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💗

My appointment yesterday was a mixed bag and I don't really know how I feel tbh.

The great news was that of 16 nodes taken, only 1 was positive. Best possible outcome there and really happy with that.

Not so great news is that they didn't get clear margins on one side so I need a re-excision. Not thrilled about this obviously and now at a standstill answers / plan wise for another 4-5 weeks.

My surgeon couldn't give me an answer on chemo - on one hand he said no chemo when I asked about the 1 lymph node but then when I queried my high level Ki-67 which I understand to be the aggressive nature in which the cells change, this leans into chemo. So six of one half a dozen of another at the moment.

Back to waiting again.

Oh @AlwaysALargeSauvignonBlanc sorry to hear this, frustrating about the margins and having to go through the surgery again, not what you need. Good news re nodes though. Will you see an oncologist to follow up in the chemo in the mean time or do you need to wait for re excision before that? Shitty thing this disease and never a straight line xxx

@AlwaysALargeSauvignonBlancIm so sorry you have to go through more treatment 💐and a hug from me

@AlwaysALargeSauvignonBlanc sorry didn’t sbswer your question. No date yet as still having more tests. My friend came round this morning who has had the same treatment I’m having. She said to ask to have a port inserted. I’m going to ask. It sounds like a good option rather than the cannula ? Anyone else think so? Thankyou

I’m sorry to hear about the margins @AlwaysALargeSauvignonBlanc , I really feel for you having to go through it again. And even more waiting…

My surgeon was very evasive about chemo until my last appointment with her, I’m not sure why. It’s frustrating as it gave me hope that I wouldn’t need it and as it happens the reasons given were there from the biopsy results appt.

I was also told the same thing about oncotype, ie that not everyone gets the test as other markers can help inform as to whether chemo would be worthwhile. I think they have ordered the test for me though.

I’m feeling fine about Monday @AlwaysALargeSauvignonBlanc thank you, what will be will be and I will most likely just do what is recommended.

Also interested in port vs cannula @mightneedalargesnifter , would be good to hear what you decide.

@MonOncle will do. Hope your appointment with the oncologist goes well on Monday.

Really sorry to hear you need a rematch, @AlwaysALargeSauvignonBlanc been there, it’s frustrating to have to go back but part of this crap disease and it’s crazy swerves as we try to evict it. Hope you get to do a few things for you and stay distracted as possible in the meantime.

The port makes things easier in terms of setting you up and blood tests are easier too. I wasn’t offered one until my last two treatments so I declined. I didn’t have too many problems with cannula but on one occasion it had to go between my fingers and that was really horrible. I don’t regret not having one but I may have done it if I’d had longer treatment and/or it was offered at the outset. There were sometimes delays if less experienced staff had trouble with finding a vein but largely it was ok.

@AlwaysALargeSauvignonBlancI’m sorry you have to have further surgery. Actually when I had mine there was a very young woman (20’s) next to me who was back for her third op 😩. I was a bit surprised she’d not had a mastectomy. I have to say they did warn me from the outset that there may have to be more surgery but I was fortunate that my surgeon got it all in one go and my tumour was contained. I think it’s more common than you’d think with breast preserving surgery. Absolute arse for you of course but you’ve done it once and you know what to expect. Such good news about your nodes too ☺️. Try and focus on the positives and getting rid of the sodding thing 💐

@AlwaysALargeSauvignonBlancSorry, I wanted to sound positive and that this is common but ended up talking about somebody having a third surgery which you didn’t need to hear 🙄. What I was trying to convey is that this happens to a lot of women. The one I refer to had very small boobs and I think they were trying to preserve as she was so young. Sorry, I didn’t mean to sound negative at all.

@AlwaysALargeSauvignonBlanc Sorry to hear you’re facing more surgery. I had 1 positive node and my lump was grade 3. I’m 40 and haven’t been through the menopause. So according to oncology - those were the 3 key factors that meant chemo was recommended for me.

@mightneedalargesnifter@MonOncle
I have a PICC line in my arm at present whilst I’m undergoing chemo. I’m 6 out of 8 cycles down. Whenever I went for blood tests they could never find my veins! I was also told that EC (which was the first chemo drug I was on) causes your veins to be even more difficult to access so a PICC was recommended. I’m glad I’ve got it as it means all my treatment goes straight in and my blood tests come from it no bother.
It’s a bit of a pain because you can’t shower without a big plastic sleeve on your arm and every week the dressings have to be changed and line flushed.
But honestly it makes it alot easier on the day of chemo and for blood tests. No needles everytime. So I would recommend a PICC if you’re offered one for chemo. Lots more info about them on macmillian website.

@chococakey thanks for your response. The oncologist said I would get a PICC line as veins are poor but I think I’m going to ask for a port. Seems much easier, no flushing etc and no worries about covering it up. I’ll see what she says. So
many things to have to think about 😱

Thanks everyone for your lovely words.
@TheFormidableMrsC please don’t stress, I know what you were trying to convey. Luckily I’ve got a fair bit to work with. I think that’s part of the disappointment too, my boob actually looks pretty unscathed at the moment and my scar is barely noticeable so a shame to think that it hasn’t worked.

