I need some chemo positive stories please

[biopsop]

I’ve been diagnosed with triple negative breast cancer, I don’t know my staging yet, MRI to be done. I’m 38, I’m devastated. Chemo terrifies me, I just have this vision of vomiting for 6 months and being a frail and ugly woman at the end of it. I know I should be pleased it’s treatable, of course I am, but right now I’m terrified. I know everyone reacts differently, I just really need some positive stories while I’m in the wait to start (I will have chemo first).

I’m so sorry you’re facing this, however I can give you my experience.
I was diagnosed in 2018 with breast cancer luckily only stage one, but had 6 sessions of chemo. 3 sessions each of two different types. Then I had a single mastectomy without reconstruction.
Please make sure you are offered a picc line for the chemo as it really looks after your veins and is really good for then having your bloods and such taken.
I decided to reduce my calories around chemo, there’s quite a few studies that show you seem to tolerate it better, but that will be up to you. I tried to eat as healthy as I could be also if I fancied something had it. Take all the anti sickness meds your offered, however what no one mentions is that these can cause constipation (which again can be treat). Drink loads.
So, whilst having chemo I was a bit tired, but to be fair I was still trying to continue as usual with the kids, work etc! I was only actually sick once, and I think that was because I gave myself food poisoning!
Also if you have to have injections to raise your blood cell counts, I remember there were two different types, of varying cost and the more expensive one definitely had less side effects. But to be honest they were just flu like.
What I felt really helped was any exercise, I walked loads. I also had a new outfit for each chemo!
I’m eight years out and that stage of my life now feels as if it was a dream!
Please also use your breast cancer nurse if there’s anything you’re unsure of and take and make life as easy as it can be for you all, let people take the kids, cook food, ask for appointments at times that work for you if you can.
Wishing you all the best with your treatment.

In 2000 I had Triple Negative Breast Cancer and had six chemo treatments, three weeks apart. No side effects apart from feeling tired towards the end. I had radiotherapy too, 20 treatments over a month. No side effects whatsoever. I didn’t have the more usual/common Doxorubicin (as my chemo) because I had had it for a totally different cancer twenty-one years earlier. It depends on which chemo is used as to the side effects as I am sure you know.

I'm really sorry to hear your news. My husband had chemotherapy ( not for breast cancer). He didn't lose any hair at all. He felt nauseous but the anti sickness medication worked really well and he had hardly any vomiting. The worst side effect was fatigue - he was absolutely exhausted from the chemo so accept any help you need and are offered. I wish you all the best with your treatment x

I am on week 2 of chemo for triple negative breast cancer (weekly for 12 weeks and then possible another 4 sessions of a different type of chemo). Honestly, so far, it's not that bad at all. I have been warned that the first two are not too bad and it's gets worse but I am taking each week as it comes. The second type of chemo is apparently worse but again, I will deal with that when if/when it happens.

I've spoken to loads of people and they all say the same (and that includes people who are in the middle of the worse chemo). There are some good days, some worse days but most of the time you are fully functioning. They are very good at managing side effects.

I know it's terrifying though. But the stage you are at is the worst stage. My full diagnosis took about 6 week and I had 3 biopsies, 2 MRIs, at least 4 ultrasounds (lost count!), and a pet-ct scan and each time, I was bracing myself for bad news.

But now I've started treatment, I feel that the worst bit is over and mentally I am in a much better place. Honestly, the anticipation was worse that the reality for me.

Feel free to message me - I found it really useful to talk to someone who had been through the exact same thing as me and each type of breast cancer had different treatments so it's always good to speak to people who have the same type as you.

Thank you everyone, I’m spiralling a bit, just had to stop myself messaging my hairdresser asking to come in to get my hair dyed brown (as I currently bleach) 🤣 priorities.

@idrilim pleased it’s ok at the moment, my googling so far has said similar about the second lot. Once a week seems very frequent, is that usual for TNBC? I’ve been told MRI next week and oncologist in 2-3 weeks, so I’m assuming I won’t know my plan until the oncologist, and just got to pray MRI doesn’t show up anything else I guess??

