› Forums › General Melanoma Community › New and some questions
- This topic has 12 replies, 2 voices, and was last updated 13 years, 4 months ago by
Janner.
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- December 31, 2011 at 9:40 pm
Hi all and Happy New Year!
I am most grateful for this resource and appreciate you sharing your experiences.
I know I am lucky, my melanomas were all caught early. Still does not make it any less terrifying or panic me about the future.
Hi all and Happy New Year!
I am most grateful for this resource and appreciate you sharing your experiences.
I know I am lucky, my melanomas were all caught early. Still does not make it any less terrifying or panic me about the future.
To start I was diagnosed with my first melanoma 10 years ago…it was on the underside of my forearm, a simple freckle that itched. I was pregnant at the time so I asked my ob who said to have it looked at by a derm. Since I did not have one at the time I went to a friend of mines father who diagnosed it as in situ and excised it. He really made no to do about it…no follow up was scheduled. (He was a much older doctor and before google was a verb)
I just recently had surgery on December 16th to remove a .75mm, clark's level III from my left breast, also a melanoma in situ as well on my left breast, a SNLB under my arm and four additional biopsies on my right breast. I recently got the results and my margins are clear, SNLB negative and biopsies clear with exception of one being atypical.
A few question and sorry they are all over the place:
Is it odd that I had two melanomas so close together (geographically and time) and on a non sun exposed area?
I am horribly paranoid that the beast will return, how do you cope with that being in the back of your head all the time?
What else should I be doing proactively for my care…..I have met with a surgeon obviously…but couldn't originally get in with a derm in an appropriate amount of time so had a general doctor biopsy it for me and sent me to a surgeon. Do I need to meet with an oncologist? I do have an appointment with a new Dermatologist next week that was recommend to me from a woman I met locally that had melanoma.
Also my surgeon recommended genetic counseling. I do not have contact with my father or know much about that side of the family except my grandmother died of cancer, but do not know what type. Is there a benefit to genetic counseling/testing for melanoma? My dr mentioned that a small percentage of melanoma is familial and that type can has a high incidence pancreatic cancer. Thus would be beneficial to know so I could have yearly testing to monitor signs of that.
Thank you for any info or feedback 🙂
TracyP
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- December 31, 2011 at 10:08 pm
Geography isn't surprising. Multiple primaries aren't all that common. Only about 8% have more than one. Having them close or having them far apart – isn't really studied. I've had 3. One on each leg and one on my back. Melanoma doesn't only show up on sun exposed areas – it can show up anywhere. As far as genetic testing, I've been there and done that. Before I say anything else, let me say this. If you are really considering it, I suggest you talk to a genetic counselor first. I found out as part of a clinical study and talking to a genetic counselor was mandatory before you got your results. I highly recommend that. Typically, they want at least 3 family members in multiple generations and/or someone with 3+ primaries. (The defect doesn't skip generations). 3 seems to be more a magic cutoff. I've been tested and am positive for the CDKN2A defect. I was given a 76% lifetime risk of getting melanoma. Only about 2-4% of the melanoma population have this defect. Yes, I also have a higher risk for other types of cancer including pancreatic cancer. My particular defect gives me a 11% lifetime risk for pc. General population is <1%. I originally had an endoscopic ultrasound and MRI with contrast to look for any problems. However, I haven't followed up with this. There are no "symptoms" I can look out for. By time you have symptoms, it is generally too late. The other issue is insurance. Insurance companies just don't like to pay for scans for someone who is at high risk via genetic testing. In fact, when I had my original scans, I had lost some weight INTENTIONALLY. On the medical coding, they put UNEXPLAINED WEIGHT LOSS so the insurance would pay for the scans. Insurance sucks when it comes to this type of stuff. And I don't really like them to know I'm high risk for another type of cancer. I don't like having to come up with excuses to have scans, and I also don't want to pay for them totally out of pocket either.
You are newly diagnosed. Things are scary but you are still in a good position. Everything does get easier with time. My first primary was in 1992. #2 and #3 were a year apart, but I know #3 was around even before #2 was removed (long story). If it were me, I'd probably pass on the genetic testing unless I had a stronger reason to suspect it. Yes, I know I have it. But in truth, it has changed nothing in how I am treated or how I live my life. It really added no benefit except extra stress.
