Why wouldn't most have surgery??

Leo, I'm late to this thread, I see you've gotten some great responses.

In the end, it comes down to our individual choices. I chose surgery, and I'm happy with my results. As I look back at the considerations, some that don't get a lot of comment usually include things like....

How far are you from the treatment location? This can be a factor, if the choice is one or two trips there for the consults and the actual surgery vs multiple (5 minimum for SBRT up to 40 or more for EBRT) visits for radiation. I lived a 2 hr drive from the nearest quality treatment facility, and that was a factor.

Do you have a need to KNOW your true pathology? Surgery is the only way to be certain.

Can you handle the gradual decline in PSA after treatment? Surgery (the vast majority of the time) gives an immediate PSA drop to zero. Radiation can take months or longer to decline to it's low point...and it's rarely non-detectable.

What about side effects? This gets a lot of comment, but I'm less than enthusiastic about many of the numbers thrown around. Surgery can have withering side effects (up to total incontinence and total ED), but the true numbers are not easily found. Radiation generally has fewer front end side effects--unless you wind up with massive problems...and then they are bad.

In the end, it's an individual decision, and there is only one right answer for you...the one you come to knowing as much as you can.

ARangel14 said...
I've debated since last night to even participate in this discussion but decided to put my two cents in even though mine will be an unpopular opinion but I'm remembering we are all just sharing opinions, there's no right or wrong, just opinions and for some of us our opinions are skewed by personal experience as mine will be. Hubby basically had same thought process as you, why not do surgery because he'll always have SRT in his back pocket IF surgery didn't get it all. Truth be told because of other past medical history he was afraid of radiation more than surgery. Surgery had all the SE's you usually hear about except for the incontinence (he got lucky on that one). Here we are three years later and he's having to do radiation anyway.
I'm looking at your signature and on paper it looks good and as many have said would be prime candidate for AS, UNLESS, you turn out like my husband, who also looked really good on paper. He looked so good on paper doc was sure he'd get it all w/ surgery and never have to think about PC again. His PSA was lower than yours, he had more cores positive but here's the kicker of the story, his G6 doesn't BEHAVE like a G6 (how crazy is that?) no he didn't have slides sent out anywhere else but two different labs graded him as G6, however, on genome testing he came back right on the line at moderately aggressive. If you're considering AS or surgery I recommend Decipher or Prolaris testing (there's different views on that one too as to which is better) to see if your G6 is actually acting like a G6. I would want to have that peace of mind.
See now why my view is skewed? My husband's situation is rare but it happens and you don't want to be the one it happens to, thinking all will be well w/ AS or surgery when in reality it turns out you fall into that category. It's just a tale of caution and more to put in your research bank to look into so you can make the best decision for your situation. Whatever you decide has to uniquely fit your situation and comfort zone. I just wanted to provide some more information for you.~Miki

First of all, sorry to hear about your experience but I am very glad
you shared it as it gives more ammunition to throw at the Oncologist
I will be meeting with this Friday.

I do have a question for you.
If you could do it all over again, what would you have done differently?

eggbe said...
Maybe I missed someone mentioning it but you might want to consider HIFU now that it is allowed in the USA. I did have ED for a year but it cleared and no side effects after that.

Hi Eggbe,
I have been reading on HIFU and it looks very very interesting.
No radiation involved and SEs are minimal.
May I ask where you got yours done?

thanks,
Randy

LeoLuna,

I wish you the best result no matter what you choose. Like you, I decided I didn't want to chance surgery issues after I researced a bit. Nothing against those who go that route but it just wasn't for me. In your shoes with all available options I would look into HDR or SBRT. I was most comfortable with either of these options and consulted the best docs in each specialty. I ultimately chose SBRT since I found it to be the most attractive (least invasive) option currently available. Im doing my final treatment in the morning and its much less invasive than I thought. Very happy so far, no issues. Take your time and make sure you believe in your choice before going in and can accept what comes of it.

Good luck,
Frosty

Leo, Ok, so you're partway down the decision tree. I want to emphasize, that whatever decision you make, we will support you in it, and it will be the right one---for you!

I don't recall if you said where you're located, or how far you feel able to travel, so here are some questions to consider:

How much time can I take from work to do treatments? For example, standard EBRT treatments involve anywhere from 30-40 treatments over 6 weeks-3 months. Can you manage that?

How far away is the treatment location? See question 1. A 200 mile round trip every other day for 3 months would involve a LOT of road time.

What is the proven track record of my treatment choice AND the experience level of the team? HIFU is still considered to be experimental. Do you want experimental or tried and true?

A number of guys in here (Notably Tall Allen) went the SBRT route (5 treatments over 2 weeks) and have had great results. Some researchers think it will eventually become THE treatment of choice for low to intermediate grade PC.

I certainly would rule out IMRT/IGRT for all the reasons previously mentioned. Just too inconvenient and absolutely unnecessary. SBRT is generally five procedures. Permanent seeds and HDRBT mono-therapy is one procedure. All three provide the best cancer control, the lowest incidence of negative side effects of any of the treatments, no hospital stay, no cutting, etc. Used successfully by thousands of men. All have clear repeatable protocols and are widely available across the country for convenience. All covered by insurance for personal cost control.

