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💗

@PoptartPoptartI had no idea that were eligible for free flu and Covid jabs, thank you I’ll be contacting my gp x

@PoptartPoptart you’ve reminded me to book in for my jabs so thanks for that! I’ll get onto them on Monday.

It is the lack of control. I went and had my brows microbladed too, I can live without hair but the thought of being without brows was like the final straw so that was at the top of my to do list. I’ve been cold capping for 3 weeks on PC and my hair is holding up but I’ve read about the “day 21 shed”. I don’t know how true this is, but Monday is my day 21 so I’m half expecting to wake up like an egg. Will report back 🥚

I’m actually quite excited about getting my eyebrows done - I’m not sure why 😀
The lady on the phone warned me that it might be a bit uncomfortable and sting a bit afterwards, and I was like, seriously, this is the very least of my worries right now! 😂

But yes, like you, the thought of not having any brows freaked me out a bit, so this seems like a good solution.

”I’m half expecting to wake up like an egg” - this did make me smile 😃 I’m keeping everything crossed for you that the cold cap continues to work 🤞
Keep us updated x

@PoptartPoptart I’m well chuffed with my eyebrows and you’re right to be excited, they will look amazing. I’m pissed off I didn’t think about doing it before! All that time spent tinting my eyebrows when I could have just done this all along. I’ll defo be keeping up with it.

Glad I made you smile, as long as I’m an egg with eyebrows I’ll be able to cope 😂.

@cantbelieveIamhere no problem at all :), six biopsies is enough to torment any tit. It says on the NHS website that you will be “a bit sore but over the counter paracetamol will help”. Lying bastards!! I was crawling out of bed at one point after mine. I had a lymph biopsy a few weeks after and it was nowhere near as bad. They put a marker clip in my twat lump at the same time as the lymph biopsy too which was fine. The radiologist said “this is so we know where to find the tumour during surgery”. I was like “ how can you miss it? Have you not seen the size of it? One tit looks like an angry watermelon and the other looks like a dead squirrel in a sock”.

They must have thought I’d lost my marbles.

Another little tip for anyone who doesn’t already know - a cancer diagnosis also makes us eligible for free NHS prescriptions.
You can pick up a FP92A form from either your GP practice or from most pharmacies. It’s a very simple, straightforward form (just one page) and the GP just needs to sign it or stamp it. Then pop it in an envelope and post it off.
The exemption certificate lasts for 5 years and includes all prescriptions (not just those related to cancer).
Hope this information might help someone x

I've been away from this thread for a while, but so much useful information being shared

If anyone is on chemo and is uncomfortable when wearing, get some lemon barley water. I don't know why it works, but it does.

My real top tip is to book onto a look good feel better course - you get a free make up class, pampered for a bit and sent home with loads of free make up and products.

I'd also order a little lifts box, really useful. You can get some free tickets for things from something to look forward to as well.

Lastly, I imagine holidays and festivals etc are from from some people's minds, but I got an accessibility pass for a couple of festivals last year, and a queue jumper in Disneyland Paris last year because I couldn't cope with the standing up for hours in the queues. Always worth asking what you can get I think 😊

@SunnyValemin that all sounds great - thank you so much for sharing x

@SunnyValemin I’m going to try the lemon barley water on Weds!! Great tip, not heard that one before either.

Booking onto a LFFB course too, there’s a Maggies right next to the Christies and I keep meaning to pop in on my way past. For the free stuff if nothing else 😂.

Just realized I put when wearing and meant weeing! But my nurse recommended lemon barley water and it really helped me.

I'm always looking for freebies - may as well when it's such a crappy time xx

@SunnyValemin that’s so funny, I thought you meant it helped when wearing the cold cap to make it more tolerable!!! You should have just left me to it, I’d have been sat there on Weds with cold cap on, a pint of lemon barley water and declaring to everyone this new sorcery 🤣🤣🤣

@cannaecookrisotto I found a flask of hot squash (lemon barley optional) really helped with tolerating the cold cap so you wouldn’t sound too crazy

I hope you all find cold capping successful. I’m 35, had long thick hair, and finished my 16 chemos in the summer. It doesn’t look amazing, I lost so so much, BUT if you didn’t know how it looked before, you wouldn’t know. If it’s washed and pulled back the right way, it looks normal.

😂😂 haha imagine if I hadn't realized!

Okay so I have just heard from hospital and consultant wants to see me tomorrow which is exactly two weeks since my appt and biopsies.
Its good because its quick but now I am terrified that it means its going to be really bad.
Have just re read my cancer letter and now think I am going to be diagnosed with inflammatory breast cancer and maybe thats why hes calling me in so quickly as I havent had any scans or anything yet

now I feel sick with fear

@cantbelieveIamhere do anything to keep busy and do not google. There be dragons. You are at the worst point as you do not know what you’re dealing with and what the plan is. Hopefully the news will be better than you fear but once you have a plan it is easier to manage. Believe me, I’ve been there in spade loads and am on the other side of the initial roller coaster.

@cantbelieveIamhere quick is good, they’re seeing you quickly so they can get you started on treatment quickly. They don’t like to piss about with any cancer types at any stage so try not to read too much into the speed of things. What’s making you think you have IBC? I’m asking because I was convinced this is what I had too. It wasn’t. I got seen 2 weeks after biospy results too, had Biopsy on 18th, got results on the 1st so 2 weeks is about right.

