Making a decision! : 3/30 Entry Hi All... - Prostate Cancer N...

Prostate Cancer Network

3,021 members1,715 posts

Making a decision!

trregan
trregan

3/30 Entry

Hi All,

I would appreciate any comments or feedback about ADT and its affects, long term or short. Sounds kind of bleak.

Thank you for your help. T

3/27 Entry

My second opinion surgeon at Kaiser SF recommended RO to me, rather than surgery. He was a little glib, noting that follow up hormone treatment would provide me with the experiance of being a menopausal woman, complete with hot flashes! WTH. These guys have been at it a long time and likely are bored talking about outcomes and options. That was my impression.

My RO -Dr. Mo at Kaiser has been diligent in answering my questions. He has a lot of certainty in his process. He recommends 5 SBRT treatments with some hormone follow up {Lupron} for 30 days and then monitoring, noting that he does not use Space OAR, the gold posts remain and I should not feel any pain, etc.

My clinical stage is cT1c, GS 4+3 and 3+3, psa 13.8, volume 41...no cancer noticed in lymph or bone. I am 72, and ED is my libido is significantly diminished [but I still love porn]

My situation seems simple compared to many of the men who post here [thank you for your help and wisdom]..and the literature, reports and feedback is awesome. Now, I simply want to make a decision or not.

SBRT seems way less annoying than Surgery. Better long term outcomes.

What do you think?

Here is part 2:

1. A prostate multiparametric MRI using Endorectal coil or Pelvic array coil

2. Start Casodex tablets (50 mg once a day x 28 days) and take injection Eligard (45 mg) AFTER prostate MRI and completing laboratory blood tests.

Thanks to all who have commented thus far....especially with the Kaiser folk.

27 Replies

It's what I did 10 years ago (without ADT - I'm not sure why your doctor thinks there is a benefit to adding ADT)

doc1947g
doc1947g in reply to Tall_Allen

G(4+3=7)Grade3

AlanMeyer
AlanMeyerModerator

Hello trregan,

I chose radiation (HDR brachytherapy + 5 weeks of external beam + a second HDR) back in 2003-4 with four months of ADT and, so far, have not needed any further treatment for my Gleason 4+3 cancer.I went to see a urologist/surgeon and two radiation oncologists. I chose one of the ROs in large part because I thought she was more knowledgeable, more experienced, and more committed to her patients, than the urologist. If she had been offering surgery and the urologist had been offering radiation, I think I might have chosen surgery.

One problem we face in making these decisions is that both doctors and patients are often committed to their particular treatment. A surgeon understands surgery better than radiation and vice versa for the RO. Each tends to believe in what he or she does. Patients are similar. They chose one path over the other and committed to it. For most of us, the idea that we made a poor choice, one that can never be reversed, can be psychologically intolerable. So many patients recommend the same treatment that they had, even when the results were questionable.

A similar problem occurs with side effects. I've seen many patients talk about how they had no side effects from their treatment. If you ask them specific questions like: Did you have any incontinence? Did you have trouble urinating? Were you impotent? Did you have hot flushes? Was there any pain? Some of them might answer with something like "Oh sure, I had some of that, but it wasn't bad." They're not really lying when they say they had no side effects, they're saying that, as far as they were concerned, they made a smart choice. Their lives were saved, and the side effects were insignificant by comparison.

I don't know what your Kaiser plan allows you to do. I'm sure they'll allow you to get a second opinion from a surgeon if you haven't already had one. I don't know if they'll allow you to see another radiation oncologist. I'm also a Kaiser member and have had treatment from excellent doctors and occasionally from other doctors that I thought were below average. If you have any doubts about the RO from Kaiser, see if you have the option to get second opinions from another RO. If you do have options, do careful research. I don't think Kaiser or Medicare will pay for you to go on a shopping trip, to interview all of the ROs around town.

All in all, it seems to me that you've done a good job of thinking through your options and your choices are at least as reasonable as any. The only question that came to my mind, apart from whether you consider your RO to be the right choice, is whether 30 days of Lupron are enough.

Lupron stimulates the output of a hormone that, in turn, stimulates the production of testosterone. Eventually, the testicles become overstimulated and shut down. The process typically takes 1-2 weeks. During that time the testosterone levels will be higher normal and something like bicalutamide (Casodex) is used to keep that "testosterone flare" from stimulating your cancer. 30 days of treatment is thus really more like 16 days. It is true that the effects of Lupron on cancer are strongest at the beginning and then taper off into diminishing returns. 30 days is better than nothing and 60 days is probably less than twice as effective as 30. Nevertheless, the effects of radiation are not immediate. It takes months for many of the tumor cells to die off after the radiation. It seems to me desirable to have the low T operating against those cells for the entire period.

Ask Dr. Mo about this. Has he cut the period down to 30 days because you pressured him in order to reduce side effects? Would 60, 90, 120, or 180 be better? Those numbers can be a pain in the butt, but they're not as bad as 2-3 years and they may produce better outcomes than 30 days. I had 120 days, a 30 day injection followed by a 90 day injection. I didn't like Lupron at all but the doc discontinued it after 120 days because my liver enzyme levels were looking bad. The dosage was started about 6-8 weeks (I don't remember which) before radiation began and the effects took about 5 months to begin wearing off.

Best of luck.

