Transitional Bladder Cancer Grade 3 T2
RC scheduled for 11/11 with neobladder
Initial Submission 10-20-2005 from Bob Stump
My and my wife’s sanity is being preserved by being able to follow this group and consult both on and off line references you have recommended during the past 3 weeks — during the time of my diagnostic procedures. I would like to introduce myself to other members of the group and offer to share my experiences as we proceed on this unchosen path with others in the bladder cancer cafe.
Recent history:
I am 60 years old with no prior history of cancer. I had one episode of blood in my urine for one day about 4 years ago which was treated with antibiotics back then.. When I recently observed blood and clots in my urine about 2 months ago I saw my PCP who did a urine culture (positive) and treated with antibiotics for a prostate and/or bladder/kidney infection. The bleeding stopped but I was feeling aches in all my joints after a week and he tried a second antibiotic. The aches and feeling of weakness disappeared. When Some blood started showing again he added Proscar to my meds still suspecting a prostate problem.
After more blood and more clots I decided to see a urologist who was associated with UPMC (University of Pittsburgh Medical Center). He saw me the next day and did a uroscopy wherein he observed some problematic bladder sites and he scheduled a bladder biopsy. Five days later he called and did a very excellent job telling my wife and me very bad news. A high grade transitional cancer had been found invading my bladder muscle in two places that he had sampled and cancer cells were found in other parts of the bladder too.
He scheduled a CAT scan which showed that the cancer did not appear to have gone further than the muscle layer, but there was a tiny spot in my lung which needed to be explored. If the lung spot wasn’t cancer spreading from my bladder, this urologist recommended removing the bladder, prostate and lymph nodes – routing urine flow to a stoma. When I asked about neobladder possibilities, he responded that he did not want to introduce risks from added hours of surgery and a greater possibility of urethral cancer developing later. He referred me to an UPMC oncologist for further workup. A PET scan was performed.
Thinking it wise to seek second urologist’s opinion I had an appointment with a different urologist/oncologist the day after the PET scan . Although the PET scan report had not been completed this Dr. was able to view the scan on his computer over the UPMC computer network. He was also able to see the CAT scan. We took the slides from the biopsy for review by him and another pathologist. He did not think that the object in my lung was cancer as it didn’t show up as such in the PET scan. The rest of the PET scan was good. It agreed with the CAT scan that there was no indication of the cancer having spread past the bladder muscle.
As he teaches urology/oncology at the medical school, I asked him if he knew of the bladder sparing surgery being done successfully in Mass. (referred to a couple of weeks ago in this Bladder Cancer Cafe). He was aware of that work and the results. He said the work was impressive and did offer an alternative. His opinion was that because 1/3 of those patients eventually required RC and because that treatment would require radiation as well as chemotherapy he would recommend a RC and neobladder construction – which he had done over a hundred times. He thought that it was very unlikely that I would require radiation therapy. He was uncertain whether chemotherapy would even be necessary (depending upon biopsies done on the body parts removed during the RC). He saw no contraindications to doing a neobladder (although he could not be sure until the surgery was actually underway). He said that nerve sparing was possible in about 50% of these surgeries.
I liked this second doctor’s enthusiasm regarding neobladder, as well as several other factors in his situation when I compared him with the first urologist – therefore told him I expected to follow through with him for the surgery (now scheduled for November 11). He scheduled a needle biopsy for the lung, which subsequently failed as the particle was too small and kept moving away from the needle.
Last week we met with the oncologist who had ordered the PET scan and he confirmed the interpretation given in the second urologist/oncologist’s office. When we told him about the unsuccessful needle biopsy, he recommended proceeding with surgery for the known cancer and that I see a lung specialist next year to follow up on the lung questions.
Present:
I am currently diagnosed with Transitional Invasive Bladder Cancer, Grade 3, Stage T2. I am scheduled for RC and hope for a neobladder construction on November 11. My doctor is Ronald L. Hrebinko MD, FACS of Hillman Cancer Center UPMC in Pittsburgh PA. I fortunately live about 5 miles from Shadyside Hospital (UPMC) where surgery will be performed. They have a floor in that hospital dedicated to Urological Surgical Patients and I believe the surgical suites are adjacent to the hospital rooms for the patients. Each patient gets a single room with a fold out couch/bed for my spouse and/ or children to use as they help post surgery.
I certainly have some stress about coming events, but have been successful in maintaining positive thoughts and optimism. I do dread a lot of what’s coming up because of unknowns and the long period which may be necessary for recovery. I have never had major surgery before although I did have general anesthesia 2 times.
I am concerned that my wife seems to be much more stressed than me. We went to our first local cancer support group meeting last night, and feedback suggested that the stress may indeed be greater for her because she may feel compulsion to try to “fix” me, and that she is planning to help care for me. I also believe she has a greater fear of my dying than I do myself. I’d feel the same way. She has 4 stents in her heart and follows the Dean Ornish Program for Reversing Heart Disease. This involves a strict low fat vegetarian diet, an hour of yoga per day, regular exercise and a support group that meets weekly. I have been following the diet part in supporting her for about 2 years now.
She is presently frequently mixing up what day it is, forgetting things, having bad dreams, and my coming operation is on her mind all the time. I appreciate her great assistance in note keeping, keeping friends and relatives updated via email, and helping formulate questions for the doctor etc. Any feedback from people regarding family stress and ways of coping could be very helpful at this time.
My request of you in the group who have read this far is that you provide me with observations or feedback on what I have been able to tell in this introduction. I’d welcome questions, suggestions – thoughts in general — as well as support and prayers from anyone who cares to respond. I have begun to feel a love and camaraderie for all who are sharing your experiences and hope. This group means more to me and to my wife than I can put into words except to say thank you and to promise to try to help others as you have helped me so far. I am not glad to have this disease, but I am glad to become part of this group. Sincerely —– Bob Stump
