New to Forum...HELP!!

Hi Patricia,

Thank you so much for the advice. I do plan to follow up on the records from her surgery last year. I do know that all the nodes that were removed at the time were clear. Unfortunately those darn stray cells made it through...

As far as her chemo, we returned this past Thursday and saw the PA she usually sees. Apparently we were led astray by the new doctor she saw the week before. I'll leave it at that. Basically she had a week of worry for nothing. She got her chemo, and actually, all she kept saying was "I'm so happy I get to have my chemo!" Some good did come out of that hell week, she did get updates on her condition from the CT scan, bone scan, EKG and Echo. Her cancer is still located only in her pelvis. Still is growing, but has slowed down. Round 7 will be done again in another 3 weeks. They did mention changing her chemo medication, so I guess we'll see.

Take care, and God Bless you all!

Halsmum....call the hospital where your moms surgery took place ..ask for the discharge summary and path reports. They are yours. They can pull them up in short order. Find out the initial stage and grade of the tumor or tumors. That would be an indication if the doctor followed thru with the proper protocal. How many nodes were dissected at time of removal? Were they all clear? At the most recent urological conference in Ca the concensus was that far to few nodes are removed in cycstectomy.
And sometimes even with due dilligence a stray cell finds its way out...thats why its critical during the first 2 years after cystectomy to have follow up CT scans and blood work.
Its not unusual in chemotherapy for the red count to go down...but our bodies are remarkable in being able to rev that count back up in short order...They should be doing blood work before every chemo session. And counts usually go back up in 2 to 3 days actually. I doubt that she would need a blood transfusion. I've rarely seen that.
Good luck to both of you. Pat

Hi Holly..thank you so much for your reply! First of all, congratulations on your success with treatment of Breast Cancer. It is good to know that another success story has come out of treatment at the Cancer Treatment Center of America. I have a friend who is just about finished with her reconstruction surgery...awaiting "tattooing" and she will be complete! I'm sorry about your diagnosis of BC, however. Regarding Dr. Gee....a co-worker and I were discussing today how one doctor can seem so right for one person, yet so wrong for another. I'm glad you sought treatment where you felt the most comfortable.

I cannot recall exactly which stage my mom was at after/at the time of her neo-bladder surgery. Right now, she is on a 3-day chemo cycle every 3 weeks of Cisplatin, Gemcitabine, and Taxotere. Her first day is roughly 5 1/2 hours in the chair, 2nd day is roughly 5 hours, and her 3rd say is about 45 minutes. Our first doctor at CTCA was an intake doctor I believe, and the Oncologist we had been assigned to was Dr. Granick. When we saw him, he did seem quite knowledgeable about BC...now we have been seeing his PA, Larry Wiggins. He is a very pleasant man, however tomorrow when we see him, he is most likely to get pummelled with questions...as my mom and I have MANY that went unanswered by another doctor whom we saw last week. Frustration has set in, but I do have faith! I'm also the type of person one doesn't want to mess with...I get to the bottom of things...wasn't always like this, but gosh, when a loved one is hurting, someone has to take the reigns!

We drive to CTCA and usually stay overnight in one of the hotels in the area...we live in Appleton, which is just south of Green Bay. Mom is partial to the Radisson near the outlet mall....and the Jelly Belly factory! Anyway, just thought I would respond back, and again, thanks for your reply and prayers, as you and all on this board are now in mine each and every day.

