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Need Help Cancer return now need radiation with hormones

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Posted 7/12/2018 2:48 PM (GMT 0)
So, I had my prostate removed it will be 2 years ago Dec. 23. My PSA has been 0.0 up to last month it came in at 0.13, my Dr had me redo the test 7 days later came in at 0.14. I had one more test at a different place came in at 0.12. He has sent me to an Oncologist which I did and they recommend radiation with hormones. I'm reluctant to have the hormones as I here it realty messes with your sexual functions. I just now learned to live without a prostate and use Trimix which is great for both me and my wife.
Question is has anyone had the radiation with hormones after there prostate was removed. My Gleason was 6.5.
Also right now I have great bladder control and have lots of sensitivity.

Thank you in advance
Dennis
Posted 7/12/2018 3:19 PM (GMT 0)
Hi Dennis;

Sorry you are in the same boat as a bunch of us. There is a series of threads on the ADT SRT Journey that several of us are on - if you go back 4 pages or so, you will find the third extension of the thread.

Tell us a little more about your diagnosis and treatment - were there positive surgical margins? Extraprostatic extension? Seminal Vessicle involvement? What was your final pathology?

ADT treatments can affect sexual function, but mostly just get rid of any desire for sex - along with a host of other side effects (hot flashes, weight gain, breast tenderness / growth, neuropathy, depression, the list goes on and on). The radiation treatment can reverse progress with incontinence, and can also make ED worse over time - but everyone responds differently.

Best of luck, and let us know how you make out.

Rob
Posted 7/12/2018 3:25 PM (GMT 0)

40buickcoupe said...

Question is has anyone had the radiation with hormones after there prostate was removed. My Gleason was 6.5.

Thank you in advance
Dennis

It's common and the standard of care. Lots of guys go through this. It's the next step in treatment.

It's not fun, and there will be side effects, but it's the best shot you have right now.

Andrew
Posted 7/12/2018 3:37 PM (GMT 0)
Can you tell me after the radiation and hormone shots will I return to somewhat normal having desiere for sex and can perform even if its with help of trimix?
This is my biggest fear
Posted 7/12/2018 3:48 PM (GMT 0)
I did have positive margin, I'm really aggravated at this whole process. I read if your numbers were under 0.2 its not considered returning. I also read if you PSA came back and was under 0.2 you would only need radiation, the dr said I was boarder line of using hormones with radiation. Right now I oped out of the hormones and I'm scheduled for radiation starting first week of Sept.

I wanted to research a bit before I have them pump me full of hormones.
I'm 63 and if I do just the radiation what typically would be my life span?

Then I read that this procedure has a 50% success rate that sucks, if my quality of life drops because I'm taking hormones that's no good either

I want this just to go away, I did this once and ready to just ignore and go on with life and put this in gods hands
Posted 7/12/2018 4:06 PM (GMT 0)
You're asking questions I can only speculate about. Don't let your fears rule your life.

RT won't affect you life span. HT isn't fun and most recover from it just fine. Some have problems. HT won't affect trimix.

In your case adding HT may or may not help. Opting out is likely okay. The RT is likely to work, but there's a chance that as some point you might need to go on HT.

There's also a chance that a meteor will strike you.

Andrew
Posted 7/12/2018 4:08 PM (GMT 0)
Can you tell us more about your post-surgery pathology, particularly the Gleason score at the positive margins? If it was a Gleason 6 that would be very different that a Gleason 7 or higher.

As to the 0.2 PSA number before starting SRT, that's an older standard and data suggests that there's better success when starting at a lower number.

You certainly don't have to do hormone therapy in conjunction with radiation if you're dead set against it. Again, I think your Gleason score would factor into that decision. I'm not sure where you got the number for the 50% success rate--that varies wildly depending on your pathology.

