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Gleason Score 10/9- please suggest treatment plans

Berco
Posts: 7
Joined: Feb 2012

I am 57 and single, and was diagnosed with Cancer Jan 2012 and do not have any other symptons- Gleason Score of 10,9 (5+4) in 4 of the 6 sections of the Postate.PSA in Nov was 7.26.Of these 3/3 segments of the Right Lobe have 50-80% cancerous tissues and right base has less than 5% cancerous tissues. No lymphovascular invasion seen.
CT and Bone Scan-no metastasis but on DRE doctors feel cancer has gone outside the capsule.

Doctors recommending 2 different plans.
First Plan-surgery and then adjuvant treatment-Have 1 surgeon ready to do surgery and 2nd has ordered for urgent MRI on this Friday. Both surgeons categorically state that no treatment before surgery as this may make the surgery more complicated.

Second Plan - hormonal or chemo then MRI and finalize treatment.and if prostate outside capsule then no surgery.

They also recommend surgery be done in the next 2-3 weeks and I should not panic

Any recommendations please

Has anyone with this aggressive Gleason score and T2 tried HIFU?

Thanks

Prav

Kongo's picture
Kongo
Posts: 1167
Joined: Mar 2010

Prav,

I am so sorry that you have this diagnosis. As you know now a Gleason 5+4 is a very serious condition. I do not understand nor do I agree with a surgical approach at this point. Surgery is not going to stop the cancer once it has left your prostate. It will continue to grow and all that surgery will do is decrease your quality of life significantly.

I hope you are seeking second opinions. Hormone therapy can curb the growth of your cancer for some period of time. Eventually the cancer will become resistant to the drugs and continue to grow. Radiation treatment to your prostate will probably be at least as effective as surgery with much fewer side effects but with a Gleason 9 the likelihood that the cancer has spread to other parts of your body is a strong possibility.

I personally would never pursue chemotherapy but that's an individual choice.

HIFU is primarily for early stage prostate cancer and it seems to have a high rate of recurrence. I don't think it is appropriate for a Gleason 9 but I would confer with your medical team on that.

Best of luck to you.

K

tarhoosier
Posts: 181
Joined: Aug 2006

Pravin:
I believe your medical advice was incomplete. The chance of your prostate cancer remaining entirely within the gland, with a G 5+4, is minuscule. Thus surgery can only provide complications without cure. You must consult the best radiation doctor available. Your surgeon is doing no favors (to you) by offering surgery, or surgery plus X. In the mean time you should certainly anticipate taking a testosterone inhibiting drug ASAP, regardless of the choice.
The point here is that you need better advice, and certainly better advice than you can find here.

Timlong
Posts: 35
Joined: Nov 2011

A surgeon who can do good bladder necks will leave you with minimal urinary problems of which will improve over time. Weather or not this tumor has escaped...it seems logical to "get rid if the Queen Bee and then attack the workers". I would not want a damaged, radiated tumor left inside of me that could cause other problems down the road. Then your option for surgery is history. At your age a multimodel aggressive attack is the way to go. Through the book at it and dont look back. Make certain the your surgeon has at least one thousand Robotic assisted RP's under his/her belt and specializes in cystectomy. If your endorectal MRI shows spread into the rectal wall then no one will do surgery but with your numbers I doubt this.
I know some members are going to jump all over me for this suggestion but Prav deserves to hear it all.

Jeff

Kongo's picture
Kongo
Posts: 1167
Joined: Mar 2010

Sorry, Jeff, I certainly don't mean to "jump" on you but I couldn't disagree more with your bee theory. Getting rid of the prostate is going to do absolutely nothing to curb the growth of cancer outside the prostate. Remember that cancerous prostates don't kill us, it's the prostate cancer that lodges in other organs like the bone, liver, lung, brain that kills us. I am not sure where you get the idea that a "damaged, radiated tumnor" (presumably in the prostate) is going to cause other problems in the future.

Prav is faced with a serious diagnosis and he needs some serious advice from a variety of specialists so that he can adequately assess his options quickly and make a decision. Throwing bees and books at this are just bumper sticker cliches. He needs substantive advice.

In my lay opinion, surgery in this case (because of the wide margins necessary) runs a high risk of incontinence and erectile dysfunction and you are still going to need radiation so why mess with the surgery at all? Before the advent of robotic surgery prostate cancer surgeons almost never operated on a patient with a pathology like Prav's because they knew it would not do anything to help the long term survival or quality of life of the patient. Robotic surgery hasn't changed those odds.

Certainly your opinion is worthwhile and one that deserves to be heard. I think it is important for men newly diagnosed with prostate cancer to read a wide range of opinions as they formulate a plan to attack their disease. At the end of the day, however, the decision should be based on sound medical advice from professionals from different specialties. Hopefully Prav seeks multiple opinions.

