Just been Diagnosed with Prostate Cancer - Advanced Prostate...

Advanced Prostate Cancer

12,281 members14,861 posts

Just been Diagnosed with Prostate Cancer

Brent13
Brent13

I got not so good news yesterday, I have Prostate cancer and it has spread to bones too. Now I'm trying to find the best doctors, centers and options. I'm a bit overwhelmed. Any help anyone can give would be appreciated. I'm trying to get an appointment with Dr. Scher at Memorial Slone Kettering. Also researching MD Anderson and Mayo. Thanks for any help.

36 Replies

My husband’s primary oncologist is local in Dallas where we live, but we’ve been to MD Anderson and University if Chicago to see specific Dr’s. Highly recommend going to a large research hospital early on. We keep in touch with both in the event a good trial becomes available or we need further guidance. There is so much information and support on this site, and if you’re able to, I would suggest going to a local cancer support center and seeing what they have to offer.

Dr Scher is no longer taking patients, but Dr Kantoff or Dr Morris at MSK are excellent. My list of MOs at the forefront would also include Antonarakis at Johns Hopkins, Higano at Seattle Cancer Alliance, Sartor at Tulane, and Efstathiou at MD Anderson. There are many more excellent MOs that I could name. What city are you in?

Brent13
Brent13 in reply to Tall_Allen

Thank you, I'm in Nebraska but willing to travel. I will check out some of the docs you mentioned.

Brent13
Brent13 in reply to Brent13

I'm also trying to get an appointment at Mayo with Dr. Kwon.

ctarleton
ctarleton in reply to Brent13

FYI,

gucancer.com/about/practiti...

Charles

Brent13
Brent13 in reply to Tall_Allen

The reason I was trying to meet with Dr Scher is his aggressive approach using multiple modalities. My local is trying to go very by the book.

Tall_Allen
Tall_Allen in reply to Brent13

They are testing Lu-177-PSMA in Omaha.

Brent13
Brent13 in reply to Tall_Allen

Thanks I will research that.

Brent13
Brent13 in reply to Tall_Allen

Tall_Allen you are very knowledgeable, how are you up on all this valuable information?

Tall_Allen
Tall_Allen in reply to Brent13

Here's the clinical trial contact info. The Principal Investigator in Omaha is Luke Nordquist:

clinicaltrials.gov/ct2/show...

I just keep up.

Brent13
Brent13 in reply to Tall_Allen

Tall_Allen, I was wondering if you might be able to list out some good questions to ask Dr LaGrange in Omaha about a plan of attack. Any other testing? I hear about PET scans. What treatments? Surgery, Drugs? Radiation? I'm a bit overwhelmed. Thanks, Brent

Tall_Allen
Tall_Allen in reply to Brent13

Here's an article about treatment options and trials for men newly diagnosed with metastatic and hormone responsive PC.

pcnrv.blogspot.com/2017/06/...

The first decision is whether to add chemo (docetaxel) or Zytiga to your hormone therapy. It sounds like you have multiple mets, so early chemo may be your best first option. Since it takes 18 weeks to complete a cycle, you can start Zytiga afterwards. Effectiveness is much greater and side effects are much milder if used sooner rather than later.

Hidden
Hidden

Sorry to hear. There's quite a brotherhood here for info -- as well as on Healingwell.com / prostate cancer. I was diagnosed last year when PSA = 18. Then in a couple months it got to 60. Bone & lymph mets. Began with Casodex, then Lupron & Casodex last fall. Feb '18 I did six docetaxel treatments while remaining on Lupron + Casodex. Also did xGeva for bone (look into this for your bone mets!). Last week, with PSA = 0.60, I dropped Casodex and started Zytiga + prednisone. Goal is to get PSA = 0.10. Playing offense! Best of luck. Use the brotherhood for info and comfort, too. Steve

charlesmeyers1964
charlesmeyers1964 in reply to Hidden

hey dude been there done that. i've had prostrate cancer tor the past 10 yrs and now my psa has risen to 28. to me its great from what i have heard on this page and i just turned 72. now there is another treatment i just started. its goal is to boost ones immune system to the best one can get. it attacks the cellular parts of the prostrate cancer. read it and then talk to your doctors charlie

sorry forgot the name its called PROVENGE TREATMENT

Sorry to hear about the diagnosis, but you are in the right company (you can read my bio)

It’s an emotional roller coaster in the beginning, but once you get the treatment regiment figured out, you will calm down significantly.

