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💗

Hi everyone, just a quick question as trying to get my head round all the medical jargon and understand, I’m having an MIR this Sunday, and from this get the HER2 results as well as checking my lymph node. What does HER2 mean, I did try googling and got completely confused! Thank you xx

Hi @Lovewine1975! Not a medical expert, just a fellow patient. My understanding is HER2 is a specific type of hormone, and whether it is positive or negative affects the treatment path you are offered. I was ER and PR positive, but HER2 negative. I was given surgery first then chemo etc, but I think if it was HER2 positive I would have had chemo first. Hope that helps - you could always ring the Breast Cancer Now nurses who will probably be able to explain it better. Good luck with the results! X

@SunnyValeminthank you that helps and makes a bit more sense now, could do with a dictionary for medical terms 🤣🤣 she did mention a small possibility of chemo so I guess this is now depends on the result x

@Lovewine1975hi I was diagnosed her2 positive (means hormone driven) so as previous poster said I am getting chemo first before before any surgery and also on Phesgo injections which will continue on after that. I will also have radiotherapy.

@Lovewine1975 they do like to use jargon without really explaining it 😂 I had cancer in my lymph nodes but knew from the start, so I always knew I was having chemo. Hope you don't need it! X

@mightneedalargesnifterI was told originally that I would be having just radiotherapy and surgery by the screening clinic, since the surgeon told me there is a chance of chemo, I am negative ER and PR.

I was HER2+ but had surgery immediately followed by radiotherapy. I then had chemo and Herceptin. I think mine was treated differently because it was literally the start of the pandemic, my tumour was entirely contained so they treated getting that out as the priority. I had to have my first Herceptin infusions with chemo although theoretically I didn’t need it because my nodes were clear. My point is that it can be different to the next person even with the same diagnosis.

Hopefully it won’t be too long a wait for the MRI results so they can finalise my treatment plan and get things started, waiting is stressful

@Lovewine1975When I saw my a surgeon I was advised that her2 is a protein in breast cancer. You can be negative, positive or borderline. My result was borderline so will go for further testing - a fish test. He said it will determine if other treatment is needed. My histology on my nhs app states: her2 fish results to be discussed after surgery 🤷‍♀️

i hope you are doing ok, the wait for the next step is hard going. I had a couple of really bad days at the end of last week and went down some very dark holes thinking it would all get worse. This week I am better, back on the path of one step at a time.

i hope you don’t have to wait much longer for your MRI as knowing what’s ahead will ease the stress.

Thank you. Managed to sleep OK with my PICC. It’s on the side I usually sleep on so looking forward to months of rubbish back sleeping again 🙄🤣

Just want to get this first one done and under my belt to take some of the unknown away
now

@AlwaysALargeSauvignonBlanc I was lucky my picc is on the side I don’t sleep on but no idea what will
happens after surgery which is on the other side! weeks of back sleeping 😱 . As you say once you have one treatment under your belt you will know what to expect. Let us know how you are when you are able to update x

@AlwaysALargeSauvignonBlanc ive been sleeping on my PICC side and it’s been fine (once it had settled in after a couple of days that is). Hope today goes well x

Thanks @Sunshinesmilingthroughthis week generally hasn’t been great but I feel a bit more positive today, MRI is Sunday morning so just try and concentrate on that and not to far into the future or I just catastrophise.

Glad your feeling more positive too, so easy to go down that black hole xx

@AlwaysALargeSauvignonBlanc I slept on my picc line side too, was fine. I used to sort of make a hole in a pile of pillows to keep some of the pressure off it x

I’m home and all went swimmingly !
Was out in 2.5hrs so very impressed with that. The nurse did tell me to not expect that every time !

I was starving when I came out so have eaten well this afternoon. I now though feel like I’ve drunk about 12 cups of coffee. Really wired. Anyone else get this ?

@AlwaysALargeSauvignonBlanc yeah I was always like that for the first few - I was pumped full of steroids for a few days. Take it easy then next few days x

@AlwaysALargeSauvignonBlanc that’s great news. One down already ! 🙌🏻

Yes the steroids send you scatty. I used to walk the 3 miles home from the hospital which really helped. They made my skin a bit blotchy too and left me starving. Then I couldn’t sleep 🙃

So I’ve had

4 x EC chemo (once every fortnight)

then I’ve 12 weeks or which I’ve had 8 so far

Carbo & Pacli (3 week cycle, so pacli/Carbo then pacli, pacli on three week cycle)

I’ve four more of the pacli/Carbo to go (pacli, Carbo/pacli, pacli, pacli)

I feel so drained, I ache, I’ve got brain fog, I’m exhausted.

Please tell me your tips for getting through this, I know I’m on the home straight, but I’ve cried for a long time today, I’ve not done that for weeks.

i also seem to be having more chemo than anyone I speak too. (16 lots on total)

Oh mate, @Tiredandtiredagain , sometimes you do need a little mope and then tell yourself to crack on again. It is majorly shit what has happened to us and it takes grit to get through all the treatment.

give yourself a duvet day if you can, hydrate well, try to get a walk in.

I had 16 chemos too, as did a few ladies on the thread. We are legends, no matter how long our treatment.

Oh I’m so pleased I’m not the only one with 16 treatments, as odd as that sounds!

Thank you for the message.

Did you feel rough towards the end?

I got more and more tired, although had one really good week (fortnightly cycles like you) with good white cells where I was actually allowed to go on a trip to Paris booked for ds2's 25th birthday. This was the week before my last chemo. It was a huge bonus as I had given it up for lost - it was for a one off classical concert, so DS2 and DH were due to go without me if I wasn't given clearance to travel.

They did tweak down my EC as I was pretty sick at the end of Paclitaxel. I think this would have helped my side effects. I set timers to take my meds and made sure I got the rest in. I did try to get out each day, even the grottier days, using my walking poles and only going a few yards on the worst day. The second week I was usually pretty good but made sure I got plenty of rest in.

@Tiredandtiredagain I had 16 chemos - four dose dense ECs, every two weeks, then 12 of paclitaxel, which was weekly. I also completely lost my appetite, and dropped two dress sizes (to a size 6 😱) so I was weak as a kitten.

I was shattered by the time it finished, had a couple of weeks 'off' then I had surgery. It does take it out of you, so be kind to yourself, and rest (I know it's boring, but you need to, your body is going through a lot)

Hello, bit of a request for advice post if anyone can help though I am not exactly sure what I am asking for. Maybe just reassurance.

Long story short, found a lump, mammogram, ultrasound and biopsy followed and it was confirmed a few weeks ago it was breast cancer. Plan was to have surgery next Thurs to remove lump and some lymph nodes as a precaution followed by radiotherapy. I had an MRI this Wednesday and have had a call saying the surgery can't happen next week as I need further ultrasounds and potentially biopsies as the MRI has shown further abnormalities in the same breast and armpit. I am now terrified again. I was diagnosed with grade 3 invasive ductal carcinoma. HER2 negative. Has anyone had a similar experience? The waiting is so hard just want the treatment to begin.

Hi@BettyMagoo I hope you are ok. I was booked in for lumpectomy awaiting further scans etc and when they found another mass in the same breast, plus confirmation of Her2. They decided to cancel the surgery as they need clear margins if going ahead with lumpectomy. They gave me a new plan moving forward. Everything moves very quickly and they will discuss everything with you once results are available. It’s a horrible wait for answers though . 💐for you.