Just getting started

Hi, I'm 41 and will be 42 this month.  Just diagnosed with PCa.  Feeling so low.

Am most worried if I do surgery scheduled Sept. 12 (DaVinci) that I will have incontinence.  I guess impotence is a terrible by-product of all this as well.  I have almost lost my libido since my diagnosis.

I'm also considering Loma Linda and Proton Therapy.  But I've gotten 100% advise from doctors, friends who are doctors, and from doctors's friends who are doctors to have the surgery.  It feels like I'm flying in the face of reason to do other than have the surgery.

But I go to sleep and wake up wondering how my life will be post surgery.  My wife is supportive and I know will be there for me.  She is the most youthful 51 year old woman I have ever known. 

I don't think anyone can provide the right answer, but ones self.  It's just such a darn hard decision to make.  I wish my scores were better since I'm so young, but I wish more I am able to beat this thing since they are what they are.

It's hard to find data for younger guys.

2/12 biopsies positive.

PSA 4.65

Prostate Right Base gleason grade 3+3=6 or 3+4=7, depending on which pathology report you believe.  4mm tumor @ 25%.  Perineural invasion present.

Prostate Left Apex (apparently a weak area of the prostate) gleason grade 3+4=7.  6mm tumor @ 30%.

    Hi ~ New Friends ,   You’ve already been blessed by finding HealingWell .   Continue reaching out to all of us because “Your Journey” will now start to help others.   And we are here to help you….. Support and Friendship is what we are all about .   Yes ~ 41 is young… and we are so thankful they found it now….. not later!     As you move forward… you will find yourself on overload with information.   Stop ~ take a deep breathe … and continue forward.   The stepping-stones that you are on and have recently traveled are all stones we have traversed.   We are now here to help shore up any wobbly ones for you.   All of our experiences will help to give you personal knowledge from our travels.   Pull what you need from each of us and you will find your way much easier.   Buddy & I invite you to visit our personal thread listed in our signature below.   It will give you a glimpse into “Our Journey”.   Make sure you visit the threads in the Helpful Hints link in your Welcome Letter… Also ~ please take time to go back page after page…… because there is so much here to help educate you from “all of our” personal travels.   We have extra strength to share…. So plan on pulling some if for you!!! Keeping you close in thoughts and prayers as you move forward.   This journey is best traveled with friends.   In New Friendship ~ Lee & Buddy

Hi 41,

Sorry you have to be here but this is the right place for hope, info and support. You are the only one who can decide on the right treatment for you. That's because you have to live with the outcome. Aus's advice about choosing the best possible doctor is what most of us believe is the most important factor in you decision. You have to live with the outcome and the after effects so do all the research you can on the various options. Don't get all involved with the statistics either. The numbers look pretty much the same when all is said and done. Talk it over with those close to you, do your research then make a decision and don't look back.

Good luck and please stay with us...

Jim

This may help with the issue of PNI. It is not as big an issue in most cases as it may sound.

http://www.diagnosis.prostate-help.org/perineu.htm

If you would like to know more about Loma Linda post again and I would be glad to help with information about Protons. I am starting treatment on 7/26/2007 and have just returned from there after doing a final consult and treatment planning. Completely satisfied with the care I have received so far from LL.

Thx Jayadub

I'm registered at ProtonBOB and have Bob's book. He's been very helpful and supportive. I've talked to some of the guys on the ProtonBOB Young Man's List. They have been encouraging, but the overwhelming medical community does not seem to embrace Proton Therapy. That is what is confusing and troubling to me.

I have two VERY close friends who are physicians (one an Anesthesiologist and the other an ER Doc) and both listen to their colleagues' advise. I don't believe physicians to be the self-serving community that they are often portrayed as. These friends of mine are both getting input from their colleagues that surgery is my best option. One even said to me, "when I asked for their advice I told them to think of the patient as me." I have not gotten one vote for Proton Therapy.

One of my friends has even offered to go with me to Loma Linda to hear what the docs have to say and help me interpret their input with the other info I've got.

I admire your resolve to go with Proton Therapy. I wish my age factor didn't seem such a strong point to everyone. I look at my kids (in grade school) and wife and think, I have to make the right decision so I can be there for them long term.

Anyway, I'll look for you on ProtonBOB, or look for me. My number is posted there and I would be happy to talk.

Hey 41:

I hate to have to welcome you young guys to this forum, but early detection means the best possible chance for a complete cure, so glad you found your Pca and this forum.

I have only two points to make: "the overwhelming medical community does not seem to embrace Proton Therapy" - that's because very few of them know anything about proton therapy and, as a surgeon,  would you recommend a treatment that will take dollars out of your pocket??

Secondly, for the most part, doctors will recommend their modality as best because that is what they are familiar with and it is their livlihood.

The best treatment for you is the one YOU feel the most comfortable with and the one that has the side effects YOU are willing to accept.

Wishing you all the best in your research and keep us posted.

Dutch

Hi 41,
This disease is very beatable and you have to throw away the cynicism. It will be of no use living with cancer. I too was stricken young, 44 but it had it there be quite some time, like many others here. After surgery it was confirmed that I am late stage III. But I won't let it get me down. I can't. I am very glad that I chose surgery because my fear of radiation was that it would leave unanswered questions about how bad I had the disease. It proved correct that the clinical staging and the surgical staging were quite different. Radiation would have killed the prostate, and likely the cancer in it, but I would have had to wait until recurrance to see what my stage was. And that answer could only be stage IV if it recurred. I am able now to apply my own control on what treatments happen next. And I didn't have to wait for recurrance. I am glad the prostate is gone, and I am glad that my PSA went undetectable after the surgery. And I am also strangely glad that I know I have pT3b cancer and can do something about it before it gets worse. I am not by any means knocking proton or IMRT as I believe both have value in treating me into the future. In fact I have had surgery, hormone treatment, and I am currently undergoing my 23rd IMRT treatment at 7:00am tomorrow. I heavily agree with your friends. At our age and Gleason, recurrance likely won't be prevented with proton treatment alone. I will complete 38 "hits" at the prostate bed where the surgery detected positive margins and local metastasis.