I back you 100% for seeking opinions from more “aggressive” oncologists. I have dr. Scher, but as Allen mentioned he’s not taking any more patients. Not to say that his “practice” isn’t. I think dr Kantoff is doing more administrative stuff and not much clinical stuff if I’m not mistaken. But I have heard people sing praises of dr. Morris.

This is start of a very long journey for you.

I too am sorry to hear of your diagnosis. You have found a great forum, the only one I have found with men just like me.

I decided that my local MO can manage the chemotherapy that I have chosen as the first-line attack on my MPCa. I also have a second opinion MO at MD Anderson.

At this point I have finished Taxotere chemo and will be very aggressive in the next step, moving right into abiraterone. I am looking into clinical trials to add PARP inhibitors to the Zytiga.

Good luck!

Hi Brent, I was where you are now 2.5 years ago. I live in Australia, so I can't help with your question about Drs. but just thought I'd say hi. There is a lot of excellent support and advice here, you've found a good place. The only thing I can suggest is ask for a copy of all your records, blood test results, scan result, pathology reports etc, makes it much easier if you seek a second opinion, or switch doctors. Be your own advocate. Take the best medical advice you can find, but take charge of your treatment and do what feels right. Cheers.

Hey Brent, it's been four and a half years since I was in your position, you can click on my profile to see what I've done regarding treatment. Like others have posted, learn all you can, be your own advocate and get with an oncologist who specializes in prostate cancer treatment. Hang tough, there's lots of treatment options these days. Good luck!

Ed

Brent,

Very sorry to hear about the diagnosis but try not to panic as many of us on this site have been dealing with this beast for a number of years and the collective group has had experience with treatments not only in the US but globally. I go to the Mayo and see Dr. Eugene Kwon excellent oncologist specialized in prostate cancer. He's aggressive in his approach and listens to his patients.

Thank you all for your support. i'm kind of in a daze. My wife has been very strong. My main goal now as I mentioned is to find an aggressive doctor that can direct me on the best path as soon as possible. With my PSA at 350+, positive biopsies and bone lesions I feel like I need to get going on something as soon as possible. However, getting an appointment has been a rigorous process. Again, thanks and I appreciate any information you all can pass on. Brent

Sorry you have met the monster . I use Mosaic here in St. Joseph , mo. My doctor is top notch. He went aggressive on me when I was diagnosed stage 4 in August of 16. Chemo then Xtandi , while doing monthly Lupron and Xgeva shots. PSA is .005. Dr.AJ is what we call him. Fight the good Fight

If you can't get to see Dr. Scher, try Dr. Karen Autio, also at MSK. She's great!

Do your research (looks like you’re already started with that). Be aggressive. Be proactive. If you’re in NE your best choices may be in Omaha or Lincoln. The Mayo Clinic in Rochester, MN is a good option, and is highly regarded. Check out some of the You Tube videos by Dr. Eugene Kwon.

You said you are willing to travel, but keep in mind that you will likely be doing that a lot more traveling than you think. I live in central FL. My wife and I are both cancer patients at the Mayo Clinic in Jacksonville. It is a 280 mile round trip from our home. Between us in 2016-2017 we made 22 trips there and a 2 month stay for her issues. We have already been there 12 times in 2018. Moffitt Cancer Center in Tampa (180 Miles r/t) was an option, but didn’t get as good a “vibe” from them as we did from the Mayo. I also checked out MD Anderson, but the logistics were horrible, especially given the frequency we need to travel for cancer treatments.

