I've been in the process of getting information needed for my genetic cancer screening panel. After a few tele-health sessions, blood samples were needed for the next step. Since this is being directed by Dana Farber, I had a blood draw today prior to my consultation with Dr. Mehta on my next steps to treating my bladder cancer.
Forgetting the time change and getting darker earlier, I wasn't lucky while headed West to Methuen. Because of the setting sun and my direction, I was caught in traffic due to the solar slow-down. Normally a 15 minute ride turned into a half hour. I arrived five minutes before my appointment and was asked to show my Covid screening pass. I did do my e-check in, but wasn't asked to complete the questionnaire. Of course all the other visits to this facility, no one ever asked to see it or the QR code. Well today they asked and I didn't have it. Already running late, I was asked to complete the survey/questionnaire. It didn't take long, but just another annoyance. I did pass go, but forfeited the $200.
I arrived at the 3rd floor and checked in. I received my bracelet and pager type device that they called a locator. I was given the mandatory SATs, but no writing implement. I asked and got a miniature golf-like pencil. I sat down and completed the paperwork, made the same changes as I did the last time. (Why don't they update?). I was called in for the blood draw.
My vitals were checked, I was weighed then followed the nurse to the blood draw station. She was really good. Very little pain and struck the mother-load on the first try. I told her she should be an instructor. She seemed to take the compliment with a smile. After-which, I was brought to an examination room and told to wait for Dr. Mehta.
It wasn't too long and Dr Mehta arrived. We talked and discussed what had happened since my last BCG treatment, TURBT and some of the discussion he had with Dr Previte. He asked if Dr Previte discussed options for me (at this point). I mentioned 3: 1, another round of BCG (also mentioned the interferon that is no longer offered); 2, going elsewhere; 3, having my bladder removed. I told him that I chose to begin another BCG treatment but get information about other options (immunotherapy).
Dr Mehta said the he agreed that having the bladder removed was a life changing option (although the safest), and stood by my decision to hold off on that. He went on to say there are two other options. The first is an immunotherapy (only administered in Boston [he mentioned Brighams]) and the other inter-venous immunotherapy adminsitered at DFCI (Methuen).
The first option I would need to discuss with the urology team in Boston. He said that it's chemo-like, but it's administered via catheter. He was unsure of the frequency and possible side effects. But he said he would send a referral to them and they would reach out to me for consultation. The second option he referred to a "hail Mary" is administered like chemo. There are side effects which 'could be' inflamation anywhere from top to bottom: brain; thyroid, lungs, intestines, endocrine system. He said that 10% of the patients have this and if it's bad then steroids are administered. He said this, in his opinion, would be the last effort prior to bladder removal.
He did say that I do have some basic requirements for immunotherapy: aggressive cancer; stage one, but I would have to have tumors. According to his conversation with Dr Previte, the tumors were scraped away. But he said to have the consult with the team to get more information.
So the game plan (at this time) is:
- Continue to the next round of BCG
- Meet with urology team in Boston
- At the end of the treatment (BCG) have a cystocopy. (Depending on what Boston team says, either remove the tumors or not- if there)
- Follow-up with Dr Mehta in March
I asked if he and Dr Previte update each other. Dr Mehta said, "We talk a few times a week." On the way out, I asked what to do with my SATs, Dr Mehta said, "I''ll take them". But I get the feeling they go into the shredder.
So I await contact from the Boston team and also from Dr Previte on the schedule for the next round of BCG.
The more you know, the more you don't know.
Post Script: I received an email that I was referred to a specialist from the Partner's/Brigham Network. I have the appointment booked for January 11, 2023 with Dr. Matthew Mossanen in Foxborough. I hope the weather cooperates.
More to come!
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