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Posted 12/2/2013 10:25 PM (GMT 0)
Hello to all,

I was diagnosed in June with HGPIN and urologist suggested repeat biopsy. In Sept I was diagnosed positive for PCa (1 out of 14 cores in one of the two sidelobes - a total of 28 samples were taken). I joined your forum for support as I need as much info I can get. Note that I am also a new dad (8mnths boy) and after this great joy , came this but I have to live with it.

My medical history is :
age 41
diagnosed with HGPIN June 2013, PSA 1,06 after some incidents of hematospermia (till today the urologist supports it was irrelevant to my PCa - we were just lucky to find it he said)

Repeat biopsy Sept 2013 positive PCa 1 /14 cores (28 cores in total) PSA 0,95, Gleason Score 3+3=6
Oncologist suggested active surveilance, PSA on a 3month basis and biopsy on a 6month basis for the time being. All scans (bone/ CT) show nothing.

In a week I will meet a new urologist suggested by my oncologist. One thing that worries me too much is that I still have hematospermia and I would like to know if that is normal after my last biopsy (early Sept - 3 months).

It seems that active surveilance has a great psychological cost and I may also seek assistance by a therapist in order to get to deal with it more easy.

I hope I give you an idea of my situation. I wish the best for you all !
Posted 12/2/2013 10:39 PM (GMT 0)
Welcome to HW. Sorry you need to be here.

Sounds like you've got a good plan going there. with your numbers AS makes a lot of sense. You could go for years and not need any treatment. Support from your medical team will help you get through that.

still seeing blood this far after a biopsy wouldn't be what I'd expect. Good to get that checked out by a Uro.

Seems to me that is far more worrying than the small presence of G6 PC.

You're doing fine, keep up the PSA tests and let us know what the Uro says.
Andrew
Posted 12/2/2013 11:29 PM (GMT 0)
Welcome and good luck to you, sorry you are so young to be dealing with this.

I think your doctors advice is sound based on what you wrote, AS is a good starting point to you, if and only if later you both feel that treatment is needed, then all your primary treatment options should be open to you.

During this time, it would be great to learn as much as you can, in case you have to make a future treatment decision.

We are here for you,

David
Posted 12/2/2013 11:51 PM (GMT 0)
Hope,

Glad you found this group and I hope you stay and let us know how you are doing. We have at least 2 things in common...we have PC and we were both diagnosed at 41...But now I am an old man (kidding) - Soon to be 46! Be well....
Posted 12/3/2013 2:30 AM (GMT 0)
Glad you found this place. It has certainly helped me through my journey. There are a ton of good and knowledgeable people hear and all have been exactly where you are right now. I too found my way here way too early, but as you know cancer is not an age discriminator. Anyway, as far as The hematospermia goes, my biopsy doc said it would last about a month and it darn near did to the day. A little confused about your medical history that you stated, you were having blood in semen and that is why you had biopsy or is that a result of biopsy? The emotional toll of AS you speak of is very real and something hopefully something you can deal with if you decide that path. With your stats you "should" be fine. I am quite the worrier at times and once I was diagnosed, prostate cancer was the first thing I thought of when I woke up and the last thing I thought of before I went to sleep while I was wading through my options. Eventually, it became clear what the best option for "me" was at 39 years old. There is absolutely no doubt that I would have been fine with AS for some time. But I did not truly know this until my prostate was removed and disected. How long I would have been able to stay on AS no one knows for sure but I do know it would have been on my mind
way too much. At your age and low risk I am kind of surprised AS was suggested. I talked to several docs and none recommended this option, only stated that it was an option. Basically all stated that I would need treatment eventually and with my age I would be better equipped to deal with side effects now.
Posted 12/3/2013 2:52 AM (GMT 0)
I wish you the best, this is a great place to stay in touch with. I was 44 when diagnosed and talk about a shock. Well just two days ago marks my second year since surgery and I have no regrets. I was a 4+4 at biopsy and lowered to a 4+3 after my prostate was removed and cut up.

Sounds like you've been doing a lot of research and that's what I did. You MUST be comfortable with your decision and the doctors you put your trust in.

Your young, and it's very early so you have many options, like I already said, you have to be comfortable with the direction you take, best wishes and prayers for you!
Posted 12/3/2013 2:55 AM (GMT 0)
Hope-

I was also diagnosed (and treated) at 41. I'm sorry you are here, but glad you found us.

I highly recommend viewing the links below in my signature for folks newly diagnosed with PCa.

