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💗

Well, it’s a year to the day since I made the first post on the original thread and I can’t believe that soon we’ll need thread 3!

It’s amazing to look back a year and remember some of those feelings I had in the run up to going for my ultrasound and then when I was told it was likely breast cancer at the appointment. What a day! I can say in honesty it’s probably the worst I felt through the whole process - waiting for test results and plans to form was much harder than having my treatment. I know I was very fortunate to have a straightforward cancer diagnosis. I was able to move from surgery straight to radiotherapy. And I know many of you have much more complicated plans in place.

Last night I landed back from a fabulous holiday Italy, I cycled and ran and enjoyed the sunshine and felt very alive and grateful for everything that’s happened to me, and the people around me who helped me get through it. That includes those on this thread.

My body is not back to ‘normal’ my mental health is not back to normal and my attitude to life is not back to normal and I don’t want to go back to normal - I’m in my new normal and appreciating everything so much more.

I’m really glad this thread exists for all of us whatever our situation with breast cancer, and I hope it’s been a comfort and a source of support and advice (and laughs and WTF-ery!). It certainly was for me and continues to be so.

Sending love to everybody. Xx

Good to hear from you @spartanrunnergirl. It's good to hear how you feel looking back on the year, and how you assess things as they are now.

I'm very thankful you started the original thread, and glad you continued it on to a second one. I'm nearly a year from diagnosis too. Just about a year ago on 7th October, I was heading for my five year mammogram after a previous scare, expecting it to be normal, but really struggling because I had to walk back into the hospital building where I worked and I was off with severe burnout. That started the rollercoaster and I was diagnosed at the end of October.

I found your thread early in November and have appreciated everyone's wisdom and kindness along the way 💐

@Lovewine1975 glad to help!
yes my treatment is standard, have a look at Keynote 522. It might not be exactly the same for you as yours as you’ve already killed the fucker. A lady I talk to has TNBC but has the carbo every other week whilst I’m weekly. I’m not sure if you’ll need the Keytruda (immunotherapy) as the oncologist told me if I had surgery first this wouldn’t be part of treatment. My tumour was 9cm 🫣. After 3 weeks it’s about 6cm now. So it’s very reassuring to feel it shrinking away!!

@spartanrunnergirl thanks from me too, I got a lot of support just by reading the threads you’ve made, it’s so comforting here ❤️. It’s lovely hearing of women coming out of the other side of this shit show and actually getting back to life rather than a stream of appointments and the bastard anxiety that plagues me every time I hear the letterbox 😂.

The second worst day for me (not including the day of biopsy news) was when I got alllllll the letters in the post and seeing it in black and white “stage 3, high risk of invasion, close to chest wall” sent me over the edge. I rang BCN and asked they don’t send me any letters unless I ask for them. It was either that or weld the letter box closed!!!

@Lovewine1975 I cannot believe how similar our stories are. We both had our surgeries on the same day and thankfully like you they managed to get it all and no lymph node involvement.
I also have TNBC and I’m starting chemo around the 22nd October. They want me to have 8 rounds (4 EC and 4 P) every 2 weeks. I did ask why, and the oncologist said that she preferred to use an accelerated regime, but if I struggle they will change it to every 3 weeks.
I’m going to try cold capping but if it’s too uncomfortable then I can stop.
I’ve just booked to get my eyebrows micro bladed too so it won’t be obvious when they go. It’s expensive but I think it will help my self esteem.
I’m actually really petrified of chemo and what’s to come. I feel like such a baby but I keep crying. I’m so happy the cancer is gone but chemo is so daunting. Feeling and being sick is actually my worst fear, and I know they have good anti sickness medication these days, but it still scares me so much. Does anyone have any positive stories or top tips about nausea and EC-P?
Radiotherapy after chemo is also on the cards for me too.

@cannaecookrisottothats fantastic it’s shrinking and the chemo is working 😘 I’ll be glad to see the oncologist and know what is happening, and get a date for when I’ll get started, I’m gonna Google Keynote 522, thank you xx

@PoptartPoptart that’s such a coincidence with our surgeries and now chemo! I am scared as well, it’s just so daunting and not knowing how your going to react to the drugs how sick your gonna be, I’m with you on that. Think you’re going to be starting yours before mine so please post if you feel up to it and let us know how you got on. We can all support each other through this xx

@Lovewine1975 absolutely xx

I was also reading something interesting on the Breast Cancer Now talk forum about fasting before chemo and for a few hours after. I need to do some more research but from the limited amount I’ve read, it seems fasting could help reduce side effects and actually make the chemo more effective in killing any stray cancer cells.
Like I say, I’m not advocating this as I really don’t know enough about it - has anyone got any experience of doing this or has read anything positive about fasting and chemo?
I might try and email my oncologist to get her opinion as I only read about this last night.

