Newly Diagnosed : I was diagnosed... - Prostate Cancer N...

Prostate Cancer Network

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Newly Diagnosed

SonomaGuy
SonomaGuy

I was diagnosed 2 weeks ago and as u can imagine it’s been quite a roller coaster of info and emotions. I'm 55 and recently divorced. (and a little overwhelmed.) Post biopsy results are as follows:

(1) PSA level: 5.0

(2) Gleason score: 3+3

(3) Stage: T1c

I haven't seen the pathology report yet, but have requested it. My Urologist said very low risk cancer, 1% or less of spreading and contained in the prostate. All things considered I guess this is good news? I have not had a detailed follow up yet with options but as you can imagine Ive been researching and all treatments sounds frightening. My urologist think Active surveillance might be ok initially. Is anyone or on AS or was on AS and how long have they been so?

23 Replies
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That is as good as the news can get with prostate cancer. In the longest-running clinical trial of active surveillance in North America, over half of all low-risk men were still able to stay on it without progression after 20 years so far.

It's a good idea to have a confirmatory mpMRI-targeted biopsy within a year. You may want to consult with Matthew Cooperberg at UCSF. They have an excellent program, and it's better to register with a well-designed program than to try to do it yourself.

You may find the following patient guidelines helpful. Active surveillance is covered on pp 32-33.

nccn.org/patients/guideline...

There is no rush to decide or do anything. For now, decide not to decide. Please feel free to ask questions.

BTW- I was diagnosed at age 57 right after a break-up of a long-term relationship. The constant buzzing of my thoughts, coupled with anxiety and depression almost drove me crazy. I went to see a psychotherapist who taught me how to practice mindfulness. It took me 3 months of daily practice until it became habitual. Now I can't imagine life without it.

But all this is still a fresh wound to you, and it will take some time to get over the initial shock. We've all been there. I hope you are being kind to yourself and patient with yourself. If you can't sleep, talk to your doctor about some sleeping pills to get you over the hump. It will only get worse if you don't sleep.

SonomaGuy
SonomaGuy in reply to Tall_Allen

Thank you for responding and the reassuring words.

withhope
withhope in reply to Tall_Allen

The peace of mind is as important as the disease. Thanks for sharing.

Steve507
Steve507 in reply to Tall_Allen

G 3+3, PSA 5, T1c. That was my initial clinical diagnosis in Nov 2018 at 50 years. Second opinion on biopsy had me at 3+4.

Your disease appears to be very mild, even indolent, at first blush. Take your time, get another opinion and be proactive. Listen to Allen at least until you've scaled the learning curve on your disease.

Welcome to your new road trip.

That's a pretty good report. Do you have any symptoms? What caused you to see a urologist?

SonomaGuy
SonomaGuy in reply to Magnus1964

No symptoms. During a routine physical for work my doctor included a PSA in the bloodwork, which showed a slight elevation I think 3.4. So in watching it over rate past few years it started bouncing around up and down but trending up wards (which corresponded to the time with a new boyfriend) and after 4 years when it hit 5 I agreed to see a urologist.

Any other guys up in the SF north bay - Sonoma County - on here as well? I'm feeling pretty alone up here.

Above all, take your time, no rush, and learn all you can. I was in a very similar boat as you 10 years ago except younger (44), but a lot has changed since then. My Gleason score was 3+4 and because of my age I was strongly encouraged by several doctors to get an RP, so I did. My prostate biopsy downgraded my score to 6. Everything looked great, clean margins etc., yet my cancer reoccurred. Two years later prostate cancer research exploded, attitudes started changing, and had I been diagnosed then I would have waited to treat it and gotten another biopsy at the minimum, just like Tall Allen said. It is good you have this knowledge now, but it doesn't mean your life has to change in a big way now, or maybe ever.

Take care, it is good you found us. Sorry I don't live in that area, I call Atlanta home.

Bill

Thank you for your message, Billy. I'm very sorry to hear about your PC and RP. You did what was best at the time and considering your recurrence, probably the right decision. But then, what do I know? I'm only a couple weeks into this and there is so much coming at me all at once You message was very welcome and I appreciate the encouragement. Thank you.

Maybe one day, you'll find yourself in California Wine Country and we can have a glass of wine together.

