In response to the post I wrote about Choline C-11 on December 11, 2013 Choline C-11 A Second Shot To Halt the Cancer After Primary Treatment Failure one of our group members contact me and shared that he was scheduled to have a similar scan. I asked if he would be willing to share his experience. The following is his discussion:
Greetings to my brothers and sisters,
My name is Brian and, like most of you, I have prostate cancer. On December 26th, I read Joel’s daily blog on Choline C-11 PET Scan. I thought the timing with that post was very interesting because about 10 days before I’d had a similar PET using C-11 Acetate at the Arizona Molecular Imaging Center in Phoenix, AZ. This is a slightly different isotope which is not FDA approved. But, is part of an FDA approved clinical trial being done at the clinic. After reading Joel’s post I sent him and email and he asked if I’d be willing to write a guest post regarding my experience and the results. So here I am. I hope this helps someone.
In early December I received a phone message from Dr. Lindberg, my oncologist, whom I’ve been seeing for about 8 years. He’d been thinking about my case and thought there may be an opportunity for me in my treatment by getting a PET Scan done at the Mayo Clinic (Choline C-11) or at an imaging center in Phoenix using the C-11 Acetate. I called him back.
Dr. Lindberg explained the C-11 isotope was proving to be more sensitive and effective at locating prostate cancer recurrence. If my recurrence could be located there may be an opportunity to use Cyber Knife (a form of focal radiation) or possibly surgery to eradicate the cancer. He said the Mayo Clinic isotope was FDA approved and my insurance may cover the cost of the test. However, the C-11 being used at the Phoenix center was not and the test fee was $3000.00 plus travel and accommodations. I told Dr. Lindberg I’d do some research and give the test some thought and let him know my decision.
Like many of you, I’ve been battling a long time. I was diagnosed 11 years ago at the age of 44, way to young for this disease. I’ve pretty much thrown everything at it but the kitchen sink (brief history below) and it still keeps coming back. A bone scan and MRI done last May/June were negative. Obviously, it’s somewhere but the technology, up until recently, has not yet been able to identify it’s location or size. A chance to to locate recurrence. This seemed a no-brainer to me. I did a little research and made a decision in about 15 minutes. Since I live in Northern New Mexico, I decided the Phoenix clinic would be the way to go for me. Even with the out of pocket expense. I called Dr. Lindberg back and said “let’s do it”.
The clinic in Phoenix is the Arizona Molecular Imaging Center – and my experience was outstanding. I called the clinic to get further information and discuss setting up an appointment. Since the use of this isotope is currently in a clinical trial, I dealt with the trial coordinator Elisa Blackwell. Elisa explained the C-11 scans were done only on Wednesdays and Thursdays and there was a cancellation for the following Wednesday. Otherwise, I’d have to wait until January. With my mind already made up, I couldn’t stand waiting until January so I made my appointment for 9 AM the next Wednesday and began the process – history, records, etc. You all know the drill.
Albuquerque to Phoenix is about a 1 hour flight and my original thought was to fly in early, take the test and fly home in the afternoon. Elisa said many patients do that but also explained there is set amount of isotope delivered each Wednesday and Thursday morning. If a scheduled patient cannot make their appointment (flight delay, etc) there isn’t enough time to schedule another and the isotope is wasted. Understanding what Elisa said, and knowing I’d be a wreck the following Wednesday if there were flight delays, I chose to fly in Tuesday evening. For those of you thinking about getting this test, this is a consideration. And I’m sure Elisa will tell you the same thing she told me. There are some other interesting pre-test requirements. No strenuous exercise for 72 hours prior. No extended walking on the day of the test and nothing but plain water after 6:30 AM. The plain water restriction was tough for me. That means no coffee!
The clinic is about 2.5 miles from Sky Harbor Airport and there are a number of hotels very close by. Elisa will send you a list of those hotels that provide discounts when mentioning the clinic. In addition, the hotels are close enough that their shuttle will take you to the clinic. From a taxi perspective, it’s about a $12/13 taxi fare from the airport to the clinic.
The morning of the test I arrive promptly and to disappointing news. The lab that makes the isotope (which is right next door to the center) had a breakdown with their QA machine that tests the batches of isotope. So the isotope batch could not be logged as tested and safe and the scan could not be done that day. Elisa said the company was working on the machine and they could probably do the test the next day. She also offered to put me at the front of the appointments. But ultimately, there were no guarantees. My decision was to stay another night and try again the next day.
