Must manage your own healthcare

[B17865]

Hi everyone! I’m Jennifer. Found my breast cancer because God gave me an itch right on top of my tumor. It was 26mm and not seen on the 3D mammogram. I now tell everyone I know that women cannot rely on mammograms to find breast cancer. Must do regular self exams. Had double mastectomy and found macrometatastisis in my sentinel lymph node. Had 4 rounds of AC and 12 rounds of Taxol. Had 25 rounds of radiation. Was told in May 2023 that it was time to start on Letrozole and at that same appointment I asked for a PET scan to confirm I was cancer free. My oncologist said I had no evidence of disease and my labwork was perfect so she suspected nothing. I had asked my previous oncologist 3 times for a scan and was told it wasn’t protocol. Since the PET scan revealed a liver lesion, I was so glad I switched oncologists to one who would order a PET scan. She said it should have been ordered in April 2022 when I turned out to be lymph node positive. My liver biopsy confirmed metastatic disease. My liver surgeon successfully performed microwave ablation. Due to the potential side effects, I reluctantly started on Ibrance with Letrozole 2 days ago. I stumbled across this group when searching for Ibrance side effects so I joined. Because I am a private person, I’ve never used any form of chat or social media so this is new territory for me. I was told that there are only 40,000 of us in the USA taking a CDK 4/6 inhibitor, so we are definitely a small and special group!

[SabaAK]

Hi Jennifer. I’m glad that you are doing ok now:). 26 mm is not so small,how did they miss that on mammogram!?. My mom’s tumour was 20 mm and they saw it right away with regular mammogram,not even 3D. I did have mammmogram myself today with 3D and have itchiness on my left breast,don’t feel anything with self exam. Hmm,I’m kind of concerned now.

I don’t know why oncologists refuse to order PETscan,had the same issue with my mom’s oncologist, I literally made her to order PEtscan by calling her office everyday for the past 2 weeks😣. I need to find her new oncologist as well.

Saba

[B17865 in reply to SabaAK]

Hello Saba! My tumor was at the top of my breast which made it difficult to see on mammogram but it’s irregular edges showed up clearly on the ultrasound. Scary that I had going to breast clinic every 6 months for years and they missed it. The only time I ever had the itch right on top of it was when I found it. Your persistency paid off for your mom!

[SabaAK in reply to B17865]

OMG,every 6 months and they were not able to detect it?? That’s really scary!

[CyndiA in reply to SabaAK]

I did my oncologist for not doing s scan after 1 year. Switched oncologists and, based on my fatigue, she ordered a CT and bone scan. Mets to 3 hip bones and 2 to my spine. Been doing 4 years on Letrozole - still working, but I hurt all the time so we stopped. Doing great on Ibrance and exestamine. Actually, the Ibrance makes my hair a little curly, which I love. Does take longer for wounds to heal, but hey.... I'm still here!

[NPmary]

Good for you advocating for yourself!!! You should do very well on those meds I was progression free on them for 5 years, other people even longer. Best, Mary.

[Hopeful4Cure]

I just wanted to let you know that, that was the same way I found mine. Although it was in the middle of the night and obviously then I tossed and turned. I went to my primary and HE tfelt it and told me it was PROBABLY just a fatty tumor. Nope. So, true the need to really be your own advocate.

[Gingerann1]

Sorry you’ve had to join the club but hope you will be happy to have found this group. Lots of great information and support, particularly in dealing with side effects from the different treatment options. I have found a lot of comfort here. Hope you will too.

[B17865 in reply to Gingerann1]

Thank you!

[hurricaneheather]

doing a self exam, i found the initial bc in Oct 2011, that the mammogram missed earlier in the year; a mBC DX was July 2015. interestingly, i was scheduled for a regular initial bc appointment in July 2015. i called the onc's office to ask if a PET/CT scan was required at some point? he stated, "not the upcoming visit because results had been NEAD. scans are only required if dis-ease recurs or metastasizes." must have been intuition, because as i mentioned, that July appointment presented a mBC dx. i am an emPOWERed woman in charge of my choices. i am open to sharing the story for those who want to listen. a cancer dx had become an additional path for me to speak up... newspaper, magazine, interviews, speak at cancer events....