What proceedure did you choose or are considering

PaulCalif
PaulCalif Member Posts: 7 Member
edited February 1 in Prostate Cancer #1

Like everyone else at my point in this journey, I'm trying to learn as much as I can about the various proceedures available to treat my prostate cancer. I want the "trifecta", and more. No incontinence, sexual capability intact, good stream and of course the cancer gone. I know this may be unrealistic but I'm pretty sure we're all hoping for the best outcome with the least amount of adverse side effects.

I'm 68, diabetic under good control. 3+3 2 biopsy sites, 3+4 in 3 biopsy sites. 5 out of 12 sites positive. I'm scheduled for a PSMA PetScan/CT in about 3 weeks.

I've been reading: Dr. Patrick Walsh's "Guide to surviving prostate cancer"

And reading a lot online.

I'm curious to know what proceedure you chose or are seriously considering and why.

Do you have regrets. If you had it to do over, would you choose the same path or go a different direction?

I haven't decided yet, but still have time. I did listen to a presentation where the physician said there are no bad choices. Our cancers are all unique.

One thing that doesn't seem to come up much, are financial considerations. I don't have a lot of money, but I do have equity and a little in savings. I could pay for a $30k proceedure, but it would be tough. I've read that the Tulsa proceedure runs about $32k and that was a few years ago.

So that's another question for those of you on a medicare advantage plan. Was your proceedure covered? Were there options that were not covered, such as BioProtect.

I think everyone on here that hasn't made a decision yet could profit from your story.

Looking forward to hearing your's

Comments

  • Oldernow
    Oldernow Member Posts: 24 Member

    Hi Paul -

    I am 76 and last year I had radiation along with ADT (3 six month Lupron injections). My PSA dropped to <.03 from a high of 20. No incontinence issues - actually peeing better than I have in m any years.

    My Medicare Advantage plan covered all my work-ups to the 28 days of radiation, the radiation itself and all bloodwork and follow-up visits. I had a PSMA PET scan, CT scans and IMRT Radiation. While I maxed out my out of pocket expense for the year ($3700) thankfully Medicare covered over $250,000. I have no idea how anyone without insurance can pay for the excellent treatment I had. The charges for the scans and the radiation are outrageous but, so far it looks like my cancer is under control.

    I am currently dealing with my first troubling side effect. I have developed chronic radiation proctitis - blood and mucus in the stool. I am scheduled for a colonoscopy on Thurs to check out how badly the radiation has affected my gut. It may be self limiting or treatable but if I have managed to kick cancer's butt, I can live with the side effects - with no regrets.

    Good luck on your journey...

  • Clevelandguy
    Clevelandguy Member Posts: 941 Member

    Hi,

    I had robotic removal of my Prostate back in 2014 and do not regret it. Ten yrs. later I am still in remission, minor ED(member useable) and I drip a drop now and then with heavy lifting or weird movements so I wear a light pad daily. Side effects like mine can happen with either surgery or radiation in varying degrees depending on a lot of things like cancer location inside of the Prostate, good doctor team competence and facilities. I have know very few people who comment on this forum that have no side effects, some have more, some have less, there are no guarantees. The best doctors +the best facilities =the best results. The results of your PET scan should help you decide which treatment is best based on cancer location and if there are any areas that have metastasized. I have no idea on the cost as I had medical insurance but I doubt if its low cost. Maybe your doctor team can give you suggestions on seeking financial aid. Good luck.

    Dave 3+4

  • PaulCalif
    PaulCalif Member Posts: 7 Member

    Thanks guys, these are the kinds of responses I'm looking for.

    I'm assuming I'll be given a choice of surgery or radiation. Hoping my PetScan doesn't show it's metastasized.

  • lighterwood67
    lighterwood67 Member Posts: 374 Member

    Gleason 4+3=7; Robot Assisted RP March 2018; PSA undetectable; continent; intimate with wife. The reason I went with the surgery, I felt that the radiation treatment would impact my Quality of Life for a longer period of time than the surgery. For right now, based on the results of the surgery and my surgical post op biopsy report I would stick with the surgery. To me, if you choose surgery, as I did, in my case the prostate gland, seminal vesicles, internal urinary sphincter, 8 lymph nodes were removed or dissected. These decisions always come down to you. Based on what you think is best for you. Best of luck on your journey.

  • swl1956
    swl1956 Member Posts: 42 Member

    Hello Paul

    I was diagnosed in November at 67 with Gleason 4+3, GG3 Intermediate unfavorable. Like you, I too am needing to make a decision which I am really struggling with. I think quality of life is important to all of us and the choices all kinda suck. One Doctor at Fox Chase thinks I may be a good candidate for IRE Nanoknife Focal Therapy. Evidently, if your in the medium risk group and have a tumor that is located in an accessible spot, Focal Therapies like TulsaPro and others can work having likely less side effects than RP or RT. The IRE Nanoknife uses electricity to kill the cancer. From everything I've read, it has little to no side effects. It still is considered experimental, but is available at several prestigious institutions such as MSKCC, John's Hopkins, Fox Chase, and others. Just that fact tells me there's validity to this technology. I think with all the available Focal Therapies that treat only part of the prostate gland, there is a 10-15% higher chance of recurrence with low to med grade cancers. BUT, what I like about Nanoknife is it's claim to be less damaging to surrounding structures than any of the other therapies. You may be able to have it more than once if needed, and still have the options of RP or RT. I have no idea yet if insurance will pay for it, but am seriously considering going this route to start my Stinking Journey. I think the worst thing for me is the indecision. Once we make the choice and take the first step I'm hoping to get some stress relief?

  • kuching
    kuching Member Posts: 7 Member

    Post RALP pT3b N0.Gleason 5+4=9 in April 2023. no incontinence after a few days. Able to have flaccid sex with Cialis 20mg daily. Worried though about PSA going from .014 to .2 in three months. How does this happen..? There is no prostate, so why are the numbers increasing?

  • Clevelandguy
    Clevelandguy Member Posts: 941 Member

    Hi kuching,

    Sounds like you still have Prostate cancer cells somewhere in your body. I would suggest getting with your doctor team(Urologist and Oncologist) to see what is going on. A PMSA PET scan should be able to find the metastatic cancer. Might want to start a new thread so as not to confound this one.

    Dave 3+4

  • centralPA
    centralPA Member Posts: 207 Member

    I agree with @Clevelandguy . The risk is that PCa cells were left behind.

  • Old Salt
    Old Salt Member Posts: 1,258 Member

    Yes to the above comments. Especially considering your Gleason 9 case.

    Locally advanced prostate cancer with pathological seminal vesicle invasion (pT3b) is a very high-risk disease associated with worse outcome and is considered difficult to cure by radical prostatectomy alone. However, the ideal protocol for additional therapy (adjuvant or salvage) is still debated