Hang in there. Best wishes,
Janner
p.s. I had to smile. I scrolled down to type in the code to post this reply. The code started with p16 which is another name for the CDKN2A defect I have.
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- December 31, 2011 at 10:08 pm
Geography isn't surprising. Multiple primaries aren't all that common. Only about 8% have more than one. Having them close or having them far apart – isn't really studied. I've had 3. One on each leg and one on my back. Melanoma doesn't only show up on sun exposed areas – it can show up anywhere. As far as genetic testing, I've been there and done that. Before I say anything else, let me say this. If you are really considering it, I suggest you talk to a genetic counselor first. I found out as part of a clinical study and talking to a genetic counselor was mandatory before you got your results. I highly recommend that. Typically, they want at least 3 family members in multiple generations and/or someone with 3+ primaries. (The defect doesn't skip generations). 3 seems to be more a magic cutoff. I've been tested and am positive for the CDKN2A defect. I was given a 76% lifetime risk of getting melanoma. Only about 2-4% of the melanoma population have this defect. Yes, I also have a higher risk for other types of cancer including pancreatic cancer. My particular defect gives me a 11% lifetime risk for pc. General population is <1%. I originally had an endoscopic ultrasound and MRI with contrast to look for any problems. However, I haven't followed up with this. There are no "symptoms" I can look out for. By time you have symptoms, it is generally too late. The other issue is insurance. Insurance companies just don't like to pay for scans for someone who is at high risk via genetic testing. In fact, when I had my original scans, I had lost some weight INTENTIONALLY. On the medical coding, they put UNEXPLAINED WEIGHT LOSS so the insurance would pay for the scans. Insurance sucks when it comes to this type of stuff. And I don't really like them to know I'm high risk for another type of cancer. I don't like having to come up with excuses to have scans, and I also don't want to pay for them totally out of pocket either.
You are newly diagnosed. Things are scary but you are still in a good position. Everything does get easier with time. My first primary was in 1992. #2 and #3 were a year apart, but I know #3 was around even before #2 was removed (long story). If it were me, I'd probably pass on the genetic testing unless I had a stronger reason to suspect it. Yes, I know I have it. But in truth, it has changed nothing in how I am treated or how I live my life. It really added no benefit except extra stress.
Hang in there. Best wishes,
Janner
p.s. I had to smile. I scrolled down to type in the code to post this reply. The code started with p16 which is another name for the CDKN2A defect I have.
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- December 31, 2011 at 10:11 pm
One more thing – an oncologist isn't really going to do anything for you. You don't have active disease. You are really more concerned about watching for other primaries which is the derm's bailiwick. You can see an oncologist if you want, but I really haven't seen a need. My derm is a cutaneous oncologist. He specializes in skin cancers and cutaneous lymphoma. That makes more sense to me than a medical oncologist at this point. If it were to have metastases, obviously that would change. But for almost 20 years now, dermatologists have served me well.
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- December 31, 2011 at 10:11 pm
One more thing – an oncologist isn't really going to do anything for you. You don't have active disease. You are really more concerned about watching for other primaries which is the derm's bailiwick. You can see an oncologist if you want, but I really haven't seen a need. My derm is a cutaneous oncologist. He specializes in skin cancers and cutaneous lymphoma. That makes more sense to me than a medical oncologist at this point. If it were to have metastases, obviously that would change. But for almost 20 years now, dermatologists have served me well.
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- January 1, 2012 at 4:15 pm
Some institutions do blood work, some do chest x-rays, some do neither. There are no blood tests for melanoma so blood work at stage I is iffy at best. Chest x-rays the same way. Why check for lung metastases when you have such an extremely thin lesion. I, personally, don't see the point of either for stage I. You can do bloodwork as a normal part of an annual physical if that makes sense. I don't do either test for my melanoma. Since the most likely place to have metastases is in the lymph node basins, ask your doctor to show you which basins to check and how to palpate them to check for problems. To me, that makes more sense than any other type of test. As for scans, they just aren't done for stage I.
