What we do usually is accept what is seen at the time of the scans and go with it, the problem is the unknown is always there, in our heads as well.
He seems to be handling this okay for now, I would enjoy every minute you can with your dad and hope the next scan is positive even if your mind goes elsewhere. Easy to say, hard to do!!! MAKE THE MOST OF EVERYDAY!
NONE of us knows Harley what the next CT or PET is going to show whether we're 3 months out or 5 yrs out or even l0 yrs out. You just can't dwell on it..you have to live your life and if it happens to be pain free what more can you ask for. Until bladder cancer gets the attention that other cancers get and progress made we're all in the same situation regardless of our age. Great strides have been made in breast cancer mainly due to earlier detection but there are still many young women who get a particularly virulent form of the disease and its a crap shoot for them. We can't predict outcome for any of these cancers.
Thanks, everyone. My Dad had a second opinion yesterday and the doctor did order a PET scan which is going to take place this Friday (8/15). Dad won't get the results until he meets with the doctor again on 8/26 which just happens to be his 82nd birthday.
The doctor yesterday was the one who Dad originally had an appointment with last year to talk about cystectomy. Dad didn't keep the appointment and instead chose to see another doctor who had operated on a friend of my brother. As it turned out, that may have been the ONLY radical cystectomy that doctor had ever done! He chose to leave Dad's urethra and that's where the cancer was found recently.
The doctor yesterday was brutally honest with his opinion (which was based only on the pathology report we gave to him and his prior experience with similar situations.) He was not optimistic, to say the least. Suffice it to say that he made me cry. He recommended an even MORE radical operation than what my Dad's current uro has recommended and added that he is not sure whether my Dad could even survive that type of surgery. He did say that Dad's current urologist is an excellent surgeon with a great reputation.
I asked Dad if he is sure he wants to know if the cancer has spread and he said "Absolutely." If it has spread to other parts of his body, he is not going to submit to the scheduled surgery. He feels great right now and is walking an hour each morning.
My concern is that, with any test, the results are a snapshot of that particular moment. That doesn't mean that next week or next month that "snapshot" would be the same. Just because the scan is clear today doesn't mean there is no cancer or that there will never be any cancer. That's a hard thing to wrap my head around.
Guess we just have to wait and see how the PET scan comes out and then make the next "best" decision.
My husband, Bob had 5 PET scans last year. We were told after the 3rd one that insurance would not cover but either he was put into the "PET" bank that you referred to or the insurance covered it. I am not sure which one. Each scan was over $4,300.
Bob's BC had metasticed so much that the PET scan is what he needs and his doctor has been so good at ordering whatever he thinks is needed. Sometimes we are not so sure that that many scans are good for you but at this point with Bob, I do not think it would make much difference.
After going through cancer with my younger sister and a niece, I definitely think PET scans are in order if the concerns are there.
Caretaker of husband, Bob.
Diagnosed Jan, 2007
Harleygirl, I had T1G3 TCC & CIS. I was referred by my Urologist to a Cardiothoracic surgeon because my CT scan showed 2 enlarged lymph nodes in my lung. He wanted them to do a lymph node biopsy. My Uro did not think that the enlarged nodes had anything to do with my bladder cancer. For a reason I don't know, they were looking for lymphoma or hodgkins. It was the Cardio surgeon who scheduled me for a PET scan. They have them in several locations in town but the one he sent me to was a private office where they do a PET scan & a CT scan at the same time so that they can be overlaid. The Pet shows the hot spots and the CT shows the outlines of the organs, bones, etc. The lymph nodes did not show up as hot spots, so the biopsy was put off until I had gone through 6 weeks of BCG treatment. A lymph node biopsy was done later and the nodes were benign. In this case the PET scan was accurate. I wish I could have one every year. My insurance did pay for it. I sure hope you Dad can get one. Kathy
11 years 11 months ago - 11 years 11 months ago#20203by Lyn
hi...i am new to this forum...my dh was dx with invasive blc in march...before they started treatment (gemzar and radiation) the medical oncologist wanted and pet scan done...the radiation oncologist didn't...he said nothing smaller than 9mm would show up and that it was a lot of money without good results...my husband chose to have a pet scan anyway...it was clear at that time...he had a ct scan about 3 weeks ago that showed an 11mm spot that they are watching.
i think i would have whatever i felt would give me the clearest picture expecially when it is already invasive
good luck with your father...lyn