Going from AS to RP After 8 Years of AS - Advanced Prostate...

Advanced Prostate Cancer

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Going from AS to RP After 8 Years of AS

09rgs19 profile image
21 Replies

I am 58 years old and was first diagnosed in 2012 with PC after a biopsy with one core out of 16 with a 3+3 GS in 20% of the sample. Second biopsy in in 2016 showed 2 cores out of 6 (targeted previous area) with a GS of 3+3 in 1% of the cores. Had MRI in 2017 to get baseline reading and then had another MRI in 2020 which showed a slight area of concern. Had a MRI Fusion Biopsy based on last MRI reading two weeks ago which showed two cores with a 3+3 GS involving 40% of the core in one and 5% in the other. A third area (the focus area of concern from the MRI) which had 3 core samples from the same area showed a GS of 3+4 in all cores with 80% of each. Talked with my Dr this week who went through the treatment options and he did not think AS would be in my best interest and in the end it seemed we have determined a robitic RP would be the best choice given my age and no other health issues and not taking any medications of any kind. My PSA during this entire time has bounced between 2.5 and 6 with no spikes one way or another. Have asked for the samples to be sent out for genetic testing just so we can understand what the future growth timeline might be and will talk with my Dr once these are back. I am new to this forum and just would like to hear what others might think about my situation. Thanks.

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09rgs19 profile image
09rgs19
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21 Replies

You were lucky to spot it early. Hesitation will devaluate this advantage of yours. This does not mean that you have to act in panic. Take six months to learn all the fine print that no doctor will tell you. Spend the time to educate yourself so you can reliably become your own advocate. This is what I personally did, no matter if I was GS 4+4 pre RP.

Tall_Allen profile image
Tall_Allen

You may find more men in your situation at the following site, since you do not have advanced prostate cancer:

healthunlocked.com/prostate...

When I was making the decision for primary treatment, I took about 8 months and met with 6 different specialists. I suggest you take your time and decide not to decide until you have learned more. Urologists almost always recommend surgery - they'd better, or else they are in the wrong field!

The ProtecT randomized clinical trial proved that oncological outcomes are the same for men in your risk category (favorable intermediate risk). They differ in the side effects you can expect.

prostatecancer.news/2020/02...

Because you are younger (I was 57 when I was treated 10 years ago), you will have more time to suffer the side effects of treatment. For me,being sexually active, loss of erectile function was a non-starter, so I decided against surgery. I also did not want to risk spending the next 25 years of my life with pads.

In addition to surgery, there are a couple of different kinds of radiation you may want to look into - SBRT, a kind of external beam radiation finished in just 5 treatments, and brachytherapy (the radiation is applied from the inside). There are two kinds of brachytherapy - low dose rate (seeds) and high dose rate (temporary implants). The availability of these therapies can vary. IMRT is more widely available. Protons are usually not covered by insurance and so far have no compelling advantage. If all your cancer was in just one or two areas, focal ablation may be an option too (but there aren't any long-term data).

Here are some questions you may want to ask specialists when you meet with them - and some questions to ask yourself:

prostatecancer.news/2017/12...

prostatecancer.news/2017/12...

prostatecancer.news/2017/12...

prostatecancer.news/2017/12...

prostatecancer.news/2017/12...

09rgs19 profile image
09rgs19 in reply to Tall_Allen

Thanks for your input and apologies for posting on the advanced chat room. Will continue to do my research.

Schwah profile image
Schwah in reply to Tall_Allen

I’m surprised you advised to consider focal treatment TA. Based upon your previous posts and blog, I thought you were pretty down in that treatment. Had something changed?

Schwah

Tall_Allen profile image
Tall_Allen in reply to Schwah

I think all options should be considered. Some people are not troubled by the lack of long-term data. I think focal therapy has been oversold, and I am not convinced that it is no worse (in side effects or oncological effectiveness) than other therapies, but I am always open to new data.

fluffyfur profile image
fluffyfur in reply to Tall_Allen

Is focal treatment the one where you can't monitor PSA? That personally would worry me.

Tall_Allen profile image
Tall_Allen in reply to fluffyfur

I agree - that's just one of the downsides.

maley2711 profile image
maley2711 in reply to Tall_Allen

Allen -

It is somewhere buried in my bookmarks, but have you read anything written by Dr. Egggener on this topic...U Chicago I believe. Excellent summary re pros/cons as far as long-term expectations. Hmmm, search engines are great...searched my bookmarks ..this may be it......

grandroundsinurology.com/dr...

He seems to be devoted to prostate cancer care.....once replied to question I sent him...reassure me to "chill" !!

ron_bucher profile image
ron_bucher

I had non-robotic RP at age 54 15 years ago, and side effects have not been much of an issue. My biopsy Gleason was 3+4, and my RP pathology Gleason was “upgraded” to 4+3, which is not unusual. Advantages of RP include no more biopsies, more accurate pathology report, free vasectomy, external radiation is a good contingency plan, and PSA becomes a very good indicator of cancer status.

I’m currently enjoying my third remission, am very healthy, and glad I’ve used every tool in the toolkit. My side effects after RP, two separate rounds of IMRT, and chemotherapy are very minor inconveniences. With luck, I plan to live to 90+.

