49 years old Gleason 7 leaning toward... - Advanced Prostate...

Advanced Prostate Cancer

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49 years old Gleason 7 leaning towards Tulsa what do you think?

Paver1 profile image
37 Replies

I’m 49 years old, I had a 3 tmri and biopsy at Busch Center, he said it was contained. I sent for second opinion at John Hopkins Gleason 7 3+4, 18 mm tumor running 10 mm along wall no bulging. 6 mm tumor 4+3 perineural invasion. 7 mm tumor 3+4 perineural invasion . Pattern 4 Cribriform morphology. I seen a surgeon at Vanderbilt he suggested surgery. Im going for a bone scan at Vanderbilt in 2 days insurance will pay for that so I figured why not. Also genetic testing in October. Busch said 1 ejaculatory duct would need to be removed. I’m curious why not do total ablation with all I have going on, is the recovery or side affects worse than the partial ablation? I noticed less sensitive orgasm in the past week.This has caused great concern in a rush to get treatment. Any input would be greatly appreciated. I have pretty much decided TULSA PRO at Busch Center unless someone can give me a reason not too.

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Paver1
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37 Replies
Tall_Allen profile image
Tall_Allen

Read this before deciding:

prostatecancer.news/2016/12...

If there is any benefit to thermal ablation of prostate cancer (and the jury's still out on that), it is because side effects may be less with FOCAL treatment. What you are proposing - RADICAL treatment with TulsaPro - negates any such benefit. In fact, it is not at all clear that thermal ablation effectively kills all the prostate cancer in the prostate. The FDA has not approved it for that purpose because of the lack of evidence.

Gleason 4+3 with PNI and cribriform morphology and a large tumor near the capsule and possible seminal vesicle invasion should be treated as "high risk." The best results for "high risk" patients is with a combination of external beam radiotherapy, brachytherapy boost (BBT) to the prostate, and 18 months of ADT:

prostatecancer.news/2018/03...

prostatecancer.news/2020/04...

Vanderbilt isn't the best place to get BBT. Try Radiotherapy Clinics of Georgia.

All of these therapies (ablation, BBT and surgery) will give you dry orgasms for the rest of your life. If you are interested in having more children, you should bank your sperm.

As for ED, radiation is your best bet for preserving erectile function because nerves are unaffected by radiation. When there is ED from radiation it is caused by scar tissue occluding blood vessels , which you would get with whole gland thermal ablation as well. Incontinence is rare with radiation. However, urinary retention occurs in 17% of patients getting BBT.

Paver1 profile image
Paver1 in reply toTall_Allen

Thank you for the links and information, I really appreciate your input.

Schwah profile image
Schwah in reply toPaver1

Listen to Tall Allen. He has tons of valuable knowledge.

Schwah .

in reply toPaver1

If you chose the HIFU, you will most certainly have buyers remorse and you will then be back asking what treatments are available for metastatic prostate cancer. Get the Radiation with beachy boost. That is your best opportunity for a cure or long term control.

Paver1 profile image
Paver1 in reply toTall_Allen

What’s your thoughts on ablation, to remove the big stuff(large tumors) and if any things missed hit it with proton. My thoughts are less radiation treatments. I have a consultation at provision in Nashville Monday. (Dr Gray)

Tall_Allen profile image
Tall_Allen in reply toPaver1

I hope you read the link. Here it is again - I updated it yeasterday with some new data from a disappointing HIFU trial:

prostatecancer.news/2016/12...

Pay attention to the section "Incomplete ablation in the ablation zone." What you imagine occurs with thermal ablation is not what actually happens. The necrotic tissue protects the surviving tissue from radiation. To be effectively destroyed by radiation, the tumor tissue must have an adequate blood supply. That blood supply may be cut off by the previous ablation, and then the hypoxic tissue cannot be killed by subsequent radiation. Also, multiple treatments increase the probability of side effects.

The radiation alone, in several fractions and with sufficient intensity, is fully capable of destroying even the largest tumors. There is something called a "simultaneous integrated boost" which means an extra dose to the largest tumor that some ROs will do, but its use is controversial - it may be unnecessary and only increase side effects.

prostatecancer.news/2016/08...

Of course, the advantage of brachy boost therapy is that it boosts the dose to the entire prostate to an extent that protons or IMRT cannot. Possibly, SBRT can provide the extra radiation, but that is experimental:

prostatecancer.news/2017/03...

