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Very scared

amccann415
Posts: 8
Joined: Oct 2008

I was diagnosed with Prostate Cancer on September 26. My PSA was 8.8 and had Gleason scores ranging from 6-8 in the cores. two were labeled very agreesive. I am nervous about my standard of life after treatment. I am 40 years old. i hope to live a long life. but more important I want to live a good life. Tell me your stories. I am leaning towards the robotic surgery. I have a good urologist who has done over 4,000 surgeries here in detroit mi. but he is so good I cant get in to see him until mid december. Is that too long to wait. I am anxiously awaiting your comment.

rogermoore's picture
rogermoore
Posts: 265
Joined: Mar 2002

I am very sorry to hear of your diagnosis. However, it does sound like you discovered it in it's early stages.

When discussing the surgery with your Dr. did he seem concerned over your having to wait until December for the surgery? I had to wait three months to get into the Surgeon I used. From that experience, I know the apprehensiveness you are feeling. I would ask your Dr. if he felt waiting would increase your risks of the cancer spreading.

I am a 7 1/2 yr survivor of surgery and have been leading a perfectly normal life following my surgery at 58 yrs. If you have any questions you feel too personal to post please don't hesitate to e-mail me at this site.

I know how devastated you feel, but with today's technology you have a very good chance of leading a full and normal life.

Roger

amccann415
Posts: 8
Joined: Oct 2008

Thank you for your words. Can I ask what it was like,the first appt with the surgeon,after the surgery. what can i expect.

larry59
Posts: 41
Joined: Oct 2008

Your life changes immediately with a diagnosis but prostate cancer is very curable when caught early. I found it best to write down questions for next doc visit cause it's hard to remember everything. And make sure you doc explains everything so you fully understand. A really good book to read is Dr. Patrick Walsh's Guide to surviving prostate cancer. He's a professor at Johns Hopkins and one of the best prostate docs in the world. And prostate cancer usually is slow growing. Take care and good luck.

larry59
Posts: 41
Joined: Oct 2008

Unfortunately I waited too long to go to doctor so my prostate cancer is terminal, spread to bones. I had a bladder catheter in me for almost 6 months, had surgery Friday that should allow its removal. And doct told me Thursday that cancer had spread into my back so I will be seeing a radiation oncologist soon. Like I said before, caught early pca is very treatable and curable, and it sounds like yours has been caught early. Pls try to get a copy of that book, it answers so many question. And stay positive, there are so many treatments available. Good luck write again if you would like. I was diagnosed in June and have gained a lot of expertise since. Might be able to help you with some questions (but walsh's book is very thorough).

johndeer
Posts: 17
Joined: Oct 2008

Go to www.phoenix5.org. What a great website, one of the best I've seen so far for general info on PCa. Also protonbob.com, the website for Loma Linda proton radiation treatment center. I'm in the research stage having received the news of my diagnosis Oct. 13. I got the Lupron shot to put the cancer in remission for 3 months while I did my research. You are very young and it's great you even caught it. I'm scared, too, but the more I learn the better I feel.

Peter51's picture
Peter51
Posts: 29
Joined: Nov 2004

I was 50 four years old when I was diagnosed with PC. I think a year slipped through the cracks from the urologist managing my case. At a PSA of 8.6, the biopsy showed nothing. Note that a clear biopsy is no guarantee that you are actually clear. My PSA increased to 13.4 within six months. A second biopsy was not done until another four months later when I was diagnosed. The doctor operated on me about two months after the diagnosis. Yes there were so many delays but I am four years out with no detectable PSA reading. I think I'm doing very well.

This would be a good time for you to learn as much as you can and get informed on life after the surgery. Comfort items to get for your recovery. I had the big radical prostectemy and was in great pain after the surgery. I rented a medical chair and grab bars to get in and out of bed. You want to know all you can about incontinence and ED (erectile dysfunction). You may be a lucky one but you may have some issues after surgery. Learn about kegal excerises and local support groups. Meet other people that have gone through the same or related treatments. Learn about nerve sparing and Viagra. Many men I have met have been around twenty years after their surgery and are alive and kicking. There is a good chance that your diagnosis is early and you may have more issues with the "after effects" than a reduced life expectancy.

