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💗

@cantbelieveIamhereI’m starting chemo on 14th November, also decided not to cold cap, don’t want to be there longer than I have too and worried enough about it without a freezing head as well. I’m triple negative breast cancer and having preventative chemo as I’ve had a lumpectomy, 6 cycles of EC-T. I’m worried about the side effects too as there are so many! I wfh so hoping to still work on my good days try and have a bit of normality, my DH and DD can do the house work! It’s definitely a scary time, trying to keep positive, this group is an amazing support, we’ll all get through it somehow 😊

@cantbelieveIamhere
I’m at the Christies and they provide them during treatment but if your centre don’t, I’ve seen a lot of people recommend the Suzzi mitts/socks:
https://amzn.eu/d/icXcZY4

I’m cold capping and haven’t had any hair loss yet but the cold on head, hands and feet is a lot. I nearly had a meltdown with the cold feet last week and took them off in a tantrum 🫣. I will have another go at them tomorrow.

The nurses told me that heated blankets and heated ponchos are excellent too. I just take a normal comfy blanket to snuggle under. I guess a hot water bottle could help too!

Just saw the title and thought I’d check and send hugs to everyone.

Had bc back in 2012. Today had my routine mammogram (and now have post mammogram sore boobs) so it’s all been brought back to be, and now I have the ‘what if?’ Even though it was routine test, rather than because of symptoms.

Hi, can I join you all? Terrified to even out this down ‘on paper’ as it feels so grim. Diagnosed first ten years ago, just after my fortieth. Celebrated my fiftieth birthday at the end of August and of course my cancerversary and then just a couple of weeks later learned that it was back. Not only did I have a new primary in the other breast, there was also spread to liver, lung, bone and even my bloody thyroid. A total shock. I’d had some back pain and had feared the worst but this was way beyond what I had anticipated :( It’s been a rollercoaster. My oncologist assures me I am not dying and is amazing and encouraging. I still have very bleak moments. I’ve started letrozole, ribociclib and denusomab all in the last two weeks. So far no major side effects beyond sheer exhaustion. I wish you all well. Thanks for giving me space to write.

Sending love and hugs.

@Silverbirchleaf that must be so emotionally difficult, almost like post traumatic stress. I am still in the treatment part of my journey - with a long way to go - but I can almost already feel the nerves and dread about follow up mammograms. I am keeping everything crossed for you that the results are normal. x

@TheWillToSurvive that all sounds so hard. I don’t know what to say apart from I am so sorry.
I did read a post on one of the Breast Cancer Now forums recently. It was by a lady who had been all clear of primary bc for 12 years before being diagnosed with secondary bc. To date, she has been living with secondary bc for 8 years and still going strong. So I guess Your oncologist is right and there is so much they can do.
I can imagine you still have very dark moments though and I hope you are offered all the emotional support you need and deserve x

Thank you both. Yes, I have lots of support, I am so lucky. Never feel alone. I am looking forward and trying to feel positive, the alternative is too much to contemplate.

Okay so have just had phone call from unit just now and I am starting chemo next Friday 7th November, shes put me in a panic and I burst into tears like a baby.

She said no need for picc line as its an injection in thigh for the phesgo and chemo will be fine through cannula. She told me I will lose hair in two weeks so she said this drug you only need to cold cap for half an hour after treatment finishes so is worth doing. So now doing it all, cold everything.

Please give me some tips on what to take she said I will be there hours at least 6. I have a cool bag and ice thingys but not sure they will stay cold for that amount of time.

I am in shock its so quick and am dreading thigh injections, i hate all injections she said its just a sting as it goes in......

forgot to say thank you @mightneedalargesnifter for your info, so does the thigh injection hurt?

nurse has just told me lots of people use the mitts and gloves, wonder why we dont all get the same information.

Did you cope ok with having both done together on your first session? Will i be in a heap at the end of that day?

Hi there was no pain at all with the injection and I felt ok having it altogether on the day. I was given lots of medication to take home each time, for nausea, diarrhoea, and mouth ulcers. I learned to take them at the very first sign of any symptom. Also sent home with injections for 7 days to help with white blood cells. I drove myself a couple of times but I wouldn’t recommend it as I missed the turn off to my town each time! Obvs my mind was elsewhere!

Hello everyone, just checking into the new thread. I’m also from the original thread 1 but have been a bit absent. But try and check in when I can. I hope all my friends here are doing ok.

I’m 40 and was diagnosed Nov 2024 with ++- Grade 3 invasive ductal bc. Came as a huge shock. My mum had passed away from cancer only a couple of months before my diagnosis.
I had a lumpectomy in Dec followed by 8 rounds of chemo in Feb-June this year (4 EC & 4 Paclitaxel). I then underwent 15 sessions of radiotherapy. Now I am on 2yrs targeted therapy (Abemacicilb) plus Zoladex injections and Exmestene for 10yrs.

It’s been a rollercoaster of emotions for sure. Good and bad days. Lots of tears shed.

I would agree to anyone who is new here that the first few weeks after diagnosis are the worst. Once you have a treatment plan in place you will soon be swept up in the process and you have to trust that process. There is a wide range of treatments.
Try not to google. Everyone’s story and treatment plan can be slightly different.

