I (46 year old) was first diagnosed in 2022 with breast cancer in my right breast. I had a WLE and had no node involvement, however on operating they found that the cancer was bigger than expected (103mm) and I also had DCIS so just over a month later I had a mastectomy. It was followed by chemo, radiotherapy, herceptin and letrozole. At my follow up in December I was just put on annual checks instead of 6 monthly. About 3 weeks ago I noticed a hardening in my left breast. It feels very similar to my initial cancer. Obviously at first I doubted myself thinking I was just being paranoid and that it was just dense tissue so kept an eye on it, last weekend I asked my hubby and he felt something too so I thought I had better get it looked at. All the time thinking I was just being over cautious and certain it would be nothing. Anyway, GP felt and found it and has again referred me via the 2ww. I am now going out of my mind.
It’s been a week and I can’t stop thinking about it, I’m alternating between I’ve been here before and I can do it to thinking about what songs I want played at my funeral and all sorts of random stuff in-between.
I know that the waiting is the hardest part and that as soon as I have the appointment I will be fine and can deal with whatever, I just can’t sleep and wondered if anyone can give me any advice or positive stories?
Thanks
Hi my love, it is such a scary time. I was called back from my first annual mammogram in January after only finishing treatment in December. It turned out to be some scarring. I’ve now felt another lump and am waiting for a call back from my BCN so I feel what you’re going through.
What helped me through that first recall (after a few days of being a wreck) was reminding myself that I was on treatment still, I’d had chemo, it was unlikely (although I appreciate still possible) to be cancer again, they will be keeping an extra close eye on us, keeping very busy and if it was the worst, it had been caught early.
Fingers crossed for you x
Hi @onetit
Understandably this sounds like a lot to digest and I’m not surprised you can’t stop thinking about it. Please know that we’re here for you and I hope you find encouraging support on the forum. Should you find yourself wanting someone to talk all this through with then please do give our nurses a call on our helpline 0808 800 6000
My heart goes out to you, the waiting is so so hard. As Kevin has suggested, maybe call our nurses on this site, they are so caring and very understanding.
Wishing you well, with lots of happiness going forward.
I’m sorry to hear you are feeling anxious but it is understandable. I’m surprised your team didn’t say you could contact them direct. I’m in South Wales and I have access to the Breast team direct for life. They said to call them about any worries in the future bypassing the GP. So, if you have the number of your breast care nurse, give them a ring and they may be able to speed up your appointment.
In the meantime, the BCN nurses are there to talk to as already mentioned.
I had bi lateral lumpectomy (WLE) and have had very lumpy boobs ever since. I have recently been told I should have massaged the scars as soon as I was signed off after surgery but the physio didn’t tell me this. I had a very uncomfortable annual mammogram last year and commented to the radiographer and nothing was said. I was referred to a cancer physio who showed me how to massage my boobs and scars and it has really improved the feel of them, hoping this years mammogram will be less uncomfortable. On the forum someone suggested Jen McKenzie The Breast Cancer Physio on YouTube who has great advice. I can post a link if you think it may benefit you.
Hi,
So sorry you have found yourself in this waiting game again, it really is awful (I found it the hardest time).
Try to look after yourself as much as you can, do nice things for yourself and see friends/family if that feels good / distracting for you.
As naughty_boob mentioned, contacting your breast care team from your previous treatment may be another route worth exploring if you feel up to it.
Your GP may also be able to help with the short-term anxiety related specifically to the waiting period, and as others have mentioned, the BCN team of nurses are available to chat to.
I hope the time passes quickly for you.
Take care,
Lisa x
Thanks Everyone for the comments. Really long post but I have had an awful day, I was really expecting a letter today or tomorrow with an appointment later this week.
What I got was a text message from the NHS saying sorry for the delay thank you for your patience which knocked me for six. That clearly means I’m not getting an appointment anytime soon. So I rang the GP to ask if I could be referred to another trust, they gave me the waiting list number and when I rang I was told it could be another 3-4 weeks due to consultant sickness and the backlog.
I just cried… I thought I can’t cope with this so rang the GP surgery back. Receptionist was lovely (same one as first phone call) so she said she would speak to a doctor about referring to another trust but the 2 week wait would start again. I said just do it, I don’t mind where, I just need an appointment. So baring in mind last time I had stage 3 cancer, I’ve already waited a week and I’m getting next to no sleep. I got off the phone in tears and my colleagues said what about right to choose, and can you go private, so I thought ok instead of phoning the surgery again and the receptionist thinking I’m a paranoid hypochondriac I would go up and see if I could speak to someone at the surgery and find out if I could do a right to choose pathway. Saw the same receptionist and she was amazing, but according to the secretaries right to choose doesn’t apply here it’s more for like ADHD assessments and things, but she would mark the request urgent and only ring me back if she hit a problem.
Yep so many things I am upset and angry about with this situation today but by the time I got back to work the receptionist had rang me back but I missed the call. I rang her back feeling like an absolute loon and apologised for being the person on the end of the phone every time it rang this afternoon, she laughed and said it’s ok, I have good news I’ve got an appointment on Sat 5th April at the QE hospital.
So while I’m utterly dissatisfied with the Cddft and don’t know what to believe about the right to choose stuff, I am relieved to finally have a date for the appointment.
As others have said, why not try your BCN? You should have direct access to them for 5 years after diagnosis, it may have been a quicker route. Glad you have less than 2 weeks now, however, you may have saved yourself some GP-hosital slower liason stress.
Yeah, I possibly would have but I was discharged from the breast care nurse team last year so didn’t think about them. I did ring my consultants secretary direct but she said I had to go back to my GP for a referral as they treat it as a new primary cancer.
It just seems like such a faff, especially considering I am still under his care.
Anyway, here’s hoping the next 2 weeks goes over quickly. X
It’s no wonder you are upset at the delay - a call or something from the team with an estimate of date would have been better than a vague text at least. I don’t think anyone who hasn’t been through it realises how awful and stressful this waiting part is.
You did the right thing following up, although it sounds like it was really stressful at least you have a date now and hopefully the rest of this time will pass quickly.
In the meantime, we are all here for you to rant at, cry at, whatever you need.
Keep us updated if you feel you can and we are all keeping fingers crossed for you.
Thanks Lisa, I think having somewhere to vent really helps. LI ended up having to tell colleagues yesterday which I didn’t want to do as I know they will worry.
That text really did just push me over the edge. Like you say a phone call would have been so much better.
Usually I would just wait and not want to be pushy or bother someone, but I’m pleased I did.
Hopefully today will be a better one.
I’m sorry you have had so much trouble but pleased you now have a date.
I know you mentioned you were signed off/discharged from the breast team, I have been as well, but was told to go to nurses direct with any issues. If you have their number, I would give the nurses a call even if the oncology secretary says it’s treated as a new referral. The nurses bypass the bureaucracy and book you an appointment direct with the team.
Please rant as much as you need we will be here to hold your hand.
My heart goes out to you, I can remember this part of my treatment very well, waiting, worrying, stress and anxiety all in a big bundle together we make telephone calls and think we are going mad, everyone is so kind on the other end, but we are still pulling our hair out, and just want to settle the situation.
We are all here for you at any time, fingers crossed for you that everything falls into place soon.
I had a WLE and just under a year later i had 2 areas of concern. It turned out to be fat necrosis. I had the same worry as you. Fingers crossed that you have a good result
Hi everyone,
Just a little word of thanks to you all, I’m still patiently waiting, only 5 more sleeps until I (hopefully) find out what I’m dealing with.
I will update you all after my appointment.
