My head is spinning

AT a risk of boaring everyone, here are the highlights of my story that led to a situation I find myself in. Any thoughts or suggestions are highly appreciated. In November 2007, at the age of 46, I was diagnosed with PCa. (Stats below). Six rounds of chemo to shrink the tumor and address a high-risk nature of my cancer (Gleasson 4+4=8, PSA 28+, family history). Then open surgery at Duke. The pathology report said organ confined disease, except for a single 4mm surgical margin. Gleasson downgraded to 4+3=7 (possibly as a result of chemo). Both my Duke and Sloan Onc felt no further treatment is needed. Post surgery PSA undetectable for 8 months, then started rising again. So, my thinking was that there is a decent chance that this was a local recurrence and I would need to do radiation treatment. What I thought I need to decide is where to do the treatment - locally in Central New Jersey or at Memorial Sloan Kettering - MSK - in Manhattan. In conversation with the local Radiation Onc, he brought up radiation to lymph nodes as part of the treatment. I though it makes sense - a little extra insurance. Then I went to MSK yesterday and my world has changed once again. Turns out MSK has requested my pathology slides and did their own post-surgery study. (Not sure how this works and why I never saw the results - thoughts anyone?). MSK found multiple focal extra prostatic extensions, in addion to what Duke reported (positive margin, perineural invasion). The conversation went something like this. Doc, We reviewed your history and it would be right to do radiation to prostate bed and it would be wrong not to do it. (So far so good, I expected this). Me, Do you think lymph node radiation is in order. Doc, the lymph nodes were negative on the pathology report... you could do HT with pelvic radiation if you wanted to be most aggressive, but this is a gray area. Me, HT? Why HT? Doc, it does not make sense to irradiate pelvic area without HT. The radiation doze that could be delivered to pelvic nodes area is a lot smaller than prostate bed, so alone it does not kill the cancer. HT helps radiation kill the cancer cells. At this point I am very troubled. I read about HT with Radiation, but thought they were independent weapons, so you could do radiation with HT, or radiation followed by HT if it does not work. Doc (looking at my chart again), You had a pre-op PSA of over 30, I am looking at your pathology results and it is consistent with someone who's PSA was in the 20s; this PSA had to come from somewhere - you might have had micro mets prior to surgery. You definetly need to consider radiation with HT - Casodex and Lupron. Two month prior to treatment, two months during the treatment, and six months after. Me, if HT "softens" the cancer for radiation to work better, why do you need HT after the treatment. Doc, We don't know, but it has significan survaval benefit. The theory is that radiation continues to work even after the treatments are done and HT helps it. We left it that I need to make a decision between radiation to prostate bed vs. radiation (including pelvic nodes) and HT. So now I have questions.... - How could two reputable institutions read the same pathology differently - Does "focal EPE" still means stage 3? - What is the "standard" treatment for T3a PCa with positive margins? - Why did the MSK Radiation Onc did not lead with radiation + HT recommendation, but delivered it as an afterthought, in response to my question? - What alternatives do I have in addition to the two he outlined? - Anybody out there with similar staging - what treatments did you choose and what was the rational? Thanks a lot to all of you PCa brothers (and sisters) out there who encourage me every day by your stories, your advice, your humility and your determination! Greg  

Geebra,
The first thing is to confirm lymph node involvement. The best method to do this is with a Combidex MRI which is only done in Holland and is 96% accurrate. This will allow a decision to radiate the lymph nodes or not to radiate.
HT is recommended along with salvage radiation unless it can be positively acertained that the reoccurrrance is local.
Your Doctor is correct, a gleason 8 tumor should throw off a lot less psa than 30, so the psa must be coming from somewhere else. You may have micromets.
I would get a 2nd opinion from one of the top prostate oncologists even if I had to travel to see one.
Good luck.
JohnT

The truth of PCa is that the doctors only can detect or know its where abouts in limited fashion. There are no guarantees with PCa, ever and even for low stats/risk patients it is not 100% guarantee of cure no matter how great the surgeon or method of treatment(s). It is a best guess scenario a s.w.a.g. estimate, using imperfect data, testings, scans and protocols, etc.

Now some docs could or will be honest enough to tell you such, some others will never admit such and sell the patient what they might like to hear.....yeah your salvage radiation will take care of it (or such)...it could do such is the real answer and it also could be done for nothing or very limited results. Just being a realist on what patients are facing, not the glass half full or empty, but more of is their a glass and where is it??? Some patients get taken advantage of in medical things and that is unfortunate and it is part of the culture of greed and profits, what a country. Tons of money wasted on scans, especially in low stats patients (see Dr. Strums data and books, an onco-doc of world class honesty on PCa issues).

