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💗

@cantbelieveIamhere re number of injections, I understand it depends on your level of neutrophils. Sometimes I had 7, sometimes 5, once just the 3 x

@AlwaysALargeSauvignonBlanc thanks so much for that advice its really helpful,
today I have been in bits my poor husband seeing me in tears saying I cant do this, bless him. Just need to have some quality of life inbetween shittier bits and so far I have had one day out of 6 which is not on.
Truly thank you

@dancingwhilstfacingthemusic This is what I have but on abemaciclib, all the bloods tests and to and fro hoping they have my tablets in the pharmacy. After 3 tests in a row of white blood cells being ok they reverted me to blood tests every three months. Tbh, I don't bother with my temp anymore, if I feel a bit off I check it. I don't know if your tablets are the same, but I had to have a dose reduction because I had a bad reaction to them in the summer, after about 9 months on them out of nowhere. This involved a blood test nearly every day for 2 weeks 🙃

Good luck with them!!

@SunnyValemin thanks thats useful info too, I guess the blood work tells them that info.

thank you for responding its appreciated

@cantbelieveIamhere no worries, it's crap isn't it. I didn't have the bone pain with the injections but I did on paclitaxol, I couldn't move with it it was all down my leg bones. Hope it gets better for you (I'm about 15 months past finishing hospital treatment now) x

I didn't realise there was a new thread. I just posted on the old one:

I've got to go back to the breast clinic on Monday because I feel a bit of a lump right at edge of my breast against my ribs. The breast nurse said over the phone it was most likely muscular given the position, and to ask the breast cancer physio to look at it at my upcoming appointment. Physio couldn't say 100% that it was nothing. So back I go.

Great to see you @AlwaysALargeSauvignonBlanc ! Amazing that you’ve finished chemo, congrats!!

Welcome @OMGitsthebigC @Snoopy1612 @LoudSnoringDog , sorry you’re joining us, this is a wonderfully supportive place whenever you need it.

@MrTiddlesTheCat gosh you’ve really been through it. Fingers crossed it’s nothing.

Big hugs for everyone having a tough time.

I saw one of the consultants today to discuss my neuropathy and whether I should go ahead with the remaining paclitaxel round and we’ve agreed to do two more weeks and I can always call off the last one if I want to. I’m happy with that so I’ll go for my bloods tomorrow and chemo on Tuesday.

We also talked about next steps, so I’ll also be starting zoladex, letrozole and ribocyclib. 😥They’re going to introduce them gradually, starting with the zoladex, which was good news, I was worried about being hit by a bunch of shit side effects again.

Sorry, also a note re counselling, it may be available! I am currently receiving fortnightly clinical psychology sessions run through the oncology centre at my hospital. I was initially referred by my breast nurse when I was at the surgery stage and it took a while to start (I’d started chemo by then so it was months later), but they’ve been brilliant. They also run a family service so my husband should be getting the opportunity to have some sessions too. Worth asking about if your hospitals offer the same, I was/am really struggling and it’s been beneficial.

Hi ladies, I’ve been reading your posts with interest. I was diagnosed with bilateral cancer in Nov 2023 (9 days to go before my 2 year anniversary!) and underwent 4 surgeries, 6 months of chemo and 3 weeks of radiotherapy, all of which I completed in Dec 2024. I’m now on tamoxifen (1yr or 10 done) and abemaciclib (9months done, 15 to go!).

i just wanted to say that almost a year post active treatment it has all become a thankfully distant memory. I’m back at work and while life will never be the same it has returned to what is now normal.

one of the things that really helped me was having some therapy. If you have a Maggie’s near you I’d highly recommend contacting them, at whatever stage you are at. They are a free organisation offering support for you and your families and I found them to be excellent. I have 1:1 therapy and group support sessions and am still in touch with the ladies i met through that process as our own group of buddies.

i’m happy to answer any questions you might have and share my top tips for different stages of treatment if anyone would find that useful?

sending you all love and strength xx

I agree about counselling. Ive been seeing one at the hospital all the way through. My health service really encourage it, especially for women with young children.