As to your questions about libido, it pretty much completely goes away while you're on hormone therapy, but then begins to return a few months after it ends.
Posted 7/12/2018 4:46 PM (GMT 0)
The Oncologist I talked to said I'm in the gray area of having HT with RT.If that's the case I would not want it but then I have my wife nagging at me to do both for a better chance to get rid of the cancer.
I'm torn here and it sucks, if I don't do the HT and the PSA returns then I guess that would be the next step.
I'm going to get a second opinion before I move forward with RT although I'm set up for first xrays end of Aug
I guess what I would like to here from the next Oncologist that my PSA is low enough to just do the RT and skip the HT. Also I see the HT is a 6 month to 2 year thing that is a wide spread. My Dr said he would start me monthly if that is what IO want to do so this way if I decide I don't want them anymore I wont have a 6 month injection.

Has anyone here had a PSA return that was under 0.2 and just went the next step with RT and not the HT?
I also here the HT your penis and testies start to shrink... don't need that
Posted 7/12/2018 5:16 PM (GMT 0)

40buickcoupe said...
I read if your numbers were under 0.2 its not considered returning. I also read if you PSA came back and was under 0.2 you would only need radiation, the dr said I was boarder line of using hormones with radiation.

Maybe I can straighten this out for you. "Biochemical recurrence" is just a standard term used to convey that the PSA has risen over 0.2. It was set by consensus as that at the end of the 20th century when the best PSA tests could not accurately detect PSAs over 0.1 ng/ml. Most ROs now believe that for men like you, especially with positive margins, treatment at the earliest possible PSA over 0.03 ng/ml is likely to have better outcomes.

/pcnrv.blogspot.com/2016/09/very-early-salvage-radiation-has-up-to.html

You can use this nomogram to see what your odds of successful SRT are:
riskcalc.org/ProstateCancerAfterRadicalProstatectomyNew/

As for adding ADT, please note the quote from Howard Sandler (who would agree with you):
/pcnrv.blogspot.com/2016/08/combining-androgen-deprivation-therapy.html

One thing to confirm with your RO is that you will be getting an adequate amount of radiation to get the job done. To some extent, ADT and radiation dose are substitutable. Here are questions to ask your RO:

/pcnrv.blogspot.com/2017/12/questions-for-adjuvant-or-salvage.html
Posted 7/12/2018 5:18 PM (GMT 0)
There is a recent paper posted here that compared the outcome of 36 months of ADT vs. 18 months, and found that 18 months works as well as 36. 18 months seems to be the standard these days, but there are some guys on here that only get ADT for 6 months.

Testicle shrinkage is one possible side effect, but like the others, is temporary. ADT won't affect the size of your penis.
Posted 7/12/2018 6:39 PM (GMT 0)
Good reading seems the calculator only makes a small change from RT and RT with HT

This is just like Vegas just roll the dice so what happens
Posted 7/12/2018 6:45 PM (GMT 0)
40buick....
I am going through the same thing as you, and sort of struggling with the HT thing as well. So maybe this will help you a bit....

First off, what Tall Allen said.
Second, tha American Urological Association calls Biochemical Recurrence (bcr) at .2. Most or at least many, urologists, still adhere to this. In fact, my Urologist is recommending i do nothing until PSA hits .2 and then do scans. My margins were negative, but questionable.
Third, the latest studies have shown that treating earlier is better. heres a link to the abstract of one of the more recent, larger scale (albeit retrospective) studies, showing earlier is better....

/jamanetwork.com/journals/jamaoncology/article-abstract/2670381

Regarding my situation, like you, i was undetectable (<.02) until the 2 year mark. then at approximately 3 month intervals, my PSA rose as follows: .02, .033, .033, .046, .06, .068.

