Likely breast cancer after ultrasound - thread 4

[spartanrunnergirl]

Hi all!

Thought I’d start thread 4. I’ll put links to the previous threads below.

Welcome.

The original thread 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).

Three full threads 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 💗)

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 breast cancer diagnosis.

You are not alone.

This is the awful club - full of awesome women💗

@dancingwhilstfacingthemusichow are you finding the Ribociclib? Are you taking it with letrozole? I will start both when chemo finishes and feeling anxious about it.

I am having my lumpectomy and node removal next Thursday. Am swinging hard from being ok to panic attacks.
I have to be in the hospital at 7.30 in the morning and I think I will go into full panic mode. Can I ask for drugs straight away?
My blood pressure was so high just for the anaesthetic appointment that I had dizzy spells.

@cyclamenqueen thanks, feel exactly the same. Know I’m comparatively ‘lucky’ and don’t remotely want to minimise the experience of others who’ve been through the absolute ringer, but it’s still scary and alien and it doesn’t feel lucky to have any kind of cancer diagnosis.

had the magseed this morning, then sentinel node injection and op tomorrow. Havent yet read the bumpf from hospital because I can’t face it, but that’s my job for tonight.

Sending hope and strength to everyone x

I think I’ll be sticking around for some company if that’s okay.
The radiologist seemed pretty sure we are dealing with a cancer. I had two biopsies and clips - one on the main lump I could feel and another on an abnormal area just above. Have a results appointment for the 18th (unless they come in sooner).
Apparently the lymph nodes look normal, which I am clinging onto as a small positive.
I feel oddly a bit relieved and maybe a bit numb. Trying to stay off google. Reading about everyone’s personal journey is really helping me right now. Thank you x

I hope it goes well , I had the injection in the morning too, they really looked after me and I felt very safe and went home early evening , I did have some nausea and dizziness so they kept me an extra few hours but that’s normal for me .About to go to the GP for 10 day check on dressings . Honestly I am pretty swollen and sore but hoping that’s normal and will resolve , then physio next week and I see surgeon again on the 21st. I have concluded that you just have to let the rollercoaster take you and not try to resist and control it.

@cancerycaramelbear don't worry too much, you've been through the super tough stuff. I've got friends who are having absolutely no side effects from Letrozole. I was rather achy in the joints from it, so they switched me to anastrozole. I'm still a bit achy on that but keeping moving is key. I think part of the aches and muscles which needed strengthening were down to the effects of the chemo too.

Ribocyclib - so far (touch wood) not too much in the way of side effects. Not sure if they're any different to what I'd had on anstrozole but I seem to have a little bit of eczema, which is ok if I keep up with moisturising. I also have a slightly claggy mouth - the best way to deal with that is for me to eat breakfast before taking the Ribo, and to keep up with fluids. I've also discovered "mother root" which is a lovely non alcoholic drink I have with tonic water most evenings - seems to cut through the nonsense. Absolutely nowhere near the sort of mouth impact that intravenous chemo had on me.

I'm so pleased to be able to have these extra protective factors after what was such a difficult experience.

Good luck tomorrow @dibly You'll go to sleep and when you wake up, you'll be on the way to getting out of this unwanted detour in life.

@MidLifeWoman is it worth giving your consultant's secretary a call to share your worries?

@MidLifeWoman i had a stash of diazepam from after my Dad died last year, and have been self medicating when I’ve felt the need for the last few weeks- it definitely takes away that ‘I can’t breathe’ panic. Worth a try?

Thanks for all the well wishes, this is a lovely group. 💐

Starting to panic about the hormone blockers, I’ve got both Crohn’s disease and adenomyosis, so osteopenia and (sorry tmi) atrophy are already problems, plus I’ve got a stubborn stone to lose already. I know it’s small world problems in the big scheme of things, but every time I have meds they kick off another problem. Really hoping for a sympathetic consultant who looks holistically at both the best preventative meds while taking concerns into account.

Thank you so much for this, it’s really reassuring and helpful!

Hello! Just joining in as I have an ultrasound tomorrow due to a lump showing on the mammogram. It is most likely a cyst but obviously still a bit worrying. Also can’t discuss in real life as we have a very strong family history and I know it will terrify my mum.

Joining as it’s so helpful to read others experiences and support.

Diagnosed with invasive lobular in March and had lumpectomy, LICAP and sentinel node biopsy 1st April. Actually found ILC as well as LCIS and DCIS. Healed well but waiting now to meet the oncologist and results of the oncotype test. It hadn’t spread to lymph nodes and the fab surgeon got clear margins, so I’m hoping to avoid chemo and go straight into radiotherapy and then hormone blockers.

