› Forums › General Melanoma Community › Primary vs. secondary site nodular melanoma
- This topic has 18 replies, 5 voices, and was last updated 13 years, 6 months ago by
r.richad.
- Post
-
- March 30, 2011 at 5:34 am
Hi All! I am so happy to find you! I am a fulltime parent of 2 young children and after growing up in sunny So. Cal., was diagnosed with Nodular Melanoma about a month ago, a day before my birthday, have had PET/CT w/contrast, WLE and SNB. Node is clear, excision is clear and is localized to the arm. Melanoma was found in the adipose tissue and a "small cluster of malignant melanoma discontinuous w/ main bulk of tumor". However, the pathologist cannot determine if this tumor is the primary or secondary site!
Hi All! I am so happy to find you! I am a fulltime parent of 2 young children and after growing up in sunny So. Cal., was diagnosed with Nodular Melanoma about a month ago, a day before my birthday, have had PET/CT w/contrast, WLE and SNB. Node is clear, excision is clear and is localized to the arm. Melanoma was found in the adipose tissue and a "small cluster of malignant melanoma discontinuous w/ main bulk of tumor". However, the pathologist cannot determine if this tumor is the primary or secondary site! The original shave biopsy came back with at least a Breslow of 1.8 and Clark level IV deferring to final path report after WLE.
Blood work has been unremarkable, except for a mitotic index of 9. There is no ulceration, no lymph-vascular invasion, perineural invasion to identified, tumor infiltrating lymphocytes and regression are absent,
A final complication is that I have had rheumatoid arthritis for 25 years with several treatments that suppress my immune system.
According to my oncologist, I "have a very unusual tumor". With this info, I really don't know what to do. Do I look into trials, get a second opinion, push for a certain treatment, if at all?
Any suggestions are so much appreciated!
- Replies
-
-
- March 30, 2011 at 6:00 pm
Hi,
It sounds like you are currently most likely stage 1b or 2a (bacause of the at least Breslow of 1.8 mm comment) What did the doctor say?
Good thing is that your node(s) are clear. Bad thing is there is not really too much to do in terms of clinical trials for these stages.
Do to the shave bioipsy possibly being transected, and the tumor possibly being deeper, has the use of interferon been discussed? I believe that has been mentioned here on the board in the past.
Also, are you being seen by by a melanoma center of excellence? A second opinion is never a bad idea either.
Good luck,
Michael
-
- June 23, 2011 at 11:25 am
My eyesight is horrible (-5.25 and -6.25). I used to wear contacts, but switched to glasses last year. I like wearing glasses, but I don’t like not being able to see anything when they are off. So I’m considering a Lasik laser .
-
- June 23, 2011 at 11:25 am
My eyesight is horrible (-5.25 and -6.25). I used to wear contacts, but switched to glasses last year. I like wearing glasses, but I don’t like not being able to see anything when they are off. So I’m considering a Lasik laser .
-
- March 30, 2011 at 6:00 pm
Hi,
It sounds like you are currently most likely stage 1b or 2a (bacause of the at least Breslow of 1.8 mm comment) What did the doctor say?
Good thing is that your node(s) are clear. Bad thing is there is not really too much to do in terms of clinical trials for these stages.
Do to the shave bioipsy possibly being transected, and the tumor possibly being deeper, has the use of interferon been discussed? I believe that has been mentioned here on the board in the past.
Also, are you being seen by by a melanoma center of excellence? A second opinion is never a bad idea either.
Good luck,
Michael
-
- March 30, 2011 at 6:58 pm
There are times when it isn't really possible to determine if a site is primary or secondary. Do a search for "Carver" in the patient profiles. She had a deep lesion, but it wasn't conclusive whether her's was primary or secondary. I definitely think it wouldn't hurt to have the slides sent to another expert for their opinion.
I think there is a link between one of the drugs they use for RA and melanoma. For the life of me, I can't remember the name, however. I know someone with Lupus who was on this drug and later diagnosed with a stage I melanoma.
I'd get another opinion and see what happens there before I'd push for any treatment. Find a center that has a big melanoma department and send your slides there. You want someone to read them who sees lots of melanoma.
