HealingWell
Search Close Search
☰

Dr recommend radiation and HT treatment post RP, undecided???

Support Forums
>
Prostate Cancer
✚ New Topic ✚ Reply
12
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 4/21/2017 7:15 AM (GMT 0)
I had a consultation with RO today and because of my hi Gleason score 9(4+5) she wants to put me HT for 3 years and radiation beam therapy.
I'm seriously considering doing nothing. I had a tough recovery from surgery (30 days in hospital). Now I'm recovering very quickly with little to no incontinence and mr happy is coming back!
I'm sure that treatment plan will extend my life but my quality of life would make me miserable. Permanent ED? Incontinence? Tired and overweight. Right now my PSA is undetectable. If I do nothing the odds of PC coming back are against me but the Doctors can't tell me 100% for sure that it will come back and if it does how long I have.
I'm sure there have been many PC patients at the same crossroads.
How did you decide?
Posted 4/21/2017 7:25 AM (GMT 0)
My impression is that many urologists and oncologists would make that recommendation, but only you can decide how you want to balance quality of life against chance of recurrence. You can put your numbers into this website to get an estimate of the probability that your cancer will recur:
https://www.mskcc.org/nomograms/prostate/post-op
Other people here can help you make an estimate of the probability of serious side effects should you have the radiation therapy. You are facing a difficult decision. You don't need to rush into a decision. Take you time to gather information and to think. Good luck!
Posted 4/21/2017 9:40 AM (GMT 0)
Very useful site. I'm going to seek some second opinions and research as much as I can. Thank you
Posted 4/21/2017 11:04 AM (GMT 0)
Vmost66-

You're undetectable right now, so you may want to wait until your PSA starts rising, if it ever does, before considering additional therapy.

Your Urologist may feel earlier treatment, especially with lymphovascular invasion, would be beneficial.

Bobby Mac
Posted 4/21/2017 11:32 AM (GMT 0)
I wished I could tell you what to do. But, I can only tell you about my decision for myself. My stats were not quite as serious as yours after surgery. I researched salvage treatment vs. adjuvant 6 years ago and with my numbers,the odds of a cure were not much greater either way. So I chose quality of life and to avoid the side effects of treatment that possibly could have been without cause. For almost 3 years (35 months), I was undetectable and celebrated not doing adjuvant. Then even as my PSA started creeping up I am still continuing to delay treatment with it's side effects for as long as possible. But my life situation may not be the same as yours. There is a lot of considerations about your individual life that you have to think about. Right now, some would say I am living dangerously. Well, maybe for there place in life now, but right now I am relatively healthy, feel good and wouldn't know there was a problem. Hopefully, some new treatments with better success and/or less side effects will be available when I have to start fighting again. The way I deal with thinking about this is, there are some men on here that were diagnosised a lot worse than myself and thankfully, are doing fine with their treatments. Only I will know when the right time to get back in the fight is. Even with your stats, you have time to research and find your choice.
Posted 4/21/2017 12:02 PM (GMT 0)
Either decision you makes comes with negatives and positives. While no one can tell you what to do they can share their experiences.

My Gleason score at 8 was better than yours, and they did remove a lymph node that was 100% cancer. It is a rare form (Ductal) that is agressive and can not always be followed by PSA. For me I went with hormonal therapy (started two months after surgery) and 38 rounds of radiation starting four months after surgery. I am happy with my choice, but the side effects from Lupron can be hard. That said, I can still do the things I love, scuba, biking, hiking, etc., just a lot slower.

Good luck!
Posted 4/21/2017 12:45 PM (GMT 0)
If you decide to do nothing, you are essentially playing poker and hoping for four aces. If the objective is fighting the beast and staying around for the long term for your benefit and those around you, you should seek more treatment.

Dealing with the side effects of Lupron wasn't fun (hopefully no need to repeat) and salvage radiation made me tired but after a year, I'm back to my old self (except for about 10-15 pounds I need to lose.)
Posted 4/21/2017 1:18 PM (GMT 0)
It looks that you didn't have extended pelvic LN dissection so you don'y know if it has spread to the lymph nodes? but anyway, spread to seminal vesicles and negative margins could talk against adjuvant radiation. A wait and see approach could be be to use androgen deprivation therapy only upon clinical recurrence.
Posted 4/21/2017 1:48 PM (GMT 0)
Gemlin -"It looks that you didn't have extended pelvic LN dissection so you don'y know if it has spread to the lymph nodes? but anyway, spread to seminal vesicles and negative margins could talk against adjuvant radiation. A wait and see approach could be be to use androgen deprivation therapy only upon clinical recurrence."