-Gedman
Posted 12/3/2013 4:18 AM (GMT 0)
Congrats on your baby! But it means you have a consideration - perhaps wanting more kids - that was not a factor for most of us. Sorry you have to be a member of our club, but you have lot of reasons to be confident that PCa will not prevent you from grandparenthood!
I, too, had hematospermia, which my family doctor thought was prostatitis and treated successfully with antibiotics. It cleared up. When coincidently, three weeks later, my cardiologist ordered a blood test that included PSA, and it came back at 6.7, my first thought was the prostatitis. But I went to a Uro who waited 30 days for another PSA, which came back at 4.2. That reduction confirmed for me that the prostatitis caused the elevated PSA and I was prepared to wait another 30 days for another PSA. But my wife was so upset that I agreed to a biopsy, which came back GS 7. I too am assured that the hematospermia was an odd coincidence and unrelated to my cancer.
You sound like you are very self aware, and that is AWESOME. You need treatment both for the physical AND emotional aspects of this disease and your willingness to get therapy to help you keep your emotions from driving an over-reaction is admirable!
Get good medical advice from multiple professionals and make decisions that match YOUR goals and needs. We are all different, but from all my inquiries, your numbers would seem to give you the option to wait - perhaps more than a few years - before treatment. This could give you the option to, say, have more kids, delay the impact of possible side effects in your lifestyle, and allow the "state-of-the-art" to get even better. But it's your call. The best part of this disease (if there is a best part) is that there are many choices - almost all excellent.
You're gonna die.....in many years......from something OTHER than PCa. Good luck. And this forum has many members more knowledgeable than I. They will help you through all aspects of this journey.
Mikey
Posted 12/3/2013 11:14 AM (GMT 0)
Thank you all guys for your warm welcome!

To cdm39. Some incidents of hematospermia were the initial reason I ever visited the uro and I was diagnosed with PCa. After the second biopsy, hematospermia continued for more than expected so I will have to visit the uro again. I was not alarmed as in some cases stated on the net it can carry of for 3 months, but I better check it out.

AS was presented as an option to me as well, but urologists are surgeons so they know to operate. My oncologist was the only person to suggest AS while he honestly said that there will be side effects, so if I can delay treatment it is better. In the meantime we can monitor the progress or dormancy of the cancerous cells and decide on treatment options as we go.

I will not hide that the first thing that came to my mind when I was diagnosed, was RP to get rid of the cancer but for some reason something held me back. It is also true that my priority is to stay alive to see my son grow up, so if the time for treatment comes I will have to do it.

I have two more questions and I would like to know your views!

Does anyone had a PCA3 test and is it useful? Any idea about how sex affects prostate health if you are already diagnosed with PCa?

Thanks and Good day to all!
Posted 12/3/2013 12:39 PM (GMT 0)
My brother was diagnosed with very similar stats (aka indolent PCa defined by Brady Inst. of John Hopkins), well no treatments at all and now into year 10 and enjoyed a lot of normalcy all these years. Something to think about, results vary on treatments and non-treatments, so tough decisions forever on PCa issues. Monitor wisely on AS is a good thing. 
Posted 12/3/2013 3:19 PM (GMT 0)
Thanks Zufus, I hope your brother goes on like that!

I agree all decisions are tough. One of the things that keeps coming back to my mind related to AS is "what if it gets aggressive and I miss the opportunity to get rid of it early". However the oncologist re-assured me that there is no such risk for the time being. Future biopsies will obviously provide more data for decision.
Posted 12/3/2013 4:48 PM (GMT 0)
If I were you I would find myself an organization that has a strong AS program and consider that to be my due diligence for dealing with the disease for now. The A in AS stands for
"Active" and with your low-volume, low-Gleason score cancer there is very little danger of it getting away from you if it is actively watched. There are drawbacks to the "AS Lifestyle" -- rather too many guys in white coats poking around up your butt with peculiar instruments -- but it will let you finish your family without undue risk that you won't live to see them grow up. Once you have as many children as you plan to have you can revisit your options.

You should talk to the doctor about your hematospermia, which seems to be going on longer than it ought to after your biopsy, but I don't see that being a problem that would prevent you from choosing AS.

I have never heard that sex is bad for men with prostate cancer. It does make your PSA go up, which is why you should abstain for 48 hours before you have blood drawn for a PSA test. But aside from that, keeping it flushed out helps to reduce the chance of infections and seems to help somewhat with inflammation.

Welcome to the forum. Sorry you need to be here but glad you found us.
Posted 12/3/2013 6:04 PM (GMT 0)
I had had sex the night before my first 2013 PSA test (I had no idea my cardiologist was going to order one) and was told that that contributed to my elevated reading - and that became another reason for me to deny what was becoming clear: I had PCa. But that is the only reason I was ever told to avoid sex. It causes an elevated PSA reading if done 48-72 hours before a PSA test, but does not contribute at all to the growth of the cancer.
My, apparently unrelated, hematospermia cleared up after a few weeks. Perhaps it responded to the anti biotics. I'm told it is just as likely it cleared up on its own. It seems to be one of those things that comes and goes with some of us and doesn't mean anything bad, in and of itself. Other than being an upsetting thing to see. I read somewhere that compared it to the occasional blood you might get sometimes when you blow your nose. Usually doesn't mean anything. Standard caveat: I'm NOT a doctor!
You are doing a great job dealing with this, gathering all the info you can to make an informed choice. When any GS 6 folks consider AS as an option there is always the fear: what if I'm that rare guy whose cancer really is more aggressive than all the tests predict? There is some degree of uncertainty (e.g. side effects)with all options. Only you can answer your ability (and your family's) to live with any uncertainty that remains part of your treatment choices. I encourage you to follow through on the idea of some counseling to help you sort through the impact of this on your psyche. Not because you're crazy! But because you're NOT and don't want this to make you so!
God bless!
Mikey
Posted 12/4/2013 8:34 AM (GMT 0)
PeterDisAbelard thanks for your welcome & comments. To be honest any future plans for children are frozen for now. Although there is support from my wife & family , it is too early for us as we need to feel comfortable and control this situation. Sex is also out of the question for a while now as there is no mood (which is not right I know), but I will consult the Urologist as well for this.
Mikey we agree on the counseling, I think it is crucial especially at this early stage in order to find ways to deal with it before it gets big and affects me or the family.

