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💗

Hi all, just popping a comfy chair into this sparkly new thread whilst posters finish up the old one. I'm also known as Bimblesalong, which I somehow logged in on the previous thread.

A year today, I started my chemo treatment (16 cycles, 12 pax, 4 EC). This was after two lumpectomies and a mastectomy. Dad died just after my first op. With my black humour, I'd say there is a film title in there somewhere.

I'm now navigating life after treatment, the emotional cliff edge and the ongoing joys of aromatase inhibitors (my cancer was hormonal).

Keep buggering on everyone. Crap that we're in this club but we have some awesome people to navigate this nonsense with.

I'd like to join this thread if it's okay.
Was diagnosed with stage 3 ++- lobular in November 2023, had lumpectomy chemo and radiotherapy and then summer this year had recurrence to the outside of my duodenum, kidneys and bowel. Spent three weeks in hospital unable to eat.
Did my sixth round of 24 lots of Paclitaxol yesterday and I don't even feel like I'm on chemo. My digestive system is pretty much fully functioning agaim (apart from some sensitivity to what I eat but I've been told that's to be expected) I have no real side effects and my oncologist is thrilled with my progress. I'll have a scan in a few weeks to check but she's said show I'm feeling is the biggest indicator the chemo is working so I'm praying she's right and we'll see some progress.
I feel like people hear stage 4 and assume you're on deaths door but I wanted to share this as every professional, even when I was first diagnosed, told me "it's not a death sentence nowadays." My current oncologist has compared it to diabetes and said it's a chronic condition that I can manage and keep stable for a long time (but I've told my nurse I'm aiming for NED).
I hope this gives others some hope. I do have my down days and the occasional wobble but I just try to remember what I've been told by the people who know a lot more about it all than I do.

Morning everyone. I was diagnosed in April having retired that day! Have finished 6 rounds of chemo and Phesgo. Carrying on with Phesgo. On trial
to remove the lymph node affected only. Having MRI on Saturday and then team will discuss what surgery I will have. Then radiotherapy. I’m really hoping for this mostly to be done before Christmas and that next year will be better -for all of us 💐

Just checking into the thread no one wants to be on.

I was diagnosed with triple positive breast cancer at the end of August last year. I've had 16 rounds of chemo, Phesgo (which was switched to just Herceptin post-op) finished a couple of weeks ago, lumpectomy in February, and 15 rounds of radiotherapy, finishing just before Easter. Like @dancingwhilstfacingthemusic I'm navigating my post-cancer world, plus endocrine therapy (tamoxifen for me).

Checking in on this thread to see how people deal with the waiting periods. I have been diagnosed with Paget's disease and DCIS on the 6th October and I still won't know anything more about next steps until 3rd November. Slowly going insane waiting for news.

Hey all! @dancingwhilstfacingthemusic you’re back to dancing! 🎉😁
@thegirlwithapearlthank you for this, I hope you are doing ok at the moment and I do tend to think of stage 4 as a death sentence and so hearing you story is very heartening.

@ChasingRainbows8this is the worst part, waiting for results and a plan to form. It is really distressing and minutes feel like days as time seems to slow down until you get to the appointment. I have no wise advice except hang in there and know that we’ve all been there too, once you have a plan you may feel more in control which is really helpful. X

Just popping in. I'm an old timer- diagnosed just over a year ago and had immediate double mastectomy. Very lucky to have had no chemo, but some ups and downs with hormone blockers. This time of year (spring in Australia) is bringing back lots of memories.

Just setting my hat down in the new thread.

Thanks all for cheering on my lymph nodes. It feels really strange getting “nice” results for once instead of shite news! At first I was still a bit worried that they’re showing negative because of my response to chemo, but my BCN was great in reassuring me that negative is negative. So even if it was there it’s gone now and that would also mean that the chemo is blasting its way through any cells that might have started on the move.

So I’m taking it as a win.

Old timer from thread 1 here! I was diagnosed Jan 2024 and finished hospital treatment last summer. On targeted therapies for now. My dad died just after my treatment finished quite unexpectedly. Checking in here now and then as I get on with life post hospital treatment x

I'm here as well, amazing place to be for support it what is such shitty time for us all 🙂

Also checking in. Thanks for the new thread @SpartanRunningGirl .

I was diagnosed in March (++-, grade 3) at 42yo, had surgery in April and I’m currently in the midst of chemo. I’m down 3 EC and 7/12 of weekly paclitaxel. Chemo feels relentless but the end is nearly in sight. I expect to have two weeks of radiotherapy around NY and then onto whatever preventative drugs they have in mind for me (I’m too focused on getting through chemo to give this headspace just yet!).

