Cancer Free?: Okay, I’m admittedly... - Prostate Cancer A...

Prostate Cancer And Gay Men

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Cancer Free?

billd9946
billd9946

Okay, I’m admittedly beginning to freak out. It’s been three years since surgery and my PSA is on the rise. My surgery was done in July 2015 and a year later I started hormone treatment when my PSA reached .04 around one year after surgery. This was in preparation for radiation therapy, but I decided not to go through with that treatment after consulting with a different oncologist. I recovered my testosterone levels after eight months and since them my PSA has been rising. This month it reached .10 and I’m again considering radiation. I don’t want to ever do hormone therapy again, because it made me feel awful, as in tired and very depressed. Only after one shot my body started to change and I feel it permanently changed me. I’m not sure that life is so good when there is no desire or ability for sex, and when one is so depressed they can’t even function. So, I have a decision to make, sooner than later. I know that even just salvage radiation therapy can be very damaging, while in progress and sometimes not until many years later. Any recommendations are appreciated. BTW, negative margins were achieved, no seminal vesicle involvement, but one out of seven lymph nodes showed microscopic cancer. It’s terrible to have to make the decision to receive radiation over the entire pelvic area with possible damaging of nearby organs, when if cancer is growing, it could very well be anywhere else given the lymph node involvement... and it is too soon for any kind of scan, I think...?

18 Replies

Cancer in any lymph node is a clear indication for salvage radiation of all the pelvic lymph nodes and the prostate bed. Your brief stint of ADT may have delayed progression for a time. When there is cancer in the LNs, outcomes are improved with short term ADT.

billd9946
billd9946 in reply to Tall_Allen

Is that to say my 8month stint with ADT might improve my outcome, or that more ADT with RT, simultaneously, might improve my outcome? I’m told by several doctors that the latter is true... the sooner the better. My current doctor feels waiting until PSA reaches .2 is a better option for me that would likely yield the same result. I don’t know if he means waiting will likely result in the same outcome because I have the same chance for recovery if I wait to meet the .2 threshold, or if he means it’s likely too late already due to lymph node involvement, so I might as well give myself more time to enjoy life before another assault on my body. It’s very emotional and confusing. I can’t stress enough the horrible reaction both physically and psychologically that I had with ADT. I don’t know if I can get through it again. What would you recommend? RT now or wait, ADT in conjunction or not. I feel already doomed, to be honest. I know negative outlook likely yields negative result, but the mind works in mysterious ways.

Tall_Allen
Tall_Allen in reply to billd9946

ADT is used ADJUVANT (along with) salvage radiation.

Once cancer is in the lymph nodes, there is no reason to wait and much reason not to wait. I'd guess that the doctor who told you to wait is a urologist (who doesn't follow patients getting salvage radiation) and not a radiation oncologist. You should only be talking to a radiation oncologist. Patients who wait for PSA to rise over 0.2 had outcomes that were twice as bad as patients who had earlier SRT.

pcnrv.blogspot.com/2016/09/...

billd9946
billd9946 in reply to Tall_Allen

I’ve seen many specialists, including a radiation oncologist who recommended RT with ADT, and I had my first shot that lasted 8 months. My experience with ADT was so bad, I decided to seek another opinion, just to make sure I was doing the right thing. The recommendation to wait was given by a professor of oncology at Hopkins. He has international expertise in the development of chemotherapeutic programs for prostate cancer, and was sponsoring a trial involving PSMA scanning. We talked about the study that indicated a benefit from starting RT with ADT when the PSA reaches .03, which mine had. All things considered, he recommended holding off until PSA reaches .2 to ensure these additional therapies were absolutely necessary. Perhaps his recommendation was taking into consideration how badly I was responding to ADT, but he also felt that maybe I was doing too much, too soon. Might RT produce a good result without ADT? I just don’t know that I can do that shot again...

Tall_Allen
Tall_Allen in reply to billd9946

Really bad idea to wait - did you read the link I provided? As I said, talk to a radiation oncologist not a medical oncologist or urologist.

billd9946
billd9946 in reply to Tall_Allen

I’m in such a fog that I missed the link. I’ve read it now and have a better understanding. Maybe I missed it, but I’m still unsure of success rate for SRT only versus SRT with ADT. I’m afraid of damage caused by SRT (short and long term) and consider ADT to be almost undoable. Thanks for your persistence and patience! Any and all additional comments are welcomed.

Tall_Allen
Tall_Allen in reply to billd9946

If you didn't have lymph node involvement you might have been able to get away with no ADT, but, unfortunately, you do. Read this article:

pcnrv.blogspot.com/2017/12/...

Note that in the Zareba study, treatment with SRT-only (without ADT) was not associated with an increase in survival.

I am so sorry for your new problems. I hope you get some help. Good luck.

Hidden
Hidden in reply to BobJensen

I can really sympathize with your situation. Your post and the replies to it have really upset me.

I have read the links posted here. I'm afraid I didn't look at where the information came from, was it one study or several, has it been repeated, what kind of study was it etc. These things can affect the veracity of the information. I also didn't really note if there were full statistics, that is, I recall the first link says SRT after PSA > 0.2 is 4 times as poor. Firstly, I find this a very negative way of saying it, it might be psychologically better to say 4 times better if under 0.1 than > 0.2.

Secondly 4 times what? There doesn't seem to be any indication of what it's "times" of. If the risk is 4 times something it's more meaningful to know what the something is. If the risk of an outcome is 1%, then 4 times the risk is still only 4%.

Nonetheless, I think it vital to consider this information, but you might like to read further around it.