Cancer tends to be a life long battle you hopefully win by slowing it down each time it shows signs of advancing, practicing a healthy lifestyle, and being lucky.

The key to successful treatments are early detection and the skills of the medical teams doing the treatments. Best to be the 5,000th or later patient of each doctor who provides each treatment.

MNFarmBoy profile image
MNFarmBoy

Regarding RP, beware the surgeon's representations for "nerve sparing" to preserve erectile function. From what I've read, the success rate for that is only ~50% and depends on a number of uncontrolled factors. I believe the unlucky half end up needing injections for the rest of their lives in order to achieve an erection capable of intercourse. I think most of us consider that better than nothing, but I suggest weighing those risks and consequences carefully. Better preservation of erectile function is a recognized fundamental advantage for RT, as stated in the reply from Tall_Allen.

GP24 profile image
GP24

I would send the biopsy slides to Epstein for a second opinion. Pathologists provide different results. Maybe Epstein classifies this as Gleason 6 instead.

EdinBmore profile image
EdinBmore

Agree completely with TA.

Give yourself time to explore options. Second and third opinions. Read, videos, question. All essential for making the "right" decision for you.

I chose radiation - IMRT and bracy boost. Plus ADT (a bitch for me).

This is a great place to learn a lot and to get support.

Good luck to you.

EdinBaltimore

Re-read Tall Allen’s response. At age 56, my Urologist wanted to schedule me for surgery. I put the brakes on. I talked with seven who had RP and four who had Brachytherapy. I read every night on each procedure and looked at the numbers. Percentage wise, each had a 92-94% of success. I was a Gleason 7(4+3). Then I researched physicians. I was most fortunate that I lived within 45 minutes of the Texas. Education Center.

In the end I decided on Brachytherapy. I drive 200 miles to do this in San Antonio. Why? This area holds a very large population of retired military. In other words, more PCa per capita than anywhere else. My RO gave me a plan. BTW, he had done over 2000 procedures and maintained the same same stat - 94% success. Brachytherapy and then sent back home to his Air Force buddy, a professor and researcher at a major medical school who specialized in IMRT for a short course of 25 sessions...... as some say a “boost”.

Interesting seeing two different RO’s, 200 miles apart every month for almost a year....

Make your decision and don’t look back. I haven’t and if I had to do it all over again, I would do the same. Fifty-six is too young to risk erections without either an injection of Trimix or a pump, in my personal opinion.

Good luck either way.

Gourd Dancer

dadzone43 profile image
dadzone43

Not an emergency. You have plenty of time to figure out which is the better course for you. I did RARP. My friend did RT + ADT. At 20 months I am PSA-undetectable; so is he. I do not have erections; he does not need erections. I have excellent bladder control; he has excellent bladder control. My fall-back if PSA starts to rise will be RT. His fallback cannot be surgery. My age is 76; his age is 68.

maley2711 profile image
maley2711 in reply to dadzone43

Just wondering.....is it possible a guy on radiation doesnot need fallback to RT....as first treatment included the RT? wonder if any convincing studies? Is most recurrence caused by what was missed locally, or by metastasis that was missed in initial diagnosis?

dadzone43 profile image
dadzone43 in reply to maley2711

So many variables. Recurrance can be widespread and systemic. Recurrence can be localized (pelvic bed, bony metastasis). Local RT can help, as well as the emerging radium-223 (?) Treatments. As we heard last year at the MaleCare symposium in New York "this is a good time to have prostate cancer" 😞 because of all the emerging treatments.

You may want to research HIFU. It is the option I chose after being pushed towards radiation. I was considered a poor candidate for RP surgery after prior TURP surgery for BPH (enlarged prostate). HIFU promises minimal quality of life consequences. If you do go that route opt for full gland rather than focal treatment in order to have the best chance of attacking tumor activity. I had to go out-of-pocket but there may be some insurance plans that cover some of the cost. Almost 4 years post HIFU I remain pleased with the results and fully functional. Check it out.

maley2711 profile image
maley2711 in reply to

Thanks for that experience. Were you on Medicare? I have read that Medicare sometimes pays part of the $$ for HIFU? Also, I was not aware of full gland HIFU...thanks!!

BTW, is radiation a fallback after HIFU?

j-o-h-n profile image
j-o-h-n

Greetings 09rgs19. SLOW DOWN....

Click on top of video's on the title to play the video

youtube.com/watch?v=So0ZrTw...

Good Luck, Good Health and Good Humor.

j-o-h-n Thursday 09/03/2020 5:54 PM DST

maley2711 profile image
maley2711

many men are choosing the TULSA PRO ultrasound treatment, which in trials so far seems as effective as surgery or radiation with reported SEs much less!!! This treatment not yet covered....approx $30k. Also FLA, ie focal laser ablation, and HIFU, another form of ultrasound...partially covered I believe. If longer-term results hold up, TULSA PRO seems to be the closest to "perfect" cure.....knowing that there is no perfect cure.....and a "cure" is an inappropriate description of the hopes for any of these treatments.

fluffyfur profile image
fluffyfur in reply to maley2711

How does one know whether or not the treatment worked? At what PSA would you seek further treatment? How does that work if you have an EPE or cancer outside the capsule?

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