@chococakey similar story then. I am 40, 1 node and not yet been through menopause. Mine is grade 2 ER+ PR+ HER2-

@AlwaysALargeSauvignonBlanc I’m exactly the same as you other than 0 nodes and a little older at 46. I’ve been told no chemo but will have extra boost of radiation to the tumour bed.

I’m also ER+PR+ and her2-
So I had my surgery first like you. Now I’m going through my chemo. Next for me is radiotherapy and then I’ll be onto hormone treatment of some type. But I don’t know what yet as they said that’ll be discussed when I have an appointment towards then end of radiotherapy.

It is disappointing to be facing more surgery. I also understand how the waiting is one of the hardest parts and now you face more waiting. In the early days of my diagnosis it’s what I struggled with the most. The waiting and waiting for the next appointment and information.X

Hello to everyone I know from the first thread 👋

Thanks for continuing the thread as you have @spartanrunnergirl. I think it's great for that horrible time when people are waiting for results (and of course for all of us in this club afterwards).

Sorry for falling off the thread for a couple of months (my story is below for people who don't know me). No disasters to report, thankfully. I finished the radiotherapy and all was well. However, the combination of radiotherapy fatigue, medication side effects and ongoing burnout meant that I just couldn't keep up. I think I'd also reached the point where I needed to stop thinking about the cancer for a while!

It's good to see people doing well and getting through things - don't want to name names as I will only forget some. Thoughts with all those who have joined since I was last here - I've just had a long catch-up session 💐

[Grade 2 ER+ HER2- lobular cancer left breast diagnosed in October after callback on 5 yr mammogram following 'abnormal cells' in right breast; surgery December and January; radiotherapy March; now on tamoxifen (letrozole planned for later). All this happened when I was already off sick with severe burnout from NHS job; still off work]

Waving @quietmaelstrom Brain fog meant I forgot to log into the new thread as Dancingwhilstfacingthemusic! I’m 12 weeks post chemo and gradually rebuilding. Still very tired, working very part time and growing patches of hair in odd places post chemo. Glad to be on the other side of the heftier treatments.

I have my annual mammogram on my one boob next Friday. I think I’m blocking out thinking about it.

Good to 'see' you Bimbles/Dancing (which do you prefer?) Glad you've come through the horrors and are starting to rebuild.

All the best for the mammogram (at least one will be less uncomfortable than two!)

Either is fine. It’s a weird time eh? I’m dealing with all sorts of thoughts about mortality and uncertainty, particularly as the anniversary of my dad’s death comes up. But, the sun shines and the flowers bloom.

Hope the tamoxifen is tolerable. I’m on letrozole for five years and rather achy with it. I’ll put up with it for the risk reduction though.

Lovely to hear from you quietmarlstrom. I’ve also been a bit quiet this thread as I’ve been keeping my head down ploughing through my chemo. I’m off to number 7 out of 8 today. So it feels like the end of chemo is in touching distance now but it’s been a long slog over the last couple of months.
I’ll be having radiotherapy once my chemo ends but I don’t have a start date for it yet. I’ve been told I’ll have a 3-4 week break once chemo ends before it starts.
So looks like I’ll be having it over the school summer holidays which isn’t ideal but I’ll have to find a way to make it work.
Been having some weird pains in my boob and the area where the lump was removed is still so hard. I have spoken to the BC nurse and my oncologist but neither seems concerned. They said it’ll just be scar tissue healing but sometimes I can’t help worry about every twinge and pain when my mind runs away with me.
It’s hard to keep positive but I’m trying my best and just plodding on through x

Think I’ll be the same as you when it comes to my first mammo. I completely understand the term scananxiety now!
I think it wouldn’t be so bad if you got the results whilst you were there. It’s the waiting that’s always so difficult.
But wishing you all the best for it on Friday x

Hi all I have my recall next week following my first mammogram, anxiety not great. Can I please ask if you don’t mind, did you ladies suffer with any breast discomfort/strange sensations permanently or intermittently prior to diagnosis? Thank you

I did have some pain. My tumour was in my nipple and it was uncomfortable, particularly if somebody hugged me or it was pressured in any way. I think it was just in a sensitive spot. It didn’t hurt all the time, just intermittently. I put it down to peri as I’ve always had sore boobs during the cycle. However, the pain stopped once tumour was removed.

What I will say is that cysts can be uncomfortable too and I’ve also had a few of those. Pain is not usually an indicator but it would be wrong to say that it’s never a symptom. I also think that in this horrible wait time, our bodies do all sorts of weird things from the underlying stress. I really hope you have nothing to worry about.

@TheFormidableMrsC thank you for replying. I seem to get intermittent very low level discomfort/unusual sensations in different parts of my left breast. I also have 20 year old cosmetic breast implants. I just have an awful feeling it’s something nasty. I’m self employed and have a horrifically busy work day the following day, and finding everything overwhelming with this unknown world, i literally feel like I’m in shark infested waters.