New to site, diagnosed 2 weeks ago

Hello everyone,

This is the first time to the site, and hoping I can find some help and support among you that have gone or are going through what I am. I am a 49 yo gay man, diagnosed with prostate cancer two weeks ago. Stage 1 with a gleason 6, involving two of the 6 cores only on the right side of my prostate. 5% of the specimen is involved. The 6 cores from the left side of my biopsy came back okay, just reflected chronic inflammation. There is no cancerous tumor or lump. The urologist said that my cancer is like capallaries through the right side of my prostate. To make things worse, I have a history of cancer in my family. Not Prostate cancer, but cancer none the less. My father died at only 63 with a very agressive form of cancer.

I've been doing a lot of reading these past two weeks, and though freaked out, I'm doing my best to educate myself on what steps I should take for treatment. My urologist, here in Washington DC, where I live, recommended a radical prostatectemy because of the relatively early age at which this is happening to me. I am leaning toward the surgery, however, I want to get more information about radiation, as my urologist really didn't give me any information when I met with him.

I have three appointments coming up this week with different urologists at different hospitals to get second opinions. I have a list of questions started to ask them all, but was wondering if any of you out there have any suggestions on good questions I should ask. Since many of you have been through this, I would love to know the questions you "wish you had asked" before deciding on your treatment. Or questions you asked that were really helpful in making your treatment decision.

I'm single and haven't had luck in finding a partner yet, and am very saddened by the loss of erections and dry orgasm that surgery will bring. I fear this will only further hinder my ability to find someone to share my life with, and don't want to be alone.

Any thoughts, suggestions or inspiration is greatly appreciated.

Thank you very much,

Rick

18 Replies

oldestnewest
  • Rick,

    I'm also in the D.C. area. Your numbers suggest you might be a candidate for active monitoring. Many urologists are going to want to cut. There are world-class hospitals in this area, but only Sibley and Suburban are connected to a major cancer center--Johns Hopkins. If I were you, I'd want to talk with a medical oncologist about options.

    If you do have surgery, it does not have to mean the end of erections. Your numbers suggest the possibility of preserving erectile nerves.

    I hope you find support from this group.

    Yost.

  • Hi Yost, thank you so much for your reply. Great to hear from another DC person. My first appointment this week is with someone at Sibley, though I believe she is a urologist. hoping they will be open to other options than surgery. I'm still leaning toward surgery, but just want to exhaust all other options first.

    Do you know of any gay prostate cancer groups in DC? It would be great to go to a meeting to talk with others in person. Would need to be gay group though, as we have special needs.

    Hope to talk more.

    Rick

  • Rick. I'm not aware of a physical gay support group in the area. Some years ago I attended a mixed support group. You're right that it makes a difference. Even here online, the advanced prostate cancer group is less amenable to sexual discussion than this one is. The guys here are great.

    Not to pry, but is your appointment at Sibley with Dr. Armine Smith?

    If you'd like to have lunch to discuss things, I can share some tips from my 10+ years in this PCA journey as a gay man in the DC area.

    Yost.

  • Hi Rick. I'd like to second Yost's comment. With a Gleason 6 and only two cores affected you have lots of options to consider before doing anything. I was a few weeks away from surgery when I was turned on to a support group in Los Angeles and that changed everything. I learned a lot more about my situation and ended up having SBRT, a radiation therapy. Five high-dose treatments. Just remember the saying: "When all you've got is a hammer, everything looks like a nail." And that's true of surgeons in particular. They rarely tell you to consider radiation. Take time to explore your options, don't rush into anything and don't freak out. You're going to be OK! --Nick

  • Hi Rick, like others here on this site have said or will say, don't rush into anything. And yes, get more opinions from other doctors. I would also suggest that you get a book written by Dr. Patrick Walsh, called Guide to Surviving Prostate Cancer. It will help you in answering a lot of questions that you have. For me, it has been 7 years since my ORP surgery. In my opinion since that time, urologist have gotten a little better in talking about sexual function after ORP. Would I have done anything different knowing what I know now, no. At the end, it's your decision as to what type of treatment you want to go with. best of luck to you.

    Dale

  • Really good reading your responses. I am just diagnosed (Gleason 6) and the doctors at Mayo left the treatment approach up to me. I thought after diagnosis the doc's recommended treatment ... oh well. I am considering the brachytherapy. I don't like the watch and wait approach. I feel like I must do something ... Talking with a friend who is an Urologist today for more input. I just want to make a decision and get it done.

    First time on site reading. I don't know how but would like to hear from others. A support group would be incredibly helpful.

  • Welcome to the group no one wants to join. LOL To hear from others, just keep participating, you'll get responses. It used to frustrate me that the doctors wouldn't tell me what I "should" do. In time, I've learned that my doctors and I are a team. We can discuss pros and cons, and that informs my decisions.

  • Hi Rick. I was diagnosed over two years ago and received several opinions. I found that surgeons tend to recommend surgery and radiologists tend to recommend radiation therapy. Dr. Patrick Walsh, whose book was recommended to you in an earlier reply, is at Hopkins and as far as I know, still accepting consultation appointments. You might try meeting with him to discuss. He provided me with some really useful guidance. Ultimately, I elected surgery, mainly because my cancer was further along than yours. It was absolutely the right decision, given my cancer had spread outside the prostate capsule, which imaging did not show. It's a tough decision, but one that you should consider carefully. Both surgery and radiation can result in temporary incontinence and erectile dysfunction, but over time, these issues should clear. Anyway, it sounds like you've got time to meet for opinions and to make a decision. Good luck in your decision and let me know if you have any other questions that I might be able to answer. I live in Baltimore, so I'm very close to you. -Bill

  • Don't make any quick decisions. You're only a stage 1, Gleason 6. Do active surveillance and take some time. I regret my decision to have surgery. I hate to see others make my mistake. Take the time to do your research, but if you do decide to have the surgery be prepared to never having an erection again. My nerve sparing surgery wasn't so nerve sparing and ED isn't easy to live with even if you have a partner.... much worse if you don't i'm sure. Good luck going forward!

