Just Diagnosed

Hi John, it's a scary day when you start thinking about mortality.  I was 49 at my diagnosis, and looking back I experienced feelings of "cancer hysteria" that are quite natural in our society where the word "cancer" is associated with images of suffering and death. 

Several years later, I have a much different understanding of prostate cancer.  PC is really two, or maybe three, different diseases.  There certainly are men with uncommon strains of aggressive PC who will and do die from the disease, but it turns out to be a small percentage of the total number of people who are diagnosed with PC. 

The reality is that 50% of 50-year olds have been found (in autopsy studies of men who died accidently) to have PC...the key difference between you and them before they died is that you have had a set of circumstances that led to a biopsy, and they didn't.

PC is one of the most common and least lethal of all cancers, producing a large population of survivors...you've just joined that population. 

Keep your head on.  Easy for me to say from my vantage point, but don't panic.  You have nothing in the case characteristics you provided here to indicate an aggressive case.  Take time to educate yourself.

Welcome...and welcome to 49.

Hi John:

I don't think you sound hysterical at all. You're probably down right now and that's perfectly normal.

You've already been given some results, many people have th eslides sent for a second opinion. This can be important as a second opinion might, as was my case, give you different results which in turn might allow/require you to rethink your treatment and/or surveillance strategy.

This is no fun, and we're way too young for this, but you'll be fine. This is the hardest stage of the process in my opinion. Things will get easier as you explore your options and devise a strategy.

I was in Toronto last year and noticed how the city was friendly towards PCa issues. Seemed like every other store had literature on it and ways to donate. It was MOvember when I was there. If you're the type that benefits from it, I bet you can find some support groups up there.

Happy birthday. Not the present you wanted,huh?

It's a shock for sure. I remember being stunned for a few days and not knowing what to do. So far sounds like you doing okay. The key now is to learn all you can before you have to decide on a treatment. I'd expect that with the report you gave, you'd have plenty of choices on treatment - surgery, radiation.

I found telling people to be an interesting experience. Most have no idea how to respond and a few will panic. I found that the more I could explain to them the easier the conversation is. The 'c' word is loaded in our society and people often jump to the worst conclusion when you say, "prostate cancer" and mentally put you in the hospice program when we know that is the furthest from what is really going to happen. Yes, you life has now changed but I suspect you'll still be here long enough to retire and more.

Keep us up to date on your progress and as always ask all the questions you want.
All the best,
Andrew

Welcome.
Did you say what your PSA was? That can affect the prognosis.
With treatment you are likely to live for a decade at least and probably much much more.
You will probably have to chose between surgery and radiation, either seed or beam.
I don't know much about the Canadian system but hope it offers you the treatment your chose.
There are also a lot of new drugs and treatments being developed that might improve the outlook.
Good luck to you.....Robert

Toronto Guy - welcome and sorry you have to be here, but you've landed in a good spot for information. I was Dx'd in early July and just had my LDR Brachy a week ago today. Hearing you have cancer is the worst news one can imagine - and you will go through the stages of fear, denial, anger and so on. As others have said, keep your head on straight and DO NOT rush into anything. From the numbers you've shared thus far you have time. As a suggestion, look at everyone's "signature" line for reference on the kinds of stats we like to share - the more info you provide the more we all can try to help.

I am not familiar with Dr. Finelli, but in general a good approach is to seek out multiple opinions from surgeons and radiologists. I would also get a 2nd read on your biopsy slides - Bostwick Labs seems to be highly recommended and there are others, but a 2nd opinion is always a good thing.

I would also encourage you to do some intense research, on the internet, on forums such as these, literature including Dr. Patrick Walsh's "Guide to Surviving Prostate Cancer" and Strums and Scholz' "Invasion of the Prostate Snatchters" that I personally found incredibly helpful. Look for case studies and include them in your basket of knowledge gathering. To that end I will offer you copies of studies I have gathered and purchased that will be helpful, just shoot me an e-mail and I'll reply with attachments. When you add all of this up with input from the medical faculties I think you will start to feel better as you will be in a position of understanding and focusing on treatment that is best for YOU.

There are lots of good folks out here that have "been there, done that" - that helped me immensely along my journey.

My best to you, let me/us know what we can do to help.

Thanks for your comments....while I'm probably not as knowledgeable as the vast majority of you on PCa, I have done some research. Reading about your experiences has helped. I haven't really discussed PCa with anyone outside of my girlfriend and a colleague who just had his prostate removed in March. and it helps to talk in here.

Casey-Thanks. I don't think I'm panicking, but I was anxious about my biopsy results and now I'm anxious about the CT scan. I sure hope I don't have an aggressive type of cancer.

Is it normal to have a CT scan in every diagnosis? I'm not sure my colleague had one.

Anxious in Florida- Thanks for your wishes. You're right, I don't want to be a member of this club.

davidg- I'm not sure how second opinions work here in Ontario Canada. Not sure it's possible seeing as how we have socialized healthcare. Not sure if I'd have to pay for it. In any case, to be honest with you, I'm almost 100% in favour of surgery to have it removed. Uro has set me up with a surgeon who is supposed to have experience with DaVinci surgery. I'll think about a second opinion, but from what I've read so far, for someone my age with my Gleason score, surgery is recommended. Oh, and I'm hoping this site will be my support group. Too lazy to actually go out to meetings somewhere.

