PET Scan Results & Meeting with Medical Oncologist

We received the initial PET scan results early evening on Christmas Eve through MyChart, which is a portal for patients and providers to keep in contact with each other. Of course, the report was written in doctor speak but some of the words looked kinda scary. Hypermetabolic. Neoplasm. Mediastinal and hilar lymph nodes. Pulmonary nodules. And on and on. Some with measurements and others without.
I knew we wouldn't find out what it meant in terms we could understand until Wednesday afternoon so it weighed heavily on my mind all Christmas Day. What stage is it? Will he need chemo? Has it spread to his lungs? I hardly slept last night. As it got closer to time for the appointment this afternoon, I got more and more anxious.

We met with Dr. Bienvenu this afternoon and finally had some answers and only a couple of unanswered questions at this point. So, here's where we stand for now.

The pulmonary nodules need to be biopsied before they can truly determine a stage. It is definitely confirmed at Stage 3. If the pulmonary nodules are not melanoma, it stays at Stage 3. If they are, then it is Stage 4. Treatment will be determined after the pulmonary biopsy results. There are 2 planned courses of action based on the biopsy.

Plan 1
If the pulmonary biopsy is negative for melanoma, Dad will need to have an additional surgery on his neck to remove more lymph nodes. He will also undergo 5 treatments of radiation targeting his neck. Next will be 1 year of immunotherapy.

Plan 2
If the pulmonary biopsy is positive for melanoma, Dad will still need to have the additional surgery on his neck to remove more lymph nodes. He will not have radiation at all. He will go straight to immunotherapy.


The best news about both plans is that there is NO CHEMO!!!! He said that melanoma has advanced beyond using chemo. Dr. Bienvenu said that approximately 90% of the people who take immunotherapy for melanoma have no side effects at all. Things that are common are rash or a cough, both of which are easily handled with a steroid treatment, or intestinal malfunctions (yeah, I just can't bring myself to type that "D" word, LOL). An extremely rare effect is neurologic damage, which he's only seen once and it wasn't even his patient. When asked if we would have to take Dad to the ER for fevers and which one to use, he said we could expect some degree of fever because that's the immune system fighting the cancer.

For those unfamiliar with immunotherapy, he said that cancer tends to "blind" the immune system into not seeing the cancer is there. Immunotherapy "removes the blinders" so the immune system can see and fight the cancer. And, as most folks are aware, when the immune system fights, it can sometimes cause a fever.

The positives about immunotherapy include: little to no side effects, he'll be able to maintain his current daily activities (including driving for work and involvement with the fire department), there is less risk of illness because his immune system is not being suppressed.

The goal of treatment is curative and not just extending life. He, of course, could not promise that it would definitely cure the melanoma, but did say that they have seen remarkable results with immunotherapy in other melanoma patients, including remission in many. He said that it is a reasonable goal to make the melanoma go away and that immunotherapy is the biggest advancement in cancer treatment ever, bar none.

The biopsy is being scheduled as soon as possible. It may even be able to be done this week, if the approval from the insurance company can be received timely.

Outstanding questions can not be answered until the biopsy is complete. And, there aren't even many of those. What is the definitive stage? What order are we doing treatment? When do we start treatment? All easily answered after the biopsy is done and results reviewed.

Angel