Next month will mark a year since I was diagnosed. I will never forget hearing the words “we think it’s cancer” after my ultrasound and I felt like the floor collapsed and my life was over.
It’s been a hell of a year, but I’m starting to feel a tiny bit like my old self again.

My advice is to try and keep positive, keep talking, trust the process, don’t google and always ask questions to your nurses and doctors.

Wishing everyone all the best x

@cantbelieveIamhere thanks for the well wishes. First EC tomorrow at 11am. Honestly, I’m absolutely petrified. It’s the fear of the unknown and I’m just praying that it isn’t anywhere near as bad as I’m anticipating 🙏
They gave me the option to defer for another week (issues with my back which I won’t bore you with) but I decided to go ahead as the waiting is torture. I just need to start, even though I am dreading it.
I’ll let you know how I get on x

@PoptartPoptart be thinking of you tomorrow, hope it goes well for you xx

@Lovewine1975 thank you x

hi @chococakey! Lovely to read your update… amazing it’s been a year and what a year! Glad you are beginning to feel your old self again, even a tiny bit must be very welcome. Xx

Thinking of you tomorrow @PoptartPoptart, let me know how you get on, I’ll be starting EC in 4 weeks too.

Good luck today @PoptartPoptart

Hi everyone, just an update from me..
I had my first EC chemo today and am now back at home on the sofa drinking tea.

After all my anxiety and panicking it was actually ok - nowhere near as bad as I was imagining.

The nurses were all so lovely and were happy to answer all my questions and concerns.

The cold cap was actually so much better than I thought. It was very cold (obviously!) but it was definitely manageable and after about 15 mins I didn’t really notice it too much as my head just went numb. In fact, when they took it off at the end I was so distracted chatting to one of the other patients that I didn’t even realise it had come off!

They used my port to administer the chemo and it was all very straightforward and pain free. All the hassle of getting it fitted seems worth it now.

I came home armed with a ton of anti sickness tablets which I will take religiously, and my injections which start from Sunday.

I’m so glad to have the first one done now and, like everyone told me, the waiting and wondering was so much worse than the actual experience.

I just hope that any side effects are manageable now 🙏

Thanks to everyone for the well wishes and good luck to anyone else starting soon x

I’m sorry if I’m gatecrashing prematurely . I’ve been waiting for biopsy results for 10 days. Called my GP first thing this morning and was told they had them but the dr hadn’t passed comment and to call back after three. I do that and am told they still haven’t looked at them yet and they might call me today. This means another weekend of wondering if the lump and weird rib aches are cancer or not. Stupid bloody receptionist making out I’m an irritant for wanting to know the results. No friends to talk to about this. Surgery shuts at 4.30 so even longer just waiting and wondering.

@poptart I am so glad to hear your day went better than you might have expected!
Good to hear that the cold cap wasnt too bad either, but what are these injections you speak of? are these the ones that boost your white cells - is it you thats expected to administer them???

Hope that you have a minimal side effect weekend and are able to relax a bit now that you have got that one out of the way.

Enjoy your cuppa and best wishes. Hopefully its all as straightfoward as today has been. Thank you for letting us know.

@cantbelieveIamhere yes, the injections are to boost blood cells to hopefully avoid becoming neutropenic. They’re called Filgrastim - I have to start on day 3 (day 1 is today - first day of chemo - so I start the injections from Sunday).
Once a day for 7 days. They have to be kept in the fridge and they gave me a sharps box to safely dispose of them.
Some hospitals give one single dose injection instead (called pegfilgrastim) but not all do because they are too expensive apparently. As with everything, it seems to be a bit of a postcode lottery 🤷‍♀️
I brought some Emla numbing cream from the pharmacy to put on an hour before I inject myself. Not looking forward to it obviously but 🤷‍♀️ Just another shitty cancer related thing we have to put up with I guess 😢

@alpenguin I’m sorry for you - the waiting part is so horrible.
Try and stay positive and distract yourself if you can (easier said then done though I know) x

@PoptartPoptartI’m so pleased that chemo wasn’t as bad as you thought it would be and that it was ok. Find it reassuring as I’m on a two week countdown to mine and the nerves are starting to kick in. Hope the side effects aren’t too bad either. I am now reconsidering cold capping as you didn’t find it too bad might be worth a try, how long were you there for? x

@alpenguinso sorry that your on here, and hope you get your results soon, the waiting is like torture x

@Lovewine1975 The pre-chemo nerves were so so so much worse than the actual thing. I’d really worked myself up into a right state beforehand but it honestly was ok.
The cold cap went on 30 minutes before they started the infusion. I had to dampen my hair with water and smooth some conditioner on it (which I took from home). The actual EC infusion was administered by a nurse physically pushing it through from a syringe, and that took about an hour I think (no longer). Then I had to keep the cold cap on for another hour and a half afterwards. It sounds like a long time but there was so much going on with people coming and going and the nurses checking on me. Honestly it really wasn’t that bad. I did have a bit of a headache afterwards because the cap has to be quite tight, but I’m talking a mild headache. I’ve had worse after a bad day at work!
Next time I might take a couple of paracetamol just before they put the cap on (but must wait until after they have checked my temperature).
I can only talk from my own experience obviously but it really was ok x