Active treatment (surgery, radiation)... - Advanced Prostate...

Advanced Prostate Cancer

20,784 members25,890 posts

Active treatment (surgery, radiation) vs Active Monitoring?

ColoradoBoy profile image
13 Replies

I was just diagnosed last month. Age 62. Dad and brother both had it. PSA gradually increased over years to 5.25. Gleason 3+4, cancer in 6 of 12 cores, PNI in one core, no extra-capsular extension.

I'm trying to decide on treatment modality. The surgeon & radiation oncologist both said I was in good shape, either treatment would work, pick one.

I started asking lots of questions, and the oncology nurse sent me a 10-year study that followed 3 groups of men randomly assigned to get RP (radical prostatectomy), EBRT (external beam rad therapy), and nothing (AM, Active Monitoring). nejm.org/doi/10.1056/NEJMoa...

At first I was shocked that anybody would let a researcher randomly select their treatment. But reading the study, I saw that there was damn little difference between the groups. RP and EBRT increase your 10yr survival rates by less than 1%, from 98.8% to 99.0% or 99.6%. All-cause mortality is almost identical. There are differences with % of disease progression and metastasis, but they're not huge differences. And of course surgery or radiation have their own risks and side effects.

I started to think, does it make sense to put my body through this treatment for such a small improvement in lifespan and disease progression? If it progresses, I can always choose treatment later -- there doesn't appear to be any (all-cause mortality) penalty for waiting. (At least not within the 10-year horizon of the study. I don't know what happens after 15 or 20 years.)

Meanwhile I've been researching various nutrients (curcumin, genestein, quercitin, green tea, resveratrol, etc) that are shown to slow or reverse cancer progress. Many of them selectively trigger apoptosis (cell suicide) in cancer cells and don't disturb healthy cells. ncbi.nlm.nih.gov/pmc/articl...

Maybe I could go with the "Active Monitoring" approach, and add in some of these apoptogenic agents to tilt the odds in my favor? Does anyone have any insights on that?

Written by
ColoradoBoy profile image
ColoradoBoy
To view profiles and participate in discussions please or .
Read more about...
13 Replies
Tall_Allen profile image
Tall_Allen

In the ProtecT trial, the only inclusion criterion was that the men had to have localized prostate cancer. This means that they allowed men who were higher stage (T2b and T2c), higher grade (Gleason score ≥ 7), and higher PSA (PSA could be as high as 10-20 ng/ml). In fact, they previously reported that, among the AS cohort:

•10% had an initial PSA between 10 and 20 ng/ml

•22% had an initial Gleason score≥ 7 (2% were GS 8-10)

•25% had a clinical stage of T2 - they do not break that into subcategories, presumably most were T2a

So, many of those higher risk men would have been screened out of a contemporary AS program. The authors did not analyze this higher risk subgroup to tell us how many of the 33 cases of metastases or 112 cases of clinical progression were among them, but they do report (Table 2) that of the 8 prostate-cancer deaths in the AS group, 5 were among men with Gleason score ≥ 7 at diagnosis (vs. 2 each for RP and EBRT). The remaining 3 deaths among those diagnosed as Gleason 6 was similar to the number for RP (3) and EBRT (2). It seems that all extra deaths were attributable to higher Gleason scores in their AS program.

For more analysis of ProtecT, you may be interested in this:

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

At age 62, barring comorbidities, I think you can expect to live for more than 10 years. With GS 3+4 in half your cores and PNI, you are not a good candidate for active surveillance. The risk of metastases is too high - it may not kill you in 10 years, but maybe in 15 or 20.

I recommend you get a second opinion on your biopsy from Epstein. It probably won't make a difference, but for $275, it's worthwhile to get the assurance:

pathology.jhu.edu/departmen...

For your intermediate risk PC, you have several good options including surgery, SBRT, low dose rate brachytherapy, and high dose rate brachytherapy. The good news is that the outcomes of all of those are not increased by ADT, so you can forgo that at least. I chose SBRT for myself, but I think that the other options are very good too:

pcnrv.blogspot.com/2018/10/...

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

So tell us, what option(s) did your Dad and Brother choose?

