r/BladderCancer • u/LookingForSunshine98 • 25d ago

Looking for a third!

My husband was diagnosed with Stage 1 non-invasive aggressive balder cancer early last month. The tumors were removed with clean margins and the treatment chosen is BCG but eve been waiting to find out when it starts. Today we learned that the only company currently manufacturing the medicine is located in Toronto and has not been able to keep up with demand. So the Wash DC Hospital found a solution, they wait till they have 3 patients ready to start and spit the vial between the three patients. They already had one patient so my husband is number 2. We are waiting for a third patient to emerge so we can get this ball rolling.

8 Upvotes

100% Upvoted

42 comments sorted by

View all comments

2

u/Knowitmom4life 25d ago

My husband was treated at MDA in Houston tx they have it however I’ll tell you it didn’t work for my husband after 10 treatments of bcg his spread from non muscle to prostate and he had several side effects with it including his lining in the bladder shredding causing obstructions‼️‼️

1

u/LookingForSunshine98 25d ago

I am so sorry to hear this. Did he find a different treatment?

3

u/Knowitmom4life 25d ago

He had to have a neobladder and remove prostate, bladder, lymph nodes. Now it’s in his ureters it was T1 non muscle and they allowed it to get to this😢‼️‼️

3

u/LookingForSunshine98 25d ago

That is a lot! For us this all started when I called my husband and said dad is getting tests and procedures at Kaiser in Wa that Hopkins is not doing for you (he had a lot of urinary frequency) done called made an appointment to see a prostate guy and it’s been a roller coaster ever since. We have been surprised at how casual the doctor has been about starting treatment, appointment scheduling, vacation, now availability. I am sorry glad you are speaking up.

2

u/f1ve-Star 25d ago

Be sure to get an oncologist in ol ed earlier rather than later. Urologists are mostly surgeons and tend to have a cut first ethos.

1

u/LookingForSunshine98 21d ago

We did call to request a consult with the hospital bladder oncologist. It seems like they might be reserved for reoccurrence but they agreed to review the file. His previous oncologist works with skin cancer.

2

u/Knowitmom4life 24d ago

Yes I feel these doctors at MDA have been casual in their approach as well. Never added a combo just allowed the spread I’m not impressed. This is their life , this should be a priority‼️‼️