YANA - YOU ARE NOT ALONE NOW

PROSTATE CANCER SUPPORT SITE

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Rick Callahan lives in Pennsylvania, USA. He was 52 when he was diagnosed on September 22, 2009. His initial PSA was 4.2 ng/ml, his Gleason Score was 6 (3+3) and he was staged T1c. He is undecided as to his choice of treatment. Here is his story.

I live in Camp Hill PA and would like to hear from others around my age especially with a similar Gleason score, PSA, and percent of cancer found and what they have chosen or are considering for treatment. I would also like to hear from others who have had the eight weeks of radiation IMRT/IGRT and others who have had surgery and how both groups are currently doing. Also would like to hear reasons for choosing their treatment and long term side effects.

Back in September of 2009, I was diagnosed with PC following a Prostate Biopsy due to a PSA of 4.2. Out of a 12 needle biopsy, only 1 sample was found to be less than 10% cancer. My Gleason score is 6(3+3) and stage is T1. I am 52 and have no symptoms of PC and no ED problems. I have had several DREs and all doctors have said they cannot feel any lumps or bumps that would indicate a problem. Being symptom free makes it extremely difficult to choose a treatment that may result in some kind of complication. As a result, I am currently undecided as to what treatment I should have.

I have been to numerous doctors trying to get a consensus on what the best treatment would be for me. My local urologist, Dr. Kachel, recommended aggressive treatment and strongly recommended surgery for removal. However he did say IMRT/IGRT radiation is another option. I had a local consultation with a surgeon, Dr. Moyer and with a radiologist, Dr. Newton, specializing in the treatment of PC. Dr. Moyer highly recommended surgery and indicated there are a lot of options in dealing with complications. Dr. Newton of course strongly recommended radiation and said there are minimal complications with radiation. They implant 3 non radioactive markers in the prostate to precisely guide the radiation beams sparing as much normal tissue as possible. I also had a consultation with two surgeons at Johns Hopkins in Baltimore MD. The first surgeon, Dr. Jarow, recommended radiation to my surprise. He said radiation will cure this cancer. When I question if it didn't, he simply said don't worry it will. The second surgeon, Dr. Pavlovich, strongly recommended surgery since I am 52. He did bring up the subject of over treatment of PC. When ask what he meant, he said if after taking the prostate out it is found to contain less than 1% cancer, then this would be over treatment. He suggested I wait 6 months from my first biopsy and have another one done by him. For now this is what I will do and then hopefully reach a decision on what treatment is best in my situation depending on results of second biopsy.

After researching the internet and consulting with several doctors, I am still consumed with trying to figure out what the best treatment for me would be.

I have concluded that with surgery all the risks are up front. These risks may include permanent incontinence, ED, and other complications with surgery in general, such as blood clots. I have been told that problems with ED generally improve over time if nerve sparing surgery is performed. With the 8 weeks of radiation, I have been told by other doctors aside from the radiologist that the risks are more long term involving eventual ED problems due to damage of nerve tissue. The radiologist indicated he has not seen any permanent complications from radiation treatments. From what I learned on the internet, there is not a lot of data for the current targeted radiation such as IMRT and IGRT which minimize the exposure to healthy tissue. I think maybe the other doctors more familiar with surgery than radiation are not as familiar with the targeted radiation techniques and more familiar with the consequences of older radiation techniques.

My life has been turned upside down since diagnosis. I have now lost about 15 pounds worrying about this. The holidays have been a needed distraction for me to get my mind off of PC. I have two sons, the one has been very supportive but is too young to fully understand what I am going through. The other is a teenager who could care less and is very unsupportive. I am extremely overwhelmed by PC and constantly think about it every day to the point I can't even enjoy my life anymore.

Sincerely,
Rick C.

 

UPDATED

March 2010

 

 

I had my second biopsy done at Johns Hopkins. Second biopsy found 2 out of the 12 cores samples to be cancerous. 1 had 10% and 1 had 60%.

The JH surgeon now ask me to consider a focal freeze of only the cancerous portions of the prostate. He indicated this would eliminate any complications from removal and also preserve my options if cancer should return. He said initially cryosurgery was disasterous as the entire prostate was frozen resulting in nerve damage. They can now better map the cancer within the prostate and concentrate the freeze on the cancer. He compared this to a lumpectomy. I am to speak with the surgeon this week to discuss this procedure. Has anyone heard of this focal freeze and has anyone had it done and what are the results? [See the Cryotherapy index]

Another option I am considering is Proton Beam Therapy.[See the Proton Beam index] They just opened up a new center in Philadelphia PA. I gave them all my info and they are to call me back. The center is called the Roberts Proton Therapy Center. Does anyone have any experience with them?

 

UPDATED

July 2010

 

 

Sorry I haven't kept up with the updates. I decided on Proton Beam Treatments at the new center that opened up in January of this year at Penn Medicine in Philadelphia. I called my insurance company, Federal Blue Cross/Blue Shield, before consulting with Penn Medicine and they assured me that my treatment would be covered. Penn Medicine required me to have a transrectal MRI to determine if cancer had spread outside the prostate. My results indicated it had not spread.

Before setting up an appointment for markers to be place for the treatment, Penn Medicine checked with my insurance company again to make sure treatment was covered. This time they said it was not covered. I spent several hours on the phone with my insurance and Penn Medicine and it was determined that in general Blue Cross/Blue Shield covers this treatment and that is why I was told initially it was covered. However, they now denied coverage claiming my Federal Policy plan does not cover it and this overrides their general policy. My doctor at Penn Medicine has written a second appeal indicating that Proton Beam treatment is the best option for me as surgery is risky for diabetics and traditional radiation at my age is not recommended. I cannot risk damage to other tissues and organs that are already at risk due to diabetes.

My latest PSA was 4.1. I have been drinking Pomegranate Juice and eating stewed tomatoes and have also eliminated meat from diet. Not much of a change, but it is lower than original PSA.

At this point I am very stressed out about what I should do. I know I need to do something soon. I'm hoping I get coverage for treatment, but not to optimistic I will. It took me a long time to decide on Proton Beam Treatment and now the bottom falls out. At times I just think, maybe I should have surgery and just deal with the consequences or have IMRT radiation and live my life in anticipation of long term effects. I do have the option of changing my insurance to another company that would possibly cover my treatments. With the federal plans, insurance companies cannot deny coverage due to a pre-existing condition.

Do you know any insurance companies covering Proton Beam?

Regards, Rick

Rick's e-mail address is: rpcallahan@hotmail.com