Mark

Glad you found this site. I was diagnosed with prostate cancer in 2016 Gleason score of 3 + 3. Have been on active surveillance since. I do a PSA check every 3 months. Just had blood drawn yesterday. Have an appointment December 3 with my Urologist. At the last appointment he suggested to go every 6 months for PSA check but I told him I was not comfortable with that and preferred every 3. We will see after this one. There is a lot of great information here. Remember you are not alone in this journey. There is a lot of support and great information here.

Hello SonomaGuy.I'm 56 and received my diagnosis last Wednesday so I TOTALLY understand all your emotions. I've got a Gleason score of 7 (4 + 3) and a PSA of 7.4 but I am also classified as Stage 1. The relevance here to your question is that they first noticed my PSA was elevated about two and a half years ago and I have effectively been on AS ever since then, with six-monthly blood tests at my GP surgery and an MRI scan. As my PSA has increased they said it was time to get a biopsy and sure enough there is cancer there, which was only suspected previously. Anyway I am at the stage where I have got to have treatment now and as you say the options aren't great. If I were in your shoes I would take your consultants advice and enjoy a few years of being able to get on with your life without the unpleasantries of treatment. As long as they are monitoring you they will tell you when it is time to act so you have that safety net. If your cancer is only 3 + 3 you may be able to go some considerable time before you need treatment - definitely the best option in my view! Good luck in whatever you decide.

Best,

Allan.

SonomaGuy
SonomaGuy in reply to Avanti123

Thank you for sharing your story and the words of encouragement

Get the Prostate Cancer Foundation's patient guide at pcf.org. It is an excellent resource guide for newly diagnosed.

Excellent guide! There is also a lot of good info on the American Urologist Association site. While written more for the physician, I found it very useful

Good morning Sonoma guy, sorry to hear about your cancer. I am 53 years old and was in your exact position 9 months ago. My biopsy showed one cancer slide out of the 12 slides taken and it was a slow growing just like yours and my Gleason was a 6. When I started looking at the treatment scenarios I too was overwhelmed with the possibilities of horrible long-term side effects. My urologist suggested I take the wait and see approach. I then decided to talk to an oncologist specializing in prostate cancer. He pointed out several issues with the wait and see approach. First of all you will probably be expected to get a biopsy every year. That in itself is not pleasant although it is not that big a deal either. My oncologist pointed out that you can get some pretty serious infections from biopsies. Also at our age we have a long time to live hopefully and there's the remote chance that it could spread somewhere else. I made the decision to have it treated. I did bracherapy (seeding) 5 months ago. I figured I was going to need to have it treated sooner or later so why go through years of biopsies and knowing it's in my body. So let's jump to where I am today. The last five months I have had a terrible time urinating. Not everybody gets this side effect but I did. My urination is hard to get started then I pee for about five seconds and my bladder has a spasm then I have to restart it. When I urinate it is painful with a burning sensation. To put it in perspective for you I was mowing my yard a couple weeks ago and got stung by two wasp and my first thought was that didn't hurt as much as taking a piss. I am unable to empty my bladder so I end up having to pee very frequently. This includes getting up 3 to 5 times a night generally every hour and a half to 2 hours. The urge to urinate also comes on very quickly. An example of this is if I go for a car ride to a store I feel okay as long as I'm sitting down but as soon as I get out of the car I feel the incredible erge to pee. So first thing I have to do is find a bathroom and then when I get there I can't get my flow started and it is painful. I take flomax to help but it is certainly no cure. I want to point out and not everybody gets side effects but when you make your decision don't assume that you won't.

I have gone through a divorce and I know how emotionally taxing that can be. I have sinse remarried and have a beautiful loving marriage but I still go through times when I get pretty sad. I think to myself how hard it would be to do this alone or overwhelmed as you say you are. I think maybe I could have waited two or three years and continued a normal life before having this treatment done. I'm not sorry I had it treated but it has changed my life. My problem seems to be my prostate is very swollen and pinching off my urethra. So if you already have BPH this is something to think about. I didn't have any urinary problems before the seeding. I think as the radiation wears off my problem will get better but I just don't know.

