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💗

For those of you commencing chemo, the best advice I was given was exercise. I have talked about this previously on the thread. It does something to your liver that helps process the chemo or something along those lines. So I walked the (just under) six mile round trip for each treatment. I also signed up to a CRUK walking challenge fundraiser. It was lockdown and the weather was great so that helped. I can say I didn’t have a single side effect from the Paclitaxel. Steroids made me hungry and messed with my sleep but that was all. It was the best thing I did. I was already fit but wouldn’t normally have done that distance regularly. That is my experience but if it helps even one of you, then that’s good!

@TheFormidableMrsC I’ve joined a local gym with a pool so I can do 2 gentle swims a week once port fully healed. I’ve also read studies about the benefits of exercise and the benefits to treatment outcomes and preventing recurrence too. I take a Loratadine a day and have no bone pain from the Filgrastim and then also learned about Loratadine helping with BC! So a nice bonus.

I’m on Pax/Carbo weekly (plus immuno at the start of each cycle) and have no side effects either, I’m 4 weeks in. I feel a bit tired on weekends once the steroids run out. Love those roids.

Did you have EC? I’ve been told by the nurses to basically enjoy my side effect free PC experience as the EC could have much bigger impact. Just wondering how you faired on EC compared to PC if you had both :). I did see one lady recently on a UK BC group say that she suffered terribly on PC but felt fine on EC but that’s outside of the norm from what I’ve read 😭. I kinda wish I was having the Red Devil first to get it over and done with but there must be a method to their madness.

No I didn’t have EC. I was a bit unusual in that I had a tumour that appeared within a few months of a clear mammo after I was prescribed a double dose of progesterone daily for peri bleeding. My tumour was 3 cm but completely contained and no lymph involvement. It was HER2+ so I had immediate surgery, 5 days of radio and then chemo plus Herceptin. I didn’t actually “need” chemo but my onc was very much for the belts and braces approach and your first dose of Herceptin requires chemo. Used cooling cap, had minimal hair loss which was fortunate. Exercise is very beneficial except I had IDC which is a type that is neither impacted by exercise or alcohol. So the fact I was very fit made no impact on my diagnosis, nor the fact I like wine a bit too much! However, exercise certainly helped me get through chemo with no issues and I continue on because it makes me feel well. I’m five years clear post treatment now and hope that that situation remains (forever). I take one Loratidine a day and 1 x 75 mg aspirin as both have been shown to reduce risk of recurrence. This has also been discussed further down the thread if you want your scroll back! Anything that you do, that makes you feel well, is positive IMO.

@TheFormidableMrsCthats great about exercise, I go the gym 2-3 times a week so want to try and do something whilst I have chemo. Are you allowed to go to the gym, or is that a no no due to the risk of infection?

I think I’d ask your BCN. My cancer was during lockdown so all my exercise was either at home or outside so I can’t advise. I think you’d be fine unless neutropenic. Pre pandemic there were several women at my gym undergoing cancer treatment so it was clearly fine for them.

@cannaecookrisotto I’m having 8 cycles - 4 EC followed by 4 Paclitaxel. Every 2 weeks.
My oncologist said she prefers to give it every 2 weeks but if I’m not recovering quickly enough or my white cells are too low then it will change to 3 weeks.

@PoptartPoptart they’ve done me the other way round, 4 cycles of PC then 4 EC.

my PC is weekly then EC every 3 weeks but I’m defo going to ask the question because like you say, if my levels are too low or I’m feeling too much like shite we can always push back to 3 weeks. It could be a whole month early of finishing chemotherapy which would be a dreaamm. Will you be having Pax weekly?

@PoptartPoptart and @Lovewine1975 I got some great advice over on the general cancer thread too just before I started my treatment - avoid your favourite foods and snacks during chemo so you don’t associate them with the awful taste in your mouth and go off them forever! No more chicken wings for me until it’s over! I do have a weird metallic taste in my mouth but the Difflam mouthwash helps. No soreness or slimy yet but it tastes funky for sure.

I think having Paclitaxel first is easier (and I don't know the reasoning behind the order they are given). I was straight in with the big guns, with the dose dense EC! Totally lost my appetite, lost loads of weight, and felt dreadful.

