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April 1, 2013 at 6:59 am #21152
I was diagnosed with Amelanotic Nodular Melanoma on the top of my left foot in late December 2012. The dermatopathology report noted 3.2mm depth invasion, no ulceration, moderate amount of tumor infiltrating lymphocytes, no evident intravascular invasion is present and occasional mycosis is seen but it is at a rate less than 1 per mm sq. I also cat a CAT scan and PET scan in early January 2013 both of which indicated no evidence of metastatic disease. On January 31, 2013 I had a WLE and SLNB. Pathology for this procedure indicated that all three lymph nodes removed were negative for metastatic malignant melanoma and the WLE indicated “No residual malignant melanoma seen in this totally embedded previous biopsy site. Sample peripheral and deep margins of resection; negative.” So this puts me at Stage 2A. I feel very thankful and extremely fortunate that the lymph nodes were clear and there was no residual melanoma since from what I have read, nodular melanoma tends to grow deep quickly and become invasive and my initial biopsy was a shave biopsy. Oddly, it appears that the tumor grew up from the dermis rather than deep into the skin layers like typical nodular melanomas.
After several delays the Tumor Board has finally met to review my case and my surgeon informed me on Friday, March 29,2013 that they are recommending that my ongoing treatment consist of yearly chest x-rays, yearly blood work, skin exams at least twice yearly and interferon treatment. They feel that my tumor is high risk for reoccurrence and he is referring me to a Medical Oncologist in regards to interferon.
So does anyone have any input regarding the Tumor Board’s recommended ongoing treatment especially interferon? From what I have read interferon isn’t typically considered for stage 2A. It also seems that the side effects of interferon may not outweigh the benefits. I also thought that interferon needed to be started shortly after surgery and my surgery was two months ago. I realize that since my melanoma was nodular and 3.2mm it is a higher risk tumor however I think that the rest of my pathology looks okay.
I want to make an informed decision regarding my ongoing care and any information or suggestions are appreciated.April 1, 2013 at 11:42 am #59885
Interferon was discussed by the American Society of Clinical Oncologists (ASCO) in a recent statement as “not increasing overall survival.” ASCO is the largest oncology group in the world. Many of the leading melanoma institutions stopped prescribing interferon years ago, that includes Sloan Kettering and Johns Hopkins. The last research on it showed perhaps increased time before relapse, but it does not prevent relapse. Where are you going for treatment? There are better stage 3 drugs coming up through research, but still in trial. The cost/benefit issue should be weighed carefully with interferon. But it is your body and you should be armed with facts and questions to ask. Be sure to look up previous discussions here by putting interferon in the SEARCH box. Let us know how you are doing. (PS having the melanoma in your lower extemity lowers your risk! And I have not heard of amelanotic nodular, maybe a second opinion on the pathology would be a good idea!)April 1, 2013 at 7:20 pm #59886 Catherine,
Thank you so very much for your quick reply. I am currently being treated at Loma Linda University Cancer Center in Southern California. My primary care group for a second opinion referred me to this facility whereas they reviewed my slides, pathology report, x-rays and scans and then confirmed the initial diagnosis.
“Amelanotic” indicates no color. Unlike typical melanoma skin lesions that seem to be dark in color my tumor/mole was actually reddish-pink in color. The tumor started in an existing flat mole I’ve had for probably 35 years. In late July 2012 the mole started to change appearance becoming increasingly raised and crusty along with becoming tender to the touch. I was actually seen by my primary care physician in early September 2012 when the mole continued to “look weird” however she didn’t think it was cancerous. At my urging to have it removed she referred me to a dermatologist indicating, ‘Those have a lot of veins in them so let’s have an expert remove it’. It took over three months to see the dermatologist, another three weeks to get the biopsy results, five more weeks until WLE and SLNB surgery, two more weeks for these pathology results and four weeks from the WLE and SLNB surgery for skin graft surgery. As most on this board will agree the waiting is tough and I am thankful that since my initial diagnosis the news has been very good so far.
Anyway, at this point I think Loma Linda has provided me with good surgical care but I was waiting to hear what the Tumor Board would recommend for my ongoing treatment/monitoring. I am particularly concerned with their suggestion of interferon treatment since what I have read seems to increasingly indicate that the benefits don’t out weight the toxic side effects. On the other hand I don’t want to disregard treatment that could be beneficial. I had intended to submit my information to a Melanoma Center for another opinion not so much regarding my diagnosis but suggested ongoing care. I am under the impression that some of these centers will review your case for a fee and offer suggestions regarding care even if you are not technically their patient. Do you suggest a particular center in California that can do this?April 2, 2013 at 2:32 pm #59887chas66Participant
Hi, diagnosed stage 2B in December, Breslow 4.5, nodular melanoma. I was on the fence about interferon and decided against it. I’m surprised your docs suggested it for 2A, I was under the impression from my oncologists that if my Breslow was less than 4, they would not have suggested interferon. However, it just goes to show the varying opinions on how to treat the disease.
