Join Date: Nov 2007
Location: Annandale, VA, USA
Re: Husband just diagnosed...
Hi again prius 2008,
I'm inserting some comments in green to help keep them straight. That's a bummer that the doctor never called with that suspicious PSA result. I'm guessing he was a family doctor, and so many such doctors just do not know that much about prostate cancer. I've got some more comments on that below.
My own story was nearly a lot like that. I had a routine physical in December 1999, and, despite my father's death from prostate cancer noted on my history form, and despite the fact that I was 56 years old, the doctor said he did not feel I needed a PSA test when I asked about it (my first ever). Fortunately, I insisted. Was he ever embarrassed when the report came back at 113.6 a few days later!
Originally Posted by prius 2008
Thank you so much for your reply and all the additional info you provided. You're welcome, and I'm sure I speak for daff too when I say that we are glad to be able to help. Many folks have helped us, and it's good to be able to give something back. You and your husband will be able to do that some day.
Both my husband & I feel surgery is the right step. I should have mentioned that the doctor recommended both radiation & hormone therapy following the surgery. I'm really glad to learn that the doctor wasn't counting only on surgery. A combined program could be the best choice, but I hope you both have input from radiation and medical oncology doctors before having the operation. By the way, I too was all for surgery before the excellent doctors at Johns Hopkins rejected me , quite rightly in the circumstances .
Who would be managing your husband's care, overseeing the whole show? In my opinion, a medical oncologist would probably be the best choice, especially if the surgeon has limited experience with challenging cases. I have come to a strong opinion that urologists (surgeons) just don't know enough about hormonal therapy to do what their patients really need from that part of the total program.
Unfortunately, urologists often think they know to manage hormonal therapy (and some of them do know). For instance, has the surgeon or other doctor ordered a Bone Mineral Density scan? Lower than normal bone density is epidemic among prostate cancer patients, and main forms of hormonal therapy tend to decrease bone density even further. That's a fundamental reason why I and my excellent team of urologists concluded I would be better served by a medical oncologist they knew well. While they were really not familiar with the bone density issue, despite my concern from the reading I was doing, the medical oncologist appreciated the situation immediately and prescribed a bisphosphonate drug (Fosamax) plus calcium and vitamin D3 in support even before getting BMD results, which he also ordered at once (result was osteopenia, well on the way toward osteoporosis, now better). That was back in 2000, but it is very clear that urologists as a group have been slow to pick up on this threat, which can be countered quite effectively.
Of course, this would be based on lab examination of the prostate & lymph nodes after surgery. I hope you both have a chance to read about staging with Combidex or with Fusion ProstaScint. The problem is that sampling lymph nodes just isn't that reliable. The danger is that the sampled nodes might be negative, prompting a decision to dispense with radiation and hormonal followup, when cancer actually exists in other, harder-to-reach, unsampled nodes. The article on Combidex in the LEF magazine (March 2009) says that "30-40% of [positive] nodes can be missed by surgical exploration itself. Up to a decade or so ago, node sampling was about all we had to work with, but that has radically changed. In one study, Combidex had a negative predictive value of 96%. That means there is only a 4% chance of missing a positive node if the Combidex report is negative.
Thanks for the reassurance that the cancer is not so likely to spread to the bladder & bowel. I remember being glad when I learned that myself.
The doctor said the clear bone scan was just huge for my husband. It really is huge, based on what I have learned. I remember how happy and surprised I was when I learned my bone scan was negative. Since your husband has a challenging case, however, it is worth knowing that bone scans only detect cancer when 10% or more of the bone is involved. They are not perfect. However, you are fully entitled to enjoy the rights and benefits of a negative scan for predicting success. Even if the scan missed small pockets of cancer, it still has documented that there are no large pockets. That matters!
As daff suggested, an endo-rectal MRI, especially with spectroscopy, could also be a big help in picking the best approach. I did not think of that because that is more for the local picture and I was thinking of farther off mets.
Our PSA story is kind of sad. My husband had a PSA of 3.02 in 2002 and another PSA after that for which we do not have the score but it was reported to him to be "OK". In 2007 the PSA was 5.32 but the doctor at our rural med clinic never called to tell my husband the results of that test. Unfortunately my husband thought that meant everything was still "OK". In 2008 his PSA was 7.69. A different doc at the clinic recommended that he see a urologist ASAP. One & a half years passed between the 2007 test and the 2008 test. So much for early detection! We're so sorry that we lost that time but it does little good to look back.
But it is so fortunate that your husband was tested then, even if it was not reported. That's because you now have a good idea of the rate of increase for the year before diagnosis, and that gives you vital forewarning so you can adjust the strategy. Unfortunately, that increase for your husband is greater than 2.0 , and a team led by the highly respected prostate cancer researcher Dr. Anthony D'Amico, MD, determined that risk is substantially higher for such men, in addition to risk indicated by the current PSA level, Gleason, and staging, unless the cancer cannot be felt during the DRE (papers from 2004 and 2005). With the forewarning provided by the D'Amico team, patients can now realize they are at ground zero and can do more to move away. The D'Amico papers have been rapidly incorporated in the thinking of many doctors. They really are a very big deal! I'm confident they will be incorporated into the Memorial Sloan Kettering nomograms before long. (They are not there yet.) On the other hand, it's important to remember that some of the discouraging outcomes they document are with patients whose doctors were not forewarned of the added risk, and who were treated in years before the more modern approaches of today were available. That will make a difference for the good.