When to pass on SRT

Here are some research studies regarding concurrent HT with SRT (called neoadjuvant hormone therapy salvage radiation therapy by some):

http://www.europeanurology.com/article/S1569-9056%2807%2900218-7/fulltext
http://www.redjournal.org/article/S0360-3016%2811%2903455-9/abstract
http://prostatecancerinfolink.net/2011/03/25/6-months-of-neoadjuvant-adt-doubles-survival-when-given-with-radiation-therapy/
http://www.asco.org/ascov2/Meetings/Abstracts?&vmview=abst_detail_view&confid=104&abstractid=72226


Sorry, you may have to copy/paste these links as I don't know how to make them live.

David, you should be able to find some hard numbers among these articles.
Jeff

Post Edited (Im_Patient) : 6/9/2012 10:08:32 PM (GMT-6)

Purg,

Did anyone at MDA suggest that HT was not beneficial with radiation therapy? I'm curious since MDA in Texas is most adamant about HT along with Radiation. However, since this is my husband's primary source of consolidation, I was wondering if that made a difference in their decision?

For obvious reasons, I would love to learn more about HT masking the results of radiation.

Thanks!

PS.. We passed on surgery because we knew SRT was immediately in the cards.

Well, the masking comment is really straightforward.

so what's the difference of knowing now or in six months especially when the addition of HT is a superior treatment?  if you are medium to high risk is it better to know sooner or is is better to go with the superior treatment? 

and does HT really "mask" PSA?

BTW, these are rhetorical questions because i already know what i believe .

ed

 

I guess my point is - if the HT helps, it should be a lot more important to get it to help the RT, even if it takes you longer to find out that it worked. The subject usually doesn't want to perform an experiment, he wants to be cured!
Jeff

Nellie,

Then you aren't reading closely what I write about RT or SRT. Other than my own horrific experiences, twice with RT, I still state that it's a viable treatment method, and that men shouldn't avoiid it because of what happened to me (and trust me, I am not alone). I have no bias against RT, in fact, considering I am a "surgery guy", I often reccomend to new men with Gleason 6 cases, to consider the use of RT seeds. I do, however, feel that what happened with men, is not ultra rare, and men should not go into any type of RT blindly. RT is serious business with its own set of serious risks, these need to be considered and factored into any treatment decision.

David in SC

Jim, welcome to the forum.
I'm an engineer as well, and usually feel the need to get comfortable that I understand the process I am being recommended.

Regarding how radiation works, just one correction: cancer cells are distinguished from ordinary cells by the fact that they are dividing at a faster pace than normal cells. My understanding is that the radiation essentially kills cells that try to divide, after recently being irradiated and put in a state of damage from ionization. Healthy cells are less likely to be in that damaged state when they divide, and thus have a better chance of coming through without being killed. I am sure that this is an over-simplified description of the process, but it satisfied my engineer's curiosity.

I am not going to try to defend HT in concert with RT, as I have no idea how that might work, aside from saying that HT does not "cure" the cancer - it is still present but not in as aggressive a form as long as it is not castrate-resistant yet. It just appears that the research is supporting that HT helps RT. I would probably insist on a better understanding of HT in general before I tried it out in any context.

To defend David a bit - when I was deliberating about choosing SRT, David was advocating it sooner than later in my case, a couple of years ago.
Jeff

Jim, that PSA rise was sure a shock, as you know from having gone through it. Let's hope you get a good drop when your RT finishes (and stays that way after the HT is through).

Too much of it is a crap shoot - the RO still only gave me a 50% likelihood of no recurrence in my lifetime. So after surgery and RT, I still am stuck with the gray cloud over my head for the long haul. Gives you a new perspective - every day is a blessing.
Jeff

Purg-

Thanks for that-- at least I know I'm not crazy, someone else has wondered about the same.

Have a decision to make about that next Lupron shot July 3rd, whether to take it or maybe to delay to early August or September.

Probably splitting hairs and trying to make decisions that can't be made, but I've had to make a living making those type of decisions.

Having read your story, I truly admire your courage.

Are you going to do the ADT?

Jim

Hey David,

As always, I wish you well. It's great to have someone who knows the other side and can provide a counterpoint to the optimism of some radiation oncologists. My earlier comments, which I've deleted from my post, were not called for, and I apologize.

I had to laugh at myself this morning. I'm clearly still processing my newly discovered lymphedema, which resulted from whole-pelvic radiation. While it pales in comparison to what you and others have gone through, it was an unpleasant surprise and somewhat of a damper on my enthusiasm for RT. Of course, it's somewhat uncommon, and given my stats, the RT was still worth it. But for many, it would be another reason to reconsider RT.

Best wishes,
Nellie

Post Edited (Riviere) : 6/12/2012 11:37:52 AM (GMT-6)

Reachout,

You ask a most important question, one that needs to be answered properly.

To be honest, I was suspicious the first time with my RO right after she had developed my radiation plan (as they like to call it). She knew that I would have a suprapubic catheter in place during the entire duration of the radiation. She was in agreement with my Uro, since I had a long track record of difficult stricture issues, and knowing that radiation can cause swelling and create even more strictures. I knew from m own research, and from following the SRT journeys of many others, that the normal standard of care was to have a full bladder before each treatment.

So after she told me the "plan", I asked the right question. "How am I going to have a full bladder with this catheter in place?"
(Obviously, with the catheter, my bladder was constantly being drained as soon as any urine entered it). The RO looked at me, and said "Don't worry, I got that covered." I thought about that a second, and I said, "What do you mean, you got it covered?" She seemed aggervated, and simply answered, "I have taken that into account".

