Prostate Cancer Survivors

 

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Terrified

I am 55 years old in good physical shap. I work as a paramedic and also do search and rescue. My wife and I have a fantastic sex life. We have sex every day. I was just diagnosed with prostate cancer. I have seen 4 doctors si far. 3 of them at Dana Farber in Boston. All have said the same thing. Radiation or removing the prostate. They are all leaning twirls removing the prostate . I am scared to death that this is the end of my sex life. Some one please talk to me .

Re: Terrified

Hey Pete:
There are many here to "talk" and help as best as we can.
We need more information to get started.
What led to the biopsy? What are the results of your biopsy including Gleason Score, number of samples taken, stage if known etc. Symptoms if any? Family history and any additional data you think may be relevant.
All of us can appreciate the degree of concern you express, but it's a tad early to panic.
The sooner you respond the sooner we can be more substantive.
Don O.

Re: Terrified

Heed Don's reply. It is filled with wisdom. Do not panic and do explore all avenues and courses of action. Final decisions will be yours alone but there are many on this site willing and able to help you through this initial shock of diagnosis through their own experiences. Jon R.

Re: Terrified

Approximately 2 years ago my doctor found a small spot on my prostate. My PSA was around 2 so we just monitored it. On my last physical my PSA had shot up to 6.06 so I went to see my urologist and he felt that the spot had changed when he did the digital exam. I had a 12 needle biopsy and it showed cancer in 2 out of the 12 core samples. gleason's grade 6 (3+3) involving 5% in one core and Gleason's grade 7 (4+3) involving 30% in the other core. I have had a CT and bone scan there is no mets. My urologist suggested radiation or removal of the prostate. I went to Dana Farber in Boston and saw a uroligist and 2 oncologists they also said radiation or removal of the prostate. All 4 doctors are leaning more words removal of the prostate. Dana Farber also redid the pathology on the core samples with the same results.

Re: Terrified

Pete; No doubt you are not in a place you want to be right now. Don't panic, but do pay attention! A Gleason of six leaves some choices open, a Gleason of seven is in the "use caution" zone and over rides the less critical six Gleason. Your two year jump in PSA is another indication that this cannot be ignored. I wish I could give you some encouraging news to make you feel better. Fact is - cancer is not good news. Right now it is probably pretty un-complicating and other than the medical tests, you would probably not even know it is there. Dealing with it is always a compromise of some kind. Aggressive treatment increases chances of getting rid of it but gives you "in your face" side effects as you know. Less aggressive treatment may give you more "normal" years of life but you will be living with the threat of it being there and not being sure of what it is doing. Neither way is for sissies! Either radiation or surgery gives about the same results. Radiation is easier up front though it doesn't give one the definitive result facts that surgery might and makes further "curative" procedures more difficult should it fail. Surgery allows a means of physically (microscopically) examining the prostate after removal to give some good info as to how aggressive the cancer was and to what extent it had traveled. Surgery side effects are immediate and may improve with time while radiation side effects can surface much later and get worse in time. Surgery does leave radiation as a back-up if it fails. Radiation also gives less clues to how good a job was done as far as eliminating the cancer. Doctors are pretty educated in this matter but are not likely to give definite advice as each person has to weigh his own priorities in life. They can only quote statistics and percentages as this d---ed disease has so many variables. None of this has probably helped you much but if there are questions you think I might help you with feel free to e-mail me. Jon

Re: Terrified

Hi Pete.

I had radiation treatment for PCa in 2008. My staging was Gl 7 (4+3), T2b, with PSS's these last 9.5 years ranging from 0.1 to 0.36. I was 57 when I started my treatment journey. I am now 67 and ED has not happened.

best wishes
John

P.S. Hello to the old PCa warriors.

Re: Terrified

S'cuse me Pete.
And a warm Hello to you John B!
Don O.

Re: Terrified

Pete:
In my layman's judgment you have intermediate grade PCa that warrants treatment.

I have no idea where you are located, the type of radiation that is being offered and the skill of the surgeon who is recommending a prostatectomy all extremely important factors to consider. Even if I knew these aspects of your situation, I would not substitute my judgment for yours.

I would encourage you to undertake as much research as you feel comfortable doing. A good starting point would be the following book by Bob Marckini: "You Can Beat Prostate Cancer..." His chapter on the advantages and disadvantages of several methods for treating PCa is usually of particular interest to the newly diagnosed. This book is readily available, an easy read and well worth its modest price. Although this book is nearly ten years old much of this information remains relevant.

