Now that my brief journey with prostate cancer was over, there was only the PSA test to confirm it. In mid-May the PSA came back at 30.55 and a second test a week later scored 31.5 - the cancer was still present and very active! I was now assigned an oncologist at the adjoining Dana Farber (DFCI), initially Dr. Taplin for two meetings and then Dr. Oh.
A battery of tests - MRI, CT and bone scans followed. I discovered that when the cancer is thought to be confined to the prostate, there are many options; once it is loose in the body, there is only the bitter cup of hormone therapy. A suggestion from one oncologist was that I have radiation to the lower abdomen as a way of dealing with any residual cancer there. Dr. Hu appeared to take it as an affront to his surgical skills, that he had gotten all the cancer at the site and it was now in micrometastasis in the bloodstream. I did not have the radiation.
I began hormone therapy at B&WH with a Lupron shot on 20 July 2007 by which the PSA was now 55. From my readings I was very nervous about this drug and its side effects. It has a mechanism of shutting down testosterone production in the testes. I refused the drug Casodex which shuts down testosterone production in the adrenal glands. I was upset to learn that I had received a 3-month shot instead of the 1-month shot I had requested, and was in a poor frame of mind when I met Dr. Oh shortly afterwards. That night an intense headache began that is still with me to this day.
Other side effects followed the headache. I had intense mood swings and felt like there was a burning rage trying to burst out of me, hot flushes & perspiration, and at times it felt like my internal thermometer was broken. There were many moments of fatigue and poor concentration. I couldn't look people in the face and they seemed like objects. Worst of the lot were suicidal thoughts.
In the meantime one side effect of robotic surgery began to appear. Frequent #2's meant lots of trouble with bleeding from haemorrhoids, and I saw a surgeon at Tufts NE to band the veins that he could reach. As time went along it appeared surgery would be inevitable.
Despite the side effects, the Lupron was working. The PSA dropped, first to 16.5, then 8 and a slow trip through 4.8 to 4.6 to 4.4 to 4.25 and in January 2008 Dr. Oh pointed out that additional help was required to get the PSA down through first the 4 and then the 1 barriers. I noticed that the testosterone levels were 30+ and accepted his advice to take the Casodex.
On 27 March 2008 the PSA rose to 7.0 but the testosterone levels were up too. Dr. Hu told me to stop the Casodex, but I refused the next Lupron shot as well. As far as I was concerned it had failed, and the side effects were now so intense that I could not tolerate them. Dr. Hu then broached for the first time the option of castration, and perhaps did not sell it well by suggesting that it would have the same effect as the Lupron. No way did I want to swap a temporary miserable state for a permanent one!
In March I had PPH surgery at Tufts. The best way I can describe it is as an "internal bum-lift". It is certainly easier than the traditional "slash and tie" surgery I had back in 1987 which helped me redefine pain. This dealt with the haemorrhoids in a fairly comprehensive fashion.
Without the Lupron I started to get my head together. In a brief oasis for this journey I had a short period of time in which I felt "normal" or whatever now passes for that! No more mood swings, no thoughts of suicide, renewed energy - it was great! The headache was still there but at a lesser intensity. I feared Lupron and if that was the only other choice I was prepared to accept death. At least I would be me.
At this point my health plan (Patient Advocates) began casting about for other options.
History of Lupron therapy:
PSA Testosterone DHT
Normal 0.0-4.0 241-827 30-85
20 Jul 07 53.8
Commence Lupron with Dr. Hu at B&WH under supervision of Dr. Oh. Immediate headaches and fatigue.
Sep 16.5
Nov 4.8
Dec 4.4
Jan 08 4.25
Added Cadodex as Dr. Oh concerned PSA drop had reached plateau. Need to get <4.0 and then <1.0
Feb 4.25
Mar 7.0
Refused next Lupron shot and stopped Casodex. Symptoms diminished as testosterone returned
23 Jun 55.5 258 230
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