Likely breast cancer after ultrasound- thread 3

[SpartanRunningGirl]

Welcome. Previous threads :

Thread 1
Thread 2

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).

Two 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💗

@PoptartPoptart . So glad it all went well. One done 🙌🏻

@PoptartPoptartits definitely the fear of the unknown and having so many preconception's of what chemo will be like. I think next week when I get my picc line I’m I’ll ask them if I can try the cold capping. Hope you don’t feel bad today x

@Lovewine1975 - I was told by the unit nurse that I would be bald in two weeks if I dont cold cap, which is different to what the registrar told me, she siad it would thin a bit!.
Also unit nurse said with docetaxal I would only have to have the cap on for half an hour afterwards so I am going to do it all, cold cap, cold mits and socks.
I am going in on Friday 7th so my nerves are very bad and arent better at the thought of having to inject myself for seven days, i hate injections so i dont know how this is going to get done as i cant take a run up to myself or shut my eyes and just jab?

i have to say its very frightening whatever, my husband is getting stressed at the thought of keeping an eye on my side effects and has loaded up all the emergency numbers and I have been hysterically crying but its not making it go away......

@cantbelieveIamhereit’s literally a emotional rollercoaster, I really hope on the day it’s ok and not as bad as you think, and half an hour for cold capping is great, I was told I will have to wear it the whole time. Just think this time next week you will have had your first chemo over and done with.

My husband is also worried about infection not so much catching anything from him but our daughter who’s 13 and always seems to have colds in the winter. I was told as soon as she gets in from school for her to have a shower to get all the germs off!

@Lovewine1975no maybe didnt explain properly, have to wear cold cap before, during and half an hour afterwards apparently some drugs you need to stay for an hour or hour and half after treatment ends with cold cap on.

Anyway too late to worry about infections here as son has come home from work with a cold....
I am going to have wine tonight and stay away from google.
hope you have a good weekend.

@cantbelieveIamherehave a good weekend as well, I’m also having wine making the most of it whilst I can!

@cantbelieveIamhere and @Lovewine1975
Have a large glass of wine for me too please 🍷 😊

I honestly know how you are both feeling - I don’t claim to be any sort of expert (only started yesterday!) but I can totally relate to the feelings of dread leading up to chemo. I was a complete wreck and cried daily (sometimes hysterically) and I was getting really concerned about my mental health.
I truly feel so much calmer today, now that first session is out of the way.

I was told to call the emergency 24 helpline at any time if I am worried. Nothing is too trivial and they are always happy to advise apparently. That is what is keeping me calm at the moment - if in doubt I’ll give them a call.

@PoptartPoptart thank you for your encouragment I have indeed collapsed emotionally this week since I got the phone call telling me treatment will begin.

I have cried more since weds than in the last five weeks, I dont know where its all coming from and like you hysterically sobbing, so yes I guess that makes us normal.

hope you dont need to call anyone and the next thing is letting us know how you get on with injection - hopefully its straightforward for us all.

definitely will be drinking wine on behalf of all who cant tonight I shall drink to everyones recovery.

@PoptartPoptartI’ve had to stop my HRT and pill in the last week so don’t think that’s helped with my emotions being all over the place, also had the Covid and flu jab this week. But the closer it gets the more anxious I’m getting. I’m generally really positive annoyingly so but this is hard, I definitely put a brave face on it. But I’ve had the odd cry, so just be glad when 14th Nov arrives to get the first one out the way.

@PoptartPoptart
Just checking with you saying you had a headache, did you pop a headband on to protect your forehead from the cap ridge? If so then ignore me but if not this is a must.

I’m glad you’re feeling better after getting the first out of the way, how are you feeling side-effect wise?

@cantbelieveIamhere
I also struggled with the injections for the first couple of days but you will get used to it I promise. Like anything else you’ll become accustomed to it.

At first I was very slow and took my time whilst dreading it whereas now I pretty much just fire them in. I’ve found that waiting for the alcohol wipe to fully dry really helps with any slight sting you might get and depress the plunger as slow as you need to for it not to sting.

I also don’t keep them in the fridge. The pharmacist told me that once dispensed they can be kept out, and that really helps too.

