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💗

I've been off MN a while but popped in to look something up and saw this thread.
I was diagnosed in 2019 and finished treatment in 2020. Lumpectomy, chem, herceptin and radio. Got my 5 years all clear 6 months ago so no more annual mammograms.
Someone posted this
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)

Just to say I still have breast pain both where the lump was and elsewhere. It's another thing they don't warn you about but every woman I know has the same (I belonged to a little local group).
The right bra helps and it gets worse if I wear a normal bra.
Also pain was my first symptom so I'm always sceptical of "don't worry breast pain isn't a sign of breast cancer". Very occasionally it is.

I am wary of going to 3 yearly mammograms and have decided to have private ones in between.

I totally agree with you. When I presented to GP I was told it’s probably nothing if it hurts. That couldn’t have been more wrong! So yes it definitely can be a symptom. I’m also aware of people who have tumour site pain. I don’t fortunately, but I do still get electric shocks occasionally which is apparently from radio. Like you, I’m five years in too and I’m going to ask at my next appointment in June to not be discharged. If they say no, like you I think I’ll also pay privately.

Could it be something to do with the implants? I mean surely they should have been replaced by now? I thought they only lasted a decade. I know
this is a terrible time for you, all you can do is keep busy until the appointment. When is it?

@TheFormidableMrsC it’s next Monday afternoon, I’ve been in France for a few days and a change of scenery and a lovely bike ride has helped in the moment, but my worries surface in a nano second. My mum died of BC aged 59, i’m 50.

I know in theory I should have had them (implants) replaced at 10 years, though it’s not set in stone and so I just didn’t address it, it was only in last few years I was wishing I’d never had them done. I remember a friend advised me you can get breast implant cancer too, though the ones I had run a lower risk of it apparently.

I’m so heightened to every twinge now, last year I had a very bad chest infection for nearly 3 months and think I busted some ribs in the process, it felt like they were piercing my breasts and I was having to bite/scream on a pillow everytime I coughed. But every cough now I’m thinking it could be a sign of spreading cancer. Thank you all for listening , I hope you’re all having a decent day as possible and can take joy whenever is possible. Xxx

Unfortunately I broke my shoulder on the same side last year and I'm still suffering with that. Even after surgery I can't tell what is shoulder injury pain and what is breast cancer/surgery pain. The physiotherapy recovery exercises are very similar and I'm convinced they're connected.

I started tamoxifen last week and now my sleep is full of crazy vivid dreams every night. One night I dreamt that my house was full of bears and we has to dash to the bathroom and back into the bedroom, and could only creep into the kitchen when they were sleeping. It was so real I half expected to see a bear when I woke up and left the bedroom.

I have just had a tumour removed and I had no pain at all before it was spotted on a routine mammogram, and couldn't find it even when I knew roughly where it was.

Bless you, I really do feel for you and understand your heightened worry with family history. I’m glad you got a few days away at least. I really hope this week flies for you.

Well I’ve had a pretty grim appt with an oncologist today so brace yourselves for a long ranty one!

Firstly, my oncotype score wasn’t available so we didn’t have that to inform our discussion today.

I went in very accepting of the fact that I should have chemo and thinking that was what the medical team wanted for me, but he just confused the shit out of me.

We went through my predict scores, with chemo adding 2% benefit for 5 yrs, 5% for 10 and 7% for 15 year survival rates. He kept emphasising that the ball was in my court and that it was up to me to make a decision that I was happy with and wasn’t giving me any advice as to which way he thought I should go even when I pushed and asked lots of questions. He was really making me doubt myself, and kept referring to the 2% figure which felt to me like he was minimising it. I kept asking what his advice would be but he wouldn’t commit and just kept referring to the stats. My husband came with me and he said he was trying to show me that I should make a decision that I would have no regrets about but I have to say it was really strange and a complete contrast to the experience I had with my lovely surgeon.

The other shitty thing is that I am now just over 8 weeks post surgery and he told me that it’s very important that chemo starts within three months of surgery. He said that we’d have another appt in three weeks once my oncotype score was available and I should come to that meeting with a decision, regardless of the result of the oncotype test. Fine. I pointed out my surgery date and said that we better assume I’m having chemo now in that case to get the ball rolling as we’d be close to the three month mark by that appt and he got really awkward with me… saying “oh that’s what you all say to me” and that there was a waiting list and we may end up needing to start slightly after the three month mark. Alarm bells were ringing in my head!

