Newly diagnosed and full of questions - Prostate Cancer N...

Prostate Cancer Network
2,138 members1,043 posts

Newly diagnosed and full of questions

GreenBloke
GreenBloke
27 Replies

3 years ago I went to my GP about retention and poor flow, my PSA was just over 4, I had an MRI showing benign enlargement, and my 10-point biopsy was negative.

Last Sept my PSA was 11, prompting a retest. This time the "digital" test revealed a lump, the MRI showed it too, and a 12-point biopsy showed 3/12 contained active cancer cells - 2 in the lump but also 1 in the body of the organ. All Gleason 4+5, and apparently T2/N0. An 18F-cytosine PET-CT scan showed no hotspots outside the prostate, so it looks like we've caught it early!

Given the aggressive type I'm already on testosterone-suppressing pills, and now trying to decide between surgery and radiotherapy. The surgeon sounded quite persuasive, right up to him saying that in my case he couldn't spare the nerves, so I'd be left impotent!

I've yet to meet the oncologist and get their take, but reading up on it I already prefer radiotherapy. Locally I can get external beam, and my Macmillan nurse thinks I may be suitable for high dose-rate brachytherapy too, but we'll see.

I'm gradually getting my head around all this. One thing that has confused me and my partner is that the story has been changing. Immediately after the biopsy the docs were saying this was a routine case, low risk, no rush etc. Then I was given the MRI last thing late on Christmas Eve and started to worry! Now I get the impression they think the cancer is serious and could escape at any moment. The surgeon said he doesn't usually bother with hormone therapy before the op, but "in my case" he would prescribe Bicalutamide, which I've just started. I know that's also the precursor to implants and radiotherapy too if I go that route and I'm very happy to put the cancer "on hold" hormonally anyway, but which route should I go? I know I know, wait and see what the oncologist says, but suddenly I'm feeling the urgency too!

27 Replies
oldestnewest
baw1955

GreenBloke, many learned responses will follow -- and the feedback will be invaluable to you. My situation was quite similar to yours, until the Gleason 4+5 was stated. I had a few 4+3's in my biopsy results (June 2018)-- did my research, waited four months and had RRP (Oct 2018). Fingers crossed I am "cured", my first PSA after surgery (Jan 2019) was <0.006.

That said, my passion about this whole PCa thing is for guys who pass through the window from "early detection" to a situation you are in -- deciding if the genie is out of the bottle or not? I am so very much in favor of surgery when the procedure will "get it all". Mentally, I can deal with a relatively short incontinence stage, and a much-longer ED phase (yes, I so badly want an erection that does not happen), and not worry about treatments and side-effects for the rest of my life. I was 62 when diagnosed last year.

Are you pragmatic about the 2-3 year gap between your biopsies, and how your treatment options may have taken different paths if you had another data point say a year or two ago?

1 like
Reply
GreenBloke
GreenBloke
in reply to baw1955

14 months ago my PSA was 7 and the consultant was I think looking for a doubling, so we left it another year. Given that 3y ago I was clear this has developed quite fast and yes maybe could have been caught a year earlier ... but if I'd never gone to my GP I wouldn't know any of it, so I'm ahead of the game.

Reply
GreenBloke
GreenBloke
in reply to baw1955

In my case it seems the lump is at the surface and may have already involved the nerves, so the surgeon says he'd have to take them out too, i.e. permanent impotence! And a higher chance of irreversible incontinence too. Which is of course better than dying IF it's unavoidable, but you can see why I want to explore the radiotherapy option!

Reply
Tall_Allen

The therapy with the best record of success is the combination of external beam radiation to the whole pelvic area plus a boost of radiation to the prostate itself using brachytherapy. HDR Brachytherapy may help prevent urinary side effects (mainly retention, not incontinence).

pcnrv.blogspot.com/2018/03/...

1 like
Reply
GreenBloke

That's very interesting thanks. It'll be interesting to see what my oncologist has to say about the EBRT/HDRBT/AD combo...

Reply
Tall_Allen

If you have his email, send him the Kishan study in advance of your meeting, so he has a chance to review it first.

1 like
Reply
GreenBloke

I don't know who I'm meeting yet, but I've printed and will take a copy...

Reply
Longterm101

Does radiation and HDR brachytherapy shrink the size of the prostate ?

