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 wasn’t allowed HRT after an endometrial cancer so I went through a couple of years of surgical menopause, I haven’t had any symptoms for quite a few years now so I’m a really concerned about what may come my way. I wasn’t up for the fact that it would restart a menopause!

Sometimes it’s really $>#% being a woman.

Feeling an absolute failure and very distraught. Tried doing first round of chemo yesterday and had a severe adverse reaction to the damned drug the first time. Staff responded rapidly and did all they should Dr called given diazepam to help before retry on half the rate. Same reaction five minutes in. Treatment stopped.
I exited a sobbing distressed shaking wreck who felt l had failed my first go. I had taken all the pre chemo drugs exactly as I had been told too and kind of then lost the plot.

l have now found the courage and called the oncologist secretary, told them exactly how those two adverse reactions felt from my side ( thought l was going to die as the sudden pain was that bad and l live with cluster headaches and this beat even them) and asked to see the oncologist to discuss how they plan to manage this going forward before I feel safe enough to have another go as the oncology nurse could not tell me just to come back in tomorrow and ‘try again on a lower dose.’

Just my sodding body throwing a spanner out over a drug on a fairly shitty journey so far. Suspect this might be one to make the grade of drugs my body has an allergy to so will also be asking if there are any drugs I could have to help with the severe anxiety mixed with grief from my family dying out during tShe height of covid as it’s making everything so much harder to cope with.

Anyone else been in the same boat with adverse reactions to an initial chemo drug and any helpful questions as to what kind of questions for the oncologist. Truly hoping the rest of you are having a better week.

@cancerycaramelbear sorry to hear that 😞 If you have any questions about chemo make sure you post them on here. Lots of us will be happy to help

@triballeader that all sounds very scary and traumatic, how horrible for you, I’m afraid I have no experience of this, but I just wanted to say that in no way are you a failure. Sending positive thoughts your way x

@triballeader

I'm not surprised you were distraught. Your body had an unexpected response but in no way is it a failure on your part.
Ive no advice really to offer you, its too early in my cancer journey to be dispensing more than buckets of sympathy.

I had a bad experience with an MRI on Monday. The nurse struggled to get the canula in, turns out it wasn't in properly, so they had to stop the scan. They had a total of 7 goes to get the needle in before starting the scan again. I nearly passed out when I was getting up when it had finished. My arms are covered in bruises.
I met the oncologist today and have asked for a port.

@PoptartPoptart thank you. I’m seeing an oncologist in a couple of weeks to discuss. Feeling gutted and broken at the moment but I will crack on.

@triballeader I’m so sorry to read you are having such a tough time of it. A lot sounds very much like a trauma response. I’m struggling to remember all the stories but hope they can offer you psychological support as well as practical help.

I’ve cancelled some plans for the weekend, don’t feel up to dinner party chit chat. Got a new food processor so going to play with that this morning.

Sending strength to all x

@triballeader I am so sorry you had a bad reaction to your chemo, I had a bad reaction to my second dose of chemo so I know how scary that can be, but you are right they do react quickly so thats a good thing.
What happened to me was the first dose of docetaxel was given at 100% and I was really really ill, I thought I was going to die ill and had to go to a and e etc. I got an appointment with the oncologist before the next dose which was reduced to 80% and on giving the dose had a bad reaction, went very hot, face was bright red and suddenly surrounded by doctors.
My dose had to be given in stages and gradually increased and that has been happening every cycle.
Its not your fault, I was told there are often reactions to docetaxel on second dose and the nurse had prepared the anti dote in anticipation! - didnt tell me that of course until after the event.

It means they will have to think about a different drug for you and they will proceed with caution, so they will probably stage the dose, I have a little, then a little more and then the final amount. It is very scary but I think it happens more often than we know about.

They will have a plan b, so dont worry too much, cant think of any questions but I do know that once it has happened they will be extra careful with you which is a good thing. They can reduce doses, as they have with me and I can say that 80% dose has been much easier to cope with despite the fact that its still pretty grim. I write down each day what happens in a book and then on the next cycle I know what to expect, it was recommended by someone on here I think and its been very helpful.
You are not a failure - the drugs are toxic -
sending hugs its awful I know but they will sort it out for you.

Thank you so very much, it was the same bastard drug that got me. First five minutes on the normal dose and did the stuff they are meant to left Ìt for nearly an hour then l reacted then second time on half the dose and still within five minutes of use. Absolute wreck since.
Oncologist has made an appointment to see me on Monday at 9am before trying chemo again later the same day.

