Recent Diagnosis Of Pc Looking For Help And Advice

I was recently diagnosed with PC. I am 48, single, in good health, and have no other symptoms. It was caught with a blood test and I was told that the doctor couldn’t feel a tumor with a dre. My psa is 5.8 and they say I have a T1C with a Gleason of 7 (3-4). I have been to 3 urologists and 2 recommend surgery and one external and seed radiation. All make a good case for their opinions and I can’t find anything other then the doctor’s opinion that their approach is not the best.

Radiation guy truly believes that is the best approach and I have to admit that he makes a good case. In particular I am attracted to the numbers, I can understand them, and can live with the likely results. There seems to be less uncertainty about what life after will be like.

The surgeons tell me I have to think in terms of decades and surgery is the best bet for life expectancy. From everything I can find the results of the two approaches are nearly identical in terms of cure, life expectancy, and continence. Unfortunately, nerve sparing is a question mark for surgery. There seems no doubt that the nerves on the left will have to go and I can’t get them to give me odds on the right. One says he thinks he can spare it and the other says he can probably spare it. The biopsy shows the left side is more involved with all biopsies showing a cancer up to 80% involved with the Gleason’s of 7. The right had 3 biopsies, one 20% involved with a Gleason of 7, one 10% involved with a Gleason of 6, and one clear of cancer. The doctor recommending radiation told me that I am not a candidate for nerve sparing surgery at all. Therefore, the surgical approach seems to have the most uncertainty as far as potency is concerned. My internist also feels surgery is the best approach from a life expectancy view.

I also like the idea of surgery because it gives you a second chance with radiation if the cancer were to return. Again, there seems to be no consensus here either. The doc recommending radiation says there is an 80% chance I will have to have radiation after surgery anyway, one surgeon says 50%, and the other surgeon says there is virtually no chance. I am led to believe that the radiation is a one shot deal with the local life time max, eliminating the second radiological chance.

I believe they are all telling me the truth as they know it. I am looking for experiences, how you made the decision, what your life after treatment is like, or anything else you think I should be aware of.

Thanks in advance

Mike

The following is a recommendation I left for someone else. The book; A Primer on Prostate Cancer: The Empowered Patient's Guide by Dr. Stephen Strum, the single most respected person in the field of counseling PC patients on their options. Knowledge is empowering!

Your immediate future of decision making is fraught with tough questions. Some I did not ask and you may want to know something about if quality of your sex life is a consideration. How the procedure will affect your ability to have an erection, orgasm, or if you are fortunate enough; a dry orgasm, potential for erectile dysfunction it is a topic that many doctors are hesitant to discuss, because, in my opinion, they do not want you to leave them for a procedure in the tree. Some doctors rely on half truths by giving answers that respond using statistics referring to cures, there are no cures for cancer, only remission. Secondly, the numbers (years) stop just short of where most procedures fail.

So many influences to consider, they can and will make you a little crazy. After all the pushing and shoving is over, statistically speaking, we all only have 15 years from the time we were diagnosed, regardless of the procedure we select. To me, quality of life choices are very important components of my decisions. And I eat differently, take supplements, and exercise with a mission to affect my statistical outcome.

I am trying to get as smart as I can as quick as I can. I have noticed the tendency of the doctors to be more optimistic then the next doctor down the line. Each time I talk to one I use that info on the next and the explanations and possible side effects are explained in more detail and the odds are adjusted. It is a time consuming and expensive way to get info but it seems to be working. I will definitely try the book you recommended.

If I may ask, what route did you go? How old were you when this happened? How would you rate the outcome? I know these are personal questions but the only way I think I can break through the noise will be first hand experience.

Many thanks

Mike

You are to be commended for your tenacity in being proactive rather than reactive. By your posting, you’ve had a biopsy. So you are asking a lot of questions, that is excellent. In answering you without telling you I feel I am giving back for all the time so many men have spent time talking with me and my family history and personal set of conditions.

No, I have no problem talking about my own experiences. As the luck of the draw would have it, my family history of PC is a bit of a quandary, no cousins developed the disease and the death records of my grandparents were written such that they offer no help. My father had benign PC, where at 95 died voiding a lot, of complications following a stroke.

There are four sons in my family of which I am the youngest at 57. My oldest brother (15 years my senior) was diagnosed 6 years ago. He had a radical prostatectomy, testis removed, radiation, hormone therapy, all of which failed and he now is fighting for his life with PC metastases in his lungs. His PSA never went over 3 and his prognosis is grim. My second oldest brother (10 years my senior) was diagnosed at the same time as myself. His PSA never went over 4.2 (nor mine either) and was treated with temporary seed implant, followed by external radiation, his PSA is 0.(something). He has issues with penal dysfunction, as I do and most everybody does after any procedure, some earlier than others. I attend support group meetings, as I suggest you do as well. In one of those meeting it was discussed that even men that have seed implants will experience sexual dysfunction and some will develop colon problems. I have personally undergone the HIFU procedure and it is too early for me to discuss it in any detail until I have another Ultrasound Color Doppler guided biopsy at 6 months after the procedure, which for me will be in February.

