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💗

@Frolie I'm sorry you find yourself here.

@quietmaelstrom I’d had a few months of letrozole and similar symptoms. They swapped me to anastrozole to see if it would be any better (it’s not 🙄).

(Dancingwhilstfacingthemusic)

@Frolie I'm sorry that this has happened to you. They do check absolutely everything irregular and MRIs are known for picking up 'false positives'; so hopefully it will turn out to be nothing sinister. I had to have investigations over the summer for areas on a mammogram. It's a horrible, horrible waiting game. Fingers crossed for you, and as others will say, the not knowing is the worst. I don't think pain is generally thought to be a symptom of breast cancer though cysts can certainly be painful. HRT can cause 'fibrocystic change' according to the doctor who was assessing me. Hopefully your breast clinic appt will come very quickly, mine was within four days which although this scared the life out of me, was really the best way. They will do mammograms and ultrasounds initially.

@Frolie I am keeping everything crossed for you that it’s something and nothing. As others have said, the waiting and wondering is the absolute worst part. Things usually move pretty quickly so hopefully you won’t have to wait too long.

I am having my port fitted tomorrow which I am slightly panicking about now. I’ve decided not to have the sedation as I’m worried about feeling groggy and sick afterwards. So I’m going to try and power through with just the local anaesthetic.

The silly man from radiology who phoned me freaked me out by telling me to bring an overnight bag ‘just in case’. As my friend said, maybe we should all walk around with an overnight hospital bag, ‘just in case’ we get run over by a bus 😂

@cannaecookrisotto I see you’ve had your port fitted recently - how has it been for you?

Sending positive Sunday night vibes to everyone.

Hey @PoptartPoptart
I did! And it’s healed fine no problems at all. The first couple of days I noticed it there, I couldn’t sleep on my right side (which is the side my baby is in her next2me crib so that was a bit of a faff having to sit up to pop her dummy back in every 3 mins) but I don’t even know it’s there anymore, can sleep however I like. Skin glue is still on, I keep absently picking at it, I’m a picker!

The port itself is absolutely amazing, bloods and chemo is no longer an exercise in “stab and find a vein”. I was so nervous about the first use but it was brilliant, quick pushing sensation and it’s in. They tell me to take a deep breath and in it goes.

You’ll be fine during fitting as well, are they giving you sedation? I had sedation but would have been alright with local but I’m not going to turn down some free Fentanyl and Midazolam anytime soon so rather enjoyed the pissed feeling :).

Let us know how you get on tomorrow!

Just read you’re not having sedation, my chemo fog is strong today, so sorry! My attention span is like a goldfish.

You’ll be fine with the local, I said afterwords the sedation was a bit overkill for what a non-event it was.

@cannaecookrisotto I’m so pleased to hear you had a positive experience with your port - you’ve made me feel loads better about tomorrow, so thank you x

@PoptartPoptartgood luck with your port fitting tomorrow, hope it’s all fine!

Question for those of you who had preventative/adjuvant chemo how soon did you get your first appointment with Oncology. I was referred 2.5 weeks ago and not heard anything yet, my lumpectomy is nearly 7 weeks ago now. I’m probably just being impatient but the waiting is just driving me insane! Thanks xx

Further to my last post Oncology have rung this morning and I have an appointment tomorrow morning, I'll start stressing about that now!😂

Thank you for your kind words. I’m sorry you’re all having to go through this, the journey no one wants to be on.
My breast clinic appointment has come through for Wednesday. Much quicker than I thought. (Which is making me worry!)

Mine came through very quickly too so try not to read too much into that.
I saw my GP on the weds and had an appt through on the Friday for the following Tuesday.
The wait now of the biopsy is hard ( I could see a 2cm lump on my mammogram.)
Hand holding whilst we wait x

Well I had a round of biopies in March and a titanium measure put in place against the lump (which wasn’t malignant but something they need to keep an eye on) and I’ve now found another one. Waiting to see the specialist on 4th November. This will be lump no 6 so I’m hoping it’s the same as the others, but this time I have pain both in the lump and surrounding it.

Keep your fingers crossed for me. I’m getting fed up of spending all this time in a mammography machine but thankfully they’ve all been benign so far.

So I had my port fitted yesterday and it was ok. The worst bit was the two hour delay because the procedure before me had overrun.

I didn’t feel any pain due to the local anaesthetic, just a bit of pulling and pushing. The whole thing took about an hour.

I didn’t have the sedation as I really didn’t want to feel groggy afterwards but it was fine without it. @cannaecookrisotto you were right about that!

I'm feeling quite sore today so have taken some paracetamol. I’m due my first chemo on Friday, but apparently they won’t be able to use the port for that first session as it needs to be in place for a week before they like to use it.

@Lovewine1975 thinking of you today - I hope your appointment goes well. Let us know what they say and what your treatment plan looks like.

@Frolie good luck for your appointment on Wednesday. I don’t think there is any rhyme or reason for how quickly appointments are given sometimes. I think it can depend on each individual hospital, staffing, cancelled appointments becoming available, etc.

@LoudSnoringDog thinking of you while you wait for your biopsy results. The waiting is always the hardest part - everyone always says that, but it’s true.