I had 4 x EC and 12 paclitaxel, and never felt sick at all. I did completely lose my appetite, but never felt sick. Can't say my lack of eating 'helped' with any other chemo side effects though!

So this may be a stupid question, I am still waiting to find out what type of cancer I have, it will be two weeks on tuesday since biopsies. They said to me three to four weeks from biopsy day to getting results and a plan for treatment.

Meanwhile I feel awful, my boob is really swollen, I am in pain and the terror grows with everything I read. Are you supposed to feel this bad? I am really tired but getting basics done, washing, ironing etc. Do they really tell you nothing until week 4. I am imagining the very worst at this stage.

I am currently on the same course as you will be on. Have competed EC, had first paclitaxel today. Feel rough for approx 5 days post infusion, feel ok after that. I cold capped, but lost about 80% of hair in week 3. EC is very harsh on hair, so get some hats in just in case. I’m so far happy with the every 2 weeks, gets through it all quicker. Have been able to go for a run etc when I’m feeling ok.
i would recommend getting a picc line, will save your veins.

I tried it, felt ok for first infusion. Felt really unwell fasting for the second, so I stopped. Can’t say that it had any impact on post chemo nausea. I have read the study, and apparently it tock a long time to get the results as people kept dropping out.

@PoptartPoptart I was shit scared of chemo as well! I found it far less worse than my expectations.

I’m on PC first so can’t talk for EC yet (I’ve heard this is a bit more side-effecty than PC but they told me I’d be rough on PC and I’m not 🤷🏼‍♀️). I do Pax and Carbo every Weds.

I did read about fasting but I’ve lost a lot of weight and the Oncologist told me it’s important to eat what I want and when I want. She said some weeks I might feel like eating lots and go for it to make up for the weeks my appetite drops. She said the last thing I need is to lose too much weight and have treatment delays. I’m finding that my appetite is wild, I think it’s the steroids. I eat all day during treatment too. The biggest thing I think is helping me is staying super hydrated. I drink at minimum 3L of water a day and have an electrolyte shake. I think the water is helping to flush it around my system. I try and stay active when I can the day straight after treatment to help my metabolism do its job as well. I’m not doing exercise or anything, just making sure I’m up and about round the house and walking to do the school run rather than drive. A gentle walk at my own pace.

This is how my week looks:
Weds - treatment day - start about 10am after pre-meds and cold cap/socks/mitts fitting. Finish around 2:30pm. Cold cap has to stay on for 90 minutes after final infusion (take a headband like the one you’d use for putting makeup on to protect your forehead from the edge of the cap, and a hat to pop on before you leave as your hair will be wet).

I feel fine on the Weds evening, I think the pre-meds and steroid hoist me up. Can have a very normal evening. I get sent home with 3 Fligrastim injections (to be taken for 3 days starting the following day), 8 Dexamethasone and 8 Ondanestron 8mg tabs. I take one of the Ondanestron in the evening and one twice a day for the next day and a half. I have some metocloperamide to help nausea in between but I’ve not needed them so far. The Dex are two in the morning and two at lunch the following 2 days.

Thursday - I’m wired. The Dexamethasone are like a wonder drug, I work all day (from home). I eat what I feel like but keep up the hydration.

Friday - I have the 6 month old to look after so no work but I can parent her normally. I’m a bit tired but at mild-hangover level.

Saturday - see Friday

Sunday - tiredness increases to a bottle of wine hangover level but I can still function.

Monday - I’m reset and feel normal :)

Some tips - if you get the Filgrastim injections, they can give you some bone pain. I bought generic Loratadine and take one a day every day. Don’t ask me how but it stops the bone pain. It’s an antihistamine and my oncologist told me to crack on if I wanted to give it a go. It did the job.

If your hospital don’t offer the cold socks/mitts during PC, I recommend ordering some off Amazon. Neuropathy can be debilitating so it’s defo worth investing in them.

Take the drugs as prescribed. Even if you don’t feel sick. Rest when you need to. Don’t get too hung up on things like fasting etc. Hydration is key.

