Doing the dance Updated 022718 6:30 pm
February 15, 2018 11:10am Back to In the Beginning
Met with the radiation oncologist, Dr. Farzaneh Farzin, yesterday. She was hesitant to start anything since the pubic bone may need radiating as well as the bladder. Since they both align, if she targets the bone which was the thought, then later if she needs to target the bladder the bone will get additional doses which could be detrimental. So until we know if both are going to be targeted, she doesn't want to move forward. Right after, since they are in the same building, went to appointment with Dr. Vogelzang.
He said we're doing a dance with the cancer and it's hard to know what steps to take next. Being that the ureter is still blocked, he doesn't know if it's due to scar tissue, swelling or the tumor. He is sending me back to the urologist, Dr. Kassahun for a cystoscopy to get a look inside. He said it is quick and done in the office. However; Kassahun may decide he needs a biopsy as well.
He said we have a lot of treatment options to pick from depending on what that and the Pet Scan show. We talked about surgery and he was promoting a stoma over a neobladder due to complications of the latter. Plus there's really no good place to get it done in Las Vegas and even if Kassahun could do it, he doesn't get paid enough from insurance to do it. Dr V said the procedure isn't really designed for community health care practice; that best to go to a research hospital.
Dr V recommended that if we did want to go that route, to go to USC Norris for it. My friend Joyce Stein's husband went there for it back in 2003 and still has it and is happy with the outcome. It would be out of network for my insurance, so big bucks. Dr V said he had a patient who had the neobladder who switched to a stoma after a year because of the hassle and complications. It's hard to find good statistics on outcomes, but complications seems to be the norm. Some of the complications involve the kidneys and since I will only have one, that would not be a good thing to encounter.
Dr V isn't that convinced that radiation is all that effective for the bladder before surgery, but chemo is only 95%, but the radiation would kill off any remaining cancer cells in the bone. He talked about immunotherapy, but there again, the example he gave is Keytruda which has some miserable side effects that are a mile long. He also mentioned some different cancer drugs. So until we know the outcome of the cystoscopy and Pet Scan, he really can't plot a course of action. It's also hard to decide how long to leave in this dud kidney, but that's a conversation with Kassahun, but I'd think it would be after the rest of the treatments and when my immune system is back up to snuff. Dr V thinks that if Kassahun takes out the kidney, he will want to take the bladder at the same time. However; if the cancer has spread more in the bone, they might wait on the surgery. So Pet scan and first visit with Kassahun's physician's assistant are scheduled for next week. We'll see how long it takes to schedule the cystoscopy. Then Kassahun and Vogelzang will confer and we'll figure out the plan.
February 16, 2018 10:30am
I received a call from the genetic counselor, who said of the 28 genes in my normal cells that they tested, none were mutated. So at least I haven't potentially passed anything along anything to my kids. A different genetic test was performed that the oncologist ordered on cell-free DNA - DNA that just randomly floating around in my bloodstream from the tumor. That showed 5.2% mutations in three genes that are fairly typical of tumors. So those mutations came about as the result of or as a precursor that allowed the cancer cells to develop. Oncologist has ordered another of these lab tests to see if there's been a change since that 5.2% was based on a blood test taken before I started chemo.
February 23, 2018 3:30pm
Went for the PET-CT scan on Tuesday and got the radiologist's report today. Tumor in the bladder is about half the size, but the part of the bone that's impacted has grown by a third. Going for a cystoscopy on Tuesday. I met with the urologist's PA on Wednesday, but she was no help, other than getting the cystoscopy scheduled and put in a request for home health visits to keep the nephrostomy in check. I asked her about changing the nephrostomy stabilizer patch and all they did was cover it with a new dressing. The nurse that came in said she had no idea how to replace the stabilizer. Not having much hope for the home health nurse in that regard. At least I'll have everything done that Vogelzang requested before my next visit with him on the 6th.
February 27, 2018 6:30pm
Went for the cystoscopy today. Not as bad as expected and over very quickly. Disappointed that the urologist had no idea why he was doing it and told me I had a tumor like it was a surprise. Once he understood who I was and why I was there, he said surgery isn't an option until the cancer is under control. His concern was what was in the bone. He said once that is taken care of then he would consider it. So back to Vogelzang. Frustrating that there's no more info than we got from the Pet scan and no treatment since January. Hip starting to bother me more. Glad I don't pee like a dog, cause I can't lift my leg to the side that way.
