Advanced Prostate Cancer: Mayo Clinic

This all sounds wonderful but in the end will it make any difference in the outcome of your cancer? Did they recommend any departures from the treatment plan you are following now?

I find it interesting that their Urology department was taking precedence over the Oncology Department in treating advanced prostate cancer that had metastasized...Dr Kwon must be a Urologist and a powerful enough figure to have retained control of all prostate cancer patients...That was an excellent post, I enjoyed reading it..

I had a PSA of 0.01 going into the tests --- the usual scans at my local hospital were not detecting anything. Previously, the lung mets had resolved with ADT shots.

Now the PET-CHOLINE scans show new suspicious areas in the lungs that need to be watched. I had reported shortness of breath on my documents sent to Mayo. That was the purpose of the scans. Changes in these scans will also show whether or not the new ZYTIGA medication is resolving these lung mets or whether they are residual scarring from the resolution of past lung mets. If not, then changes in the scans will tell us when we might need to consider a new round of chemo treatments to work on lung mets, if they are increasing.

Dr. Kwon noted that my latest PSA test was showing 0.01, yet he feels that in some cases PSA is not always indicative of new activity --- and that I have a type of prostate cancer that might be rather tricky.

I also have a somewhat different case in that I have NEVER had any bone mets --- mine were all located in the lungs --- no bone involvement to date.

Also -- Dr. Kwon is willing to try DIFFERENT combinations of chemo that my local doctors here have never used or even considered. That's why I need his expertise added to my medical team.

It took me two years --- but finally deciding to go to Mayo was perhaps a long overdue trip to seek a "second opinion" --- I have been very connected with my local doctors, so it seemed like a big step to "branch out" and seek out some expertise at another medical facility --- that idea might be helpful to another reader --- we hear the "get a second opinion" mantra repeated so often --- but it took me two years to actually do so ---

That was the importance of my trip to Mayo.

Hope this clarifies !
Cyclone

Post Edited (ISU-CycloneFan) : 10/4/2015 11:09:41 AM (GMT-6)

Hi Allen ---

At diagnosis, two years ago, they did a full lung biopsy (wedge re-section)which proved that the original lung nodules were metastatic prostate cancer --- I was in the hospital for 3 days recovering from the lung biopsy surgery. I don't know if it was ever indicated to me which specific type of cancer. I just remember them using the term ADENOCARCINOMA on my medical documents.

I wonder if my new prescription of ZYTIGA can resolve lung mets, if this is a recurrence of those mets?

In July, my PSA doubled from about 0.20 to 0.45 in one month's time. After 20 days of ZYTIGA, the PSA dropped to 0.08, and last week it dropped to 0.01. Doesn't that show that the ZYTIGA is doing something important ? At least I hope so ...

My local oncologist feels that an early response to ZYTIGA can be indicative of a longer response to ZYTIGA ...

Dr. Kwon at Mayo believes in adding the component of scans and images to PSA tests and CTC tests to make his decisions and recommendations, to show whether there can be small pockets of cancer "lurking" --- my local doctors were simply relying on PSA tests for the most part ---

I hope ZYTIGA can resolve lung mets --- the choline tests showed some suspicious uptake in a couple of lung lymph nodes and a couple of lymph nodes near my aorta --- so, I guess I go on "watchful waiting" with the use of choline scans at Mayo Clinic ---

Yet my new PSA is only 0.01 ?!! I was thinking that was cause for a celebration after starting ZYTIGA --- Dr. Kwon thought one possibility is that the abnormalities noted on the choline scan might be from lung mets resolving themselves or scar tissue from past mets. That's why he wanted to set a baseline and then I will be re-tested again in 3 months to see if any changes emerge.

I sometimes feel that I might have medical problems forming in my lungs that the PSA perhaps does not indicate ...

I think that the recent PSA drop from 0.45 to 0.01 is a good sign of SOMETHING positive that the ZYTIGA must be doing for me --- in less than 2 months. I felt that it was a significant drop --- and ADT and chemo never got my PSA down to 0.01 --- but after we added ZYTIGA, it dropped to 0.01. I just hope that the ZYTIGA can clear up the lungs, and maybe it's in the process of doing that. A PSA drop from 0.45 to 0.01 in less than two months tells me ZYTIGA is doing something positive.

Cyclone

Post Edited (ISU-CycloneFan) : 10/4/2015 11:13:22 AM (GMT-6)

Yes, I agree that a rapid and complete response to Zytiga is certainly a great sign. There is so much we don't know - like why in some cases like yours, the hormone-responsive mets are all in the lungs and none in bones?