  • I was diagnosed with prostate cancer age 51. I had the surgery. Social life has been a disaster as soon as men are told I cannot get an erection. I have not had sex in over 5 years. The only thing that works is the TRIMIX penile injections. This works immediately but it is expensive. I cannot fathom having the penile implant. I watch videos of the whole surgical procedure. However , Radiation also have side effects: 1) it can weaken your pelvic bones 2) they cannot "gather" all the grituitous radiation radicals that fly off the main stream to surrounding tissues. 3) The radiation can not get all the cancer and you end up having to have the operation anyway. (This happened to my friend but 4 months after the radiation ended).

  • Welcome aboard!!! I guess! You sound like me 6.5 years ago. I had the robotic surgery with nerve sparing and it's taken me all these years to get a semblance of an erection! I wish I had done the wait and observe routine but I just wanted the cancer out. No matter what your life is changing. If you are sexually active and sex is important to you, I suggest going crazy with everyone and any one!!!!! Some people say we shouldn't get hung up on the "sex" part but I am sorry, I'm a gay man!!! At least watch your condition for alittle while and don't rush into anything. There are alot of different procedures now compared to when my life changed. No one ever told me I'd also lose some length of my cock! That didn't help me emotionally. So digin, do research (you have time) but don't get overwhelmed by all the information. This is a great site, visit often. These guys are a wealth of information. My heart goes out to you.

  • Hi Rick-

    It is pure fiction that younger men are not good candidates for active surveillance. You are in your prime years for potency (not to mention loss of semen, penis size and girth, climacturia, possible Peyronie's and anorgasmia) and continence, and the last thing you want to do is waste them with possibly disastrous side effects for the rest of your life. Here's a good article that pulls together all the known data about this:

    "Can a man be too young for active surveillance/"

    pcnrv.blogspot.com/2016/08/...

    You have a very small amount of low grade, prostate cancer and only had a biopsy (I suppose) because your PSA was elevated owing to your chronic prostatitis. It is your tragedy that this insignificant PC was discovered at all - now you are forced to make a decision about it. Take your time. There's no reason to rush into any decision. If you want to wait more than a year, you should get a confirmatory biopsy, preferably mpMRI-targeted or template-mapping.

    Making appointments with "3 different urologists at 3 different hospitals" is not a good strategy. Urologists always recommend surgery - it's what they do. You should be talking to specialists in different specialties. Here are some suggestions within several hours drive:

    • Active Surveillance (I think Johns Hopkins' criteria are too stringent although you would nevertheless qualify)

    • SBRT (Sean Collins, Georgetown)

    • LDR brachytherapy (Gregory Merrick, Schiffler/Wheeling Hospital)

    • HDR brachytherapy (Eric Horwitz, Fox Chase)

    - Allen

  • Hi ....

    I understand your concerns and am going through much of what you are talking about as I was diagnosed the end of July 2017. The more I read and more I ask questions, the more I get mixed up. The doctors apparently won't recommend anything because whatever decision you make ... you need to live with.

    I think the doctor who performs the biopsy and the pathologist who analyzes the samples are most important. I supposedly have an early stage and a Gleason 6. New which is "good." But my local doctor and a second colleague of his (who I saw locally (they originally identified the lesion on a scan) said they thought it was worse than a 6 because of the size, shape and location. The biopsy was done at a large well known institution where people go for second opinions. My doctor at this institution passed a remark that he was surprised at the result too based on the scan. I am pressing him now for details.

    I think medicine, surgery etc. have their place in diagnosing however good old "eye balling", empirical observation has to have some part in it. I want it to be a Gleason 6 ... but I am suspect. It is the old story ... the core sample is of that particular spot ... but what if it is different just a small fraction away. Maybe you want a second opinion reading the biopsy slides.

    Up until these recent events I was prepared to have the brachytherapy. But now I am highly considering having the prostate removed. If it's out, there is no question and I don't have to wonder every day if I have prostate cancer growing inside of me.

    Whatever you decide, it's a decision you have to make based on fact, your gut feeling and what you think will best meet your lifestyle for the next 5-10-15-20+ years. I hear you when it comes to erections, organisms etc. I am about 10 years older than you and do think this will hinder finding someone. Perhaps the next website should be for men getting to know men who have had prostate issues.

    Good luck.

  • brk55305, I very much disagree with your comment that "good old eye balling" replace biopsy findings using staining and a microscope. PIRADS scores only identify areas suspicious for cancer - it does not identify cancer. Only a biopsy can do that. There are many kinds of lesions that look suspicious on an mpMRI, but turn out not to be cancerous when biopsied. The gold standard for assessing biopsy slides is Jonathan Epstein's lab at Johns Hopkins.

  • I was trying to say in conjunction with the biopsy, not instead of.

  • I was trying to say in conjunction with the biopsy, not instead of.

  • Hi Rick,

    After reading all the responses, I agree that based on your information you have many

    options. Explore all avenues and appreciate the fact that you do not have to rush into

    any treatment. With your age, maybe you could try active surveillance?

    Remember it is your body and do what you feel is best for you and are comfortable with.

    Good luck!!

  • A reminder: everyone should get a second opinion from their biopsy slides. Malecare.org has a page with Dr Epstein and other world class pathologists who Malecare group members have found helpful . malecare.org/second-opinion...

You may also like...