September 2008 PTC-H Prostate Patient Group Newsletter
The Proton Therapy Patient Group meetings are starting up again after a summer vacation. The meetings
are held on the 4th Wednesday of the month by the Radiation Oncology Social Workers at the Proton Therapy Center starting at one o’clock. Next month’s meeting will feature Dr. Andrew K. Lee.
Nurse Practitioner Tai Ly spoke at a well attended session consisting of mainly of patients undergoing treatment. Two “graduates” Steve Kennedy and Joe Landry who live in Friendswood and Clear Lake attended. Local attendance was definitely affected by Hurricane Ike recovery.
Tai Ly has been battling breast cancer. Starting in the fall of 2007, right after she completed constructiong her dream home in New Mexico, Tai was diagnosed. She’s been through a series of treatments and surgeries including one she was recovering from at the meeting. On another note, Tai was interviewed and is quoted by the National Nursing Oncology Magazine, ONS Connect, page 8 http://www.nxtbook.com/nxtbooks/ons/connect_200809/
An additional radiation oncologist, Quynh-Nhu Nguyen, M.D., joined the MDACC Radiation Oncology’s Genitourinary service in August is now works with Dr’s. Lee and Choi at the Proton Center to treat prostate cancer in addition to other services at the Mays campus. Dr. Nguyen received her M.D. degree from the George Washington University School of Medicine. Her residency training was at University of Virginia and fellowship training at The University of Texas M.D. Anderson Cancer Center.
Fitness Facilities - Patients at the PTC –H have frequently asked about fitness facilities in the Medical Center area and we learned at the meeting that interim memberships at The University of Texas Medical recreation center are available to the patients of the Proton Center. With your patient ID card you can get an interim membership for 10 workout sessions for $40. http://ae.uth.tmc.edu/recreat/index.html
Meeting Notes
Email Communications to Your Doctor - Patients sending e-mail to Dr’s. Lee, Choi, or Nguyen should as a practice send a copy to Tai Ly as an FYI. Tai will help you follow up with any questions or communications you might be looking for. The doctors are so busy that even if they use their personal data assistants (Blackberries) extensively, sending Tai a copy will assure that your questions are answered.
Post Treatment Follow Up Visits and PSA Tests - A “graduate” who lives a distance from the Houston area should definitely look to make the 3 month follow up at MDACC. If you’re from out of town, the frequency and the timing of your visits is negotiable. The staff recommends that you use blood sample kits to have your PSA determined by MDACC laboratories. You may have an excellent lab in your city but if you want to measure changes in PSA levels or the all important velocity of change I think it’s best to stay with the MDACC labs. We’ve seen large variations between some labs and MDACC.
Quality of Life Surveys (QOL) - Should be filled out as a baseline prior to treatment, at the end of treatment, every 3 months for a year, every 6 months for 3 years and once a year for 6 years. For the other study which is the multimodality QOL, that compares to others who opted for a different modality of treatment: the frequency is - pre- treatment, 3 months after treatment, 6 months after treatment, 12 months after treatment, then at 18, 24, 36, 48 and 60 months anniversaries. The surveys will be used for comparative results on surgery, brachy, IMRT and PBT.
Diet, Gas and Beano – As my doctor, Dr. Lee took a very pragmatic approach to diet and recommended that I not make drastic changes to my regular diet. However his goal, as the radiation oncologist was to have the clearest view of the field to be treated and you should be aware of the foods that produce gas. Gas will can displace the prostate gland and the goal here is to have the position of the gland to be precisely as measured during the simulation. Also, in post treatment recovery, watch the amount of blood thinners such as Plavix, Coumadin and aspirins and lack of fiber that you take in. Remember that some herbal medicines and teas may act like blood thinners as well. You may want to take a stool softener if warranted. We’ve had 2 sessions at the Proton Group meetings on diet and a summary of the talks including a booklet on nutrition for proton therapy patient are on the ProtonPals web site. http://protonpals.net/nutrition/nutrition-2
Hormone (Lupron) Some intermediate and high risk prostate cancer patients are given hormones (neo-adjuvant therapy). The risk level are determined by the stage, PSA levels, the Gleason score and the percentage of the glands with tumors, sometimes expressed as number or percentage of biopsy needles that are positive. Patients with Gleason score of 6 and 7 are treated at the PTC-H.
Colonoscopy - Have a colonoscopy prior to radiation therapy or wait one year post treatment before having the test. If you choose to have a test, please inform your PTC-H before you have a colonoscopy. That way they can give you instructions on what to tell your GI doctors so they don’t biopsy or cauterize the bleeding at your rectum. The percentage is very low but there are some reports of rectal bleeding. This could be aggravated by use of blood thinners or hard stools. Treatments for rectal bleeding are the avoidance of hard stools with diet and stool softeners, suppositories, hydrocortisone, or argon plasma coagulation (APC) for the most severe.
J.E. Landry, ProtonPal and April 2007 Graduate
832-335-0353
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