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💗

@Ted27 your scan experience sounds awful. I had a port, but they never used it for MRIs or PET CTs with contrast. They had to battle my little veins! I don't know why they didn't use the port, actually.

Edited to add : just looked it up. Apparently it would have needed to be a power injectable port to be used for contrast, so mine can't have been the right kind. I hope yours is!

@Lovewine1975 congratulations on your last chemo I have just had my last chemo too. No bells to ring in my unit. I just staggered out.

Last one and chaotic nurse, four cannula attempts very long day, shortage of staff etc etc, anyway its done. I have barely any eyebrows but lots of hair apart from on crown which doesnt show unless you send a drone up. Battled through cold cap, cold mitts and cold feet and have barely any neuropathy so for those starting out on chemo, think about protecting your hands and feet.

good luck with your recovery

I haven’t got a radiotherapy date yet.

There is now some confusion as to how many Paclitaxel cycles I’m having. I was originally told 9 (weekly) but now they are saying maybe 12.

I’m due to have #8 this Friday so in my mind, next week was my last one.
To be told today that I might have to have an extra 3 has really floored me.
If they had said that from the beginning then that is one thing, but to be told at this late stage is really upsetting.
I’ve got to wait until next week to see my usual oncologist.

Counselling is a very good idea and it’s on my list of things to arrange.

During treatment we just soldier on trying to get through it the best we can. We are in survival mode. It’s only afterwards that our brains can begin to process everything and then think counselling will definitely help

Hi, I hope you don't mind if I join. I am awaiting results after a biopsy on Monday. I am 42, found the lump last Friday, contacted the GP but was told to wait and see and call back if it didn't go away after 3 weeks. I wasn't patient enough so I went through BUPA.

I was told at the ultrasound that it was a solid mass and the only way of knowing if it was cancer was to do the biopsy. She didn't give me an indication either way about what she thought it might be. I didn't ask, I don't know why. I think I was a bit surprised with everything as I had assumed it would be cyst.

They've already booked me a follow up MRI but I'm hoping/assuming it's just to make sure it's on the diary rather than because they think I will definitely need it?

The lump feels kind of long and horizontal, about 2 cm long maybe.

Welcome @Switchdto the club nobody wants to be in. Your GP's response was appauling.

Yes I was a bit surprised about that. I didn't even have a phone call with the GP, they just texted me to ask how long I'd had it, then said to wait 3 weeks.

That’s absolutely appalling. I would be making a formal complaint in writing to the practice manager.
its important so that it never happens again.

I’m so sorry that happened to you.

Gawd @Switchd that is terrible. I hope you soon get results and fingers crossed for good news.

hearty clapping fo those finishing chemo. I second the cold hands / feet thing as well as cold capping. I didn’t use cold therapy for my first two treatments and have a measure of neuropathy. The cold treatment stopped it in its tracks.

@Switchdjoining the chorus that you should complain to GP practice, that’s really poor. I also hope you get good news from the results.
Congrats to all who have come to the end of chemo! It seems like such a long and arduous road for me at the moment, know I’ll be having chemo, not sure when it will start or how long it will last. I had clear margins and no lymph nodes, so hoping that means they’ll offer the TC regime (from my reading, that seems less scary). Reason for chemo is a high oncotype score. I seem to have shifted my main emotion from fear to anger and the occasional outburst of crying. I’m also quite grumpy with poor lovely DH. Yesterday we had to get an emergency tradesperson to the house and I found that enormously stressful - clearly don’t have much reserve.

It’s lovely and sunny outside, so I’m off to get some vitamin D. Sending strength to all of you.

@Switchd please complain. This is appalling care. The lottery on whether we will get good/ shit care or not depending on GP response is really unacceptable. I feel so lucky that the locum GP at my surgery felt my small minor change of a “dimple” appearing under my boob, had the good practice to refer me straight to the breast screening service. I was seen 5 days later for mammogram and biopsy.
how you have been treated is staggering

Spoke with the oncologist today. Seems I’ve had a really awful time on Zolondronic acid, I’ve agreed I’ll do the second, but if it’s the same dreadful side effects I’ll probably give up on it.

she’s asked me to start the letrozole tablets today as I’d held back due to feeling so awful. Not looking forward to a second surgical menopause, did the first one back in 2009 when I had a hysterectomy for endometrial cancer.

Anyone been taking Letrozole? How are you finding it?