I have had a few counselling sessions (not free!) with a psychologist which has helped me enormously. In the first session when I told her I had lost my Mother, had a double mastectomy and lost my family dog all within 6 months, she kept saying, in her very New York accent. 'Thats a LOT '. She also reminds me of Seinfeld characters because she often says 'lemme ask you something'. She's good and clearly takes good notes because she always remembers the details. It does help to lay it all out to someone, not just about the cancer and treatment, but the impacts on work, family, marriage. It is indeed a LOT.

Did @TheStarsAreComingOutcome back after her biopsy results? She posted a few days before me? Was wondering how she got on.

my tearfulness yesterday was obviously premenstrual. I had my first “natural” ( ie not a pill break period) start today, so that explains my emotions yesterday.

Here to join your club.
Biopsy results yesterday.
Grade 1 Oestrogen and Progesterone positive. HER2 negative.
Waiting for an appointment now to see surgeon.
Feeling all over the place at the moment.

Was a bit upset yesterday - but upbeat. Proper anxiety today.

Work is supportive (but I'm right in the middle of a big project right now)

Like @Bitofashock I also have UC and have been on immuno- suppressants. Dont know what to do about that. The UC team are a different health care trust to the ones that'll be doing the surgery. So I'll have to juggle those teams and my GP via 3 different apps.

All of which should work via the NHS app - but they don't...

What a palaver...

Hi all back from my first chemo, and have to say that their was nothing to worry about it was fine. It took about 4 hours, so glad I had my Picc Line great for the chemo and other meds. And I did cold capping which honestly I didn’t find that bad at all, bit of a headache at the beginning but after that it went away it was just cold. All the nurses were so lovely and really looked after me being my first time. At home now feel weird slightly spaced out and full of energy, apart from that I’m fine, at the moment anyway might be different tomorrow! x

@Lovewine1975 so glad it went well for you! Your first one is officially ticked off, yay! You must be so relieved 😮‍💨
The anticipation beforehand is definitely way worse - it’s the not knowing that’s scary.
I had my second session today and it was pretty much the same as last time. I’m now preparing for a couple of steroid high sleepless nights!

Hello all.

Just checking in - thanks to @SpartanRunningGirl for the new thread. Have been AWOL for a few weeks and just caught up on the end of the previous thread.

Best wishes to all as I catch up here.

Hugs to all who need them, dealing with this shitty disease.

I can't remember who was having bone pain, but Phesgo gave me awful bone pain, if you having that?

@MrTiddlesTheCat that is shit. I hope all is well 🤞🏻

I've been referred for a PET/CT scan because I'm having bad pain in my back (have never had issues before). So they're just checking it's not anything sinister 🫤

We have exactly the same diagnosis. I have my operation on dec 4th and radiotherapy in the new year

Sorry you find yourself here @KimonoQueen but you are very welcome.
I have had so much support and good advice from everyone and I’m sure it will be the same for you too x

@cantbelieveIamhere
So sorry to hear you’ve had a shit time of it with the infection and the bone pain. I found the Loratadine really helped, carry on with it anyway as it may kick in, won’t do any harm. Defo check if they can give you some nice opiates such as cocodamol or Oramorph to ease things a bit.

In terms of mental support- ask your BCN if you can be referred to psychology. Some trusts offer this it’s worth an ask.

There’s also a service offered by Breast Cancer Now called “someone like me”. They pair you up with a volunteer who is well matched to your diagnosis and circumstances. The volunteer has walked/is walking a path similar to you in stage and treatment and they call you on an agreed frequency. I’ve signed up
to it and have a fortnightly call with my volunteer. She’s great because she knows exactly what I’m feeling and she guides me through coping techniques, ways to distract myself. It’s also great to be able to vocalise the feelings that I can’t vocalise to my nearest and dearest. Sometimes I just cry at the poor woman for an hour whilst she offers me a virtual ear and a hug. I‘ll post the link at the bottom. But defo check with your nurse if they offer psychology referrals at your hospital.