So went into the paclitaxel phase already weak and feeling rough, and I continued losing weight throughout chemo. I also had 12 rounds of paclitaxel, the oncologist told me that the effects of chemo are cumulative, so he was expecting me to feel rough! No way was I exercising. My treatment was in central London, and it's a mile walk to the station from my house. That's tough to do when you're so weak from lack of calories 😂

@cannaecookrisotto
No, I’ll be having Pax every two weeks after EC.
Are you waiting for surgery after chemo? I wonder if that makes a difference?
I had my lumpectomy already and now the chemo is ‘precautionary’ as I was triple negative.
I’m also waiting for the genetics test results, but I’m really trying not to think about that too much.

That’s a good tip about avoiding favourite foods. It makes sense.
I’m also going to get some Difflam mouthwash to have on standby just in case.

@BatshitCrazyWoman
The BC nurse also told me that the effects of chemo are culmative. She said that most side effects can be managed, but the fatigue and weakness can gradually get worse, particularly if you’re losing weight. Walking a mile from the station sounds tough.

Waving at comrade @BatshitCrazyWoman

i had 12x weekly paclitaxel first, followed by 4x fortnightly EC. I’d been sick a couple of times on the pacli and very sick on the last round 🙄. I let my onco know and they played with my EC dose, giving me very good anti sickness for the ec. I kept to the timetable for the anti sickness drugs and wasn’t sick through ec. I did have a few days each ec cycle where I was very tired but made sure I got out for a short walk even on those days (which for me was 200 yards using both my walking poles). Apart from the grotty few days, I was out and about walking in the fresh air and pottering about at home. It was doable and I was well supported by my family.

(aka Dancingwhilstfacingthemusic)

@PoptartPoptartsame as you triple negative waiting for the results of a genetics testing, having preventative chemo. I’ve no history of breast cancer in my family, but my gran and mum both had cancer so don’t know if that will make any difference.

I’m much further down the line than most of you ladies posting on here. I had a lumpectomy, radiation and now on Letrozole. Surgery was in 202/. Just had my 3rd yearly mammogram yesterday and all the feelings of terror are back. So scared they will find another tumour. But then I remind myself I got through it once so I can do it again if necessary. Told results will take 2 weeks. Last year it took 18 weeks for me to actually have the results sent. I phoned after 2 but didn’t actually manage to hear all was ok until around 3 weeks. Wonder if the fear ever goes away.

@PoptartPoptart and @Lovewine1975 I’m triple negative too :). Chemo first then surgery as my twat lump was 9cm 😱. Done 4 weekly PC and have the immunotherapy on week 1 of each cycle. I’ve been lucky so far with the side effects but they’ve told me it can be cumulative too. And that EC can hit harder than PC so I’m just making the most of feeling ok now whilst fearing the worst but hoping for the best.

Im still waiting for genetic results to come back too. No history of it in my family either. I’ve been waiting about 6 weeks now so hopefully come back soon!

I saw surgeon on Weds this week and he was so reassuring. Has anyone else had this experience? My oncologist scares the shit out of me but the surgeon is just all “if you get a PCR then that will make my job easier but I’m going to get rid of anything that’s left, we’ve got this woman”. They’ve said I’ll be looking at a mastectomy due to the size of the original tumour so I’ve asked for a DMX. The asymmetry will annoy me plus scary Oncologist said that there’s evidence to show younger women (I’m 34) are more likely to have reoccurrence in other breast. Surgeon though said he didn’t see any additional risk in just a single mastectomy, so who bloody knows 🤷🏼‍♀️. But I’m going double because I’ll hate myself if it did decide to move back in on the right boob. I won’t be able to have immediate reconstruction I don’t think as having radio after surgery, then standalone immuno. But tbh I think I’ll be sick of being faffed with at the end of all this and will take a break, think about reconstruction later on when my bodies had some time to recover from the next 12 months.