Why did I not take the interferon? I didn’t think the benefits (8% inmprovement in possibly eliminating recurrence) outweighed the side effects and the fact that I don’t show the melanoma at this point (WLE, clear margins- SNLB- clear).
If my lymph nodes showed cancer, I would have done the interferon or a clinical trial using other immunotherapies. My plan is to still do that if I progress to a further stage.April 4, 2013 at 3:27 am #59888
Thank you Chas66 for the information and opinion on interferon. Since my original post I have made an appointment with a Melanoma Specialist in the Los Anegles area for April 18, 2013. Over the phone the specialist asked me a few questions regarding the details of my melanoma and he too seemed to somewhat question the suggestion of interferon in my case. So at this point I am going to see what the specialist recommends and make a decision from there.April 4, 2013 at 4:04 pm #59889 I think what Chas was referring to is the 8% of population that may have a delay in recurrence when they do interferon. However, it does not prevent recurrence nor does it increase overall survival. Good luck with your appointment and let us know how you are doing!April 5, 2013 at 2:16 pm #59890chas66ParticipantCatherine Poole wrote:
I think what Chas was referring to is the 8% of population that may have a delay in recurrence when they do interferon. However, it does not prevent recurrence nor does it increase overall survival. Good luck with your appointment and let us know how you are doing!
Hey Catherine, if Recurrent Free Survival shows an 8% improvement, why would that not equate to 8% that would not have a recurrence?
For example, the way they come up with the number is, out of 200 people, 100 on interferon, 100 on observation, 8 more people in the interferon group would not have a recurrence in relation to the observation group (that’s my understanding from oncologists who recommend interferon).
The oncologists who recommend interferon are prepared to say both RFS and OS are improved (whether one agrees or not) just by the way they interpret the 3 trials, although they like to mostly consider ECOG 1684.
It really is a matter of which oncologists you talk to. I just wish they were all in the same boat.
I’ve got a friend, Stage 3B, did the interferon, 10 years later, no recurrence. That’s the argument in the pro interferon group, inteferon = 8% increase in RFS/OS. She’s an example of where the 8% comes from.April 5, 2013 at 2:45 pm #59891
The studies I looked at (long ago) said that interferon “delayed” recurrence in 8% of people by one year, but did not prevent recurrence. And it does not prolong overall survival. Those who don’t recur after inteferon, probably weren’t going to recur anyway. No way to tell with stage three disease which has really good odds usually of not recurring, but we don’t have measureable disease to test stage three disease drugs with, so it is very hard to tell. My overwhelming opinion not in favor of it comes from many of my scientific board who consider it an inferior drug that robs folks of quality of life without providing much in return.April 20, 2013 at 4:47 pm #59892 Well my visit to a Melanoma Specialist was time and money well spent. The Dr. stated that he would not recommend interferon treatment in my case, in fact he would strongly argue against it. He felt that interferon would be over-treatment in my case with little to no benefit. Although I was already leaning toward declining this treatment it was important for me to hear it from a specialist.
The doctor was very encouraging regarding my overall prognosis. He told me I should disregard all of the melanoma survival data I’ve read about on the Internet because in the last two years treatment options have changed improving these statistics particularly in metastatic disease.
He agreed that my ongoing care should include yearly blood work and chest x-rays and recommended that I see a Dermatologist every six months and a Medical Oncologist every six months for the next two to three years staggering these appointments so I am seen by a doctor every three months.
He suggested that I have my tumor tissue tested now for certain mutations so that in the event I do have a reoccurrence we are better prepared on how to best treat it. He told me I should go enjoy my life and in the event of a reoccurrence, which he indicated statistically was less than 20% (far better than the 60% recurrence rate for my sized tumor that I had read about) it will be caught early and treated accordingly.
The doctor’s matter of fact, ‘this is treatable and you’re going to be fine’ approach was very comforting and I left his office feeling that I just might really be “okay”.April 20, 2013 at 5:25 pm #59893
Glad to hear you are seeing a specialist and have a plan. Knowing your BRAf status is a good idea. Hope you continue in good health and keep in touch.
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