Newly diagnosed scared and confused.

Newly diagnosed scared and confused.

I was diagnosed 4 weeks ago. The Urologist was terrible I feel so violated from the experience. Out of 12 biopsies 11 were positive for PC. I am also HIV+. I immediately had my primary care HIV specialist refer me to our Cancer Center. Met with the oncologist yesterday. I did not qualify for the hormone trial just 45 days of radiation. Not sure it is the right decision. The urologist was just in a hurry to remove my prostate. That is why I quickly switched to the Radiation Oncologist. I realize today I need to ask more questions before I start radiation. I am also going through a divorce of 12 years. Being 56 and suddenly single here in Palm Springs has all ready been a nightmare. Now this I now am certain I am doomed to be alone. I have 2 friends who live in my complex. I go to school full time carrying dual majors. The only thing that gets me through each day are my 2 black lab service dogs. To be blunt I am a mess lol

No I have not did any googling until my ex gave me to the link here. This is all I have read. He is against radiation for me. My Oncologist told me yesterday I can still get an erection and still orgasm just no more ejactulating. In the gay world that is huge. I thought I was strong enough for this but now doubting myself. I have been a mess for 4 weeks, today different but not really better.

Thanks for my vent

Craig

13 Replies

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  • I hear ya. I was 57 and was 30 days after a divorce when I got the news. I quickly got myself some psychotherapy so I could think straight, and learned the skill of Mindfulness so I could stay focussed on the present moment.

    First - breathe! You didn't provide any information about your risk level (PSA, stage, and Gleason score) but even if you are high risk, taking more than 3 months to make a decision is not likely to make a difference in the outcome. Prostate cancer is very slow growing for a long time. If you provide more details, I can perhaps steer you towards treatments that may be worth exploring. Also, do you have any restrictions on where you can be treated? I talked to 6 different specialists and took 9 months to make my decision. I chose SBRT (5 radiation treatments) and have had no permanent side effects of treatment, other than loss of cum. That means I am fully potent, complete feeling in my prostate, good orgasms, better urinary function than I've had in years (I never get up at night to pee), and no rectal issues.

    With surgery, you are assured of losing your ability to cum (although orgasms are usually preserved, even in guys who lose potency). With radiation, the odds are about 90% that your cum will dry up. I know a couple of lucky guys who still are able to shoot. I had SBRT 6 years ago, and I very much miss cum at orgasm. I usually tell guys upfront not to expect a mouthful or an assful. Sometimes it's fun to watch them try to get it, though.

  • All I know is I am medium stage. My PSA was 9.7 4 months ago. That's all I know for now. I am on basically Medi-Cal so I am limited to my area with my provider. Plus financially I can't afford a commuting treatment. I trust our Cancer Center here. A Instructor at school is a patient there as well and said I made the right choice.

  • Start getting into a habit of asking for and keeping copies of all your medical reports - especially your biopsy and PSA reports. The idea is that YOU are in charge of your health decisions and not anyone else. It is not for anyone else to tell you what choice is right for you - only you can decide that.

    If you are intermediate risk, that would mean your Gleason score is 7 (either 3+4 or 4+3). If you can afford $250, it is a good idea to get a second opinion on your biopsy slides from Epstein at Johns Hopkins (and not anyone else). The Gleason score is very important and dictates which treatments are appropriate for you.

    If you have to use that Cancer Center, then you have to take what they offer. (I guess they don't offer brachytherapy or SBRT.) 45 treatments is a bit of an ordeal. Make sure you exercise a LOT, and cum as much as possible - blood supply and use helps preserve function. You can get cheap Viagra from alldaychemists.com and split the pills to make them go farther - taking low doses every day for about 6 months (starting with your first treatment) may help preserve erectile function.

    Take your time.

  • Craig,

    Allen has already given you good advice. The very best was probably to take a breath. You're still in shock. Be assured there is a virtual certainty that you will get through your initial treatment, and life will go on.

    I'm nearly 10 years into my experience with this. Now age 53. From what you've said so far, my initial diagnosis was worse than yours. I'm HIV-, but my best friend is HIV+, so I have some insight on that part, too.

    It sounds like your oncologist is a radiation oncologist rathre than a medical oncologist. Is that right? If so, then it's no surprise that at this point you've seen a surgeon who wants to cut and a radiologist who wants to radiate. I'd like to see you have a discussion with a medical oncologist who might have a broader view.

    It sounds like you are going to Desert Regional. You talked about not being able to commute for treatment. Are you able to get over to LA for consultation/second opinion? Sometimes men have a quarterback at a major cancer center but have treatment locally.

    All my best. Keep us in the loop.

    Yost Conner

  • My 2nd friend a well rounded nurse was here with me bringing me some soup when I got your reply. Yes you are correct I was diagnosed by a cutter and just saw a Radiation Oncologist. Her and I both agree with you I should see a Medical Oncologist. Thank you so much I believe that to be one of my next steps. Your very attractive BTW. Made me smile lol

  • Hi Craig,

    My primary advice is to chill. I know that is easier said than done, but I would put each issue in its own "bucket," instead of thinking of them all at the same time.