@biopsop yes that is usual for TNBC but don't worry the weekly chemo is lower dose than the chemo you get less often.

Do you know how big your lump is? I feel for you - it is really scary but the sooner you get all the information, the better. But also don't worry about the diagnosis taking time. My oncologist (in fact both of them as I switched teams) said that cancer doesn't grow super quickly like people think it does (mine is grade 3 so it's aggressive too) and even if microscopic cells do migrate else where during this time (that wouldn't be picked up on any scans), the chemo you have is designed precisely to get rid of those cells.

I'm so sorry and you are so young for it.

I had breast cancer at 48 and had chemo and was absolutely terrified. My oncologist thought I would not go ahead I was so terrified but I had 2 kids, one with SN and so felt I needed to. I was terrified of being sick and told this to my oncologist who then gave me a choice of chemos (like choosing your favourite poison) and I went with weekly Paxitaxol. Its worth saying to your oncologist though whatever the chemo they give you industrial quantities of anti sickness meds so you often have the opposite issue but with time you can work out what works for you - I had ondansetron and they gave me 6 a week and perfect was 2 or 3 for me. I was not sick at all and only occasionally mildly nauseous.

It did make me frailer but I quickly recovered afterwards - during my radio I was already swimming a mile a time before I discovered you weren't supposed to swim in it, oops though was fine. It was kind of like a mild flu sort of frail. Appearance - I did by the end of it feel like I had been run over by a bus with hair gone and one breast gone and bruises but it was 2022 and now I look the same as pre chemo, long hair back, normal BMI, do about 8 hours exercise a week, breast reconstructed (3 year wait as didn't do immediate). I found chemo very difficult but it was mainly psychologically difficult and the steroids sent me loopy and ragey when I am normally really gentle. But its needed to kill the cancer / reduce reoccurrence chances and its not forever.

My life is now a new normal and great - I've done lots of holidays around the world, worked abroad, got my appearance back, got a lovely Maine Coon cat, daughter is now at university and I got quite a few lovely people through it. Just take it one day at a time and you will get there. Take your temp twice a day and any issues immediately call chemo line even if 2am then you will be fine.

@idril it’s 13mm which seems small to me, I swear the lump feels bigger! My lymph nodes looked clear on the ultrasound.

@OneZanyCat thank you (and to everyone who has posted sorry I’m not individually responding) literally found out today and had completely convinced myself it wasn’t cancer so brain is going into over drive.

I'm in the middle of it. It's not fun, but not as bad as you imagine. I'm triple positive so having 6 sessions every three weeks. Session three is next week.

per PP take ALL the anti sickness meds they give you - i've felt a bit sicky a few times but nothing serious. Get some decent laxatives in, as my digestion grinds to a halt with all the drugs.

The injection i give myself the day after chemo to raise white blood cells causes bone pain which is unpleasant. Days 3-8 you feel like you've got the flu, then it all gets better.

i shaved my head yesterday as i was sick of inhaling hair all night from my pillow, and all the hoovering LOL. and it looked dreadful anyway.

good luck - it's all a lot better when treatment starts, as you feel more in control of it.

I didn't have the injections - that was another thing I was afraid of having done IVF and the chemo I got didn't need them so if injections or anything else bothers you its worth asking to see if there's a way round it.

In the end I persuaded myself to do it by saying I would try the first chemo and see how it was, that seemed less scary than the whole course. Its worth keeping a symptom diary once you are in it as the cycles tend to repeat and you will learn what days in a cycle feel good / bad / meh. The weekly one its meh every day, the 3 weekly I think its a week of bad, a week of meh and a good week my oncologist said but not sure on the order. I went for weekly and meh but that does mean extra steroids.

Also when they give you the results of the MRI they often show other things which don't matter but they can read them out like you have 7 issues showing up and then you panic. I had about 8 things show, one needed further checks but all were OK.

I had chemo age 41, a few years ago. I still worked in between sessions. I had a few days where I felt rough but no sickness or anything. Then I'd work for 2.5 weeks until my next session.