@MedievalNun Lump number 6 - that sounds tough - a real emotional rollercoaster. I’ll be keeping everything crossed for you that it’s nothing to worry about, like the others. I’m no expert, but I think pain is associated more with cysts usually, rather than anything more sinister. Hoping it’s benign like the others.

@PoptartPoptart so glad having your port fitted went ok and it was painless, often think the thought of these things is often far worse than the actual procedure.

My appointment went fine the Oncologist went through it all with me and I am starting chemo on 14th November, 6 cycles, 1 every 21 days and EC-T chemo. Having a Picc line fitted on 7th November, which I am less scared now reading how well the port fitting went for you. The worst thing is I have to stop taking my HRT so bit worried how that will go, before I was on it my moods were all over the place and an anxious mess, and my DH was on the verge of divorcing me 😂

Hope everyone else is hanging in there and sending positive vibes 😊

@Lovewine1975 I’m glad your oncology appointment went well and you now have a plan in place.

It’s strange that our treatment plans differ seeing as our diagnosis are so similar.
I’ve found that a lot, talking to people. I would feel better I think if there was a more universal protocol.

When I asked my oncologist why she had decided that I needed 4xEC followed by 4xPaclitaxal every two weeks, she just sort of smiled and said that’s what she thought was best for me. I have to accept that of course, but I do wonder if a different oncologist would say something different.

Why do you have to stop your HRT seeing as your cancer isn’t hormone positive - did they say? Does it interfere with the chemo drugs?
I am on the mini pill (primarily to stop dreadful periods rather than for contraception) and they said I can carry on taking it seeing as my cancer wasn’t hormone related. But I wonder if a different oncologist would say something different 🤷‍♀️

Again, I know I need to just listen to the experts, but sometimes I can’t help question the decision making because I want to understand their reasoning and know the ‘why’ behind their decisions.

You’ll be fine getting your PICC line. When I was there yesterday (waiting for hours) there were three ladies getting them done and they were in and out in no time. Each said it was fine, very straightforward and no pain.

@PoptartPoptartI have to also stop my mini pill which like you I’m on for painful periods - another coincidence! But he said they could interfere with the drugs, but that the chemo will stop any periods. Don’t even know if I can have periods anymore it’s been so long, hope not!

I see what you mean though why do I have to stop taking everything but you’ve been told it’s ok to continue. I don’t really know enough about the chemo drugs to understand it all if I’m honest

@Lovewine1975 I don’t know enough about the drugs or understand them either 🤷‍♀️

It just feels like every oncologist, doctor, surgeon, etc. seems to have their own opinion rather than following a specific protocol.

@Lovewine1975 I wouldn't worry about the picc insertion, you'll be in and out pretty quickly. I went to the pub after I had mine fitted 😂 There are some risks with them (as there is with everything) but mine was fine, just a bit itchy now and then and it makes getting bloods and chemo a breeze x

@SunnyValemin thanks, that is really good to know as I am due to be going out with my friend the day after having it fitted, want to make the most of my last few days before chemo starts😂What is sleeping like, does it get in the way do you have to sleep on the opposite side? x

Hello all. Still waiting here for the biopsy results. Just prompted by a post below, the consultant at the hospital said I should come off the combined pill immediately. Has anyone else had this? Did you then go onto a none hormonal contraception?

@LoudSnoringDog I am hearing lots of differing advice about this. Some ladies have been told to stop all hormonal contraception immediately (I think this is more common if your cancer is hormone positive) and some seem to be able to carry on taking it.

I have triple negative breast cancer, so no hormone links, and I have been told I can carry on talking the mini pill.
However, another poster @Lovewine1975 who is also triple negative, has been told to stop her mini pill - the exact opposite advice to what I have been given.

It’s all very confusing and it seems to just depend on the opinion and preference of each individual consultant, which isn’t very reassuring. I would prefer that the advice was consistent and based on medical evidence - or at least based on a majority consensus of professionals.

Did the consultant explain the reasons to you?
It’s so hard in the moment to think of asking the right questions. We are bombarded with so much information and it’s hard to think straight at the time. I always come away from appointments with a gazillion other questions.

Sorry I haven’t really been of any help as I’m just as confused as you. I hope someone can come along and offer some better advice x

@LoudSnoringDog I saw the Oncologist yesterday and basically to come all medication which was mini pill and HRT, he said that it would interfere with the chemo. I think as @PoptartPoptart said each consultant make there own decisions. That was for chemo though and your not at that stage yet so I wouldn't worry about that and if you do get diagnosed it will also depend on what type of breast cancer you have.

Hello all … I’ve taken the liberty of prepping thread 3 https://www.mumsnet.com/talk/cancer/5431579-likely-breast-cancer-after-ultrasound-thread-3?utm_campaign=thread&utm_medium=app_share

I’m one year on from the start of my cancer treatment this month. I had my mammogram results last week with “ no abnormalities noted”! Which I’ll take as a win.

Sending love to all of you here. Spartan x

@poptart
I have TNBC too and they told me to stop taking contraception immediately, I’m going to query this with my oncologist because she was adamant. I did think why, when my BC isn’t hormone fed.

I’ll ask and keep you posted what they say for science :)

The consultant just said that the pill contains estrogen and this can increase risk? I wasn’t really listening properly as he had just said “something isn’t right..” and I couldn’t focus then

I was hormone positive and told to come off it immediately.