I’m so sorry to hear you’re having a shit time in the run up to starting treatment. I’m sending you a big hug. When you imagine the start of treatment, try to think of it as the day you begin to wage war on the fucker 💪🏻. I was terrified of chemo, whereas now 7 weeks in it’s literally my favourite day of the week. I look forward to it, makes me feel like I’m in control a bit and I enjoy catching up with the nurses, having a chat with the other inmates and I use it as an excuse to eat naughty snacks.

For those on EC, I’ve heard that it can play some havoc with your mouth and a tip is to take some ice chip/cubes in a flask or thermos, and suck on them during the infusion. Apparently really helps keep any soreness at bay :). I think an ice lolly or ice pops would work too!

Also try not to wash your hair on chemo day after capping. I’ve stopped blow drying and straightening mine too to minimise any stress to my hair. I’ve not lost any yet but I’m still on PC, that might change when I get to EC but for now it’s doing its job!

Sending everyone warmth and strength on this chilly Saturday evening.

@cannaecookrisotto yes I used a soft fabric headband to protect my forehead. I think the headache was a combination of not really getting much sleep the night before (kept waking up due to worry) and also the cold and the tightness of the cap. But it really was quite a mild headache in the great scheme of things - I regularly have much worse after a day at work!

So day 2 for me has been ok so far. I’ve been taking my anti sickness meds religiously as instructed, and so far I’ve been ok 🙏 The most I’ve felt stomach wise is a very mild discomfort - like a mild tummy ache - but that disappeared after about an hour. No nausea so far thankfully 🙏

I’ve been drinking as much water as possible too. The first few days on EC your pee is red (totally normal - the infusion medicine is red so it is your body getting rid of it) The nurse said that drinking lots of water helps to flush it through your body. I drank about 3 litres yesterday and again today, and now my pee is only slightly pink.

I made the mistake of reading the side effects of the injections on the patient information list (I start tomorrow) so now I’m freaking out about those a bit 🤷‍♀️

I’ve got my biopsy results tomorrow and I’m terrified, I don’t want to walk into that room. How did others find the confirmation appointment?

They told me after the mammogram/ultrasound/biopsy appt they strongly believe it’s cancer . . . I’m still not ready to hear that confirmed though. I want them to be wrong, but know deep down they won’t be.

@TheStarsAreComingOut thinking of you tomorrow x
Make sure you take someone with you for support.
Believe it or not, you’ve already been through one of the toughest periods - the waiting. Whatever the outcome, you will have a plan moving forward and even though it can be really scary, knowing what is coming is better than waiting and fearing the worst case scenario.
Do let us know how you get on x

@PoptartPoptart Thank you. I will update when I know. Don’t think I will be sleeping much tonight.

@PoptartPoptart well done you. One down. Keep taking those puke tablets!

With the filgrastim, keep pressing the plunger in until the little spring retracts the needle. I didn’t quite get that right to start with and didn’t get the full dose in. My immunity was ok though somehow.

@alpenguin sorry that you have to find yourself here but pleased you’ve found good support should you need it. Do not google!

@TheStarsAreComingOut all the very best tomorrow.

@dancingwhilstfacingthemusic -
“With the filgrastim, keep pressing the plunger in until the little spring retracts the needle”

Yes, I think I messed that bit up with the injection last night. I pulled the needle out of me and then the spring retracted and some solution shot across the kitchen worktop lol 😂
So do I just keep pressing the plunger while it’s inserted and the spring will retract out of me - is that’s right?

@cannaecookrisotto thank you for your tips about the injections, that is going to be the icing on the cake as I am just not sure I am going to be able to do them.
do they show you what to do?

husband has offered to do them but he needs to be sure of what he is doing before i let him jab me.....

i have drunk lots of wine on everyones behalf over the weekend and am still absolutely petrified.

I have got my mits and socks they look ridiculous not sure how they will help but we will see.

@PoptartPoptart brave you having done your first injection - tell the truth did it hurt? did they show you what to do?
How are you feeling?

I am dreading it all I think I am going to be the biggest baby with all this, I just wish I could run away until its all over

@dancingwhilstfacingthemusic does that mean you keep pushing the plunger and then the needle pops out when done?

