Trying to decide treatment and finding the right doc.

Was Dx in December, and am looking for the best surgeon and/or RO in the Omaha area. If there are any suggestion please let me know. Still trying figure out the best treatment route. What a great list.

Tumors in the apex, high gleason scores, high core involvement, my recommendation would be seeds, external beam and ADT combo therapy, not surgery.

I can't help with the local docs. If you are able to, you may want to consider travel, to where the known entities are.

I would consider starting ADT meds now, while you research your options. Your report puts you in the high risk category

As the others have said, you may or may not be an ideal candiate for surgery.

What I would suggest is that you visit highly experienced doctors in both major forms of treatment.....

.....consult with a radiation oncologist AND a uro/surgeon to learn the pros and cons of both forms of treatment, including how it might pertain to your personal case.

After doing this, you'll have a more informed base of knowledge from which to make a good treatment decision from which one makes you feel most confident in.

Yes, you have a higher Gleason score, but a cure is still possible if the PC is still confined to the prostate or not beyond the surrounding tissues. And your stats indicate that it IS still confined to the prostate.

With a Gleason 8, you would want to do a through study and then make a decision sooner rather than later.

Good luck!
Chuck

Resident of Highland, Indiana just outside of Chicago, IL.
July 2011 local PSA lab reading 6.41 (from 4.1 in 2009). Mayo Clinic PSA Sept. 2011 was 5.7.
Local urologist DRE revealed significant BPH, but no lumps.
PCa Dx Aug. 2011 at age of 61.
Biopsy revealed adenocarcinoma in 3 of 20 cores (one 5%, two 20%). T2C.
Gleason score 3+3=6.
CT of abdomen, bone scan both negative.
DaVinci prostatectomy 11/1/11 at Mayo Clinic (Rochester, MN), nerve sparing, age 62.
My surgeon was Dr. Matthew Tollefson, who I highly recommend.
Final pathology shows tumor confined to prostate.
5 lymph nodes, seminal vesicles, extraprostatic soft tissue all negative.
1.0 x 0.6 x 0.6 cm mass involving right posterior inferior,
right posterior apex & left mid posterior prostate.
Right posterior apex margin involved by tumor over a 0.2 cm length, doctor says this is insignificant.
Pathology showed Gleason 3 + 3, pT2c, N0, MX, R1
adenocarcinoma of the prostate.
Prostate 98.3 grams, tumor 2 grams. Prostate size 5.0 x 4.7 x 4.5 cm.
Abdominal drain removed the morning after surgery.
Catheter out in 7 days. No incontinence, occasional minor dripping.
Post-op exams 2/13/12, 9/10/12, 9/9/13 PSA <0.1. PSA tests now annual.
Firm erections now briefly happening in early mornings, 2 years post-op.

Much of the outcome depends on the skill of the surgeon. That's why it is so important to be sure that the surgeon has done a minimum of 300, whether it is open or robotic.

Continence should not be an issue in the vast majority of cases if the surgen is top notch.

That's why I felt much more confident & comfortable in having my surgery at Mayo. It has been my immediate family's primary healthcare provider for decades, we we've seen first hand how wonderful a facility it is.

And I was very pleased at being 100% continent within just a few weeks after surgery.

I'll be honest, though, and say that the anticipation of going through a surgery (my very first) scared the $h!t out of me, although I was later pleased at how smoothly and painlessly it turned out.

In my own case, surgery was my only logical choice, though, because I was not a good candidate for brachy and the Mayo radiation oncologist said that, while EBR could cure the cancer, it could not cure the severe BPH I was experiencing.

So perhaps I was "lucky" in that logistics made the treatment choice for me. In fact, I had said in years prior to my Dx that, if I ever had PC I would opt for surgery as a blessing in disguise so that I could stop standing over the toilet for 15-20 minutes at a time. Now it's 15-20 seconds & done. LOL

There are NO absolute guarantees in ANY treatment, whether it is surgery or radiation. But we must make our decisions, based on our personal thoughts and situations, and not look back.

John T, seems like you thought out your options very carefully and made a great decision for your particular case. Glad to see that you continue to have great PSA results.

So far so good for me also. May everyone end up as pleased at their decisions as we are of ours.

