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Survival

tonybuxton
Posts: 76
Joined: May 2012

I am 81 and have just completed Novalis shaped beam IMRT. 6 weeks 2.3gy x 30. No side effects whatsoever. I had high grade localized cancer, gleason 3+4. diagnosed after TURP. Prior to which my PSA was 42 with severe BPH. I did not have my PSA tested after TURP. I immediately had RT and after 28 treatments my PSA fell to 0.4 and a month later under 0.1.
I started Zoladex 3 monthly injections after second week of IMRT. Two months later the side effects were so bad that I was advised not to have any more injections ( I was supposed to have them for 2 years) No one seems to be able to tell me what my prospects for disease free survival are. I will have another PSA test in 2 months time. But the worry and uncertainty is the worst part. At age 81 and in very good health prior to the Hormone therapy (I am recovering) I would just like to have some guide lines so as I can plan my life accordingly. Any ideas. But meantime I am exercising as much as possible and trying to follow an anti cancer diet.

Swingshiftworker
Posts: 616
Joined: Mar 2010

Congratulations on your apparently successful radiation treatment!

I would think you'd have already done what you need to do to "plan" out the remainder of your life in terms of an estate or end-of-life plan. Of course, you will have to continue to take periodic PSA tests for the remainder of your life in order to keep tabs on the cancer but you can't let the "worry" about that rule your life.

Your disease free survival depends on an assessment of your post PSA scores. Recurence is indicated if you have 3 successive increases in PSA or a rise of over 2 after reaching your "nadir" (lowest score). Having achieved a PSA below 0.1 already is extraordinary and is far better than I have achieved a year and 1/2 following my treatment. So, I certainly wouldn't worry about it (yet).

I would simply do what you are already doing -- exercise and eat well -- and just go on the things you (and your wife or SO, if any) enjoy without dwelling on the cancer and just deal w/any problems (if any) that arise in the future as they occur.

Good luck!!

VascodaGama's picture
VascodaGama
Posts: 1508
Joined: Nov 2010

Tony

I have followed your case described at your other post titled Hormone Therapy, and now followed by this thread;
(http://csn.cancer.org/node/240273#comment-1233424).

You can get the disease free survival rate by imputing your stats before treatment in a nomogram at the site of Sloan Kettering Cancer Center in this link:
http://www.mskcc.org/cancer-care/adult/prostate/prediction-tools
The two elements you should aim are:
“Planned radiation therapy dose if patient has already seen a radiation oncologist”,
And the below if HT has been neoadjuvant,
“Whether patient has had neoadjuvant hormones”

You are absolutely correct in your worries with “… uncertainty is the worst part….”. We survivours all feel the same and get used to the fact. In my case I have been on that for the past 12 years. Researching and studying any thing on PCa has given me that confidence along my journey.
Nevertheless, in PCa no two cases are equal but similar and those nomograms or tables for survival rates are just representative. Many do not fall into the medium term rates and just find themselves with longer or shorten periods.

In your posts you indicate the nasty reaction by your body after Zoladex (LHRH agonist) administration. Many of us experience similar symptoms but in many they are mild and welcomed. I do not agree with your urologist assertion that 81 years olds should not be given agonists. Moreover, if the patient is in “good health” as you commented, then there would be no reason for avoiding hormonal treatments. HT is not recommended in patients with other health issues, particularly related to heart/coronary health and diabetes.
In such risk patients HT is limited to certain drugs and only administered with caution and under strict vigilance by a specialized oncologist.

Drugs interact and the oncologist must be an “artist” in planning the required targeted medications, at the present and in future treatments.
LHRH agonists are also only recommended to be administered post a period of two weeks on antiandrogens to avoid flare (a worsen condition due to a sudden increase of testosterone levels).
Have you taken or been given any antiagonist?

You comment on the opinions of the urologist and oncologist but I wonder what the opinion of your radiologist was to your body reaction. He is the one that may have recommended the combination treatment with RT plus HT, and the protocol of dosage (Gys and mg).

Many studies on this type of combinations have pointed out to an increase in the rates of success. I myself as a layman have done researches in studies done in several countries (several races) and found that HT is beneficial when administered before RT (neoadjuvant) because it sensitizes the cancer cells receptors to absorbed radiation (it improves the RT outcome). After RT, adjuvant HT does not show considerable benefits in improving RT outcomes. Moreover, the effects of HT will “mask” the PSA results and therefore impairing any judgement of success based on the PSA as a marker alone.
This fact may impair your next PSA test to confirm your actual stats in the present time. You will need to wait until the effects of Zoladex subside (increasing levels of testosterone).