Let us know how you get on, we’re here to support you xx

I’ve got a question for everyone - has anyone experienced this?:

They did an US on my lymph nodes on the 11th Sept. Said they looked suspicious, took 2 biopsies.

Saw Ongologist on 15th Sept, biopsy results obviously not back yet but she had a grope in my armpit and was like “we can expect the results to be positive”.

Had appt with the Oncologist today and she said that the lymph biopsies have come back negative, no sign of lymph spread, only inflammatory response markers. She said they discussed at MDT and have agreed that repeat LN biopsies will be done to make sure they do the right thing during surgery 🤷🏼‍♀️.

So my question I guess is, has anybody ever had a similar situation? What’s baffling me is they didn’t just do one biopsy, they did multiple and they all showing negative. Do I dare to dream?

@cantbelieveIamhere I had an MRI a while back now, a couple of weeks after I had a call from the hospital wanting to see me the next day. I was absolutely shitting myself thinking it was bad news. It wasn’t at all she just wanted to tell me my treatment plan and when I was having surgery. Hopefully it’s something similar for you tomorrow, be keeping my fingers crossed for you xx

They did that with my CT too. Called me and asked me to come in next day to discuss the results. I was absolutely shitting my pants. Full on existential crisis mode. Walked into the room practically bracing myself and they declared the CT came back clear. I was obviously elated but when I think back on it now - why TF couldn’t they have told me on the phone and put me out of my misery?!

By the way, I should mention that on the other cancer threads I’m Dancingwhilstfacingthemusic. I managed to muck up my name on this one 🙄

All the best for tomorrow @cantbelieveIamhere

@cantbelieveIamhere Thinking of you tomorrow. At least you will know what you’re dealing with and have a plan to move forwards. No more waiting and wondering, but an actual plan you can focus on x

@cannaecookrisotto When you saw the oncologist on the 15th and she said ““we can expect the results to be positive” - do you think she could have possibly meant ‘positive’ as in good news that it hadn’t spread to the lymph nodes? (rather than a ‘positive spread’ to the lymph nodes iyswim)?
it all depends how it was said I guess, but the fact the biopsies have come back negative made me wonder whether that’s what she meant 🤷‍♀️
Keeping everything crossed for you 🤞

@PoptartPoptart no she meant as in positive for cancerous cells.

I floated it past my new friend earlier (our cancers are identical, same age too so we’ve been comparing every tiny thing) and strangely the same thing happened to her.

Told her that based on MRI and US images they were sure they looked suspicious, biopsies came back negative, they repeated the biopsies and again came back negative!! It then went to a lymphoma panel to make sure they hadn’t missed anything. So they’ve said the science has proven them wrong but they’ll still make sure during surgery.

So who knows 🤷🏼‍♀️. It doesn’t change my treatment plan but I like to know what’s going on. The uncertainty freaks me out. I’m going if to crack on as normal until I know otherwise. I’m just so used to shit news at this point that it was quite a surprise to be told “well actually the biopsies came back negative”.

To add further bollocks to the mix, the day I got the original cancer diagnosis, the surgeon did a rigorous clinical examination of my lymph nodes and said he couldn’t feel anything. They also did an US of my nodes during the original lump appointment back in August and didn’t see anything.

I wonder if infections can cause lymph nodes to look all squiffy on US? The original biopsy site got infected, I was leaking all sorts and then they did the lymph biopsy not long after.

I’m musing here to stop myself from googling it, otherwise I’ll be at it all night driving myself round the twist 😂.

@cannaecookrisotto your musings actually sound quite feasible to me 🤷‍♀️
Two lots of negative biopsies would suggest you might dare to be quietly hopeful - but I know what you mean about getting used to hearing shit news and finding it hard to believe it might actually be positive news.
Like you say, your treatment plan will be the same regardless, so try and carry on and not think about it too much (easier said than done I know).

@cannaecookrisotto I was told my lymph nodes looked inflamed on US but that it was ‘probably just due to bruising from biopsy’, so I think it’s possible that infection could cause them to look suspicious. It’s good they’re being thorough, but great news if they’re negative!

Okay so have had my appointment and I have two lumps which in total measure just over 5 cms its grade 3. Consultant said dont worry grade 1 or grade 3 its still the same treatment.
Definitely going to be mastectomy left breast. Even thoughthe lumps are on the side of my breast nearer my armpit rather than breast. Might be chemo first, might not as one more result to come in HER2 - something about positive or minus, not sure now which might be best and also need to have CT scans x 2 one for bones and the other for the rest.
Something good about its feeding on oestrogen I think which then depending on HER test might be good to have targeted treatment.
I will know more of the plan once scans are done.

all a bit of a blur, spoke to a lovely breast cancer nurse too who was lovely but have come home and feel sick at the thought of whats to come.
She said they will never give scan results on phone and will always call you in so dont assume its bad if you get called in as that is normal practise.

Scans will be soon and if clear then the rest can be cured - if I can surivive the side effects of it all.

She also said its fine if I need to drink wine!!