Updated: Dec 1, 2021
So, naturally I'm obsessed with boobs now and I follow many, many breast cancer pages and prophylactic mastectomy, mastectomy, and previvor pages.
Yesterday I learned of this great page. Empowered mastectomy <click there
I also learned about the PET test.
A test not offered by doctors in Ontario because of the cost $2,200.
A woman with breast cancer, had a friend who is a Harvard-trained physician, was a prof at U of T Medical school, wrote the book on PET-CT scan, and the first (and most cited) published paper on PET. He was a professor at UofT Medical School. In fact, he wrote the first published paper on PET and it is the most-cited journal in all of imaging globally.
This friend and doctor told her PET it could change the management of my disease.
She put it off as she had received several ultrasounds, CT scan, MRI and bone scan and felt like she'd had a zillion scans already! Finally in September before my surgery, she got the money together to pay for the private PET.
The PET revealed 2 subpectoral lymph nodes that had not been picked up by the CT radiologist or MRI or the many ultrasounds I had. She was petrified and stunned by the realization that she had been about to go into surgery without this information. She forwarded the information to her surgeon.
All of her other scans had shown Level I and II lymph node involvement, but the PET result showed that even Level III nodes were involved. This definitely changed the management of her care! The surgeon remove all 3 levels of lymph nodes and discovered that the node was not super close to the bone and he was able to get clear margins. In her final pathology a total of 7 out of 16 lymph nodes were positive.
If she hadn't had the PET scan those 2 lymph nodes would still be inside her! The surgeon would not have known to go looking for them.
After her surgery she requested a second opinion from one of the top cancer hospitals in the US and in the second opinion the Medical Director and Breast Oncologist recommended that she get annual PET scans for 5 years.
She has been devastated both personally and collectively for all women in Canada who aren't being told that a PET scan could change the management of their disease (or even save their life like it has mine) and who don't have the financial resources.
When mentioned to her oncologist the (typical) response was given- well the government can't pay for all women to get one it would be too expensive. Wow. She's happy for me that I got one but she DIDN'T suggest it!
Canadian doctors won't recommend anything that you have to pay for because they are hired by the government to give us whatever options are universally available to all patients.
To me (and to this cancer patient) a wait-and-watch approach is NOT ok.
This is our lives and we are worth more than $2200.
Some of you might wonder what a PET scan is and how it is different. you are injected with glucose as a radioactive tracer and because cancer uses up to 50X the amount of glucose of a non-cancer cell the cancer cells take up more of the glucose tracer which is then visible on the scan. It is this way that the PET scan can detect "metabolically active malignant lesions". So if you have lesions and they are "watching" them through CT, MRI and ultrasound it is because those scans don't show the metabolism of the lesion so they just keep scanning them and watching for changes. A PET will show the uptake. Only cancer will light up with the PET-CT so you'll know if the lesion is cancer or not. The imaging won't pick up individual cancer cells - the lesions have to be a certain size.
She got her appointment in a matter of a couple days.
You DO need a requisition from your doctor and can get one signed from any doctor.
She got a requisition from the My Health Centre people and had my family doctor sign it.
As for me. No updates yet, Clinic is closed for December, surgeons need holidays too.
Surgeons fantastic secretary who isn't sick of me yet (Jessica you rock at your job) is checking to see if they have booking dates in January or February today so I should have an update by end of week.
Tomorrow I get my previvor tattoo, eeeek. Update with that to come once healed too.
Just finished purchasing my kids Christmas gifts, Santa knows what they want as well. Grumps has purchased their presents, and granny and papa, the only one left to shop from is geegee (AKA GG, Great Grandma, my moms mom)
Feeling good about the rest of this year. I feel like we got the news about mom and Kev last November and so a full year of absolute crap for my family (immediate and extended) has passed.
Mom's genetic results
My genetic results
My siblings genetic results
and failed embryo transfer.
I did find LOTS of four leaf clovers.
so here's hoping Katrina's egg donor passes, and Katrina's embryo's stick and my surgery date comes through. woot woot.
also the FDA just approved a blood test that can predict breast cancer early. Say. wHAT?
…We are pleased that the FDA has recognized the potential of TriNetra for the detection of early-stage breast cancer. We believe that TriNetra will offer definitive advantages for breast cancer screening once it receives marketing authorization from the FDA,”
No more grief support group and their art therapy is still on hold and everything else is only offered during the work day, so guess I'm cured.
Miss you so much momma.
Wish you were here.