The waiting & the not knowing is terrible.
I was diagnosed in May & have been back n forth for many tests (which I still have pain from now) but told very little what was happening along the way, I hope you have had better contact with your team. I saw a consultant (seen 3 different ones so far) Friday & was very surprised to hear that I am having my operation on Monday. Hang in there hope you aren't waiting much longer
I am waiting to see the hospital I wanted to go to and time seems to be passing. I had my first GP consultation in May 22, it’s now July 22. This is the second time I have had breast cancer in the same breast but 19 years later. The only thing that’s changed is the tests aren’t as painful, nor were the mammograms. Last time it was fine needle aspiration (painful) mammograms like being in a vice so the core biopsies and new mammograms were a delight in comparison. They also gave the correct diagnosis. Last time they didn’t so I only got a diagnosis after the ‘benign’ fibroadenoma was removed. So last time it was six months delay. This time I am only up to 3 months so far
Thank you. In regards to my next appointment, which is to discuss/plan immediate reconstruction, I’ve had the date for a while, my oncologist would’ve preferred it sooner to tie in with when my SLNB results came back but the other (plastic) surgeon involved was on leave, so it literally couldn’t be any sooner and the appointment I got, for about 10 days after he returned, was the soonest they could do. I am an assertive person and have no issue querying things usually, but everyone’s ‘hands are tied’ in regard to anything happening faster.
I will phone my BCN on Monday to ask for an update on my mastectomy date. My onc said he was booking the theatre time in the meantime to save further delay (as they advise theatre time is harder to book during covid) rather than wait for the other surgeon to return. If this hasn’t happened then I really will be upset.
The waiting is just interminable, isn’t it? Like you I found it very unsettling to read of others receiving timely and efficient treatment whilst I appeared to be languishing in some no-man’s-land with no sense of urgency in evidence at all. Checking the NICE guidelines I appear to have either missed the target deadlines for treatment, or squeezed in by the skin of my teeth. And my experience is largely pre-Covid...
Referred to the Breast Clinic under the 2 week rule in October last year, it was four weeks before I received an ultrasound and biopsy. I then waited an agonising two and a half weeks for a follow-up appointment, biopsy results and diagnosis. A SLB and mastectomy without reconstruction followed 3 weeks later. So, 9 1/2 weeks from referral to any active treatment. That’s 9 1/2 fraught weeks, as I am sure you know only too well. The one sentinel node removed was positive, despite ultrasound suggesting otherwise, and I then waited a further 8 weeks for a full axillary lymph node clearance. I have never received an MRI scan, although I had thought that was standard procedure with lymph node involvement.
I really hope that your treatment gets going soon. You will probably find everything snowballs and gathers momentum once things get going. The Covid situation probably hasn’t helped your situation but try not to worry about the effect of the pandemic on cancer services. You are securely in the system, you have not been forgotten, and your team are being reassuringly thorough. Try and go with the flow and concentrate your energies on things that you can change, rather than stressing about things that are out of your control. Leave the worrying to someone else. Easier said than done, I know, but that’s what I would have told myself last year with the benefit of hindsight.
Stay positive and good luck!
Please do phone the number on here and ask for some advice also ring your unit and tell them your concerns with delay in starting with your treatment and see if someone can give you some answers and solid dates and also take it to your trusts pals team if the response you get from your team is not satisfactory. You do what you need to do for you ❤️ 💕💕✨✨Shi xx
I realise the BC diagnosis and treatment wheel turns slowly, but I keep reading on here that most people diagnosed at similar times as me have had ops and/or are getting treatment underway. I’m pleased for others of course, and I’m not by nature an impatient person but I feel the wait for me is so long, I’m getting very down about it now.
Things seem to be ticking along at my hospital so I don’t feel it’s specifically Covid related delays. My recon surgeon has also been on leave for two weeks, but even without that it just seems so long? I’ve added my timeline for comparison, it won’t help me I know 😊, and I also understand everyone’s treatment path is different, but there will be some similarities and I’m just curious to know what the average time from diagnosis to (main) operation is?
3/6/20 Referred to breast clinic/Onc
22/06/20 Breast clinic (u/s, biopsies, mamm)
1/7/20 Diagnosed (telephone cons)
15/7/20 Results given in clinic, 2 separate tumours in right breast, IDC gr 2, Er+, HER2 neg. Mastectomy advised. SLNB planned. Possible rare tumour type to be ruled out, further needle aspiration.
27/7/20, needle asp test, negative.
12/8/20 Results (By phone), nodes clear
26/8/20, Appt booked to discuss/plan immediate recon (delayed as surgeon on leave)
? Mastectomy, date tbc.