Good luck. Life is a wonderful gift. Take care of yourself and enjoy every day.

Peter

shipjim's picture
shipjim
Posts: 130
Joined: Apr 2006

If you're in Detroit, you are probably seeing the clinic at Ford Hospital which has one of the best records in the country.
The doc will probably want bone scans, MRI and maybe cat scan also I had an EKG. At the office he'll explain the procedure, probably a digital exam and ultra sound.
For me, the surgery was a non event, went in at 6am walking around by nood (with my trusty catheter bag) which you keep about 10 days. Do the kegal exercises, your wife can explain them, go for the robot if at all possible. I was back playing golf in 6 wks.
Keep us posted, jj

fcatroneo
Posts: 89
Joined: Jan 2007

Sorry to hear of your PCA. I would not be too concerned about waiting till December. Normally you have to wait approximately 2 months after the biopcy before you can have any treatment.

I am sure you will be fine. Robotic's is now the gold standard. I am 62 years old and had RP in December, 2006 after being diagonist in early September. Out of the hospital in a few days..had a cathedar for 10 days, wore only 1 pad after surgery. Had sex with my wife within weeks of hte surgery (with the help of Cialis). There is life after PC.

Again, you will be fine.

Frank

JRB47
Posts: 1
Joined: Jan 2009

Frank, Is it true that you no longer can have an orgasm during sex?

rogermoore's picture
rogermoore
Posts: 265
Joined: Mar 2002

JRB47

You will be able to have an orgasm during sex. The only difference is that there will be nothing to ejaculate. The sensation WILL be the same.

Roger

Angelica2003
Posts: 20
Joined: Sep 2008

My husband was just diagnosed on the 5th. And being 38 he feels alone. You are the closest to his age.

Maybe we could e-mail back and forth?

larry59
Posts: 41
Joined: Oct 2008

Feeling lonely is the worst first emotional experience. That's why support groups like this site are so helpful.
I was diagnosed in June but had the cancer for a long time, waited too late and now it is incurable. But caught early many many treatments can result in a cure. Email me at foley2007larry@mchsi.com. I recommend getting as much info as possible. Web has lots of (questionable) help. I would recomend reading "Man to Man'' by Michael Korda ( it's kind of old) and Guide to Surviving Prostate Cancer by Dr. Patrick Walsh, probably the top prostate cancer doctor. He's a professor at Johns Hopkins and his book has lots of information. I got my copy on the web for one buck, but 5 dollars shipping, go figure.
The main thing: time is of the essence, don't delay getting treatment.
Good luck to you and your husband, let me know his name. Write anytime. I'm not an expert but I sure have learned a lot about prostate cancer in the past 6 months.

amccann415
Posts: 8
Joined: Oct 2008

I would love to correspond. I have the same feeling, it is hard at times and very scary.my email is amccann415@comcast.net

thegriz
Posts: 23
Joined: Nov 2008

I'll add my comments about the DaVinci robotic surgery: Great! Had one year ago, home the next day, normal walking within a week. Amazingly painless - took an aspirin for a day or so. Wore cathether for one week. Wore pads for a few months, tapering off to women's kotex, then nothing. Dealing with the pads was frustrating at first (and the feeling of "drainage"), but that passed. No problem now unless I have several drinks, which seem to relax the muscles (not too surprising) Was nerve sparing - can get erections w/o drugs, but usually use them for serious "enjoyment". A loving wife has been the best medicine. Best of luck to you and your surgeon. Life can be pretty darn good afterword.

