Looking for Info

Looking for Info

Hello,

I'm a 53 and was diagnosed 8/13/2016 with prostate cancer PSA 4.8 and Gleason 7 I see a new Doc 9/14/2016 it will be my 2nd opinion at Dana Faber in Boston. I'm assuming that my diagnoses will not change. I'm leaning toward having it removed so I'm cancer free.

I would appreciate any information and what other men are going through with the removal of the prostate I want to be mentally prepared for what I will be going through.

Thanks Wireguy

21 Replies

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  • Hello Wireguy.

    Glad you found the group. You will get great input here. Coming into the weekend. If you don't get much....write again. Best wishes on exterminating it.

    Jackie

  • Hi Jackie

  • Welcome to the group. A lot of great people here. I had DaVinci surgery last April (G 8, T3N1Mx, Stage 4D1, Ductal). Here is some information that I leaned.

    Except for a shorter recovery time, the outcomes of open vs robotic surgery are about the same. The most important thing to consider is the experience of the surgeon. If possible, you want a surgeon that has done THOUSANDS of operations. Mine did the first DaVinci surgery back in 2001. Another thing to discuss is what they will do if the cancer moved into a pelvic lymph node. Most surgeons take out a number of lymph nodes and test first for cancer. If they find it, they will end the operation then and there without removing the prostate. I went in knowing that at least one lymph node was cancerous and told the surgeon to continue no matter what. (Note, many people here do not agree with my desision.) Once home I wore "backpacker's" pants - the ones with zippers on the side. In that way I could go outside wearing the bag with no one else knowing. Leaked a lot the first two months after surgery. But riding a bike worked wonders for me. Went from over 700 grams a day sto less than 5 grams. My guess is that the bike seat worked on the pelvic floor.Trimix worked well - that is until I started hormonal.

    Good luck. Listen to as many people as you can, but do what you think is correct for you.

  • Thank You

  • Thank You

  • Diagnosed in March with PSA 7.6 and Gleason 8. Had robotic prostatectomy in June and 6 week post-op PSA was 0.04. Side effects are ED and incontinence which is pretty much disappeared or/and tolerable/manageable. ED is the issue not going away.

  • Thank you and good luck to you!

  • Sorry you have joined the club no one wants to be in. I did not see much specific information about your numbers (family history, type of biopsy, number of positive cores, number of those with G7, whether the G7 is 3+4 or 4+3, etc.) Without knowing specifics, you may have already done what I am suggesting you might consider. A second independent reading of your biopsy slides may be helpful and reassuring. You may want to consider a 3T multi-parametric prostate specific MRI (3T mp MRI) to determine if there are other tumors besides what was found on biopsy. Knowing that might open the door to other types of treatment such as focal laser ablation, cryotherapy, focused radiation, proton radiation, etc. If you have not had scans to make sure the cancer has not spread to other parts of your body, that might be a consideration. As suggested by others, whatever treatment you choose, make sure the doctor has had a lot of experience with it. You may also want to attend a peer group of those who have traveled this road. I find I get a lot of satisfaction and knowledge from others in this boat.

    At your age I can understand wanting it out in order to be "cancer free". You probably know that it can come back no matter the treatment. I had a robotic assisted radical prostatectomy and after having no detectable PSA for 17 months, it is now rising. Also, you and your spouse or significant other need to understand the consequences: possible incontinence and ED. I am OK with the first, but do still have the other after 2 years post-surgery.

    Please note I am not a medical person, but someone who has had to make the same very difficult decisions. I like to think I have learned some things along the way. Whatever path you take, it has to feel right to you and never second guess your decision. Wishing you the best and good luck.

  • Thanks for the info I see two doc's tomorrow.

  • My PSA 4.8 -- G7 3+4 no PC runs in my family have a brother who is 66 years old and his PSA is Normal.

    My biopsy: I don't know what type but 12 needles only 3 had cancer two where 3+3 G6 and one was G7 3+4

  • GA,

    What is your next course of action now that you have biochemical failure

    Gus

  • I am basically just getting PSAs every 2 months and the readings have been steady at 0.2. The 2 medical oncologist and 2 radiation oncologists wanted to start ADT and 39 radiation treatments. I feel those are probably in my future, but not ready for them yet. I had a 3T mp MRI with Dr. Busch in Chattanooga. I also went to Phoenix to get a C11 acetate scan with Dr. Almeida in Phoenix. Both were negative so I have concluded (hope) there no metastases to bones or soft tissue, at least none that are visible at this point. My understanding is the window for the most effective radiation is done when the PSA is <0.5. However, I recently saw a study that said radiation should be started at 0.2. I probably will start some salvage treatment at 0.3, hoping I do not get a large jump on the next PSA. Please let me know if more information would be helpful to you or if you have any thoughts on what I am doing.