Sometimes on my tired days I feel hungry but can’t be arsed eating. I have some of the Huel full meal replacement milkshakes in the fridge to grab when I know I need something down me. Huel also do a “greens and antioxidants” shake powder full of your five a day and lots of nutritious shite. I have one of these a day to make sure I’m getting good stuff in too. Some days all I want to eat is cake and chippy, so I feel less guilty after my greens 😂.

You’ve got this ladies for sure ❤️

@Notjustabrunette when the oncologist said it would be every two weeks I was worried that I wouldn’t have enough time to recover in between infusions, so it’s good to hear you are getting on ok with that regime.

I’m due to be fitted with a port, rather than a picc line, I think there are pros and cons to both but at least it will save my veins.

It’s a shame that the fasting didn’t work for you - can I ask how long you fasted for beforehand and after? I was thinking 24 hours before and then maybe 6 hours after if I can manage it, but the last thing I want to do is make myself feel worse.
Nausea and vomiting are my absolute worst fears.
I’m not surprised people kept dropping out of the clinical trials - chemo must be hard enough without starving yourself as well.

Well done for completing EC. I’m interested to hear how the paclitaxel compares and if there are any significant differences in side effects. I think I’ve read that paclitaxel is a lot gentler than EC.

Thanks for sharing anything you feel able to.
Wishing you all the best for the rest of your journey.

I fasted for 36hrs before chemo. I had dinner on Wednesday night, then chemo on the Friday. Worked fine first time, second time I woke up in the early hours of Friday feeling awful (headache, nausea etc), so had to eat something. During the whole of EC I was never actually vomited. It was more of a general feeling. The meds are pretty good.

@cannaecookrisotto your post made me cry - in a good way though (and to be honest it doesn’t take a lot to set me off these days!)
Thank you so much for sharing your story so far and for all the tips.
I think the main reason I am so petrified of chemo is because we only ever hear the horror stories, so your post has given me hope that it might not be as awful as I’m imagining xx

@Notjustabrunette 36 hours is a long time! Not sure I would manage that and I’m not surprised people give up. Like I said, chemo is bloody tough enough without adding starvation into the mix.

Good to hear the anti sickness meds are effective. I just have this awful fear of laying in bed feeling constantly sick (a bit like when you have a stomach bug or something) and being like that for days. I definitely wouldn’t cope with that.

@cantbelieveIamhere you’re stuck in limbo and it’s the worst bit. Once you get the biopsy results and a plan your feet will start to touch the floor.

My boob was so sore. It hurt anyway (my lump was 10cm 🫣) but after the biopsies and up to my first chemo session it was massively inflamed, so painful, it felt like it was meshing to my chest wall and skin and I was in full on panic mode. It’s like the biopsies really pissed it off. I was leaking fluid from the incision site too so I think I had some seroma going on. You might have a bit of infection, it could be worth giving them a call and mentioning to see if they think antibiotics might be worth a go. If you can tolerate some Ibuprofen/paracetamol they can help with inflammation too. I can’t have ibuprofen as they upset my stomach so I was chewing high strength co-cocodamol that I have for my back. I got my results back within 2 weeks. I had biopsies on the 18th August and was supposed to go for follow up on the 10th September. At no point throughout the investigations did they suspect BC. They told me it was a galactocele (a giant milk cyst) and only took biopses because they don’t see them that large very often.

I then got a phone call saying my appointment had been moved to the 1st September. I asked why and they said “Doctors schedules have changed” so I thought nothing of it. So I didn’t have that horrible biopsy waiting period because they told me it was nothing to worry about. So the news it was TNBC on the 1st was a fucking shock. I then had 2 weeks of scans (CT, MRI, US on LN, kidney function, heart scans), a scan result appt with the breast surgeon to confirm clear CT, then appointment with Oncologist on the 15th September. Her eyes nearly fell out when she saw the size of my twatty tit and I was having my first chemo on the 17th, two days later. So yes it came up to about a month all in from biopsies to first treatment.

Anyhow, all this to say, my lump was 10cm, in lymph nodes, TNBC and all I could think was “how TF can this not have spread everywhere. It’s grade 3 and aggressive as shit.” I had been pestering my GP for a referral since May, but she kept fobbing me off with blocked milk and telling me to hot compress. I had all the staging scans post-biopsy results and it hadn’t spread! I’m stage 3 due to the size of the tumour and lymph involvement. I don’t know how many lymph nodes, I don’t want to bloody know. I’m full of rage that I wasn’t referred back in May when it first appeared. It grew very quickly but had they found it earlier it might not have got to the nodes. But who knows. Shoulda woulda coulda.