With the techniques available today Prav has many choices that can provide many more years. To me, quality of life is an essential factor to keep in mind when balancing treatment choices and surgery for a Gleason 9/10 is going to adversely affect that quality, in my opinion.

K

Beau2
Posts: 228
Joined: Sep 2010

Hey Pravin,

Sorry you need to be at this forum.

While on another forum I came across a post that refered to a study that covered surgery for advanced PCa patients. I was a bit shocked by the studies conclusions. They were not what I expected. Since you are trying to decide whether you should do surgery, I've posted the study's first paragraph and a link to the study:

"Long-term survival rates for patients with advanced prostate cancer suggest they can be good candidates for surgery, Mayo Clinic researchers have found. Their study found a 20-year survival rate for 80 percent of patients diagnosed with cancer that has potentially spread beyond the prostate, known as cT3 prostate cancer, and treated with radical prostatectomy, or surgery to remove the prostate gland. Previously, patients found to have cT3 prostate cancer were offered radiation or hormone treatment, but not radical prostatectomy. The researchers presented their findings during the American Urological Association Annual Meeting in Washington."

http://esciencenews.com/articles/2011/05/15/advanced.stage.prostate.cancer.patients.experience.20.year.survival.rates.with.surgery

I've got to agree with Kongo that surgery may have side effects and surgery followed by radiation will not make things better for your quality of life.

Hope the study helps.

Best wishes and best of luck in your fight against PCa.

hunter49
Posts: 199
Joined: Oct 2011

Welcome to the club and sorry you had to join. You will find a great band of brothers and sisters here. I do not agree with surgery for your case. If the cancer has broken out then you will not remove it all and you can cut across the margins spreading cancer cells inot the blood stream. I would first look to some great clinics for second opinions on your slides and treatment options.. Hopkins and Sloan have great ones. Not sure where you are but I would check them out. Good luck and keep us in the loop as to what you decide.

Berco
Posts: 7
Joined: Feb 2012

Hi everyone

Thak you for all the suggestions and advice.Knowing how you have folks have battled this gives me a lot of courage and hope.

I am in Los Angeles.Which are the best places here.Have consulted UCLA and USC-Norris center.

Thanks

Prav

hunter49
Posts: 199
Joined: Oct 2011

I am not sure but I have a friend at Hopkins that works with Dr. Partin and will ask for recomendations.

hopeful and opt...
Posts: 1282
Joined: Apr 2009

I live , just south of Long Beach. Feel free to contact by private email if you wish.

It is my opinion that you require a medical onocologist who specializes in PC

Two are Mark Scholz and his partner richard Lam in Marina Del Rey www.prostateoncology.com 310 574-4002

Another is glenn Tisman in whittier ca 562 789-8822

There is also MaTTHEW REttig.......310-206-2436...who you may have seen at UCLA.

I am not recommending any surgeons, since I believe that having surgery will compound any side effects that you will experience, and is not appropriate.

UCLA , I think is ranked 3 as far as PC, and USC 4.

tarhoosier
Posts: 181
Joined: Aug 2006

Here is another vote for the Marina del Rey group including Scholz and Lam (and others). Top private PCa oncologists, respected around the country, accessible, unbiased, devoted to their patients. You could do very much worse and are unlikely to do better elsewhere.

Berco
Posts: 7
Joined: Feb 2012

Thanks. Are UCLA 3 and USC 4 nationlly? The people I a consulting are Dr.Arie Belldegrun(UCLA) and Dr.Gill(USC-ex Cleveland Clinic)
There are surgeons at Cleveland and Mayo Clinic who seem to be of the opinion that even for very aggressive cancer and T3 stage, the long term survival rates are much higher with surgery than with radiation.possiblr side effects of surgery are known and have to be able to fight and overcome them.
you can email me at pb1234@hotmail.com
thanks

hopeful and opt...
Posts: 1282
Joined: Apr 2009

Both UCLA and USC are nataionally ranked. As I remember UCLA is 3, and USC is not far behind. The USC ranking, I think improved in the last couple of years. Dr. Gill,is a wizz, on the lecture tour as well, was hired three years ago from the Cleaveland clinic, and is bringing in experts from the cleaveland clinic and elsewhere. He is a top surgeon. Additionally Dr. Gill hired other surgeons away from the cleaveland clinic who are excellent as well.

tarhoosier
Posts: 181
Joined: Aug 2006

Pravin:

If you are referring to this study:

http://www.psa-rising.com/med/hirisk/T3-hirisk05.html

it involves men treated 15-25 years ago. Radiation therapy has improved exponentially since then. Surgery is unchanged, robot or no robot. Also this study was NOT a trial and there has been no trial comparing the two treatments. The comparisons drawn are to two completely different groups of men with differing disease status, different health conditions, and so on.
The Mayo patients in this report above who had G 8 or greater were 18% of the total group and thus those who had G9 or G10 must have been a very small portion of the whole.