Best wishes to you. I know this has been very difficult for you, but you are off to a good start, and this is a good form to bounce things off others who have already experienced what you are going through. We are not medical professionals, so double check the advice and info you get to make sure it is relevant to your specific needs.

Fitzbruce1
Fitzbruce1 in reply to Litlerny

I too live in the Orlando area. I was dx 8 weeks ago w metastic prostate cancer w many bone Mets w 10.6 PSA and 4\-3 Gleason. I went on Lupron, Zytiga n Predissone 7 weeks ago. I was very happy to get a .27 PSA yesterday!! I see Dr Landow at UF Cancer on Orange Av. I am going to start radiation on my hip n femur in 2 weeks.

You two have made a real commitment in driving to Jacksonville! Anything you want to share w me since I am a Nubie in this fight?

Litlerny
Litlerny in reply to Fitzbruce1

Hi, neighbor. I’m up in Leesburg, about 35 miles NW of Orlando. Welcome to the club no one wants to have to join. (But we’re all happy it’s here for us). 😎

I was diagnosed by a local urologist with Stage 4 PCa in 06/2015. At that time my PSA was only 4.65, Gleason 7 (4+3) with cancer in all 12 cores. A PET scan showed one tumor “hot spot” on the right inferior pubic ramus (bottom of the pelvic bone). I immdiately started searching for a medical oncologist. Checked all over and decided to go with the Mayo in Jax. I’ve been very happy with them. Back then neither Zytiga nor chemo was an option for oligometastatic patients. Started ADT in 06/15 and I have been on 6 month Lupron + daily bicalutamide since then. My PSA dropped to undetectable within 6 months, and my testosterone dropped to single digits, and both have remained there for over 3 years. I did a 6 cycle at 3 week intervals course of chemo with docetaxel from late Nov. last year thru mid-March this year. The chemo has shown very positive results in clinical trials in extending the time ADT works. Also, the lone pelvic bone tumor disappeared (interval resolution) on its own about 2 years ago. My MO and I consulted with a radition oncologist at the Mayo back then. She said the tumor was in a good location for successful radiation, but both of them wanted to wait a bit and see if it resolved on its own, which it did. I had a follow up scan done in July, 2018 and it’s still not showing up, and no new tumors...very good news all around. No telling how long I will continue to be so blessed, but I am really pleased with my treatment plan so far. My Mayo MO wants to hold off on Zytiga for now...may wait until I start to get a PSA rise when the ADT starts to fail (hopefully several years from now). I’m hoping by then there will be new drugs and other therapies available. The longer we live the more likely we are to live longer, right?

Anyway, you are off to a very good start at the UF Cancer Center. I’m guessing they are doing the radiation because you have multiple bone mets. I think it’s a good decision for you. But that’s just my humble non-medical feeling. Good luck with it, and keep me (and all of us here posted) on how it is doing for you.

In here you will find many opinions regarding complementary treatments including diet, exercise, and supplements. Several have gone totally vegan (a little extreme for me, but I do eat much healthier than I used to). Others totally cut out sugar in spite of some evidence showing that sugar does not feed the cancer and that your body converts everything you eat into glucose, and cite medical reports showing that it doesn’t matter what you eat once you Re metastatic. I cut out most sugars, but I did it because I have type 2 diabetes. I also take Metformin 500 mg t.i.d.) for the diabetes. Several studies have shown that it improves the efficacy and duration of the ADT drugs. Many are opposed to any supplements, others take a bunch of them. I take a few. Do they work? I have no idea, but I’d like to think they help.

Anyway, the point is, read all the information and advice everyone in here gives you and chart your own course. You are a unique individual and your cancer is unique to you. I look at it as we are all riding on the same train, but in different cars. Do a lot of your own research as issues arise. Don’t be afraid to discuss issues and questions you have with your MO.

