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💗

@Bimblesalong take it easy today, glad you’re ok

I got my MRI results yesterday, as I previously mentioned, I have triple negative breast cancer.

Over the course of seven rounds of chemo my tumours have gone from 3 cm and 1 cm to basically half the size. A partial response. I was led to believe that they would just “melt away” and a complete response was expected, I’ve been quite distraught but trying to keep my feet on the ground and not freak out too much

I know, I am luckier than some, who have no response at all. I’m so scared of dying and leaving my poor kid on his own 😭

I had similar MRI results @KurtShirty. Also triple negative, shrunk from 6cm to 5cm after half my chemo. But I also had an ultrasound a few weeks after, which showed considerable changes to my tumour and the radiologist was really positive, so try not to panic too much. Are you due surgery next? My team keep telling me the pathology is the most important thing, and not to focus too much on imaging as it’s only one piece of the puzzle.

Thanks so much @Purple1181 , I need these pep talks! Surgery next, then radiotherapy, then inevitably chemo tablets and continuing immunotherapy. I feel that I’ve been given unhelpful and mixed messages from some clinicians, this has calmed me down a bit again. Also I think maybe unrealistic to expect a complete response/feel so disappointed. I’ve been really neutropenic so think this has fucked me up. I’m glad your radiologist has been upbeat , really positive to hear

@KurtShirty I’m so sorry that the results were not what you hoped for 💐 Sending love

@KurtShirty its completely understandable, I have to give myself a pep talk quite often! I have the same plan as you, surgery next month and then radio, immuno etc. I’m dreading being told I’ll need oral chemo too, but mentally preparing for it. What a bloody year. I think I’m still waiting for it to all actually hit me

Morning, hope you are all ok. This is my week for starting
chemo. Picc line going in Thursday and treatment on Friday. I was called for an injection last week and didn’t realise it was the antibody (Phesgo) and had to go into the chemo ward for it to be administered. It was a bit of a shock! I was hanging around for hours (bit of an error there!) it was really disconcerting and it hit me that this is my reality! Anyway this means that treatment is out of sync so hoping that can be sorted out as I don’t want to have to go in for that treatment separately if possible. Pneumonia jab at GP’s today as recommended by oncologist. McMillan was great and gave my daughter books for grandson and she ordered a comic type one from Amazon. He’s 7 and was ok with the info given. He has made me a bookmark and is making me a loom bracelet! I think I’m ready, but I’m probably not!

Sounds like you are all geared up and ready @mightneedalargesnifter . I hope everything goes as well as it possibly can for you.

I totally get what you mean about the chemo ward. I walked by the one in my hospital a while back as I was trying to kill time before an appointment. It literally took my breath away when I looked up the corridor. I actually said to my daughter, I don't ever want to go in there.

I hope once you get in and get settled and have some creature comforts, it's not as bad as anticipated.

A question for those of you that didn't need chemo (or those that did but found themselves thinking similarly to me)...
Was there any element of concern over the decision you didn't need it ?

I'm hoping to finally know my treatment plan next week and as much as I absolutely don't want to have chemo and everything that comes along with it, I do feel like I might be concerned about the decision to not have it and almost strangely feel more re-assured of a positive outcome if it did need it.

Maybe I'm just weird. Absolutely messes with your head this lark doesn't it !

Hi @AlwaysALargeSauvignonBlancsuch an interesting question. I was so relieved to not have chemo as part of my plan however I was concerned that my treatment was complete enough, especially as I know a couple of women with similar cancer profile to me who did have chemo. Age was the difference there and tumour grade. At the end of the day we trust the professionals, and as much as I don’t like it - I do have tamoxifen for systemic prevention and had radiotherapy for local prevention. Best of luck with your next steps … I’ve lost track of where everyone is in their treatment! Xx

Hope everyone is ok.

I got my oncotype score today, a sobering 43 which means there is no question about chemo, I’m having it. Up until now my mindset has been ‘this is really shitty but I’ll get through it’ but now I’m wondering if this thing will really get me and I will have a short life. Ugh. More tears. I’m not really sure how to broach chemo with my 8 year old.

I get my PICC line put in tomorrow. No start date yet which is a big worry as I’ll be 3 months post-surgery on Friday but I’m guessing it can’t be too far away if the PICC is going in.

Sorry to hear that @MonOncle I guess it’s strangely easier to accept when the evidence of the benefit is there. I was the same with an onco score of 32. I had read about borderline scores and people having to choose whether to go ahead or not.

have they told you how many treatments and the drugs they will use? I had 12 paclitaxel on a weekly basis, then 4x EC on a fortnightly cycle. I cold capped and also used cold mitts / socks.

I was very anxious but it wasn’t as bad as I had feared. My picc line was a friend to me too.

all the best to you too, @mightneedalargesnifter you’ll soon be one down.

To those still waiting for next steps, I hope you soon get some direction and a plan.

A few months down the line you’ll be where I am now, thinking wtaf was that and being through it.

@MonOncle sorry to hear you're heading for chemo. At least you’re getting every chance to make sure there’s no stray cells left to make sure it’s gone for good.

I used a few books to explain chemo to my 5 year old. She liked ‘cancer party’ the best, and occasionally goes back to it. I’ve heard her using the explanations from the book to explain my treatment to her friends. The PICC helped too - having something she could see and relate to the medicine that I go to hospital for really helped (I haven’t had my surgery yet - chemo first for triple negative).

