In January 2012, my wife and I had left Boston to spend a few months in sunny Florida. We had just passed Orlando when my cell phone rang. It was my primary care physician calling to tell me she was concerned that my PSA was elevated to 6, which showed that I did have a problem with my prostate.
This is where it all started.
I settled into sunny Florida and started searching online to become better educated about the prostate. Prior to the PSA test, I had none of the telltale signs of a prostate issue. My primary care doctor advised me to wait until I returned to Boston in the spring and then test my PSA again.
While we were in Florida, I spoke with a friend of mine, who I knew was knowledgeable in this area. I asked her who I should contact if I needed a specialist. She said the only person to see is Dr. Philip Kantoff at Dana-Farber.
When I had another PSA test in April, the level had not changed much. My doctor referred me to a urologist. After the initial consult, he performed a biopsy. A few days later the biopsy results came back, with not very good Gleason scores. By this time I had a better understanding of the Prostate, the tests and some of the procedures. I knew that Gleason scores are the standard measure of prostate cancer’s aggressiveness.
My urologist suggested immediate surgery, then some radiation follow-up if needed. My wife and I were not comfortable with this course of action because we had not yet seen an oncologist. We made an appointment with Dr. Kantoff, and had the biopsy sent to Dana-Farber, in advance of our appointment.
Our first full day at Dana-Farber was busy. We were treated like royalty from the moment we arrived. It was clear to us that this was standard operating procedure. No matter who the patient was, they were treated with respect.
We met with Dr. Kantoff, who was concerned about the biopsy test results. He immediately prescribed a battery of tests, including an MRI, a bone scan, more blood tests, and I also volunteered blood samples to be used in research studies. I was followed carefully throughout the test process which took a couple of days. He spent considerable time with us, answering every question, repeating anything we needed to hear. I didn’t know then how much I’d grow to like and respect Dr. Kantoff.
After many emails and phone calls with Dr. Kantoff, I finally decided to do the standard treatment of hormones and radiation. I began taking Casodex pills (hormone), July 1st and a short time later started on the Lupron shot. In September, 2012 , I began radiation therapy under the direction of Dr. Paul Nguyen. After 48 early morning trips for my 15 minutes under the radiation therapy machine, my treatments were finished with no complications. All during the treatments the staff at Dana-Farber and Brigham and Women’s Hospital were outstanding. This made the unknown much easier to cope with.
Along the way, I joined the fundraising efforts of Movember, designed to raise awareness and money, for prostate cancer research and testicular cancer initiatives. Together with the other members of the Dana-Farber, we formed the BellissiMo team, which was Movember’s top academic institution in the USA. Movember has raised more than $300 million worldwide.
Recently, I had new blood tests, which showed my PSA had dropped to 0.01. If it hadn’t been for the expertise of the people at the Dana-Farber/Brigham and Women’s Cancer Center, especially Dr. Kantoff and Dr. Nguyen, and their efforts to make my visits a welcome one, I do not know where I would be today.
Leonard Ansin is a software developer and prostate cancer survivor. He lives with his wife Jane in the Boston area.
Leonard-Thanks for sharing your story. I had a similar experience but, in less than a year, my PSA went from 2.8 to 24.7 and the cancer got outside my prostate gland and into my lymph system. I went through a nearly identical protocol to yours and my PSA’s were 0.11 last July and again in October. They are on the rise again and I am back on Bicalutimide and have never stopped the Lupron injections since August of 2011.I am really in a bit of a quandary and to what to do next if a 90-day dose of Bicalutimide doesn’t stop the PSA elevation.Thanks again for sharing your story.Stay well,Peter
Hi Peter:
Thank you for sharing your situation with us. All I can say, is a friend of mine, was similar to you and finally he did get things back to normal. Takes patience and continuous communication with your Dr. Best regards and good luck. Please keep us posted on your progress.
Leonard- good blog. Obviously I am in a different department but share your opinion of Dana Farber. I believe this attitude of respect, confidence, and caring that flows thru the building from Parking Attendants to Physicians is what makes Dana Farber unique. There are “Brainiacs” all around the Country, but not the “bench to bedside” and “we all coordinate together” attitude. Another plus is so many services provided under one roof, people I have met with my disease must travel to several places to complete testing.
Happy Trails ahead for you. Sue
Sue:
We are so lucky to have the Dana-Farber in our back yard. They are the best.
I did meet someone during my treatment, who lives in Bermuda. He is being treated by a Dana doctor in Bermuda, but did his radiation here at the Brigham. We met as strangers and have now become good friends and hope to continue that for always.
