Decided on surgery based on family history

Realziggy, except for reading my accounts here, there is no way to really express how it feels to be on them for so long, having literally thousands of spasms during this time, and hoping there will be an end one day. I was well on my way to be ok, until I went for the Salvage Radaition, it may be stopping or slowing down the cancer right now, but it tooks its full toll on the rest of my body. Right now, I will just be happy in less than a week of being back just on the SP cath, when the foley is removed, unless I go nuts first and have my wife remove it prior to the dr's visit. I don't think its proving a thing leaving it in there, excpet causing me endless amounts of double the pain. But hey, I am just the patient. The bladder neck was already inflamed and sore before this last op, so all it has done by re-opening it, has made it even more sore and tender. Feel like all I do sometimes is waste my life sitting or lying around attempting to heal from one thing or the other. Sorry, just venting again, not at you.

I read all your responses with interest and we have considered them.
Although Tud and others have given us plenty of additional tests that we could do, underlying these tests are two questions.

Are you sure your husband has cancer?
Would you proceed with surgery knowing that the cancer is indolent or very small?

I'll tackle them one by one.

Are you sure your husband has cancer?
I can see lots of posts saying that there is a conflict between the first pathogy report and the second. After doing my research on ASAP I see no such conflict. The diagnosis of ASAP is often made when an inexperienced pathologist, or one that is just not very familiar with prostate cancer is suspicious that there is prostate cancer in a particular location but is not sure because he cannot answer one of the following questions:
1. Would you be absolutely confident of this biopsy diagnosis if it were followed by a radical prostatectomy with negative findings?
2. Would another pathologist of similar experience agree with a diagnosis of cancer?
3. Can you confidently support the diagnosis of cancer based solely on this biopsy result?

The second pathologist, the most experienced on prostate cancer in Australia and a member of the ISUP commision on Gleason grading was able to say yes to all these questions. The very fact that the second pathologist, a man of great experience, who looked at the slides himself (and I spoke to him afterwards) was confident that it was a small well differentiated cancer. There is no conflict when someone with limited experience says in effect "I think so but I am not 100% sure" whereas someone with a lot more experence says " I'm sure". The first pathologist thought there was cancer there but was not confident enough to base a radical prostatectomy on this. As I said earlier his only published paper is on liver viruses.

We could send this slide pack to a third party and we would if we thought that this would help us make a better decision. Both pathologists so far have agreed that at the minimum the slide are suspicious of cancer, with the more experienced putting his experience on the line and saying it is cancer. I think it is likely that the third pathologist will say it's cancer and agree with our experienced pathologist, but even if they say it is ASAP we know that they are supicious its cancer. I don't believe a rexamination is going to add anything as we are confident of teh second pathologist and where do we stop? A fourth opinion?
Our gut feeling based on all the inputs we have received is that my husband has a small, indolent cancer.

Would you proceed with surgery knowing that the cancer is indolent or very small?
We have thought about this long and hard (especially given how nasty the side effects are of surgery). And the answer is yes for the following reasons.

The first reason is that my husband is 52 and healthy.
Based on his mother's age of 88 he has another 30 years of living to do. We do not believe this cancer will stay small and/or indolent for 30 years. At some point we are going to do something about it and my husband would prefer to do it when he is young and fit. From what we have read, younger patients are more likely to regain urinary and sexual function.

The second reason is the hereditary angle (my husband has linked Hereditary prostate cancer)
As tatt2man also says there is a hereditary angle to prostate cancer that affects a small subset of people with prostate cancer. In tatt2mans case his relatives had the slow growing version of the disease and they died of other diseases. In my husbands case both relatives died of the disease and died young (age 60 and age 72). There is simply not much known about how the gene works but there is a risk that my husband's cancer will be as aggressive as his uncles and grandfathers and if so we would like to deal with this early.

The third reason is that we have considered the impact on our lives of urinary incontinance and ED.
The side effect that worries my husband most is possible long term urinary incontinance and urinary stricture. However we have researched our surgeon and his stats are no strictures in 500 surgeries and a 98% continance rate within 12 months. If, in 12 months my husband was continant and his PSA stayed zero for for the next three decades then this would be a successful outcome for us.

We have spent a lot of time researching this disease through the resources on this website and through books, research paper's and through the help of my sister who is a specialist in Internal Medicine. We are not making this decision on impulse or through fear. I imagine that many people would believe that we are in the "get the thing out of me and into a glass jar" brigade, but we are not. In other circumstances (e.g if my husband was in his mid sixties, or a different type of individual, or in poor health or with a different family history) we would likely have made a different decision. We can only speak for our circumstances.

Post Edited (An38) : 7/14/2010 9:16:26 PM (GMT-6)

Thank you Bronson.

An, your husband's case is a good illustration of the dilemma that most of us PCa patients face when trying to choose a treatment.  I can say with a high degree of certainly that I would not make the same choice that you have made, given the data you have provided.  However, I cannot say that your choice is irrational, wrong or uneducated.  I only hope that sometime in the future we will have testing that gives us more certainty and treatments that are highly curative with minimal side effects.

Good luck to you both and I hope the surgery and recovery are successful.

Tudpock (Jim)

Thank you, Jeff.  I appreciate your response.

David, I don't think this will help much, but my husband spoke with a dentist assistant about radiation therapy.  He said his father had great damage done during radiation for PCa and ended up with a replacement bladder.  I don't know if that means an artificial bladder?  It is understandable why you would want to vent.