Typically, agonists lose their effectiveness 30 days after the end of their half-life. However, many guys report taking longer periods of 3-4 months before they start feeling better. You can verify the hormonal manipulation effectiveness with a testosterone test.
Low levels (castrate) means that your pituitary central axis is not functioning normal yet.
Zoladex should have caused a "stoppage" in testosterone manufacture, inducing castrate levels of lower than 25 ng/dL. The normal levels would start from 280 ng/dL, and that should give you a relief from menopause like symptoms.

Swing is giving you good advice on what to do “next”. In my case on HT (LHRH agonist Eligard) during 18 months I have experienced numerous side effects but mild. Fatigue was the worse and now I got low libido. In any case, I managed to control the advance of the cancer and aim survival, and such has provided me with the possibility of starting a “vacation” Off-drug (now on going), and therefore the possibility of getting a relief from the HT side effects.

I hope you improve and recover from the treatment.
Good luck in your journey.

VGama

tonybuxton
Posts: 76
Joined: May 2012

Thank Vgama
It is so nice to have someone like your self to exchange problems. You do seem to be suffering much more than me. I feel fine at the moment. Some of the side effects of the HT are wearing off.
The reason I am concerned about my survival is not from my concern. I have had a very good and happy life. And I am quite ready to "call it a day" I have outlived all my family except one brother(who has kidney cancer) and most of my friends. Also I find life at my age rather boring.
I live only for my wife of 40 years and my adopted daughter (niece) who would be absolutely lost without me. My wife has severe diabetes and I have to constantly supervise her and her medication. My daughter is mentally retarded. When I got really sick and could not stand up because of the hormone treatment they really suffered
My wifes sister has another year to go into retirement then she will come and help look after my wife. So I just want to be assured that my cancer is not going to come suddenly back and immobilize me., like the Hormone treatment.
Where I live we have no insurance. No free health or facilities to help us. Only expensive private hospitals.
I just want 1-2 years good life to look after my wife and daughter until her sister comes here. (she lives in another far distant country). I did have 3 months HT with and after my RT so in spite of the dreadful side effects it is likely to have done some good.
What ever the doctors recommend I will never take Hormones again. They nearly killed me.
good luck with your life
Tony

Kongo's picture
Kongo
Posts: 1167
Joined: Mar 2010

Tony, I have read your other posts about your bad experiences with hormone therapy administered at the age of 81. Frankly, I am wondering if you were given a complete overview of even the radiation treatment and am curious as to whether or not you sought second opinions. Certainly the TURP was appropriate for you BPH but a PSA six weeks following that would likely have shown a significant decrease in your PSA score. I suspect that much of your PSA was caused by the BPH and not prostate cancer. The TURP would also remove many of the cancer cells within your prostate.

Although the Novalis IMRT is highly accurate and unlikely to cause adverse side effects I doubt that it will contribute to your long term survival. At 81 you have already beat the statistical average (good genes and a good life I imagine) and undoubtedly you have many more productive years ahead regardless of whether or not you had any treatment at all. I share your opinion in another thread that your HT was unnecessary and may have simply been part of the doctor's sales program. As you said, it is far more likely that you will eventually die from something other than prostate cancer.

While you can't rewind the past you can certainly take stock of what is ahead and I hope you seek some second opinions from different oncologists about what treatment is appropriate for your diagnosis, age, and quality of life expectations.

I wish you the very best as you go forward and thanks for sharing your story.

K

tonybuxton
Posts: 76
Joined: May 2012

Thanks very much Kongo. It is so reassuring to be in contact with people like you who can really help me. I believe the urologist removed 20 grams of my prostate when he did my TURP. From the part removed an accurate assessment was made that I had High grade localized advanced cancer gleason 3+4. He sent me to see an oncologist who did MRI and scans to see if the cancer had spread. Apparently it had not. He put my grade at high risk because of my high PSA and the fact that I had taken finesteride for 2 years which would reduce my PSA reading. He recommended Novalis shaped beam RT. I did contact my urologist about RT and he agreed except he did not think that Novalis was any better than conventional IMRT.But since my wealthy younger brother offered to pay for the best treatment for me I opted for Novalis,.
I still wonder how much of my high PSA was due to BPH. When my PSA was 27 two years ago I had a biopsy which was negative. The urologist put the high PSA down to BPH.
So I might have been put in a higher grade than I should have been.
Anyway thanks again and I will just have to wait my next PSA in two months time to see the out come.
Tony

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