Hi Halsmum,

Sorry to meet you in a place like this, but it is the best place when dealing with BC.
I was DX'd with BC in January 2007 (at age 42)and almost had my RC/neobladder done at the UW Madison by Dr Gee, however his staff scared me and I had the surgery done at Mayo'sin Minnesota instead. My neobladder has functioned very well also. What stage was your Mom'sBC at time of removal? Mine had been thought to be T2a but after RC it was staged T3(thru the bladder wall). That was why my chemo started 6 weeks after the surgery and now I am half way thru the 4 rounds of cisplatin and gemzar. At times my blood counts - white, red and platelets have been off. I get shots of nuepygen, or procrit to boost production of red and white cells. My platelets have come up on their own without and blood transfusions so far. They do expect these things to happen and deal with it.
As far as the CTCA - they are a great facility there in Zion,IL. Iwas treated there 6 years ago for breast cancer. I didn't chose to have treatment there as I was unable to feel comfy they had done much with BC. When I would ask if they had done many neobladders they were to evasive for me to trust it. My breast cancer never came back tho so they did a great job there.
Again, if you know what stage and grade the cancer was at time of RC it helps in knowing what would be considered prudent protocol. Ask me anything if it helps, there is so much support here - your Mom is already in my prayers. I am in Rockford, Illinois - you folks can't be too far from me. God Bless, Holly

Hello....always a bystander, now I have signed up! I've gotten some great advice from the previous posts. Bless you all for your strength and perseverance throughout difficult situations!

I'll shorten my story as best I can...My mother was diagnosed with BC last year in April. She quit smoking the day she found out what it was that had been giving her bladder infections. Yeah Mom!! She went through a barrage of tests, including a TURBT, and was then sent on to a surgeon.

In June of 2006, actually, 6/6/06 to be exact, mom underwent a Radical Cystectomy with a Neo-bladder created for her. Amazing to me, simply amazing. She had a wonderful surgeon at UW-Madison Hospital by the name of Jason Gee. Mom has had minimal problems with her neo-bladder, most due to just getting used to controlling her new "muscle". It has been a year, nearly to the day, and the neo-bladder is working wonderfully.

Fast forward to January, 2007. We returned again to Madison for a routine CT scan. The scan indicated a new mass growing in mom's left pelvis. I was dumbfounded...I didn't know much about BC at this point, just that when they took her bladder out, they said they got everything, and all surrounding tissue tested negative for any more cancer cells. Where did this mass come from?! Mom had a biopsy revealing a cancerous tumor. :'( She had now been referred to an Oncologist. (At no time in the past year did her urologist even mention seeing an Oncologist, which now I find odd, since she has cancer!) Ah, everything is 20/20 vision looking back unfortunately.

We met with an Oncologist at UW-Madison who recommended Chemo as mom's treatment. We were accepting of that, until he more or less pushed his "trial" drugs on her. Unfortunately he went about it all in the wrong way, and completely turned mom off to any "trial" anything. We returned to our hometown and got a second opinion. That doctor also recommended Chemo as the treatment of choice, which we totally expected. With Stage IV BC, however, he said, he told my mom that he will just fill out paperwork for her right away and she could go on total disability, because she should live out the remaining days having fun with family, etc. That news sends the family into total panic.....mom is 49, has 5 children with the 2 youngest nearly 16 and nearly 14. Just wasn't acceptable to mom...which lead me to find a 3rd opinion. I contacted the Cancer Treatment Center of America, the one just north of Chicago. In meeting with the staff and doctors there, mom became much more comfortable with her diagnosis, and confident that she had longer than 6 months to live, as she had been told by her previous hometown doc's opinion.

We began chemo, she goes 3 days every three weeks. After 3 rounds a CT scan revealed that the mass had only grown less than 1 cm, as opposed to 3 cm in one month back in January-February. We were due for chemo round 6 last week, when we were told that mom was too anemic for chemo. Ok, threw her into a complete downward spiral....she stared at the tv in the hotel room for 3 hours straight...and the tv wasn't on...until I informed her that anemia is very common in chemo patients! I do as much research as things happen, but am getting SO much more educated quickly, and am getting better at knowing what questions to ask, etc...

How do we deal with Anemia? Has anyone been too low to receive chemo treatment? What happens then? They did mention a blood transfusion, but before they do that, they did all her tests over again, including a CT, Bone Scan, Echo....we return to CTCA on Thursday to get the results of those tests, and to see if she is able to get chemo this week....

Does anyone know, also, what they do for a blood transfusion? Does that take more time or is it done while chemo is also administered?

And has anyone's doctor indicated a "tumor marker" number to them?

Well, that's all for now...thank you all for listening/reading...I'm so glad I found this site!!!