Likely breast cancer after ultrasound- thread 3

[SpartanRunningGirl]

Welcome. Previous threads :

Thread 1
Thread 2

The original thread was started after I had a mammogram recall and was told at the ultrasound that it was likely I had breast cancer - before biopsies were taken, and before I was ready to hear that (if you are ever ready to hear that).

Two full threads later we are still sharing support, experiences, and advice. We’ve celebrated breast cancer wins and thrown virtual hugs around those who’ve needed it. (We’ve all needed it 💗)

This is a hugely kind and caring bit of Mumsnet - where we’ve all felt that awful fear waiting for scans, tests, results, or with an early and uncertain breast cancer diagnosis.

You are not alone.

This is the awful club - full of awesome women💗

I am utterly gobsmacked tonight. The surgeon has just been to my home (he phoned first for permission) to apologise for the error in processing this and to hand me a month's supply of Letrozole so that I can start treatment tonight. Not because ia few days is likely to make any difference clinically, but because he knew I would be worrying and might feel better knowing that treatment had started. How impressive is that? He isn't even my surgeon; he's just covering while the one taking my case is on leave.

@nonevernoteversorry to hear you’ve had to join the thread. That was definitely excellent service.
I also had an issue with getting my first prescription for letrozole. At my first onco appointment she gave me a form to take to my GP to set up the prescription to run for 5 years, starting after I finished radiotherapy. I handed it to reception on 16th October and 4 weeks later it still hadn’t been sent to my nominated pharmacy. After a phone call it was ready for collection the next day. Not that I’m happy about having to take it of course, having spent nearly 3 years on HRT.

@nonevernotever that’s amazing. What a dedicated doctor.

Welcome and that is brilliant (well, in relative terms) @nonevernotever .

Can I please say a giant AAAAAARGHHHHHH this evening?

Went to the consultant app't today to get HER2 results and establish whether chemo is needed before surgery. Dr's secretary booked this on the basis that results were in. Are they in? Are they fuck. Or rather, some are in but still waiting for FISH, which is something specific in the world of HER2, if I understand correctly.

Back to "thing growing inside me, I'm waiting, I don't like it", with potentially added Christmas waiting on top. And a tiny sense of paranoia that going private has slowed things down because the NHS would be running throughout. Which I expect is insane - my first app't in relation to this was 1 December and I have been mammogrammed, ultrasounded, MRI'd, biopsied x 10 and met a plastic surgeon. So I think things are moving quickly - but I still feel so frustrated. I'm a planner by nature, and I can't £$%^ing plan.

Consultant was fine on double mastectomy, which is (at the moment) my choice. Will need a psych app't and potentially further delay but he wasn't dismissive or shocked. Will gather photos/questions re flat closure before next appointment.

Sending love this evening. It's Hanukkah for us, so if nothing else the kids are occupied and happy. And doughnuts are available.

We're on similar timescales but I'm with the NHS. My first appointment was 28th November and was mammograms, ultrasound and biopsy. Second appointment where the diagnosis was confirmed was 11th Dec - it took 2 weeks for biopsy results to come through. Had CT scan on 11th Dec. Also saw a plastic surgeon on 11th Dec, but that's only because her surgical list was cancelled at the last minute so she booked up an outpatients clinic. My CT scan was clear so now I'm waiting on an MRI and psychologist appointment. I've been provisionally pencilled in for early February for single mastectomy and reconstruction. If I wasn't having the reconstruction then surgery would be a lot sooner.

That’s interesting to read, thank you very much. Can I ask, why a psychologist in your case? In mine it is because of a requested double MX when cancer is only on one side.

Wishing you well with it all.

It's due to the reconstruction being major surgery. It's an 8 hour operation, 3-5 days in hospital and 10-12 weeks off work. I'll be cut open from hip to hip and tissue and blood vessels taken from my stomach to rebuild my breast. They want to make sure I understand what I'm going to put myself through.

Interesting! I had a plastic surgeon appointment and learnt about what reconstruction would entail - but decided against. Interesting that it also entails psych evaluation.

Lumpectomy booked for 23rd , bit nervous but just want it done now. How long do you think for recovery / being able to drive, sleep ok, lift stuff?? I’m just worried about being back at work in the new year.

I had my lumpectomy and sentinel node biopsy on Dec 4th. I’m still in some discomfort. I don’t think anything could have prepared me for the mental drain / emotions I am feeling post op. I have crippling insomnia ( hence being awake now). I can’t get comfortable at night. I have awful nerve pain from the sentinal node biopsy, my GP has prescribed me some amitriptyline for this but that made me feel like a zombie.
is your job desk based or manual? I am desk based and I can’t imagine being able to get back to it for a couple of weeks yet. I am floored by the afternoon.

@cannaecookrisotto I’m so sorry to hear all that but very pleased you are home now.