In general the more research you undertake (be sure to include up-to-date material) the more likely you will be to make a good decision for yourself. Your research will also enable you to ask good questions of the various clinicians you are bound to encounter as you proceed.

Now that you have provided us more information I suspect others in addition to Jon and I will provide their perspectives. I certainly encourage them to do so.

Keep us posted as you proceed. Raise any further questions that may occur to you.

Best wishes Don O.

Re: Terrified (Sex and the Decision Process)

Hi Pete,

I am sorry to read of your diagnosis. As a paramedic, I am sure you have seen, first-hand, men & women’s lives change in an instant, but yours does not have to (at least not right away; see the fourth paragraph below)

First, I want to say that, as a 60 year old, ten year AS (i.e. active surveillance) veteran, I am a proponent of AS for anyone, regardless of age, who meets even the most relaxed criteria, espoused by Dr. Laurence Klotz, and found in the NCCN (National Comprehensive Cancer Network) guidelines. That being said, I am sorry to say that, at your age, your Gleason 4 +3, verified by a second opinion, puts you outside of those guidelines. I will say that, in my opinion, your second opinion should not have come from the same lab, and since so much is riding on this, I would send my slides out to Bostwick Labs, or Johns Hopkins (just to name two with excellent reputations) for a third opinion.

Now, regarding your sex life and treatment, I empathize. I, too, wanted to avoid treatment because of a great sex life (though, certainly, not as great as yours). I was lucky, though, because I was a verified Gleason 6, and even though I wasn’t an ideal AS candidate due to some clear risk factors (that are in my posted story), I chose my course of action and have no regrets. Ironically, though, over the last 10 years, due to the onset of pre-menopause and some other women’s issues, intercourse today is virtually non-existent*. So, even the best sex lives can change, and you will find that a love for your spouse that goes beyond the physical is what is most important in a relationship; if that love is there, where your relationship isn’t all about sex, then that is what will see you through.

*While I am in no way trying to downplay the impact this disease will have on your physical and mental state regarding your sexual prowess, I would be remiss if I didn’t say that there are, obviously, a lot of ways to please your wife in bed that don’t involve intercourse.

The comparative results and side effects of radiation and radical prostatectomy were touched on in another post, so I will be more specific on the subject of sex. This is a quote from the Bible of prostate cancer, entitled “Guide to Surviving Prostate Cancer” by the world famous surgeon, Dr. Patrick Walsh: “Radiation seems to cause a man’s ability to have an erection to diminish over time (months to years); about half the men who receive it are impotent at seven years.” The doctor goes on to mention that Viagra can improve sexual function after RT, particularly in men who can achieve partial erections. Now, by contrast, radical prostatectomy has a more immediate impact on potency, and from feedback on this site, you can expect that, even if you regain your function, your erection will be, permanently, about one inch shorter in length.

So, you obviously, need to do more research on your own so that you are not swayed by a doctor with an agenda, have further consultations with a chosen** oncologist, surgeon, and radiologist once you have educated yourself, and have a heart-to-heart with your wife, after you have all the facts, about what is most important to the both of you. Once that is all done, then you will know what course of treatment is right for you.

**I can’t stress enough that you need to find the top doctors in their field to choose from because it can make a significant difference in your outcome. Luckily, as New Englanders, we have some of the best cancer centers and doctors in and around the Boston area, and Dana-Farber is a great place to start.

Best wishes,
Alan Murphy in Massachusetts, USA

Re: Terrified

Don't be terrified. and do not worry about your sex life. Make sure you survive first, then fix the plumbing. I had BPH symptoms and my Dr. gave me flomax for it and had a blood draw to check my PSA. the flomax fixed the urination problems and I thought it was just age related ( 60 years old ) the PSA came back a 6. I was sent to a urologist who did a biopsy. 11 of the 12 samples came back 9 out of 10 on the Gleason scale. I had an aggressive advanced form of prostate cancer. The bone scan showed it had not spread to the skeletal system, that was the first good news I had. I had surgery on Dec 2nd to remove the prostate. It was 75% covered in tumor. I will begin radiation treatments next month to eliminate remaining cells but I will be cured. That was the immediate concern. The rest is healing and it may take five months or so or up to three years for the nerves to regenerate, in the mean time the Urologist told me he will get my erections working again till the nerves heal. So please do not panic, positive attitude is a real key to healing, like I said, get rid of the cancer first, deal with the rest when it is over. All will be o.k. my friend.

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