What proceedure did you choose or are considering
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
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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...
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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
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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.
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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?
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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?
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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
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I agree with @Clevelandguy . The risk is that PCa cells were left behind.
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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
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Hi Paul and I agree with the above comments.
I am 68 and had my prostate removed (DaVinci) in early July. My physician prescribed 1/2 viagra immediately following surgery to increase blood flow in the area. Standard catheterization post surgery and then the diapers and pads. As I'm now closing in on my 3rd month post surgery and the incontinence is all but resolved. I still wear a protective pad in my normal underwear but that's more for my confidence than actual need. The occasional drip comes through if I don't Keegle as I stand but no real issues. First PSA test last month was a non-detect (<0.1) and I'll test again in the next week for my three month follow-up. I exercise without any real issues. Had some discomfort in the region around my bladder if I didn't sleep on my back for the first few weeks but that's fairly well resolved itself and I can return to sleeping on my side with not real issues. Erections aren't as they we but the viagra does help. The point of all this is that there is life on the other side of surgery and it's pretty good. I'm forever grateful for my surgeon and continue to believe it was the right choice for my circumstance. While I initially considered radiation, I changed my mind upon learning that initial radiation moved any future surgery into a salvage operation with far less effectiveness. I'm grateful that I still have the radiological option available should the cancer return but my wife and I have concluded that hormone therapy is off the table for us as I already suffer from anxiety and PTSD. I hope all this helps but feel free to fire back with any questions you may have. Like you've probably already heard from the previous responses, you're far from being alone.
Best,
Ron B
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I did 35 IMRT sessions totaling 68 grays of radiation several years ago, and I was able to secure an 8:00AM appointment every morning, so that it had the least impact to my daily work routine. It appears that you got through it, so from here on out, it is just one day at a time, so make the best of them.
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hopefully you had genetic testing done ..if the cancer is of low grade you made the right choice is 69 years old and he had about the same diagnosis as you went through radiation and he went through it fine with virtually no side effects whatsoever and his PSA is now dropping that it will take about two years to three to drop to its lowest point, but I think you did choice
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Hey Paul, I am 51 and both the urologist and oncologist wanted to put me on hormone treatment. My PSA is 3.47 and highest two years ago was 5.78. Gleason score is 7. They did a decipher on my biopsy and said I was high risk and aggressive cancer. I was leading more towards the radiation therapy. But i am really on the fence for this ADT. I also suffer from PTSD as well and in 2012 it was at it worst and it has taken years for me to get where I am now and without medication. All of this is so overwhelming because once we choose we can't go back. Thanks for sharing.
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I am pretty much the same situation as you. I am 59, MRI PiRAD 5, Gleason Score of 7 or 8 (two pathologists disagreed) I was diagnosed in September. I had a PSMA PET scan that indicates no metastasis, I have discussed with 2 surgeons and 2 radiation oncologists. The surgeons both disagree and the radiation oncologists both disagree with the way forward. In discussing with my wife, I have decided on RP laproscopy with DaVinci. The surgery is schedule for 10/30. Honestly, it looked like the best way forward for me. It took me a month and a half to find urologists that I had confidence in. It is worth you while to find a urologist you are comfortable with. The internet has a lot of great resources (some crappy ones also). Stay with respected sources. Ask questions of the urologist and oncologist.
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Congratulations on your decision and my best wishes for a swift and full recovery. While we're all different, at 68, I had that same procedure in early July and life has largely returned to normal not that I'm three months out. The incontinence has all but completely resolved itself even though I continue to wear an absorbent liner more for my confidence than actual need. Your comments on finding the right urologist and oncologist resonated as I had a similar experience with my diagnostic urologist advising that I wasn't a good candidate for surgery and that he didn't recommend radiation therapy first as it would eliminate the possibility for an effective surgery later on. I traveled to UC Irvine and got what I believe is the best care (physically, psychologically and emotionally) that I could have hoped for. I've now had two ND PSA tests (<0.1) and I'll follow-up with my surgeon later this week. I had six incisions for the DaVinci and I already have a hard time finding them all.
I hope this helps ease any concerns you may have but feel free to ask any questions as you get closer to your surgery date. All my best wishes. Ron B
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I researched everything. I was 3+3 and 3+4 with tumors that didn't show up on MRI (caught it very early with a biopsy).
I found the treatment comparison charts on this website to be really helpful for me in making a final decision
https://www.prostatecancerfree.org/compare-prostate-cancer-treatments/
I opted for LDR brachytherapy by Dr Steven J. Frank at MD Anderson in Houston. My insurance covered it, my tumors were too small for some of the boutique treatments like TULSA, etc to work and I didn't qualify for any of the studies. I believe my total treatment out of pocket has been around $3000 (plus travel costs) which was my personal out of pocket max under my insurance plan.
It's only been 3 months since treatment so things will likely get even better over time.
My side effects have been:
. Perineum area was a bit sore for a week or so, but not as bad as I expected
. Fatigue and weakness have lasted longer than I expected. Getting less now that I've been exercising regularly
. Light headedness when stooping down then getting back up
. Urinary urgency. Doing totally fine then suddenly my bladder is screaming for everyone to clear the way so I can get to the toilet. That has almost completely gone away now.
. Getting up between 1-4 times per night to urinate. That has improved to only once per night lately. I noticed when I don't drink soda I get up less and the urgency is much less. When I drink soda again, they both seem to come back.
. I rarely have any incontinence at all. If I do it's because I waited too long to head for the bathroom. I wore Depends briefs for a month or so after treatment just in case, but no longer do
. Erections are not quite as hard. But are sufficient. At rare times it's more difficult to get one at all. It's mostly normal
. Lower libido
. Climaxing feels a bit different and are mostly dry ejaculations
. Very intimate patdowns at airport security when they pick up radiation issuing from my crotch. And they've caught it every time so far. That should stop as the half life of the "seeds" diminishes.
I found that the Airbnb accommodations around MD Anderson in Houston were fine, but I wanted something better and I wanted something with a separate bedroom and full kitchen so after my treatment, my wife and I rented and furnished an apartment that is 10 minutes away in a very nice area of Houston (Bellaire).
We rent it out now that we're rarely in Houston anymore.
We wanted to provide a nicer housing option for other folks coming to town for treatment for the same price or less than a hotel room. It's one way of helping people have just a little better experience during a really hard time.
I'm happy to answer questions about my treatment and experience since then. I still work full time so am not always available to monitor here.
If anyone has questions about my experience or wants to see the apartment you can reach me through https://deylight-wellness.lodgify.com
Best of luck to you!
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I have also experienced a couple other things.
. Little twinges of feeling anywhere between my anus up through the tip of my penis. Sometimes I would describe them as mildly painful. Most times as just a sensation almost like a mild electrical pulse that is there and gone.
. weaker urine stream and sometimes my bladder not fully emptying at first. But after a minute or two the rest empties out.
Overall. I feel like the side effects of my LDR Brachytherapy treatment have been very minor. I would recommend it for anyone who is a good candidate for it.
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