Alan

trregan
trregan in reply to AlanMeyer

Thank you for this insightful comment. You gave me some good ideas that need clarification from the RO. I so appreciate your time. Gratitude.

curtisbirch
curtisbirch in reply to trregan

I would also concur with Tall Allen about seriously exploring monotherapy. I had Dr King at UCLA recommending my SBRT with hormone. I am a Kaiser member. I paid for out of network 2nd opinions and considering all that’s at stake, I’m very glad I did . I ended up staying within Kaiser and choosing HDR brachy monotherapy. I’m really glad I did the extra research. Especially after I had surgeons at Kaiser getting very pushy. As Kaiser patients, we are very fortunate to have Dr Wang for HDR brachy at Kaiser Santa Clara who was a student of award-winning HDR brachy pioneer, Dr Dimanes out of UCLA. Dimanes was adamant about the effectiveness of mono-therapy when it comes to HDR RT (has written papers on it). Also, within the Kaiser network Dr Goy out of LA Kaiser is an advocate of monotherapy but has a specialty in LDR seeds. I got another opinion from Dr Goy on my case and although the didn’t end up doing treatment, he ultimately consulted with Dr Wang through the process. So when I initially thought it was a limitation to stay within Kaiser, the more I explored every option the better I ended up being. In the end, I can’t believe the quality and level of care I received. Where are you located in the country? I’d be happy to give you more information.

trregan
trregan in reply to curtisbirch

Thank you Curtis...San Francisco.

Hey curtisbirch - I am in LA and have also consulted with Dr. Goy and read his paper on mono therapy. It's very interesting and I am considering going that route. If you don't mind sharing I was just wondering what your GS or/+ stage was? I have 4 cores @ 4+3 and am stage 3.

Good to hear from you . My case was complicated to get a clear cut idea on the best treatment because I had a very large volume of 3+4. So most doctors considered me high risk intermediate while Dr. Dimanes was adamant I was squarely medium risk. He didn't seem to care that my MRI was troublesome. It was all very stressful as there was no obvious way to go -- why I got so many opinions. In the end, being close to 50 years old I had to let quality of life and SE factor into the equation. I'm happy to give you more details via DM.

trregan
trregan in reply to curtisbirch

Thanks...would you be able to tell me which Dr. Wang?

curtisbirch
curtisbirch in reply to trregan

Apologies for the typo in his last name--it's Dr. Michael Wong: health.usnews.com/doctors/m...

Here's the line to his direct department at Kaiser Santa Clara:

408-851-1000

I can't recommend anyone more highly. He learned from the best, Dr. Dimanes, and has a tremendous amount of experience. He is performing hundreds of these procedures a year and is a true pleasure to work with. When you speak to him let him know that Richard sent you and definitely tell us how it goes!

trregan
trregan in reply to curtisbirch

Gratitude!

Surgery might give you the only chance for totally getting all cancer cells. Use RO as a second line defense.

maley2711
maley2711 in reply to Magnus1964

I don't think there is any consensus on the superiority of surgery...or have I missed something? If so, the NCCN needs to revise their guidelines? Now, I'm open to the argument that best results with radiation require ADT, while surgery does not...but I'm not sure that argument correctly states the facts for a 4+3 person undergong SBRT...is ADT necessary?Allen may have a study re that question. oryou could jump to Google......the kaiser RO evidently believes there is sufficient evidence to advise pre-treatment ADT. I'd ask what evidence he is relying on?

Aside from cancer, what is your overall level of health? At 57 and in good health when diagnosed, surgery was a pretty easy decision for me and 18 months past that point have no regrets going the route I went.

trregan
trregan in reply to CHPA

I am in reasonably good health. I'm 72, have some hypertension...generally perky and energetic.

CHPA
CHPA in reply to trregan

Good. So surgery is an option as with the course you mention. Health all of a sudden matters when the body is being assaulted be it by a surgeon or an RO.

I chose SBRT without the ADT 2 years ago for favorable intermediate PC 3+4. Did all the research I could and am not looking back. No ED, no urinary issues, PSA dropping well. Used the spaceOAR and still had some bowel issues for a couple months. Nothing lingering.

I did SBRT with spaceor at UCLA. No side effects whatsoever. A little hot feeling down there for a few weeks. Took Flowmax for a while. Drove myself home 1 thousand miles after procedure. Nobody said anything about doing any miserable ADT. Definitely would do it this way again. I took four years on active survellence before deciding. Gleason 3+4. Good luck.

It is a personal decision. At age 68, however, with similar disease metrics, I did not even consider surgery. I had IMRT radiation treatment coupled with 6 months ADT hormone treatment ( Firmagon ). Best wishes with whatever you choose, judg69.

trregan
trregan in reply to judg69

Thanks...if I can ask, how did the hormone treatments affect you? How are you now erection wise...etc. {if thats not too personal}

I'm a Kaiser NorCal patient, glad to see others here are as well. Had RALP back in December for G(4+3). Not interested in debating pros/cons of one approach over another. If I can help with more info on the RALP contact me privately. Kaiser has good physicians, never even considered anyone out of network or other approaches from what they offer.

I did SBRT in Sept 2020 at UCSF, no Space OAR or ADT either. I was 55 3+4 high volume.

johndlau
johndlau in reply to ODave

Hi ODave, I have an appointment with UCSF to discuss HDR-BT. Would you mind sharing your experience there? Scheduling the appointment has been difficult.

ODave
ODave in reply to johndlau

Hey Johndlau overall the experience was good. It was a little hard to set appointments etc. in the beginning especially when I went in the middle of Covid. They are hard to get ahold of, once I sent all my records it took awhile but they finally got back to me. Best thing you can do is get set up in there system and use MyChart to communicate they are much quicker that way.

johndlau
johndlau in reply to ODave

Thanks ODave, glad to hear it gets better after the appointment is set, was worried the whole procedure and follow up was going to be as bad. Take care!

ODave
ODave in reply to johndlau

You bet anytime :)

I am five months into six months of ADT with lupron. Other than the sex thing, or lack thereof, it’s been ok. Endurance for exercise is lower and afternoon naps call me but I haven’t had any of the other side affects ( my wife tells me I am no more moody than normal 😃)

You may also like...