Struggling with the mental anxiety the most. And I just find it so much easier to talk to those who have personally had it.
Wishing everyone the best in this shitty journey x

@Tonychocaholic I’m glad you are managing to avoid chemo. I had my oncology appt yesterday and am now expecting to start chemo ( 6 cycles) late May/early June followed by radiotherapy followed by drugs.
i realise I am in the honeymoon period now as in the last few days I have felt considerably better after the mastectomy with reduced pain and exercises much easier. Almost normal! I’m not looking forward to the next stage but just determined to get through it.

@rhubarblover totally get the trepidation with chemo. Hopefully you can do something nice before it starts?

I don’t know yet if I’ve avoided it or not. Surgeon told me the oncotype result can sometimes throw a curveball. I just hope I get oncologist appointment soon.

Good luck with your chemo and journey. Each step at a time x

@rhubarbloverI also had that lovely honeymoon period when I was pretty much recovered from surgery and waiting for chemo to start. I made sure I did lots of nice things. Chemo when it came was not as bad as I had anticipated and second round has been mostly fine, once I knew what to expect. I’m only having four cycles of EC, having discussed with the onc the risks vs benefits of the docetaxel bit related to an existing condition. @Tonychocaholic keeping fingers crossed for low oncotype for you. Mine was the reason I’m having chemo, but they told me 70% of women don’t need it in the oncotype scenario.

I hope everyone is doing ok.

@Tonychocaholic I was in the same situation as had had my oncologist appointment yesterday - my Oncotype was low (14) so I'm able to avoid chemo. To be honest I'm shocked, I had prepared myself for the worst.

Hi all , hope everyone is ok … after waiting a whole month without very limited communication in that we can’t tell you anything, I now have my appointment on the 14th .. suddenly seems very real . I still don’t even know what it is although at my initial visit before tests I was told to be prepared….

@Tonychocaholic that is really good news re no chemo. You must be relieved. @Firework73 fingers crossed for you for 14th. The waiting is the worst.
i have a pre- chemo cardiogram to look forward to on Friday. It seems I discover a new hospital department every week :-)

Hi everyone
I had diagnosis of invasive lobular grade 2, stage 2 - last summer. I'm in my 40s with young kids.

2 lumpectomys
15 radiotherapy ended in Feb
Tamoxifen was a disaster! Bad reaction

Waiting to try ovarian suppression and letrazole.

Also dealing with frozen shoulder and weak arm.

I've changed user name since my other posts.

I've just finished my radiotherapy - invasive lobular cancer - stage 1, grade 2, small tumour, clear margins and no lymph nodes involvement and no more treatment planned other than Letrozole and annual checks, but I still veer between terror of recurrence and an imposter syndrome style belief that I shouldn't say anything because others have it worse

I feel for you @VividDeer . That must be tough to go through all that with young children. I hope you have lots of support.

Can I ask how much radiotherapy you had . I was diagnosed with invasive lobular grade 3 stage 1 in April. Had lumpectomy at end of April waiting for results as nd tgg he run have said I will definitely have radio but no idea how much .

Just formally diagnosed yesterday but was told at initial biopsy/mammogram appointment that it was likely cancer. Cancer is ER/HER2 positive and tumour is 4cm. Plan of action is chemo first which I was totally not prepared for. Lumpectomy and then radiotherapy and probably hormone blockers. Feeling very overwhelmed atm. I have CT scan tomorrow and oncologist and heart scan next week.

@Aprilcherry04 it’s a lot to take In isn’t it. It is normal to feel overwhelmed. I still am and I am 5 weeks post mastectomy. My chemo starts at end of May.
You’ll become familiar with all sorts of hospital departments.
I was hoping to avoid chemo also, but unfortunately I need it.
Just take it one step at a time and only read as much about it as you can cope with.

I had my results today . It’s stage 2 cancer … two options were a mastectomy or they want to try a lumpectomy first and take out the lymph nodes to see if they can avoid a full mastectomy. Treatment radiology and a tablet ? Possibly chemo too but too early to tell . I have to smile as the surgeon is working on my timeline that I want to go on holiday in the last week of Aug so I’m in for the op next Tuesday. Feel a bit relieved that it’s not spread but also a bit like I’m watching myself go through this outside my body … does that make sense xxx

That absolutely makes sense. At that stage (I had a very similar diagnosis) I felt like I needed to distance myself from my body and found it really difficult to touch my breast or look at them. It was a reminder of the sense of threat I felt. That went away after surgery - I had a therapeutic mammoplasty and sentinel node biopsy. It’s good you have a surgery date and it’s soon. Is it an ER+ve HER2-ve cancer? In that case they would maybe do an oncotype test to decide on chemo. Sending you lots of positive vibes for the surgery.

This end I’m halfway through chemo but having another week before the next round because my autoimmune condition has flared badly. Very fed up but realise it’s a wise decision.

It’s this if anyone can put it into easier language for me
grade 2 invasive er 8/8 PR8/8 HER2 negative breast cancer