Hello, I'm new to this forum. I have 3+4=7. Going through this with doctors it seems that I have multiple options to choose from. This all seems well and good but the decision making is hard. I see it as having 4 ways to go. I'm likely ruling out prostatectomy and radiation leaving Cryotherapy and HIFU (High-Intensity Ultrasound). HIFU would be my first choice automatically but the out of pocket expence is something I need to weigh.
Does any one have experience with these two procedures? Has anyone had conversations with insurance companies in getting them on board a procedure?
Thank you!
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Jonathank7
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I understand your reluctance for surgery or radiation but how will your doctor guarantee he got all your cancer with HIFU?
My husband had 3+4 Gleason, just like you. He had a 3T MRI prior to surgery that showed his cancer was contained, yet once he was opened up, his cancer had spread beyond the prostate capsule.
Do your diligence and ask the questions. No one wants side effects but no one also wants cancer left behind that will eventually spread. You need to ask your doctor what Plan B might be if your cancer re-occurs. I guess it also depends on your age.
I’m 55 also MRI showed Pirads 5 with a large spot/tumor and biopsy several 3+4 also several 3+3. I met with Surgeons and RO’s over the last 4-5 months and finally decided on SBRT/Cyberknife at UCSF. Surgeons just couldn’t make their case that they would get it all, they just kept saying it was the best way to go. It felt like they knew the chances were high it would recur but they kept preaching what they know. In the end maybe the decision is the wrong one but I chose it.
I had HIFU. Four (4) times. I may hold the world record. Also the world record for futility, and possibly insanity, if insanity is trying something that doesn't work over and over and over again. Two in Germany, two in France - out of pocket about $20K including travel. Obviously it didn't work if killing all the cancer was the goal (and it was). It may have kept it from spreading outside the capsule, but that's about all. I did maintain 95% continence and somewhat less potency - after 4 times I'm a little surprised anything works at all. I'm not sure how good radiation was when I started HIFU (2008), and surgeons I talked with about prostatectomy were off-putting in the extreme (arrogant assholes, really, like "forget nerve sparing and erections and continence."). If I'd known about this site back then (if it even existed) I probably wouldn't have done HIFU more than once at most. I don't recommend it.
I have one friend who had HIFU performed in Puerto Rico before it was approved in The States. It was an American doctor who would make arrangements with about 25 men each time he went down there. He ended up with an infection that took months to clear up. His current PSA is somewhere around 3.00.
My husband had HIFU in April of 2019. His PSA went from more than 12 down to 0.19 following the procedure. He would not be expected to have undetectable PSA since he still has more than half his prostate left. He has retained continence and potency. He had two very small tumors in one lobe - one 4+3 and one very small 4+4. We could not afford the $25,000 it would cost in this country so we went to Germany where the doctor was a pioneer in HIFU and has been treating prostate cancer patients with HIFU for more than 25 years. The procedure cost $6,000. It took 46 minutes to zap out the tumors with no cutting. Four doctors in this country told him not to have HIFU, that it is experimental (it was only allowed for the first time in this country in 2015 which is why it is still considered experimental since the US will not consider data from outside the USA.) There are others you may speak with who successfully had HIFU. One lives in Chicago and he had HIFU with the same doctor my husband had and he has no recurrence in more than 13 years. With a Gleason score of only 3+4, you have time to really research what you want to do. And you could opt for a doctor with 25 years of experience in HIFU but Americans are not allowed into Europe right now because of our very poor Covid19 track record and you might have to wait a while until Americans are allowed back in. I know of a Canadian in Toronto who had the procedure in December and a Texan guy who had it done the first week in March before the borders closed - all with the same doctor. It can work successfully for some, but a lot depends on the grade of cancer, amount of cancer and location of the tumors. I would email my records to the doctor and ask his opinion. It costs nothing and Dr T speaks and writes excellent English. He answers emails right away. Best of luck to you and I hope you give yourself the time to really research all your options. vimeo.com/333384968
One can travel to Germany now even with the restrictions. There is an exemption for "life saving medical treatment" and up to two "helpers" are allowed to travel as well.
Ask each procedure practitioner for their stats re: number of procedures done, number of patients experiencing no recurrence, and what would they recommend for Plan B if Plan A "doesn't get it all." You might also review yananow.org - search for men with similar numbers incl. age to you and see what they chose to do. May give you a new perspective on treatments they chose.