Best wishes,
Janner
-
- April 1, 2011 at 5:11 am
Hi Janner, I was able to find Carver and looked at her blog for for awhile. She is a prolific writer so I still need to find more info.Many of the RA meds I took before melanoma came for a visit increased my risk of cancer. I knowingly agreed to the treatment. I had recently started on Actemra which has been FDa approved for about 15 months. I believe this is the culprit but don’t know if I will ever know.
I currently take leuflenomide for the RA which I believe is in a trial for melanoma treatment.
Thanks for your advice. I did get a few updates from my path report which I posted in a reply I made in this thread.
-
- April 1, 2011 at 5:11 am
Hi Janner, I was able to find Carver and looked at her blog for for awhile. She is a prolific writer so I still need to find more info.Many of the RA meds I took before melanoma came for a visit increased my risk of cancer. I knowingly agreed to the treatment. I had recently started on Actemra which has been FDa approved for about 15 months. I believe this is the culprit but don’t know if I will ever know.
I currently take leuflenomide for the RA which I believe is in a trial for melanoma treatment.
Thanks for your advice. I did get a few updates from my path report which I posted in a reply I made in this thread.
-
- March 30, 2011 at 6:58 pm
There are times when it isn't really possible to determine if a site is primary or secondary. Do a search for "Carver" in the patient profiles. She had a deep lesion, but it wasn't conclusive whether her's was primary or secondary. I definitely think it wouldn't hurt to have the slides sent to another expert for their opinion.
I think there is a link between one of the drugs they use for RA and melanoma. For the life of me, I can't remember the name, however. I know someone with Lupus who was on this drug and later diagnosed with a stage I melanoma.
I'd get another opinion and see what happens there before I'd push for any treatment. Find a center that has a big melanoma department and send your slides there. You want someone to read them who sees lots of melanoma.
Best wishes,
Janner
-
- March 30, 2011 at 8:18 pm
I had some confusing, or as the second pathologist put it "intrusting and difficult case slides". My slides ended up seeing a couple of different pathologist at 4 different hospitals. I think the pathologist that gave the best and most detailed report was David E. Elder from the University of Pennsylvania. I ALWAYS gets a second opinion on things, and in the case I ended up with 4 different reports. You can request that you get a second opinion on just the pathology or everything in general, even requesting where they send them. I would definitely get the opinion of another pathologist. Good luck!!!
-
- April 1, 2011 at 1:22 pm
I have never requested it, but since we are the patient I think we should be able to. I see no reason why we can't say "I would really like a second opinion from this guy". I have 4 different path reports for the same thing…..one of the reports is 1/3 of page…the one that I got from him is 1 1/2 pages. He is just very detailed. I also believe that he is well known. My current oncologist at Rush Univ. in Chicago is the one that sent my slides to him, and then when my Derm doc saw the new path report he knew of him and said that he was very good. He also said another one of the path guys was good too. I think that if you go to any well known melanoma specialist you will get an idea of what you want to do as the patient. I love google-you can really learn a lot about a doctor.
Best of Luck!
-
- April 1, 2011 at 1:22 pm
I have never requested it, but since we are the patient I think we should be able to. I see no reason why we can't say "I would really like a second opinion from this guy". I have 4 different path reports for the same thing…..one of the reports is 1/3 of page…the one that I got from him is 1 1/2 pages. He is just very detailed. I also believe that he is well known. My current oncologist at Rush Univ. in Chicago is the one that sent my slides to him, and then when my Derm doc saw the new path report he knew of him and said that he was very good. He also said another one of the path guys was good too. I think that if you go to any well known melanoma specialist you will get an idea of what you want to do as the patient. I love google-you can really learn a lot about a doctor.
Best of Luck!
-
- March 30, 2011 at 8:18 pm
I had some confusing, or as the second pathologist put it "intrusting and difficult case slides". My slides ended up seeing a couple of different pathologist at 4 different hospitals. I think the pathologist that gave the best and most detailed report was David E. Elder from the University of Pennsylvania. I ALWAYS gets a second opinion on things, and in the case I ended up with 4 different reports. You can request that you get a second opinion on just the pathology or everything in general, even requesting where they send them. I would definitely get the opinion of another pathologist. Good luck!!!
-
Tagged: cutaneous melanoma
- You must be logged in to reply to this topic.