The New Prostate Cancer InfoLink
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Mary McCall
Female
Clifton Va, United States - Share
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Radiation
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ED and incontinence post-treatment
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Profile Information
- Have you been diagnosed with prostate cancer?
- no
- What brings you to the New Prostate Cancer InfoLink social network?
- My husband was just diagnosed with Prostate Cancer this week and we are trying to educate ourselves and are looking for help.
About The New Prostate Cancer InfoLink
Arnon Krongrad, MD
created this social network on Ning.
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I was diagnosed in 2002 (Gleason 5, Bpsa 6.7 T1C) and have been doing Active Surveillance ever since with Psa's a happlily bouncing between 6 & 11 and back again, although with a rising trend. Now at 58 and following major motorcycle accident trauma last year, with PSA's staying over 10 and now hitting 13.4, I suspect my PCa has reached a similar level as your husband's may be. I saw the best Brachytherapist in town last week, who seemed quite happy about my AS path, BUT I need to know where things are going, so I am scheduled for a repeat biopsy & scan next week, with the view for either more radical treatment or staying as is.
I can well remember the panic and anxiety that flooded my life on diagnosis in 2002 but once I had this in better perspective things become much more manageble.
I think much of the anxiety is caused by the unknown factor. Once that is more 'knowable', one can go ahead more easily no matter what the direction.
Best wishes to you and your husband. I shall update you on what path I take.
Shawn
You may want to read about proton beam therapy on this blog entry. Pay special attention to the comments by Drs. Glode and Sandler.
In general you can use the main site for all sorts of information. If you don't find what you want on the Site Map (tab upper right) you can try searching.
AK
Of course I would like to help in any way. It would be useful to have more information about your husband's case. I don't understand the part about the positive margins -- I thought they can only tell that after surgery. I'm no doctor but your husband's PSA of 15 suggests he may have an intermediate cancer. So it's not the best but there is a lot that could be done for him potentially.
The first thing to do is take a deep breath -- there is no need to panic. *Or to rush into any decision*. The one-size-fits-all treatment today is trobotic surgery. It may be right for your husband but you don't want to be pressured into anything. Your husband can delay surgery beyond August from what it sounds like. In the interim you can both come to a careful, reasoned decision. (I have an article from Harvard which found no difference in recurrence in men who waited up to 520 days to have surgery.)
I hesitate to recommend that people get medical info over the internet because it can be overwhelming and confusing and most of it is biased. But the one site I highly recommend is ENDOTEXT.ORG, an online reference for practicing doctors. I call it the "no-spin zone". It offers high-quality, updated information. Mostly I don't have a problem understanding it because I've had to read so many medical articles, but that's where I would start and you can ask people here if there's anything you don't understand. You have to start with the section called, "Endocrinology of Male Sexual Function", etc. and then you will get to PC.
Also, this site is good because there are many knowledgeable people here. I suggest that when you evaluate someone's advice you consider how long they have been dealing with the disease. There are things you can only learn with experience.
The main lesson I've learned in the 3 years of my husband's illness is that what matters most is choosing quality doctors and hospitals that you can rely on. Do not try to "earn your medical degree over the internet.". I hardly do research for my husband anymore because he has a doctor who excels in that. And I have peace of mind knowing he is in the best hospital we have access to (MSK). Somebody mentioned JH, which is the country's top-ranked hospital, and if you can go there consider seeing Dr. Alan Partin, head of Urology. I know some of his patients.
The most important thing you can do is seek out the best minds in the PC business and get a bunch of opinions *from doctors in different specialties*. I have a number of articles on my blog about ways to find good doctors and I or other people here can help you with that. As far as hospitals, look at usnews.com to see how the hospital ranks for *cancer* treatment.
The other important thing is not to blow off a second opinion on your husband's biopsy. I did that and regretted it. *It can be very hard to evaluate PC specimens, so you want a pathologist who does nothing but this all day long.* I can recommend some people.
I have a number of good articles on my blog for the newly diagnosed. I will give you the references at the end.
As far as our experience, we didn't think much about things between my husband's diagnosis and treatment. I read one book the urologist recommended, Dr. Scardino's "Prostate Book". In our meeting with the uro the discussion about treatment options was very quick. He said radiation can cause bowel incontinence, so that was the end of that (actually occurs in 1% of cases). The doc highly recommended minimally invasive robotic surgery and gave us the names of three doctors in that specialty (one was not covered by our insurance). He also said he wanted my husband to have the surgery done within 3 weeks iif possible so we were under a lot of pressure (couldn't even get an appt that fast!). Understand that a urologist is a surgeon by training and doctors tend to recommend their own specialties.