@triballeader well thats a quick appointment so I hope they sort some options out for you. I am having chemo on Monday too so will think of you and hope all goes well for both of us.

Hi - can I join this lovely supportive threat please? Just been diagnosed stage 2 lobular carcinoma in my left breast. Booked to have a masetecomy and construction later this month. Good news is that it seems like my lymph nodes are clear and my CAT scan didn't show up any other cancers. It almost felt like a relief when I heard about the type I had as I had totally catastrophised when I went for the biopsy and was told cancer was probable but not definitive until the results were in - I was planning my funeral by the afternoon. The tumour is hormone receptive so I have had to come off HRT and the night sweats have come back with a vengence.

Has anyone found a different regime that lessened the menopause symptoms - I was a basket case before I started HRT - not keen on going back to that if there is anything else I could try.

I also any advice on what to take in my hospital bag?

How did you feel post surgery - I am feeling eerily calm about it all but it has been suggested that sometimes post surgery can be a difficult adjustment period? I am wondering if I am in some sort of denial.

Sorry everyone is going through this journey. Wishing everyone lots of luck.🌷

@Ted27 your mri scan sounds bloody dreadful - are you going to complain? its bad enough going for these appointments let alone to be terrorised when you attend.

@cantbelieveIamhere

whilst it was from pleasant I think 'terrorised' is going a bit far. They didn't do it deliberately and they weren't the first to struggle to get a needle in.
I will be having a port so hopefully it won't be an issue in future

@BermudaBluessorry that you have to be here but welcome from me. I also went cold turkey on HRT and have been mostly ok but sleep is poor and getting too hot seems to be part of it. My only solutions are to modify things I can control. Earplugs for DH snoring and charging my phone at the other side of the room so I can’t look at it. I have also used a duvet each so I can throw off mine!

I had a different surgery (reduction) but felt relieved and a bit euphoric afterwards. I was also very calm beforehand. It was what I wanted and I had had many messages of support. I was only in for a day op so can’t help on hospital bag. I did get a letter with a list of what to bring.

Hi Bermuda
Îve had lobular grade 2 ( wasn’t told stage but it was only in breast and was 28mm)That was 24 years ago.. I was 35 so I had alot of preventative chemo , radiotherapy ( I had a lumpectomy) chemical menopause and tamoxifen for five years. I can’t really help you on HRT cos I’ve never had it obviously ! I did have lots of hot and cold moments and hot flushes but everything was mixed up really so it’s hard to say what was because of what if you like. Anyway this lobular cancer had just reoccurred… another lump in same breast so have had a double mastectomy and am waiting to find out what comes next treatment wise !! I was in for two nights.. Îd recommend a nightie or pjs that open at the front , a LONG charging lead for your phone and earphones. Good luck xx

Oncologist made the decision that I am not having chemo this week based on the state she saw me in. She explained that chemo is being used to give the very best possible outcome but that it is the surgery that will make the biggest difference long term. SHe will review the drugs used. And look at possible alternatives and a far gentler regime and call me later. She was also very unimpressed that the CMHT have left me to Ìt (multiple trauma bereavements at the hight of covid so I now only have one family member still living at the end of Ìt all that is making every trip to the hospital a flashback nightmare from hell) and promised they will be hearing from her and she will get me the support I clearly need. I think I may finally have a doctor who looks at the whole person and not just breast cancers. I still think my future surgeon has the bedside manner of Attila the Hun. Dd ( knows the surgical teams due to working as a burns and plastics nurse) rates him as technically very good but not one the nurses like to see on the loose with anxious patients. They prefer to ride shotgun as they are the ones left picking bits of people up after his chats….wondering if it might be possible to be under one of the ones my Dd rates as caring as well as technically good. Her opinion is that surgeons over 50 did not get patient care taught in their medical syllabuses at all. I now think she has a point.

And just to add l truly hope your chemo went as well as it can and you had some lovely caring nurses etc looking after you.

I am off to seethe at just how abusive my thankfully now dead brother ( drug user and awful alcoholic) been after some of the things my cousin and now over 20 kids have told me even though l did everything l could to protect them all from his reach. after that cancer can go and do one. Thank you so much for your support. It means a lot.