Big hugs to anyone new here. It’s bewildering and hard but this thread has been great for me when I’ve needed it.

I’m a veteran, dropping in to share a few things I wish I’d known; as others say, the wait between diagnosis and full treatment plan is a special form of torture. It’s is just to be got through as best you can, no right or wrong way.

The absolute dread 😬 of chemotherapy , yes, check that one. It was no fun, challenging, and I have no wish to repeat it. But, big but, I was so v well cared for at the oncology unit, well supported by family, friends and community, learned to ask for and accept support. And I did loose my hair (all of it, including nostril hair which was weird and irritating). But it was doable, loads & loads of side effects but loads & loads of drugs to mitigate and manage. My imaginings were worse than the reality.

Yes to the odd, dislocating post treatment period. Lucky me, NED, must be feeling great and ready to put it all behind me. Well, I am lucky, but you never unhear the words ‘You’ve got cancer’, the physical and mental toll is heavy.

It’s a weary road, with plenty of pot holes, traffic jams and detours. I remember Batshit, Dancing and Spartan when they were new to it all. Look at them now!

I’m almost 2 years out from a challenging year of treatment for TNBC picked up by routine mammogram. It’s now filed under ‘other news’, no longer a headline.

Wishing everyone Godspeed on this shitty road

Can I join too? I’m a long time mumsnet user, but have changed my name due to the fact I’ve told nobody irl apart from my DH.

I was referred to the breast clinic this week because I found a lump. After a mammogram, ultrasound and biopsy of lump and lymph node they said they strongly believe it is cancer. I get the official biopsy results on the 3rd. I feel like I’m on a rollercoaster of emotions.

It’s the half term school holidays next week and having to pretend everything is ok and normal for a week feels hard. At the same time I know I need to make the most of this time because I don’t know what lies ahead.

Spot on @GrannyGoggles and I’m rocking my amazing tattooed eyebrows thanks to your recommendation.

Your thoughts on chemo echoed my experience too.

@TheStarsAreComingOut so sorry you find yourself here, but glad you’ve found us, should things turn out the way the medics seem to think they will. Keep busy, do not google. You’ll share when you’re ready to, if things aren’t as you would wish.

@dancingwhilstfacingthemusic I think this is my problem at the moment - I’ve already googled and gone down a rabbit hole. I swing from thinking the worst, to thinking they are wrong.
I saw my ultrasound on the screen after they did it and wish I hadn’t really.

Hi everyone, just popped over from the previous thread 👋

I was supposed to start chemo today (TNBC) but due to some complications that I won’t bore you with, I’m now starting next Friday.

I’m not gonna lie, I’m absolutely dreading it. I’m in a state of constant panic and terror.
@GrannyGoggles - posts like your really help, so thank you.

If anyone else has any positive stories or anecdotes please do share them because I really need to hear that it’s not going to be as bad as I’m constantly imagining in my head.

I know this sounds ridiculous but I think I am more scared of the chemo and its side effects than I was of the bloody cancer and the operation.

@TheStarsAreComingOut I’m so sorry you also find yourself in the situation.
I know how it feels to have to put on a brave face and pretend everything is normal. I was waiting for my biopsy results in the summer whilst on a family holiday and it was hard because I knew it was not going to be good news. Only DH knew - the kids and extended family had no idea.

But in a way I think you’ll also find half term a good distraction as well. It’s good to keep busy and not allow your mind to think too much (because if your anything like me I always think worst case scenario).
My advice would be to get out and about as much as you can and keep busy.

@PoptartPoptart
I’m TNBC but having chemo first and surgery after due to twat lump being 9cm initially. It’s about 4cm now and I’ve done 6/12 PC plus Pembro.

It really wasn’t as bad as I was imagining ❤️. I was imagining like the films with my head down a toilet all day really sick and laid up on the couch.

I’ve had virtually no side effects apart from feeling a bit tired on Saturday and Sunday (my treatment day is a Weds). I’ve been cold capping too and not lost any hair, eyebrows or lashes.

I drink a shite load of water every day but still able to work (from home), look after the kids (8yo and a 6mo old). I’ve given up on housework, that’s DHs job now :).

Any side effects - communicate to them and they can switch up your meds to help combat them. Don’t suffer in silence, let them know.

I really look forward to chemo day now, it’s reassuring for me knowing I’m responding, I get to catch up with my BCN and ask all the questions I’ve been flapping about all week and chat to other people.

You’ve got this! X

@TheStarsAreComingOut hang on in there. This is the worst awful spiralling time. If it is confirmed you will have a plan and then things get more manageable.

