mr. Smith

[Laguy01]

just got diagnosed with prostate cancer with gleson scale of 8. I have had CAT scan and bone scan, they came back good. My urologist is suggesting surgery or possibly surgery, radiation and hormone therapy. The radiologist says proton or IMTR radiation plus hormone treatment. I have appointment to talk to surgeon tomorrow. I am trying to decide on what option is best. I am going to talk to a surgeon tomorrow about doing a MRI and PSMA scan. Anybody got experiences or info on this.

[Tall_Allen]

You have time. Talk to several radiation oncologists and urologists.

prostatecancer.news/2016/08...

[Laguy01 in reply to Tall_Allen]

i have spoken to multiple Doctors, urologist, radiologist, and talk to the surgeon tomorrow. My concerns are erecting issues and inconsonance. I am 58 years old and fairly good shape. I do worry about the inconsonance more. I am trying to figure out what has better odds for not having to deal with inconsonance, radiation or surgery.

[Tall_Allen in reply to Laguy01]

That's easy. Permanent incontinence troubles about 20% of men having a prostatectomy, and 2% of men having primary radiation:

prostatecancer.news/2020/02...

[Laguy01 in reply to Tall_Allen]

What about long term survival rates between the two?

[NYC_talker in reply to Laguy01]

Long-term studies now show equal or better outcomes with radiation vs. surgery. But Tall_Allen will give you more info I'm sure.

[Tall_Allen in reply to Laguy01]

The same for low/intermediate risk men who were almost entirely recruited in the ProtecT trial. See Section 1 in link above.

For high risk men, like yourself, radiation has better results. You can put your data into the nomogram below to see your expected outcome for surgery:

mskcc.org/nomograms/prostat...

[NanoMRI in reply to Laguy01]

So much depends on invasiveness of cancer and urinary fitness prior to treatment, whether treatment be RP or RT. I know many men with no unmanageable issues post RP. Most interestingly, not one of us has been followed in any research database.

[Xavier10]

These days radiation is so precise there is a lot of movement towards it. the good thing about surgery is they can analyze the tissue they remove more precisely. But it doesn't change the outcome. And PSA levels have traditionally been excellent markers.

Tall_Allen has a good repository of info on the comparison. You can browse the different articles. Here's just one example of a comparison between radiation and surgery from 2016 and if anything radiation just gets better every year:

prostatecancer.news/search/...

You can read a proton radiation cancer doctor's substack and see how he approaches high risk (which I think Gleason 8 is just getting into high risk) and the success rates:

protons101.substack.com/p/h...

Some would suggest a Pylarify or PSMA scan. Basically the same thing and can tell you better than a CAT scan or bone scan whether there is any spread to pelvic area, which you would want to know, while it is still curable. We are just now in the phase where these scans are often given up front to let us know whether pelvic radiation should be used or is unnecessary. Some Doctors feel comfortable relying on traditional scans - MRIs and CT scans. If it was me, I would want the new PSMA scan. or Pylarify either one.

[Laguy01 in reply to Xavier10]

thank you for your reply. I go tomorrow for consult with surgeon. I had a consult with radiologist yesterday. I am going to request A PSMA scan and MRI tomorrow. I am leaning toward radiation and hormone treatment. Big Decision to make.

[Xavier10 in reply to Laguy01]

One thing I would want to know is if surgery can, in any way, transmit the cancer via the equipment used, to other parts of the body. It always bothered me a little to watch a Dr. Kwon video where he said their scan found cancer in someone's belly button, which just happened to be where they entered the body for whatever type of surgery it was they were doing. It is very rare though.

[NanoMRI]

I was diagnosed at 57, nearly ten years ago. Based on my experiences with multiple treatments, use all available investigative methods before treatment decision.

Multi-parametric MRI was crucial to my treatment decision/selection and I would not accept any treatment suggestions from a doctor that has Not reviewed (and understands) the mpMRI findings. Genomic testing of biopsy tissue was very useful, I had the Oncotype DX test from Genomic Health; today you have additional options. I found second opinions of mpMRI findings and biopsy pathology crucial as well.

Neither PSMA imaging nor liquid blood biopsy were available at the time of my diagnosis - today I would push (may have to push hard) for both. I would hold off on additional treatment consultations until I had all investigative results.

Since my diagnosis I have strived to, if it comes to it, defer ADT and likely CR for as long as possible. Based on mpMRI findings surgery was my best choice.

Being young and otherwise healthy and fit, and with no cancer in critical urinary bits, my post RP continence was excellent and remains so. And my sexual function post RP recovery was more than adequate. RP also offers earliest and best PSA testing means for remaining cancer.

I did have to have salvage RT and that left me with several side-effects and it did not get all the cancer either; mine had spread further than we had hoped.

Hope this helps. All the best!

[Justfor_]

NanoMRI's experience and advice should be taken very seriously. Only thing I can add is to not buy into any "cure" promises. There isn't any "cure", only shorter or longer remissions. You are relatively young for PCa and you will have to hedge treatments for the rest of your life.

[janebob99]

I decided against surgery because of the high risk of sexual side effects. Urologists are biased towards doing surgery. And, surgery doesn't always get it all, so then you have to do salvage radiation and hormone treatment.

For the first 6 months, I took Dutasteride to delay progression of the cancer. Now, I'm doing short-course SBRT radiation therapy + 6 months of Orgovyx ADT. To treat the side effects of ADT I'm also doing transdermal estrogen therapy.

Take your time and make an informed decision. No need to panic. Watch YouTube lectures from famous docs, like Amar Kishan from UCLA.

[conbio]

Lots of good videos here on treatment options according to diagnosis: youtube.com/thepcri

[Laguy01 in reply to conbio]

Thank you

[j-o-h-n]

You have time, so here my three words of wisdom for you: INVESTIGATE, INVESTIGATE, INVESTIGATE.

Good Luck, Good Health and Good Humor.

j-o-h-n

[fast_eddie]

Don't let them rush you into invasive surgery. After TURP surgery 10 years prior to diagnosis they said I wasn't a good candidate for prostatectomy which was welcome news. I didn't want to risk the quality of life side effects that could go with that. I was steered towards external beam radiation. I had a problem with that for maybe a silly reason. This protocol requires a very full bladder. My bladder had been beat up from years of BPH and a couple of retention episodes. I wasn't sure I could follow the protocol and drink a quart of water prior to the 35 or more radiation treatments required. I learned about HIFU and went that route. Having had TURP made me a good candidate. One treatment only required. Almost eight years later I am doing fine. Everything still works. I did have to go out of state and pay out of pocket. Insurance may cover it now. Check it out anyway. I was 66 when I had that surgery. I am 74 now. I received that out-patient surgery in San Francisco.

[Neathuh1]

Keep the faith, Bro. I had Gleason 8 12 years ago. Have had surgery, radiation and on-going treatments including Pluvicto as I have mets in my lungs. Sure I have side effects but I wake up everyday feeling blessed to still be here. No matter what treatments you choose, exercise and keep a positive outlook. God be with you!