I also found it useful to have a chemo buddy - I had two - people doing chemo at a similar time who you can message who get it - found them online. Though best to have similar personalities so if you are anxious someone else like that whereas someone very positive is best with someone else positive. Its just like you message each other to say this week has been meh but its nice to have the company.

My mum has been through chemo 2x, once aged 77 and again aged 80. She tolerated both incredibly well. Echo the advice to be diligent about taking the anti sickness meds, even if you don’t feel you need them, my mum only had mild nausea. (MIL OTOH didn’t take them as prescribed and struggled with nausea and vomiting 😐)

also echo the advice to call the chemo line if you’re not sure about anything

Mine is 12mm and I also thought mine felt bigger! My lymph nodes looked suspcious on ultrasound but on biopsy were clear. That is very good news that yours look clear but remember that even if lymph nodes are not clear, with breast cancer that is still stage one and with TNBC is just means you'll have immunotheraphy also (given at the same time as chemotherapy I think).

Oh and also sorry, meant to add that I was told that the chances of spread beyond the breast in a lump of our kind of size is rare. At the time that didn't really help me as I was convinced I would be the exception but it is worth reminding yourself when you start to spiral.

@idrilthank you, sounds like we might be similar. When did you get your staging? Will MRI check my lymph nodes? I know they will take a lymph node when I eventually get surgery.

@biopsop MRI will check your lymph nodes plus the general chest area to check for local spread (which would still be stage 1/2). If the MRI is clear they most likely will just proceed with chemo (if you are having chemo first as I am) and you may not need further scans. NICE guidance says that with a small tumour and no evidence of lymph node or local spread, full body scans are not needed and you will be stage 1. My case was a little bit more complicated as the chest MRI found a second "indeterminate" lump which needed biopsying but was in a tricky position and not very visible on ultrasound so getting it biopsied was very difficult (had to get the most senior radiologist involved). That turned out to be benign. I did end up having a PET-CT scan as part of the journey to find out what that lump was but I think most people don't have that. So I was officially staged after about 6 weeks but that was because of the complication of the 2nd lump. You will know more when you have your MRI.

I've had intensive chemo as an in patient over the last year for leukaemia. I had a PICC line which made the practicalities easier. I was sick a lot (despite anti sickness drugs) and was tired. I also lost my hair within three weeks. I knew it would happen and didn't care that much. The most difficult thing was spending weeks at a time in hospital and being homesick and bored.

A year on I still feel quite tired but it doesn't stop me doing stuff. I cycle, walk and swim and my hair is growing back. I've decided I like it very short and will probably keep it that way. It's been gruelling but I got through it by taking things a day at a time, being grateful for the amazing support I've had and looking for tiny joys in every day. I never take life for granted now.

@idril thank you I really appreciate it. How come it would still be stage 1/2 if there is spread? I know they are only MRI-ing my chest, I was surprised after another poster biopsied same time as me needed lots of scans, but different cancer of course, fingers crossed for the MRI then.

Different cancer but my DH managed to work and play golf the whole way through. He really was broadly ok. I do hope its not too bad. The worry will be worse than the reality I am sure.

My mum had 7 months of chemo for bowel cancer aged 58. She didnt lose her hair although she got a bit of peripheral neuritis (pins and needles in feet and hands). All clear since (she is 69).

@biopsop still stage one or two just because it is only classed as local spread rather than distant spread. For other cancers, I think that lymph node is classed as stage 2(?) but because breasts are so close to lymph nodes, I think that is why lymph node involvement is still stage 1 (but it's stage 1 N1 rather than stage 1 N0 with the N standing for lymph nodes). The treatment path is a bit different but outcomes are still good.

@idril thank you so much for answering my questions. I’m scared to Google and you’re being very reassuring! I have one more (apologies if this overlaps with what you’ve said before my brain is mushed) when can they say with confidence it hasn’t spread? Will they have a good idea at MRI or can they never truly know until surgery (I’ve been told I will be chemo first)

did you have genetic testing?