Dr. Kishan tells me that they have had no local failures on high risk patients.

billy1950 profile image
billy1950 in reply toTall_Allen

Hi Tall_Allen,I had a bone scan and 3T MRI where they found a small pi-rads 4 lesion in the prostate. Bone scan is clear according to the RO...The next thing is having a MRI guided biopsy. That will tell more information about the size of lesion, etc. I had radiation in 2004-5. My latest PSA in January was 1,67...My sense is that i would like to have some kind of Focal Ultrasound...Currently, is there any one best treatment option among FLA, HIFU and Tulsa Pro. I did read some of the studies that you have put on here.

Thanks, Billy

Tall_Allen profile image
Tall_Allen in reply tobilly1950

The best numbers are from focal brachytherapy

prostatecancer.news/2017/09...

But any of them are better than salvage RP. Whatever you do, don't do that.

TeleGuy profile image
TeleGuy

I would give RP serious consideration. You are young and can handle surgery. If your cancer is all contained, then you will be done with it. Mine turned out not to be contained (2 positive lymph nodes), but what I got from surgery no residual PSA from the prostate gland. And no gland signaling or seeding metastases. Any PSA that I have is due to metastases. So when we see a detectable PSA, we know that there is something to be done. If you go down that route, then finding a highly experienced surgeon is important to maximize continence and minimize sexual side effects.

Paver1 profile image
Paver1 in reply toTeleGuy

Thank you for the advice

tallguy2 profile image
tallguy2 in reply toTeleGuy

I agree. Radiation treatment is fine initially but if the cancer progresses after that and an RP is needed one will be incontinent for the rest of his life.

If It’s fully contained an rp is your best shot at a cure. Still, many men get an rp then they find it Wasnt completely contained then they need to move to chemo or RT anyway. I wasn’t a candidate for surgery . You are , and that speaks volumes in your favor right now . Good job catching it way before I did . T_A has a lot of knowledge here. I’m just a smuck with APC . But He knows things that some doctors won’t tell you . Surgeons want to operate .. Ro ‘s wish to radiate .. you will do what’s best for you . Sometimes it takes a day or so for many to chime in . Ask a lot and arm

Yourself with knowledge. Good luck young man . Scott 😎

Paver1 profile image
Paver1 in reply to

Thank you Scott

in reply toPaver1

The road starts out bumpy. But I think that you can pave it over .. Be well

timotur profile image
timotur

What is your PSA? Talk to an RO about Brachy-- you still may be able to do mono-therapy Brachy without ADT if no LN involvement. Ask your RO about this and if you should get a PSMA-scan before starting ADT. My Stg 3 tumor with SV involvement was upgraded to Stg 4 after finding positive LN node at PSA of 23. I did HDR-BT + IMRT + ADT.

Paver1 profile image
Paver1 in reply totimotur

Psa was tested 2 times 6 weeks apart 9.6 and 9.7

timotur profile image
timotur in reply toPaver1

Excellent, you’re catching it relatively early. Good luck on your treatment decision.

StayPositive1 profile image
StayPositive1

dry ejaculation? egads

in reply toStayPositive1

No big deal. Sensation is the same..... and, there are benefits...... :)

in reply to

Awesome 👏🏼

treedown profile image
treedown in reply toStayPositive1

Had it my whole life due to issues when an infant, been on ADT almost a year , what's a orgasm?

rscic profile image
rscic

If the cancer gets to the seminal vesicles that is a real problem as various authorities feel this is a major route the cancer uses to get into the bloodstream.

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 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 considering that carefully, as that is a fundamental advantage for RT, as stated in the reply from Tall_Allen.

mistersafety profile image
mistersafety

Hi Paver1,

I've had 2 HIFU procedures that bought some time. Here's my take:

I get that TULSA PRO looks like it might be a solution with the least side effects and this is very attractive for such a young guy such as yourself. Another potential plus is that TULSA PRO <might> be better than HIFU because they can use more energy, potentially killing the more heat resistant cancer. Skill and experience of the surgeon is very important -- it's not just about the technology. Lack of robust data on outcomes of this procedure is a downside; you would be a pioneer.

Plan for next steps in case you have recurrence. Ask your docs about how they would deal with the scar tissue from ablation in future prostatectomy or brachy treatment.

