I was diagnosed with PCa 13 1/2 years ago, had a robotic RP 13 years ago, 5.2 pre-op PSA, post-op Gleason 4+4, T3a staging, negative margins, no adjuvant therapy, and a slowly rising PSA from 0.03 to 1.1 as of 6/2017. I have been trying to find a super sensitive scan that would locate PCa recurrence with a relatively low PSA (most doctors agree that recurrence occurs at about 0.2). To the best of my knowledge, the 68Ga-PSMA-PET/CT and the F-18-Axumin-PSMA-PET/CT scans are the most sensitive and are 'somewhat' valid with PSAs above 0.7. The Choline-C-11-PET scan requires a minimum PSA level of close to 2.0; consequently, I opted for the gallium scan (lowest price is in Melbourne AU..$600 US as opposed to $2650 at UCLA). I had the scan performed at Peter MacCallum Cancer Centre in May of 2017 and it identified three mild to moderately intense PSMA avid pre sacral nodes. According to two of my three urologists, surgery or radiation didn't appear to be viable options for the following reasons: Surgery would be technically difficult, could result in sequelae and (most importantly) it is likely that other LN's may be involved that are too small to show uptake on the scan. Radiation to the area could be done, but again it has the same concerns as to whether the identified LN's are truly the only ones involved. Two of the urologists suggested ADT as my best option; however, my urologist/oncologist at UCI who did my robotic radical convinced me that another robotic surgery may delay ADT. I had the surgery performed in August and three months later my PSA was at 0.54, 50% of the pre-op surgery level. Eight LN’s were removed; however, the path report indicated “soft tissue” metastasis. The surgery, as was the RP, was a ‘piece of cake'…one night in the hospital, no pain, and two days after the surgery I was on a plane to Phoenix; even carried my luggage (two checked bags and one carry-on). Needless to say, I am thrilled with the results even though I know that LN's which were not identified on the scan exist..
Regarding ADT, my doctor is very conservative and has been delaying administering since he is more concerned about my QOL than giving me an extra couple of years. Most of the ‘modern’ ADT drugs are quite expensive (my Medicare ins. doesn’t cover me when out of the US) and they appear to have many side effects. I am currently applying an estradiol (E2) gel (transdermal hormone therapy) as an alternative to the ADT drugs and my most recent PSA has dropped to 0.046.
My father and his two brothers (all had RPs) survived many years on oral estrogen (DES) and passed away in their late 80s. After researching estrogen therapy, I have found that oral estrogen increases blood clotting and cardio risks; however, transdermal therapy because it is absorbed directly into the bloodstream and bypasses the first-pass liver metabolism has a much lower cardiac risk factor. Richard Wassersug is an authority on this subject and has replied to my posts with some very informative and detailed input. He has also authored two books on “Androgen Deprivation Therapy”.
My thanks to all of you that have replied,
Ron
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E2-Guy
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I am thankful for your posting... I've been looking for this sort of information since I joined this group, and this is particularly helpful.
Here's my story:
Dx is PCA in 2002 - RP, 12/2002... results = no lymph nodes involvement; no seminal vesicle involvement; negative margins, but an extraprostatic extension, so my stage was 3a...Gleason 3 + 4.
For 13 years, my PSA stay at "less than 0.04" - then, a couple of years ago, it began to rise... .08; .10; .12;15; .18 - and, has "bounced" up and down during this time. I was diagnosed at the age of 49, and am now 64 +.
The general opinion here in Boise is while I am no longer in remission, I am in an "indolent stage," and will, ultimately, experience "biochemical failure" (hit the benchmark of .2 for recurrence). My surgeon from Mayo is very strongly of the opinion this is "benign," but no one shares this opinion, including Dr. Catalona, and I have been steeling myself for the next portion of the journey.
I am wary of radiation therapy: as often as not, it seems RO sweep people like me into radiation, confident only the "bed" is involved - only to find months or a short one or two years later there was already micro-metastases. so, radiation seems to be a coin-flip - and, the damage from radiation is frightful, isn't it?
Your story offers some hope -as do so many here - that one might delay and relegate as chronic this dreaded disease. Thank you.
Dear "Spinosa", I am very interested in sharing my journey with you and I would like to talk with you via the phone. Send me your phone number and times that you are available. Thailand is currently 15 hours ahead of Boise and I am a late night person which makes your mornings a good time for me to call. My email address is: ronpitelka@yahoo.com. Regards, Ron
The decision for or against "salvage radiation" seems to be a difficult one. I can't give you a citation but I seem to recall reading that, for men with PSA below 0.4, the odds of success were about 40%. They might have been a little higher for men below 0.2 (e.g. 50%), but I don't remember. When the PSA gets higher than 0.4, the odds of success start declining and at some point (2.0?) become quite low.
