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💗

Also its in two lymph nodes so i guess they will come out too

@cantbelieveIamhere I would suggest wine if the nurse said it’s ok - go for it 🍷

I’m glad you’ve got some answers but it’s a lot to process and sometimes we end up with even more questions, especially when they are still waiting on more results, scans, etc.
I keep a list and every time a question pops into my head I write it down and take it along to my next appointment to ask. I had 2 full sides of A4 when I saw the oncologist!(she didn’t mind and was very kind about answering all my questions - even the slightly ridiculous ones).
I also use voice memos on my phone to record my appointments so I can listen to them again, in case I forget some of the information (and there’s a lot of information you get bombarded with).
I can’t really offer you any words or wisdom or advice regarding your specific diagnosis because I’m no expert. I have a completely different diagnosis and set of circumstances to you and I’m still trying to figure it all out. I’m sure as more tests and results come through you will understand more and start to feel more in control of what is happening.
But please know that I am thinking of you and wishing you (and all of us on this thread of doom) the very best x

@cantbelieveIamhere sounds like hormone positive and you’re waiting on the HER2 results to determine if you need chemo before or after surgery.

Mine is grade 3 too, but like consultant says, won’t change your treatment at all! They told me the same, don’t get hung up on the grade, the hungrier the grade, the hungrier it soaks up the chemo!

Your other scans will come through quickly, then time to lambast this bastard out of your boob! You will survive the side effects so don’t you worry about that. We’ll see you through on here and the HCPs can help with side effects with meds. Like @PoptartPoptart says lists are great, I took a notebook 😬. I keep this notebook next to my bed as well, I write bloody everything in it. Even the feelings of doom when I’m having an existential crisis. Great tip for the voice memos too!! I always forget half of what was said the minute I leave. My mother comes in clutch here.

Keep a side effects diary too, that way if you spot any patterns you can raise with your BCN and they can prescribe you meds to minimise them.

It will feel a lot right now. Be kind to yourself, drink the wine. I set up a family WhatsApp group so that I could just update in one place. I found it overwhelming having lots of people wanting updates or asking how I was. This way I’m only sending out one text rather than 10.

And 🍷 for you ❤️

@PoptartPoptart @cannaecookrisotto thank you for your messages.
I am amazed at how women cope with all this shit.
I am up at 4.30 in the morning, I dont know how I am going to cope with it all.
Thank you for the tips about questions and side effects.

I am definitely needing to take control of it all and I am not just going to be saying yes to everything because I need quality of life not just quantity.
Some of these drugs have side effects that seem to make life appalling so I might be swerving those long term therapies.

Dreading it all. I dont know how some of you are managing to sound so positive I am in awe.

Bless us all its bloody awful.

@cantbelieveIamhere Like you, I don’t know how I’m going to cope with it all either. But we will. We will because we have to.

Also, I’m good at sounding positive when I’m on here giving other people advice. But when I’m alone with my thoughts, my mind can go to some pretty dark places too.

What I have found is that at the beginning it is all very raw and overwhelming. It does become easier to accept your diagnosis and treatment plan after you’ve had some time to process it all.

Reading all the side effects in one go is also very, very scary. I just keep telling myself that I’m unlikely to get them all.
My BCN said some people sail through chemo / radiation fairly unscathed and all I can do is try and keep myself as fit and healthy as possible and make sure I report any side effects straight away.

Sending positive vibes x

Also - I was absolutely dreading my surgery. I was proper petrified. I’d never had general anaesthetic before and I was in a right state. I worked myself up to the point I thought they’d have to carry me down to the theatre kicking and screaming.
On the day of surgery I kind of went into a weirdly calm state - like I was having a bit of an out of body experience (nothing woo - just like it was all happening in slow motion around me. Probably my body’s defence mechanism).
And you know what - it was ok. It wasn’t half as bad as I was expecting. All of the awful things they told me that ‘could’ happen (sickness after GA / blood clots, etc.) didn’t happen. I survived, and now I’m 4 weeks post surgery and that part of my BC journey is just a memory now.
I guess what I’m trying to say is that we tend to always expect the worst and focus on the bad bits. But usually the reality isn’t as bad as we imagine. And even if it is, we find a way to cope x

Don’t know why this posted twice - sorry - and now I can’t delete it!
Also - I was absolutely dreading my surgery. I was proper petrified. I’d never had general anaesthetic before and I was in a right state. I worked myself up to the point I thought they’d have to carry me down to the theatre kicking and screaming.
On the day of surgery I kind of went into a weirdly calm state - like I was having a bit of an out of body experience (nothing woo - just like it was all happening in slow motion around me. Probably my body’s defence mechanism).
And you know what - it was ok. It wasn’t half as bad as I was expecting. All of the awful things they told me that ‘could’ happen (sickness after GA / blood clots, etc.) didn’t happen. I survived, and now I’m 4 weeks post surgery and that part of my BC journey is just a memory now.
I guess what I’m trying to say is that we tend to always expect the worst and focus on the bad bits. But usually the reality isn’t as bad as we imagine. And even if it is, we find a way to cope x

@cantbelieveIamhere at least things are moving forward now and that's good, and wine always helps, think I might of had a glass after one of my appointments as well!

