Progression after being on Ibrance for two years…CT scans didn’t show any cancer progression. I had one small area that the Urologist found to be inflammation so…I had a PET and found many new areas of metastasized areas. Why are CT scans so unreliable? Kind of scares me now.
I would like to hear from anyone with the same issue and also…how they are doing on Kisquali with Injections monthly.
Thank you so much! LaDonna (Paratrooper)
Woah, that is unnerving! Has it spread to new areas? Did the CT scan miss them because they are tiny? Most of us depend on those darn scans keeping this disease under surveillance! Not good.
My CT scan also said alls good. But my bone scan and MRI said they saw a spot in my hip. I think they are still planning to do a pet scan to see how much more cancer is floating around . I am expecting a medication change but im not sure what route they will suggest. All these procedures take so much time to schedule and then so much time to get results. We hang in limbo waiting for the infomation!!!
It's infuriating!!!We're stage 4??You know??Time is of the essence.. Im a single parent to a special needs 10 year old. He needs me around. I don't have time to pushy foot with bad scans and wrong drugs.. im off to Mayo clinic to get a real oncologist and start nipping this in the bud.. my child needs me around.. yeah . Way to casual how they treat the seriousness of this condition. I PLAN ON LIVING. BUT MEDICAL INCOMPETENCE keeps getting in the way..Arghhh
I had a CT scan when I was first diagnosed and it did was clear. However a bone scan and MRI showed a small lesion on my left ischium which was confirmed to be MBC. Thank goodness my doctor did not just rely on the CT scan. That was 3 years ago. Since then I have only had PET/CT scans which has shown I am stable. I feel like it is a pretty sensitive test as one time it picked up an area of inflammation on my back where I had a small cyst that was not cancer.
Gee, I thought ct scans were reliable. I get them every 3 mths!
I get PET/CT scans. The CT shows tumor and sizes. The PET shows activity and picks up cancer too small to see. In my most recent scan, it found activity in a lymph node that did not show up as a mass of any kind on the CT.
I wonder why oncs don't order pet instead of ct!
Mine does! I was told the machine that does PET/CT is very expensive and only some hospitals have them. They just got a new one at Columbia. The old one was dirty and cranky.
That is Scarry because I only get ct scans. No pet.
I just go5 recent catscan and I have a new tumor in my lung. On ibrance too. Only 6 months . Been telling them it's the wrong medicine all along and get this I had catscan 4 days ago and haven't heard a word from my oncologist. I'm now waiting on a second opinion and going to Mayo Clinic. My oncologist has dropped so many balls and the fact they haven't contacted me about the new growth. And I won't be seeing her for 2 more weeks??so wrong medicine and not a word. I got to MN ONCOLOGY portal and they haven't even received my scan info yet??I've already sent them to Mayo??. So NEW DOCTOR. maybe one that can save my life instead of running me through the mill. I am deeply disappointed in this group and highly DONT RECOMMEND THEM. through my endless dropping of the balls with them
I've been on ribociclib (Kisqali) since 2019 on a 5 days on & 2 days off schedule so my neutrophils stay at a reasonable level. I also take letrozole daily. I have extensive cancer mets in a number of organs but they do not seem to be growing.
Since you mentioned an injection, your Kisqali is likely paired with fulvestrant. That pairing seems to be more popular now. However, a 2022 medical study concluded, "In conclusion, ribociclib with letrozole or with fulvestrant is effective for the entire spectrum of patients with HR+ BC in the advanced setting."
I am 78 years old. Although cancer seems to be more common with aging, I wonder whether it is also slower-growing?? I think most studies find there is an advantage in terms of survival to be post-menopausal....
Starting Trodelvy 
Fulvestrant injections 
ErSO Let's bombard Bayer with messages to start trials!
Third Faslodex injections