My third brother (5 years older than me) is the odd man out, his PSA is less than 1.00 and unlike my other brothers and myself eats very little meat and his wife of 30 years, has made him drink raw juice off and on throughout his marriage and take many different kinds of supplements. If there is something to his low PSA, I could only say it takes a long time to get this damn disease and it probably takes a long time of prevention to avoid contracting it if you have a predisposition to contracting it.

In conclusion: buy the book, go to support group meetings, if there are more than one in your area, then go to all of them. You will learn different kinds of information from each. Go to http://www.pcref.org and look for Dr. Barken’s Tuesday night’s phone-in conference call where he takes any call relating to PC. It’s one of the groups I attend in San Diego. Dr. Barken has a passion as a retired Urologist to help clear the fog for us. There are other sites of which I am sure you have found that have counselors you can call and talk directly to a survivor with questions. I am sure you know the level of PSA is not as important as the speed of change. 2.5 is the new level in which you are suppose to take action, because too many of us are dying. And if you have PC in your family, biopsies are indicated at a much earlier PSA. In my family, PC is much more aggressive than many other men I know. My oldest brother was led-on by his doctors and consequently, its now to late for him and because of his experience it is fortunate that it is not to late for me (maybe).

Hi Mike,

You have plenty of time to explore options, you are taking the right approach in asking questions about treatments. Prostate cancer can be cured, surgery can remove it all if it is confined to the capsule, within the prostate, and external beam radiation can also kill off all of the cancer cells, but there is no guarantee with either procedure. Hormone therapy does not cure it, but it can control it for a time until the cancer no longer needs testosterone to thrive.

I am 68 and still have prostate cancer. It was two years ago at age 66 when my PSA of 5.8 in July went to 7.3 in September, and my biopsy in October showed a Gleason 9 with enlargement on the right lobe. Since my cancer was so fast growing and aggressive, the only treatment option deemed appropriate was the radical prostatectomy. My urologist said he could not spare the right nerve as the tumor was too large on that side, but he would try to spare the left nerve. At time of surgery, he could not see it, and they are both gone. No erection is possible. My tumor was large, 13 cc of a total prostate volume of 36 cc, nearly one third cancer. A normal prostate is about 20 cc. The cancer had not spread to the lymph nodes but it had spread to the seminal vesicles. Prior to surgery, MRI, CAT scan, Bone scan, and X-rays did not disclose any spread to bones. Three months after surgery when we hoped for a PSA of zero, it was 0.58, and in ten days to 0.71. I started chemo therapy for four months, lost all my hair, fingernails, and toenails. I had weekly IV's with Taxotere, also known as docietaxol, for three weeks then one week off. The day before chemo, I took 90 calcitriol tablets and a corticosteroid tablet for nausea. I gained weight, but it wiped me out. PSA steadily went down and was 0.21 after four months. Then it started up again, so within two months I started hormone therapy using Lupron injections and daily casodex tablets. Those are expensive, about $500 per month in the US, but I got mine from Canada for $225 for 30 tablets, same drug. After the first month, my PSA went to 0.01, and after 6 months we stopped treatment as was planned. The the PSA started up again, 0.04 in two months, then 0.22 at 5 months, and now 0.70 after 8 months. Today I got another one month Lupron shot and started the Casodex one week ago. After a time, maybe years, the cancer becomes non-androgen dependent, it no longer needs testosterone to thrive, perhaps it is a different type of cancer cell that becomes more prevalent, a clone. That signals the end. After surgery, there is no target for radiation, so do not hold that out as a hope. Radiation can be used to shoot the tumors that will develope in the bones, that is pallitive treatment. I have a suggestion for you, more shortly. Hormone therapy now to shrink the tumor.
Jim

Boy, have I been going to school on this. And the best info I have gotten so far is exactly what you said, I have time. I have been able to slow down and educate myself and it has really helped. I have been able to tap into some real good resources and found tons of good info. I finally figured out why the docs were all over the map with their recommendations, there are plugging you into a statistical model and then taking a optimistic or pessimistic outlook. To them, it’s all about the odds and really not about you. I also figured out that they will always recommend what they do the most and you really can't argue with their recommendation from a statistical point of view. In the end, it is up to the patient to decide.

