Senior Veteran (male)
Join Date: Nov 2007
Location: Annandale, VA, USA
Re: My Husband has Prostate Cancer - now what?
(I hope my wife does not see this greeting - she might not understand.
I'm inserting some comments in green, and I hope you get some other responses. Jim
Take care and good luck,
Originally Posted by Wildewoman
My husband got the call on Thursday night from his urologist - following a biopsy the previous week - the biopsy was done because the urologist said his PSA was elevated. It would help us understand your husband's case if you would be willing to share key information. I'm thinking his case is probably low risk because of the options recommended, but we can help you be better prepared if you can share the information. The key things we need to know include:
his last PSA level and date of the test;
any other PSA tests in the last year or two and their dates, or approximate dates;
his "Gleason Score", broken down into the two Gleason Grades as in 3+3=6; sometimes a third score is given if there is any grade 5 cancer that is not covered in the primary (most common) or secondary (second most common) grade;
how many biopsy cores were taken;
how many of these were positive for prostate cancer, and what percentage of each core was positive;
the location of each positive core;
his stage, usually based on the DRE (Digital Rectal Exam), as in T1c, T2a, T2b, etc.;
other key overall health aspects, such as his level of fitness and health overall and any significant problems.
This may seem like a lot, but you and your husband also need to have a good grip on all of these key facts. It won't be long until you both see how these facts can help clarify the options, perhaps making some of them much less promising and attractive while favoring others.
Your husband is entitled to this information, and it can be requested on the phone, but you should also get the written record of your husband's PSA test result(s) and his biopsy report. Then make it a habit to request and file all his medical reports. This can be of great value!
The urologist told my husband that we need to meet with the Cancer Team - a urologist, a radiologist & some one else he can't recall in February & discuss my husbands options. I'm impressed with that approach - including other opinions from other specialties right up front. That should be standard practice, but unfortunately, that is not the case. I'm thinking that the third specialist is probably a "medical oncologist," a doctor specializing in cancer who uses drugs as his main tools and does not do surgery or radiation himself. (That's the kind of doctor who has managed my own challenging case since late 2000.)
I'm also impressed that the doctor has not jumped straight to a bone scan and a CT scan, assuming your husband has a low risk case. Such scans are almost useless, as a positive result is extremely unlikely if the case is low risk, and if something there is missed, it will probably turn up pretty fast. That said, we had a recent poster on this board who was in the half percent or so with a positive result on one of these scans. (Part of the issue is that the CT scan can only see fairly large tumors in the lymph nodes, while the bone scan can only suggest prostate cancer when 10% or more of the bone is involved; both events are extraordinarily rare when prostate cancer is caught with regular monitoring.
He was told he has 3 options: These are the main options, but there are other options, and there are sub-options within each of the three below.
Here are some of the other options:
a. Cryo surgery (freezing the prostate - now an accepted, standard treatment and much improved over a decade ago - no longer investigational), including focal cryo surgery (only a part of the prostate is frozen);
b. Primary one-time or intermittent hormonal blockade with drugs - Quite a few of us are using this approach, though it is usually not mentioned as an option by doctors. One version - one-time triple blockade for around thirteen to eighteen months with a mild maintenance drug after that - has enjoyed striking success in a couple of practices. Unfortunately, while it can offer outstanding long-term control for many of us, it is not often curative. Also unfortunately, it is classed as investigatory and few studies of results have been published in peer-reviewed medical research journals, which is a key indicator of acceptance.
c. HIFU (High Intensity Focused Ultrasound) - available in Mexico but not yet in the US. I'm personally not impressed with the success record published for low-risk patients at this point in the development of this therapy.
1. Surgery to remove the prostate Main options include DaVinci robotic surger (very popular these days), laparoscopic surgery, and conventional open prostatectomy in either of two forms.
2. Radiation Main options include brachytherapy (seeds), very popular, usually as a one day procedure, but also available in a high-dose version over several days with the radiation source not remaining in the body; external beam radiation - especially these days advance forms of what is known as IMRT (Intensity Modulated Radiation Therapy), including "TOMO,"; proton beam radiation therapy; rarely neutron beam therapy; combinations of these; and recently emerging and still investigational, CyberKnife with Stereotactic Body Radiotherapy dose delivery. I've left some out for simplicity.
3. Do nothing There are two main versions - "watchful waiting" and "active surveillance." Watchful waiting, in its pure form, is basically doing nothing and living your life with the hope that symptoms will not develop - hoping that the cancer is "incidental" and will never become serious, and not starting some kind of therapy until symptoms develop, which is often at a pretty late stage. In view of other options, this to me just makes no sense these days.
The active surveillance option is far different. Soundly done, patients are carefully screened to avoid risk profiles that often lead to the need for therapy soon. Patients normally will have PSAs of 10 or less; no increase exceeding 2.0 in PSA in the year prior to diagnosis; Gleasons of 6 or lower with no Gleason Grade 5; staging of T1, T2a, or T2b; a low percentage of biopsy cores that are positive, and ideally a low percentage of each positive core that is cancer; no cancer in a location near an easy exit from the prostate capsule; and, if bone or CT scans were done, negative results. Monitoring is fairly frequent in the first year or two, often including at least one follow-up biopsy. Diet, nutrition, supplements, exercise and stress reduction tactics are often implemented to stabilize or reduce the cancer if possible. Mild medications, such as finasteride, Avodart, and statin drugs may be used to combat the cancer, and some drugs such as bisphosphonates (Fosamax, Boniva, etc.) may be used in support. Both doctor and patient expect to move to an attempt at curative therapy quickly if monitoring reveals the cancer is becoming aggressive. A number of major centers in the US and world, including some of the US's top prostate cancer surgeons on the teams, have vigorous and successful active surveillance programs.
My husband will be 62 in 2 weeks. We are both overwhelmed at this time.
We leave for an 8 day cruise in 5 days. Please get back to the board, as I think we responders will be able to give you a lot of reassurance and good information before your cruise. Even if we cannot, I like your style! Prostate cancer should be just part of the life of a survivor and wife, hopefully a very small part after the early days.
When we got the high PSA test we decided - lets just do the biopsy before our vacation so it's done & we won't have to worry about it.
Now, I feel like I'm worried about everything. Been there, done that. I wanted to get in a long overdue annual physical in December 1999, though my wife wanted to put it off, with Christmas approaching and the remote possibility of bad news. I assured her I felt fine. Well, I got a PSA result of 113.6, and our life was way out of balance for a while.
I'm trying to find out as much as I can before the appointment That is an outstanding idea. The best book for orientation I know is "A Primer on Prostate Cancer - The Empowered Patient's Guide," by Dr. Stephen B. Strum, MD, and Donna Pogliano. It has great information, graphics, an index, and space for notes.
~ my husband said - "lets just do what they recommend." Heavy sigh . . . . Not a good approach! This needs to be a personal choice, but with input from the doctors. Your husband probably needs a little time.
I'm not sure I like any of the 3 choices . . . .I wish there was a 4th option!! Reread above!
Last edited by IADT3since2000; 01-17-2009 at 08:07 PM.
Reason: Spelling. Added: hormonal not often curative, and medications in support of active surveillance.