Good luck with whatever you decide. PM me if I can be helpful.

Mr Safety

in reply tomistersafety

Great advice!

Paver1 profile image
Paver1 in reply tomistersafety

Thanks for the input. You have had quite a journey so far.

Currumpaw profile image
Currumpaw

Hey Paver1!

Dr. Busch has an excellent reputation. He is highly regarded. You do have quite a bit of cancer though and a 4+3 among them. The largest tumor is as you said "running along the wall".

There is much going on in your prostate. Have you heard of FLA? As far as ablation is concerned I would consider a second opinion from Dr. Karamanian who practices FLA and is one of the best. The top docs that practice FLA have exited the learning curve. If he was in agreement that focal treatment was viable that would be a second opinion for ablation. Then the choice would be yours to make. I have followed both Dr. Busch and Dr. Karamanian and have great respect for both and do not recommend one over the other or type of ablation. That is entirely up to you whether you even consider what I suggest.

In the first link that T_A posted Dr. Karamanian responds at the bottom. That was also three years ago and there have been advances and the experience level is greater. Same with HIFU. It is more accurate than in the past. One tumor confined within the capsule, even a Gleason 8 would be, maybe, more viable for this treatment. You have quite a bit going on and in some tricky areas and also something "brewing" with the cribriform.

If you do have the ablation of either type one of the positive aspects is that an ablation ca be repeated if necessary and viable or--the conventional treatments can still be done. My greatest concern would be that the cancer might be missed, recur and then might well escape the capsule.

Again I have the greatest respect for these two doctors and what they do. The decision is yours. You are young and one of the most important factors in choosing a treatment is the span of life ahead of you. At the age of 49 it is a hard decision. You may wish to place longevity at the top of your priorities when choosing a treatment.

T_A mentioned dry orgasms for the rest of your life with ablation, not so. The volume is reduced for most men that have ablation procedures and some do lose ejaculation entirely depending on their status and the volume of tissue ablated. With surgery? We had a back forth this week I believe on the subject of "CLIMACTURIA"! Not the kind of liquid ejaculation one wishes! Has any urologist or even your primary care mentioned climacturia to you?

You might also wish to speak with a therapist dealing with continence before whatever you choose and prepare for the worst while hoping for the best.

My best to you!

Currumpaw

Paver1 profile image
Paver1 in reply toCurrumpaw

Thank you so much for taking the time to share your knowledge, I have considered Dr K but I read some where that Tulsa can actually ablate slightly closer to the wall, dry orgasm is not a concern I’m not planning on having anymore kids. No one has mentioned climacturia I’m going to google it now, I was told that continence would not be a problem, one of the reasons I favored ablation. I do very strenuous work every day, operate machinery,etc.

ck722 profile image
ck722

Have an RP and be done with it. Get that cancer bag out of you and life will be good. Dry orgs are different but good. Futz around and ya might get some mets. Then it's drugs for life.

My 2 cents.

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

49 years old? With all the new meds and procedures being discovered you will be around for at least 40 more years.....Look how much money you'll save on the cost of condoms.....

Good Luck, Good Health and Good Humor.

j-o-h-n Wednesday 09/02/2020 6:12 PM DST

Paver1 profile image
Paver1 in reply toj-o-h-n

Thanks for the positive thoughts. Lol

j-o-h-n profile image
j-o-h-n in reply toPaver1

Keep em that way!!! And keep posting here.... lots of talent.....

Good Luck, Good Health and Good Humor.

j-o-h-n Wednesday 09/02/2020 10:02 PM DST

rfarley01 profile image
rfarley01

slow down and get different opinions from 1 or more knowledgeable urologist.. become your OWN research advocate

rfarley01 profile image
rfarley01

check out Cyberknife at Birmingham's Brookwood Hospital Dr Fred Dumas Looks like you are in Georgia, also get opinions from CTCA south of Atlanta

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.

Paver1 profile image
Paver1 in reply toron_bucher

Thanks and it’s good to hear from someone who has had it for 15 years and doing well, with positive attitude.

billy1950 profile image
billy1950

Paver1,

What is happening about Tulsa Pro? Have you had it and if so what has life been like? I am weighing my options as a salvage treatment after radiation. Tulsa Pro is one of them.

Bill

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