It has been 5 yrs since I was first diagnosed with M/M . I noticed a change in a mole on my shoulder, went to the dermatologist for a punch biopsy which confirmed my suspicions, then to a surgeon who removed the lesion. The Sentinel Lymph Nodes were negative and I thought the discovery had been timely and I had dodged a bullet.
Eighteen months later I noticed a lump under the skin about 3" from the site of the original incision. At the time the lump was the size of a BB. I went back to the dermatologist for another punch biopsy which confirmed my suspicions.The surgeon, a local general practice surgeon, advised that the usual course was to observe such things for significant changes.
I was not satisfied and consulted an Oncologist. His primary diagnosis was M/M stage IV. I asked for options and he advised that I was not a candidate for a Clinical Trial based on my age (68) and other medical problems including hypertension and a pacemaker.After copnsulting with the original surgeon he referred me to Dr. Jose Slutsky at Mt. Sinai Hospital in Miami Beach. Slutsky's diagnosis was M/M stage III B with a recommendation for an immediate operation to remove the lesion.
This was done in October of 2002 and the surgery revealed no other sign of metastasis.
My initial discovery of the second lumnp had occurred in July, it took a month to get an appointment with the Oncologist then another five weeks for the consultation with Dr. Slutsky. During that period, approximately 2 1/2
months, the bb sized lump had grown to the size of a 00 buckshot, this was a fairly alarming development and indicated to me that I was dealing with an aggressive tumor.
I am thoroughly convinced that had I not been persistent with second opinions and consultations that my M/M would have spread to the point of being inoperable.
My advice to you is to establish a schedule of frequent Oncology visits, have at least one PET scan which can detect metastasis not visible on X-Ray, and have at least one CAT scan a year in the first three years.DEFINITELY ESTABLISH A RELATIONSHIP WITH A REPUTABLE ONCOLOGIST!!!
I have now progressed from visits with the Oncologist every month to every three months. I continue to see my dermatologist every three months and have routine treatment for superficial Basal Cell and Squamous Cell lesions.
To date there has been no recurrence
of the M/M. It has been 5 years since the initial diagnosis and 3 1/2 since the second
discovery.
This is a sneaky disease and can survive long periods of dormancy so stay alert and keep your spirits up,continue to see your Oncologist and read everything uyou can find out about the disease so that you can have an intellegent discussion at each office visit.