Good Luck, Good Health and Good Humor.

j-o-h-n Friday 09/13/2019 6:51 PM DST

My Fathers family is from Loveland Colorado. We love Co. my Father and his brother both had APC . My uncle died from it at 80 something. Are you stage #4.? Doesn’t sound like it . Hopefully not . Personally as one that got hit hard with kidney failure from APC I could not recommend watch and wait at 62 years old . Take care of this properly and with some help from above you could be around for an untold time .. None of us knows the future with APC .There are no guarantees .. We do know that once it gets around your vitals it’s a different ball of wax to deal with . APC is a killer in my opinion . I’d hit it hard and let the dust clear and start a new life . You’ll be diminished in many ways but you could live a long time if lucky in treatments . Android Detention drugs = ADT will effect you . Yet ,I’m not a doctor .. Follow professionals . Heal yourself ..I like the nutrients . Diet and exercise will help QOL...

zazi717 profile image
zazi717

Surgery, of course, asap.

Once the mets spread to the bones, cancer eradication will no longer be possible.

ERBT may be fatal- 5 gr dose kills a man, and to fight cancer cells 50 gr doses are often used, so if a slight mistake occurs the patient dies one month later of lung/ heart failure, and his death is not even associated with radiation. Not to mention bone marrow failure or new type of cancer that often results from radiotherapy.

brachytherapy is safer in case immediate surgery is not possible, but it does not always work.

Sorry to be so negative, I know you will be alright, but please do not repeat my mistakes, - truly the mistakes of our doctors who never really bothered to discuss their strategy with us. Get your cancer removed quickly!!!

in reply to zazi717

Agreed

ColoradoBoy profile image
ColoradoBoy in reply to zazi717

I believe you misunderstand the dosage units. A Gray is not just a unit of radiation -- it's radiation PER MASS, specifically Joules per kg. It's like energy "density" in the tissue. So 5 Gy is indeed the LD 50/30 value (50% deaths in 30 days) -- but that's for WHOLE-BODY exposure. With many kg of body weight, 5 Gy is a LOT of Joules. EBRT focuses the radiation precisely on the diseased tissue, only 30 or so grams of prostate. That's about 1/3000 the mass of a 90kg man, so it's way below the whole-body fatal dose. That small amount of energy IS fatal for the prostate, where the radiation was focused, but not for the whole body.

Analogy: if you lay out in the sun for 10 minutes; you just get pleasantly warm. But if you took all the solar energy that fell on your body and focused it onto your fingertip, you would destroy the tissue. That's the focused prostate treatment. Focus the equivalent level of solar energy across your whole body, and you'd get barbequed. That's the full-body 5 Gy LD50/30 exposure.

in reply to ColoradoBoy

I’m still glowing from 8weeks RT ... over four years ago .. I hope that is all that I will ever need . They told me that I had the max dos possible . I went to get an x-ray of my hips last year . Afterwards I came out to my car in the hospital parking lot only to upchuck my lunch and go down to my knees . Weirdness just seeing that radioactive symbol on the door .

ColoradoBoy profile image
ColoradoBoy in reply to

Wow. I had no idea RT would sensitize you to radiation long-term like that. Is that a common reaction ??

Bingo! You have made a very good start on this journey and started slaying a few dragons. You MUST assume you have small mets all over your body already (which is why the "cut and burn" does not work - as you found out in the statistics)! You cannot "Get it all!"

Many men at your early stage have turned things around just with a strict raw food diet (you have figured this out too) and added vitamins and minerals as needed. If that needs a boost (be patient - these things take time and you have time to experiment), use Sodium Ascorbate via IV. When that needs a boost, try combinations - adding 1 Xtandi capsule a week kept my PSA <0.1 for a long time.

CalBear74 profile image
CalBear74

If you are considering natural supplements and complementary medicine (i.e., treatment compatible with conventional medicine and cancer care), please understand at the University of Colorado School of Health Sciences-Denver, there is a cancer researcher Dr. Rajesh Agarwal. He is one of the leaders in evealuating IP 6 and Inositol in treatment of prostate cancer. Go to the website pubmed.gov and you will find numerous articles on IP6/inositol hexaphosphate/phytate. He is also on a video at youtube discussing one of his successful experiments.

I found Dr. Agarwal through a reference in the book "IP6 & Inositol"(available at Amazon) by AKM Shamsuddin, MD, Ph.D. at the University of Maryland Medical School, who has been studying IP6 for more than 20 years. I use IP6 powder and recommend it to you. Message me if you want more information.