Thanks for these enlightening posts. One minor disagreement I have is with the statement "scans that are NOT available anywhere else in the country or in the world . . . which can detect traces of prostate cancer cells in your body sooner than any other known scan or imaging device elsewhere. " There are GA-68 scans, F-18 sodium scans, and nano-iron scans which can be better--it depends on the situation. For example, I have read (sorry, no link) that C-11 can see down to a 4 mm lymph node cancer, while nano-iron can see down to 2 mm. (I had the nano-iron at Radboud in the Netherlands.) So it is worth doing a little research based on one's particular situation.
Also, in response to those who ask what difference in treatment results, in my case the offending lymph nodes were in two locations and we tried radiation and a short course of ADT--too soon to know the results.

Cyclone
Thanks for the well done post. I'm glad that you have the Mayo on your team!
As noted in your note and in the replies below there are other top notch care facilities and doctors all around the world. That said, I feel blessed to have Mayo in my backyard. I don't know if I would be in the relative good shape I'm in if not for the aggressive treatments recommended by the Mayo team. Also, some of the treatments such as chemo and radiation were done outside the facility for my convenience. It's great to have the resource and know that you can follow through with the plan that works for you at your local oncologist or urologist office.
I am due for my visit in the next few weeks. I always seem to run into someone I know at Gonda 7. Maybe see you there!
Take care

Hi Cyclone,

Sorry i'm late - thanks a ton for the details about your visit! Your new PSA nadir under Zytiga is excellent news. And I keep my fingers crossed that the suspicious areas in your lungs are scars! And congrats that you made it to Dr. Kwon.

It seems to me that we are seeing a shift in the treatment of metastatic PCa - away from a sequence of palliative treatments that work for a while, then fail, just to be replaced by the next treatment, which after a while will fail as well - etc. In this scenario our hope as a patient is that science will continue to come up with new drugs before we run out of options.

A number of research papers and scientists such as Dr. Kwon suggest a different approach. Their view is that a more aggressive, multimodal treatment might in some cases be more efficient. We have seen that such combinations can have very significant benefits, just think of the combination of ADT & Taxotere chemo.

Kwon seems to go one step further, he is even saying that it is possible to treat a systemic disease (PCa with metastasis) with curative intent (here's one of his impressive presentations: https://www.youtube.com/watch?v=NkqizmvqJPo ). That is a very different approach, compared to the traditional wisdom that treats metastatic PCa with palliative intent.

Now, here are a number of questions (first a rather general one, followed by more organisational details):

- As you know I have a similar diagnosis like you (relatively young patient, diagnosed with aggressive metastatic PCa, treated with ADT and chemo, currently still hormone sensitive, with a PSA of 0.07). My doctors here recommend to continue ADT and are sceptical that more aggressive treatment options such as surgery or radiation might make sense. And they say once the cancer is metastatic, all they do is palliative, not curative.

Did you get the impression that Dr. Kwon looked at your cancer differently than your doctors at home? I know that he did not recommend any additional treatment for the time being. But I am wondering what he was saying about your longer-term outlook and treatment options - was that any different from what you had heard so far?

Here are some more detailed questions that might be interesting for those of us who would like to organise a visit at Mayo:

- How long did it take to get an appointment at the Mayo clinic once they had your initial records?

- You say "all my medical records were first sent to the oncology department"? Did they decide that internally or did you initially contact the oncology department yourself?

- When the oncology department told you that they would not change the treatment - was that ahead of your visit or when you were at the clinic? did you have a call with them?

- You write: "then I had my records sent to the UROLOGY department at Mayo Clinic" - again: did that happen prior to your visit? Did you interact directly with the oncology department or how was that organised?

- Was it difficult was it to get an appointment with Dr. Kwon? Did you tell them prior to your visit that you wanted to see Dr. Kwon or was that decided on the spot when you were in the clinic?

Thanks a lot for taking the time to answer & greetings from Europe!

Thanks for all the insightful replies !

First of all, I hope that someone seeks a "second opinion" quicker than I did --- I'm getting close to celebrating my third Christmas since being diagnosed. That seems like a milestone compared to where I started with my original diagnosis a couple of years ago.

I formed tight bonds with the doctors at my local hospital and have been very pleased with my care. Here was the breakthrough moment in my thinking, though ... a close friend of mine asked me, "Are you being LIMITED by your LOYALTIES to your current doctors ?" That phrase really resonated with me ... the truth of it was that I WAS being limited by my loyalties to my local doctors --- and this friend felt that it was important for me to go to Mayo Clinic for additional advice, a consultation, a SECOND OPINION ... and peace of mind. Why I didn't go sooner ... I don't know ... I believe that sometimes things have to be put into your life's path before you can follow the trail.