Sorry I expect I haven’t explained things very well but my head is absolutely spinning. I’m happy to have the chemo, but am I already set up for a worse prognosis because of the delays?

Edit to add context: IDC grade 3 and high grade DCIS, ER/PR + HER-, 42 years.

Argh, @MonOncle, that really sounds poor. Good on you for pushing back- it's not good enough to create that delay then blame you if you don't make an immediate decision.

@MonOncleI’d get in touch with Breast Cancer Now and have a chat with them. I didn’t ever ask for stats but I was told I needed chemo so I just accepted that. I think it’s weird giving you a choice as such. Either you need it or you don’t, surely that’s how it works? For what it’s worth, I’d have a chemo for my own peace of mind.

@TheFormidableMrsC it was so weird! It was like he was talking in riddles whilst trying to get me to make the correct answer 😅. I emailed my nurse last night asking to chat as I’m really worried about this three month mark.

@PemberleynotWemberley thank you, I have made my mind up to have the chemo and I signed the consent form for it yesterday as I don’t want to delay anything because of a late oncotype result!

I have made up my mind and I was already quite accepting and resolute but the experience yesterday has just upset me and got my mind whirring again.

Gosh @MonOncle , that sounds really shitty. As if all of this isn't hard enough to navigate as it is with clear, concise communication. It feels like it's just made unnecessarily harder when things like this happen. Equally, feels scary when things are down to opinions and choices rather than this + this = this and therefore we follow this path.

I'm glad you have made your choice regardless and for what it's worth, I think I would do the same.

I hope you have a more positive experience next time

I'm having a low day today. Think it may be my first one. I just feel sad.
Sad that everything has changed. Sad that what DH & I had been looking forward to for years and years (the kids turning into adults and us getting to prioritise ourselves more) has all just fallen apart. Sad that DH seems terrified to be anywhere near me incase he hurts me. Sad that i've turned my kids worlds upside down. Just sad.

It is a lot to process @AlwaysALargeSauvignonBlanc . Hope you can rest, cry, do whatever you need to mourn what you thought this part of your life would be like.

I‘m so sorry @AlwaysALargeSauvignonBlanc that you’re feeling down. I feel
I know exactly what you mean, our lives just go on hold for a while. Hugs to you, don’t suppose you even fancy a nice cold Sauvignon …💐

I think this is really normal, I’m sorry you’re feeling so shite. Any chance of seeing if you can get some counselling? I had some and it really helped. You won’t feel like this forever and neither will you be dealing with cancer forever either so you will find a way back to plans and normality. Sending hugs 💐

@AlwaysALargeSauvignonBlanc sending over a big hug.

Hopefully it’s just a temporary pause to our normal lives but in the meantime it just sucks.

@AlwaysALargeSauvignonBlanc I hope you’re feeling a bit better today, but go easy on yourself. Plans get totally upended, the unknown is scary and can send us to dark places at times. I’ve just seen Jessie J has been diagnosed, I feel it’s everywhere.

I was shocked to see that this morning.

Thank you ladies for your lovely messages. I feel much better today and even went to the gym this morning. It's hard being positive all the time isn't it ?

Sad to see about Jessie J. It really is everywhere.

Morning, I'm signing in. Found a lump on 26th May. It's huge, I don't know how I didn't feel it before.
I'm at the breast clinic tomorrow.
Bricking it, but by now I'll be knocked down with a feather if it isn't cancer.
Hopefully I'll know by lunchtime. I've told my husband that whatever the outcome he needs to take me to a pub immediately - the anxiety this past week has been awful, but I'm so grateful that things have moved so quickly!

Hi @PreferablyWithFood. Sorry to see you here but you will learn lots if you need it. Hope you get on well tomorrow.

Hi everyone. I had a long ultrasound session yesterday. They found the other bit they were worried about so took a biopsy and put all the clips in. They didn’t put the special clip in the lymph node (part of the study) as I will have another scan. Feel awful this morning sickness and diarrhoea, so got some immodium as have oncologist at 3! Maybe it was the anaesthetic? Ha ha hope that’s not too much info. Note to self, have some medication to hand all the time!

Quite. It's really poor form to pass the responsibility onto the patient. The doctor should be crystal clear about what they, as the professional in the room, recommend.