+ Reply
Log in or Register to participate in these discussions
Update on my journey

Hi All, I was diagnosed as IDC Nov1, 2022. ER+, ( 8/8), PR+ (7/8), HER2-, grade 2. I am age 68.Had my SNB and lumpectomy Nov 30, 2022. Did well post op, back to gym Day 17. Tumour 35 mm, all 5 nodes taken were negative, margins clear, except sl invasion into pec major posterially. So Stage IA. Oncotype DX test Dec 19. Results Jan 11 of RS 10, so no chemo for me. Yeah! So far, so good.
Now the bad news. The radiation Team will be contacting me 10 to 12 weeks post op, that is mid to end Feb to arrange first meeting. And I will not be starting Aromatase Inhibitors for 9 to 12 months post surgery. There are staffing issues at the Cancer Centre causing holdups. I am guessing that I have been triaged into the slow lane due to my low RS score. Is this acceptable standard of care, or should I be concerned? Should I phone some one to get more info on this, or is this just the way things are these days ?saltspringgirl

4 Replies
supersu
1580 Posts

@saltspringgirl
good Sunday morning! it is glorious here in Alberta this weekend, how is the weather on that coast??

thank you for your informative post. I so wish I were able to condense my story into the bare facts as succinctly as you have. as you can tell by my posts I am a ‘bit’ (ha ha), all over the place and ramble on & on. are you a technical writer perchance???

anyhoo, my timeline went something like this:
dx - feb 2020
sx - mar and april 2020
rad'n-jul 2020
start AI - aug 2020
so, it was about 7 months till I was on oral therapy. that was the very beginning of COVID tho, so not surprised the timeline has been lengthened now, three years later.

not sure what the RS score is that you refer to??? some parameter of growth?
I know here in Alberta all patients are definitely triaged according to need. I have been waiting for surgery for a broken foot for almost 3 years!!!!!

a great source of Canadian cancer information can be accessed at 1-888-939-3333. these specialists have access to all the things. maybe give them a call to find out about acceptable wait times, medication efficacy determined by time lapse, and any other questions you have. then you will be informed when you approach your team about this issue.

have a great Sunday friendo. I 110% know the absolute torture that the waiting induces. my distraction of choice became mind numbing TV shows, …..your return to the gym sounds like a much healthier and productive outlet.

let us know how things move along for you.

cheers
su

#breastcancer #waittimes #canadahealthcare #RSscore #breastfriends #stressreduction #waitingistorture

Hi Super Su, It was down to 0 C last night, but there are Rhododendrons in bloom in Beacon Hill Park, where I walk every day with my greyhound. I am a retired physio, so the medical jargon comes easily to me. Doesn’t stop scanxiety any.

RS is the recurrence score result from the $4000 Oncotype DX test paid for by all provincial governments which determines the need for chemotherapy for IDC in ER+ HER2- persons. A sample is sent down to California, either from biopsy or tumour. In post menopausal women a score of 25 or less indicates chemotherapy is not warranted, even if N1. A score of 10 or less is considered low risk for recurrence of cancer in the next 9 years. Google for more info.
I found several very informative articles on proposals of triage during Covid, including a formula to determine who would benefit from starting anti estrogen medications vs needing immediate surgery at the time when surgeries were being curtailed. My husband was in hospital March 2020 for 40 days. It was a hell of a time. No visitors allowed. I was phoning every morning at 6:15 to try and get a handle how he was doing. It must have been horrible for you as well. Take care! saltspringgirl

supersu
1580 Posts

@saltspringgirl
ok - got 'cha!

I also had an ONCO DX - just didnt connect those dots.

health care is tricky for all Canadians right now. I hope you get some attention sooner than the prediction.

cheers and enjoy the flowers
su

#RS

Mona123
9 Posts

@saltspringgirl I was wondering the same. What are acceptable wait times for treatment? I sent an email to cancer.ca. Will post when I get an answer back. Waiting is the worst part of this journey!

+ Reply