Chuck :)

Resident of Highland, Indiana just outside of Chicago, IL.
July 2011 local PSA lab reading 6.41 (from 4.1 in 2009). Mayo Clinic PSA Sept. 2011 was 5.7.
Local urologist DRE revealed significant BPH, but no lumps.
PCa Dx Aug. 2011 at age of 61.
Biopsy revealed adenocarcinoma in 3 of 20 cores (one 5%, two 20%). T2C.
Gleason score 3+3=6.
CT of abdomen, bone scan both negative.
DaVinci prostatectomy 11/1/11 at Mayo Clinic (Rochester, MN), nerve sparing, age 62.
My surgeon was Dr. Matthew Tollefson, who I highly recommend.
Final pathology shows tumor confined to prostate.
5 lymph nodes, seminal vesicles, extraprostatic soft tissue all negative.
1.0 x 0.6 x 0.6 cm mass involving right posterior inferior,
right posterior apex & left mid posterior prostate.
Right posterior apex margin involved by tumor over a 0.2 cm length, doctor says this is insignificant.
Pathology showed Gleason 3 + 3, pT2c, N0, MX, R1
adenocarcinoma of the prostate.
Prostate 98.3 grams, tumor 2 grams. Prostate size 5.0 x 4.7 x 4.5 cm.
Abdominal drain removed the morning after surgery.
Catheter out in 7 days. No incontinence, occasional minor dripping.
Post-op exams 2/13/12, 9/10/12, 9/9/13 PSA <0.1. PSA tests now annual.
Firm erections now briefly happening in early mornings, 2 years post-op.

Check out
http://www.yananow.org/Links.shtml
Great site for info, plus you can check survivor stories and tailor the search , seeing how others fared with similar stats with different treatment methods.
Good luck, I know what you are going through.

The most difficult part for me was the research, consultations, testing and decision process.
Once I was comfortable with a treatment it was a huge relief

w0hll,

I don't know anyone in Omaha, unfortunately. Combo therapy - external beam radiation (IMRT) to the whole area with a brachytherapy boost to the prostate itself has the best results in high risk cases like yours. You can get the brachy done in one place and the IMRT done in another place. The closest brachytherapist I know and would highly recommend would be John Hayes at GammaWest in Salt Lake City. He specializes in a kind of brachytherapy called HDR brachy, where nothing radioactive is left inside. This would involve one overnight hospital stay. The IMRT part of the treatment would involve 5 weeks of daily treatments that you can have done locally, or you can have that part done in SLC as well.

Another option is Dr. King's new high risk protocol using SBRT at UCLA. It is very convenient because it involves only five 5-minute treatments, rather than 5 weeks of treatment. SBRT has been used on about 100 high risk patients so far, and the results are very good so far with very low incidence of urinary, rectal and sexual side effects. This would be part of a clinical trial.

- Allen

I am wondering why radiation is a better choice than surgery. My GP said surgery is what he would choose.

Are the scan reliable. The CT , bone scan and MRI were all negative.

I have contact at Mayo so that may be an option.

My dilemma.
Top RO at Nebraska Med Center says I am a t3a. Recommends 28 months of ht and 40 external treatments. Says he would bet if I had surgery there would be pos margins. Says he would make this recommendation to his family member.

Went to Mayo in Rochester .. Both the Uro and the RO there said I am t2a with no extension outside.
Uro said surgery was ok. RO said 4 months or HT and 38 V-MAT treatments.

Don't know who to believe. Would like to do the surgery if possible, but don't want to have to turn right around and have do radiation right away.

Any insight would be very helpful. I am glad this list is here. Lots of good information.

Thanks

Carl

Not unusual for a urologist/surgeon to recommend surgery and for a radiaiton oncologist to prefer some form of radiaiton. The syndrome of a hammer seeing every problem as if it were a nail that needed to be hammered.

This is where a medical oncologist who specialized in prostate cancer can be a great resource since the medical onco has no vested interest in either remedy.

Starting hormonal therapy while you decide can't hurt and might help, dependig on how long it takes you to decide, and also on what your ultimate deciison is.

You at least arrest any further growth of the advance prostate cancer due to th 4's in your Gleason scores.

There are some nuances to the Lupron that we can advise on later if you decide to go that route, but an early one is that some oncologists advise taking Casodex 2 weeks before and 2 weeks after the initiation of the Lupron shot to prevent the so-called testosterone flare that is a temporary T-rise before it begins to fall, if you do not take the Casodex.

LupronJim

I did surgery without reservation with higher Gleason than yours. SRT can be done after surgery, SRP is very difficult after RT. That was my reasoning in my case. This is decision you must make and not look back on. Tough, but you will make the right decision for you. All the best!
Cheers, Doug

I now know more about prostate cancer treatment than I ever wanted to know. After a few mistakes, and a few winners, I have a little experience to share.

