jagstter

I was 1st diagnosed by a local Dermatologist in July, 2015, after a quarter-sized mole (which had grown from non-existent, 1-1 1/2 year, earlier) bled severely a 2nd time & formed a 2nd thimble-sized dome, within 1 day. (It had actually started bleeding profusely in the shower in June; then in July, the 1st domed scab got bumped on a wall corner & separated, causing the 2nd nodule’s rapid growth. I was between jobs & had no healthcare, which stupidly delayed my visit to get it checked out. By July, I had no choice. Some friends helped connect me with a very kind Dermatologist, who diagnosed as Nodular Malignant Melanoma, Ulcerated, Clark’s Level IV, Breslow Depth 4.0mm, Mitotic Rate 33, w/ Lymphatic & Circulatory invasion. He assessed I was probably Stage IIIB & helped me connect w/ a local General Surgeon, who is well-regarded in my area. (BTW, there are no Melanoma Specialists, here & I have learned the hard way & through this site, just how important that is!!!)

The General Surgeon recommended SNB, along w/ WLE. After my clumsy research & resistance to the prospect of 2 surgical procedures (since I’m a musician & was scared of lymphedema), he agreed the SNB wasn’t essential & scheduled a PET/CT to determine any potential metastases. My wife & I determined if things were, in fact, systemic, I would forego treatment & enjoy my time w/ family. The scans fortunately came back clear, so surgery was performed in September, 2015. An 8″ 33-stitch excision w/ 7cm (!!!) margins showed clear & I started the recovery journey. Since he wasn’t a Melanoma Specialist, I had missed the opportunity to get clear staging via SNB & wish now I’d known better 🙁

After subsequent Basal Carcinoma (pinna, left ear) & 2 severely atypical dysplastic nevi were widely excised, August, 2016, I realized I needed treatment care by a dedicated melanoma medical team. I started @ M.D. Anderson, last Fall, 2016. Once there, 1 moderate-severely atypical dysplastic nevi was widely excised, December, 2016. I’ve continued to have regular 4-month interval blood, ultrasound & CT, without issue. Unfortunately, the latest 4 month follow-up Full-Body CT (August, 2017) shows probable metastases to both lungs w/ numerous nodules – 5 examples were cited by the Radiologist for reference, between 6-8mm, w/ ground glass attenuation. I’ve always had clear scans prior & have experienced no known lung infections that could explain it away. It was very difficult to hear & my wife, children & I are still processing the news & what it may likely portend. My doctor has scheduled me for a 2nd review in December, 2017 to confirm diagnosis & if necessary, conduct a biopsy. I wish I didn’t have to wait!

I have learned so much from this Forum & am grateful to all the knowledgeable contributors. It has been sad to see many losing their battles, over the past year or so I’ve been reading your posts. I hope I’ll be able to help someone in their struggles, encourage & be encouraged by my “Melanoma Buddies” to keep fighting, no matter what!