I don't know your situation other than you said you are overwhelmed. Since this is not an urgent situation and no decision needs to be made today. my advice to you is that you make sure you're in a good place mentally before you have it treated. Work on yourself, work on your relationships. Get a second or third opinion and talk to an oncologist maybe more than one oncologist until you are very confident with a decision.

I hope this helps and I have learned a lot by going through it so if you have any questions at all or want to talk feel free to continue this conversation and I can give you my perspective and experience.

Thank you for sharing your story with me. I very much appreciate it. I’m sorry about your path and I do hope it will get better. And Its encouraging to hear you’ve found love again. I hope I can, one day, do so as well.

As others have said: welcome to a group that no one wants to belong to. Sorry for your diagnosis but, as Tall_Allen said, yours is the best of the worse diagnosis (I was in the same position as you in 2011). I was in the AS program at Hopkins; blood work, DRE and other forms of monitoring became my routine.

As time passed, my PSA rose and, finally, a targeted MRI (I recommend it) and change in biopsy (from 3+3 to 3+4) caused my uro to say, "it's time to pull the trigger" (that's a medical expression. LOL). I did (but not at Hopkins).

During the 7 years of AS, I learned as much as I could about PCa - read, watched videos of medical procedures (it's amazing what you can find on YouTube and on medical sites), attended conferences, chatted with guys on this and other sites - so I think I made a fairly well informed decision about my treatment. For whatever it's worth, I chose radiation and ADT: external beam + brachy boost + ADT. (Btw, you'll learn the meaning of the alphabet soup of abbreviations. Tall_Allen has a great site that includes a lot of helpful ino, including the definitions of many of the abbreviations you'll see here).

The procedures themselves were fairly unremarkable (don't get me wrong: the procedures were uneventful but I was scared as hell about all the "what ifs.") But, the feelings and emotional roller coaster were devastating; the ADT nearly did me in. I finally realized that much of what I was feeling was grief. In a very short time, I lost much of what was important to me: self imagine as a man (the wt gain and other ADT side effects were awful). The sense of loss was penetrating. I hope your experience is different than mine (I think you'll find comfort in the incredible variety of experiences of the men here).

Anyhoo, it's been two years since the treatments ended. PSA has remained <0.1 and T is returning - docs said it would return in 9-12 mos. Not so. Try 18 mos and it's still very low). Some side effects continue (wt gain, genital atrophy, impact upon BP and joints, etc.). But we soldier on!

Give yourself time to absorb what's happening to you. Take your time in making any kind of treatment decision (cuz once it's done, your life WILL change). And, know that you're not alone.

If it's not inappropriate given all that's occurring, Happy Thanksgiving.

EdinBaltimore

SonomaGuy
SonomaGuy in reply to EdinBmore

Thank you for sharing with me. Happy Thanksgiving.

all great comments, all i would add is always get 2nd, possibly 3rd opinions on ALL procedures such as biopsy readings ,MRI, readings Bone scan . these are very subjective .... everything i have had 2 biopsy , went to Epstein, at Johns Hopkins, and my targeted MRI and bone scan had it's reading twice locally ,

what to say that hasn't been said - other than the people here " get it " and the support is great. I was diagnosed in Feb 2017 - had an awful Urologist. Found my wonderful Oncologist in Dec 17. I which I had this group back then. Lots of good energy here and amazing info. Ask a million questions and try to get regular hugs and affection. You will find virtual hugs here.Best

My husband did unintentional AS (not really because he was having PSA tests and biopsies every year) from 2003 through 2014. The PCa was hiding in a very big prostate. Other than BPH, he had a very active and healthy 11 years before any kind of treatment for PCa. Six years, two surgeries, and 39 RT later, he's undetectable with the PCa since early August of 2019. The radiation did cause an aggressive form of CLL, though, so we're still fighting hard.

My initial diagnosis was T1c. The 'c' from the T1 in my case indicated a cancerous core on both sides of the gland. A second opinion will give you clarity for direction. One radio oncologist I saw offered AS as an option, but I decided to be proactive. I've had nearly no side effects post RP, thank God. I wish I had found this site when I initially learned of cancerous biopsy cores. 2nd biopsy opinions many times show more aggressive Gleason rather than less aggressive.

Either way, sounds favorable. Best to you!

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