What I regret is not taking the advice of a very knowledgeable PC patient-advocate who suggested seeing at least one open surgeon because of my husband's Gleason 7, intermediate cancer. I live in Manhattan and have access to the best medical talent in the world, but we didn't follow through with it. What concerned me is that I called Dr. Guilloneau who was not on the recommended list but is a very experienced minimally invasive surgeon, and he rejected husb as a patient because of the Gleason 7 (max. was 6). That made me nervous and maybe it should have.
If I had to do it over again I would choose a doctor based on their overall reputation, knowledge and experience with PC, knowledge of oncology and surgical skill, if appropriate. Remember, you are hiring a brain, not a pair of hands. What's important is the doctor's experience, not the tool they are using. It's really hard for people, self-included, to grasp that.
Husb ended up having surgery with a highly regarded robotic surgeon at a top hospital. Very smart man and good surgeon. Extremely personable. But one thing I learned is that if you have a choice between a top gen'l hospital and a top cancer hospital, choose the latter. Unfortunately, my husband's surgery failed. He had a recurrence at 18 months. We also had a lot of problems with husb's doctor which arose out of a simple request to get his medical records.
I also didn't like the fact that the hosp pathology lab reviewed husb's biopsy slides before the surgery (the urologist told me there was no need to send them to one of the special labs Scardino recommended) and the result was so off it could have been on the moon. One things I am confident about is that the pathologists at MSK can read a biopsy slide.
My husband is doing well overall and in good spirits because the other parts of his life are going well in general (work). He has had radiation at MSK for a recurrence of the cancer. The treatment itself was painless. His first follow-up test was negative.
I think my husband was probably the right candidate for surgery so I don't regret it, but it does bother me to what extent they downplayed the consequences. My husband was left with good continence but completely impotent. That has been a trial for him over the past three years, although there are therapies for ED. I have to think all that has had an emotional effect on my husband.
If you have any other questions feel free to email me @ brainyblogger@gmail.com or I can give you my phone number if you like. I suggest you have a look at my blog, prostatecancerblog.net, and read the following:
"Newbies, Don't Rush It"
"Before You Rush Into Surgery"
"Prostate Biopsies Present a Challenge"
"Don't Skip that Second Opinion"
"How to Find a Good Doctor"
**Straight Talk for the Newly Diagnosed"**
"An Introduction to Minimally Invasive Surgery" (by Dr. Krongrad)
"Study Finds Minimally Invasive Surgery Lacking"
"Mayo Clinic Urges Caution About Laparascopic PC"
"Consider Adding Rad to Surgery"
Good luck,
Leah
You asked for some feedback on whether your husband's decision for surgery in late August is the right one. That depends on a lot of factors, and your profile doesn't provide much detail to go on. Here are some questions that would influence the decision:
- How has his PSA changed in the last several years? In other words: Can you provide the last three to six PSA values and dates of measurement?
- What exactly did the biopsy report say? How many cores, of what sizes, with what Gleason (if any) sum in each core, with what amount of involvement (if any) in each?
- Have there been any other biopsy reports, or second opinions on the first biopsy report?
- The first urologist who finds a positive biopsy generally recommends surgery, with little or no delay. This is usually not a good recommendation. From whom did you get a second opinion, and what exactly did it say?
- What lifestyle issues have you considered? For example:
- If he might want to father more children, have you investigated banking sperm?
- After surgery, he will no longer have any ejaculate. Is this a significant issue for you as a couple? For him as a man?
- After surgery, he is quite likely to have temporary erectile dysfunction, and quite likely to have some permanent diminution in erectile function. A similar likelihood exists with brachtherapy and external radiation, but it takes longer for the damage to become known. How significant a difficulty is this likely to pose to you as a couple, or to him as a man?
If I could have avoided surgery, I would have done so. I would have even contemplated it if my Gleason sum had been 3+4 instead of 4+3. (As it happened, my 4+3 was reclassified to a 5+4 after surgery, and so I benefited from having a pathology report examining the entirety of the prostate gland.)(I do, and I did.)
(It was, for me; I felt significantly diminished as a man, and it helped push me into a clinical depression.)
For me, surgery was not curative, but nobody could have known that going into it, and I don't regret the decision, given the limited information I had going into it. Eleven months later, my erectile function is still poor, although slowly recovering, and my continence is imperfect, although not really a problem. My overall quality-of-life, emotionally, took a significant hit; but this may have been because of my unusual case and failure both of surgery and of a followup clinical trial.
I wish you and your husband well. From the limited information I have about him, it seems as if he may be going into surgery prematurely, without full information about the consequences and alternatives. (On the other hand, for all I know, you've already received second, third, and fourth opinions, have gone through several counseling sessions, and are completely well-informed and at peace with the decision. If so, please forgive my jumping to conclusions.)
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