SBRT Missive #2 ....what you might expect!

[trregan]

Hi There!!

Well, I was so happy to reach visit #4/5....making plans to fly to NYC after #5. My doctor and I had a video chat..."How was my pooping coming along?". "How about those night sweats? Would you like some medication? Diarhea? Urinary hesitancy? Dribble? These and more.

After that chat and one with my Covid averse NYC friend, I cancelled my trip. Good thing!

Visit #5 was slightly ceremonial...."Thanks for coming!...See you later, alligator" My exit interview alluded to after effects, which I shined on...well, ok if you say so. I signed off thinking that I might be impervious to any real issues - such is my ego. I felt pretty good, relieved, etc. Time for a nap.

That evening was when the cumulative effects of treatment were felt. My sweats were impressive. My urinary flow was not, although the urge was. My poops were less than impressive, although equally as demanding, frequent and uncharateristic of what to expect from "diarhea".

And true to my RN's warning, the symptoms have progressed for the last 10 days...although they are getting less and also more. Less demands and better poop outcomes. I feel that outcomes were under-reported and under-emphasized by Kaiser. Or, maybe I just didn't know exactly what to expect..which is my point. I found that out when 5 days later, I received a detailed report of my treatment and an accurate description of the aftermath of radiation.

I think they should provide this report earlier than your exit interview...or at least at the exit interview, rather than euphemistically describing the symptoms as simple "diarhea". It wasn't. [I'll post that in missive #3]

Managing the patient information, time frame, preparation and aftermath could, at Kaiser, be a lot more organized and descriptive. That's my 2 cents.

Kudo's to this forum for providing a lot of info and calming me down. I hope this info is useful to everyone. In hindsight, it was tolerable. Glad I wasn't on a plane to NYC, that would have been intolerable to everyone!

T

[Tall_Allen]

Here's the handout I give to patients. My RO approved it.

prostatecancer.news/2018/10...

[trregan in reply to Tall_Allen]

Thank you!

[chrisNYC]

I was treated in NYC, at NYU ("cyberknife" version of sbrt)will confirm that 90% of the discussion and planning focused on the 5 days of treatment, it was only afterward that they discussed the "short term effects"... i finished treatment in april and the short term SEs are now over so it isnt that big a deal but agree that they were worse than i had anticipated or been informed. i had very disagreeable GI tract issues (couldnt go, then couldnt stop. urgency, etc)... i made friends with several guys treating at the same time, they all had SEs, albeit different ones... most felt terrible burning with urination (i did not).. hey, none of these things would have changed my treatment decision but i do feel they were treated as a bit of an afterthought on the "what to expect list"

for me, as i have posted, of greatest concern was developing a mild peyronies condition as a result of the sbrt which can cause trauma to vascular structures. trying to work that out with traction, which is a bit medieval . . .

best of luck!

[trregan in reply to chrisNYC]

Be well!! Thanks.

[BL2023]

How are you doing since missive #2? I’m considering doing Sbrt with Dr. Mohan. Any info you can provide would be appreciated. Enjoy your posts, you have a great attitude.

[trregan in reply to BL2023]

It's one year since I did the procedure.

Here's my status. My psa levels are all low and I continue to take blood tests every 3 months. I still have some urinary issues and continue Flomax...the issues are a sense of urgency and sometimes pain, but no where as demanding as before. Most of the poop issues have subsided!

You could say I'm leading a normal life. My testosterone levels have increased and my libido is on the rise, as is my dick. But of course, not like before. There is some ejaculate, but its not the same at all. I continue to walk a lot and I'm going back to the gym because I am lazy on my own1

Regarding Mohan: I haven't seen him, but he reviews the blood work and sends a note. I have seen Martinez, who I am not sure I enjoy. Both guys are happy with the numbers.

I'm glad to have a chat if you would like. To make the whole thing easier, read post #1 and get Mohan's office to go into detail about the 5 day prep cycle and what you should expect to do. All the best!

[BL2023 in reply to trregan]

Thanks for the info! Keep getting better!