I have a large prostate

I understand the Lupron may reduces the size by approximately 30% but will radiation also shrink it

Reply
Tall_Allen

Yes, eventually. Mine went from 60 cc when I had radiation to about 25 cc currently.

Reply
Longterm101

Did u SBRT only or seeds as well ?

Reply
Tall_Allen

SBRT

Reply
Longterm101

Any particular reason you didn’t select seeding ?

Brachy boost ?

What was your Gleason?

Reply
Tall_Allen

I had low risk - preferred SBRT to HDR brachy for convenience

Reply
Longterm101

Understood

Thx

Reply
Stellabell

You need more information. Many teaching colleges have programs that will review all your test results and set appointments with a surgeon, radiation oncologist and medical oncologist in the same visit. I used the service at Duke medical center. I was told that for my high risk cancer, I would need a full session of IMRT regardless of whether I had surgery first or not. And ADT for at least 18 months. I chose to skip the surgery (better chance of keeping sexual function) and went straight to the radiation. Three weeks out now and no major side effects yet. If you can access my previous posts, they will walk you through the decision making process. Good Luck!

1 like
Reply
Hidden
Hidden

Your age is also an important metric.

Gleason 9 is aggressive and there would be no way that your urologist could anticipate this. Does not look to me like the story kept changing as much as the information became better. RT carries similar risks of impotence as surgery--even so-called nerve sparing. This difference for some men is that the impotence develops later instead of immediately. And the ADT therapy will also affect potency and sex drive. None of us can tell you what to do with the exception of DO NOT DO NOTHING. Too risky with G9 (unless you are 80+ ). Recommend that you read the Scholz book Key to Prostate Cancer for up-to-date guidance. Good luck with your decision making. Good that you and your partner are talking about this.

1 like
Reply
MelbourneDavid
MelbourneDavid
in reply to Hidden

I am convinced that radiation causes less severe Erectile Dysfunction than surgery. The statistics for post-treatment ED are very poorly collected with a crude questionnaire that can't distinguish between using viagra to help and needing injections for any erection, and easily counts men with surgical penile implants as never having had a problem.

Reply
Don_1213

GreenBloke - I'd suggest reading a number of books - The Key to Prostate Cancer, Scholtz; and Guide to Surviving Prostate Cancer, Sr. Patrick Walsh.

Then read ncbi.nlm.nih.gov/pmc/articl... carefully. I'm not suggesting that you use this treatment regime - but study plus several others I've read about are showing quite good results for IG/IMRT and ADT when the IG/IMRT is done on a modern machine with modern software. It is what I've chosen to do. I also wanted to avoid surgery (and my MD's uniformly recommended against it for me due to hypertension, some peripheral artery disease and a few other issues).

My treatment consisted of 45 total radiation treatments (81 Gray), with 25 on the prostate and general area, then 20 "boost" treatments targeting the prostate. I'll be on ADT for a total of 18 to 36 months, depending on how things shake out and what the recommendations are when I get to 18 months (the number of months on ADT is currently thought to be: 18 months give measurably superior results to 6 months; 24 months gives superior results to 18 months; and it isn't clear if 36 months is superior to 24 months)

You will likely (or already have) heard from the Brachy/IMRT/ADT fans. It's probably a good treatment and worth considering, but the recent studies on IG/IMRT/ADT are showing it's not the only good treatment, and the IG/IMRT/ADT is less invasive. Side effects are probably similar.

Some studies showing the brachy/IMRT/ADT being superior are comparing it to older radiation treatments. This is a problem with any study on radiation treatments - the capabilities and precision of the machines giving the treatment have advanced dramatically in the past 10 years, so any study including results older than 5 years old probably isn't reporting on the treatments done today - it's comparing/reporting older treatments.

I'd suggest talking to a younger Radiation Oncologist - one who is up to date on current standards of care, and I'd also shop the machine you might be treated on a bit. The machine I was treated on was a Varian "EDGE" - which has IG/IMRT, plus RapidARC (radiation is delivered while the head of the machine moves around you in an arc), which does pre-treatment imaging and delivers a dose with a great deal of precision. There are some other current machines from other manufacturers - but I don't know their names.

The change in urgency is related to that G9 - it's generally considered not a good thing to wait around with a G9.

Don (also a G9, 5/4 or 4/5 depending on which read of the biopsy is believed..)

