I'm so sorry you and your husband have been so rudely recruited into our club of prostate cancer survivors.
While we have fine members, none of us wants to be here. This post is long, but I've been on some of the paths you and your husband will be on soon, and I think that your knowing about some of what I've experienced will be helpful.
You deserve extra credit for getting right into researching the disease.
It took my wife and I a few days just to get over the stunning news, in circumstances that were eerily like those you describe; we did not react so quickly. I too was "only 56" (back in December 1999), and I was also way overdue for a physical, probably at least five years. (That seems really strange now as I see doctors so frequently!) I too had a high PSA, 113.6 - my first ever. (I had to insist on the PSA - the doctor did not think I needed one after he completed the routine physical.
I could tell he was embarrassed, as he well should have been, when he gave me the bad news a few days later.)
The circumstances you describe mean that your husband's case will be challenging, but I'll give you some important good news: there has been great progress in managing challenging cases of prostate cancer in the past decade,
though it is still far from a cake walk and there is no guarantee of survival, especially for those of us with difficult cases. Even for those of us with challenging cases, years of enjoyable life with a fair shot at outliving the disease are in store for us, except for rare cases, less than 1% of all prostate cancer cases as I recall it. Having a Gleason 9 or even a 10 is not enough to put you in that unfortunate group, which includes rare cases like "small cell" and endometrial prostate cancer (so named because the cells resemble the condition some women experience). (There has even been some progress for their cases.)
Here's an important caution and something you both might want to get familiar with: if the doctor wants to give your husband a hormonal therapy shot, it is very
important in the circumstances you describe that your husband first go on "antiandrogen" pills for a week or so before getting the shot. The shots, probably either Zoladex or Lupron, act by shutting down production of testosterone by the testes. They do it by first boosting testosterone production, which makes the body realize it's getting too much, so it then shuts down production and keeps it down. However, that brief boost, known as testosterone "flare," is dangerous for some men. If a man has prostate cancer metastases in his spine, the flare can cause the metastases to suddenly grow enough to fuse the spine and criple the patient, often irreversibly.
Using an antiandrogen, typically either the drug Casodex or the drug flutamide, for a week (or more likely two weeks) before getting the shot will prevent this flare and will also start fighting the cancer. While flare for many of us who do not already have spinal metastases is a minor matter, prevention is wise for those who might be at risk. Your husband is at risk (in my layman's opinion - no enrolled medical education), because of his symptom of back pain. That symptom might be due to spinal metastases.
It's likely your husband's doctor is aware of the potential problems from flare, but in 2000 probably the majority of doctors were unaware, and I'm not sure how much the situation has improved. You or your husband might want to call the doctor's office in advance and talk to him or his staff about the issue of flare. If it were me, knowing what I do now but newly diagnosed and with a PSA of 44 and back pain, I would not accept a hormonal therapy shot without getting antiandrogen protection first!
Another way to shut down testicular production of testosterone is through the surgery known as "orchiectomy." This method does not result in flare. This is the fastest, and by far the least expensive method, but it is also irreversible. Many of us, like me, are glad we are on intermittent hormonal blockade therapy, achieved with medicines instead of surgery.
I hope I haven't scared you by raising the prospect of spinal metastases. Hopefully that back pain is just due to your husband's construction work. Once again there is some very good news that separates prostate cancer today from what our fathers and grandfathers faced. First, hormonal blockade therapy is usually highly effective at decreasing the impact of prostate cancer metastases throughout the body, at least for a time, the length of time depending mainly on how widespread the cancer is in the bones, lymph nodes and elsewhere. (Many doctors who are not experts in hormonal blockade therapy greatly underestimate its effectiveness and the length of time it works well to control the cancer.) But there is another important class of medicines to use as well known as bisphosphonates. I'm now on one of them, Boniva, and was previously on Fosamax (no detectable bone mets for me, but used to rebuild bone density and help protect against mets). Zometa is a much more powerful intravenous bisphosphonate that can actually reverse some bone metastases. For the right patient, it is a miracle drug!
To me there is one book that every survivor with a challenging case of prostate cancer should study: "A Primer on Prostate Cancer - The Empowered Patient's Guide," by Dr. Stephen B. Strum, MD, and Donna Pogliano, well-known PC activist and wife of a survivor. It is the best on issues like flare, staging of the disease, the tests, scans, and exams that can be done, and medications like bisphosphonates. It also has an appendix with many forms that you can use to record all the key medical data you will be getting in an organized way. The forms will also help you see when the doctor hasn't given you all the information that you should have, so you can remind him when he might still remember or can easily access samples and scan films.