As to HIFU, why go with something that has been proven to be less effective than these three radiation treatments? It is not approved as a general treatment in the USA, only as a form of salvage or focal treatment. It does not result in less side effects than these well known and proven radiation methods.
Where are you getting the information? It would be good to see. It is unlikely to be covered by insurance. Why? Because it doesn't work as well and as consistently as the radiation treatments. Please read the recent thread by a man who is now considering his third HIFU ablation because the first two haven't worked.

You are following a great method of ruling out unacceptable treatments being AS and surgery. Your reasoning is sound and fact based. But now you are diverging from your great methodology and looking at a treatment that is far inferior than the ones you have ruled out. If you are going to treat, then, I suggest you consider the proven methods that are well documented for success, that are in no way experimental or questionable in efficacy, that are covered by insurance and that have been used successfully by hundreds of thousands of men for decades.

You are very low risk disease. Why use an expensive high risk treatment method?

Get yourself to a few different radiation oncologists that use these different radiation treatments that you know will work well for you. They will be covered by insurance so you will have little personal cost. Take the $30,000 or more that the HIFU would cost, or 2 or 3 times that if the first doesn't work and buy a sports car or boat and go enjoy a cancer free, side effect free life.

LeoLuna said...
A.S. for me was never a serious option as I dont want to wait around until this gets worse....Cancer never gets better!

You missed the middle ground. Prostate cancer, unlike most cancers, often never gets worse. Insignificant, indolent prostate cancer often stays that way. In fact, for 55% of low risk men on AS it never progresses, even when watched for over 20 years.

In about a quarter of men with insignificant PC, no cancer can be found on repeat biopsies, and the number may go up to half if they are taking Proscar for BPH. I'm not saying it disappears, I'm just saying it may be so insignificant that it's hard to find.

I think most men will want to see a lot longer f/u data on HIFU, especially focal HIFU, before committing to it. That's the reason the FDA rejected it as a "cure" for prostate cancer. The mfrs of HIFU equipment got the FDA to approve it to ablate prostate tissue (as with a TURP), but some unscrupulous urologists tout it as a curative cancer therapy. The FDA has recently been cracking down on those who make such claims. It should not be done outside of an IRB-approved clinical trial. If you want to understand the issues, read this:

/pcnrv.blogspot.com/2016/12/focal-ablation-unresolved-issues.html

If you relate better to patient experiences with it, read this:

www.healingwell.com/community/default.aspx?f=35&m=3811334

I chose surgery, and 3+ years later, I still don't know if it was the right choice. For me, there were two major considerations beyond beating the disease. At the time, I assumed that both surgery and radiation were likely to cure me, and surgery seems to have done that. Well, I'm clean so far and the nomograms say I'm very likely to stay that way.

My first consideration was my sex life. Diagnosed at 51 and married to a woman I'm still wildly in love with, my sex life was/is very important to me. On this side of things, I leaned towards radiation and the possibility that I might not "shoot blanks" permanently.

I'm also a hypogonadism patient, and I was on TRT when the cancer was discovered. I was told that with surgery, I could potentially resume TRT in 6-12 months. It ended up being 6 months - the fastest my surgeon had ever approved someone to return to TRT. The therapy makes such a huge difference in my life that it was very important to me to get back to it.

In the end, I never expected the quality of orgasms post-surgery to be so poor. I'm thrilled for the men who report better or "as good as before" orgasms after surgery, but I'm not one of them. And, in the 3.5 years since surgery, even with TRT, they have gotten worse, not better. The desire is there. The fun is still there. But, there's a big build-up, and then nothing. There's just no "there there". At times, it's just downright depressing.

Now, I'm also a liposarcoma patient. This one is incurable, and it will do me in eventually. If I'd known about the liposarcoma (the tumor was already there but we didn't know it), I would have argued for AS with continuing TRT. Perhaps no doctor would have supported that option, but I would have fought for it.

But, if I'd known that my lifespan was going to be determined by liposarcoma rather than prostate cancer, I would certainly have leaned less towards surgery. By now, if treated by radiation, I'd be back on TRT, so it's easy to say I shouldn't have done surgery. I'm not sure if I believe that or not, but it's easy to rationalize.

I just know that PCa stole a lot from me, and I'm still pissed. Now, another cancer is going to steal everything else, and I'm even more pissed. All I've ever really wanted was to grow old with the woman I love, and to have a satisfying sex life with her.

Now, it feels like it's all gone.

And, before anyone can suggest it, I do see a therapist to talk about these issues. It helps, but the reality is that I've lost a lot already and I still have more losses coming.

I don't know if that adds anything to the conversation. Even if it doesn't kill you, this disease has the ability to just steal so much from us. Yes, liposarcoma is going to kill me. But, PCa took almost as much in terms of quality of life.


Damon