairly complicated to get healthcare in the US.
POW – My impression is that we're seeing ENT oncologists because of the melanoma's close proximity to my wife's ear. I think I also need to find a dermatologist who specializes in melanoma for consultation. The first specialist ENT doctor we saw told us it was a "very bad kind" of melanoma, and only noted that the size was "around 30mm wide" and "over 4mm deep" – which I later learned is the Breslow level. He did not, however, tell us how deep (if at all) the melanoma had gone into the dermis – and we were too shocked and uninformed to ask. After much research, I called his office to ask for the Clark level, but the file had already been sent to the next oncology specialist ENT surgeon – we'll have to wait until our Thursday surgery consultation to find out. I intend on getting a copy of all reports then. And thanks for the link to discussion of pregnancy with melanoma, that was our first concern for the ENT oncologist.
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- October 23, 2012 at 2:02 pm
HI, Kevin-
Oh, dear! What an emotinal roller coaster you and your wife have been on lately! You must both be feeling shell-shocked right now. But the first thing to do is take a deep breath and not panic. The vast majority of people who get melanoma do NOT ever have recurrances. I must say that I do not understand why you wife is being referred to an Ear Nose and Throat doctor instead of a dermatologist or surgeon who specializes in melanoma. Why is that?
The first thing you need to do is get a copy of your pathology report. Right now, I don't see that anybody has actually said that your wife has melanoma or has established a depth. As a matter of fact, from now on be sure to get copies of all your medical reports. That's important. Once you have your pathology report, post it here. Many people here have a lot of experience reading and interpreting path reports, and maybe we can help you.
I suspect that if this is melanoma, the next step would be a wide local incision (WLE) plus a sential node biopsy. The WLE will remove the rest of the mole and the SNB will let you know if there are any melanoma cells in the lymph nodes nearest to the mole. The doctors need both pieces of information before they can assign a stage to your wife's cancer. Please do let us know the results of those tests.
As for being pregnant– congratulations! (There! I said it!) There will most probably be no complications between the pregnancy and the melanoma; being pregnant won't stimulate the cancer and the cancer won't hurt the baby. There was an interesting thread here about melanoma and pregnancy titled "I really want another child". Check it out at http://www.melanoma.org/community/mpip-melanoma-patients-information-page/i-really-want-another-child
Try to take things one step at a time. You're going to be OK. Your wife and your baby are going to be OK. The endless waiting for this and that drives us all crazy, but really, things will work out in the end.
-
- October 23, 2012 at 2:02 pm
HI, Kevin-
Oh, dear! What an emotinal roller coaster you and your wife have been on lately! You must both be feeling shell-shocked right now. But the first thing to do is take a deep breath and not panic. The vast majority of people who get melanoma do NOT ever have recurrances. I must say that I do not understand why you wife is being referred to an Ear Nose and Throat doctor instead of a dermatologist or surgeon who specializes in melanoma. Why is that?
The first thing you need to do is get a copy of your pathology report. Right now, I don't see that anybody has actually said that your wife has melanoma or has established a depth. As a matter of fact, from now on be sure to get copies of all your medical reports. That's important. Once you have your pathology report, post it here. Many people here have a lot of experience reading and interpreting path reports, and maybe we can help you.
I suspect that if this is melanoma, the next step would be a wide local incision (WLE) plus a sential node biopsy. The WLE will remove the rest of the mole and the SNB will let you know if there are any melanoma cells in the lymph nodes nearest to the mole. The doctors need both pieces of information before they can assign a stage to your wife's cancer. Please do let us know the results of those tests.
As for being pregnant– congratulations! (There! I said it!) There will most probably be no complications between the pregnancy and the melanoma; being pregnant won't stimulate the cancer and the cancer won't hurt the baby. There was an interesting thread here about melanoma and pregnancy titled "I really want another child". Check it out at http://www.melanoma.org/community/mpip-melanoma-patients-information-page/i-really-want-another-child
Try to take things one step at a time. You're going to be OK. Your wife and your baby are going to be OK. The endless waiting for this and that drives us all crazy, but really, things will work out in the end.
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- October 23, 2012 at 8:41 pm
I think you need to establish the facts first of all. A copy of the pathology report is necessary. Only then will you know what you are dealing with, if anything.If it is melanoma and if it is deeper than 1mm then a sentinel lymph node biopsy would be performed before the WLE. However, the treatment options may be limited for now due to the pregnancy, but your oncologist will advise you on that score.
Melanomas have been known to grow in pregnancy, partly due to immunosuppression, growth hormones and increased melanin production, but the topic is still controversial and not everyone agrees, particularly on this forum.
If you post the pathology report then there a lot of people on the forum that can help you interpret it. One more thing, the Clark level is only relevant for thin melanomas.