Welcome to the newcomers, sorry you’re here but it’s a really comforting place to rest your hat and talk through the worries.

Hope everyone else with scans coming up and treatments over Xmas are doing as well as can be and sending all the best wishes for results. I have an MRI on the 8th Dec (mid way point before starting 4 cycles of EC every 3 weeks). Absolutely shitting bricks over it.

Also have appt with surgeon on Tuesday. A random appt, not quite sure what it’s for so the uncertainty makes me twitchy!

My cortisol levels took a nosedive this week so they’re questioning adrenal insufficiency which can be caused by the immunotherapy. Hoping it’s not that as it’s irreversible and I’ll be on steroids forevermore. But I’ll take the forever steroids if it means continuing with the immuno, it’s my best shot.

Sending everyone peace and a relaxing weekend as much as possible ❤️

So apparently everything that has happened to me shouldnt have, I have been back to the unit and the nurses have arranged for me to see oncoogist before next treatment.
I have been constantly ill, in pain, sick, unable to eat, in fact projectile vomiting last night and I think I am having a bad reaction to all of it.

The injections have definitely been terrible for me, after every one, sick, pain, trotzky so am not doing them again.

@PoptartPoptart good to get second one done, at the moment I wont be doing a second one if its the same as the first one so stuff needs to be changed.

@Lovewine1975 well done first one is over, yes cold capping not so bad after you get past the first fifteen mins.

@cannaecookrisotto yes MRI nerves perfectly natural, wont we all be doing that at some point, its all very terrrifying. But imagine the good news coming!

I agree we do need some support but at the moment everything has gone wrong so its hard to guage how bad it all is. The nurse told me there is no way I should have been in such a state for all this time and said of course you are not going to go through that again they will look at reducing doses or something, we will see.

Sorry my posts have been bad but I guess people need to know that sometimes you are going to react badly to it all, and if you dont tell the unit then it will just happen again, so let them know whats happening to you dont assume its normal if you feel terrible.

.

@cantbelieveIamhere that all sounds so horrible for you. They definitely need to manage your side effects better, reduce dosage, whatever it takes, because you definitely shouldn’t be suffering like this. Keep us updated and let us know what happens.

@Lovewine1975 how are you getting today?

@cannaecookrisotto good luck with your appointment on Tuesday - let us know what happens.

And best wishes to everyone else with upcoming appointments / results / treatments this week. Sending positive vibes and love x

@PoptartPoptartI’ve been surprised at how ok I’ve felt, no nausea and a little bit of tiredness, got my first injection tonight so see how that goes! How have you been?

@cantbelieveIamhereI can’t believe what a rough time you’ve had of it, glad the nurses are going to get it sorted for you and you’ve stopped taking the injections

@cannaecookrisottohope your appointment on Tuesday is nothing to worry about x

And sending best wishes to eveyone else on here, seems to be a lot going on at the moment everyone at different stages xx

@Lovewine1975 I’m doing ok I think touch wood. I feel pretty much the same as last time. No real nausea to speak of as long as I religiously take my anti sickness meds.
I’m on a steroid high at the moment so not getting much sleep, but that will probably only last until Monday, then the pure exhaustion sets in and I sleep a lot for 4-5 days.
I did find last time that after a few days, if I allowed myself to get too hungry I started to feel sick, so I spent most of the time just grazing little and often. Also, I drank loads of water to help flush the chemo out - about 2.5 - 3 litres a day.

So glad your ok so far - long may it continue 🙏

@cantbelieveIamhere How are you doing now? I’ve been thinking about you and hoping they managed to get your side effects under control?

@Lovewine1975 Hope you’re going ok too after your first chemo.

And best wishes to anyone else this week waiting for appointments or results.