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💗

I was diagnosed with invasive ductal back in August, further investigations found some lobular legions too. Having a lumpectomy and reconstruction on 20th November. So far I've been told radiotherapy is on the plan but when or how much I don't know. Chemo depends on what they find when they test the samples removed during surgery.

Rather selfishly delurking for the first time to say it's all gone! I've had two rounds of brutal chemo, lost the hair, lost a boob, getting radio next week, but currently NED. (Oncologist says she doesn't really use that term but I want to do there)
Triple Negative, all scans clear and all cells dead after mastectomy. Got the good news yesterday.

And even more selfishly after that terrific news I'm finding it really hard to be happy about it. I was actually quite rude to the oncologist and couldn't stop crying or speak/look at him. I just don't trust it yet. I hope I do soon. Mum, husband, all siblings and friends v happy obviously so trying to pick up vicarious happiness through them. Therapy on Thursday will be handy!

Best wishes to everyone.

That's pretty much the same as me, chemi might be an option but radiotherapy definitely is. All depends on pathology report.
@VioletandDill that's brilliant news. One thing I've learned through this is emotions don't always match situations. You feel what you feel and that's ok. And it's also also ok to feel completely differently an hour later!

Yay @VioletandDill good riddance to the unwanted lodger!

Good news @VioletandDill . It's very very common not to feel overjoyed/happy/relieved when you get this good news. My good news was back in February, and I still don't trust it ...

I've only just discovered this thread and wanted to put my story on here in the hopes it may help some of you. When I was diagnosed I wanted to hear lots of positive stories!

I was diagnosed age 47, 9 months after giving birth to my son (yes, I'm a very old mum). I was living in Asia at the time but in the UK on holiday, I found a lump and had it checked within 2-3 days. I did wonder if it was to do with breast feeding but it seemed too high.

Fortunately the clinic did a biopsy straight away because, once that came back positive for bc, they did a mammogram that showed nothing at all, even though the lump was easy to feel and almost 3cm. It did show on the ultrasound. At the time they though it was due to dense breast tissue because of breast feeding but now I'm many, many mammogram's down the line I think it wasn't done properly. It wasn't even mildly uncomfortable and we all know that's not usually the case!

It turned out to be extremely aggressive triple negative breast cancer. Grade 3 stage 2b. It was growing at a crazy rate - 90%, and by the time I started chemo which was probably about 3 weeks after initial diagnosis, it had spread to one lymph node.

I did 4 months of chemo at the end of which the tumours had disappeared. I then had a lumpectomy and 2 lymph nodes removed, which came back NED. As it was triple negative they decided to go "belt and braces" and give me 4 weeks of radiotherapy as well.

Chemo definitely wasn't pleasant but honestly not as bad as I was expecting. I felt sick, tired, achy but I also had a non-sleeping 1 yr old... I didn't bother cold capping and lost my hair by about treatment 3. I recommend a teaspoon of manuka honey a day if you start to get mouth ulcers and there is a b vitamin (I can't remember which one) which really helps with chemo-related neuropathy.

The radiotherapy gave me no side effects whatsoever other than feeling tired but again, my by now 18 month old still wasn't sleeping!

I will also say that finishing treatment, even if you are NED, is hard. It's the only time I actually cried in my oncologist's office and she told me that was a very normal reaction. So please don't give yourself a hard time if, at the end of treatment, you're not celebrating in the way everyone thinks you should!

Best of luck to you all, I wouldn't wish this on anyone, happy to answer any questions.

Oh, and I'm now 5 1/2 years clear.

@VioletandDill very pleased for you, even if it will take a while to process x

@anchoviesanchovies Thank you - I love hearing positive stories, it really helps keep spirits up whilst in the thick
of it all x

Good Morning, hope everyone is doing ok🙂
I'm getting my picc line tomorrow and starting to panic a bit about it, feeling so anxious about it this morning.

For those who have had it how did it feel afterwards was it painful once the anaesthetic had worn off, did you need to get a cover for it to shower and wear during the day so it doesn't catch on stuff? And how long did it take to put in? Thanks x

@Lovewine1975 I found the procedure quite easy. It was a bit sore after the anaesthetic wore off, but I left the hospital and went straight to the pub 😂 I think it took about 30 mins from lying down to leaving the hospital. I never really felt mine except for when I got a bit sweaty and it got itchy.

I used to cover it with cling film then a sleeve my hospital gave me for showering. They would give me bits of bandage to wear over it during the day and for sleeping in - you can get some cheap, prettier covers online. I would leave mine uncovered for a couple of hours each day when I was watching tv.

I had to go to the district nurse every other week for it flushing, and the hospital did it in the weeks in between. The hospital gave me picc packs to take to the district nurse cos they never had the right stuff. If you have a reaction to it, ask for the hypo allergenic dressings, I found those much nicer. Some hospitals teach you how to flush it at home.

And count down to the day you can shower without covering your arm - it's the best day ever 😂😂

Good luck! Xx

@SunnyValemin I have been told that I will be going in once a week to have it flushed, the hospital is only 20 mins from where I live so that's fine, and honestly rather they do it than I do!

Is sleeping ok, suppose you just get used to it being there!

I was on Amazon last night looking at all the different colours you can get for covers but will hold fire buying any and see how I get on with the from the hospital, if they work then save me some money.

I'll definitely not be looking at them putting it in tomorrow, but as long as I get enough anaesthetic and can't feel anything I'll be ok, I can be such a baby at times!

Thanks though you have made it all sound a lot better than I was imagining!

@Lovewine1975 yeah I was happier having them flush it than me, it was one less thing to worry about.

