My Story

I should say that I'm not a big fan of alternative treatments nor do I feel that any kind of extreme diet could change things much. I eat pretty much like I used to before being diagnosed.

Honestly, I kind of began taking the mushroom supplements to humor my wife and a friend of hers who strongly recommended them. Her friend shared this video:
https://www.youtube.com/watch?v=pXHDoROh2hA
The video is a Ted Talk about a man whose mother had advanced cancer and ate these turkey tail mushrooms and was cured. I don't know if the man somehow profited by it or what agenda he might have had. Would he fake the entire thing? Possibly...?

As for the PSA test, I've used the identical lab for all the tests. I knew not to cycle before the test but a previous urologist said that running (even hard running) and weights wouldn't be a problem so some of the previous tests I had done those activities. I always avoided sex for 48 hours but this time it was 72 hours + and no exercising at all for that time period.

I would think that at a minimum it's indicative that the cancer has not exploded since the January biopsy. I'll be meeting with the first urologist on 8/2/24 and plan to discuss things then. If the PSA had jumped, I was ready to pull the trigger on radiation by the end of summer. I think I'm at least open to having another MRI and biopsy in 6 months. I want to keep my body whole as long as possible and few those procedures as worth it. If the Gleason 4 goes beyond 5% of just one core, then I think that would verify the time for AS is over.

JasonB176 said...
Honestly, I kind of began taking the mushroom supplements to humor my wife and a friend of hers who strongly recommended them

I watched your video. It was interesting. The pictures of people walking around old growth forests looked really calming. Very “entish” for those that read Lord of the Rings.

The medical part, at around 10 minutes and 30 seconds he mentions two drugs his mother was on besides the supplements.

I just wanted to make sure you heard/saw that.

So I just had my video visit with a top radiation oncologist out of Mass General in Boston. She had even more concerns about my compromised rectal area. She went further than the Lahey oncologist who ruled out SBRT and brachytherapy but thought that I'd be okay with a 20 course treatment of IMRT. She recommended against ANY form of radiation. She said I might be okay initially but a few years down the road could be plagued with anal fistulas and abscesses. I'm kind of crushed because I had pretty much settled in my heart that radiation would be my treatment when the time came be it at the end of summer or 6 months or a year from now.

She repeated all the reasons for surgery. She said any follow up radiation I might need would be a lower dose and not threaten the rectal area as much as initial radiation treatment.

I'm wondering at this point if I should reach out to Dr. Scholz at the PCRI. He is such a strong proponent of radiation and I think it's quite likely with all of his experience that he's had patients with compromised rectal areas.

FWIW, she said the drop to 3.8 PSA is meaningless and should have no effect on my decision making process.

Well, back to the beginning. You have successfully narrowed the choices down so check one item off the list. Now to make sure you find a well regarded surgeon who does a lot of prostate surgeries and has good track record. Given your young age, surgery is not a bad option and you should snap back pretty quickly.

I was impressed with your last RO who said “FWIW, she said the drop to 3.8 PSA is meaningless and should have no effect on my decision making process.” Good advice from an experienced doctor.

I outlined in my first post on this thread about the two urologists I saw back in March. One had done about 1000 and the other 2300 prostatectomies. My plan for now will be to have the latter one do my surgery. His name is Dr. Moinzadeh and he practices out of Burlington Lahey in Massachusetts. I've heard anecdotal reports that Mass General has better ratings overall than Lahey but I was very impressed with Dr. Moinzadeh. He was very frank about the dangers of surgery but now I have no choice. He told me to follow up with my local urologist which I still plan to do on 8/2/24. I'll review my situation then and make plans.

Jason, I understand your disappointment but at least you have gotten yourself educated and done a ton of homework so you should be confident in your decision. When the time comes we have a lot of guys here who went the surgical route and will have plenty of helpful pointers to help you successfully negotiate through this.

Best of luck,

Jim

Jason, some more pre-surgery prep ideas:

For the first week or 10 days, you'll have a foley catheter. If possible, plan on living on a single floor and not trying to do stairs with the foley in. If you trip over the tube, it will not end well. With that in mind, some supplies:
1. a small bucket to put the bag in on the floor. This helps to carry the bag around, and will collect any leaks.
2. A package of the 'doggie training pads'--put one on your chair, again to catch leaks or drips. They make chair pads for the same purpose--but the doggie pads are probably cheaper.
3. Plan on wearing workout shorts the whole time you have the catheter in. If it's wintertime in your area when you do it, see if you can find 'basketball sweats' that have snaps running down the legs--again, it makes managing the catheter easier.

Also, get both heavy and shield pads for men. It's not uncommon for you to leak a lot right after the catheter comes out, at least for the first few weeks. It takes a little while to master the art of kegaling automatically when you stand up, for example. It's likely you'll leak, and having the pads is important.

Plan on spending most of your time the first week in a chair. A good comfy recliner is a valuable tool. Make sure you have a table there to put your water mug (use the hospital one to track your water consumption). You should also have your remote and/or a stack of books there.

I recall my routine was to force myself to get up and move around every hour or two. Naps are good things.

Oh, you'll want to push a lot of fiber in your diet. Many people get severely constipated from anesthesia, and if they give you any opiates, either in the hospital or at home afterwards, constipation follows. Take stool softeners. Ask your doc for a scrip for bladder spasms. Some men have them when the foley is in. I never had one, but everyone who has says they're no fun at all.

I borrowed a shower bench as well. Trying to stand up in the shower with the foley in is another tangle challenge.

That's my list for the day....good luck!

Thanks for all the helpful tips. I have a head start on the strong core as I've included abdominal exercises for many years as part of my strength training. I was doing kegels in March when I thought I'd be having surgery soon. I've just restarted doing them now and will try to integrate that as part of my daily routine going forward.

The constipation is my biggest concern with surgery because that is what triggers my ongoing issues with the anal abscesses. I will definitely have to address this with the surgery team.

Post Edited (JasonB176) : 6/17/2024 6:38:54 AM (GMT-8)

If you have constipation then for sure you will want to stay away from radiation. You are suppose to have a BM before each treatment. Linzesss works great.