Likely breast cancer after ultrasound - thread 2

[spartanrunnergirl]

Welcome. The original thread (linked here ) 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).

I drove home gulping down tears with no idea what to do and no idea how to get through the days until my biopsy results. So I opened Mumsnet and made the original post, hoping someone might read it, and they did! One full thread 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 💗)

For anyone opening this thread because they’ve found themselves in the same situation I was in … 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 diagnosis.

You are not alone.

This is the awful club - full of awesome women💗

Fingers crossed for you @MrTiddlesTheCat , it was mine too. When do you get your surgery results?

Thanks for your reassurance @FavouritePJs . I have taken lots of comfort from people who have been through it before - thank you! I have sort of got my head around it now and have heard that it may be more manageable than anticipated. I really love my job so I’m hoping I can work?! TBH I’m vain enough that my main thoughts have been about my hair 😆 and looking ill.

They said 3-4 weeks. So next week hopefully.

For those of you facing chemo, I just wanted to say again that I used the cooling cap and had pretty minimal hair loss in the grand scheme of things. I had four cycles of Paclitaxel, 1 treatment a week. I know that it’s not been the same for everybody and I know also that some find it difficult to use. However, it’s an option that might make the treatment a little more bearable.

I was also terrified of chemo. I had 16 cycles - 12 paclitaxel and 4 EC. I kept most of my hair by cold capping although have thinned in various places. 10 weeks Pfc I don’t need a wig although have one if I want to use it. Getting my eyebrows microbladed was the best thing I did pre chemo.

As other posters have said, I’ve done everything they’ve recommended to prevent recurrence. I fear it coming back but know it not for want of trying.

@MonOnclei too worked from home and once I’d had my first chemo cycle realised I would be ok to carry on. I always took treatment day off but apart from that I carried on as normal. I decided against the cold cap for reasons I won’t go into, but the hair loss was hard to deal with, although like everything related to a cancer diagnosis and treatment, you soon get used to the new norm. My hair was quite thin before I lost it but grew back really lovely and thick, like it had a reset - sadly menopausal now (almost for the second time as went through it during chemo!) and it’s back to being thin and really shit.

Would it be okay to join you? I have a provisional diagnosis of invasive ductal carcinoma in my breast and lymph nodes, oestrogen positive her2 negative. My head is mashed. Have had CT scan, MRI and dye mammogram and now waiting to hear about my treatment plan.
So glad you are here and so sorry you are going through this too.

No need to ask, @PrincessFluffyPants, you are welcome even though you'd rather be anywhere else. I'm so sorry you are in this scary position. But a provisional diagnosis is the first step to a treatment plan that can get you clear of cancer. I've been on this thread for a while and am six years cancer-free. What's been great to see has been the huge number of women going through the horrible 'head- mashed' stage, working through their treatment and coming out the other side slightly scarred but very much alive and kicking. Take it in bite-sized chunks, don't Google, and allow all those people who love you to help you. We'll be here to cheer you along or just give you space to vent. 💐

So sorry you’ve had to find yourself here @PrincessFluffyPants I’m a year down the line since the mammogram that found my idc, which like yours is ER positive and her2 negative. Take it a day at a time. It’s all doable - I ended up with a mastectomy and chemo, both of which I was terrified of but were less scary than I had feared.

You’ll find good support here. In my experience the nhs staff were amazing too.

Quick update on my results. Her2 test came back positive so booked in with the consultant again next week. In the meantime blood test tomorrow. Will be booked in for MRI, heart scan, cat scan and breast clip insertion. The nurse called with all this information and was so lovely. The GP who I saw initially called to see how I was and was also lovely. I
suppose I’m dreading Chemo but find the posts on here very reassuring so thank you for those. 💐

Hi everyone, also checking in after a few weeks of being away from the thread. I’ve been silently lurking at times but have been trying avoid alot of internet whilst going through my treatment. Things in the news etc keep triggering me and I’m finding for my headspace just trying to avoid internet is helping me!

I’ve now done 5 out of 8 chemos. 4 EC’s complete and 1 out of 3 Paclitaxel done. So far I’ve found the Pax easier than the EC. But still early days.
Feeling very fatigued and honestly wishing the weeks away to just get through these chemos!
Also had what feels like a cough/cold for weeks now but have been told it’s post nasal drip caused by the lack of nose hairs!

I did cold cap for my first 3 but all my hair fell out after cycle 3. Literally not a hair left. So sadly the cold cap didn’t work for me. I don’t know why, I did everything that was recommended. Just luck of the draw I guess. Losing my hair has been really devastating to me. I have now got wigs so that has boosted my confidence - although I feel self conscious wearing them and feel like everyone is staring at my hair (when they are not!)
I also am wearing them all the time, even at home as I don’t want my husband and son (age 6) to see me without hair.