I think all of us are stronger than we think we are, and some how manage to find that strength and resilience to get through this. I try my best not to Google stuff now as I always end up reading the bad stuff not anything positive. Also a good sense of humour definitely helps!🙂

@cannaecookrisotto you’ll cope with it. I’m not positive all of the time believe me. Sometimes I sit there in mortal terror on the couch but it eases and passes.

When I was at the same stage of the process you are now, my head had completely fell off. You’ll look back on yourself in a few months time and want to give yourself a hug and tell you everything will be ok. Trust us when we say this step now is the most terrifying. The unknown. But once you get into action you’ll start to regain some rhythm and routine. Don’t get me wrong, the fear doesn’t go but it’s not as ever present.

I had chemo this morning and I’m now having a nice bit of retail therapy in Hoopers to congratulate myself on another week down! I look like an absolute horror, my hair is wet and tucked under a wooly hat and I’m pretty sure the staff think I’m about to stuff half the shelves down my pants but stuff em 😂

@cannaecookrisotto good news that the nodes are negative on testing. Lymph nodes can look 'brighter' on scans if they're inflamed or infected but obviously with cancer about everyone would need to be doubly and triply sure before saying they were clear. It does sound like you can be hopeful.

@cantbelieveIamhere Glad you have had your appointment and now have your results. Sorry you have so much ahead to deal with, but you will get through it. This initial time is difficult with everything looming large ahead - as you go along step by step things will be clearer and easier (if not exactly easy!)

I used the 'Notes' app on my phone after appointments to jot down what had been said / things that happened - and edited them on my iPad at home later in the evening. I then wrote down questions on the app before my next appointment. It meant I had everything in one place and could refer back.

Hi all, I have completed 4 rounds of EC. Was glad to see back of it. Had my first round of paclitaxel on Friday, have heard it’s much easier. I am not finding it easier at all. Yes, there is thankfully no nausea, but I’m experiencing the worst back and hip pain. There’s also some tingling in my toes. I didn’t use cold packs, but I did use compression gloves and socks. I think on my next round I’m going for the cold packs. How does that work with a 3 hour treatment? I’m guessing I’m going to need back up packs?
Had anyone else found paclitaxel tough?
feel like I’m rambling, but I’m in quite a lot of pain right now.

I used cold packs for hands / feet as well as cold capping during paclitaxel. Through chemo I often sat on a heated blanket and went to bed with a long hot water bottle propped up against my back with a pillow behind it as I lay.

(aka Dancingwhilstfacingthemusic)

@Notjustabrunette I find that a Loratadine a day keeps the bone pains away. Might be worth a go!

I’m using the hands and gloves, Christie’s provide. They pop them on before your Paclitaxol and they keep mine on for 90 mins after it’s finished. I don’t let them change my ice packs because I find it borderline intolerable. I bought neoprene diving gloves and socks off Amazon (less than £20) and cut the fingertips and toes off so that at least the rest of my hands and feet would be warm but the extremities would get the benefit. I also cheat and pop my feet/hands in and out of them for a 5 minute break every now and again. I’ve had 4 weeks and not had any neuropathy symptoms yet touch wood.

As Bimbles says, any extra warmth helps. I have blankets but I think I’m going to take a leaf out of Bimbles book and invest in a long hot water bottle, I never knew these existed but hallelujah!

I’ve yet to do EC but my tip for PC (and it’s only because I’m not having side effects barring semi-hangover fatigue, I could just be a lucky bugger but it’s the only tip I have) is hydrate as much as you can. Every day but especially the day before, during and after chemo. Lots of water. I do about 3L a day minimum. Loratadine, give it a go for the aches and pains. I went from stabby hip/pelvic pain to no pain after a few days of starting them. I really hope they work for you too ❤️.

Has anyone had a port fitted?
I chose a port over a picc line thinking it would be easier to manage on a daily basis, but now I’m getting squeamish about it all. They use local anaesthetic apparently to fit it. Any advice or (positive) experiences welcome please 😊

@PoptartPoptartthis is something I would be interested to know as well, the thought of getting a picc line or port fitted sounds quite scary!