Gleason6- See above for my thoughts on a second opinion. Will definitely do more research. Regarding treatment options, my Uro discussed 3. AS...he didn't think tha was a good idea and neither do I. No way I can remain sane. Brachytherapy...according to him, it's not covered under our socialized healthcare plan (OHIP) in Gleason scores of 7 or more because it's proved to be ineffective. I didn't know that.....can anyone from Ontario comment? I have private insurance through my employer, but I haven't researched what it covers.

InTheShop- That's why I like this site. You all know it's not necessarily a death sentence. It's funny that I'm calmer than I expected right now. I don't know how I'll feel tomorrow. Hungover, that's for sure. Don't get me wrong, I'm still concerned, especially about that CT scan and the possible side-effects (ED and incontinence) of surgery, but for some reason I'm not panicking. With my PSA numbers of 10.26 (thought it was 10.24, but not much difference is there?) and rising (from 8.12 in 1 month), I kinda knew something was wrong. Was hoping it was an infection, but no such luck. At least I don't have to go through another year of my PSA rising and worrying about cancer spreading uncontrollably. Hopefully some positive action will be taken soon.

Keysersose- What were your impressions of Dr. Finelli? Why did you choose open surgery? fyi that my Uro doesn't perform surgery (good thing since he looks to be about 95 yrs old), but he will be present during the surgery.

robertcool- Live for a decade??? No way....I'm counting on another 35 years at least.....my last PSA in August was 10.26, rising from 8.12 in July and 7.97 in June. Uro told me that in all likeliehood, I'll see 85 without complications....I'm holding on to that prognosis.

Thanks for all your support guys....It really means a lot to me that you've commented. If only to keep my mind off worrying.......

I wish you all the best.

John

no worries David.....appreciate the advice and will take it under advisement....although I would hope you would have said "what if the Gleason was downgraded to 1" .... :)

as a quick side note... 2nd opinions in Canada... in my case... I moved from the first uro to someone who specialized in Pca. There was no problem, just speak up. And since, my current Uro mentioned that anything I wanted as far as my case reviewed by anyone in the major US cancer centers he had no problem and would arrange anything I wanted. I believe his words were "there is no ego in a fight against cancer". We didn't get into cost but I had the impression it would be minimal.

john, welcome here. i saw nothing in your original post that denoted "panic", so not sure why that was said.

sounds like you are doing all the right things. even though your gleason 7 was the least, most doctors would treat you as a gleason 7, which is far more aggressive then a gleason 6. at your age, surgery would be a good pick, but the gamble comes with ED and incontinence, that even with a great surgeon, there just aren't any guarantees. i had open surgery myself, and never had a day of ED, but i seem to be in a rare group, i was 56 at the time. incontinence wasnt really an issue, as i had the opposite problem, constant stricture issues to where i couldn't go.

keep doing your home work, and once you make you decision, stick to it, and hope for the best.

wishing you the best of luck as you begin your unwanted PC journey, we are here for you.

david in s.c.

John,

Sorry to hear of your diagnosis.
I too, like many others here suggest you take the time to investigate all your options. Reading some of your previous posts I see your last PSA was over 10. Something you should try to determine with your doctors is if the cancer is still confined to the prostate or if their may be extracapsular extension. If this is the case it is still a very treatable disease, but you would need to fully investigate other treatment options.

Hello,
Just found out on Sep.17 I have prostate cancer. I had the bone scan, CT scan, and biopsy done all the same day. My psa # is at 19.4. Gleason a 3+4. Tumor stage T1cNxMx.

I just told my kids friday night. Have to tell my mother and sister today (one sister knows) .

My wife sent me this link. So I decided give it a look see. Lot of info on here.
Not sure what to say right now..it's all just starting sink in I guess.

Nice site.

John,

Just about a year ago today I started intently reading this and other sites after my biopsy came back with a finding of PC. I found it invaluable not only for answers, but to discover what I needed to learn more about. Having done all the rounds of consultations I went with robotic surgery last January. I've recovered well. No incontinence and slowly improving on the ED front. A year of being a lot less "peppy" but that's improving too.

I am lucky to have a brother-in-law who is an excellent physician and medical professor. He was able to explain some of the medical terms and tests and how to weigh the pluses and minuses of all the options. One thing he stressed is there may not always be a "right" medical choice with PC, but there can be a better choice for the patient given their situation, personality, tolerance for risk, lifestyle, etc. Some people (like me) are not good at putting things at the back of their mind - so surgery with it's more instant feedback was better for me. Plus I was in a position where I could miss work and recover at a slow pace. Others might have better tolerance for watchful waiting or radiation therapies. Or they might not be in a position to miss work which surgery will require. One thing I learned from my experience - there are few definitive medical answers much as we would all like to have them. Choosing a direction that you have confidence in, that reduces your stress, and that fits into your personal and family situation, is something you can have some control over.

Good luck with whatever path you travel. And know that there are many people out there, like the folks on this site, who can be incredibly helpful as you deal with this.

Larry
- 55 years old. Diagnosed Sept. 2011. Gleason 3+3 Robotic prostatectomy Jan 2012. (3+4 Gleason - pathology post surgery). Margins clean. PSA - < 0.01 6/2012 & 9/2012