Forum Discussion
Waiting, waiting, waiting….
Hi all, diagnosed 1st September, multifocal invasive lobular carcinoma. Surgeons appt scheduled for 17 September. Surgeon has referred me for an mri with contrast. The surgeon completed my biopsies (...
HiJ_C I am sorry to hear about your diagnosis and hope you’re doing okay, the first few weeks can be a whirlwind of uncertainty. I am glad you’ve had your biopsies completed (they are tough).
Everyone’s experience is different but yes I did have at least a week to ten days wait after the initial ultrasound and biopsies before I had the contrast die MRI and other diagnostics like the PET scan.
I don’t know what could be meant by “protocols” … sorry. Maybe it’s to do with checking what subtype you have. There’s several different subtypes of breast cancer - I was ILC and a HER2 positive, oestrogen positive and progesterone positive subtype (aka Triple Positive, there’s a Group in this network) and the treatment for this was very targeted.
Sending you solidarity- the waiting and uncertainty phase you’re in was something I found to be challenging as I was worrying about re-arranging my life and workplans. Just the wait for a clear plan tested my stress levels! There’s some great podcasts that I recommend as helpful- by a psychologist who has herself had breast cancer (Charlotte Trottman) - you can find these on the BCNA resourced menu.
wishing you all the best 🌸🌻🌺
Hi Tri,
thanks for replying, they have my ER positive, PR Negative, HER2 Negative results, my nurse let me know after asking the what ‘protocols’ they meant, it’s about conducting the mri at a certain point in a woman’s cycle, it’s all over my referral and information that I’ve had a hysterectomy and been thru menopause so don’t have a cycle so we can’t understand why they can’t book my appointment, I’d understand if they said there’s a significant backlog etc and could book me in a future date, I’m not in a metropolitan area so could understand that, but to not be able to book me in at all….just seems cruel in my brain and heart, because they know about the diagnosis and it is marked ‘urgent’…… I was controlling my emotions and anxiety quite well, but yesterday afternoon (day 10 of waiting) I think I may have hit a bit of a wall…… this mri is to tell us if my two lesions are actually 1 and will change my stage, surgery and treatment. So apart from heatrng ’you have cancer’ this wait is just nasty!
I hear you J_C and your feelings of rising anxiety, worry and sense of being given information that does not stack up for you sounds totally understandable. Everything turns on the diagnostics, so the delay in accessing them prolongs the experience. Sorry you’re going through this and sending hugs and positive vibes your way.