Enough about my story. You are welcome here at any time. You are our friend and comrad. But you need to shake the fear and be positive. There is a thread here about "Positive Thoughts" by veteran1. Vet raises hope for all. Once you are done with the initial shock, get tough about it and apply the same skills you used to find this site, and find what treatment you trust. There is no simple answer, but there is peace of mind. Good luck and hang in here. You'll find some excellent advice. And by the way, I was fully continent in just days after surgery, and viagra is helping. Not bad after the above treatments all in the last 5 months. My surgeon was Dr. W.i.l.s.o.n at City of Hope, not far from Loma Linda. 1,500 and counting just on robotic procedures alone. He directs the PC program their at CoH and one of his surgeons, is also one of the best, Dr. K.a.w.a.c.h.i.

Tony

In remission at pT3b, pre-op PSA 19.8, Gleason 4+3=7, 4 positive margins.

Post Edited (TC-LasVegas) : 7/12/2007 2:26:10 AM (GMT-6)

Hello 41diagnosed,

Like the rest of the members; I wish you didn't need to be here, but we will give you all the support we can. As you have said most of the medical community see DaVinci surgery as the new "Gold Standard" for PCa treatment. All of the different types of surgery and radiation yield the same high percentage of success. The difference seems to be what each person wants to deal with. Radiation is a minimum-invasive theropy, and is for those people who would rather spend the time to under go the regiment of treatments then the prospect of a surgery. Surgery offers a "get the PCa out now" solution. It may take some time for your body to recover, but it does seem that the stronger younger guys heal quickly. In a few cases here the guys have reported no incontenence, little if any ED problems, and were back to work in just a couple of weeks.

This was not the case for me, but I was 60 when diagnosed. It took 5-6 weeks for me to feel that I was getting back to normal, and about 10 weeks to regain continence. Would I still choose surgery? Yes, because the most important thing to me was knowing that the PCa was out of my body.

What ever treatment you finally sellect; make sure the doctor has experience. I wish you good luck, and hope you will continue to post your progress updates.

Glen

hi 41 - I think the shock of your diagnosis is about gone now and you will be able to think clearer. yes, it's a hard decision to make on what course to take. my husband asked his urologist (who he first met at the biopsy) what he would do, and the answer was "I had PCa 3 years ago and I had surgery." Jeff decided right then to have a radical prostatecomy whereas I wanted to research other options. as you can see from below, recovery is moving along. yes, ED is a nuisance and frustrating, but something that we continue to work on. incontinence was fortunately not a problem for long. soon you won't be obsessed with PCa and life will go on. take care, kat

Hi 41. When you learned you had PC your life changed forever. How you deal with it is up to you. Educate yourself on all the treatments, get second 3rd or more opinions about the treatments if you have too. Make your informed decision and don't look back. My gleason score and PSA are near the same as yours. I had open surgery. Don't let that scare you. They will not fillet you as one radiation oncologist told me. I had no pain meds after I woke up in the recovery room none as of the date of this message and don't think I'll need them ever. No bladder spasms either. I have friends who have had all kinds of treatments. Decide on what you can live with. Getting rid of the cancer is the most improtant issue. Take care and keep the faith.

Mika-mvesr

Just want to bump this to say that 41 and I had a great phone conversation this morning regarding his thoughts of treatment and his concerns re: an all eggs in one basket treatment approach. Protons are not that.

Thanks for taking the time to discuss your thoughts with me and please post here when you are able to update this thread.

In friendship
John

Dear 41

My heart goes out especially to the guys who have to face PCa at a young age and make the agonizing treatment decision. As you can see I selected Proton Therapy, but my much older age made that decision much easier. If I were your age, my decision would more likely have been surgery for all of the reasons given above by other members. While Proton has a great track record of success, there are really no definitive longer term studies tracking its success versus surgery, especially for younger guy like you at your particular stage of PCa. In my case, I was told that I had about an equal chance of success whether I chose surgery or some form of radiation. I chose Proton because I perceived, based on my research, that any side effects would be easier to deal with than surgery, at my age. Nevertheless, after surgery, younger guys have a better chance of overcoming incontinence and ED than older guys, and on a more rapid basis. Once we get PCa, we have to move forward, accept our fate and believe that we can lick this nasty disease. Being strong in the face of adversity and keeping a positive attitude is so important. Go with your heart in your final treatment decision, as tough as it may be. God Bless!

Dave

Hi 41

I to am sorry you have to be here but this is a WONDERFUL place to share feeling, thoughts, and ideas.

I battled with what was the BEST treatment, even went to a cancer center in Illinios for a second opinion.  The radiologist there was very objective, and told me surgery was a very good choice for me.  Also keep in mind if you select radiation as your treatment, surgery is not a second option.  There is a procedure called salvage surgery, but even the sound of that sounds less than hopful.

I had the open radicial procedure just about 5 weeks ago.  No pain, just annoyance from the catheter.  This procedure enabled the surgeon to GET IN THERE, and feel around for any other suspicious organs.  I am using only 1 pad a day, and should be pad free soon.  Had my first PSA test yesterday, and am waiting on the results today or morrow.

Take care, and keep your spirits HIGH!!!