Next: I'd be remiss
Met with the radiation oncologist, Dr. Farzaneh Farzin, yesterday. She was hesitant to start anything since the pubic bone may need radiating as well as the bladder. Since they both align, if she targets the bone which was the thought, then later if she needs to target the bladder the bone will get additional doses which could be detrimental. So until we know if both are going to be targeted, she doesn't want to move forward. Right after, since they are in the same building, went to appointment with Dr. Vogelzang.
He said we're doing a dance with the cancer and it's hard to know what steps to take next. Being that the ureter is still blocked, he doesn't know if it's due to scar tissue, swelling or the tumor. He is sending me back to the urologist, Dr. Kassahun for a cystoscopy to get a look inside. He said it is quick and done in the office. However; Kassahun may decide he needs a biopsy as well.
He said we have a lot of treatment options to pick from depending on what that and the Pet Scan show. We talked about surgery and he was promoting a stoma over a neobladder due to complications of the latter. Plus there's really no good place to get it done in Las Vegas and even if Kassahun could do it, he doesn't get paid enough from insurance to do it. Dr V said the procedure isn't really designed for community health care practice; that best to go to a research hospital.
Dr V recommended that if we did want to go that route, to go to USC Norris for it. My friend Joyce Stein's husband went there for it back in 2003 and still has it and is happy with the outcome. It would be out of network for my insurance, so big bucks. Dr V said he had a patient who had the neobladder who switched to a stoma after a year because of the hassle and complications. It's hard to find good statistics on outcomes, but complications seems to be the norm. Some of the complications involve the kidneys and since I will only have one, that would not be a good thing to encounter.
Dr V isn't that convinced that radiation is all that effective for the bladder before surgery, but chemo is only 95%, but the radiation would kill off any remaining cancer cells in the bone. He talked about immunotherapy, but there again, the example he gave is Keytruda which has some miserable side effects that are a mile long. He also mentioned some different cancer drugs. So until we know the outcome of the cystoscopy and Pet Scan, he really can't plot a course of action. It's also hard to decide how long to leave in this dud kidney, but that's a conversation with Kassahun, but I'd think it would be after the rest of the treatments and when my immune system is back up to snuff. Dr V thinks that if Kassahun takes out the kidney, he will want to take the bladder at the same time. However; if the cancer has spread more in the bone, they might wait on the surgery. So Pet scan and first visit with Kassahun's physician's assistant are scheduled for next week. We'll see how long it takes to schedule the cystoscopy. Then Kassahun and Vogelzang will confer and we'll figure out the plan.
February 16, 2018 10:30am
I received a call from the genetic counselor, who said of the 28 genes in my normal cells that they tested, none were mutated. So at least I haven't potentially passed anything along anything to my kids. A different genetic test was performed that the oncologist ordered on cell-free DNA - DNA that just randomly floating around in my bloodstream from the tumor. That showed 5.2% mutations in three genes that are fairly typical of tumors. So those mutations came about as the result of or as a precursor that allowed the cancer cells to develop. Oncologist has ordered another of these lab tests to see if there's been a change since that 5.2% was based on a blood test taken before I started chemo.
February 23, 2018 3:30pm
Went for the PET-CT scan on Tuesday and got the radiologist's report today. Tumor in the bladder is about half the size, but the part of the bone that's impacted has grown by a third. Going for a cystoscopy on Tuesday. I met with the urologist's PA on Wednesday, but she was no help, other than getting the cystoscopy scheduled and put in a request for home health visits to keep the nephrostomy in check. I asked her about changing the nephrostomy stabilizer patch and all they did was cover it with a new dressing. The nurse that came in said she had no idea how to replace the stabilizer. Not having much hope for the home health nurse in that regard. At least I'll have everything done that Vogelzang requested before my next visit with him on the 6th.
February 27, 2018 6:30pm
Went for the cystoscopy today. Not as bad as expected and over very quickly. Disappointed that the urologist had no idea why he was doing it and told me I had a tumor like it was a surprise. Once he understood who I was and why I was there, he said surgery isn't an option until the cancer is under control. His concern was what was in the bone. He said once that is taken care of then he would consider it. So back to Vogelzang. Frustrating that there's no more info than we got from the Pet scan and no treatment since January. Hip starting to bother me more. Glad I don't pee like a dog, cause I can't lift my leg to the side that way.
Next: I'd be remiss