Vmost66
Sorry Gemlin I believe I deleted your original post by accident...to answer your question, my Radiation Oncologist went over my pathology report with me yesterday and said the cancer had not spread to the lymph nodes yet (left and right pelvic lymph nodes tested).
Yesterday was the first time I had gone over my pathology report with a doctor. I only received a copy of the report on my way out of my urologists office last week. He is going to get an ear full upon our next visit for not going over it with me while I was in the hospital!
Posted 4/21/2017 2:31 PM (GMT 0)
I was only diagnosed 6 months ago and really didn't want to do anything but monitor. However, after my PSA doubled after Biopsy and the 5 doctors I consoled with (along with my own research) I moved to the action phase. A big step in a relatively short amount of time. My biggest fear was ED and incontinence to some extent.

Post prostatectomy I have some ED but it's getting better. And after using a catheter for seven weeks I'm very happy that I don't even have to use pads now. Radiation and Lupron treatment is just to much for me now.
Posted 4/21/2017 2:48 PM (GMT 0)
7 weeks with a catheter! Your first post mentioned a tough 30 days after surgery. Sure sounds like it.

I can understand your feelings. A difficult post-op phase can wear down the best of people. But you should review your pathology with a few experts. Get another opinion or two before making any decision. I'm no doctor, but find one you trust and consider his advice carefully. Your long term prospects might depend on it.

Maybe you should give yourself a little "holiday" from all this prior to getting into the details of future treatments.

Good luck.
Posted 4/21/2017 3:01 PM (GMT 0)
You should ask for an ultra-sensitive PSA test. Might give you a better idea if you need further treatment. if you're below, say .01, you might be fine with waiting for awhile. In any case I wouldn't start a new treatment until you've had time to fully heal from surgery.

Andrew
Posted 4/21/2017 3:20 PM (GMT 0)
Hi, I can’t offer you any advice but can share with you my experience.

I started out with a better pathology then you after surgery, and though I was “cured”. However, as my profile shows, that was not the case.

When I was told about having to start on two years hormone treatment and having to take prostate bed radiotherapy, I got really scared reading about all kind of side effects.

I have now been on HT for about 8 months, and finished the radiotherapy two months ago. I know that every case is different, but in my case so fare almost no side effect at all. The one major exception is that the honest warning about ED from the combination of surgery, HT and radiotherapy have turned out to be true. I went into this accepting that this was the price to pay going for a potential “cure”.

I made some changes in my diet and started going to the gym regularly (treadmill/swimming), and think this has played an important role fighting fatigue and weight gain (have actually lost 5% bodyweight).

As most of us guys on this forum I search for as most information as possible on internet, and it looks like “the sooner the better” is a common theme in published research findings. These findings versus the risk for over-treatment and quality of life effects is a personal decision.