Sorry to hear that @MonOncle . I hope it will help you to have a plan.I think for all of us the big scary thoughts can emerge and then get batted away in daily life. Tears can help.

I had a borderline score for chemo given to me a few months ago and I decided, on balance, not to follow that path.
so ‘just’ had three surgeries resulting in a full mastectomy and had 30 sessions of radio.
TBH statistically I know I made the right call, each and every day I’m filled with ‘what ifs’.
I don’t know if I’ll live to regret my choice (poor turn of phrase so I apologise) or not but I’m left wondering.

however there were many other factors in play to my choice which I feel comfortable with.

im realising more as the weeks go by after finishing my treatment plan that I might benefit from post cancer therapy.

ive found that being a ‘cancer patient’ doesn’t end when the treatment does.
there are loads of questions for me that either I didn’t feel the need to ask at the time or I didn’t want the answers to.

it’s only now looking back ,over the past year, I’ve allowed myself a little space and to draw a breath.
im slowly starting to acknowledge that I have a lot to process and how it has affected me.

i think I’m not there yet, not by a long chalk.
but hope with a little time and reflection it will become nothing more than a foot note in my life

Thank you all, I’m a bit more level headed today. I even managed not to cry when I got my PICC yesterday and the nurses were being lovely (kindness is my trigger!!). 💪

@Bimblesalong I was told that I’ll be starting with 3 x rounds of EC (every 3 weeks) and then 12 x weekly paclitaxel. And you’re right in that the oncotype removes any wavering doubts! I’ve been given the cold cap info so I’ll definitely give it a go. Did you arrange your own cold mitts? The nurse I spoke to said it’s not something they do.

@Purple1181 thank you for the book rec, I’ll seek it out.

@drivinmecrazy therapy is something that has been on my mind as well, I’ve never had it before but I think it will probably do me well to pursue it.

Glad you are feeling more level headed today @MonOncle and well done for doing so well with your PICC yesterday.
I've got a feeling I am going to be following very closely in your footsteps. Our diagnosis are virtually identical.

A plan can be worked through @MonOncle Do order your “little lifts” box for chemo if you haven’t already, and get some fruit sherbets in (m and s do a nice pack).

I arranged my own cold mitts. I bought the suzzipad ones from Amazon and sold them on Vinted when I’d finished. I couldn’t get s/m so used the larger ones which made no difference. I took them to the hospital in a cool bag with ice packs in. I only had one pair so held the ice packs for the end of the cooking period once the gloves started to defrost!

@AlwaysALargeSauvignonBlanc yes we have lots of similarities, let us know how you get on with your appt next week! I hope you’re recovering ok.

@Bimblesalong thanks so much for the cold mitt info. I found out that I start tomorrow so I haven’t had time to order anything but I’ll look into it for the next round. I’ve legged it to Boots today to get the things I need for the cold cap and that will have to do!

All the very best @MonOncle this time tomorrow you’ll be one treatment down. Be kind to yourself, rest and hydrate a lot! The first 15 mins or so of cold cap can be a bit uncomfortable but then it tends to settle down. I had a load of podcasts on my phone which kept me entertained.

Good luck tomorrow @MonOncle I got my Picc line today and start treatment tomorrow as well with the cold cap. No one mentioned mitts so will look into that too. I’ll be with you, hey we may even be in the same place !!

Good luck tomorrow @MonOncle and @mightneedalargesnifter

I find sipping warm squash (I take a thermos bottle) helps with the cold cap. I’ve had 15 treatments so far and dread to think how many hours of the bloody thing I’ve done, but it’s been so worth it. I have 1 chemo left, and my hair still mostly looks ok if I don’t part it.

Thanks@Purple1181 didn’t think of that so will do that tomorrow. Great tip, I’m so glad that it’s worked for you. 15 rounds sounds gruelling. Nearly there 💐

Hello to anyone still awake. I haven’t posted until now but reading the thread has been both helpful and inspiring.
I came out of surgery this evening and failing to get to sleep but not too uncomfortable.
Had my mammogram in April and three biopsies since. so far they have found a 6cm area off DCIS so have had to have a large lumpectomy of 25% of my breast and reconstruction from under my arm.
as it is so large they have given it wide margins in the hope that they are clear. I have read around the subject (only academic papers!!) and am trying to put out of my mind that there is up to a 70% chance of not getting clear margins. The consultant has already talked about having to go straight to mastectomy if that is the case.
I don’t feel I can properly talk to my DH about it as he has been off work with depression (unrelated) and although he is being really supportive he wants me to keep a positive attitude and just can’t talk about the details at all.
really sorry for the rambling post. Blame it on the last dregs of morphine and a desire to get things off my chest. So to speak!!!

Good luck today @mightneedalargesnifter too.

make sure you’ve got some layers if you’re cold capping, I had a T shirt so they could access my picc, used a poncho, cardi and a blanket.

@Purple1181 thats brilliant that you’ve one left. I must have been on the same regime as also had 16.

@Tearsofthemushroom fingers crossed for you. I ended up having 3 surgeries, opting for mastectomy / reconstruction on the last one. Think I was really unlucky. I had IDC and an area of dcis found after my first surgery. Can’t believe it really, looking back, but just dealt with it one stage at a time. You’ll get a lot of support here from people who really get it - have a wail or come celebrate the wins.