My first post: I'm 64 years old, in... - Prostate Cancer N...

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My first post

owenpop profile image
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I'm 64 years old, in excellent health and have an extremely full life in every sense. The hammer dropped a few months ago and I feel like I've got a really good mental attitude. I'm grateful that the cancer I have is prostate and not a different kind cancer. Since the diagnosis (from the biopsy) I've gone completely plant-based for diet and I've never felt this good in my life which is not something I would have anticipated.

Here's what I know about my cancer. I'm s Gleason 7 (3+4), T2 and my PSA was 8.6. My urologist/oncologist is connected to Cedars in West Hollywood and I like him very much. (So much that I never sought a 2nd opinion).

My prostatectomy is scheduled for this next week but I'm having some unrelated physical/health issues and there's a good chance I'll have to reschedule the surgery.

This extra time on my hands has led me to dive a little deeper into researching other potential avenues to deal with this. I've ruled out HiFu ($$$) and active surveillance is definitely off the table.

So, I'm left with SBRT as a serious option that I should consider. I have an appointment with Howard Sandler (Cedars) who is a radiology oncologist so I should have his opinion to consider alongside surgery.

(disclaimer: My urologist/oncologist did not steer me towards surgery. He laid out my three options equally.)

Deeply appreciate this forum.

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owenpop profile image
owenpop
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50 Replies
Tall_Allen profile image
Tall_Allen

It is a big mistake to not get opinions from all specialists, no matter how much you liked your urologist or how evenhanded you thought he was. Urologists just don't know the details of the other therapies in the way specialists do. I met with 6 before deciding. You can always reschedule your surgery. I highly suggest you talk to Mitchell Kamrava at Cedars-Sinai. I know Howard Sandler and think the world of him, but Kamrava does both HDR brachytherapy and SBRT, which you owe it to yourself to learn about.

Here are some questions you may find useful:

pcnrv.blogspot.com/2017/12/...

pcnrv.blogspot.com/2017/12/...

pcnrv.blogspot.com/2017/12/...

pcnrv.blogspot.com/2017/12/...

owenpop profile image
owenpop in reply to Tall_Allen

Thanks so much for taking the time to reply so thoughtfully. Will heed your suggestions.

Adf2529 profile image
Adf2529 in reply to owenpop

This forum was very helpful to me, and Tall Allen in particular, in deciding to do SBRT at UCLA with Dr. Chris King. After being on AS for a year plus, I was diagnosed with low volume 3+4, a year ago. I spent about 9 months visiting specialists in many centers of excellence. I considered all options available to low/intermediate risk prostate ca patients. A determinative comment was made to me by one of the top RP specialists/ urologists in the nation who performed or had been involved in more than 20,000 operations in his career. He said, his goal for the remainder of his career was to reduce the number of cases he would have performed by surgery by 40%. I took his meaning to be; there is too much risk with this surgery of life-defining, negative impacts. Although I considered ablative treatment, including the newest addition to the arsenal TULSA PRO, I ultimately decided on SBRT which I completed a few months ago. Good luck on your journey!

owenpop profile image
owenpop in reply to Adf2529

thanks for sharing that

Handdrummer777 profile image
Handdrummer777

Thanks for coming to us for feedback and advice. Recently I've been expressing dismay at the poor odds -- essentially 2-1 against -- for erectile recovery from RP, when all the nerve-sparing is factored in. I've been arguing, Why damage nerves, create immediate incontinence and ED, and not even have the odds in your favor to recover sexual functioning? You don't know how many posts from men who are in treatment regret from RP I've seen in this forum.

It's not under dispute that radiation fares better for ED than RP. Yes, there is a 50% chance of some ED developing 9 mos-2 years after RT. With SBRT that's been minimized, if it comes up at all.

Please consider radiation instead of RP, unless there's an incredibly compelling reason for RP.

owenpop profile image
owenpop in reply to Handdrummer777

Copy that.

Jimhoy profile image
Jimhoy

I was offered the options of both surgery and radiation and don’t recall any bias!! Both would be accompanied with 24mo’s ADT (SoC changed to 18mo now). I was told they were virtually equal to each other regarding successfulness so I went with the less intrusive of the two. This allowed me to continue work with a simple schedule changes!!