1 like
Reply
Don_1213
Don_1213
in reply to Don_1213

A slight update. PSA test 6 weeks after completing the radiation treatment was "undetectable". My doctor's seemed quite happy with that. I hope it continues.

Reply
GreenBloke
GreenBloke
in reply to Don_1213

Thanks for the update. I'm going with IMRT/ADT. Indeed I've done the Bicalutamide phase and have been on Goserelin for nearly 2 months now, and about to start radiotherapy next Thursday! After which I'll have another 3 months minimum of ADT, then I guess it's the wait-and-see phase. Hormones are making me feel a bit weird and cranky, so I wouldn't want 2 years of them...

Reply
Don_1213
Don_1213
in reply to GreenBloke

3 years was the standard of care for high-risk patients, then some studies showed no advantage over 2 years. The latest studies have shown 18 months is about equal in "curing" high-risk PCA as 24 months, with a much lower rate of long term side-effects caused by the ADT. I gathered that from talking to my Medical Oncologist (a leading US East Coast researcher), and from reading the studies.

So my current plan is 1 more year of ADT. I think I can make it though without going too crazy.. :)

Good luck with your treatment. I hope in a few months you can also report "undetectable"..

Reply
wdwest165

In my case, I was diagnosed with 4+4 and 3+5, considered aggressive, PSA 7. My urologist recommended radiation over surgery as the local radiation center has a record equal to, if not surpassing, surgery results. I was taking Lupron injections for the first 5 months, both prior to radiation and then during the initial phase. I refused further Lupron treatment due to side effects. The plan was 6 weeks of daily radiation therapy followed by 2 weeks respite and then implantation of the seeds. I'm a control freak when it comes to my health and didn't like the idea of not being able to reverse the procedure if the side effects were too onerous, so much more focused radiation was given for an additional two weeks. The goal with radiation is to achieve a PSA of 0.50 or less. My PSA has steadily decreased and is now at 0.23 and I still have a functioning prostate. My urologist is happy with the results and my next followup appointment is in one year with every 6 month PSAs.

I feel the decision regarding radiation vs surgery should be based on the results obtained where you would be having the radiation treatment vs the reported effects of surgery. The center where I was treated reports their results and so might yours.

Since all of us are unique, my results may not be yours. I'm glad I opted for radiation and wish you the very best in the future.

1 like
Reply
tucker_man

Great input so far. The only thing I'll add is the advice to get a second opinion from a better surgeon (assuming there are better ones around). While it's possible your current surgeon is just being blatantly honest with the ability to spare nerves, you might get a different opinion.

1 like
Reply
GreenBloke

I think there's only the one in Taunton, but more in Bristol and Exeter. I'll ask!

1 like
Reply
tajohnston

My biopsy results were a Gleason score was 7/10. Stage T1A

After talking to several doctors I choose "Robot Assisted Laparoscopic Radical Prostatectomy (RALRP)". After the operation (January 14 2019) I spent over night in the hospital and was released the next day at noon. The catheter was removed 10 days later. Post op the results of lab show Gleason score was only a 6 not 7. Less cancer then biopsy indicated, however cancer stage T rating moved from stage T1A to T3A N0. The cancer was almost out of the prostate. Lab results showed that there was no cancer in the lymph nodes. My PSA levels were non detectable at 6 weeks. PSA will be retested at 3 months post op. I have no incontinence except when I cough (had a bout of terrible flu) a few dribbles. So far I have no erectile issues. The doctor originally thought that because of the location of the cancer that he would not likely be able to save the nerves and blood vessels but because of the precise movement during RALRP surgery he was able to spare damage to the important nerves and blood vessels. So far 2 months post op things are very close to normal.

Hope this helps you with your decision.

Reply
GreenBloke

Thanks. I'm a G9 T2 but borderline - the surgeon thinks my nerves could have been infiltrated so will have to come out. I'm waiting to see what the oncologist says...

1 like
Reply
tajohnston

I am 65. I felt the same but after investigating and talking to various doctors I found out that they can't tell until they actually can see the prostate how bad it is. I probably would have had bigger issues if I had gone with the first Urologist's opinion. I am so grateful that I asked for a second opinion. In Kingston Ontario I met with 3 different Urologists. They all had different specialties. They all gave the pluses and minuses of each method of treatment. I just met with the doctor and at 2 months he cannot believe how well I am doing. I am normal. Don't be afraid to get other opinions and ideas.

1 like
Reply

You may also like...