Best regards
Our story is almost identical. In a years time my husband’s PSA went from 2.9 to 6.0 so his primary care physician sent him to a urologist locally for a biopsy. This doctor wanted to do surgery almost immediately, but we decided to get a second opinion. Thanks to our eldest daughter who researched his tests results further, and knowing ”someone who knew of someone” that could help us, we were able to get an appointment within three weeks with an oncologist who just happened to be the Chief of the Genitourinary Radiation Oncology Department, Dr. Anthony D’Amico. Dr. D’Amico immediately prescribed a battery of tests, including MRIs, a bone scan, more blood tests, and my husband also volunteered blood samples to be used in research studies. My husband chose to be part of a clinical trial for prostate cancer under his direction along with Dr. Aymen Elfiky, his chemo oncologist. (He took hormone pills (casodex), Lupron shots, radiation treatments and chemo treatments.) We did meet Dr. Kantoff at a symposium a month after my husband finished all his treatments in August of 2010 in Newton, MA, that was ran by Dr. D’Amico. We feel that we are truly blessed that he was treated at Dana-Farber/Brigham for his cancer. And end of August of this year he will be three years cancer free!!!
Helene:
Wow what a great story and wonderful results.
I just finished speaking with a friend, younger than myself, who has the same symptoms as your husband as well as myself.
His doctor recommended immediate surgery. (I guess this is standard). They are now are about to start with a doctor at the Dana!
Anyway, the 2nd opinion was the right path. Thank you Dana-Farber.
Best regards
My husband was diagnosed with multiple myeloma exactly a year ago, just before I was to retire from The Advent School. It was a fluke that it was found so early, because he didn’t have any symptoms. His protein levels were sky high, and several parents from school suggested that we go see Dr. Noopour Raje at MGH, for a second opinion. Dr. Raje, who is also a researcher at Dana-Farber, spent 2 hours with us and had a totally different course of action from what we’d learned from the first doc we’d seen. We felt optimistic, and Bill put himself in her hands. We’d planned a trip to France for the winter, and although we postponed for a of couple of months in order to accommodate this treatment plan, Bill was in remission by late November. Encouraged to take our 3 month trip, we departed with our chocolate lab in tow, feeling gleeful.
Multiple myeloma is not curable, but with the research that is happening at places like Dana-Farber and MGH, we know we are most fortunate. Every visit Bill also “gets the royal treatment,” and we are oh so grateful for Dr. Raje, the parents who sent us to her, and her NP, Jill Burke.
Lenny, thank you for sharing your blog post. It is an inspiring story and very encouraging to know that the Dana/Brigham people were able to help you as well as so many others who suffer from various forms of cancer. I also found Dana Farber to be wonderful throughout Lewis’s illness. Unfortunately, his outcome was not so good, but we both appreciated the excellent care of his doctors, particularly Ken Anderson. We are indeed fortunate to have this excellent facility right here in Boston!
Hi Bonnie: Thank you so much for sharing your comments. We all miss Lewis very much.
Maybe we’ll see you in NH
Len – thank you for sharing this post. It is good to know info.
So glad you are doing well!
Ruth
Hi Ruth:
Thank you for your thoughts.
I hope all is well.
Best Regards
Leonard
Hi Nancy:Wow what a great story and wonderful results. We are so lucky to have the Dana-Farber in our back yard. Best wishes for continued good health. Leonard
Hi Lenny,
Thanks for sharing your story. I didn’t know. I’m glad you are doing well. My thoughts are with you and your family.
All the best,
greg
Hi Greg:
Thank you for your thoughts.
I hope all is well.
Talk to you soon.
Best Regards
Leonard
Thanks, Len, for the information. I have made note of Dr. Kantoff’s name for future reference even though we split our time between Florida and western Massachusetts.
Dana Farber is terrific: I have a friend in Florida who returns to Boston for treatments simply because she felt that Dana Farber is the best!
I hope that things continue to go well for you.
Eustis Walcott (Milton ’56)
Hi Eustis:
Thank you for your sharing your thoughts.
If your friend would like to post to this blog, please send her the link.
I hope all is well.
Sorry to learn about Henry Robinson (our class 56)
Best Regards
Leonard (Milton ’56)
leonard,
My 2012 year went exactly as yours did. My GP in Jan. said my PSA was up to 7. After returning from Fla in April I went to a urologist at the Brigham who sent me to see Dr. D’Amico at Dana Farber. As they are connected with a facility in Dartmouth MA I had all my treatments there, radiation with the Lupron and Casodex. My PSA ant testosterone are “undetectable”. BTW sally and I moved to Little Compton RI while all this was going on, In a new house designed by Vcevy Strek, we love it! So Happy we have done so well with the great Drs. at the Brigham and Dana Farber!!!!
Jim G.
Hi Jim:
Wow!
What a great story and wonderful results.
Sounds exactly like my story.
We are so lucky to have the Dana-Farber and Brigham in our back yard. Best wishes for continued good health.
Leonard (Milton ’56)