Deciding to stay gave me the chance to get the preliminary details out of the way – finalize my history/paperwork, etc. It was also an opportunity to meet with Dr. Fabio Almeida, the center director, trial director and ultimately, the doctor who’d be reading my scan and discussing the results with me when completed. Dr. Almeida was personable, informative. He said he’d spoken with the company making the isotope and he had a very good sense the testing equipment would be fixed and the isotope ready for my scan the next day. My meeting with Dr. Almeida left me feeling confident the test could be done and, most importantly, that I’d made the right decision for me in going through with the test. More on Dr. Almeida later on…
Thursday morning I arrive. No bad news and it looks to be a go. The imaging center is small. A couple prep rooms, the imaging room, reception area. Not at all like being at the hospital. I was brought to one of the prep-rooms where I changed into a gown, had an IV started, vitals, a quick meeting with Dr. Almeida for last minute questions and then a short wait for my turn. The scan lasted about 25 minutes. Lay on the bed, inject the C-11, arms above your head, breath normally, try not to move and enjoy the ride. Not being an MRI, I enjoyed the relative quite of the machine. When the scan was completed, I went back to my prep room, changed waited while Dr. Almeida reviewed the scan.
The wait was short. Dr. Almeida came in to the prep room and we then went to his office filled with large computer screens with some very pretty pictures of yours truly. He started by telling me they did find a small spot about 1 cm x 1.5 cm in size. I guess that equates to about the size of a pea. The recurrence was localized to the prostatic bed but (always has to be a BUT) the recurrence was in a challenging spot.
We spent some time reviewing the entire scan and it was pretty amazing. Essentially, we went from top to bottom looking at various aspects of the scan, tissue, organs bones, the sutures from when I had my prostatectomy, etc., all the way down to… “the recurrence”. The recurrence was at the anastomosis from my prostatectomy. What this means is when they remove your prostate, they cut your urethra a little above the prostate and a little below. After the prostate is removed, the two ends are put back together. It was at this spot recurrence was identified. Obviously, they didn’t cut far enough either above or below the prostate and some cancer was left behind. And being the re-connection point of my urethra, you can see why it’s challenging.
Dr. Almeida took all the time I needed to discuss the scan, the results and what this all meant. He also took time to talk to me about perspective. My recurrence was located and is now a known. It is a localized recurrence although in a challenging spot it could be managed successfully for possibly the next 10 to 20 years. The results also gave me information I was looking for. The next step was a visit with my oncologist Dr. Lindberg on January 2 – last Thursday.
Between the scan and my next visit with Dr. Lindberg, he and Dr. Almeida had a nice long talk about the results so everybody was ready to go. Joining me for my visit was my wife Stacey who is a CNFP that has worked in urology for close to 30 years. First at Jefferson University Hospital in Philadelphia and now with the urology practice with St. Vincent’s hospital here in Santa Fe. Stacey knows a lot of stuff (highly technical term – stuff) and a lot of people. And she understands the difficulty in treating the recurrence at the anastomosis.
In the end the game plan came to the following,
1) Get another pelvic MRI
2) Set up an appointment with the radiation oncologist who did my prior salvage radiation to discuss the results and options. I’ve had radiation twice – 1st time was to the prostatic bed (2005), the second to lymph nodes when cancer was found after I had a combidex scan in Nijmegen Netherlands in 2008.
3) Investigate the possibility of a visit to Memorial Sloan Kettering due to their work in salvage prostatectomies.
4) Investigate the Mayo Clinic and Dr. Curtis (Las Vegas, NV) for information/consult on Cyber Knife
5) Last, but not least, my wife (remember I told you she knows people) will be in contact with a prior colleague at Jefferson in Philly who is a oncologic urologic surgeon (boy is that a mouthful)
Get all this done and have another visit with Dr. Lindberg in 3 weeks.
I don’t know where this is going to go. But I do know what I have now is a plan, a direction. For the moment at least, I’m not floundering about waiting. For me, that is an important aspect in the continuation of my battle.