So sorry you find yourself in the same club no one ever wants to join.
i have not the headspace to respond as l wish l could after last weeks adverse reactions to initial chemo BUT the ladies here are gently supportive, encouraging and tbh it’s one of the nicer threads on Mumsnet

if you need to take breaks from following that’s absolutely okay, if you want to ask tips on what others have found helpful as you take one step in front of another that’s absolutely okay too.

wishing you all the best and a good recovery as you prep for surgery.

@Ted27 sorry terrorised is how i feel by many attempts at needles as i get more and more anxious as it doesnt work. didnt mean to offend

@triballeader glad you didnt get rushed into decisions today and that you have a nice oncologist. I am glad if my post helped, sadly my day didnt go that well and four attempts at cannula before it worked ( although its a long day - there at 9.15 and home at 4.30) - however its all done and I will be wired for two days and then out for the count for at least 14.
There was a reaction for someone else on the unit today so I guess it happens more than we know about. A gentler regime sounds good.
I havent got surgery as mine wont be solved by that so have no advice in that department. Lots of others on here do though.
Its all very scary and hard to cope with and we all have to do it our own way. Its good to be able to get some advice here as everyone has their own experiences. Good luck with the plans for your treatment.

Hi all, had my final chemo yesterday can’t quite believe that I’ve got to this point, I even rang the bell which I wasn’t going too but the nurses persuaded me too!

I’ve still got radiotherapy for two weeks in April but with the lumpectomy in September and now chemo done hopefully the hardest bits are over.

I have cried a lot today which I wasn’t expecting feel a bit of an emotional wreck now it’s all coming to an end, it’s definitely been journey. For those of you at the beginning of this keep going you will get there in the end, we are all a lot stronger than we think we are 😊

How are you all doing with fatigue. I'm barely functioning at the moment.

@MrTiddlesTheCatsorry your struggling, I’m not great my legs constantly feel like I’ve done a full workout, walking up stairs in particular is hard work, and I’m tired most of the time never feel I get enough sleep

Wow, @Lovewine1975 I can’t believe you’ve officially finished chemo. That’s quite a milestone. I remember when we first made contact on here back in September. It’s been quite a journey so far.

I think what you’re feeling is completely normal - I know several ladies who have reacted like you.

I’ve also heard a lot of ladies say that it isn’t until all the treatment is completely over that they start processing everything. During active treatment we are just in survival mode, and it’s only once it’s all over that we can begin to feel and try to make sense of it all.

Best of luck with the radiotherapy. Keep us updated and let us know how you get on. Any top tips also welcome!

The fatigue is awful isn’t it. It doesn’t matter how much sleep I get or how many naps I take, I’m still always tired.

For me, it’s like a cross between jet lag and a really bad hangover - with a very late night thrown in for good measure!

I’m just trying to go with it to be honest and not put any pressure on myself.

The hardest part is feeling so out of sync with my family. I sleep when they are awake and vice versa sometimes.

I hope once chemo is over that our bodies recover quickly and get back to some resemblance of normal.

@PoptartPoptartnot long for you either, when do you start radiotherapy?

In was thinking about that as well earlier both of us starting around the same time, worried about what it was going to be like, feels like a lifetime ago now. I definitely look very different hardly any hair left, eyelashes and eyebrows on the way out and put on about a stone!

I’m going to see if I can get counselling think I could do with it as honestly it’s a pretty traumatic thing we are all going through.

I’ve got my first radiotherapy appointment on 17th March a planning appointment so will definitely give an update on that! xx

Suffering with dreadful fatigue and very lightheaded myself with after effects from zolondronic followed by five radiotherapy, a walk in the park after 25 rad and chemo in 2009 but still totally draining. A bottle of lucozade helps but strangely I feel a lot better after eating a banana.

I decided today to look into cancer counselling and am waiting to hear if I’m eligible as normally they like to do it before the radiotherapy here but I said it was more about my having a third cancer, I wasn’t fearful of radiotherapy, fortunately chemo isn’t needed this time.

I’ve got oncologist appointment on Thursday and I’m wondering what she will say as everyone’s been shocked at how the zolondronic wiped me off my feet.

still haven’t started my letrozole as can’t bear the side effects of another surgical menopause ontop of how I’m currently feeling.

I hope you all feel better soon 💐💐💐

I didn't have chemo but still have the utter exhaustion. I can live with it when I'm home. My husband tries his best to pick up the slack. But some days I can't make it in to my part time school and then I feel awful as I've already missed so much.