Madagascar has asked some excellent follow-up questions ... I'll do my best to answer as follows:

1. I made my first call to Mayo Clinic in July 2015. I told the telephone receptionist that I had prostate cancer and she just transferred me to ONCOLOGY. They asked that I have ALL my medical records sent to their department and wait for them to telephone me back. A few days later, the oncology department called me back and told me they didn't feel that they would add or change anything to my care plan. They did an assessment of my medical records, which I appreciated greatly. I thought that was the end of my story with contacting Mayo Clinic. Lesson Learned ... you CAN have your current medical records sent to Mayo Clinic and they WILL do an assessment and then telephone you back in a few days with a recommendation as to whether or not they feel that they can add something to your current medical care plan.

2. After that, in a ONE IN A MILLION chance conversation with one of my best friends, I casually mentioned that I had always heard tremendous things about Dr. Eugene KWON at Mayo Clinic. This friend was thunderstruck and told me that her relative worked directly with Dr. Kwon --- so my friend telephoned her relative and because of this connection, my records were FAXED over from oncology to urology at Mayo Clinic, which is Dr. Kwon's department. I felt very fortunate to have such a direct link to Dr. Kwon, without even realizing it the past two years --- just through a chance conversation with my good friend. I felt like that was a sign ... encouraging me to follow-up and go to Mayo Clinic.

3. My contact was made in July 2015 and my appointment with Dr. Kwon ended up being the first week of October 2015. A waiting period of three to four months would be typical, I believe. I realize my path to Dr. Kwon resulted from a special set of circumstances, for which I have a lot of gratitude. There is an amazing team of urologists and oncologists at Mayo Clinic. In the end, I learned that I would be best served in the urology department of the GONDA BUILDING at Mayo Clinic. Several of you have been there, I know. I just booked a hotel room right across the street from the GONDA BUILDING at Mayo Clinic and walked to my appointments and scans from the hotel. Lesson LEARNED: Convenience !

4. Dr. Kwon is known as a trailblazer in the field of prostate cancer. There are many online articles and You Tube videos about his work in prostate cancer, which are easy to find online. I realized on the day of my appointment that there were patients there from across the country and even from across the globe there to see him, as well as other urologists in the same department, all with sterling credentials.

5. I realize I will learn more at upcoming appointments with Dr. Kwon. We did form an immediate connection at this first appointment. I feel I will learn much more from him at future appointments. He wants to meet with me again in three months, after I do some additional tests and scans to compare to the ones we just took lately. He stated that he does not always follow the "conventional" protocol of ordering just six infusions of Taxotere treatments, which I had completed last year. He is willing to order additional infusions if needed. He also is willing to mix in other components to the chemotherapy "cocktail" based on the needs of the patient. My local doctors have never mentioned any deviation from the standard chemo protocol, so this was a very new possibility for my future. Dr. Kwon mentioned that he can order other mixtures of chemo from other facilities, even outside the Mayo Clinic system, and has done so. I had the impression that he believes in very aggressive treatments for those of us with advanced prostate cancer. I have the impression he is willing to take some risks for those of us with advanced or hard-to-treat cases. I think I need that right now --- and I have some close friends in my same boat that are seeking that, as well. We're all about 50 years old, give or take.

6. I was diagnosed in my late 40s and I am nicknamed "the rare bird" when I visit my local doctors. All the rest of their prostate cancer patients are much older than I am. When I visited with Dr. Kwon, he stated that he sees about 200 patients that are in my age range with similar statistics, so he has that range of experience with them already. Two hundred patients about like me ?!! That seemed like a significant factor for me to consider. Those of us diagnosed at a younger age often have tricky forms of prostate cancer. I think I need him on my team, going forward.

7. Dr. Kwon telephoned my local oncologist while I was sitting there with him at Mayo Clinic. He reached out to him in a conference call in my presence and formed a partnership with my usual oncologist right on the spot. That impressed me --- they are going to work TOGETHER on my case. I felt very fortunate in that moment and that "partnership" occurred right in front of my eyes.

8. I told Dr. Kwon I had done the six cycles of Taxotere chemotherapy last year, following the released of the CHAARTED study. He told me that he had used Taxotere immediately for advanced cases of prostate cancer, going back 10 years, way before the release of the CHAARTED study. Again, I had the impression that he is a trailblazer, an innovator, perhaps a bit of a maverick in his approach to advanced prostate cancer. He seems to go beyond the "textbook" --- this is my impression from our first consultation together.

