New guy saying hello

Hello forum!!

Well, I can't say that I'm totally happy to be here, but I am certainly glad I found such a caring and helpful board to offer support and share their experiences. Please don't take offense!

Ok, here it goes...

42 years old. No family history of any cancer whatsoever. Diagnosed on 4/6 w/PC after rising PSA (recent in 2/11 to 4.8) and a positive biopsy. 5 out of 12 sticks were positive, with 4 showing a Gleason 6 (3+3) and 1 with a 7 (3+4) with perineural invasion. Just had my bone scan, PSA and pelvic CT on 4/15. Will get full report with my uro on Thursday night. Fingers crossed that everything else came back negative.

So, like most of you after diagnosis, I've been doing a ton of research, and investigating all my options. I've read about 4 books on PC including "Invasion of the P snatchers" and several others. I've found them quite educational and a tad bit confusing as well. I now know why I never went to medical school!

So, in my explorations of treatments, I'm obviously run across RP, radiation and hormones. Have a consultation scheduled w/Dr. Samadi in NY once I meet w/the Uro, and will also look at UPenn Cancer center for proton treatment. Has anyone here had experience w/proton therapies, as I don't see them talked about much, except at brotherhood of the balloon site. It sounds like it has a as good an efficacy as other treatments with limited side effects. Would love to hear from other here who've gone through it.

My biggest concerns are QOL and potential recurrence.

Oh, the best part about this whole process is that I recently was laid off at the end of March. 1 week later I get the news of my PC. Now I'm looking for Dr's AND a job. Not sure how that's going to work out w/various treatment schedules, downtime, etc. Ugh...

wishing you good health,

-Brian

Hi Brain, well, you've certainly ramped up your stress meter this past month! PCa and laid off all within a week. Geeeeesh!

However, this is a great place to come for PCa advice, as you've found out, and you write so well who knows --- there may just be a job offer lurking in the weeds here as well.

Others far better qualified than I will soon chime in with medical wisdom, but I did want to welcome you, and wish you all the best.

Sheldon AKA Sleepless

Brian,

As always, we hate to see new members here, but Welcome just the same.

Lots of folks will chime in with ideas/suggections as to getting opinions. I will suggest that you look at the top of the forum for the "really useful" thread, which is a conglomeration of experience from all of us.

Please get multiple opinions if you can before making any decisions. Your one G 3+4 takes you a step out of the "indolent" category, in my non-medical opinion. I'll suggest you read a book that was linked here in the past from Australia, and focus on the treatment / possible side effects in chapter 6:

----

http://purl.library.usyd.edu.au/sup/9781920899684

It takes you to an Australian university for a book some professors have written. Down at the bottom of the text there is a place to click to download the pdf file at no cost. I ran all the requisite security checks at the time, and it came up as legitimate.

I wish someone had given me such a book when I was diagnosed. It should be said that nothing in the book would have changed any decision I made, but some of the information reinforces what I have learned by consolidating many more documents. The data is based on Australia, so there are some skewed numbers regarding DaVinci, as they have very few DaVinci robots there. Chapters 5 and 6 are the highlights of actual treatment choices. I read the whole thing.

Worthwhile read, in my opinion.

- - - 

I'm a surgery guy, so have my bias, but if I can be of any “non-medical opinion” help, ask.

Proton is limited in availability, so there are less posts just by default.

 

Brian, welcome aboard.

No offense taken, this is the one club we would rather people not have to join, but delighted you found us.

Sounds like you are already doing your homework and getting opinions and learning what you can about this nasty cancer.

Like you, I was dx with my PC exactly a month to day after I was laid off from perhaps the best job of my life. 2 1/2 years later, still out of work. In my case, not a lack of opportunity, I have had many difficulties in my PC journey, and I am still too disabled to work.

Good luck to you on both fronts. Wishing you only the best.

David in SC

Hi Brian, there are many good strategies for dealing with the external world. Two are; a) you play all your cards close to your vest because the world is a hostile place and if the "enemy" has knowledge they'll use it against you, and b) you share openly with all because people are basically good and the more they know about you, the more they can help you.

The trick, of course, is a balance between "a" and "b" and then making adjustments for specific situations.

I'd suggest that you not bring it up in a first interview --- unless it just seems the right thing to do with a particular person --- but not go beyond a second interview without putting it on the table. Also, before putting it out, I think it would be better to know exactly what treatment you're going to do and what time impact that will have on your availability.

Also, don't let a desire to take a "perfect" job influence your treatment decision. Surgery may require a longer time off, radiation may mess up part of a day for weeks --- go for the treatment you feel is right for you, not the one you think will fit best with a job.

Sometimes the wisdom of my advice amazes even me --- and I'm used to my wonderfulness (and modesty.)

Sheldon AKA Sleepless

Brian -
- sorry about the job and the diagnosis - I lost my job a few weeks before my diagnosis too.
- you have done a lot of research and already have had a lot of support and patient-to-patient information and concern here at HW.
- you will get through this mess and this confusing disease - it is difficult at times to try to balance off long-term and short-term goals -
-right now, my advice is - keep learning - keep listening to your growing awareness about your body - and embrace each day.
-wishing you all the best.
hugs,
BRONSON

That was pretty choice, Sheldon, I can feel your glow from South Carolina

I'm in a similar situation . I just had my first meeting after having my biopsy and bone scan with my urologist last week. I am lining up a second opinion at the Mayo. I want to look at all my options. I guess that is the good news that you have options and that's the bad news too. Just take your time and be comfortable with whatever you decide. It's a lot to take in. You will get good advise and opinions here.

As far as your job seeking and disclosing your PC, I would not disclose it. Jobs are just too difficult to get these days and so much competition that I would not want them to select another candidate when you may be the best fit for the job other than having PC. You also don't know what treatment you may decide upon. You may decide on radiation and being out of work may not be a factor. I would not let that influence your decision when choosing your treatment though. I went through this when I was looking for a job two years ago and needed a shoulder operation for a rotator cuff. I was just about to get the operation when I had the interview. I wanted to be up front and say something but I did not say anything. I got the job. After I got the job I said I may need an operation. Turns out I never did have the operation. So, you never know. I say get the job and then deal with it. As hard as it can be, sometimes ya got to think of yourself first.

Welcome Brian.

Tough call on the disclosure question....can't add anything to Sheldon's post.

You will get a lot of different perspectives here which will help you make a treatment decision. I actually changed my mind on treatment after spending some time here. Learn all you can and ask a ton of questions....particularly about side effects.

Best wishes on your journey.

Joe

Hi Brian

As a fellow NJ resident and huge Bruce fan , love the Big Man reference to CC.

If you are looking for an opinion on surgery, I highly suggest that you consider making an appt with Dr David Lee at U of P/Penn Presby  .  He did my surgery as well as a few others on this forum and I cant say enough good things about him.

Best of luck

Ray