If the surgeons you are consulting are honest and are determined to de-bulk the tumor load as their intent, then good for them. If you go to surgery make sure that the surgeon will absolutely complete the surgery, and not close you if he sees more disease than he expects. Also be certain that the surgeon you consult will actually be wielding the scalpel/controls in the OR.

djs123
Posts: 102
Joined: Jan 2012

I am so sorry to hear about your diagnosis and will pray for you.
My husband was diagnosed in January with a gleason of 9 (5+4). Although he is about 20 years older than you, I will share what we have learned and decided.
We conferred with top specialists and all concurred that for his age, surgery was not an option. Perhaps at age 57 their reply would have been different, I can't say.
One thing the doctors pointed out is that with a gleason score of 9, radiation would also be needed as well as hormone therapy, even if he had surgery. They felt that stopping the production of testosterone with HT then followed up by radiation therapy IMRT 30 days later would have better results than surgery, without the complications of surgery.
That being said, I know his age was a big factor when his treatment plan was considered.
We had a my husbands slides sent to John Hopkins for a second opinion. When the slides were ready, I was able to speak with a doctor at John Hopkins who reviewed the slides with me on the phone. I had layed out the various treatment options we had learned about and he, without prompting from me, recommended the same treatment plan (HT & IMRT) that my husband's doctors recommended. Although the lab results were basically the same as the original report, it was very reassuring to speak with someone at Hopkins and confirm with him that we were going in the right direction.
This is a scary time and you must have confidence in the physicians you are dealing with. If you haven't had a second opinion on the pathology, I would definitely send them off to John Hopkins (your doctor can do that and it is a routine thing, he will not be upset you want a second opinion).
I wish you well and this very scary road, God bless.

Mikes2990
Posts: 6
Joined: Jan 2012

Dear Pravin-

I'm sorry to hear of your diagnosis. I too had a gleason 5/4. If, as your doctor believes, it is out of the capsule, you must be very agressive. Mine was.

Start the hormone therapy immediately. Whatever else you do, this is necessary asap.

Get a second opinion about surgery. I had the surgery done, and I'm glad I did. Yes, there are quality of life issues, but there are also quality of life issues with the hormone therapy. My concern, and perhaps yours as well, is with life itself, I can cope with some loss of quality if it helps me survive. After surgery (if you elect to do it) or directly, if you don't, radiation is also necessary. If the cancer has gone outside the capsule, but remains only in the pelvis, this should suffice. If the cancer has spread outside the pelvis, radiation plus chemo is probably be the right choice. One of the good things about the surgery is the doctors can check the seminal vesicles, the bladder neck, surgical margins and the pelvic lymph nodes.

Pour yourself a stiff drink and try to pull yourself together. This is a long fight and it will demand all of your emotional strength.

I went whole hog, hormone/surgery/chemo/radiation. Is this the best thing to do? I'm not sure and there are various opinions, but in a life or death situation, which, make no mistake, a Gleason 9 is, I don't want to look back and say to myself, I wish I had been more agressive when I could have. I'm glad I went the whole way, although there is no way to tell if I will win this battle.

Good luck and God bless.

Berco
Posts: 7
Joined: Feb 2012

Hi Mikes
Thanks for your inputs. In your case was it outside the capsule or contained in the prostate and how many years since you had your surgery?
I have 2 sets of recommendatiosn-
1. Surgery+ adjuvant as necessary- including preventive radiation. MRI done friday. If T3 and but not affected rectum wall then immediate surgery-no hormonal as this may impact the outside tissues and make the surgery more complex.Gleason 9-better to get as much out of your body at the soonest.
2.Hormonal-1 shot -then MRI after 8 weeks of biopsy as MRI done now may not be clear(biopsy done 4 weeks ago) and and then next step of treatment as there may be more options-if locally advanced then no surgery.
Meeting both this week to finalize.
Getting ready for the battle.
Good luck in your battle and with your attitude sure that you will win. The spirit and attitude are vital to winning the battle.
Prav

Mikes2990
Posts: 6
Joined: Jan 2012

My cancer had moved outside the capsule.

I had my surgery one year ago.

My PSA is zero, for now anyway.

If I were you I would not wait, I'd take option 1 rather than wait and see, but there is no one right answer for every case.

Keep fighting and God bless.

Mike

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