Hope everyone is ok and hello to all the newcomers who also find themselves here xx

To the newer members of the thread who have been recommended chemo - I am 40 and my lump was grade 3 IDC ER positive/HER2 negative. I was advised by oncology to have chemo as I am ‘young’ and they recommend it if you’re younger with a high grade tumour as it can lower your chance of reoccurrence and can ‘mop up’ any lurking cells hiding anywhere that can’t be seen on scans. I did have 1 positive sentinel node but no further node involvement and was told a node clearance operation wasn’t necessary.
So this is what they call adjuvant chemo and then I will be having radiotherapy and then being put onto hormone blocker medication.

You've been doing some really hard miles, @chococakey . I'm so sorry about your hair - it's easy for people who (like me) haven't had to deal with chemo, to underestimate what this means. Your courage is so high, it's inspiring. I don't want to sound trite saying this because my treatment was much less gruelling than yours (and others'), but it does sound like you have made it through the absolute worst part and the next phases will be easier in comparison. You'll soon be able to start planning what to do with the wigs you'll no longer need- can they be donated, or are ceremonial wig bonfires a thing?
Very best of luck with the final few rounds of Paclitaxel, and here's to light at the end of the tunnel. Xx

You're nearly at the end @chococakey it does feel like it's going to go on forever. But it will be over soon.

I cold capped and lost 80-90% of my hair between my second and third ECs. I also 'did everything right'. Please, please do not blame yourself. I think the Paxman site quotes 50% of women will lose 50% of their hair on EC, it's incredibly tough on hair and there's nothing you've done or not done that's made a difference. It's literally the luck of the draw. I followed the dose dense EC (which was grim) with 12 lots of paclitaxel, and my hair stopped shedding and started growing back during that time. I did keep cold capping (because I had so many chemos!) If I'd just had paclitaxel and no EC I think I would have kept all my hair. My cancer was treated very aggressively (triple positive, grade 3 at diagnosis) and the lump was virtually gone by the time I had my lumpectomy. Radiotherapy was a walk in the park compared to EC!! Keep on keeping on

It really is random re our hair. It’s tough trying to do everything we can but still facing crapness. Mine thinned madly during EC but I only had a bald patch on the crown with the paclitaxel, which was my initial chemo treatment x12.

I’m really sorry to hear how tough it’s been @chococakey (& will join you in clonking the people who, after chemo, say “it’s all behind you now”). KBO.

It really is. I hope I haven’t upset anybody because I got on ok with it. I’d say that it’s very much 50/50 and I was extremely lucky. It’s an amazing device but it’s not miraculous either.

It’s such a tough road for everybody and I too get annoyed with people assuming that “it’s all behind you” when the truth is, your peace of mind is shot to bits and that is a tough ongoing journey.

I wish everybody a restful weekend ❤️

At the Doc's today asking for a review of my Tamoxifen prescription because not sure why I'm still on it 3 years after my ovaries were removed. I'm six years down the track and I'm well- but it isn't over.

I’ve chatted to many people at the chemo unit about the cold cap and it really does seem like a 50/50 thing. Some people seem to keep a good amount of hair and others lose it all.
I’m on a dose dense regime and I know that the EC is tough on the hair. My hair was very thick and I think maybe that might have gone against me as the first 2 times I didn’t think the cap felt cold enough to me. Maybe too much hair for it to get to the follicles. Who knows.
But after a lot of tears I have tried to accept that it’s gone now and stop worrying about it.
Trying to embrace the wigs. At least I won’t have to worry about dyeing my grey roots for a while!

I do like the sound of a ceremonial wig bonfire one day 😂

Happy Friday everyone x

“Ceremonial wig bonfire” is a fabulous name for a rock band. I’ve described my experience as a bonfire of the vanities - or more aptly, “bonfire of the vanities”.

*binfire of the vanities!

@chococakey big love to you

Love this! Put it on a t-shirt 👌

Can I add all my underwire bras to the bonfire too?

I just removed them all today from my drawer . Feels quite sad to get rid of them - and I feel hesitant to do it- but I was told by the nurse not to wear them again (ever!). Was everyone else told this too? Not sure if it’s due to location of my scar.

I wasn't but I don't wear underwired anyway. One of the advantages of being autistic.

After my double mastectomy the moment when I got rid of all my bras was one where it really hit me. Just beginning to grasp that that part of my life (and body) was really over.. This experience throws up grief and shock in different ways.

There's a lot of stuff I'd like to chuck on the cancer bonfire! Head-bloody-coverings, for a start. I'm small, with a small head, and they are all too big, and look shit. I understand wanting to burn the wigs 'when it's over', but I think you can donate them, so I'll probably do that. Pay it forward and all that .

Sounds like the pile for the bonfire is getting bigger! Haha.

I’ve got round 6 of chemo tomorrow. My 2nd Paclitaxel.

I’ve been having quite a bit of pain in my breast where I had the lumpectomy. Just weird twinges rather than a constant pain. I’m sure it’s nothing but I will mention it at the hospital tomorrow. Wondered if anyone else experienced pain in the breast whilst under going chemo? (I’ve already had the lump removed as opposed to having chemo before surgery)
My surgery was before Xmas and the area is still hard but also now feels painful again when it had generally been fine.