@Bitezbabe I think that scanxiety will be with us forevermore. I will never be able to unhear the words “you have cancer”, and that’s enough to have completely wiped away any sense of security I had in my body and that comfort blanket of “that won’t happen to me” I was living under. I think over time it will get easier for me, but I think I’m going to need some serious therapy when I’ve jumped off the treatment treadmill to make sense of WTF am I supposed to do now. But even with all the therapy in the world, I will be juicing up on benzodiazepines and chewing my finger nails off in the run up to any scan results!

How do they decide if its chemo first or surgery first?

@cannaecookrisotto I think you are brave going for both breasts being removed. I am too old to worry about lop sidedness. I havent met the oncologist yet but the surgeon has been very optimistic and very kind so far.
I now have appt for two scans, one sunday and bone scan on thursday.
I am terrrifed as each step leads you nearer to whats actually going to happen but on the other hand I feel quite ill and tired and sick of thinking about this shit every day.

@Ventress a holiday in Italy sounds like a lovely idea to look forward to.

Do you have to buy your own cold socks and hats for chemo?

Thank you everyone who keeps posting stuff, especially tips for dealing with it all as at the moment I dont seem to be dealing with any of it very well at all and feel pretty grim and depressed, The nurse says I must cry to get it out but I cant spend my days crying it just gives you headaches and snot everywhere.

Congratulations on your last Herceptin dose @BatshitCrazyWoman 🎉

@cantbelieveIamhere There is no 'must' when it comes to how you feel and how you deal with things. Everyone is different and has to do what suits them.

In some ways I had it 'easy' as I went through things in a bit of a daze because of the burnout. I also tend to be a very private person, so things that might help others would not help me, and vice versa. You will work out what works for you as you go along.

Hi all, it's been a while. My brain is completely fried with all the health issues I've got going on. Right now my breast has started really hurting and is swollen again. DH thinks it's a reaction to the radiation. I thought I was past that, but apparently it can kick off again months or even years later.

@cantbelieveIamhere I think it depends on type, size, whether it’s hormone receptive etc. For TNBC, I think if it’s smaller than a certain size then they’d opt for surgery first. But because TNBC tends to be a higher grade (usually grade 3) and quite aggressive they want to mop up any cells that might have started to stray away. My Oncologist said at the first appointment with her when she outlined my treatment plan “There’s not another oncologist in the country that would look at your case and recommend anything different” (because I asked why not surgery first as my immediate reaction was to want this removed). Which made me feel better in a weird way, I like a good protocol :).

I’m on the Keynote 522 regime for TNBC which has added a new immunotherapy drug to the usual chemo regimen of PC-EC. It’s fairly new and has revolutionised outcomes for us TNBCers (thank the lawwwdd).

@MrTiddlesTheCat sorry to hear you’re having some health issues and your poor boob is hurting again. I’ve read radio can play havoc too, are you going to get it looked at?

Welcome back @MrTiddlesTheCat - sorry things have been tough. You are among friends - feel free to vent as needed.

Hope your gynae issues have settled down and you got some answers from the tests that were being done?

Sorry that your breast has got swollen and painful again. Might be work a call to the breast care nurse?

@TheFormidableMrsC hope everything settled down after your allergic reaction

@MrTiddlesTheCatI’ve thought of you recently as I have had a 4 week bleed after five years and I’m having a hysteroscopy next week. I hope your gynae issues were not as bad as you feared.

I had terrible trouble for several years after radio with swelling and pain. I am told that it can sometimes resurrect even after 15 years. It seems to have settled now and the hardness and scar tissue has softened but I hear you. Speak to your BCN and ask them to check you out if you are worrying. I think it’s pretty normal though, radio is brutal.

Thank you. I’m not sure what was physiological or connected. I think I mentioned my Dad died suddenly and brutally and I had a lot of physical symptoms. I have changed my tamoxofen and it’s been fine. I had a week of steroids for the hideous reaction on my face and a hysteroscopy next week for the sudden period that lasted 4 weeks. I’m hoping it was all stress/grief related

Hey all

@MrTiddlesTheCatI’ve had pain and swelling post radio and am soon to be a year post treatment. I have been referred to have lymphatic drainage and this has helped. Radiotherapy had a long tail of side effects which can be very annoying.

@TheFormidableMrsCI’ve got my hysteroscopy on Monday 😬