This didn't sit well with me, didnt' sound right. Based on the troubles and side effects I had endured with neck and throat major radiation 8 years prior, it made me nervous and worried. But in the end, I felt I had to trust her judgement, as she was the doctor, she was the expert, and I was the patient. So I entered a trust relationship with her decision.

Now, when the radiation began, the first 3 treatments went by without anything unsual happening. On the particular IMRT machine I was on, it indexed its position 6 times to complete one "zapping" session.

It all began to go wrong on the 4th day of treatment. As soon as the machine hit and delivered the radiation on the 5th positiion, I immediatley began to feel a deep burning deep inside me. From the laying down posiition I was in, it felt like it was coming right inside my bladder. It was an internal pain, but distinctly a burning feeling.

I reported it to the machine techs, and they said, "You cant feel anything, but report it to the doctor next time you see her."

On the 5th treatment (it was Friday now), the same thing happened, but it burned deeper and longer. It was uncomfortable lifting back off the table.

That very next Monday, I told the RO when we had our weekly check up session. I could tell she didn't believe a word of it. But I insisted. I even suggested that perhaps it was because of "scattering". That seemed to annoy her, and she said that with IMRT , there really isn't any "scattering" of radiation.

So to make a long story short, as I went through each and every treatment after that, the burning got worse and worse. It was unbearable at times, and it reached the point, that the techs had to lift me up to a seating posiition, and help me off the table. It would be all I could do to limp back to my car. At its worse, it would take 2-4 hours for the pain to subside that evening. Needless to say, I was really afraid to go back each day, as I knew I would be burned again, but felt like I had to tough it out.

Yes, each week, I would tell the RO, and she would take note. Not until week 7, I believe, after much complaints to my Uro (who thought something terrible was happening), my Uro called the RO, and asked her "What are you doing to my patient? He's complaining about a lot of burning pain from the radiation". It was only then, that she admitted to the Uro, that perhaps there was some scattering going on. But she never stopped the treatments, or dug into why I was being burne.

In hind sight (and I am not responsible for what happened to me), I should have made her stop the treatments after perhaps the 2nd time I got burned. I knew something was wrong. Perhaps having the catheter in place was making some kind of "microwave efffect" - you know, heating up the tube inside me (just guessing), or in the back of mind, knowing that I was getting a strong jolt of radiation (70.2 gys total) on a completely dry bladder.

The doctor should have stopped the treatments to investigate, instead of pushing off my complaints. There shouldn't be any pain during radiation, and if there is, why? I took the pain and discomfort, because I was being complaint in this doctor-patient relationship. Plus, I knew you couldn't abort the radiation mid-stream, and be able to resume it safely later (so I was told).

I still feel radiation is a very good tool in fighting cancer. I am not against it. But all 3 radiation doctors I talked to this time around, really downplayed the dangers and side effect potential. And the RO I had back in 2000, with the neck and throat, never even discussed the danger I was facing while undergoing a large amount of "old school" pre-IMRT radiation. I was clueless of what I was about to undertake.

When this RO told me not to worry about it (the lack of a full bladder), I should have trust my gut feeling and walked away, until she could convince me that I would be safe, that is the biggest mistake I made, but again, I wasn't the doctor here.

David

reachout,

from that perspective, i hope i have educate you a little bit. if you eventually need SRT, make sure you really need it. don't jump on it at the first sign of a rise, this is the mistake my current oncologist says many men make. of course, any radiation clinic is going to push for it, all kidding aside, its a big money maker for them. second, make sure they spend the time to answer all your questions, make them explain in graphic detail if needed, what the risks for you are really all about. most men here, i haven noticed over the years, have asked about short term effects, but few push for the long term risks and potential damages. my case may be rare here at HW, but never forget, all of us together, don't make up but a few grains of salt in a very full salt shaker. both my uro/surgeon and my oncologist (combined, they have 60 years of experience), tell me that severe radiation damage is not that uncommon, and both have told me horror stories that make what happened to me look pale in comparisom.

while i don't push any one particular primary treatment over the over, because there are too many factors involved, and you would have to know a patient's full medical history for starters, i still like the idea in most case, of having surgery first (the risks there are more known), and then, and only then, have radiation as in a salvage situation if needed. once you have been damaged by radiation, there is no fix in the normal sense of the word.

but on a positive note, if you (or anyone else) needs radiation to try for a cure, then i think they should go for it, if their numbers and health dictate it. just realize, there are real risks of potential damage. as you know, i am in the the ultra rare club of Zero ED, despite having a total of 8 PC related operations and 2 months of radiation. My doctors feel its simply the luck of the draw, or at least a miracle. But radiation can effect that long after it ends, so I will not be surprised, if one day I start to "lose it" down there. Right now, I in my 45th month of my PC journey, and still having 100% normal pre-PC sex. For that, I am thankful.

Good luck, as you contemplate your next move, if needed.

David

David and Mel,

My experience was the opposite. Before each session the techs took a CAT scan and made sure my bladder was full and my rectum empty. After one of the first few sessions, the tech told me that I had to have an empty rectum before I came in again. This should be part of any RT treatment regimen that uses machines that combine CAT scan and RT. Something to look for when choosing your radiation oncologist.

Funny thing is, instead of making me have runs, RT gave me slight constipation, so the tech's orders proved a daily hassle.

Nellie