JH32
Posts: 19
Joined: Nov 2008

You are not alone. Just finding out that cancer is in you is scary enough. We are 'lucky' because prostate is so slow growing. I was diagnosed in early April, did my research and doctor interviews, and then didn't have surgery until mid-July. Though my PSA was initially low when I had my biopsy done- 1.9- it had increased from 1.1 in just two months, and then was at 2.5 another month later. My biopsies had cancer in 9 of 12 cores and ranged from 75% to 5% cancerous. My docs understood my concern about the increases (which to me meant aggressive), but assured me that there is time to breathe and figure out what you want to do. I am 4 months post open radical prostatectomy surgery and they assure me they got it all so it appears that waiting was the right thing to do. I too wanted the best surgeon in my area.

Have you tried setting up a surgery date with him? you can cancel it after meeting him if you change your mind. I did that with two surgeons while I decided between the two. Hang in there-
there are definitely up moments and down moments, but don't focus on the down ones. Keep your eyes on the prize and fight this thing.

Angelica2003
Posts: 20
Joined: Sep 2008

My husband is 38 and was just diagnosed. We know exactly how you feel. There are very few guys in the 30's and early 40's to talk to or arround our age. My husband is also scared of the possible side effects. We are lucky there was a serious incident that happend a few nights ago with my husband and he is seeing the specialist on tuesday the 18th.

Anyways he can totaly understand about being scared and being told you will have a HUGE change to deal with at such a young age. But I have learned that NO MAN no matter the age wants to look at the side effects with the surgery. It is scary for anyone at any age. But I think the younger you are the more scared you are.

Unfortunatly we do not have robotic here, my hubbie has to have laproscopic. The healing time with that is much longer. We wanted robotic but it is only available in BC and Ontario.

If you ever need to chat, send me a private messege and maybe the 2 of you can chat.

email my hubbie at blb_26@hotmail.com, or add to msn

johndeer
Posts: 17
Joined: Oct 2008

I am 54, and feel the same way. I can imagine how you and you husband feel. I think if you want the daVinci, you should do it. The alternative is feeling bad because you compromised in treatment. The extra cost will long be forgotten in the many years you have yet together. I'm not specifically advocating a particular treatment, but advocating that you be true to what you think is best for you. That seems to be the theme here. I am still trying to decide how to treat. It's between daVinci and proton beam at the moment. Prayers for you and the families that are in the fight.

rolf5
Posts: 5
Joined: Mar 2009

I had a PSA of 10.5 prior to Radical Prostatectomy in 06. For various reasons they waited 4 months after diagnosis before surgery was performed. Cancer is very slow growing, but to wait more than 60 days or so would make me nervous. I had the standard surgery and it went well. Had a little incontinence for about 3 weeks, after that everything returned back to normal. I live a very active life, skiing, kayaking work outs etc. btw, once I knew I had to have surgery I went on an accelerated work out program to be in as good a shape as possible before the surgery. It worked well. Good Luck, you'll do fine. ---- rolf5

santefe55
Posts: 7
Joined: Mar 2009

I was diagnosed in December of 2005. No symptoms. PSA was 5.6 Had surgery in March of 2006 at the Moffitt Cancer Center in Tampa (laprascopic). Gleason was 7 (3, 4).PSA has been undetectable since then. I've had problems with impotency since then, but that's a small price to pay for your life.

LennyK
Posts: 2
Joined: Mar 2009

I too have a 3 year anniversary coming up in April. Can you tell me any advice about the impotency, or what your dr. has done? I've tried cialis, the pump, but doesn't last long. Next the dr. wants to try injections, but my fiance and I are both scared to try it. It seems dr. isn't willing to try new things too fast. It sounds like some men try new things 5-6 months after surgery.

2ndBase's picture
2ndBase
Posts: 220
Joined: Mar 2004

As a fortunate survivor of 5 years, after being given a 50% chance to live two years I want you to know that besides good treatment you really need to eliminate all the stress that you possibly can. Find a job you love and hobbies you love even more. Take more time out to spend with your family. If possible buy a hottub and use it every day. This is what I have done and though I still have cancer and my psa is rising again rather quickly I can assure you that if I still had the stress I experienced before cancer that I would not be here today. My hope is that you decide upon the best treatment for you and that you find a new clarity concerning your day to day life.

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