At my last appointment (30mo’s since Dx) Dr said “there is no sign of active cancer”. Whereas that sounds like it was legally written, I’ll take it and I think my choice was a good one!! Peter is starting to come around now too so I got that going for me too!!!!! Its going to be like the organ playing in a cathedral for a while but hopefully time will correct that!!!

Best of luck.

Jc

jazzy53 profile image
jazzy53

I would think that the Cedars-Sinai program has a tumor board where the full range of specialists (surgeon, radiation oncologist, medical oncologist, etc.) discuss a patient's lab results and come to a consensus as to what should be done. This should mitigate any bias that a particular specialist has. Not true at C-S? I get my care at Johns Hopkins where this is standard practice. Radiation with ADT was their top recommendation. I then bounced this off a urologist with the Harvard system, who confirmed the recommendation. And so I went with it. I don't particularly like the treatment (who does?) but I'm satisfied that I'm getting the right treatment for my disease.

in reply to jazzy53

There's still going to be a bias. I am betting that no one at that institution is an experienced HIFU practitioner so you are unlikely to get that recommendation if it is even mentioned. I chose HIFU over external beam radiation. I've heard too many stories of problems after radiation.

TFBUNDY profile image
TFBUNDY

Your diagnosis is exactly like mine. I am fortunate in living in the UK where proper medical treatment is free of charge. I went the HIFU route. No regrets and seems to have done the job. Don't underestimate what a prostatectomy means and what you will lose. If you have HIFU, radiation remains a future possibility, as does more HIFU. TULSA looks very good too. Don't panic. I took 7 months mulling over my options. Try to keep the lid on it with metabolic control and supplements in the mean time. Losing your prostate is a Big Deal. It's not tonsils or an appendix. If costs are a factor shop around - India can be good and low cost. Don't be USA centric in your search. Good luck

owenpop profile image
owenpop in reply to TFBUNDY

Thanks for sharing. Very much appreciate your shared experience

Neewor profile image
Neewor in reply to TFBUNDY

I'm also in the UK with exactly the same diagnosis. If you don't mind me asking, where did you have the HIFU done? Was that available on the NHS?

TFBUNDY profile image
TFBUNDY in reply to Neewor

Hi. HIFU in the UK is done under the INDEX study. A clinical trial. Of course it is free of charge in the UK, like all cancer treatment. Mine was done in Southampton, but the London hospitals do it too. Imperial, or UCHL have a lot of experience.

Neewor profile image
Neewor in reply to TFBUNDY

Thanks. I'm just at the start of my journey with prostate cancer so I'm looking at my options. HIFU seems like one of the preferable treatments if my next round of tests are favourable.

TFBUNDY profile image
TFBUNDY in reply to Neewor

Message me if you think I can help in any way or if you want to know my experience of the procedure and aftermath

in reply to TFBUNDY

Yes, another person on this site informed us that HIFU in Germany was only 1/3rd the cost here. Insurance here I believe is also at least partly on board in covering HIFU.

apuscion profile image
apuscion

What about HIFU

owenpop profile image
owenpop in reply to apuscion

HiFu is very pricey. $25000 to start. Also, both sides of prostate have cancer though right side is minimal.

TFBUNDY profile image
TFBUNDY in reply to owenpop

Yes mine was bilateral with a 12mm diameter tumor at the apex. The HIFU chewed up 40% of my prostate across the mid line. My only remaining problem 12 months on is restricted flow which can be sorted. I think some have reported HIFU costs in Germany at $16,000, but don't panic and take your time. Don't let a greedy surgeon ruin your life. I am appalled by the way medicine works in the USA from reading this forum. Following HIFU I was in the train home the following day. HIFU for my difficult case was a 2 hour procedure and I stayed in overnight because I was done late in the evening. I suggest you postpone your operation while you think and research your options. Message me anytime.

owenpop profile image
owenpop in reply to TFBUNDY

in a life or death situation, i would have no issue coming up with the $25k. my sense is that the three options on the table (surgery, SBRT and HiFu) are all effective however HiFu is not covered by insurance.

in reply to owenpop

Check with your insurance. I thought I heard on this site that some insurance may be at least be partially covering it. BTW, although my biopsy revealed tumor activity on only one side of the prostate my HIFU surgeon recommended and performed 'full gland' as opposed to 'focal' ablation. Why not do a thorough job. I had had TURP surgery years prior, which is a good idea for full gland ablation.

hifuprostateservices.com/20...