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- October 23, 2012 at 8:41 pm
I think you need to establish the facts first of all. A copy of the pathology report is necessary. Only then will you know what you are dealing with, if anything.If it is melanoma and if it is deeper than 1mm then a sentinel lymph node biopsy would be performed before the WLE. However, the treatment options may be limited for now due to the pregnancy, but your oncologist will advise you on that score.
Melanomas have been known to grow in pregnancy, partly due to immunosuppression, growth hormones and increased melanin production, but the topic is still controversial and not everyone agrees, particularly on this forum.
If you post the pathology report then there a lot of people on the forum that can help you interpret it. One more thing, the Clark level is only relevant for thin melanomas.
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- October 23, 2012 at 8:41 pm
I think you need to establish the facts first of all. A copy of the pathology report is necessary. Only then will you know what you are dealing with, if anything.If it is melanoma and if it is deeper than 1mm then a sentinel lymph node biopsy would be performed before the WLE. However, the treatment options may be limited for now due to the pregnancy, but your oncologist will advise you on that score.
Melanomas have been known to grow in pregnancy, partly due to immunosuppression, growth hormones and increased melanin production, but the topic is still controversial and not everyone agrees, particularly on this forum.
If you post the pathology report then there a lot of people on the forum that can help you interpret it. One more thing, the Clark level is only relevant for thin melanomas.
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- October 23, 2012 at 10:08 pm
Just to clarify, Clark level is only relevant for thin melanomas less than 1mm in the rare event that the mitotic rate is not known. If the mitotic rate cannot be read, clark 4 or 5 will push the stage to 1b. Otherwise, if the mitotic rate is less than 1 per square mm and the melanoma is not ulcerated, it will be stage 1a regardless of Clark level. The research undertaken for the 2009 AJCC staging review determined that, for thin melanomas, Clark level was statistically insignificant when Breslow depth, ulceration and mitotic rate was taken into account.
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- October 23, 2012 at 10:08 pm
Just to clarify, Clark level is only relevant for thin melanomas less than 1mm in the rare event that the mitotic rate is not known. If the mitotic rate cannot be read, clark 4 or 5 will push the stage to 1b. Otherwise, if the mitotic rate is less than 1 per square mm and the melanoma is not ulcerated, it will be stage 1a regardless of Clark level. The research undertaken for the 2009 AJCC staging review determined that, for thin melanomas, Clark level was statistically insignificant when Breslow depth, ulceration and mitotic rate was taken into account.
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- October 31, 2012 at 10:23 pm
I too found a mole on my back while pregnant. I was not as smart as your wife and did not have it looked at until Oct of this year. I had my baby girl in May so I let it ride for a few months. I am stage 2 clarks level 4. I am not sure what the treatment plan will be for your wife but know that it will be ok! When I first recieved the diagnoses I could not believe it. I had a 4 month old… It has been a month now. I had the SNB and the WLE. IT did not spread! I will be taking interferon for a year but all in all the outlook is good. I know how scared you are! Everyone is correct GET THE FACTS. No what you are dealing with. I will be praying for you and your family. Please keep is updated.
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- October 31, 2012 at 10:23 pm
I too found a mole on my back while pregnant. I was not as smart as your wife and did not have it looked at until Oct of this year. I had my baby girl in May so I let it ride for a few months. I am stage 2 clarks level 4. I am not sure what the treatment plan will be for your wife but know that it will be ok! When I first recieved the diagnoses I could not believe it. I had a 4 month old… It has been a month now. I had the SNB and the WLE. IT did not spread! I will be taking interferon for a year but all in all the outlook is good. I know how scared you are! Everyone is correct GET THE FACTS. No what you are dealing with. I will be praying for you and your family. Please keep is updated.
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- October 31, 2012 at 10:23 pm
I too found a mole on my back while pregnant. I was not as smart as your wife and did not have it looked at until Oct of this year. I had my baby girl in May so I let it ride for a few months. I am stage 2 clarks level 4. I am not sure what the treatment plan will be for your wife but know that it will be ok! When I first recieved the diagnoses I could not believe it. I had a 4 month old… It has been a month now. I had the SNB and the WLE. IT did not spread! I will be taking interferon for a year but all in all the outlook is good. I know how scared you are! Everyone is correct GET THE FACTS. No what you are dealing with. I will be praying for you and your family. Please keep is updated.
-
- October 23, 2012 at 10:08 pm
Just to clarify, Clark level is only relevant for thin melanomas less than 1mm in the rare event that the mitotic rate is not known. If the mitotic rate cannot be read, clark 4 or 5 will push the stage to 1b. Otherwise, if the mitotic rate is less than 1 per square mm and the melanoma is not ulcerated, it will be stage 1a regardless of Clark level. The research undertaken for the 2009 AJCC staging review determined that, for thin melanomas, Clark level was statistically insignificant when Breslow depth, ulceration and mitotic rate was taken into account.
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Tagged: cutaneous melanoma
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