@cantbelieveIamhere they demonstrated how to do the injections with a dummy needle before I left the infusion suite. The written instructions are also pretty comprehensive with diagrams as well.

I’d read a lot of threads over on the Breast Cancer Now forums and got some good advice. This is what I did:

7pm - I took 2 paracetamol and 1 Loratadine (antihistamine tablet). The brand name is Clarityn but you can just buy generic Loratadine which is cheaper. A lot of people swear by doing this as they say it really helps with the bone pain that the injections can cause.
I also used EMLA numbing cream from the pharmacy. I put a big blob on the area on my stomach and put some cling film on the top to keep it in place.

7.30pm - I took one of the syringes out of the fridge to bring it up to room temperature (as advised).
It says to check that the solution in the syringe is clear, with no cloudiness or floaty bits. But in reality I couldn’t really see the solution as the syringe was only small and there were stickers covering most of the tube 🤷‍♀️

8pm - I took the cling film off and wiped the area with an antiseptic alcohol wipe. Took the protective cap off the syringe and held it at a 45 degree angle and pushed. Once the needle was in I pressed the plunger down slowly and steadily (I read somewhere that it is more likely to hurt if you do it too fast).
Then I took the needle out and that’s when the automatic protective spring activated - so I’m not sure if I took it out too soon?

Honestly it was ok. It didn’t hurt at all due to the EMLA numbing cream. It wasn’t pleasant having to inject myself, but I can see how quickly it will just become another normal part of this whole shitty experience and soon I probably won’t even bat an eyelid.

I hope this helps a bit 🙏

@PoptartPoptart thank you so much for the details that will be really helpful
I shall try to get some of the cream you mention.
Really really appreciate you taking the time to pass this on, so thankyou.
I am sure you are right it will probably get easier with practise.

@PoptartPoptart I've taken a screen shot of your description for the injections its great! And like you say you will soon enough get used to it, well done though 🙂

Hope everyone is doing ok as can be. I can totally appreciate how nerve wracking and daunting chemo is, just know that you will get through it. Take it one day at a time.

I don’t love injections but I found the filgrastim to be very manageable, for what it’s worth.

@TheStarsAreComingOut hope you’re ok after your appt today.

Just wanted to leave a note here about cold capping in case it’s of use to anyone going through it. I started with 3 x EC and lost I think about 80% of my hair, mostly on my crown. I nearly gave up on the cold cap as it was getting quite painful the more hair I lost, but kept going because of potential regrowth I might get when on paclitaxel. Sure enough, my head is fully covered with hair again, no bald patches, and I still have 4/12 sessions of paclitaxel to go. I’m frankly amazed given it’s probably taken those hair follicles at least 6 weeks to recover and presumably they started to recover after my last EC session. It’s not the hair I started with and I’m sad about that, but I’m not bald and I feel like I’ve got a jump start on getting my long hair back.

Similar to @MonOncle , I started with 4 dose dense ECs, and lost loads of hair. I continued cold capping through the 12 paclitaxels, and my hair started growing back during this time.

With the injections, I have to say I found them completely painless 🤷🏻‍♀️ so I have no advice! I took loratadine - I did still have some bone pain though, in my upper arms, weirdly. And loratadine works like a sleeping tablet for me, so I had to take it at night!

I didn't use cold mitt things - I was mostly on my own for chemo, and welded to my Kindle, which got me through. Nothing that would stop me using that was going to happen.

@MonOncle that’s really good to know about the hair x

Hi checking in. Got diagnosed with invasive lobular ++- 22nd September and had lumpectomy and one lymph node removed on thursday. It's uncomfortable and tiring but not painful. Waiting on pathology results on the 10th for more of an idea of treatment plan. Any one else got invasive lobular? I keep hearing there's no real specific treatment for lobular which is scaring the crap out of me!

@PoptartPoptart yes, that’s how mine worked earlier this year. I would pinch up a chunk of tummy skin, give it a brisk rub (no Emla) and then do the injection. My swears got very creative, as did my “get me back to (insert venue of choice” each time.

@Somanythoughts sorry you’ve had to find yourself here. There will be people along to share experiences.