At 55, I think you need to be pretty aggressive. Three years ago I was diagnosed at age 61 with Gleason 7. I had robotic radical prostatectomy, which showed Gleason 9 with extension on one side into the seminal vesicles. They were unable to preserve the nerves on that side, but preserved them on the other side. Because of the extension, I had radiation and then androgen deprivation therapy (Eligard and Casodex) for 18 months. I finished the meds about a year ago. I feel fine, although I still get some hot flashes from the androgen deprivation therapy, but they are liveable. My PSA is still undetectable. Sexual function: the androgen deprivation therapy pretty much wiped out both function and libido, but it has returned. Erections are now quite firm, although the glans (tip) doesn't erect much, and the erected length is a bit shorter. I am able to have sex, however. Of course, no semen. So, in general, I have weathered the storm so far, with fair return to "normal." Both my father-in-law and a best friend have died from prostate cancer, the best friend having started at about age 56. He had Proton beam treatment, but ultimately succumbed at age 66. So, I wouldn't fool around with possible unproven treatments. Your life may depend on it. Go to good experts and take their advice. I went to the James at Ohio State University and did what they recommended.
I am 1 month shy of four years post HIFU surgery. My HIFU surgeon is based in Santa Rosa, CA and the surgery was done at an outpatient operating clinic on Sutter St in San Francisco. I had to go out of pocket. My surgeon pushed me toward full gland ablation as opposed to focal ablation. That made sense as it promised a thorough attack on any small tumor activity not turned up by the biopsy. I was positive in 5 cores, only on the right side. I had prior TURP surgery which is not good for RP surgery but is favorable for HIFU surgery. My PSA has crept up from undetectable and has stabilized at 0.5. My PSA at time of biopsy was 2.7. I've suffered no quality of life consequences like ED or incontinence. I am pleased with the results of my HIFU treatment. I would not consider cryosurgery -- it is a blunt instrument as opposed to HIFU. HIFU is focused and accurate with real-time feedback as to location of tissue being ablated and even the temperature that tissue is reaching. Do select a practitioner with plenty of experience if you go this route. I did have a 6 month eligard (ADT) injection prior to HIFU, while I was still on the path towards the radiation treatment they recommended. That helped shrink the prostate and was goodness. Reading accounts of problems associated with radiation treatment influenced me to choose HIFU instead. I wish I had received a 1 or 3 month eligard shot instead of that 6 month shot. ADT causes its own problems.
I am now 25-months post Robot Assisted Laproscopic surgery. I am 73-years old and have almost NO side effects / after effects from the surgery. I play very serious and competitive pickleball (4.0 if it means anything to you) with much younger folks for 3-hours / day 6-days a week. I ride my street bicycle very long distances and high work levels (average heart rate > 130 for 2 or 3 hours with no stops) and single hand a 40-foot sailboat in all conditions.
I suffer only minor urinary leakage when engaged in strenuous activity, which is easily contained with a small pad. I do not even wear a pad unless exercising hard. My erections are not as rock hard as before surgery but quite adequate for intercourse and wifely pleasure.
I was 100% recovered from the surgery in less than 10-months and back to hard bicycle riding in just 4-months.
I chose surgery because of the many reports of the surgeon finding things were entirely different when seen close up with a good bright light.
1) Prostate was twice the size shown by the 12-core image guided biopsy and twice the size shown by the 3T mpMRI.
2) Tumor was 20 (yes TWENTY) times the size shown by the MRI
3) Extraprostetic extension was found despite the radiologist (who specializes in prostate cancer) who read the MRI reporting there was no capsular wall penetration
4) Tumor was in both lobes rather than a very small tumor in one lobe as predicted by the MRI and confirmed by the biopsy
In summary - I am living a life, 2-years post surgery, that has NO evidence of my ever having had a prostatectomy and my pathology was far different than shown by digital exam, MRI, or biopsy.
I could never live with the uncertainty caused by the surgeon not being able to see and touch the prostate and associated glands and vessels.
Hi, Jonathank7. Now that HIFU has been allowed by the FDA for nearly five years, the Journal of Urology in the USA has just reported on one of the first studies of HIFU results in this country. Here is a link to the story, which appears in the October 2020 edition: auajournals.org/doi/10.1097...
It has been allowed for 5 years but I dont think it has been a covered procedure . The FDA has issued CPT codes for this procedure now as of 1/1/21 and it should be covered by a lot more health plans now .
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Currently the use of focal treatment in carefully selected patients is at the top of Urology seminars regarding prostate cancer. Here’s a recent article from MSKCC on the subject:
It is definitely worth a consultation with some experts in the various modalities. Professor Mark Emberton is a good source in London and Dr, Steven Scionti in Sarasota Florida has performed thousands HIFU procedures.
In the end it’s your specific situation that determines what’s best but HIFU and IRE appear to be great options for those who’s cases fit.
If you are willing to do the follow checks and treat the disease like it’s chronic but manageable like diabetes then this approach could be a good incremental first step. Also it does not preclude you from doing more down the road if needed.
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