Bone scans and CT scans are usually not worth doing for low-risk cases, but they are highly worthwhile for challenging cases like mine and your husbands. (Mine were surprisingly negative.) If they turn out negative, then a more expensive but highly useful fusion ProstaScint scan probably will need to be done, though many doctors are still not up to speed on that scan. (The Primer describes it well, as well as the older version ProstaScint without fusion which I had - also turned out, again surprisingly, essentially negative.) The fusion ProstaScint is excellent at detecting and displaying prostate cancer metastases in soft tissue, including lymph nodes, throughout the body. It is capable of detecting much smaller deposits of cancer in nodes than a CT scan can detect.
Before you leave the doctor's office, be sure you know at least this information:
- the stage (mentioned by daff);
- any prior PSA results and dates of the tests (with actual reports of the tests if possible so you have a record of the lab that did the test and what kind of PSA test was done - there are several, using different parts of the PSA molecule, and results vary somewhat though not greatly).
- copies of the biopsy, bone scan, CT scan, and doctor's notes (your husband has a right to them). Among other purposes, those can be very useful in talking with other doctors, including second opinion doctors. Second opinions are par for the course in prostate cancer, as the disease is too complex for one doctor to master it all and to master more than one or two of the treatments, in my opinion. (Counting my initial, surprised family medicine doctor who reluctantly did the PSA at my insistence, I had at least ten face-to-face consultations before settling on a therapy.)
The books that daff and I have mentioned list other questions to get answered at the consultation.
Here's another tip from my own School of Hard Knocks. Before he starts therapy, probably about at next week's appointment would be wise, your husband should get another PSA test from the same lab/same test as on May 2, and with no romance, bicycle riding or horseback riding for a couple of days before. That will give you and your husband a fairly good idea of an important statistic: the PSA doubling time (PSADT). I started treatment within about three weeks of my first ever PSA test and never was able to determine my baseline PSADT. That statistic can be tied in to a number of research studies that bear on our prospects and tactics/strategies for managing our cases. It's particularly helpful if you know the PSA velocity in the year prior to diagnosis: if it's 2.0 or less, that indicates a case that is less challenging than it would otherwise appear, and vice versa. Even if you don't know about the year prior PSA, as seems likely as your husband was overdue for a physical, knowing the PSADT and projecting for a year at this time would probably enable you to judge what group he falls in. IF
the cancer is clearly contained in the prostate, which regretably is unlikely in your husband's circumstances but still possible for a minority of patients with Gleason 9 disease and a PSA over 10 (compare to cases in the "Partin Tables"), then a local attempt at cure could still be possible and reasonable, most likely with other therapy (such as hormonal therapy) as a backup. Even if it is not contained, a local therapy might be advisable to knock down the cancer as much as possible, but that call is harder to make, as you have to consider how much it is worth in view of likely side effects. I went straight by local therapies to hormonal blockade and have done well, but without a real shot at a cure.
"Medical oncologists" are the class of doctor most experienced with non-local therapies, and it would be a good thing to ask your husband's urologist if he can recommend one who is experienced with prostate cancer in order to get that viewpoint, and perhaps to take over management of your husband's case. From my viewpoint, most urologists are just not as effective in dealing with challenging cases as medical oncologists.
There's another wonderful book that is especially good for those of us facing difficult cases: "Beating Prostate Cancer - Hormonal Therapy & Diet," by Dr. Charles Myers, MD. It starts out with a section on the importance of hope and optimism, and that is what most of us need, at the beginning more than ever. It covers many key topics, and it includes awesome success stories for some men with horrible cases - PSAs in the thousands. It is also easy to read. (It helps that Dr. Myers has and is facing his own challenging case of metastatic prostate cancer, diagnosed in 1999; he's doing very well.)
I hope this helps. Both of you hang in there and keep your spirits up!
Originally Posted by MyDan
This is my first time on the message board - I've read the rules but please bear with me if some of this has been covered already. Today the doctors told us that my husband has prostate cancer. He was in for a regular physical May 2nd (after not having one for 5 years). He had been complaining of a lower back ache for over a month but we put if off to his job (heavy equipment operator). His PSA level was 44.4. We saw a urologist on May 13th for a biopsy (8 samples) and today we were told his Gleason grade is 9. We had a CT scan and bone scan today but haven't gotten results yet. On May 29th we have a consultation with his urologist again - can anyone tell me what to expect or any ideas on what lies ahead for us?
Thanks in advance for any help you can provide - My Dan is only 56.