9. Dr. Kwon believes in using scans and images plus lab work numbers (such as PSA) to make his treatment decisions. My local doctors typically just look at PSA to make most of their decisions. For example, I started ZYTIGA just a couple of months ago and that decision was solely based on a PSA score spike, I realize in retrospect. My local doctors didn't order any scans to pinpoint where new trouble spots might be emerging in my case.

10. Dr. Kwon DID state that even though I am an advanced cancer patient, he would PERHAPS be willing at some point, to have my prostate removed, if it becomes warranted. It was not a promise, just a possibility. My local doctors have stated that they would NEVER even consider that approach, no matter what. Dr. Kwon said, "I can have your prostate taken out with a golf club, without any problem, if that's what we need to do down the road." He said that keeping my prostate intact for the time being might actually be beneficial, saying that there might be some reasons to keep the prostate intact for some future treatment options that he might consider. We didn't have time to pursue that avenue of conversation right then. He did state the detailed MRI of the prostate that he ordered while I was at Mayo Clinic showed that my prostate was GREATLY reduced in size now, from all the ADT shots and my past chemo treatments, and so forth. He was focusing his attention more on the PET-CHOLINE scans, to assess my lung lesions from past and present.

10. One more thing to add --- I already have an online medical account with Mayo Clinic. My lab results were posted within a very short time and the consultation notes from Dr. Kwon were also posted very quickly.

The main point of this thread has been --- to strongly consider a second opinion --- and to seek the expertise afforded by some of the wonderful major medical facilities we have scattered around the country. I learned a great lesson from the gentleman from the country of CYPRESS who sat next to me in the waiting room ... and he stated to me, "I have traveled 6,000 miles from my home country, because of the level of medical expertise you have right here in your home country."

That statement made a huge impact on me --- worthy of sharing with those of you following this thread. I wish the gentleman from Cypress knew that his wisdom is now being shared with others !

Continue to reach out --- do your research --- become your own advocate --- seek broader horizons if you need to, as I felt I needed to do for my particular case --- and keep facing forward.

Stay strong in the battle, my friends,
Cyclone

Post Edited (ISU-CycloneFan) : 10/6/2015 6:54:02 PM (GMT-6)

We also go to Mayo and they are fantastic. Also there are free places to stay or thru the ACS you can get a greatly discounted room at Extended Stay America which has a kitchen in your room. Ours was $12 per night for 7 weeks.

Dear CADguy,

I always follow your posts very closely and I always appreciate and value your updates.

I'm very thankful that your PROVENGE treatments went well for you. Congratulations on staying the course through the treatments and I hope they work well for you. Keep us all posted.

If you are going to start ZYTIGA like I did lately, keep us all posted on your results.

Also --- since this thread is about experiences with Mayo Clinic, please let us know how your visit with Dr. Eugene KWON goes at Mayo Clinic --- he was a vital part of my first trip to Mayo Clinic this past week and the plan is for me to consult with him again in three months.

I feel that I can continue to learn more and more from him, with continued visits. It takes a while to build history and rapport with one's doctor, but I honestly felt a tremendous connection with Dr. Kwon after my first consultation with him at Mayo Clinic.

Thanks for keeping in touch with all of us, CADguy !

Sent with my best to you, going forward,
Cyclone

Cyclone
Thank you for your post and all the details in it! Wish I had more time to repy, maybe later.I also have PCa and try to do research into where my treatment should be focused in the future. You list many factors to consider, I am glad to see your taking charge of treatment and the cherish the advice you have given us. We have many concerns and I feel I am getting great care, but sometimes think about going outside my familiar zone with the Onc. or seeking additional second opinions.(as I already left my original Urologist in the dust!) Keep the posts coming, I will be following you. Just as I try to follow our resident Info specialist Mr. Allen , just want to add that You have already been affected by this new path, if nothing other that the therapy of optimistic, and hopeful outlook that I read in your post. To me, this is also an essential part of treatment that my- by the book friends -someties overlook.I have heard that those with positive, optimistic outlook do somewhat better, I cant sight any official studies for you or anyone else, I just know in my "knower". As always, keep the faith.
Dan in Sunny So. Cal

Cyclone
Mayo does have c choline but Sand Lake Imaging in Orlando has equally good scanning technology which found suspicious pelvic lymph nodes which I am now treating with imrt at Dattoli Cancer Center in Sarasota. Your point regarding seeking out the best facilities and doctors is well taken.
Bob