Currumpaw profile image
Currumpaw in reply to owenpop

Hey owenpop!

As both sides of your prostate are involved If you choose ablation, only the very best and brutally honest doctor. He may tell you ablation isn't your best choice. How successful an ablation will be or not will help you make your choice.

Once you do make a decision to have a treatment, don't look back look forward.

When you are getting treatments, biopsies, whatever, be careful of fluoroquinolones, Cipro and Levaquin are commonly used. They can kill you. Rocephin and Cefdinir can be substituted. I have been literally crippled by these drugs and after years it appears that I will never heal. They also can cause aortic aneurysms.

Currumpaw

in reply to Currumpaw

Boy, I’m on board with non use of those two antibiotics. I had way to much of both. Thus neuropathy persist. There was a class active suit againt levoquin causing neuropathy. Says right on the color bottle that it drive joint damage..

Currumpaw profile image
Currumpaw in reply to

Hey Lulu700!

Used twice more after I reported an adverse reaction! Wow! Just for biopsies! Should have never been to me! I even asked both times. The second time I was assured that "I'll only use Levaquin" that it would be okay. That is the one I am having real trouble with.

Be careful of yourself. The aortic aneurysms are real. 100% more in those who have been given the fluoroquinolones. Of course at our ages--that can happen is what is said. I wonder how many men have been seriously harmed or died as a result of using these drugs?

I believe there were five of us assembled and of the five, three of us had adverse reactions to fluoroquinolones.

Currumpaw

in reply to Currumpaw

Big money in that levoquin.. They still try to give it to me . I refuse .. I was strep carrier until I was 40 . I have my tonsils and I d get strep 2-3 times per year. x40 not good.. Antibiotic overuse since I was a kid is one thing I d blame for my immunity raging on pc . I just took keflex for a tooth extraction . No choice ..Like it or not the damed antibiotics keep us alive from infection . Or we all would have been gone by now. Trade off for sure. I feel the same about adt .

Currumpaw profile image
Currumpaw in reply to

Hey Lulu700!

Rocephin and Cefdinir can be used as substitutes. I know men whose urologists used these antibiotics as a prophylactic to prevent sepsis during biopsy procedures.

There is no excuse nor has there been for years to damage us by using the fluoroquinolones.

Currumpaw

in reply to Currumpaw

You are on top of this . I hope others listen . Good day!

dadzone43 profile image
dadzone43

nothing to add to Tall Allen's advice.

Except to wish you well. How fortunate to be so close to Cedars/Mt Sinai. I have enjoyed good support, good guidance and good care here in Providence, too.

I must add that I have not always accepted the advice of my oncology team as I was not willing to submit to the side effects of ADT in addition to RP. The team are guided by Standard of Care -- and I get that. I am guided by the life I need to live, even if shortened a few months by PCa, So far, I am a year post-op with non-detectable PSA and without breasts, brain-fog, soft bones, loss of stamina, loss of muscle and loss of libido. Living a few more months in my nineties is not as good as living well in my seventies.

Adf2529 profile image
Adf2529 in reply to dadzone43

Good point.

owenpop profile image
owenpop in reply to dadzone43

Unclear, did you decided on the prostatectomy?

dadzone43 profile image
dadzone43 in reply to owenpop

I had that 12/4/18. After the surgery I was again recommended "salvage" RT + ADT. "It's the standard of care." I declined when I ask for specific benefits to doing that. The oncologist finally came up with 3-6 added months of life. Not his fault: they have to project from some pretty scant information for comparison. I told him that 24 months of the Hell of ADT was not a good trade-off for 3 extra months of life. I would (and will) reconsider if my PSA starts to change. That's me; others would have a different response. "Prostate cancer is not a cornfield; it is a meadow."

owenpop profile image
owenpop in reply to dadzone43

🙏🏽

dadzone43 profile image
dadzone43 in reply to owenpop

good luck on your journey: may the road rise up to meet 'ya

Currumpaw profile image
Currumpaw in reply to dadzone43

Hey dadzone43!

I have to say that you made the right choice. You look good, no one would know.

For those of you on HU, I know dadzone43.

