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💗

@Lovewine1975 oh that’s so annoying when you gear yourself up for something and it doesn’t happen. At least not long to wait - hope it goes ok tomorrow.

@cantbelieveIamhere well done - first one ticked off! I’ll definitely be picking your brains in more detail regarding the cold socks and mitts when I get to my Paclitaxel cycles in a few weeks. That’s good that the district nurse is helping with the injections for now. Honestly, once you get the hang of it you’ll be fine.

I’m doing ok I think. The tiredness is still there but not as bad as it was. Days 3-7 were the worst, but I’ve gradually started seeing an increase in energy yesterday and today. I’ve had a few little niggles, sore mouth ulcers, a bit of diarrhoea (sorry tmi), temperature a bit up and down, but nothing alarming. Just got to take one day at a time.

@PoptartPoptart good to hear you are not too bad, some of the fear is which of the side effects you might get.
Did you see there was a tip about mouth ulcers - a spoon of manuka honey is supposed to help. We have it in the house for sore throats etc its antibacterial and tastes nice.
Yes got the cold socks and mits from amazon, make sure you get the right size. We bought a small cool picnic bag to keep them in (if you have some ice blocks to put in that will help keep bag cool) and they lasted more or less for the hour needed though I think they are designed for half hour, anyway its definitely not as cold as the cold cap but pretty intense, however worth protecting your hands and feet and I only did it for the hour of the chemo. It does mean you cant do much while treatment is going on but I took socks to put on afterwarda and blanket round my middle it was fine.

Both sons have been ill, one is recovering and the other just coming down with a cough so I am under attack here.
Drains playing up and we have had to have dino rod round today, at one point we thought we were back on portaloo but no thank god but we do have to have water company round to see to drains properly.
Other shitty stuff in life should not be happening when you are dealing with cancer!

I have appreciated your updates, its some comfort isnt it to know that we are processing all this menacing at the same time. Lots of women in the unit yesterday but also a few men, even one cold capping!

hope you have a good restful weekend, I have been up since 3.30 am must be the steroids. Did go back to bed at 9.30 but only for a couple of hours and didnt really sleep. Will be missing my wine tonight.

@cantbelieveIamhere thanks for the tip about the Manuka honey, I do have some I think in the back of a cupboard somewhere.

Sorry you’ve been up since the early hours - it’s definitely the steroids. I was exactly like that for the first couple of days. I felt wired, but then by day 3 I just crashed and slept constantly.

I know what you mean about other annoying ‘life’ things going wrong. The door shelf in the fridge just completely gave way earlier - completely out of the blue - milk and smashed sauces all over the floor! I mean WTF?! Also my grown son has some sort of ear infection so I’m trying to keep away from him. It’s so stressful isn’t it? As you say, as if cancer isn’t enough to deal with on its own.

Also missing the wine tonight 😢
I’ve taken a strange liking to Lemon Barely water of all things! I also might try a ginger ale and ice to trick my brain into thinking it’s a whiskey and ginger 😃

Hope you manage to have a relaxing evening

Popping in to wish @Lovewine1975 all the best for the picc insertion tomorrow. I had mine over 16 chemos and various bloods, it was a real friend to me (except at shower time, aka cling film wrapped arm!).

Just an update on getting my picc line fitted, it all went well and as a few people said I couldn’t feel a thing. The nurses were so lovely, I had got myself so worked up about it they really looked after me. I was only in there for about 15 mins the procedure doesn’t take long at all and the worst bit was the anaesthetic once that’s in I felt a few pulls but that was all, its all wrapped up on my arm now with no pain afterwards! Now full steam ahead for my first chemo on Friday 😊

Yay, well done @Lovewine1975 😊

@PoptartPoptartthanks, and glad your doing ok as well xx

@Lovewine1975 Good to get that done, the nurses are lovely with us arent they.

Well done @Lovewine1975 I found it helpful to “hug” a pillow at night whilst mine was settling.

I’m back off to see my specialist tomorrow to discuss Ribocyclib, which they’ve offered to me to supplement the anastrozole I’ve been on for a few months. Extra protection. I do wish all this nonsense had gone away after chemo but I’m pleased for science and ongoing protection.

@cantbelieveIamherethey are so lovely really good at calming people like me down!

How have you been feeling today, did did steroids wear off?

@dancingwhilstfacingthemusicI was wondering how I was going to sleep tonight so will give that a go! Hope things go ok with you at the specialist tomorrow

@Lovewine1975 i also had another pillow running down my spine to lean on - one either side of me to lean back on or into. I still find it comfy now as my reconstruction (implant) can feel a bit strange at times. Thanks for the good wishes.

Good luck with your specialist today, @dancingwhilstfacingthemusic . How do you feel about more drugs?

I'm still waiting to hear from my team if they want to further investigate my persistent back pain. Surgeon last week seemed quite concerned 😬

@Lovewine1975 I seem to be on the same path as @PoptartPoptart day 3 which was yesterday was shocking.
Bed most of the day. Then of course lovely district nurse jabbed me.
Today slightly less bad but feel sick and have had to take both anti sickness and anti other end tablets.
Not going to lie I feel like shit and am wondering whether its worth it today.

sorry not positive post

@cantbelieveIamhere I’m so sorry you’re struggling. It is absolutely shit and we’re allowed to moan and feel sorry for ourselves. We can’t always be upbeat and positive, some days are just hard 😢

I hope you can manage to rest and the tablets kick in and do their thing.