Hi my hospital does not offer a port apparently so I had a picc line which was inserted under a local
anaesthetic . My DH was then taught how to flush it and change the dressing which has to be done on a weekly basis. It causes no issues. I much prefer that to having my treatment in a vein each time . I have a cover to wear in the shower and of course I can’t go swimming but apart from that I’m really glad to have it.

@PoptartPoptart and @Lovewine1975 I have a port and it’s the best thing ever. I had it fitted last Weds after having 2 weeks of being cannulated (I had to start treatment PDQ and wait for port).

The procedure itself was fine, they can offer you sedation (bit of fentanyl and midzolam which I wasn’t about to turn down). It doesn’t knock you out, just makes you feel a bit pissed and give less of a shit what’s happening.

Looking back I would have managed with just the local but I was nervous. It takes about 30-45 minutes to put in, with a fair bit of that time cleaning and sterilising your skin.

It’s very relaxed, the radiologist was talking to me about those Labubu travesties whilst he did mine 😂. I had it done first thing before treatment, so he popped the needle in and covered with a dressing. Had to wait two hours for the sedation to wear off then they hooked me up to the meds. Released back into the wild about 6pm.

Had bloods from it on Tuesday this week and chemo on Weds. It’s magnificent, no faffing or poking multiple times and your hands are free from cannulas.

It’s also completely under the skin, so I don’t have to think about covering it in the shower and I can go for gentle swims when I feel like it.

But even if port wasn’t an option, I’d take the PICC line and be as equally relieved. The week I had the port fitted (was a Wednesday) I’d been prodded 11 times since the Monday. My arms still look like I’ve been living in a crack den for month.

Thank you @cannaecookrisotto that’s really good to know and you’ve reassured me that I’ve made the right decision.

“My arms still look like I’ve been living in a crack den for month” This really made me laugh, thank you! 😂

@cannaecookrisotto it doesn't sound to bad, its the thought of it that freaks me out. My brain is doing way to much thinking at the moment, I am still waiting for my first Oncology appointment and I am overthinking everything!

Overthinking everything is exactly what I am doing too in between waiting for the phone to ring with the next dreaded thing to face.

@PoptartPoptart glad to help and get you laughing is a bonus! 🤗.

@Lovewine1975 yes it’s strange at first don’t get me wrong, I was weirded out by being able to feel the cannula by physically touching my neck, but as my wise DH said when I voiced this to him “don’t touch the bleeding cannula then”. Thinks he’s clever, twatty bollocks but he was right. I don’t even know it’s there now! Can sleep on that side comfortably too.

@cantbelieveIamhere overthinking is normal, you’d be far stranger if you wasn’t overthinking everything at the moment, and there’s no point me saying “try not to overthink”. Because I did it too. All I will say is just hang on in there. As a wise lady on here TopofTheCliff says, “knowledge is power”. And she’s 100% right ❤️. I hold onto that thought when I feel myself spiralling down the rabbit hole of doom (this happens less frequently now).

I find I go back and forth between ‘knowledge is power’ and ‘ignorance is bliss’ 😂
I want to know stuff, but when it starts to get gross or scary I’d rather not know too much.
I started watching a clip about how they insert the port, but then wished I hadn’t (I’m very squeamish)

My BC nurse just confirmed that I’m starting chemo two weeks today 😦
I feel like I need to make the most of these next two weeks while I’m feeling physically well - and I’m gonna eat all my favourite things in case I lose my appetite on chemo.
It sucks that it’s over the Christmas period - no mulled wine or Baileys for me 😢

I loved my port. Was still glad when it was removed, though!

The 21 day shed I think is mostly if you're having dose dense (every two weeks) EC. My hair definitely fell out after my second EC, before the third. I might be wrong though. It stopped shedding during paclitaxel (I had EC first) and started growing back. I kept cold capping, which hopefully helped with the quick regrowth.

I had my last Herceptin injection today 🥳 was having those every three weeks.

@PoptartPoptart what regime are you starting?

hydration hydration hydration!

@BatshitCrazyWoman they’re going to do my EC every 3 weeks, it’s on my agenda to ask the oncologist why this is and not the dose dense every 2 weeks. I’d rather get it done in 2 months than 3. Expedite that shitness and get surgery done.

I’m cold capping now on PC and immuno and not lost hair so far 4 weeks in. But I’m expecting that could change when I start the EC. I’ve heard it can protect follicles as you say and promote regrowth as you say so I’ll carry on. How did you protect your scalp from the cap? The thought of that icyness on my shiny bald head is a nightmare 😬.

Amen for the last Herceptin injection! Bet it feels amazing! Can’t wait to get to my “lasts”!

I asked the nurses for one of those theatre cap things to wear under the cold cap. Once I'd gone numb with cold, it was fine 😬 I never had absolutely no hair (I didn't shave it off or anything).