Whatever you choose, I wish you all the best.
Posted 4/21/2017 3:31 PM (GMT 0)
At 50 y/o with the post op pathology you have...I got to go with the odds that you will eventually have a recurrence...having said that...I emphatically disagree with the "throw the kitchen sink" at it and the sooner the better...nope...not I gunga din... StartTechs is an interesting case...he is about your age...he has managed to stave off the S/E for a nicely time...
Is this at the expense of an early and painful death...Again not I...Pca is such a personalized dis ease...so no ez answer...I would hook up with a good urological oncologist for your care...you probably will in some form or another be involve in this for the rest of your life...that is not a bad thing nescassarily...
I would not do nothing...I would get myself in top physical shape...eat well..."live well...laugh often...love much" have your new team watch the psa...mutually decide on the trigger point for HT{ no rad...its probably out of the barn}...Iam ignant on sbrt focal treatment for lymph nodes like that...but am skeptical...I think when systemic...which I think yours is...that it is beyond "cure"...not negative thinking...realistic but mind is not closed on it...You can live a long time with this disease...even without any treatment...throw in some treatment at the "right time" you can problaby out live it/or give the devil its pound of flesh at a ripe old age...I haven't had a psa test in over 18 mos...do not intend to have one till symptoms arise ...if they ever do...Do I think i still have cancer?...maybe...maybe not...but either way it will not rule my life...I allready have that slot filled thank you very much... I'm creating my life well into the 90's...if Im wrong...no worries...it won't kill me... Major caveat here...I am 74...I know a lot about my cancer...placement of main tumor...post op pathology...fitness beyond fitness...freak of nature if I may...my place and raison de etre in the universe...all that good stuff...this has all led me to to my personal decision... to a very personal bodily wound...you will not get your answer from me...but I hope...it helps you in your search for your own personal...drink of " water...cool...cool water"........regards...good luck...that never hurt any one either...
Posted 4/21/2017 4:17 PM (GMT 0)
In your shoes, I would seek out people who had been most able to weather HT and SRT/ART well, learn how they handled it. There are many of them here. I'd listen carefully, learn all I could, then decide. There's every chance I'd choose the same path you are contemplating.

Good luck to you. The standard of care is not for everyone, perhaps more measured narrowly against years of survival than QOL.

Wilderness
Posted 4/21/2017 5:03 PM (GMT 0)
I'm sorry to hear about your extended post op stay in the hospital, but as a fellow T3B'er with SVI I can pretty much guarantee that there is still some cancer left behind in your prostate bed, and that there will likely be radiation therapy in your future. Overall survival stats for T3's are typically based on how soon after RP you begin RT. Zero (immediately) to six months is considered "very near term" and 6 to 21 months is near term. After 21 months the stats change.

There are websites which others can direct you to (my Lupron brain can't recall exact URL's) which calculate your chance of ten year survival based on Gleason and staging... yours are high. But you can certainly take some time off without jeopardizing your lifespan. Get your PSA tested routinely... mine is tested with uPSA every five weeks. Your RO or surgeon can put you on HT to keep your PSA down until you are ready for RT. But HT is only effective for a few years before the cancer becomes "castration resistant".

Even if your PSA remains low for a period of years, there are guys who have a recurrence after five years of "undetectable" PSA's... and some not even T3's or G8/9's. Assuming negative LNI, the next stage after seminal vesicle invasion is bone metastasis, and you don't want that. Please check out this webpage: http://www.cancer.net/cancer-types/prostate-cancer/stages-and-grades ... scroll all the way to the bottom to "NCCN", and determine whether you fall into the "high risk" or "very high risk" category. Then you can decide on your need for RT.
Posted 4/21/2017 5:14 PM (GMT 0)
It doesn't sound as if my recovery was as bad as yours, but it was certainly on the narrower end of the bell curve. DVT set in with a stricture. The fact that you've had to wear that cath as long as you did, tells me the urethra might have not healed correctly. That's what led, in my opinion, to my stricture. Bigger wound...bigger scar. (Island time's logic, I never asked a doctor).

Regardless of what you decide....find out if you have a stricture or not before doing any kind of radiation. You can have one and not necessarily know it. The possibility of having to deal with that problem the rest of my life terrified me. More than the cancer. and from what I've read....scar tissue (strictures) can certainly balk at radiation.




I'd wait. see what that psa is does. Ask the docs about the what if's. I'd assume I'm not cured and it is systemic. I believe that's how I'd roll. (file that under "useless information")

My brother in law had your path after RP with a G9 node. 2 years ago. They threw it all at him and he's pulling zero's. Can't argue with that either. His psa was 20. (but his surgery was text book)
Posted 4/21/2017 5:37 PM (GMT 0)
You can seek more information with scanning of the lymph nodes. Combidex in Holland has a 92% accuracy in finding infected nodes and the newer scans in the US also have high accuracy. With this info you can make a better decision without guessing.
Posted 4/21/2017 5:47 PM (GMT 0)
I very much agree with Andrew that you should be using ultrasensitive PSA testing. With your pathology, anything above 0.03 should be a call to action. Now, what action is up to you - there are 3 choices:

(1) Immediate salvage radiation with long-term adjuvant hormone therapy

(2) Immediate hormone therapy

(3) No salvage treatment

With option 1, you have a pretty good chance of curing it (you can use the nomogram below to see your odds of curing it):

/pcnrv.blogspot.com/2016/08/probability-of-remaining-recurrence.html

There is a risk of reversing some of the continence and potency gains you've made, and adding some new treatment symptoms.

