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PSA rising, 9 years after RP

CuriousCanuck
Posts: 3
Joined: Jan 2012

I've put my full story here as a 'story' under 'Expressions':
http://csn.cancer.org/node/233532
Please respond here or privately if there's more info I can add.

Curious what the thoughts are about how urgent it is to start IHT, and links to men's experience of side effects from IHT.

Links to previous postings are welcome.

I have an appointment with a radiologist at the local cancer centre Feb 7.

VascodaGama's picture
VascodaGama
Posts: 1568
Joined: Nov 2010

Curious

Thanks for posting your well described story since 2000. I am a survivor from those times and was similarly 50 years old at my open surgery (RP). Our stories living with the cancer have similar length but with different “directions”. I got recurrence at the initial six month post op and you got it 9 years later.
There is no doubt that both cases serve as examples for the many guys that visit this forum looking for answers to their problems.

I may have been one of the patients used in the statics of the study you indicate in your blog because I was a patient of the same team of doctors at JH at the time and were recommended to follow Watchful Waiting (now re-named AS but with lesser regimens).

A big difference in our cases in “Recurrence” status is that my cancer was doubling at 14 months while yours was at 9 months. I was also a Gs5 against yours Gs7, which difference may justify the two PSADT in regards to aggressiveness.

With those parameters at hand and with the results from the studies you indicate, I may be cynic in opinioning that a PSADT of 9 months is at the border line which may require you to start a salvage treatment now instead of waiting for the 2 years.
Hormonal treatment may be a good solution to your case. Radiation can be part of your salvage protocol too in combination with HT or you can follow a palliative way of control which as you comment can last over 15 years in an Intermittent approach.

As a layman on PCa matters with no medical enrolment, I would suggest you to take this post as reference and that you follow your instinct after considering several second opinions from professionals.

I see your urologist’s comment below, to be right.
“... it's unlikely cancer is localised so SRT would not work - the cancer is more likely circulating and could be anywhere” (far places).
In my case, my urologist said the contrary, after receiving the results from SRT. He commented that my case was "Localized" because the RT has hit the cancer fully (almost all) as seen in the drop in PSA that went down from 3.8 before RT to 0.05, 15 months after RT. My view in both cases is that our different pathological conclusions after RP, (you with negative margins and negative extra capsular extensions against my positive margins and capsular extensions) drove the conclusions of the urologists. (Far Places, against, Localized)

In any case, one should recall that a SRT protocol can include a wider radiation field therefore reaching the “far” areas where cancer usually travels when metastasizes. These are the lymph nodes at the iliac and bone.
Only after “spending” all presently available sources of investigation in locating the cancer, can one say that the cancer is systemic and has created colonies on far places such as the lungs, liver or kidneys. By experience, the first “stops” in its travel are the iliac lymph nodes and bone. This may even classify the case as oligometastatic prostate cancer which is regarded at a phase of spread before becoming systemic, and therefore with a possibility of cure by radiation.

To such extent, two major tests are now available done with higher resolution machines, but probably not covered by your medical insurance. One is the Na 18F PET Bone Scan that will rule any metastases at bone and the other is the Feraheme USPIO MRI scan which can rule any metastases at the lymph nodes.

All treatments for prostate cancer have risks and cause side effects. These should be part of the decisions and it should be discussed with the doctors with regards to what can be done to avoid them to the maximum. A different protocol in radiation field can save some of those effects. HT in an intermittent approach can also proporcionate a relief in the side effects for a considerable period. One can also prevent the side effects with side medications or a change in life style, diets and supplements. Tamoxifen and/or localized radiation done before starting HT can avoid breast enlargement (Gynecomastia).
You can discuss with your radiologist in your next meeting about the matter.

I agree with your starting the Intermittent Hormone Therapy at a PSA level of 1.0. That was my doctor’s threshold. You should also program a series of tests before starting HT, such as; PSA, Testosterone, Dexa, DHT, ECG, Lipids, etc. They all will relate to the progress of the treatment.

One cannot think of his case as equal to another. In PCa we may be similar but what works for one may not work for the other. In my case, so far I am doing OK with a PSA at remission level of < 0.02 after 14 months on drugs.
I am hopeful to start my “vacations” on OFF-Drugs (first intermittent cycle) when the present shot ends its effectiveness, expected to be in May. Nobody can tell when I will become hormone refractory. However, the beauty of hormonal treatments is that the manipulations of androgens can be done at several levels and if one’s cancer is hormonal dependent, the period on HT can be extended for many years in control.
I believe that I will have at least 10 years on traditional HT before starting a second-line HT which may take me to another five. Only after that I may enter into a clinical trial with the newer drugs now on the “drawing board”. Once such fails I will then consider chemotherapy but surely with newer more efficient drugs.

To answer your questions;
1)Expect the PSA to be irregular. It does not increase or decrease linearly. It can increase its doubling, suddenly.
2)Symptoms of metastatic cancer are independent of levels of PSA. Those symptoms are usually related to bone fractions or deterioration. A Dexa scan can indicate your risks for fractures and you can avoid them with bisphosphonates.
3)You can get a list of probable side effects of IHT from the net.
4)Your quality of life will be affected by any treatment. You will need to be careful and attempt to avoid deterioration.
5)The only 'faint hope' treatments I am aware are those recommended in “fantastic” advertisements of cure or “voodoos”.

You are doing well in investigating and researching the net. You will beat the cancer again and hopefully for good.

Wishing you a winning journey in your case.

VGama

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