He is the first in my time, with my reluctant interest about this disease, which is now 6 years, to organize a prostate cancer support group in our area. He deserves to be acknowledged for that.

Currumpaw

dadzone43 profile image
dadzone43 in reply to Currumpaw

[blush]

Vitruviusman profile image
Vitruviusman

I was with Dr. Katz at the Clinic on Robertson Blvd at Cedars. Cedars is the best. I have my concerns about radiation. I have known 3 guys who choose radiation and the cancer came back 4 months after radiation stopped. THat is not to say that others have had better success but these 3 guys did not. They ended up having the operation anyway. One of them, the cancer came back after the operation , after 6-8 months and they put him on the female hormones LUPRON. You are in good hands at Cedars. I was with them for 3 years under a special study. I had the prostectomy done in Arizona not Cedars. I would have better off if I went to Cedars. Lets talk more about your options. I might be able to provide more information to you so you can make the best decision for you.

Flydoggy profile image
Flydoggy

Always a good idea to pay attention to Tall_Allen...this is a man who knows his stuff. Good luck with your decision, it is really great you have so many options at this stage. Be thorough in your research.

owenpop profile image
owenpop in reply to Flydoggy

thanks for your words

407ca profile image
407ca

Owenpop,

No matter how much you like your uro, you should get second opinions and talk to other specialists. Even a great uro does not know everything about the other treatments, only the specialists do. Better yet, talk to a couple specialists in each field. A good doctor does not feel threatened or being second guessed by a patient getting a second opinion.

All the best

owenpop profile image
owenpop in reply to 407ca

well put

Currumpaw profile image
Currumpaw

Hey owenpop!

A Gleason 7 composed of a 3+4 is close to a 6.

What type of imaging have you had? It is most important to know that which you are dealing with. A mp 3.T MRI is the best today and it depends upon who is reading it. If you have a tidy, tumor, well confined to the prostate you are an excellent candidate for AS if you are comfortable with that. You have already made some wonderful lifestyle changes by becoming a vegan.

HIFU could be good, or even better, FLA, Focused Laser Ablation. The fact is, the advances today, present time, with FLA makes it a very focused and successful ablation as some of the doctors performing have become very skillful. It is newer than HIFU. The learning curve is ending. Think of it this way. For the price of a cheap car you will avoid all or almost the side effects that a prostatectomy will leave you with. It isn't what the outcomes that FLA had in 2015, 2016. 2017 or---it is where certain doctors are today--NOW--those that have exited or are close to exiting that learning curve are --their skill level. FLA is something you may wish to look into.

I haven't had FLA nor do I know or have even spoken with any doctor that does FLA but--I have been following their careers and success rates for a couple years and have talked with some of the men that have had FLA.

The urologist that uses the da Vinci feels that is the best.

The urologist that uses radiation--yep--that's the best. My first uro told me NO! At my age then, 62 and with my health, secondary cancers from the treatment was a consideration not to be discounted--however--I do know someone that had radiation twenty plus years ago and has so far been fine. Remember--20 some years ago Gleason 6's were treated!

Proton therapy--nothing better!

HIFU--been around--has a history--many benefits.

Hyperthermia! --uhhh---

A special diet and enemas too! In a foreign country---uuhhh --NO! You have changed your diet yourself. You don't need them!

You are going to hear all types of advice from different people. Read it. Listen to it. Think it over. Talk it over with those close to you if there are any. Don't rush.

If I were you, and I'm not you, the most pressing thing for me would be the best imaging possible to see if I would be comfortable with AS. If you get a mp 3.0T MRI, for a few hundred dollars one of the more noted experts will read it for you but you should speak with whoever you choose before getting the MRI. A 3+4 acts very much like a 6 --if it is nicely contained within the capsule. Some men just can't be comfortable and want "IT" out now! If that is you, stop reading now.

Read about DR. Ruth Heidrich. Use your search bar to access videos by Dr. Charles "Snuffy" Meyers, Dr. Laurence Klotz and Dr. Greger.

In bore biopsies with the mp 3.0T MRI are the safest today. This pulling a core out because it looks like it might be something and getting in the double digits is old time.

You know what happened to Hep-C. Jimmy Carter was given weeks to live and they gave him an immunotherapy which killed his cancer. If you get it out, they can't put it back.

You have to do what you are comfortable with.

I wish you the best.