My uruologist as i said, feels i should do nothing
I have consulted with two top radiation oncologists, at Cleveland Clinic and Memorial Sloan Kettering
The Cleveland Clinic RO recommends i start treatment, however he says he doesnt feel i need Hormone Therapy. His recommendation was based on the study i liinked to above, and the reco regarding no HT was based on my Gleason 7(3+4), NOT my low PSA

The MSKCC RO also recommends i start treatment. Regarding hormone therapy however, he told me the following: "i generally recommend HT to all of my patients. With that said, when a patient tells me that they do not want HT, i respect their wishes. Considering that your PSA is only at .068, i would be comfortable not doing HT. However, if you wait, and the PSA gets close to or above .1, i would feel LESS Comfortable with that, i would advise you to do HT, and again, i would leave it to you to decide"

So its a tough call, 40buick, and in the end, its up to you. My feeling is, i dont know what i am going to do yet, re HT. But i am keeping in mind, as i think you should, that this is my, and your, last chance at a cure. If it works, you move on, but if it doesn't you will still probably not die from this disease, but you will be on and off treatments for most of your life.

So the question becomes, what advantage does adding HT to the Radiation treatments give me. 5%? 20%. I don't know if the medical professionals can give a definitive answer to that question. But its probably worth asking.

Good luck, and please stick around and keep us posted
Posted 7/12/2018 8:08 PM (GMT 0)
Buick,

I'm a bit vague about your post-op pathology. What I think I read is that you were Gleason 6 with positive margins. Is that right?

If so, and bearing in mind that nobody here offers medical advice, least of all me, here's what seems to me to be your situation:

You are in a rather low risk category going into salvage radiation and you ought to be safe enough skipping the hormones. Gleason 6 disease very, very seldom leads to distant metastases which means that the cancer that has returned has probably grown from a bit that was missed in the prostate bed and is still there waiting to be zapped. Since you had positive margins there is a good chance that your doctor knows where that little bit of cancer is located within half an inch or so. It's unlikely that the cancer has gone very far from where it started and your odds of getting enough radiation on it to deal with it are actually really good.

The hormones make more sense for guys in higher risk categories with potentially more-aggressive disease. For those guys the doctors will say "Well, there seems to be something left there but we don't know exactly where it is... so what we'll do is zap your prostate bed and, at the same time, we'll zap everything else between your ribs and your knees, just a little bit, and give you hormones to make the cancer more sensitive to smaller doses of radiation."

One other thing: the longer durations of hormones are usually for the guys in really high risk categories. The talk about 18 months being as good as 36 is for really high risk guys. If your doctor does insist on hormones it's unlikely to be more than six months. Almost everyone gets back quickly to relatively normal after six months of hormones. Half a year is doable -- not fun but not horrible. Yes, your testes will shrink but they will grow back when the HT stops, and if you keep up the timix your penis won't shrink. There will be a few months where you will sort of forget why you thought keeping your member from shrinking was important but you can power through.
Posted 7/12/2018 8:09 PM (GMT 0)
Well your under .1 and I went from 0.0 every 3 months to 0.13 then 0.14 and 0.12 Im getting a second opinion from another DR before I pull the trigger. Right now I might just do the 6 month HT and if I don't like it stop along the way. I may have a different opinion after seeing the DR. My guess is all these Dr's will toss everything at you because there is nothing to loose but may not be needed.

Like you say is this going to kill me before I reach 82?
Posted 7/12/2018 8:13 PM (GMT 0)
Peter thanks for the response, I had a positive margin at one side is what they told me and not at high risk. But now my bladder sits where my prostate was and it sounded like he was going t0o do 39 zaps of the whole bed area.
Does anyone really get ride of this the second go around with RT?
Posted 7/31/2018 11:41 PM (GMT 0)
I don't want to high jack this thread, But if you had RP, How is possible to have a PSA count....
Posted 8/1/2018 12:06 AM (GMT 0)
If you have PSA post RP that means the surgery didn't get all the prostate or all the PC. Some prostate tissue could have been left behind or the PC may have moved out of the prostate bed prior to surgery. It may be in the seminal vesicles, lymph nodes or in rare cases there may be distant mets.

It happens and if there is PSA post surgery, additional treatments are needed.

Andrew
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