One thing I am struggling to come to terms with is that this is now my ‘normal’ - not knowing how I’m going to feel from one day to the next, not being able to make definite plans, etc.

But… also trying to keep perspective and remember that this is just a bump in the road. Hopefully we can all look back in a few years and think wow, did that really happen?! (a bit like when I think back to Covid / lockdown etc). It was horrible but we got through it and hopefully we can say the same about this shitty part of our lives too xxx

@cantbelieveIamhere oh don't apologise for not being positive its unfortunately the realities of chemo and this horrible cancer journey we are all going on. Not much advise to give just look after yourself, take it easy and hopefully the side effects will slowly start subsiding x

Thank you @BatshitCrazyWoman It was a fairly brutal appointment, although the consultant was kind and professional. The treatment is going to put my cancer and experience "in my face" as I have to attend the cancer centre for bloods every month, then take the drug with its long list of side effects for 3 out of 4 weeks. I'm grateful to have the opportunity for this additional protection but cannot believe that I am here - 18 months ago life was ticking along without too many worries. I must admit, I sat there and quietly cried as the consultant read the list of side effects and cautions. Some days, it's all too much. I have to attend a group "onboarding" training and then will be issued with the drugs if my bloods and ECG have been ok.

She did issue me with some drugs to help to counteract sleep difficulties/ hot flushes. I'll give them a go but to be honest they're currently in my handbag - I need to read the function and side effects.

I realised that my wellbeing had taken a bit of a dip and took myself off to swim, which has helped.

Big hug, @cantbelieveIamhere , we are all totally "allowed" a down day or so and sometimes have to wallow a bit before we pick ourselves up.

@dancingwhilstfacingthemusic following with interest as I’ve had a “heads up” from my consultant that they’d like me to take ribocyclib once I get through treatment. Yay… You’re right, it’s all a bit much at times.

I’m having a week off chemo as my neuropathy is worrying my consultant. They may just opt to cancel the entire last round (3x paclitaxel) which tbh makes me nervous so i’m hoping we just skip this one and complete the remaining two.

Hugs to those feeling crap due to the chemo.

@MonOncle I’ll keep the group updated. She did say that trials show an additional 4.5% protection against recurrence.
I don’t know what I would do if I was still working in schools as there are so many appointments. After today’s appointment and bloods /ecg, she said that they’d get me back next week for a group induction. I did comment that I have work commitments which couldn’t be shifted, so hopefully it’ll work around that. I’m back next week anyhow for a blood test ahead of my zol infusion in December. I’m grateful to science, really, it’s just hard managing what is now a long-term health condition, particularly when friends seem to think it was all over with the chemo.

just been directed here from thread 2! I had my mammogram and biopsy on October 14th. I had an invite for appt for nov 4th but we were on holiday so tomorrow I will be attending the appt to see what this lump is. Trying hard not to overthink, DP has health anxiety so I’m actually finding it more difficult to manage him than myself. I’ll let you know how I get on tomorrow.

@LoudSnoringDog sending you lots of best wishes and positive vibes for your appointment. Whatever the outcome, please come back here and update us, I have found the advice and support on this thread to be invaluable x

@dancingwhilstfacingthemusic it's a lot to get your head round. And yes, people do seem to think 'oh breast cancer is curable' without realising all the treatment that makes that so, that goes on for years. And has side effects 😔 I keep seeing mentioned in various groups I'm on that we should find out our own personal percentage reduction in recurrence for any treatment. I've never asked that question.

@LoudSnoringDog I hope the appointment is good news.

I didn’t sleep great, wasn’t necessarily thinking about today but random vivid dreams that disturbed my sleep.
Those of you who have been through this experience, what will happen today? Will they just go through the biopsy results? Will they discuss options?
I see many posts about different types of breast cancer, if I do receive the news today that I have it, will I know what type? Sorry for so many questions

@LoudSnoringDog Incoming essay!

Each case is different, and consultants and hospital trusts vary.

Do you know who tour appointment is with? Have they mention you might want to have someone with you?

The general pattern seems to be confirmation (or not) of a tumour. The pathology may not yet be complete. But there should be an indication of hormone positive, or negative. This should form the base of treatment plan.

Depending on size and type, you may go straight to surgery, either lumpectomy or mastectomy. You will likely have radiotherapy post surgery. You may have chemotherapy between surgery and radiotherapy.

On the other hand, you may have chemotherapy as first stage, to shrink the tumour and then proceed to surgery.

There are many permutations. And things alter as they find out more. For example, I had a lumpectomy, the post surgery pathology indicated a change from initial treatment plan.

Hopefully, IF breast cancer is confirmed you will have an opportunity to discuss further with a breast care nurse who may be present when you see the consultant.

Write your questions down, so you have them there when your mind goes blank. Consider asking if you can record the appointment so you can listen again. Consider ditching health anxiety partner as the person who goes with to appointments. I found my (lovely) husband supremely not useful at times, he struggled with his emotions and I did not wish to engage with supporting him.

It’s all A Lot. And it’s not usually clear cut. This stage is really challenging, confusing and overwhelming. Random vivid dreams and lots of questions are all part of it

Lots of very good support available here

Sending love

@LoudSnoringDog like the others sending best wishes and hugs for your appointment today, this thread is fantastic for support so come back here and let us know how you got on x

Brilliant post @GrannyGoggles - I wish I had known all that before my diagnosis back in August.

In fact, most of the things I have learned has been through the wise words of the lovely people on this thread who sadly have too much experience of all this.