Best wishes,
Janner
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- January 1, 2012 at 4:15 pm
Some institutions do blood work, some do chest x-rays, some do neither. There are no blood tests for melanoma so blood work at stage I is iffy at best. Chest x-rays the same way. Why check for lung metastases when you have such an extremely thin lesion. I, personally, don't see the point of either for stage I. You can do bloodwork as a normal part of an annual physical if that makes sense. I don't do either test for my melanoma. Since the most likely place to have metastases is in the lymph node basins, ask your doctor to show you which basins to check and how to palpate them to check for problems. To me, that makes more sense than any other type of test. As for scans, they just aren't done for stage I.
Best wishes,
Janner
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- January 1, 2012 at 4:15 pm
Some institutions do blood work, some do chest x-rays, some do neither. There are no blood tests for melanoma so blood work at stage I is iffy at best. Chest x-rays the same way. Why check for lung metastases when you have such an extremely thin lesion. I, personally, don't see the point of either for stage I. You can do bloodwork as a normal part of an annual physical if that makes sense. I don't do either test for my melanoma. Since the most likely place to have metastases is in the lymph node basins, ask your doctor to show you which basins to check and how to palpate them to check for problems. To me, that makes more sense than any other type of test. As for scans, they just aren't done for stage I.
Best wishes,
Janner
-
- December 31, 2011 at 10:11 pm
One more thing – an oncologist isn't really going to do anything for you. You don't have active disease. You are really more concerned about watching for other primaries which is the derm's bailiwick. You can see an oncologist if you want, but I really haven't seen a need. My derm is a cutaneous oncologist. He specializes in skin cancers and cutaneous lymphoma. That makes more sense to me than a medical oncologist at this point. If it were to have metastases, obviously that would change. But for almost 20 years now, dermatologists have served me well.
-
- December 31, 2011 at 10:08 pm
Geography isn't surprising. Multiple primaries aren't all that common. Only about 8% have more than one. Having them close or having them far apart – isn't really studied. I've had 3. One on each leg and one on my back. Melanoma doesn't only show up on sun exposed areas – it can show up anywhere. As far as genetic testing, I've been there and done that. Before I say anything else, let me say this. If you are really considering it, I suggest you talk to a genetic counselor first. I found out as part of a clinical study and talking to a genetic counselor was mandatory before you got your results. I highly recommend that. Typically, they want at least 3 family members in multiple generations and/or someone with 3+ primaries. (The defect doesn't skip generations). 3 seems to be more a magic cutoff. I've been tested and am positive for the CDKN2A defect. I was given a 76% lifetime risk of getting melanoma. Only about 2-4% of the melanoma population have this defect. Yes, I also have a higher risk for other types of cancer including pancreatic cancer. My particular defect gives me a 11% lifetime risk for pc. General population is <1%. I originally had an endoscopic ultrasound and MRI with contrast to look for any problems. However, I haven't followed up with this. There are no "symptoms" I can look out for. By time you have symptoms, it is generally too late. The other issue is insurance. Insurance companies just don't like to pay for scans for someone who is at high risk via genetic testing. In fact, when I had my original scans, I had lost some weight INTENTIONALLY. On the medical coding, they put UNEXPLAINED WEIGHT LOSS so the insurance would pay for the scans. Insurance sucks when it comes to this type of stuff. And I don't really like them to know I'm high risk for another type of cancer. I don't like having to come up with excuses to have scans, and I also don't want to pay for them totally out of pocket either.
You are newly diagnosed. Things are scary but you are still in a good position. Everything does get easier with time. My first primary was in 1992. #2 and #3 were a year apart, but I know #3 was around even before #2 was removed (long story). If it were me, I'd probably pass on the genetic testing unless I had a stronger reason to suspect it. Yes, I know I have it. But in truth, it has changed nothing in how I am treated or how I live my life. It really added no benefit except extra stress.
Hang in there. Best wishes,
Janner
p.s. I had to smile. I scrolled down to type in the code to post this reply. The code started with p16 which is another name for the CDKN2A defect I have.
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