My decision to join this forum is justified on all your posts. Initially I was skeptical but it is the best thing I 've done so far.
Posted 12/4/2013 3:06 PM (GMT 0)
Hope,
If you are serious about AS you need to read "Invasion of the Prostate Snatchers" by Dr Mark Scholz. It is the best reference book on low risk PC and AS. Understanding AS is the key to having a successful journey using it.
You can also do some research on Dr Caroll's program as UCSF as it includes a diet and mediation along with group support. There has been no one in that program that has had any identified progression over the 4 year period. Their control group has the normal 30% rate of progression, so what Carroll has been doing seems to be more effective than normal AS programs.
Posted 12/4/2013 3:36 PM (GMT 0)
A diagnosis of prostate cancer almost always knocks a man down. I know I was steamrollered. But once you can peel yourself up off the pavement and look around you will see that the risk your cancer offers to your life and your ability to provide for your family, while real, is fairly small. Stevedores on cargo ships, fishermen in the Gulf of Mexico, and long-haul truck drivers face larger risks from their professions than your cancer imposes on you.

The threat to your ability to father children is more real and immediate. Talk to your doctors and your counselors about that. Also talk to them about the sex thing. There is no need to forgo the reassurance that it can offer to you and to your wife. Life will go on.
Posted 12/4/2013 7:50 PM (GMT 0)
John T,

I did some homework before joining the forum (from the read here first topic), so the book you mention is my bible for now. Although I am at 25% reading it yet and the more knowledge I have it makes me more confident about AS. Funny thing is that I purchased through kindle so I can read on a tablet (it would be a strange book title to other passengers in the subway!).

PeterDisAbelard,

you are right about low risk and fathering children as a priority. I will update you after the Uro visit tomorrow!
Posted 12/4/2013 9:09 PM (GMT 0)
Dear Hope:

With your stats, if they hold up, you have a 99.9% chance of NOT dying from PCa. As others have said, the annual check-ups are cause anxiety. It's actually too bad you had to have a biopsy.

Hang in there !

Bob

Posted 12/5/2013 2:29 PM (GMT 0)
Feeling better today,

The new urologist said that AS is my best option at the moment with annual biopsy and regular PSA testing (Latest PSA 0.97 FPSA 0.44). He did not like the fact I was pushed down this biopsy trip at my age (41). He fully agrees with the oncologist and I should carry on with my life without worries till we see a change.

As for the continuing hematospermia he gave me antibiotics for a 2 week treatment and we see if it goes away. He believes that 14 cores from each prostate lobe can cause incidents like that (although it is 3 months from biopsy) , plus the fact that I may get inflammation from biopsy.

He also suggested that I should carry on with a normal sex life (which was out of my mind) as it will assist me to get rid of the inflammation sooner (with the help of antibiotics).

He was also the first doctor (with the oncologist) that treated me as HUMAN and not as another guinea pig. Imagine that my first Uro gave two options AS (If I can handle the psychlogical strees) and DaVinci (pushing me more for this).

This is the first day that I feel better after so long....
Posted 12/5/2013 3:40 PM (GMT 0)
Dear hope

Good for you! I hope you never have to face treatment for PCa!
Best wishes
Bob
Posted 12/5/2013 3:47 PM (GMT 0)
So happy you are feeling better. Eventually (in perhaps more than a few years) you will be treated in some way. The options are excellent and always improving. Or you will die of something else before being treated for PCa. But I believe, firmly, that getting a diagnosis early, like you have, pretty much guaranteed that you will die someday of something OTHER than PCa. It's good to ELIMINATE causes of death, too!
Self-discovery is, perhaps, the most critical part of a truly happy life. We certainly learn things about ourselves at times like these! Be not afraid!
Mikey
Posted 12/5/2013 4:12 PM (GMT 0)
Sounds like you have found yourself a good doctor and are putting together a good plan.

Drop by from time to time and give us an update.

Now get out and have yourself a life, youngster!
Posted 12/5/2013 4:32 PM (GMT 0)
The good thing about this situation is that you get scared, shaken, and value life and moments as you normally should. Gentlemen I will keep you updated. I hope the best for you all !
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