Anyway, the good news is I have options and in a sick kind of way the bad news is I have options. Getting good info from the docs has been like pulling teeth but I am getting there. I have found you really have to hold their feet to the fire and be as smart as you can be when you talk to them. I am on round 2 of questions with all the docs I have consulted with and the answers are starting to get more detailed. The good face they initially put on their recommendations is starting to wear away. The outlook is still good, but the downside of each treatment is becoming clearer. In the long run, I think I can make a more informed decision. If you are interested I found a couple really good web sites with links to others.

This one is written for doctors by doctors but the info seems unbiased
http://www.jurology.com/article/PIIS0022534705636403/fulltex

This one has a calculator that I found really helpful, particularly when deciding on combined treatments. I think there is a tab that would apply to you.

http://www.mskcc.org/mskcc/html/10088.cfm

This one is the best I have found for laying it out in close to plain English. Click on PC papers on the top to get to info. In particular I found the 3 part series titled newly diagnosed with PC helpful but it migh be old hat to you.

http://prostate-cancer.org/

Not sure what I am going to do yet, but I am getting closer.

Best of luck and hope to hear from you soon. My email address is --- Message edited by CancerCompass staff: for personal protection, email address removed. Please review CancerCompass Member Guidelines at http://www.cancercompass.com/common/guidelines.html ---
Mike

Hi Mike,
Sorry about your diagnosis, but you are certainly on the right track to educate yourself and make your own choice of treatments which best suit your situation. About 50 months ago at age 61 I was diagnosed with PC and chose to have a radical prostatectomy. Biopsies showed extensive cancer in all 4 quadrants, despite nothing obvious on DRE. After surgery, the tissue study found PC had advanced beyond the margins, and was in both seminal vesicles and l lymph node. My Gleason score was an atrocious 9-10. Really scary. After 2 weeks my PSA was .4 and I immediately went on HT (Lupron), and in 2 weeks my PSA was undetectable and it remains undetectable after 4+ years. I am continuing on the HT. So for me, a radical and HT has been a great choice. Initial side effects were considerable: Extreme hot flashes and night sweats, fierce itching, esp. on my lower legs (lotion helps), low energy and stamina (could have been recovery from surgery, but lasted for nearly a year.) I am of course, completely impotent, but this is not a big problem because I have no sexual desire either, due to almost no testosterone (tested at 16, and normal is 300-400 I think). Other than the impotence, the side effects to HT are now minimal. Supposedly, HT results in considerable bone loss, but my bone density is completely normal. Some other factors may be helping my progress: I am extremely physically active, playing a variety of sports, usually daily, and if not, I work out. I also take a variety of nutritional supplements associated with cancer prevention/cancer slowing. These include a lot of soy (capsules and soy protein powder), green tea extract, selenium, boron, and I eat salads and fish a lot and not much red meat, etc. and have a fairly normal healthy diet. I have a strong support group, and a fairly low stress life style. There is a lot of research being done on PC, with some very encouraging findings on innovative treatments. Much of this is in clinical studies. If we can live long enough we may very well benefit from medical advances within the next ten years.
Feel free to contact me further if I can be of any help. Good luck and God bless you.
Pat K

Recently Diagnosed have been given various options. PSA 5.7 and Gleason Score 6 (3+) I am shriking the prostrate with Dovidar and taking an array of natural pathic products that were suggested by CTCA and Natural Health Associates of Hamden, CT. Both ND's were in line with each other and supportive of my choices. I thank CTCA and others who have been supportive. I am still researching the options while shriking the prostrate.

I have been advised by a dear sister-inlaw who has her masters in nurse science and has been a teacher of nurses and the main care taker of a mother and father who both lived to almost 90 and 91, to ask specific questions. The main ones I have now are: What kind of prostrate cancer do I have? (Only one sample out of 12 showed the cancer cells.) Is it fast growing? is it curable without the radical use of radiation and surgery?

Your PSA and gleason are not that bad. Assuming you are <65 and otherwise in good health the recommended options would be watch and wait, radiation or surgery (RP). Prostate cancer is not fast growing but the only sure cure is surgery. Thats why if you have several years of life expectancy and your PC is localized , RP is a reasonable option. It will cure your PC. Of course it does have some side effects. Studies have shown that your chance of being disease free at 5 years is twice as good with RP compared to watch and wait.

You may want to look at Hifu, I am 56 and like you have 5,5 psa gleason of 6 Hifu is not yet FDA approved but is in trails now in the US.

A lot less side affects with HIFU plus you can be retreated.

I do not like the fact once you have Seeds or Surgery, thats you have with the side affects for the rest of your time.