I got my covers from annabandana, I barely used them unless I was going somewhere nice (I went to a wedding mid chemo so didn't want the scruffy bandage showing haha)

I didn't watch it going in, I didn't feel a thing honestly.

Sleeping wise, I slept on my back or the other side for a while, then when I was more comfortable with it I managed to sleep on my right side now and then. I just had to have my arm at a funny angle.

I was a bit creeped out by it when I read the leaflets but I loved my PICC, made bloods and chemo so much easier. Hopefully it'll be easy enough for you tomorrow x

@Lovewine1975 good luck with your picc line.

I start my treatment tomorrow and I am a bag of nerves today, yesterday they took bloods so I saw the unit where I will be going.
It was chaos as staff off sick and only one nurse there but she was lovely and said its not always like this, she also told me the district nurse can come out and give me my white cell injections until I am happy to do them or husband is.
Guess it all gets better once it gets underway and you know how you are going to react to it all, there is no easy part to any of it though is there?

I did see a lady there who has neuropathy in her feet she said she was never told about cold mits and socks.
I am due to be there at 10 am so by this time tomorrow it will all be over.
Doubt I will sleep tonight

@SunnyValemin honestly I feel so much better for tomorrow now thank you I will post a little update on how I get on x

@cantbelieveIamhere thank you and be thinking of you tomorrow, fingers crossed that it all goes well for you x

@Lovewine1975 Good luck with your Picc tomorrow x

@cantbelieveIamhere I’ll be thinking of you tomorrow x The anticipation is just awful - this was me last week. Once you get the first one done it’s just heads down and power through. Honestly it’s never as bad as we fear.

This week has been a real learning curve for me. I feel fairly lucky - I’ve had no horrific side effects so far touch wood. I took all my meds exactly as prescribed and thankfully no nausea. The thing that has absolutely flooded me though is the pure exhaustion from day 3 (the first couple of days I was wired from the steroids).
It’s a tiredness I’ve never felt before, I sleep 8 hours solid (unheard of for me usually), wake up, have breakfast and a shower and then I’m asleep again a couple of hours later. I’ve been going for a short walk each day but then will just doze on the sofa for the rest of the day. It’s very frustrating as I’m usually so active and busy.
Still, it’s a small price to pay I suppose and just got to listen to my body x

Hi,
please can I join? Had call back from mammogram and got told it’s pretty definitely cancer. Have to say am in total shock. Had biopsy and ultrasound today.

Welcome @Bitofashock, so sorry you find yourself here but it’s a nice comfy place. Have they told you when to expect the results?

@Bitofashock so sorry you are finding yourself in this situation. The initial shock is always the worst and the waiting is just awful. You are welcome here to vent or ask questions or just simply be in the company of others who have also found ourselves in this horrible situation x

Sorry you got that news @Bitofashock
I've taken an infection from lumpectomy surgery so on antibiotics and sleeping all the time. Unfortunately I have liver and kidney disease as well so a wee bit more susceptible to infections.

@cannaecookrisotto @PoptartPoptart @Somanythoughts thank you so much. I have to wait about 2 weeks as my biopsy/ results and plan won’t be looked at until next Friday. Just feeling a bit shell shocked really cos I didn’t think they would be so sure so quickly but it was very much that it is a dodgy lump. It’s 2cm apparently but quite deep which is why I had no idea.

Sorry to hear that you’re feeling so poorly. I have ulcerative colitis so am a bit worried about the fact my body already seems to hate me and tries to react in all sorts of odd ways so bit worried about what the future holds.

@PoptartPoptartthank you!! And that’s good you didn’t feel too bad hopefully it will carry on like that x

@cantbelieveIamhere and @Lovewine1975 I was thinking about you both today. Hope you’re doing ok x

@PoptartPoptartthanks I didn’t get my picc, bit annoyed it’s going to be on Sunday now got myself all built up for it as well. I did see a chemo nurse though and she talked me through all the chemo side effects, injections at home, what will happen next Friday, got a tour of the chemo ward, so that was all good.
How are you feeling now a week on from yours? xx

@cantbelieveIamherehope your ok xx

Here to report in after my first long day with docetaxal and phesgo.
Luckily for me the nurse I met on Weds was called into work today and said she would look after me today as she had already met me.
She was lovely, the treatments took a while because of pre meds and then the phesgo injection - not as bad as I had feared, a bit stingy in places but okay.

Did cold capping and those that have said the first fifteen mins are torture and then it improves were correct and I agree. Thanks for that info as I looked at it as a count down to get through that bit.

District nurse is booked to come and do injection on sunday and show us how to do it and then maybe we will do them after we have been shown a couple of times.
Just takes the pressure off that for now.

@PoptartPoptart @Lovewine1975 thanks for thinking of me, and thanks for the update on how you are getting on poptart, its helpful and your injection instructions amazing.
@Lovewine1975 sorry to hear no picc line, its annoying when you get yourself
prepared for it, at least you got to see where it will all happen.
I did cold mits and socks and it definitely wasnt as bad as the start of the cold capping, but having all three is intense, however I did notice that lots of the patients were stating neuropathy as a side effect so if it helps stop that its worth it.
Good luck for Sunday, and @PoptartPoptart keep resting and healng, think how much women do all the time and think you have earned a rest, thats what I shall tell myself.
Wish I could have a stiff drink now.

@Bitofashock yes thats exactly what it is, you cant believe what they have told you.
Everyone says this is the worst bit and it definitely takes over with appts etc, I hope they get you all the information and tests done quickly. This bit is shitty but you are in a good place to get some words of wisdom and have a rant.