I had ten yers of tamoxifen and 18 months of letrozole in total and it was fine really tbh. I think I’ll probably be back on letrozole or similar soon. I’d try and go in with an open mind, do lots of walking if you can , it might be that you don’t get too many symptoms

I’ve been on letrozole and am currently on anastrazole. I’m creaky and do have joint / muscle pains. As the previous poster said, keep moving and it really helps. I now swim a few times a week and that helps. Another friend has been on letrozole for seven years and reports no side effects - I hope it’s the same for you.

has anyone decided to focus on calcium rich foods.

i’m not a fan of yoghurt, cheese, and dairy much, I don’t like the taste of fresh milk

I’ve been on calcium tablets this past month to do with the Zolondronic acid and can’t make up my mind whether to carry on taking them as I find them fairly easy or should I be trying to get my calcium through food?

I have awful aches and pains. I spoke to oncology yesterday and and they have stopped the ribocyclib for a week. I have a ct scan on Saturday. This might be what finally tips me over the edge into speaking to AXA. DH is crying a lot which I don’t like. I might get one of those garden pod things. DS could use it when I’m done. I don’t know , I’m all of a dither.

the farmer is here trying to round up the sheep but without a dog. It’s not working well 😂

I think I need to go full on on the pain killers like paracetamol or ibuprofen or do something more proactive. Not sure which. I’m so addled by brain fog and DS seems to hate me 😢

@Ventress sorry to hear you are struggling. I am supposed to be starting on the same drug in the next couple of weeks so I’m interested and concerned as well.

Hope you’re feeling better soon

@Ventress sorry you are having aches and pains with the drugs - hope they can resolve things for you. is it the letrozole?
Its all really hard and a strain on the whole family - for they see what we are going through and are unable to help.
sending you lots of good wishes, its all up and down and sometimes more down than up. I know what you mean about dither, best to do nothing until dither is over, sleep on it first.
virtual hugs

Hi Ventress,
I’ve been wondering how you are. Sorry that you’re having aches and pains and that DH is having a hard time.DS definitely doesn’t hate you. It’s just teenagers.
Sending a big gentle hug and holding your hand from afar xxx

@Ventress ps I don’t remember did you have taxol? Just thinking I had horrendous pains in the weeks after I came off it. Axa is the private health insurance ? Yeah why not ask them ? and yes to pain killers can the GP give you a prescription ?and hot water bottles too maybe xxx

I just got my appointment for my 1 year mammogram. My anxiety went through the roof and I cried. So much pent up trauma.

@PoptartPoptart I would feel the same to change the number of treatments your having like that, your just not prepared for it, I hope they decide the extra 3 aren’t needed xx

awake all night. My throat is weird. Like a cold but not. Sort of swollen and snotty but not snotty. Dr Google says it’s late effects of radiotherapy.
anyone else had this? Anything help make it better?
Sooooooo tired!

Thanks @Nonamelass😊 how are you? You are very kind. I’m in a bit of a state! The aches and pains are weird. I’m off for a ct scan this lunchtime then will see my oncologist next week. My brain is so foggy it’s horrible. I want things to be straightened out but that seems to be upsetting DH even more.

DS will be okay, thanks. He is just stressed because of his exams and I feel rather guilty about causing that. He has gone out to his tennis coaching this morning which is good and then there is 6 nations rugby this afternoon which he will enjoy. The French are winning comfortably! (He does like the French team!)

I have dropped the ribocyclib, and I’m taking the paracetamol and ibuprofen to see if that helps my knees/ankles. It’s odd because I didn’t have achey legs before so this has kicked in three months later which is frustrating. Yes, sorry AXA is the private heath insurance I have through work. I keep meaning to speak to them. DH is just worried that I’m spending all of my pension money 😂

you asked about the Letrozole and I think it’s the ribocyclib rather that the Letrozole which is causing the achey joints but I will ask when I see the oncologist next week and feed back. I am going to Durham next weekend, which I’m looking forward to as I’ve never been there before. I hope the weather isn’t too bad 😊

What are you up to? I do hope you are well and are getting over your operation 💐

I hope all of you are doing well . I’m sorry my brain fog is so bad.

Oh poptartpoptart I’m sorry they have decided to do three more chemo. Yes I had weekly taxol @Nonamelassbut I found that okay (weirdly). It’s been swapping to the hormone therapy that’s been the adjustment
my sister said it could take up to a year for the hormone therapy to take effect properly - I can certainly live without that!

Hopefully the oncologist will get to the bottom of it. There are other hormone therapies they can give you if it’s letrozole..sending hugs xxx