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 (3) in breast screen clinic, so I’ve met her. My biggest question now is how long do you wait for the mri apointment? They acknowledge receipt of ‘urgent referral’ on 2nd of September and now it’s the 10th, they’re telling me they are waiting on ‘protocols’, my breast care nurse is wonderful and is following it up along with me, how long did you all wait? I thought I was coping not too bad, but today it all just seems really cruel……?
11 Replies
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.
J_C It's sad to hear that the imaging place is creating unnecessary headaches for you at a very difficult time.
Have you tried to contact the surgeon's office to let them know what's going on?
My surgeon's office stepped in and made miracles happen when it turned out two referrals hadn't been acted on.
MRI wait times will vary based on many factors but for comparison my surgeon sent a referral for me and the imaging place called me the same day to book it. The MRI has to be done on day 10 of my cycle so there's around a two week wait but as you've pointed out, that does not apply to you.
Hi Moomincorn,
thanks for replying, I am probably being unreasonable, but my point it, they’ve said ‘protocols’ and then I find out it’s cycle related (which I don’t have) but they’ve not even contacted to to see if I have a cycle or where I could have been within that cycle…. I have contact my McGrath nurse a few times and she has followed it up and I’ve rung them myself but of course you get an admin person who is the gate keeper and just repeats the well practised and rehearsed responses. I can’t even get the referral and try to go to another radiologist….. I truly think I’ve just hit a point where I need things to happen because we need to move on, get a full diagnosis (which is probably after surgery anyway, but surgery needs the mri, vicious circle)….. thanks for replying, I know there’s nothing I can do but ‘hurry up and wait’……. Needed a whinge I guess…
J_C You are not being unreasonable at all. You are trying to make the gate keepers realise that they're delaying something that is important. They don't have any reason for not giving you a date.
Could the surgeon's office give you a copy of the referral? Or send it through to another place on your behalf? They're the one who made the referral so they might have more sway with imaging places than the breast care nurse.
It's important to whinge and let the frustrations out! It helps us to breathe while waiting for the world to catch up.
So sorry to see you joining our select little group, J_C ... whack up any questions that you may have & we'll do our best to answer them as we've 'been there, done that'.
There is also a specific Lobular Cancer private group where ILC is discussed, professional medical papers/links added .... go here and join up, if you like, as ILC 'presents differently & acts differently' to other types of BC:Group: Invasive Lobular Cancer (ILC) | BCNA Online Network
If you are living in a city or large regional town with more than one Radiology service - you (or your wonderful BC Nurse) may be able to ring around & get put onto their cancellation lists (if there aren't any 'earlier' appointments ...) then cancel the others once you get the earliest one available!
Hopefully, as your surgeon has listed it as URGENT - they SHOULD be able to slot you in quicker. (I am sure that most places DO have 'urgent slots'!)I'd suggest that you take a trusted friend or relative with you to your meetings from now on, for both physical & mental support and even an extra set of ears - and also consider RECORDING them too, on your phone xx. It is almost impossible to remember everything that is said & this way you can go back over it in the quiet of your home & take notes. xx
Yep - the waiting really sucks! :( If you are feeling a bit stressed (which is 100% normal, as this diagnosis mucks even more with your brain than your body!) give our Helpline a call on 1800 500 258 (Mon-Fri, 9-5) for a confidential chat - and/or consider listening to Charlotte Tottman's Podcasts on her own experience with BC - as she explains it all very well xx
She is a specialist breast cancer Counsellor who had a double mastectomy following her own diagnosis, choosing to stay flat. She was surprised at her own reaction to the news/surgery/treatment, as she'd been counseling others for many years & thought she 'knew it all'! She has done 2 ‘podcast seasons' ... check out the 1st season, right from her diagnosis onwards and how she coped, then move on to the 2nd season.
She is very easy to listen to & you'll probably recognise some of your own reactions in many of the podcasts.http://www.drcharlottetottman.com.au/my-podcast.html
Check out this thread too - there is a lot of general info on the forum & what to take with you to hospital - even 'tick sheets' that you can fill in to take with you to your appointments on your mental & physical health .... this info has been gleaned from many of our members over the years ... I hope it helps you xx
https://onlinenetwork.bcna.org.au/discussion/23477/a-big-welcome-to-all-new-online-network-members#latesttake care & all the best xx
I finally got my call to book the mri today, 11 days after radiologist got the ‘urgent’ referral. I’m just pleased to have the booking and some progress. Thank you all for reading my rant and your support. Take care xx
Sorry you had to wait so long….. hope you have great support at home and get answers to any questions you may have.
I have the same and had very long wait times which was very stressfull 71 days from diagnosis to surgery doing nothing for those 71 days was awful. but i kept busy with work and organising the home and learning what I could. My MRI was about 8 days but had to insist on a earlier appointment.
71 days? That’s insane! I have just started the process but can always see nothing will happen fast, which is just horrible.