It’s all so unpredictable isn’t it and just when we think we’ve got this chemo malarkey under control it comes and bites us in the butt again.

Great news about your tumour shrinkage though..

I also had a couple of trips to A&E this week and spent the day there today on IV antibiotics due to my temperature spiking. Thankfully they’ve sent me home with oral antibiotics and I didn’t need to stay in, but it made me realise just how quickly things can change and how vulnerable we are 😢

My lumpectomy has been rescheduled now for 13 Jan.
I've asked Chatgpt what I can do to prep for it. Apparently trying to drop 5 stone is not recommended. But it did come back with top tips for pre hab which I can achieve.

There's a load of other emotional stuff gong on at home - so I'm just going to try to focus on what i can actually do in the next 4 weeks.

I'll keep lurking on the thread as its very helpful.

I'm finding it helpful too. It's the waiting that's hardest. Every time I think we have a clearer picture/dates when I might know, things get pushed back. So I've had the initial appointment, ultrasound, 3d mammogram and biopsies but because the (hopefully) little bastard is lobular the consultant appointment to talk about results and treatment plan etc has been pushed back from next Tuesday until after I've had an MRI. That's not until 18 January so I've been told realistically it won't be discussed at MDT until 27 January. I'm terrified that every twinge means that it's already spread everywhere and just hasn't been visible.

@KimonoQueeni also had an interaction with ChatGPT. I found it very helpful actually. Reassuring about the evidence on waiting a few weeks not impacting outcomes. I am really trying to focus on what I can control. Today I plan to do some baking for DD coming home for Christmas. I haven’t seen her for such a long time and she loves my mince pies.

My next appointment is with the surgeon on 8 Jan. May as well try at least to enjoy Christmas.

This is exactly me. Sending love. It’s shit. My consultant (saw on Friday for no bloody reason it turned out) said that the various twinges etc are normal and vv common, and not cancer spreading. In my case that bit of my cycle (so both breasts quite tender) + biopsy on that side is likely it. Message me if you ever want to chat more, I’m also in full waiting mode and hating it.

ohdoriswheresthesalad
Do you want to PM me ahead of tomorrow??

Thank you I will do I’ll go on the desktop site

Sorry for the epic post - I’m looking for some collective wisdom please ladies..

Has anyone had problems regulating their body temperature?

One minute I’m cold, as in freezing cold hands and nose, and the next I’m boiling hot and having to stand outside in the garden.

I don’t know if this is a normal side effect of the chemo?

I’m 48 and hadn’t had any signs of menopause prior to chemo, but I’m wondering if chemo has triggered something because I’m also having night sweats.

A few nights ago I was feeling particularly hot, so took my temperature and it was 38.

Chemo hotline said A&E, so off I went. By the time I got there my temperature was normal again.

This happened again the next day, so back to A&E and this time they started me on emergency IV antibiotics just in case and then proceeded with all the blood tests, chest X-ray, urine sample, etc.

All tests came back fine! But they still sent me home with 7 days worth of antibiotics, just in case.

Just wondering if this hot / cold thing has happened to anyone else?

I also get a racing heart (although this could partly be anxiety induced).

It’s really worrying when I feel hot and keep seeing the thermometer read 38 degrees because I don’t want to keep running to A&E, but I also don’t want to miss anything serious.

Has anyone got any experience of this or advice please?

@PoptartPoptart I'm not on chemo. But a friend told me that temperature regulation was the worst symptom of theirs (brain tumour, male). I'm just in peri menopause variation myself

@PoptartPoptart yes I definitely had the temperature spikes, mostly hot flushes, but they only lasted a few minutes at a time so I never thought to take my temp. If yours are more long lasting it’s probably better to be on the safe side.

Is anyone else having ovarian suppression? I had my first jab roughly three weeks ago and my joints have been so achy the last few days. I didn’t have this during chemo at all, despite having other meno symptoms. I thought it might happen once I start letrozole but surprised I am getting this side effect already.

@PoptartPoptart it could be a combination of chemo and possibly peri menopause as night sweats and feeling generally hot are a symptons of peri menopause. I get the worst night sweats and then once they have gone I'm back to normal temprature. I've been PM since I was 47 (50 now) so your at the right age for it to be starting, might be worth going to the doctor and speaking to them about it?

@FcukBreastCancer @MonOncle @Lovewine1975
thank you for your replies. I think I will explore the possibility of peri / menopause symptoms.

It’s so frustrating because I had all the tests at the hospital and they were all clear. I’m on antibiotics as a precaution. I don’t feel ill - just anxious. Yet my temperature is still saying 38

I had it years ago it didn’t give me joint pain but I had awful pains when I’d just finished taxol and they lasted quite a few weeks.

Oh interesting! Thanks @Nonamelass , I won’t despair just yet.