New Journey

Doctor told me today that my recent prostate biospy is positive for prostate cancer.  Now he wants me to get additional tests (bone scan and MRI), and then have discussion about treatment options.  Am trying to be strong and steadfast with this news. And am looking for support/information sites.  Found this one which appears to be active. Is this so, or do you recommend other sites.

By the way, I thought the biopsy experience was one of worst things i ever experienced...but i suspect there will be more things i can add to that list pretty soon.

   

Thanks Magaboo, i'll provide more info in the signature. Here's my story in brief. I am 56, diagnosed with HIV in 2001, and have been asymptomatic. Started taking HIV meds this year because my t-cells decreased. The prostate diagnosis is hard, and sort of knocked me on my ass today, but after the shock of HIV, everything else seem to pale. So far all i know about prostate is that my Gleason is 3+4=7. Am not completely sure i understand what this means.

Am glad to get reference on HIV and prostate cancer. I don;t know the connection. Frankly i don't know too much about anything right now. As for the Gleason, I need to hear again whether is was 3+4 or 4+3. The doctor told me all of this rather quickly on phone and I was trying to write at the same time I was shaking my head in disbelief. This has been a very complicated year for me so far. Many problems during this year. And now this.

I am scheduled to go to China at end of Oct. Is there any reason why i should cancel this trip?

Welcome to the forum.  I suspect that dealing with HIV was and is more difficult than what you'll be dealing with regarding the prostate cancer.  For many of us, the cancer can be removed completely and the problem is, essentially, resolved.  Period. 

I found it helpful, when I located this website, to spend some time reading through the many prior and archived discussions.  The information is real time and first hand from people dealing with this same challenge.  My Urologist/surgeon and the hospital provided me with a lot of printed information explaining what would be happening and that, too, was very helpful.  And, in your community there may be a prostate cancer support group - if talking with others face to face is something you think will be beneficial. 

Before my surgery I went to Rio de Janeiro for a week - to use my vacation time and to take advantage of a free frequent flier ticket I'd earned.  I was uncertain about what I'd be able to do, and when I'd be able to do it, post-surgery . . . and I'm glad I took that trip. 

My own reaction to my diagnosis and the prostate removal (I chose removal via the da Vinci robotic method) was relaxed because at the end of the day there's nothing I can do about this:  I had the cancer, it was diagnosed early, I located an excellent specialist experienced in such a removal procedure, and nothing I could do was going to affect the outcome.  I was very relaxed.

Post-op I've learned that my Gleason score was a little higher, and the cancer present in a larger quantity, than the biopsy revealed - and I'm very satisfied that I acted quickly to remove the threats from my body.  I felt good pre-diagnosis, felt nothing during surgery, and feel good post-op and have returned to work.  Incontenence is an issue I've not gotten under control (yesterday was a particularly bad day) and the "ED" matter is something which, at this point, is of little concern to me.

You've found the spot to come to on the www for solid information about prostate cancer - ask your questions, any questions, and it's likely a chorus of respondents who've faces similar issues will share their/our experiences.

Mavica

 

Welcome to HW. Like so many others have already said, I am sorry for your dx, but glad you found us. This site is incredible for support. You are the first PC and HIV patient I have seen, but maybe your voice will encourage other's to join. Please stick around as you sort through this. My father was dx in July of 2007 and had the surgery in August of 07. He decided before his surgery he wanted to go on a long motorcycle ride, which he did and loved. It was important for him to clear his head and enjoy life, when everything surrounding him at the time was cancer. Long story long, I imagine if every thing else is fine, you should be able to go to China. You most likely will not be starting treatment then anyways. PC is very curable if caught early. Try to stay positive and please stick around! Welcome!

Welcome Banker -

Yeah, the news is a shock, isn’t it? I’m sure it threw all of us for a loop for awhile; I know it did me. However, Selmer’s advice concerning taking in all the information slowly is some of the best I’ve advice I’ve heard here or anyplace else. There are a ton of links to information on this site. And take your trip to China!