0.2 and 0.4 are both too low for the current scanning methods to reveal anything, so radiation is a crap shoot. The odds are against winning, but not dramatically so and the benefits of winning can be very great - cancer cured with no more treatment for the rest of your life.
I think, but I'm not sure, that I might do the following in your shoes. First, find a top radiation oncologist, someone who knows what he's doing and is committed to doing the best for his patients. I always look first at teaching and research hospitals, but there are also some outstanding private doctors like Dattoli in Florida.
Consult with the rad onc. Ask what he recommends and why. If he recommends salvage radiation what would he radiate, what would he not radiate, would he use adjuvant ADT, what side effects should you expect, and what are the chances of complete success or partial success.
If I believed what the doctor told me, I'd then go off by myself for a few hours, think it out as best I can, take a deep breath, and announce my choice.
Another idea is to try "light" ADT, perhaps Avodart and nothing else. Maybe it will slow things down enough that you'd be treatment free for many years. Or maybe not. If consulting with a radiation oncologist, I'd ask him if Avodart or some other drug would hold down the cancer and preserve the option of getting radiation later. Or alternatively, would the odds of success for radiation decline if you don't get it soon.
It's a hard choice. The one good thing is that, whatever choice you make, the odds are good that you're going to survive into old age, though you may need ADT at some point in order to do it.
Alan, About seven years ago when my PSA had reached 0.5, I consulted the opinion of a radiation oncologist who suggested seven weeks of radiation to the 'prostate bed'. He felt that the recurrence was most likely local metastasis that was confined to that area. My surgical urologist/oncologist and two other urologists suggested that I wait before rushing into radiation therapy. I am happy that I waited since in May of 2017 when my PSA had risen to 1.1 and I had the 68Ga-PSMA-11-PET/CT scan performed it indicated no lesions in the prostate bed area.
In reference to your post above, do you think that there is a chance that Avodart may slow my disease progression down a bit? My post-op lymph node surgery PSA is currently at 0.57. Thank you for all the great information that you have posted.
I don't know if it would slow down progression or not. I've mainly seen it used with a drug like Lupron, or after stopping Lupron and using intermittent ADT. However, while I don't know if it would work or not, I also don't know that it would do any harm. There is a statement used by the drug company: "Using Avodart may increase your risk of developing prostate cancer" (see: drugs.com/avodart.html). But I don't know what that means for a man like you who already has prostate cancer. It does seem to me that you'd want to see a serious medical oncologist specializing in PCa to get an opinion. My inexpert speculation is that, yes, it could very well slow things down and do so with less side effects than Lupron - which would slow things down a lot more.
I think the best thing to do is to find the best med onc you can and develop a plan. Personally, I think I'd like a plan that says not only whether you should try Avodart, but also when you'll stop it or add other drugs. I'd also want to know what all the alternatives are from ADT + chem down to watchful waiting and get a sense of the pros and cons of each before making a choice. Maybe there's a good book that offers all the relevant info, but it seems that we learn so much new stuff every year that it would have to be a very recent edition.
Thank you so much for taking the time to answer my (and everyone else's) questions in such great detail. As I have previously mentioned, my urologist/oncologist at UCI has kept me off of ADT this long since he is concerned about my QOL. Since I am in the 'autumn of my life' and still feeling fine, the decision to start ADT/chemo is very difficult...especially after reading the posts of so many of our comrades on this forum. Your thinking regarding, "Using Avodart may increase your risk of developing prostate cancer" is essentially the same as mine. Citing recent research, e.g., Dr. Abraham Morgentaler's hypothesis on T keeping the prostate healthy, and my own observations of family, friends, and other men that have/had PCa, I am convinced that men with higher T levels are in a lower risk category. It appears that the problem lies with T not being able to discriminate between healthy and malignant cells; therefore, if a man does develop PCa', the androgen continues to feed the cancer.
Richard Wassersug (authored a book on ADT) has experienced great success using transdermal Estrogel. This estradiol supplement and Avodart (not initially in combination) as alternatives to the conventional ADT drugs are in my very near future. I am going to get one more PSA before I start and will keep you apprised.
Can't thank you enough for your concern and advice...best wishes,
Hello again, thanks....but I am old school.....am trying to keep our local "bricks and mortar" independently-owned bookstore in business......but if the book is "in print" they can get things for me rather quickly....told my husband about it.....
I understand! Too bad more people don't feel the way that you do regarding "independently-owned" stores. Perhaps many more jobs would have stayed in our own homelands. I can still recall all of the 'Ma & Pa' businesses that were boarded up in small towns (because of a Walmart that opened) when I drove back to Chicago from my college in Texas.
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