The numbers of the original poster are similar to mine, and reflect a likelihood of advanced prostate cancer. That means, among other things, that it is going to be around for awhile and signfiicant treatment will be necessary over the remainder of the poster's life (which I hope is a long time). Accordingly, it is very important to find a good "medical oncologist" specializing in prostate cancer. Urologists know how to cut the cancer out; radiation oncologists know how to radiate the tumor. A "medical oncologist" knows how to manage the cancer and its treatment at all stages; he will refer an appropriate urologist and RO.

My oncologist happens to be at MD Anderson (I highly recommend); I have also consulted with oncologists at Duke (very good); and at UNC-CH (same). My friends I have met at MDA also claim that the Mayo Clinic and the Cleveland Clinic have excellent medical oncologists. This is not intended to be an exhaustive list, but it will give some places to start.

I also note that I live in NC, so MDA, Duke and UNC all coordinate treatment to cut down on my travel time. I spent about $6K in travel to Houston last year (12 trips), to give you an idea of the costs; I have been once this year, and will go twice more, I believe. Blue Cross Blue Shield has covered every treatment so far -- it has to be close to $1,000,000.

The reason that a "medical oncologist" is important is that he knows the various new drugs on the market, what they are likely to do to the cancer and how the various treatments interact; I am not sure that urologists and RO's are at the same level. At my initial diagnosis, the cancer was out of the capsule and inoperable. After 8 months of Lupron, and three months of Zytiga, the cancer had shrunk substantially and my oncologist referred me to a urologist who removed the tumor and the prostate. Sixty days later, my first bone metastases appeared, and the oncologist started Xgeva and docetaxel. He referred me to a radiation oncologist to treat further the metastases after the chemo.

My initial PSA was 60; I am an all-core Gleason 9 with metastasis and lymph node involvement; I was given two years to live two years ago by a local doc; I am now staring down the barrel of a substantial remission. I have no cancer on scans (other than two tiny metastases that are probably gone now) and my PSA was .3 and headed down before the radiation. Nobody really believes it, and I am just starting to get my head around the fact that I might live. The only doctors I deal with frequently and directly are the oncologists; I couldn't pick the radiologist or the urologist out of a lineup.

I have had a lot of the treatments on the list:

Firmagon
Lupron
Casodex
Zytiga and Prednisone
Xgeva
Neulasta
Docetaxel
Prostatectomy
Image guideded radiation therapy
And I am in line for preventive Xiofigo -- very uncommon.

I am still upright. If anyone has any questions about any of these, I am happy to answer. They all make me very tired; very, very tired. After that the side effects are manageable, at least to me.

And finally, I have one more comment. When I had my prostatectomy, I was really concerned about sexual function. That quickly faded into the background, and I became very concerned about incontinence. I could not imagine walking around leaking wee-wee for a long period. Men I talked to who had incontinence problems agreed that the incontinence was multiples worse than the impotence.

My experience at MDA is that I have had zero problems with urinary issues related to my prostatectomy. My catheter was removed in five days, and I have not done anything. No diapers, no exercises, nothing. And the prostatic resection was substantial. Other guys in my "class" have had similar experiences. I say that to emphasize the importance of the experience in choosing one to do a prostatectomy (as I said, I didn't choose, my onc did). The surgeon who operated on me had done over 2000 laporoscopic procedures; he did three the day he did mine. Finding a medical center urologist with that kind of experience is absolutely critical.

This is a long post, and it is mostly about my good decisions. The worst decision I made was trying to go with the "friends and family" approach. Advanced prostate cancer is a strange animal and not many docs are experts in it. Your well-being and your life are at risk when you pick a friend of a friend who has less than adequate experience with it.

I am certainly happy to discuss any of this with anyone who has been newly diagnosed or otherwise. Info is in my profile.

I have thought about this for awhile, and thank you for bearing with me.

After a long three months of trying to make the best decision, using all the information I could find especially from all the threads here on HW, I am going with the HT/RT. The Casodex should be here Monday and will get the Lupron in a couple weeks. So I am off the fight the beast.
Thank you to all on the HW for the support and opinions which are essential for anyone having to make these tough decisions. I surely will have questions as this process continues. I will keep reading and posting.
Thanks again

Carl

Congrats on making what I know is a very tough decision. I still have my "decision" right in front of me and I doubt there is an hour of the day I don't ponder some aspect of the choices.

Semper Fi.
Walt