I am very grateful for all of these responses. I will indeed ask questions and share my thought with you. I went to see my internist today to tell the news and get his read on the matter. His counsel was similar to all of yours. He reiterated his support for my urologist and suggested that i get other opinions if i feel the need. My internist doc has gotten very accustomed to dealing with me. Perhaps the best advice from him and all of you is to remember to stay positive.

The most difficult AND best part of today was that I woke up, still with cancer, but I was ok. I was able to get through most of the day without worrying. I know eventually i have to plan for treatment. And i'll have to wonder whether the HIV will kill me before the prostate cancer. This is a fact i have to consider when thinking about treatment. My doc reminded me that HIV is a chronic disease and life expectancy could be about 25 years. We'll see. In general, dealing with HIV has been a challenge...mostly dealing with the stigma and isolation and fear. At this point I have no symptom.

Truth is, most of what i need to do is to talk out loud about stuff. I have rarely ever talked about my illness...and this anonymous forum provides a wonderful opportunity to just let go. And i will. Again, thanks for your notes. Am looking forward to reading and learning from your experiences.

Lastly, I am going to China!

    Hey Banker,  Sorry to have to welcome you to the club.  We are here if you need someone to lean on or talk too.  Wish you all the best in your search and treatment options.

    KW

Here's what's giving me the willies as i read other notes:
1. placing a catheter in penis and removing it.
2. any additional prostate probing--I hated the biopsies and was perfectly miserable through the procedures. The third time i had it done, i took pain medication that i had left over prior to the exam. This calmed me down considerably.
3. being in a MRI machine for any length of time. I have to schedule one of these as part of my initial follow up, and i feel anxious just at the thought of it.

I am sure this list will grow. For now, I would be very interested in any ways that you have learned to deal with these issues.

I worried about the catheter also. It went in while I was out so wasn't an issue... Worrried over that for nothing....   Coming out wouldn't have been bad either if I hadn't worried about it.....

I had a drain tube in my side and I worried about removing that also. (Yes you are right... I worry about lots of things...) When the doctor removed it, I wasn't sure why I worried. It was almost funny. Simply a strange feeling as you normally don't feel things inside of you. I kind of enjoyed it in a way.

In other words, when a worry wart like me can do it, you can too. In fact, I'll be rooting you on, just let me know when and what to cheer you on for.

I never had anymore prostate "probing" after the biospy so wasn't an issue for me. And the way my doc did the biopsy it wasn't bad really either.

I have been in a MRI and CT scanner several times. Was not a problem except I worried about laying real still. (See I worried about that too.) But no one ever had to repeat anything so I must have worried about that for nothing also......

If you ever need any help in worrying, let me know. I am excellent in wasting time worrying .

Worrying?? I am a pro at it. In fact, it is just down right fearful thinking about anybody messing with the "family heirloom" (the equipment down there!). It all belongs to me... alone! But this disease requires me to give up all modesty, and I must consider procedures that make my skn crawl. Things like fingers, probes, tubes going in my private places make me crazy.

I guess the next trauma comes from thinking that "the equipment" might not work anymore after some of the treatment procedures. Ok..i am not ready to go there yet. Just not ready! AHHHH...the stress of being a male!! THE STRESS!!!

Even if the equipment doesn't work immediately after treatment, chances are it will be only temporary. As a longer term sufferer from ED, I find there are aids (injections and pump) that work very effectively. Sex is just as good as before, but different. Oh, and no risk of fathering unwanted children

Banker, You sound strong on your last post. I saw a quote once: "Worrying pretends to be important" My brother has been HIV positive since 1985. He just turned fifty this past August. He is well and happy, he takes his meds faithfully, and lives a good life. You will live well and strong with HIV....and also the prostate cancer. It is amazing what human beings can adjust to...and live strong and happy.... You were lucky to have found this site. It is extremely helpful and even fun at times.....!!Di