Prostate cancer what to do. - Prostate Cancer N...

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Prostate cancer what to do.

rennagade03 profile image
14 Replies

I go through the VA system for health care, was diagnosed with PC in April only option at the VA I go to was RP. Ask about radiation treatment urologist really didn't even want to talk about or consider that as an option. I was giving a risk factor of favorable intermediate risk of a 14 core sample all were benign except for left middle three cores PROSTATIC ADENOCARCINOMA, GLEASON SCORE 3+3 = 6 (GRADE GROUP 1),

INVOLVING 10% AND DISCONTINUOUSLY INVOLVING 30% OF TWO OF THREE

CORES

F) PROSTATE, LEFT BASE X3, BIOPSY PROSTATIC ADENOCARCINOMA, GLEASON SCORE 3+4 = 7 WITH 5% OF PATTERN

4 (GRADE GROUP 2), INVOLVING 20% OF ONE OF THREE CORES not sure what all this means as Dr. Did not explain any of this. Other than to recommend surgery. So can someone give in sight to what this means.

14 Replies
Magnus1964 profile image
Magnus1964

What is your age and general health? Any other health issues?

rennagade03 profile image
rennagade03 in reply to Magnus1964

58. General over all health is great.

Magnus1964 profile image
Magnus1964

Unless there is something else, I see no reason why a RP should not be done. It may be the only option to completely remove the cancer. I know it is scary, but to have the chance of being cancer free, it's worth it.

London441 profile image
London441 in reply to Magnus1964

This, as direct advice, is probably the worst I have ever read on this site.

London441 profile image
London441 in reply to London441

I’m sorry for such a strong reaction. Instead I will ask: for someone who never had a RP to say that RP ‘may be the only option to completely remove the cancer’ kind of pushes my button. I have read some great posts from you and you should know better.

It’s not only completely false, it’s a lie that is still given by urologists regularly.

Patients are told what you said by urologists all the time and look no further. They had other equally good options but trusted the doctor.

Side effects of RP should be known in their entirety before even thinking about one. Urologists often either sugarcoat or cherry pick side effects when talking to patients about surgery.

Radiation has continued to improve, has equal efficacy as RP and with a very different and preferable side effect profile.

RP had resulted in permanent negative consequences for me and so many others. I would never get a RP if I had to do it over again. It is my only regret in life.

Tall_Allen profile image
Tall_Allen

That is a pretty good pathology report, as these things go. It means you have plenty of time to make an informed decision. It also means that you are a good candidate for active surveillance, radiation or surgery.

You have a very small amount of pattern 4. The core with the pattern 4 cancer (the only one you should be concerned about) had only 20% cancer in it, and only 5% of that cancer is pattern 4, which is pretty minimal. If you can afford $300 for a second opinion, it's a good idea to have your urologist send your biopsy cores to Jonathan Epstein's lab at Johns Hopkins. They are the gold standard.

pathology.jhu.edu/patient-c...

If he confirms your favorable pathology, and you want to do active surveillance. You should have a special kind of MRI, called a multiparametric MRI within a year. That will be followed by a another biopsy to confirm your favorable results. They will also monitor your PSA twice a year.

If you decide you want to treat it instead, there is no difference in cure rates between surgery and radiation, but the potential side effects are quite a bit worse with surgery. Urologists only know about surgery, so you will have to ask to see a radiation oncologist. There are different kinds of radiation - brachytherapy, IMRT or SBRT. You will have to meet with a specialist in each type to learn more about it.

I had SBRT when I was 57 twelve years ago and was cured. There are no lasting side effects other than loss of ejaculate (which occurs in about 15%). My erectile function is excellent and I pee like a racehorse.

The side effects of nerve-sparing surgery your urologist probably didn't tell you about are permanent incontinence in 20% of men, complete loss of erectile function in 57% of previously potent men and less hard or lasting erections in all, loss of penis size, guaranteed loss of ejaculate, and urination during orgasm.

rennagade03 profile image
rennagade03 in reply to Tall_Allen

I am trying to see Dr. Sean Collins at MedStar. Good, bad, indifferent? What do you think. Also did you have any other types of treatments?

Tall_Allen profile image
Tall_Allen in reply to rennagade03

He is one of the best! We have communicated several times, although we haven't yet met in person. Please give him my regards.

SBRT was the only treatment I had.

ranger69 profile image
ranger69

Talk to the Community Care Office at your local VA. I did that for mine and the VA paid local providers for my treatment, I had no out of pocket expenses and was able to get SBRT radiation (Cyberknife). Surgery is NOT the only option. You have plenty of time to make an informed decision. Don't rush into surgery.

markolcott profile image
markolcott

Tall_Allenn gave you great advice in my opinion. I am on AS. diagnosed with a 3+3 and a 3+4 sample. I was sent to a radiologist. considered different radiation options, Focal laser ablation, etc. Short story, after lots of reading etc, I got a second opinion from Mayo clinic, 3+3 and 3+3, and a 3rd opinion, 3+3 and indeterminate. had a second MRI (15 Monsths after the first), looked different than first. had a second biopsy (12 months after the first), MRI guided this time, negative for cancer. So, I still assume I have the 3+3 in 2 zones but I'm going to monitor carefully for now.

EdinBmore profile image
EdinBmore

Here are my 2 cents: Right on with Tall_Allen's advice. You have time to explore all of your options. Read, watch videos, chat with men here. Many, many sites to guide you. Prostate Cancer Foundation is worth a look.

Good luck to you,

EdinBaltimore

aceace12 profile image
aceace12

A.S. seems to me that would be your best route at this time . good luck

ironmanburg profile image
ironmanburg

Hello, I too receive most of my healthcare from the VA Hospital in Tampa Florida; however, I requested to be sent to a provider in the community for my prostate issues. I have low risk prostate cancer and have been followed by a urologist in the community. I elected to go the active surveillance route and over the last 3 years he has ordered 3 MRI's, completed bx, several office visits with labs, Oncotype testing, Genetic testing, 2nd opinion on the bx from Johns Hopkins all paid thru the VA Community Care program. I would check with the Patient Advocate at the hospital if the Urology department gives you any crap, And I wouldn't be following any of their recommendations until you get 2nd opinion and do a LOT of research. Keep us posted.

rennagade03 profile image
rennagade03

At the Salem VA it's just about impossible to get to see someone outside the VA if they have that service there and patient advocate is a joke. At the Salem VA they have set their own algorithm to what qualifies you to see any outside provider instead of going by the mission act. So just how did you get community care, does Tampa VA not have a urologist?

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