Another factor is that the figures given are statistical, I.e. relate to groups of people. You are an individual and you have to consider individual factors. E.g. the figures are "corrected" for co-morbidities and Gleason. Your individual Gleason score will affect the 4 times. Simply put, the 4 times will be a mean but for some, it will be less than that. E.g. for low Gleason.

I also note that you are advised here to see a radiation oncologist. Whereas if you've read other posts you'll note that it appears that specialists are biased, a surgeon will recommend surgery, a radiotherapy radiation etc. So the recommendation of a radiation oncologist is going to be biased.

Additionally, I have read posts here that say that there is a tendency to overtreat, or treat too soon.

This might not help, I'm sorry it might make your decision harder by casting doubt on the very clear and direct advice given here.

What's mainly upset me is what I find to be the rather stark and apparently unsympathetic way in which the advice has been given. OK maybe, apart from my doubts, it's good advice, but from point of view, not well put.

I imagine from your point of view too, hearing something you don't want to hear is bad enough anyway.

Still, anyway, you have to do something. I do note that if you do elect for SRT, then you have to consider how likely that is to be of benefit and what the damaging consequences might be. Also if you elect for adjuvant ADT. Presumably this will only be while you have the SRT which means temporary. Can you put up with it on a temporary basis.

My own PSA reappeared at 0.03 after 1 year post up. I have it tested every 6 months. I find this a nightmare. I am now 6.5 years post op my PSA has gone up AND down. It has been 0.07 for the last 18 months. I agreed with my urologist that should it reach 0.15 I should see an oncologist. Early on, my case was discussed with an oncologist, and according to her advice ,(following further tests), no action was needed.

The difference between us is that you had lymph node involvement and you're less years post op than me. So you have to take that into your considerations. Your PSA has risen faster.

I sincerely hope you can find a compromise you can accept.

As for me, for now, I've made my decision to wait for now. If things progress I don't think I'll wait until (and if) my PSA reaches 0.2 I will seek SRT.

I don't want any comments about this. I don't want any further starkly put information or direction which ignores my personal situation or feelings.

I'm upset for you Bill, I'm upset for myself.

billd9946
billd9946 in reply to Hidden

Tim, it would seem that we very much think alike. I have carefully considered my options by talking to many specialists at 3 different facilities. I simply don’t fully understand all the statistics and how they apply to my particular situation, so I’ve taken all advice and tried to apply it reasonably. After reading everything last night I was feeling like I’ve already waited too long, so what’s the use. Your reply has centered me this morning and I appreciate that you took the time to very thoughtfully respond. You put into words exactly my thoughts, but it’s all so numbing that I sometimes can’t even process it. Anyway, you have no idea how helpful your reply has been... or maybe you know exactly. Thank you! I hope we can communicate again.

Hidden
Hidden in reply to billd9946

I'm glad to have been of some help and I hope you can find the best way forward for yourself. As others say, you are not alone.

SpenceNYC
SpenceNYC in reply to Hidden

Tim, I very much appreciate your comment "I don't want any further starkly put information and direction which ignores my personal situation or feelings." I understand what you are talking about when it comes to this blog. I have found a lot of support here, and also a lot of cold information. I am interested in hearing about the emotional issues and sharing mine. Some people are more comfortable providing medical advice, and shying away from the emotional, and that is fine for them... although why someone would accept medical advice from anyone but a doctor who has examined them is beyond me. 1+ years from my surgery my PSA has gone from .01 to .035. I get tested again on Thursday.

Hidden
Hidden in reply to SpenceNYC

Thanks. I can't imagine that anyone really wants just cold information. A little warmth and reassurance does no harm and can potentially motivate us. It's a shame that some guys don't appear capable or see the need. Fortunately, there's enough that do.

I can only imagine the stress you are feeling. You aren't alone. I hope you make a decision that gives you peace and gives you comfort.

Bill, there is an online support group called AnCan. You can go to AnCan.org and see what groups you might like to join in either through the computer or via a phone. I find them very helpful in planning for the next thing......like salvage radiation. They are guys who are facing this disease and some are very knowledgeable. They have been a lifesaver for me.

billd9946
billd9946 in reply to Gary82050

Thank you, Gary.

Hi Bill

I had radiation after prostatectomy and was surprised at how little I felt; I did have temporary bowel irritation and loose bowels with the radiation, but that stopped after the radiation (the technologists were fairly anal about my bladder being full, and rectum empty). Other men I talked to described feeling really tired but I didn't feel that. The radiation oncologists tell you about the risk of another cancer (>10 years down the road), as well as injury to bowel or bladder due to the radiation, but with either conformal (kind-of targeted) radiotherapy, and with good radiation planning, hopefully the radiation causes a lot less issues for you than the hormones (I also had short term - 6 months-hormone therapy and agree that its side effects of decreased sexual desire, depression hot flashes (which I'm still getting), aren't fun; too bad prostate cancer likes testosterone to grow). Has your oncologist talked about PSA-labelled PET to see if it's possible to see where the cancer might be located given that you did have lymph node involvement?

Good luck with your decision.

billd9946
billd9946 in reply to dhl550906

Good to know your radiation experience was mild. I do worry about possible damage, and have read it can catchup years later. The oncologist I currently see was involved in a trial involving PSMA scanning. I contacted him originally to see whether I could participate in the trial, but my PSA was too low. I was told that if PSA is lower than .2, cancer would not be identifiable. So, I assume there is no scan sensitive enough to show any residual cancer at this juncture in time. That would be the best possible scenario if they could target where ever the cancer might be. I'm not sure if the PSMA scan is the same or similar to the PSA-labeled PET scan that you mention. Thank you for your input.

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