It’s so easy to fear the worst at the beginning. I genuinely thought I was getting the worst news after each scan, because my life had already tipped upside down, north felt like it became south and I felt like “anything is possible”. I lost that comfort blanket of “it won’t happen to me” and I didn’t know how to manage all my feelings. I couldn’t. I ended up with diazepam in that waiting period. But after each scan came back and the full picture started to come together, my axis started to rotate back to north. I had a PLAN. And the plan involves getting rid of the fucker, preventing reoccurrence and living a long and happy life :). Whatever type it comes back with, you will have the best possible treatment and be well looked after. I’ve had 3 weeks of PC and my lump is half the size already. I’ve got an appt with oncologist on Monday so she can have a grope too.

Can you get on the phone to them and ask if they are any closer to your results? ❤️.

@PoptartPoptart I was scared of nausea the most too but the Ondanestron is power :)

I’m glad I helped you feel better. Like I say, we’re all different and I could be lucky but I’m convinced the hydration for me has been important. I’ll be sure to let you know how I fair on the EC, I’ve heard it’s more potent.

I’m just about to delve into a large bowl of chocolate cake and double cream whilst everyone is in bed as my reward for getting my kids though the day alive and fed 😂.

Tell them you’re really worried about nausea and that you don’t want fobbing off with Cyclizine. Make them go straight to the good stuff.

Another one - I’ve found for the Filgrastim injections (if they give you these) wait 30 seconds after using the alcohol wipe to dry completely. Good grab of flab and don’t rush. Remove from fridge an hour before using. Press plunger slow as you can. It only hurts when you try and plunge it in quick. By the end of your first 3 days it’s just routine. My daughter enjoys watching me do them the little weirdo.

@cantbelieveIamhere Sorry you're in the horrible waiting zone 🤗

It does take a while, as the biopsies need to be processed and then they are discussed at their MDT alongside any scans you have had, so that your treatment is tailored to you as carefully as possible.

As @cannaecookrisotto says, it is worth calling and speaking to your breast care nurse - they will be able to talk things through and may be able to give you a better idea about appointments. Sorry about the swollen breast - I had quite bad swelling and bruising as I had a couple of sets of biopsies, but it did gradually settle.

@spartanrunnergirl I too am coming up to a year since my diagnosis and almost immediate double mastectomy. I feel different inside and outside but am working, leading my life and have just had a lovely holiday. A long way from weeping in my hospital bed. Thoughts to all who are in different parts of the process. Waiting and uncertainty are the worst.

@cannaecookrisottothank you for your post about your daily routine, it’s given me hope and a bit of reassurance that it may not be quite as bad as I imagined. Also lots of handy tips which are so helpful for us newbies. I will certainly be drinking plenty of water if that can make the side effects not as bad xx

ThankS so much @cannaecookrisotto for your detailed reply it has REALLY helped and also how your treatment is going.
.
Today I actually feel much better, so I wonder if I did have an infection after the biopsies - I had six done and one she hadnt put enough anaesthetic in and yes it hurt so maybe thats why I have been suffering giant left boob and pain.

I am grateful for everyone who is posting here to help everyone else and wish you and me all well and speedy recoveries, its all so scary and I hate to not be in control of whats going on.

@cantbelieveIamhere You've hit the nail on the head - it’s the lack of control over what is happening to us that’s so hard.
I am trying to be proactive regarding practical things in the run up to my chemo, in order to feel a bit more in control and organised. Things like getting my eyebrows micro bladed, getting my hair cut a bit shorter, visiting the dentist, ordering stuff from Amazon like some soft hats, etc.
I’m still petrified of chemo, but I’m trying to distract myself by getting on with practical stuff that I can control.
Best of luck xx

Just a tip for anyone waiting for chemo or surgery - having a cancer diagnosis means we are eligible for a free winter flu vaccination and a covid vaccination.
I had mine this morning at my GP surgery - one in each arm!
My oncologist recommended that I get them done before chemo as I will be immunocompromised during treatment.
I plan on being a bit more mindful where I go once I start chemo, and I’ll try and avoid too many people in indoor crowded places if I can, but the vaccinations will just give me a bit of extra confidence.
The nurse also said that the people I live with (hubby and son) are also eligible for the jabs too, in order to protect me.
Just a tip in case it helps anyone x