    GARunner1

  • I was diagnosed earlier this year at the age of 59 with 3 plus 4 , two positive cores (low volume) and a psa of 7.9. I spent three months researching options (meeting with surgeons, radiologists, support groups, lots of sites on the Internet) and then saw my psa jump to 13.9 and then 11.7. That scared me enough to make a decision which was to have a RP which occurred on July 27, a few weeks after I turned 60. Based on research and conversations with 4 people I knew who had gone thru this I was expecting the worst while trying to stay positive. In the meantime I upped my exercise routine and changed my diet and was in pretty good shape. The surgery wasn't bad and I was out of the hospital in 24 hours. Catheter out on day 6. Still wearing one pad a day but imcontinence hasn't need as bad as I thought and was pretty much dry overnight and in morning right away. Based on conversations I pretty much accepted that I would not be able to have intercourse ever or for quite awhile but I have more hope there now. No intercourse but I have been able to bring myself to orgasm via self stimulation multiple times. Very hard to explain how that works given no ejaculate. Another 6 weeks until I get my first post op psa results and I am a little concerned about that although I know I will still have options and that if can come back anytime. Do your research and find a treatment and Doctor you feel comfortable with. Mine didn't have the best bed side manner but had done 1,500 of these and had a great reputation and in hindsight I am glad I picked him. Good luck.

  • Thanks

  • Wireguy- Welcome- unfortunately. I had cryosurgery in 2002- my PSA was 3.6 and Gleason was 8. I selected cryosurgery because it is repeatable which may be a defeatist attitude but

    I have been lucky not to have it come back- yet. 14 years of PSA's less than 0.1- as lower readings became possible the 0.01 became 0.07. I am now 78. Good luck with whatever you choose and I agree with others here who suggest gathering as much information as possible- some hospitals have Prostate Cancer support groups and I found them helpful as usually everyone attending gets to give their story but in the end you have to fit your situation to what you've learned and factor in your confidence with your Doctor.

  • Glad to hear your getting second opinion. I believe Mass General has an excellent Proton Radiation clinic. I had proton radiation 7 years ago, my results are very good. No bladder problems, no leaking, no diapers, still can have sex, PSA is negligible, 0.046. I'm 79 life is good. Please do a lot of research before you make your decisio n. Ask the hard questions. Good luck to you

  • I did the proton therapy as well. Well worth checking into. Recommend reading bob markini's book before making final decision

  • Wireguy.., while I am not an expert, I am a 23 year Prostate Cancer survivor diagnosed at age 53 like you. Statistics show that the younger one is at diagnosis, the more aggressive PC seems to be. Also, while there are impotence and incontinence issues related to having the Prostate removed, there are options available to handle those issues if and when they are needed. As a PC mentor and facilitator for our PC support group I usually tell men your age who are still rightfully concerned about sexual activity, "your erection won't do you any good in the coffin." Cancer can kill you, impotence won't.

  • Thanks ng, I need to stop thinking with the small head and think with the big head thanks for you support how long from the time you where diagnosed to the time you had your PC removed?

  • Wireguy..., I do not want you to think I dismissed the issue of impotence because I know it IS an important part of us men. My concern from experience with mentoring and the group I am in, is that more than a few men have made the decision that being able to get an erection is the #1 issue and TOO MANY TIMES, they then say, "if I had known then what I know now, I would have taken the cancer more serious.

    To your question of how long... I was diagnosed following a biopsy in Feb, 1993 and had radical surgery in April, 1993 after talking with 2 other General Docs who worked in the same dept my wife worked. They both recommended surgery. Keep in mind, back then, the only option available to me was surgery. The other non-surgical procedures were just being developed. But after 25 years I am still alive and still happily married, AND there are different ways of having sex, if you catch my drift. :) By the way, I have tried most of the options available for impotence. Some worked and some didn't. Every guy is different. Good Luck my friend.

  • As suggested get a.secomd biopsy opinion...Go to the Male are wen page and click.on the link in the upper right of the page to find out how to do this. Usually it is covered by insurance.

    Joel