Want some advice on the way forward

I have been lurking here since mid May when my hubby has been dx.

We are living in Hong Kong.

As you can see from my signature, the biopsy looks fine, GS7,with only 1 / 16 pos. T1b .

Therefore,our urologist suggested to do ops to get it out. The MRI is clean.

We have our post ops report today and it is a big shock.

GS9 (5+4), both right and left lobe involved, left seminal vesicle involved. The prostatic carcinoma has also reached the superoposterior cauterized margin above the L n R seminal vesicles. The superoposterior urethral resection margin is also involved.

It is now upgrade to GS9 (5+4), pT3b

The urologist suggested radiation therapy, which will start 6 weeks after the RP. My hubby is very sober and pessimistic. Our kids are young and he is the major bread owner. He wants to live at least 15 years more but now it seems that we should only be expecting 5-7 years.

I have changed his diet since dx. Little red meat, pom juice, lot of vegetables, red and orange pepper. He is an active and fit guy with no other illness.

I have added black garlic and tumeric pill today and hopefully we can have a good post ops PSA reading. I will add Chinese medicine post ops 4 weeks. We do have a lot of good chinese medicine doctors here. We usually adopted both west and east medicine when dealing with cancer.

My questions that I would like to seek advice:-
- the radiation damage - when it surfaces, does it mean leading to other cancer, such as bladder and rectal ?
- any preparation needed for radiation ? food ?
- do you know how long can one live with such conditions ?
- should we go for radiation or do nothing but to enjoy life in the next 5 years ? He does not want to spend the last 3 years in hospital.

Many thanks

First welcome and sorry you have to be here. I'll just address your questions, others in the GS9 category will probably be along to discuss the overall situation. The first and last thing to remember is that each man's disease is his own and each will respond to treatment and side effects as an individual person, so anything said here may or may not apply to your husband. You asked:

- the radiation damage - when it surfaces, does it mean leading to other cancer, such as bladder and rectal ?

Any side effects from radiation can happen up to 2 to 3 years after treatment, and can range from minor tissue damage to major organ damages. I don't think there is much worry about SRT causing other cancers to develop in the same area. Possible? yes, likely? no, very unlikely.

- any preparation needed for radiation ? food ?

Most radiation oncologists in the US will have the patient drink a certain amount of water in some period before each session, maybe 16 oz. water 45 minutes, before, with an empty bowel. This will be discussed when you meet with the rad. onco, if not, ask. Also, many people are being told now to stop all supplements during the course of treatment. I haven't heard of any food restrictions, Just normal healthy eating practices.

- do you know how long can one live with such conditions ?

Each person, as I said , is individual and there's no scale or certainty to predict. There are still several more arrows in the arsenal after failed SRT, so it isn't the end of the road, by any means, if it does fail. We have a bunch of 9's here who are living healthy, symptoms free lives many years after their SRT,.

- should we go for radiation or do nothing but to enjoy life in the next 5 years ? He does not want to spend the last 3 years in hospital.

Going for it or not is a personal decision, but there's nothing huge or severely damaging or life threatening that can happen to a normal course of SRT than would preclude taking it, in my opinion. SRT is just the second in a line of therepies that are available, and should be looked at as such. Just a step on the road. The goal is to keep him healthy, productive and living as long as possible, so at such an early age, there's no reason not to have a planned attack, step by step, to fight his disease. You guys are a long way from the end of options, so put the thought of endings away. Even at the very, very worse, it wouldn't be the last 3 years in the hospital, in any case. Find a good, highly rated and regarded medical oncologist who specializes in prostate cancer, if available or one who deals with cancer everyday. You need an expert who understands the various options to use in combating his disease. A radiation onco, is ok for the radiation work, but I think the patient (general term) still needs a medical oncologist to oversee and carry him past the radiation stage if the SRT fails at some future time. Good luck, hope this has helped some. My opinions are just that and you may hear from others who think differently. That's fine, you need as many different things to consider as you can get. Research, read, educate yourselves to make a knowledgeable decision.

W,

Welcome out of "lurker" status. It sounds like your husband falls into that group where surgery really does tell us something we didn't expect to learn. I'm in that club as well.

James C did a good job in summarizing things. I am a G9 (4+5) guy who did surgery, then adjuvant IGRT.

Some elaboration on my experience -

I don't know what to expect as to long term side effects. I am just at 2 years out from RT, and have a couple that are RT-related. First, I have radiation cystitis, which is basically burns in the urethra that will not heal. It is annoying and sometimes scary to pass blood clots, but does not change any urinary issues beyond what I had from surgery. Second, I was already afflicted with some colo-rectal issues due to past surgeries. The RT irritated the scar tissue, and I have an increased bowel frequency as a result.

I still have some fatigue, but it is manageable.

Would I chose the same route again based on what I know now? Yes. What studies I have seen since (I was not on HW before treatment) expect my situation to be improved by the immediate RT.

I have a currently rising PSA, so there is still cancer out there, but I prefer to believe that there is less now than there was before.

I would have started the RT daily water routine earlier so that my bladder would have some time to get used to it.

How long will I live? Who knows. My GP has me getting a lot of exercise. He says that if I want a chance to die of PCa, I need to be sure and not die of a heart attack first.

Diet during RT - my RO simply said keep doing things the same - nothing extra or exotic (food or drink) from Sunday night to Friday morning. Keeping the diet the same supposedly helps my bowels stay on a predictable track.

Meds & supplements - they asked about everything, prescribed or not, even eye drops, skin creams, and over the counter meds. They took me off of supplements, and I did have to adjust some medication.

For the day to day, there is a link in my signature to my RT journey thread.

And to restate - each of us has a unique path, and we are not doctors, so we can only tell our story.

Welcome again

Hi WinnieHK,

You can see my stats below. I am G9, t3b, high PSA at diagnosis. I think you are being way too pesimistic on survival.Don't even speculate on trying to put a number on that. However, aggressive treatment is in order. As a point of reference, you can see my treatment journey in my signature. Good luck and ask plenty of questions!