Dismay? Disappointment? after visit to specialist

Hello All,

Some of you might have read about my husbands biochemical recurrence after his primary treatment of Hormone Therapy, TURP, High Dose Brachytherapy and External Beam. Everything was ok for two years, then PSA started creeping up, until it has now reached a doubling time every six months. Husband has had a bone scan in the last 2 weeks, and it only showed up sclerotic sections that radiologist attributed to degenerative changes of age.

We went to see our specialist on Monday, fully expecting that, given the PSA doubling rate, PSA now 1.5 up from 1.4 only 4 weeks ago, and the aggressive, advanced nature of the original tumor (G9 in majority of 12 cores, G7 in one core, and one core clear) he would suggest a pre-emptive, proactive strike and at least begin hormone treatment again. We had read articles where this was the preferred option, and certainly many of you on this forum agreed.

Specialist was very good at explaining situation. He did admit that there is cancer there somewhere, and that any benign prostate tissue left behind would still be putting out a bit of PSA, but would not account for the doubling rate. He also said straight out that this was a biochemical failure of the primary treatment. All was ok until that point.

Then he said that given the nature of the original problem, they (the team) had hit the cancer with all the big guns, and that husband had received massive amounts of radiation and hormone therapy.

In a nutshell, he drew a line on a sheet of paper, and said that X was the end point (death). Time unknown. He then intersected the line close to the start and said that if husband was to receive treatment at this point, then he would have to endure all the nasty side effects of such treatment/s until reaching X. If on the other hand we waited until a point closer to X when PSA was really high and mets were quite evident.....THEN X WOULD STILL NOT CHANGE. IT WOULD STILL STAY AT THE SAME POINT OF TIME. In other words, no matter what we do, we cannot change this.

My husband was quite happy and relaxed about doing nothing, and just waiting and watching.

On the other hand, I was breathing fire! I wanted to go in, guns blazing and shoot anything in the body that even looked remotely malignant. However, I had promised my husband some time ago, that decisions were ultimately HIS, not mine... although like any wife, I certainly put in my two bob's worth... often!

End result... we do nothing until Feb when new information (PSA results) present themselves, and just keep surveillance.

You might suggest we change doctors, but HE is the fellow that others are referred to as a second opinion. We were very lucky to have got him right from the start.

Now we are off to the Cardiologist to see her about husbands latest heart problems. Where does this all end?

Rats!

yaamba,

actually, my oncologist and I have been following a similar approach since 2010 when my SRT failed quickly after my initial surgery failed. We are waiting and watching.

So far, I have manage nearly 6 years without any advanced treatments, have had PSA's above 50 several times, and an unexplained drop, and now its slowly rising again, yet multiple bone/body scans show no evidence of mets.

Is it a gamble? Absolutely. Considering what a miserable quality of life I live with severe chronic pain and fatigue, my doctor and I didn't see the point of subjecting me to additional QOL issues with no guarantee that they were needed, or if they would even help.

The first time I light up on scan, all options will be back on the table for me, including HT and/or chemo

I would never tell another person what to do with their health decisions, this approach is working well for me. I am constantly aware that I have Stage III metastatic PC, but so far, its not directly harming me. So I choose to continue to watch and be prepared if my situation changes.

Only wrote this, because I don't think your husbands doctor is out of line. I know many here will probably dispute what I am saying, but that is ok. You need to hear all opinions in this matter

Prayers for a peace that passes all understanding.

I'm surprised he didn't want to start hormone therapy earlier, especially given that the TOAD study was done in Australia. Did you ask him about it?

Hormone therapy can take a lot of forms, ranging from a single Casodex pill a week, intermittent ADT, to multiple hormonals.

Sorry you have to deal with the "do nothing for now" philosophy that your husband thinks is best. As a care giver, you have a hard job and I feel for you as I do for my wife when she wants me to do something I don't necessarily want to do. For both patient and caregiver, this is a rough journey sometimes. Hang in there yaamba! I know your husband appreciates your great support and all you do. Take care. -JR