    I consider myself to be very fortunate. I'm 57, single and HIV- . In December I got my biopsy indicated that 2 of 12 biopsy samples had Gleason 6 cancer, one was 20% involved the other was 60% involved. I went through the Holidays with this knowledge and in early January met with my local urologist. He suggested surgery. I wanted a second opinion and went to the University of Pennsylvania. Again they suggested surgery as I was "young and fit" (haven't been called either in a long while)! So, I set a date (March 8) for my robotic prostate removal at Penn.

    When I got home from the second opinion all of the thoughts you indicated were worrying you started racing through my head and I knew I had 6 long weeks to worry about everything. I made two decisions that were helpful: 1) to paint my home's main hall and 2) to go to the International Bear Convergence in Palm Springs. To be honest...both helped occupy my extra time and convince me that I was desirable (this very attractive young guy from PS and I are still in touch).

    My surgery was 3 weeks ago. I'm just about fine: no more cancer, very modest dribbling, and I'm getting erections (amazing!), but haven't done a "test drive" yet. I'm back to work and feeling about 90%-95% of normal.

    So, there is life after prostate surgery (or whatever you choose). And...my house is even looking kind of spiffy!

    I wish I could buy you a beer and give you a hug. It really will be okay.

    Peace.

  • Thank you

  • The cancer isn't gonna get you tomorrow; you've got time, to think, to breathe. Sorry the urologist made things worse--I had a similar experience with the first doc I had when I had had kidney cancer (that came out before the prostate cancer did--two separate surgeries a few years apart). Anyway, I changed doctors, one of the best things I did. We've all got every right to expect to be treated well; when we're not it makes us even shakier--but a mean or unhelpful or sarcastic or whatever doc is not your fault. Since I made that change my docs have been considerate and helpful, so I hope your luck improves in that direction, too. You've got a lot going on; I hope your friends continue to be helpful and kind and I hope you can be kind to yourself. Good luck.

  • Hey, Craig, I was where you are years ago. This not easy, but it is "doable." I hope you will contact me privately (stelar0511@aol.com) and we can exchange ideas. Please remember that this is not about what you are losing . . . erection, ejaculate, and so on, it is about what you are gaining . . . a healthy life. You can hope that none of the bad stuff will happen, but it may. I will be happy to share my experience with you if you would like that. Take care, Buck

  • Craigarz that IS NOT TRUE. Radiation with also eventually take away your erections..it will just bve a much slower process. In addition, if you have 11 positive sections, that is not a cool thing. Chances are the radiation will not get it all and you will have ot have the operation anyway. Thusm, you will currently be recovering from the radiation side effections concurrently ( same time), having to deal with the prostate removal operation. I would think twice on the radiation. In addition, once your prostate is out, 95% of men never get their erections back with the exception of the penal injections, and a few responde to the cialus or viagra

  • The initial diagnosis is a shock for all of us. If you are an avid googler, you will find all kinds of statistics that are pretty scary. Remember that those statistics are averages, but you don't know which side of the line you will fall on so it's not helpful to get too hung up on what you read for stats.

    My initial diagnosis was PSA 89, Gleason 9, with mets to local lymph nodes. You will notice that everyone on here will ask you your PSA and your Gleason score because it does help suggest what might be in line for you. I'm 52, so pretty young for this type of aggressive PC. I took the approach to be as aggressive in my treatment as I could, given my otherwise good overall health. My urologist and radiation oncologist worked together on my treatment plan. I immediately got a shot to reduce my testosterone (hormone deprivation or ADT) had surgery about a month after diagnosis and then radiation to the pelvic bed about six months later. My PSA dropped to 0.04 at it's lowest but now is climbing again. Not great news. I continue on 3-month injections of Lupron and will probably add in Xtandi in June if my PC has indeed become castrate-resistant.

    But I focus on what is good. On the whole, I feel good. I do have side effects from the hormone deprivation which I am happy to discuss with you if you want. But I continue to work, I am getting out and traveling, doing my bucket list, and enjoying life in a way that I really wasn't before my diagnosis.

    Please remember that everyone's journey is different. Side effects occur for some but not others. Treatments that failed for me might help someone else for years. The only thing we can do is live a day at a time, face one challenge head on until the next one comes.

    Doctors are often discussing PC as they do HIV these days. Once a sure killer, now HIV is a chronic disease. They hope to get PC to that stage too. I think that is all of our hope in this forum.

    Best of luck.

  • Craig, Check the long term effects of Radiation, 5, 10, 15 years down the road. No question is dumb, only the one not asked!

  • Welcome , many of us here have been exactly where you are at now..There are probably not many questions or particulars that you can't get an informed viewpoint on here. No matter who you are, this can be a terrifying experience.If you are recently diagnosed before receiving any treatments you might qualify for the test drug Tak - 700.Ive been on it for 2 yrs. and now I have no signs of P C .. That's going from #4 non op mets ,considered terminal no cure..Hopefully you are not that advanced .I did The RT like you are offered .But I did at the same time Adt & Tak 700? I thought that I was fearless until PC put me in kidney failure and near death. I suggest that you do get a prostate cancer specialist and hit it as hard as you can.Im nor the best informed person on this site Some of the knowledge and advice can help you immensely..My urologist told me that he was mad because he wasn't going to make any money off of me because I wasn't a candidate for surgery and that's his speciality and their bread and butter..Urologist are not the best informed on PC ..Sure, they know the basics but you need a specialist to call the shots for you ..I feel for you not just 1 thing but 2..We can help you with support so stay in touch.

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