An, perhaps you didn't see my written message.  I would also appreciate your support!  Your responses are so well-written.  I wrote:

Dear An,

 

I have been wondering what decision you and your husband have made.  Your husband's surgery is two days after mine.  I know you are gone now.  I hope you will enjoy your week long trip to a tropical island!  I did want to mention that Ron's (maternal) Uncle died of colon cancer, but that probably does not affect his case.  My prayers are with you and your husband.  I hope you will return home well-rested.

 

Best regards,

Aimzee

From what I have been told, most men will have it when they die, so i have not considered the heritary factor, you have it and that's all that really matters. I would tell any man to have his PSA checked, no matter what his medical history is. The average age is now 58 for men to get PC. It's changed my life and I haven't even had the surgery yet! August 24th!

Hi Aimzee,

We are the way back from the tropical island, I am writing from the airport. It was a lovely break. I hope your husband's issues are sorted soon - from your posts on other threads it does not sound like its much fun for him at all.

I know exactly what you mean about overwhelming DH, and I was very careful at the beginning in spacing our conversations down to bite sized chunks now and then. That really helped him and slowly he has become free in discussing options and ideas. This site really helps because I try to discuss other people's decisions, what impact this decision had for them and what this means for their day to day life. Also its good to have people like Jim and others questioning the point of view we've come to because it means that my husband has to think through what he has decided yet again. This is very important I think because once that prostate comes out it's not going back in. This is one of the big decisions in his life (and to a certain extent in mine). He has to be confident that its the right decision for him otherwise he should simply not be doing it.

Still, speaking from a wife's point of view, this is not easy. The sheer amount of effort to research this disease absorb the research and communicate it in a way that is even handed and concise is emotionally draining, partly because I am determined to keep my emotions out of the decision making process as far as possible. I have done a lot of research as part of writing my thesis at university so I am used to it but researching my husband's cancer was never part of the plan. I catch myself at odd moments, sometimes at happy moments with unshed tears in my eyes. The man I love so fiercely has cancer.

An

An38,

I just read your logic for choosing surgery ... wonderful.

Although there are no assurances for any of the treatment options, I feel you have made the correct decision.  I made a similar decision about a year and a half ago and although at times I wonder about the path not taken, to date the results have been good ... PSA's non-detect, continent after removal of the cath, and ED improving.

Best wishes to you and yours.

This is definitely a difficult situation. My situation was a bit similar. I have mostly female relatives, but the majority get some kind of adenocarcinoma in late middle age--breast, ovary, colon, even multiple cancers. I don't know if that influenced the decision about surgery, but it did lead me to get regular PSAs, which I had tracked up to 7.7 over 10 + years. My biopsy was more definitive but was a 3+3. I was 5 years older but very healthy. I guess what convinced me to have surgery is concern that PCA slowly gets worse, and over 20 to 25 years may catch up with you. In 10 years, very very unlikely to kill you. The other factor is having clear evidence that I found a surgeon with a well documented, excellent track record in >1,000 nonrobotic open prostatectomies. Without that, I would have shopped around a bit, and gotten another biopsy in a year. Also, I figured the risk of complications with organ confined prostate cancer was less (the surgeon doesn't have to "take the nerves" i.e., doesn't have to screw around outside the prostate). This has worked out for me because I was right about my surgeon (the same as logoslidat's) and I was lucky. If I didn't have a great postop course without incontinence or untreatable ED, I probably wouldn't feel good about my decision.

At 52, I might well consider surgery....but

1) you need to be absolutely 100% certain about the diagnosis, getting another biopsy if needed.
2) be fully informed of the risks of the treatment. Surgery is very safe these days, but the postoperative complications can be a bear. Having a catheter in for even just 10 days sucks. Women don't have any surgery quite as nasty as this one.
3) recognize that the data on the longterm outcome of this kind of prostate cancer is very fuzzy, and that the short term (<10 year) outcome is very favorable, even with no treatment
4) be absolutely certain if you're considering surgery, that you've picked the right surgeon. Forget the technology, it doesn't matter. Ignore medical marketing. Does your surgeon have detailed statistics on incontinence and ED in the patients operated on? Talk to doctors and former patients. Get a scouting report
5) be sure of general good health before the operation. If someone has severe heart failure, for example, they aren't going to live 20 years and should ignore the prostate cancer.
6) If there are any doubts...stall, stall, get another opinion, there is no urgency at all.

An38 sounds like you are doing all the things right. No need to justify the choices the 2 of you have made. Sounds like you have done all the homework and are comfortable with your decision. That is half the battle.

Cajun Jeff

I have to agree with you An....my husband had a very similar situation as your husband's.  He had a biopsy done in January and was told by his uro that it was suspicious. He told my husband that one pathologist said it didn't look like cancer but another pathologist said they thought it was.   That did not sit well with me so I began to research what a suspicious biopsy meant and could not find much other than it being HPIN or ASAP.  After a few days I had my husband contact his uro to find out that the local pathologist was unsure so they sent it Hopkins for a second opinion and it was reported as 1 core out 12 to be small foci (5% - .5 mm in size).   This is pathologist which the uro originally told my husband they thought it looked like cancer.  My husband asked this uro  At that point I told my husband that he needed to seek a second opinion which we did and his biopsy slides were reviewed at the hospital the doctor is affiliated with.   It was confirmed what Hopkins stated. 

My husband has surgery on July 12th and we received his final path report last week and the cancer was right side but that was not picked up on his biopsy just the left side.  All his margins were negative and his Gleason stayed the same at 6. 

So I think you are making the right decision.   It is known that the biopsy can miss cancerous cores. 

Good luck to your husband.