FrankTalk.org

As an infrequent poster, I hope you all don’t mind me asking for your experiences and/or advice. One of the posters on alt.support.impotence reminded me that I should also return here to post my question, so I hope if you're a member of that group and/or hypogonadism2 on Yahoo.com, please forgive my asking again. I'm just trying to fine as much advice as possible so I can be comfortable with whatever decision I make.

I’ve just been diagnosed with Prostate Cancer, Gleason Score 7 (3+4 in 2 of 29 samples) and need to decide on a treatment option. The biopsy was done because PSA levels have been fluctuating over the past 4 years starting at 3.58, reaching a peak of 8.1 late last year, and falling to 5.4 by July of this year when the amount of T-gel had been reduced by one-half. DRE is OK with no sign of cancer.

First, a little background that may help to focus your advice. I’m 68 years old, have been a type 1 diabetic for 64 years, have had 5 umbilical hernia repairs with mesh implants, and am overweight/obese (5’ 8” at 230 lbs). I was on 5 and later 7 ½ percent compounded T-gel for about 5 years (which, of course, has now been stopped). E2 has been controlled (somewhat) with DIM, but has always been what I consider too high (high 20’s to low 30’s) for all of the time I was on T-gel.

I’ve discussed treatment options with several PC specialists and have been told, because of the umbilical surgeries, brachytherapy is not an option, even though that is what I would have preferred. Cryosurgery has also been ruled-out by the specialist I saw to review this option because of the umbilical surgeries. I’m told chemotherapy is not appropriate for my stage, and High Intensity Focused Ultrasound (HIFU) is out of the question because it is not yet approved for use in the USA and we cannot afford the cost of travel to places where it is approved. Complete removal of my prostate is not something I’m willing to consider given all the potential problems / consequences I’ve read about here and elsewhere. Hormone therapy is also out of the question from my perspective since I want to keep my testicles (even though I had a vasectomy 35 years ago), and watchful-waiting doesn’t seem appropriate for a Gleason 7.

Dr. Mercola has commented on an article by Mark Sircus Ac., OMD, Director International Medical, Veritas Association, (http://articles.mercola.com/sites/artic ... oices.aspx) supporting use of Sodium Bicarbonate (baking soda) as a treatment. I’ve discussed this with the PC specialists I’ve talked with, and they all claim it to be untested, unproven theory and don’t want to discuss it further, Of course we have to expect that from medical doctors who have a vested financial interest in promoting the treatments they’ve invested in, and travel to Italy is also out of the question, so I could try it on my own, but that’s a gamble and I’m not sure that’s the wise course for me to follow.

That leaves me with Targeted Beam External Radiation as the most likely treatment for me to select, and it’s on this treatment type that I’d really appreciate your thoughts and comments.

If you’ve had this type of therapy, what has your quality of life been since then, what complications/side-effects have you had to live with, like incontinence, were they able to eliminate all of the cancer, or were further treatments required, has the quality of your sex-life been impaired or diminished, are you able to ejaculate, and if no, how has that effected your relationship, etc.?

Any comments or suggestions on targeted beam external radiation therapy or other treatment options would be really appreciated.

Lee
Still living hot and dry out here in the desert.

Lee, welcome to FT. I am a PCa guy and there are several of us on this site. I chose to have surgery and got it cut out. I have some complication (ED) but I am dealing with that well now with injections. That is the only porlem that I have experienced.

If you want to find out from some realy informed guys about different treatments I reccomend that you go to Healingwell.com and check out the prostate cancer forum. Lots of smart guys that that know so much about different treatments.

Best of luck with you decision making process. I hate cancer!

Cajun Jeff

Lee, I'm a PCa guy as well. I was given the choice between open surgery or radiation. I was 56 at the time so I chose surgery. Robotic surgery was not an option because of the aggressive nature of my cancer. My gleason score was 8 and positive 10 of 12 samples. After surgery the pathology showed that the margins were to close to call so I had 40 sessions of external radiation. A gleason score 7 is high but if only 2 samples of 29 were positive it seems like you don't need to be in any hurry to make a decision. For me radiation was a piece of cake. I would get a little tired by the end of the week but after the weekend off I was ready to go again. I do have ED and plan to get implant surgery in the near future because I'm not having any luck with the usual ED treatments. It's impossible for me to tell if the radiation made any difference with the ED. According to my surgeon he saved one side of the nerves and said I had a good chance to recover but after 3 years I have not. I had the usual incontinence after the surgery for a few weeks but that is 99% better now. I sometimes leak urine at orgasm and heavy lifting which is common. I did a lot of reading and research before my surgery and radiation. I think if I had been 10 years older at the time I would have picked radiation instead of surgery. When I made my decision, of course, I didn't know I would end up having both. With surgery the side effects are immediate but may improve over time. With radiation the side effects can happen within weeks, get worse over time up to several years later. I haven't had any notable side effects specifically from the radiation. If you can be comfortable with waiting, I would look into an anti-inflammatory diet, exercise and high dose vitamin treatment program. There has been some success stories treating cancers this way. I can feel your emotional pain in your words because I have been there.
Good luck with whatever you choose, Buck

Lee:

I agree with Jeff in that I also chose robotic surgery. That treatment is the only way to kill the cancer if it is contain within the prostate. Are their side-effects; yes. There is a new surgery procedure developed by a leading Uro out of NYC that seems to be much better in preserving erection function and I would suggest you explore, if you choose surgery, a doc who is trained in that method. Like Jeff I continue to fight ED but have had very successful almost 0 PSA since surgery. My new sexual normal is working and I seem to be PCa free almost 6 years post-surgery. Not too bad.

Your co-morbidities are much more complicated than mine so I can not begin to give medical advice. What is misstated so often that the rad. in, as I understand, all of its forms also has a side effect of ED. Only surgery and removal is the most successful way to prevent recurrence. The ED can be treated and this is a good place to experience support, shared knowledge and "good" humor in dealing with this demon. My robotic surgery was not at all bad and I was surprised how quickly I was back into the world. I was also surprised how quickly my sex drive returned; that is when one begins rehab. Even without a good hard. Let me assure you it still fells good and helps between the ears as well as between the legs!!!

I had my situation reviewed by 3 separate docs and the opinion was the same. Not what I wanted to hear, but ,it was what it was. Important is to know what you are getting into and prepare a Penile Rehab Plan in advance of surgery. It will be a new sexual normal but it can be fun and it does work- and without the mess!!

Good luck with your journey and keep us posted. Different men here choose different paths and that is OK. The important is to treat while it is contained within the prostate. Then the fun of Penile Rehab can begin.

My best,

Regards,

Dick

Cargoman,

If you are still around, my strong advice to you is to go to http://www.cancerforums.net/forums/14-P ... ncer-Forum

That is the prostate cancer forum at cancerforums.net

While many of us here or on other forums may have a lot of knowledge on this topic, there are many things to consider and lots to know that is outside of the scope of this forum. This forum is just not set up to cover prostate cancer treatment in detail.

Best Wishes

Hawk (Gleason 8, PSA 16 - recurred 50 months after laparoscopic surgery at Sloan-Kettering - had salvage radiation 36 months ago - current PSA 0.02 - survivor for a total of 86 months.