Arizona Molecular Imaging
4540 E. Cotton Gin Loop, Suite 450
Phoenix, AZ 85040
Dr. Almeida –
Elisa Blackwell – research coordinator – she will get you set up and provide all needed information
Carlos or Kay – radiology techs. One or the other will get your history, hook you up with IV, inject the C-11 and take your scan
Yeni – will take your money
My experience with the center was outstanding and I would not hesitate to recommend them. Kind, professional, caring and willing to take the time needed to insure all your questions are answered. For anyone out there who has other questions, please email me at email@example.com
Now for the promised history:
December 2002 – PSA 2.8 Biopsy Gleason 3+3
Prostatectomy Feb 2003 Final Biopsy 3+4, encapsulated, negative margins
PSA becomes detectable 11/2004
11/1/2005 to 12/29/2005 IMRT Prostatic Bed
12/1/2005 begin Triple Hormone Blockage (ADT)- Lupron, Casodex, Avodart
2/2006 PSA undetectable
9/1/2006 Stop ADT but continue Avodart- PSA still undetectable
2/11/2008 – PSA detectable at .407
7/15/2008 back on ADT with PSA of 1.9
September 2008 – off to Nijmegen Netherlands for Combidex scan – results cancer in 5-6 lymph nodes
Back to radiation – 10/15/2008 to 11/23/2008 IMRT to lymph nodes with assistance of data from Combidex
February 2009 – Dr. Lindberg suggest the possibility of cure – want to do some chemo? I say yes.
Taxatere 2/23/2009 to 6/15/2009 – chemo sucks
At assay of < .008 PSA undetectable May 2009 Continue ADT through 9/1/2009 PSA remains undetectable through 1/12/2010 - .03 1/20/2011 PSA at 1.24 Start ADT - this time we try Firmagon instead of Lupron Stayed on Firmagon until August 2011. Although PSA was regularly declining, I did not become castrate. August 2011, PSA at .31 switched back to Lupron Castrate levels reached soon after PSA undetectable again 1//27/2012 ADT stopped 9/21/2012 with undetectable PSA until 1/21/2013- at .024 Bone scan and Pelvic MRI May/June 2013 - negative Provenge July/August 2013 - don't ask me how this was covered by insurance because I'm still hormone refractory. But they did. 12/23/2013 PSA 2.5 but there is a location and we have a target
Joel’s Take Home Message
Brian has managed to identify and associate himself with a doctor that doesn’t forget his patients when they are not together. His doctor is extraordinary and I believe that Brian has taken the time to nurture the relationship so that he thought about alternatives. It is through this relationship that Brian has opened the possibility of handing this disease, advanced prostate cancer, another blow.
Brian and his doctor have considered all the possibilities, both FDA approved and not approved. They measured the risks and potential rewards to make a decision that could lead to better care and possibility a longer life for Brian.
When faced with a recurrence all of us should consider a scan using one of the newly developed contrasts. Being able to visualize the cancer allows us to mount a targeted attack on the tumor. At this stage this targeted attack is the best shot we have.
I would like to extend my wishes to Brian that whatever he chooses for a “next step’ that it be successful. I am asking Brian to continue to update us on his decision making process and the results. I also wish to extend an invitation to other people who might want to share their story so that we all can learn from each other.
Joel T.Nowak, M.A., M.S.W.
DEAR DR. NOWAK:
MAAY THE LORD BLESS YOU, FOR YOUR GRAT SERVICE TO MANKIND, YOU HAVE PUT IN EFFECT; you will love your neighbor like yourself.
I read the c-11 cloline, paper and the results, I have 9 years battling a recurrence, I have had rp, radiotherapy, casodex, cyclopprosphamide and prenidsona, and later zytiga, that raised my psa fron 2.10 to 11.03.
I wll like the e-mail of the mayo clinic that DOES THIS PET, C11, AND Any other information so my oncologist. dra. nancy alam can join me there and see wht we can do.information to wehom to canotact abnd if possible to set any tipe of preliminary APPOINTMENT.
I AM FROM THE DOMINICAN REPUBLIC.
very truly tours.
After radiation, my cancer has come back. Can you please tell me how many centers perform the Choline C11 and C11 Acetate pet scan.
Thanking you for your kindness
I am aware of two centers, the Mayo Clinic in Mn and there is also a center in Arizona. Perhaps someone else can give us the specifics of the Arizona site.
Did I miss it? Cost?
I don’t know if I can get my insurance to cover the Arizona scan (not FDA-approved) over the Rochester version.
Did you pay out-of-pocket? Any idea what the cost would be?
Sorry for the delay i answering your question, I have been in patient treating another cancer and only now I am able to start things going again. In answer to your question I have found the following- I am not sure what has happened to AZ imaging, their phone numbers have changed and the new numbers are nt functioning. Their WEB presence has also ended. I will continue to follow up and if I find any information I will let you know. – Joel