CalBear74

I chose HIFU over radiation after being told that I wasn't a good candidate for RP after TURP surgery 10 years prior.

ColoradoBoy profile image
ColoradoBoy

Hi all, thank you for your inputs, sorry for the slow response. I was out kayaking with friends yesterday. :-)

Tall_Allen , you hit precisely the point that I was thinking: those studies include men with every possible grade of cancer. A group of Gleason 9 patients is going to have very different stats than a group of G7, and similarly a mixed group (ProtecT) will be different than a G7 patient (me). So it seems like the stats should be overly pessimistic for someone with G7, 5.25 PSA, T1c, etc. And in spite of that you still say I'm not a good candidate for AS. Damn. That's what the radiation oncologist said too.

If I'm not a good candidate for AS because of metastatic risk, what about the risk WITH treatment? I thought the concern was that metastases could already have seeded into the rest of your body. But I guess RP/EBRT must prevent future metastases or they wouldn't have better metastatic outcomes.

2nd pathology opinion: Johns Hopkins charges $275 for a 2nd opinion!??? Good @%@#, the pathologist in Denver billed me for $3000 !! Which seemed like robbery at the time, but in comparison to JH... but probably a lot of the extra cost was for prepping the slides &etc, steps that JH wouldn't have to repeat. I'm leaving the country in a few days but I will see if I can get the slides sent to JH before I go.

j-o-h-n , Dad and brother both chose RP, though 25 years apart. (Dad about 1995, brother 3 months ago.) Dad had nerve damage and had started using penile injection (which was a very weird thing to learn about your dad when you're 40). Unfortunately he was diagnosed with lymphoma right after getting the all-clear on his prostate, and it was 7 years downhill after that. Brother is insisting I should get surgery. He chose it so obviously it's the ONLY right answer. Plus his urologists at Mayo are telling him horror stories about radiation options, stories that do not jive with the ProtecT results.

zazi717 , you sound like my brother. :-) The stats from e.g. ProtecT don't reflect the dark future you associate with EBRT. All-cause mortality is basically identical to RP, so none of the mystery deaths you mention. Other than some colon issues (temporary bloody stools, etc) and 0.6% higher chance of metastasis, EBRT has better stats than RP.

Hidden , not stage #4. I'm T1c, not sure how that maps to stages.

CalBear74 , I will keep Dr. Agarwal in mind. Meanwhile my local cancer center has an integrative medical specialist, a retired urologist, and I will be speaking with him.

Hidden , I know almost nothing about HIFU. But it may not be relevant for me; webmd.com/prostate-cancer/p... says it hasn't been approved for cancer treatment in the US. Probably why my docs didn't mention it.

ColoradoBoy profile image
ColoradoBoy

Hi all, lost track of this forum and just found my way back.

After reading a 20-year-followup study, I decided against AS. AS **might** do OK for 5-10 years, but it goes downhill fast after that. So on the 10th I will be doing seed implants.

Just for added excitement: they did an MRI to "map out the territory." My doc and I were joking, he was telling me how lucky I was because seeds are so effective, etc. Then he got the MRI results and the mood suddenly changed. Enlarged lymph nodes throughout my body. Lymphoma is possible. (Which scared the livin' shit outta me, since PCa and then lymphoma is what slowly killed my dad...) Doctors tell me if it's lymphoma it must be a real non-aggressive type, or I'd be sick as a dog. Had minor surgery on Wednesday to excise a few nodes, hoping for a positive test result for a change. Fingers crossed.

You may also like...

Surgery vs Radiation: seminal vesicle invasion

My 65-year-old husband was diagnosed with prostate cancer in August 2019. Initial PSA 22 (free PSA...

Is surgery, radiation or Lu-177 therapy appropriate for my case?

Hello everyone, I am 60 years old and was diagnosed with prostate cancer (Gleason score 9) that...

Radiation treatments.

be getting radiation treatments on L5 vertebrae. Was told that 30% of the bone is cancer. Once the...

Abiraterone vs Enzalutamide + Radiation

undergoing radiotherapy. It is well known that radiation therapy can elicit a beneficial...

Active Surveillance \"v\" treatment for Early Stage Prostate Cancer

this study was that some of the headlines suggested that men were having \\"unecessary...