Best wishes to you as you get started on your journey. 😎

i'm 375 from Seattle WA and they have a hugh building and specialist doctors there. i've been dealing with my prostrate cancer for the past 10 yrs and my psa is up to 28.i started with lupon/eliguard shots then had radiation and been on zytiga until the ability was hard to get. now they have a new program for me its called PROVENGE treatment and usually used for late cancer pts but the good news its for all it works better for psas not so high check with your oncologists.truthfully i have no confident with oncologist to me they are maintenance docs and that"s all.

to Brent13: The other day someone said he called Dr. Scher at MSKcc and hadn't received a response. In the meantime try to see my MO Dr. Michael Morris at MSKcc Kimmel center 68th street and First avenue in NYC. Phone: (646) 422-4469. Great Doctor and Great Guy. I don't know if he's taking on new patients.

Right now you are overwhelmed (like all of us were). Take a deep breath and take it slow, you have time. If you visit any doctors make sure you have someone else there with you to ask questions and to take notes.

Good Luck and Good Health.

j-o-h-n Thursday 09/13/2018 6:32 PM EDT

Brent13
Brent13 in reply to j-o-h-n

Thank you. I have had no response from Mayo or MSK in a week and it is disturbing to just wait and do nothing. Having no plan is the worst. I will give Dr. Morris a call right now.

Brent13
Brent13 in reply to j-o-h-n

I called and did get through to Dr Morris's office but they turned me back to central scheduling. So I'm waiting to hear from them. I did reiterate that I want to see Dr. Morris. Thanks, again

Looks like Dr Morris is not available till Nov. but Dr Kantoff possibly Oct 4th. I'll keep pushing. Just looking for a plan of attack. Thanks, everybody!

Well it looks like my first appointment will be at the Buffet Cancer Center part of Nebraska Medicine in Omaha with a Dr LaGrange. They collaborate with Mayo and can actually get me in this month. I don't know much, but I know doing nothing with a 350 PSA is not good.

to Brent13:

I'm Sorry to hear that you're getting the run-a-round. I know it's very frustrating but believe it or not you actually do have time to make the proper decision(s).

Good Luck and Good Health.

j-o-h-n Friday 09/14/2018 6:46 PM EDT

Reply

Duke university hospital is listed as one of the top ten hospitals and specializes in prostate cancer. In north carolina

I use Dr John Sarantopolous at Mays Cancer Center/MD Anderson/UT Health in San Antonio.

They have a great team, and he is a top researcher. He is extremely aggressive, and does not wait for the cancer to come to him, he plays constant offense.

I was Dx in March 16, PSA 658.

It has been as low as 1.59, then skyrocketed in 2 months from Xtandi reaction to 2680. Now we have it back down below 1000, bones show no progression since January scans.

Give him a call. It's worth the time.

I had a busy weekend meeting with a Radiologist and and Oncologist at the Buffet Cancer center. I was impressed with Dr Benjamin Taply the Oncologist, Harvard, John Hopkins trained. And in a short story, agreed to get 2nd shot of Firmagon and start Docetaxel on the 30th of this month

. I then met with Dr Luke Nordquist an Oncologist focused on immunology he trained under Dr Scher at Sloan Kettering at his private practice. He spent 2 hours with my wife and I and explained the historical, current and perceived future of treating and possibly curing advanced stage prostate cancer. We also spoke about the onsite research center that has more current trials going on that any other location including Mayo and Sloan. (I would guess has nothing to do with quality but the many less"hoops" to jump through outside of a teaching hospital setting). I have a PhD in Human Physiology and My wife a Doctorate in nursing and we still felt his every word had value and purpose. I was impressed enough with his expertise, general approach and willingness to collaborate with Dr Kwon at Mayo that we cancelled the Buffet Cancer Center appointment and started Taxotere Chemo that afternoon and will get a Lupron shot with next Chemo in 3 weeks. I feel Dr Norquist coupled with Dr Kwon will cover as many of the bases I know of at this point in the exploration expedition we all are forced into. I truly thank all of you that have commented on my questions in my posts because I would not be where I am today or have my current sense of calm without all you brothers out there. Brent

You may also like...