John T would know the most about Combidex, I think he would even say that micro mets could be missed by Combidex and it is missed often by all other scanning equipment that is available.
People put way to much faith in a given doctors verbage or opinion (he is the expert, yada...yada..yada) it is his opinion just like his opinion on politics or whatever, PCa is not a black and white perfected science or calculation type of thing. My guess and experiences lead me to believe that most surgeons do not even bother to learn things for PCa treatments outside their own specialization (sure they know of a few drugs or things, and so do you without a degree or schooling). So you will be given a sales pitch on their craft of perfection and they will be usually biased and they usually will not get emotional about your possible recurrence or problems after their modality is done on you. Understandable as they cannot get wrapped up in people personal lives, least they break down and become ineffective and unemployed perhaps.

My thoughts for PCa- get mulitple opinions, get mulitiple questions answered by other patients-internet-books-journal articles etc.-read anything even the controversial or negative stuff about treatments, learn something from any PCa patient (yananow mentors etc.), then weigh all that collective information and reach your own conclusions as best you can....then decide what you wish to consider doing, maybe in conjunction with your chosen doc. The other side of this is do whatever Doc-X says is best, which can be highly biased, highly profitable, full of return visits and perhaps in his best interests and if it happens to serve you well all the better. I could be wrong or biased, but based upon my own experiences and 8 opinions and years of internet boards and discussions, leads me to these conclusions. I am well served by getting those 8 opinions, that was a priceless education in the real world of PCa.

Dx-2002   total urinary blockage, bpsa 46.6  12/12 biopsies all 75-95% , gleasons 7,8,9's .  Got 2-surgeons opinions- one guaranteed a cure (wow-sales pitch)   second LRRP reknown surgeon-'I won't do surgery on you'   (I got 6 more opinions thereafter and plenty of education via searching)

Thank you! I plugged my numbers into the MSK salvage radiation calculator and it comes back with 72% biochemical recurrence free probability at 6 years. I guess this makes it almost as good as my numbers were at the surgery. So, this is a second chance? You dont get a lot of those in life. I want this one to count. Tomorrow is the MRI (both docs do not expect it to show anything, but want to be on the safe side). I will try to get in touch with all my docs next week and decide by next weekend. I doubt I will have any more info if I wait longer. John - I had 16 lymph nodes removed as part of open surgery, all showed no involvement, so the pelvic radiation is a preventative measure. The thought is that some PCa may have escaped into that area. The treatment idea is then to be as aggressive as you can be, given that I am 47 and otherwise healthy and would have 30+ years of life expectancy. Will be praying for guidance and good luck in the treatment.

Just spoke to my Medical Oncologist and he agreed with Radiation Onc's suggestion for two months of ADT prior to radiation, two months during and six months afterwards. He does feel the six months afterwards may be a bit of an overkill. Now I have to wait for the results of my MRI (done two days ago) and get started... A hard part of this was to make up my mind, but the docs say this is the most aggressive treatment plan. With my age, I feel I owe it to myself and my family to hit this with all I can. Those of you ahead of me - what do I have to look forward to? I almost regained the urinary control and slowly was getting over ED. In fact, with the help of a little blue pill, I am now able to achieve a very usable erection. Is this all going to go away with Radiation and ADT? Will it come back?  

Interesting, but I am not sure applicable in my case. These are the studies for radiation as a primary treatment. However, it would be logical that if it helps in primary treatment it would also help in salvage treatment. My Onc mentioned that most of the existing sdudies for salvage radiation do not show benefit of hormonal therapy, however, he still recomends the HT+SRT, because of larger studies for use of this protocol as a primary treatment showed significant benefit. The radiation doc said the latest (small) studies have shown benefit, so either way, I am going for it.

Best wishes Geebra,

You've done your research, now go beat the beast! 

DS

Geebra:

To your question about ED with ADT: I had a Lupron Depot shot as part of a botched initial treatment protocol. This was before my Da Vinci RP (after I found a different urologist). I had no erectile difficulty AT ALL, but absolutely NO INTEREST in sex. My wife would get exasperated and say "Am I going to finally get laid, or what?" Talk about the shoe on the other foot! Once we began I had no problem whatsoever achieving a normal erection and completing the process. Orgasm was normal. This cycle would then repeat.

As the Lupron effect slowly wore off, I suffered a lot of the associated and documented side effects of low testosterone. Hot flashes, memory loss, night sweats, depression. It was miserable. Initially, I didn't seem to be bothered by the Lupron, just when my body tried to re-start the testosterone production. I had a 4 month depot shot in June 2008 and finally got the T replacement in Jan 2009.

After my first PSA came back .01 my GP agreed to Testosterone replacement. Urologist wanted to wait another 6 months. I used the Androderm patch. It took about two weeks and all the symptoms disappeared. I continued for two months, and quit.

Now it's "Will you give up on that? It's not going to happen" from my wife.


These posts show two things: we need to find the cancer earlier, and we need a better detection method or methods. They keep talking about testing for the gene expression of the more aggressive form of the cancer, to identify those pre-disposed to an agressive PCa, but I don't see it happening anywhere.

Squirm's link led to another interesting link on the Forbes site:

http://video.forbes.com/fvn/manufacture-09/robotic-surgery?partner=contextual

 

Post Edited (KeyWestPirate) : 6/12/2009 9:19:03 AM (GMT-6)