@cannaecookrisotto thank you. Posts like yours make me a little less terrified 😊

I just found this thread - so hello, brave women! I’m not an active Mumsneter but have been feeling a bit alone after a diagnosis this week. Invasive ductal carcinoma, grade 2, hormone receptor positive. I had an MRI and am waiting for results. Based on info they have now, it’ll be surgery at Charing Cross hospital on 2 December, radiotherapy and hormone suppressors for 5 years.
I’ve stopped my HRT which makes parenting a sensitive ADHD 11 year old harder. Emotional regulation is going to now be a challenge for both of us rather than just for her! Im a single/ sole parent but I have some money friends who have offered to help. Not sure that kind of help I’m going to need. Guessing school runs and cooking and washing clothes?! I’m going to read through the thread but wanted to say it’s good to be in company with people going through a similar thing…

Hi @sophiesiobhanwelcome to the shitty club of awesome women. I had the same diagnosis. The beginning of the process was the toughest for me, waiting to get started with the plan and worrying about how it would affect my life. The actual surgery and radiotherapy was reasonably straightforward and I remained well throughout and was able to be active etc. I imagine you’ll definitely need some help after surgery so that you can focus on resting. My daughter is grown-up and so I’m not sure post surgery or during other treatments what the best type of help would be, I’m sure others with younger children will be along to say what helped for them. I hope you’re doing okay emotionally, it’s a really tough time and it can be very lonely even if you have lots of people around you. They sometimes don’t quite understand how you’re feeling or what you need and it’s sometimes difficult to say. Xx

Hi @sophiesiobhan
Welcome to the spicy tit club, so sorry you’re here but it’s a comfy reassuring place.

I’m having surgery after chemo as mine is triple negative (looking like a DMX for me but my boobs are crap to begin with, like dead flappy squirrels after having children).

I’m planning for help with the kids (9yr old and 7mo), full time for the first week because I won’t be able to lift the baby (bowling ball size, she’s massive) and help with the essential daily household stuff. Anything non-essential can piss off.

Sending gentle hugs, it’s a shit hand to be dealt and can feel like an emotional wrecking ball. Do you have good support IRL too?

@GrannyGoggles thank you for the encouraging message its really helpful to see how other women have got through all this.

@cannaecookrisotto can you tell me where you got your cold mits and socks and did you need to get extra gel packs?
I saw two people today, one maybe a registrar and then the oncologist. Interesting that the registrar said mmm well you can use cold mits if you want but its up to you. The boss oncologist was very different and said yes definitely use them there are studies being done and its helpful in preventing neuropathy and also in avoiding them having to lower dosages of your treatment so that neuropathy can be avoided.

@PoptartPoptart Yes I am scared too especially now they have listed all the bloody side effects, how is it possible to have constipation and diarrhea at the same time?. I hate feeling sick, I dont like injections let alone injections in your belly. It all sounds totally menacing.

So the plan is that they will send me for the ecg, then blood tests and a picc line fitting and then treatment will be docetaxal every three weeks for - he said the gold standard - which is 6 cycles. At the same time targeted hormone therapy of phesgo. Checking after 3 cycles and then if all goes well continue with the wretched phesgo injections for I dont know how long maybe forever that bit of information might not have been given or i have lost it amongst all the other stuff. Apparently I might have heart failure so that could carry me off instead of cancer...

So registrar said hair thinning but all the info says hair loss and i cant be doing cold hats as well as cold feet and hands so I am saving my hands and feet and sacrificing my hair.

Not sure how I feel apart from tired and terrorised and my husband is also scared of bad reactions and having to phone emergency services - hes listed all the numbers in preparation.

So, does anyone know when the side effects kick in and how long do they last for? and is everyone doing cold feet and hands too?

@cantbelieveIamhere Hi, . Your treatment sounds the same as mine. I’ve had 6 lots of carboplatin and docetaxel along with phesgo every three weeks. I have had a
couple of MRI’s along the way to check tumour was reducing. Also heart checks. The picc line has been good . DH does the flush and dressing change weekly. I have felt tired all the way through and have had all the side effects but only mildly. I took all the meds given to me, and the stopped everything in their tracks . They start usually by end of the first week and last about a week for me. I cold capped so hair has thinned but still there. No one told me about mitts and boots ! I believe I will have 18 rounds of Phesgo altogether so a few to go yet! I’m waiting to hear about surgery which should be soon . I honestly thought it would be much worse that it has been so think I’ve been lucky. Good luck , you’ll be very well looked after 💐