Five Months In: Met today with the... - Prostate Cancer N...

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Five Months In

dadzone43 profile image
17 Replies

Met today with the oncology team. My risk pool was seminal vesicle involvement and positive margins. They again talked about the "significant advantages" of salvage RT + ADT. Propose six months of ADT and 38 RT visits. My current PSA is undetectable. My question was: "define significant advantage" The European study showed longer survival in 21% of the study group. But they admit that there really is not good data on whether or not the control group was really a control group or might have had RT. How long a survival? six days? six weeks? six months? six years? Well we do not know that. The results of the study "published at the end of last year" -- sorry I have no references -- looked even better for the treatment group. So I thank them. I will continue to monitor my PSA. If and when it budges, I will re-think. Oncologists are good people but their only metric is survival with no regard to the price in time/money/ quality of life spent for maybe a teeny gain of a few weeks. To me, the risk/benefit ratio is still lopsided. ADT+RT is not benign treatment.

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dadzone43
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17 Replies
tallguy2 profile image
tallguy2

Even without knowing your Gleason score, you are in a high-risk category with seminal vesicle involvement. Clinical trials have shown that radiation therapy reduces the risk of re-occurrence. The combo of radiation therapy and ADT has been shown to extend lives. You can choose to wait for the first detectable PSA and then do salvage radiation. I understand that genomic tests have been developed to help you and your oncologist understand whether or not waiting is right for you. Clinical trials have also shown that the combo of ADT and external beam radiation therapy benefits men...longer lives.

I didn't have seminal vesicle or lymph node involvement after my RP, but I did have a positive margin on the bladder neck. With a Gleason of 9 I hit it immediately with ADT and radiation. Either way the combo is highly likely to be in your future.

Best wishes!

dadzone43 profile image
dadzone43 in reply totallguy2

If I were an odds-maker I probably would agree. I was G8 in one biopsy core and G7 in the other. Only 2/12 positive. I am 75. So I have to weigh all those factors including any expected slow progression of PCa. It is a complicated calculus.

Harley1948 profile image
Harley1948

I had and still have an undetectable PSA after my RP on Oct 23, 3018. I had a positive margin and 1 EPE. My Gleason is 3+4. I finished 36 sessions of ART about 3 weeks or so ago. I could have waited (active surveillance), but did not want to because I cannot predict the future. Over treatment - maybe. But since I completed ART, I am mentally in a better state. I know that I have done everything up to this point that should be or was recommended to be done. It was not an easy decision for me and I was a “hell no” when I discussed with the RO. After taking some time, reading this board of people’s experiences and some other studies, I decided to go ahead with ART. It is not an easy decision. Also, I read and my RO told me that the earlier ART is started after RP the better the results. I started ART about 3 months after my RP. I really did not have any noticeable side effects from the radiation. I worked everyday and was given the last appt each day for RT. Other fact - I am 59.

Paulo1968 profile image
Paulo1968 in reply toHarley1948

Hi Harley1948,

How long was the positive margin?

My pathology report showed 1 mm positive margin on the apex. All the rest was cleaned. It was T2. My doctor told me that my positive margin is neglectable given the size and based on studies.

I didn't do any other treatment apart RP on April 2018.

Thanks

Harley1948 profile image
Harley1948 in reply toPaulo1968

Hi Paulo, Look at my first post. I provided my pathology report. Let me know if you cannot find it.

Paulo1968 profile image
Paulo1968 in reply toHarley1948

Hi Harley, thanks I saw it now. 15 mm is big and EPE, but you had ART before uPSA started climbing, right?

Harley1948 profile image
Harley1948 in reply toPaulo1968

I only had 1 PSA test before ART and was undetectable. My last one on March 20 was undetectable as well - was still going through ART on March 20. My RO commented that if PSA was increasing, then other actions would be necessary. I will have another PSA test in June. If I recall correctly, the positive margin may have been on the cut line from RP - but cannot remember. Anyway, I did all that was recommended and that is off my conscious. In the end, time will tell - cancer is unpredictable.

dadzone43 profile image
dadzone43 in reply toHarley1948

Yeah. I get it. Risk tolerance plays a big role in these decisions, along with age and general health. I think I can manage RT pretty well but I am, well, put off by the reported side effects of chemical castration -- politely called ADT -- and the blithe way that medical oncologists talk about those side effects. They do not have to live through hot flashes, memory loss, brain fog, melting muscles, bone thinning, boob-growing, lost libido and weight gain. They want to see survival.

Harley1948 profile image
Harley1948 in reply todadzone43

Thankfully, ADT was not recommended. A decision that I did not have to make. RT was a breeze. I certainly understand.

Steve507 profile image
Steve507 in reply todadzone43

Do those effects abate and/or disappear after the hormone treatment is finished?

Steve507 profile image
Steve507 in reply toHarley1948

How bad were the side effects of the ADT?

Jimraz profile image
Jimraz

After nine years, PSA steady at 0.06, no side effects. I had Proton Beam Therapy.

dadzone43 profile image
dadzone43

you are a success story. Yay!

CreativeOne profile image
CreativeOne

I'm in a similar situation and I agree with your assessment. RP in 2015 with cancer present in bladder neck and urethra. pT3bM1N0 Gleason 4+3=7. Yes, treatment can extend overall survival, but for how long, and at what cost?

dadzone43 profile image
dadzone43 in reply toCreativeOne

My opinion: not enough ask that. I have experience with only one oncology team and they are about _survival_. I respect that but it is too narrow a metric.

RonnyBaby profile image
RonnyBaby

I had the ADT / RT combo which started in mid 2017. (T3B /G9/ node positive & PSA @ 300+)

Fortunately, I responded well to treatment. Today, I'm undetectable (about 1 year and ongoing) at >0.02.

Now I watchfully wait to see what's next.

The good news is that my recovery continues. I get stronger and feel better as time progresses.

We wish you improving health moving forward ....

Steve507 profile image
Steve507

I found a reference or two from your posts.

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