Currumpaw

Addendum:

I should have mentioned that some of the men that are choosing FLA are now being compensated in part.

nycrunner profile image
nycrunner

Hi

Do your research into the 3D Urology Clinic in Xiangtan.

I went there and met a number of US chaps and they swear by the treatment received from Dr Soong.

There were others from UK, Netherlands, Australia Canada.

The word is getting out on the impressive results being achieved.

Non invasive and no side effects.

I had GS at 9 and PSA 51 and it took 6 weeks but by then the tumor was gone.

Others with less advanced PC are there for 4 weeks or so.

Cost is a factor but accommodation and food etc is very inexpensive.

A 3 mile taxi costs 12 yuan or USD 2.00.

Under no circumstances should you have surgery.

Check out the YouTube videos and contact John Kennedy from New York.

I met John in Xiangtan and found him to be a wealth of knowledge.

He can answer all of your questions.

Good luck

RunnerGrl profile image
RunnerGrl

My husband is 3+4, biopsy confirmed by Dr Epstein at John Hopkins after a 3T MRI by Dr Busch. If you are confident that you only have 3+4 and you are eating plant based maybe you should reconsider AS? My husband takes fenbendozole and eats plant based. His PSA is down from 10.5 to 6.5 since April. Our plan is 3T MRI’s every 9 months to watch his tumor and then do FLA if needed. Good luck with whatever you decide.

owenpop profile image
owenpop in reply to RunnerGrl

That's so great! Nice going to you both! Thanks for posting!

Murph256 profile image
Murph256

I think you need to take these responses in context. On average, for men in your category, surgery is probably around 70% successful. Men who have successful surgery and who are “cured” move on with their lives and don’t post here. Men who’s surgery was unsuccessful and who have had a recurrence likely develop advanced PC, undergo further treatment and tend to seek out information on forums like this one.

Furthermore, men who have had successful surgery, which has spared both nerve bundles, and who do not have to undergo any further RT or ADT tend to recover most or almost all of their sexual function. Those guys aren’t posting here either.

So my point is, these replies are not from a random sampling of men who have undergone RPs. Rather they are from guys like me, who had a bio-chemical recurrence after surgery, and have had radiation, ADT, chemo, etc, all of which progressively degrades sexual function.

Handdrummer777 profile image
Handdrummer777 in reply to Murph256

Still, the odds overall for erectile recovery stand at an aggregate of 37%. Good point you're making. But with the advent of SBRT, TULSA Pro, FLA and HIFU, I still don't see how RP is an attractive choice.

I know you've been through the ringer. But if you could do it over again, would you have still have had the RP?

Murph256 profile image
Murph256 in reply to Handdrummer777

No, I wouldn’t. But at the time, I was hoping the cancer was confined to my prostate, and that I would have no recurrence after surgery. I’m sure you were too.

Unfortunately, that didn’t happen. Now I am just going to manage my disease for the rest of my life. And if I’m only just managing my disease, I wish I had done that with as few side effects as possible. Oh well...

Hindsight being 20/20 and all that....

owenpop profile image
owenpop in reply to Murph256

Thanks Murph256. I've learned so much from taking the risk of posting earlier this week. The men on this forum are an incredible bunch. I'm so glad I found you all.

in reply to owenpop

I wasn’t a candidate for surgery . The fact that you are is good news. Yes , if done correctly and if your pc is well contained then a rp can be curative .,But so many guys have it and then find its escapes a bit ..ooops , then RT ,or chemo and of coarse adt . Maybe you are one of the lucky ones that could be cured by an rp..Every treatment has side effects .. consult expert but I’d suggest don’t stall very long . My opinion is the sooner you get treated the sooner you recovery and get back to living . If sex is your goal , you are out of luck . If you can have sex now , then tear it up while you can . This our truth of APC .. You choose treatments and life fully knowing that you will be deminished. Hold dear what you love in life and heal yourself . I’m a big fan of holistic diet and nutrition. I just feel that the more good you put in the better your results will be . Welcome to the club. You’re going up live a long time . Follow expert advice and you will do well as possible.. murph256 has a relevant point. The guys that were cured with a successful rp ain’t here whinning because they’re clear ., Because my prostate Had exploded no surgery for me . You have option s. That’s good .. good luck !

in reply to Murph256

Great point!

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