With option 2, you can give your body more time to heal before starting salvage RT (hormone therapy normally starts 2 months before SRT). Of course, your libido would be gone during that time.

With option 3, you would have symptom-free living for about 10 years. After that, metastases will be big enough to be detectable and may start to be painful and cause crippling bone fractures. At that point, you would want permanent hormone therapy, spot radiation, and chemo as palliative measures. Death will follow in about another 5 years.

None of your options are good, I'm afraid.
Posted 4/21/2017 6:03 PM (GMT 0)
I was in the hospital for so long because I had fluid leakage around my bladder area area filling the cavity where my prostate was My intestines also stopped moving and swelled up (extremely painful). They also had to put in extra drains for fluid pockets in my abdominal area. So I was getting fed and hydrated through iv's.
They also placed a tube through my nose to my stomach empty.
Pumped full of pain meds and antibiotics.
Sooooo much better now!
Posted 4/21/2017 6:36 PM (GMT 0)

Vmost66 said...
I was in the hospital for so long because I had fluid leakage around my bladder area area filling the cavity where my prostate was My intestines also stopped moving and swelled up (extremely painful). They also had to put in extra drains for fluid pockets in my abdominal area. So I was getting fed and hydrated through iv's.
They also placed a tube through my nose to my stomach empty.
Pumped full of pain meds and antibiotics.
Sooooo much better now!

going from that to continence and erection(ity) is like having your life back.

Something to remember as well...if you go for it, is that what you are going through isn't near as big a swath of time as it seems to be when you're where you are. It's a stop at the station but you're staying on the train at your age, no matter what. Doesn't feel like it now...but....

Just some perspective....you want to end up where you want to be...and aim for that, whatever that might be.
Posted 4/21/2017 6:47 PM (GMT 0)
Mr. Tall Allen: In your reply to Vmost66, I had a few questions if u don't mind. In option 1 you state" 1) Immediate salvage radiation with long-term salvage therapy". For terminology purposes, isn't all SRT for the long term? You also state the he has a pretty good chance of curing it. Later in your text, u say that none of his options are good. With all that said, why is option 1 not good? Thank u for your time.
Posted 4/21/2017 7:35 PM (GMT 0)
Michiganman-

You are absolutely correct - my mistake. I meant to write "long-term adjuvant hormone therapy." I've corrected it now -- thanks!

Option1 isn't good for the reason the OP worries about -- side effects from salvage radiation may diminish his quality of life.
Posted 4/21/2017 10:58 PM (GMT 0)
Mr Tall Allen / Michiganman:
Thanks for the clarification, the nomogram gives me a 44% chance of success with ADT and 22% without. I'm weighing that against the side effects diminishing my quality of life.
I'm still in the research phase but to be safe I might try a 1- 3 month Lupron shot to see how I feel.
Lots to learn!
A genuine thanks to all for sharing!
Posted 4/22/2017 12:54 AM (GMT 0)
There is so much mixing of studies old and new in these replies... truths and fictions...it makes the devil dance with delight...taking an already complex issue and making it even more confusing for a newbie or even one with knowledge cringe..its shameful...If you don't know...move the walnut shells so fast no one will see the tell{btw this is not intentional...never is...but very real} ...no coincidence...weak leadership at the top{in these times} always follows..never leads...look around in this very interesting 100 year anniversary of the previous century...Dickens was not just referring to his time{don't confuse the pairing of the previous claims...they connect}...but all times such as these..."it was the best of times...it was the worst of times"...fasten your seat belts...some major CAT ahead i.e. "Clear" Air Turbulence ahead...the worst kind...cause...well cause you don't see it till your in it...ask any pilot with any kine...da kine... if no can know dis kine stuff...use da kine on da inside of da worried wrinkle brow and tink a bit....it's smoothing....fwiw tee hee...puh-leaze...no obvious rejoinders...be of seminal thought and pinch yourself...
✚ New Topic ✚ Reply
12