Thanks everyone xx
Helen - yes that’s it exactly- fear of recurrence is going to be an ongoing battle - and I guess that’s worse than fear of chemo for me right now x
Vaneysha - Mine is 5% at 10, but goes to 9% at 15. There is no ‘2O years’ on predict - but I could see that be side of my age, it’s the long term for me.
Before diagnosis I always read that BC has great survival rates - then you realise that that is quoting 5 years. I have come across so many stories in the media since the summer - as I guess some of you guys have too. Olivia Newton John had me in tears, and I’d just clicked on a story about her selling her Grease stuff off!
I went round to a work colleague’s for tea this afternoon and it was good to talk through my decision again. I know I’ve done the right thing for me - I guess having a choice feelings like I’ve ‘chosen’ to put myself through this ordeal possibly unnecessarily. Which isn’t really the case. I’ve been ok since last Monday when I gave the go ahead - it was the letter that triggered another panic in me.
Thanks again xx
I am only three days post my first FEC. So it is still early days, and I would hate to suggest it will be better than expected for everyone.
I think part of the problem with chemo is how everyone else reacts before you have it.....that it is such a terrible thing, which is what really ramped up my fear beforehand. It is a bit like listening to childbirth stories!
We all have to weigh up fear of recurrence vs fear of chemo, and I think that is a very personal journey. For me recurrence is worse...So I am cracking on with the chemo!
All the best XXX
i absolutely sympathise with you. I have just returned home after being at the hospital all day. I am having a mastectomy and node clearance on Monday. I too have had a total meltdown with my mental health. I am also HER +. I’m older than you and have multiple health issues alongside anxiety and panic attacks. I have chosen no chemo as the effects and long standing problems that it could cause for me are just not worth it. If I was healthy and younger then yes I would but each of us has to weigh up what feels right. Go with your instinct and I am sure you have researched all the side effects and then weigh up if you can get through. For me it’s about quality of life but that’s just my case. My heart goes out to you as I have battled with this over 10 days and at one stage thought I was loosing my mind. Not slept or ate and at one stage even rang the Samaritans as I live alone and needed someone to talk to.
Sending love and hugs 🤗
if you don't mind me asking at what stage are you in your chemo.
How has has it been going?
I've just faced the same dilemma today. I have had the port put in today and after a pre surgery nervous meltdown it went from my chest which was the original plan, to in my arm instead, which I think was the right call.
I then had a pre chemo chat where I basically broke down into pieces and I now have until Wednesday to decide if I should go ahead or not with it. Every single tiny piece of me is saying it's the wrong thing to do. But I'm so scared of it coming back. It could come back even if I got chemo. But if I did get chemo then at least I can look my girls in the face and say I tried. There are other complications with me having chemo on the mental health side, so I'm currently in a post-surgery exhausted emotional state having just got home and really genuinely not knowing what I should do. Chemo doesn't increase my prognosis by much, but more than some other people's here - approx 11% at 15 years. I'm 33 and I have three tiny kids, and mine is also HER2+ so... I get why they recommend I have it but it means having to battle some other very long standing demons alongside the chemo itself which makes it all the more difficult. I'm genuinely at a loss at what to do. This is the hardest thing in the world and from the outside it seems so easy ("just get the chemo, it's only 5 months, hair grows back blah blah blah") but it really isn't as simple as that.
I really wish I had an answer. I've always said to go with your gut, but for the first time in my life, my gut is clueless.
It is such a difficult decision to make...if only we could know what side of the statistics we would fall on....
Even though my recurrence is high at greater than 30% with no chemo, it won't go down to 0% with it...so I will be feeling for lumps for the rest of my life...as I am sure many of us will.
As chemo hasn't been as bad as I expected so far...anything that takes away that long term risk is worth it for me. The chemo is mopping up all those stray cells that may have lingered in the 5/100 women you refer to.
Another option is that you have a go and see how you get on...you don't have to finish the treatment if it is too much....
Take care xxxx
I was diagnosed with lobula breast cancer, tumour was 7cm, 1 1/2 lymph nodes involved, but had surgery to remove prior to chemo as the tumour showed smaller on the MRI and I think if they knew what the size really was I probably would have had chemo 1st. If it's any help my husband and I did the predictor test on line which give you percentages of if you only had surgery, chemo, radiotherapy, hormone and also bone thining infusion. My chemo only came out at 4% so lower than yours, but after we discussed it we both decided to throw everything at it. I am due to start my chemo next Tuesday and can honestly say I am scared to death of it and the side effects, but I just keep thinking 18 weeks every 3 weeks is nothing if it's going to up the percentage. I know everyone has their own journey to go through and it's not nice at all, but it's just to say we just have to think how strong we women are and can get through this, well that's what I am hanging on to.
What type of Bc do you have? I am her + and having chemo before surgery. My monster is quite big, 6cm, but hasn't gone to lymph nodes. I was told that it would improve outcome by 8-9% if I had chemo and targeted treatment 1st. I decided to take that 8% as I'm only 50 and was told it would also reduce risk of reoccurring aswell. I was swayed by the fact that I have kids at home and would do anything for them.
Again this is mainly due to the aggressive nature of her+ and what type of bc you have. I didn't have 2nd opinion byt did lots of research that suggested chemo before surgery was the best option.
So depending on type, risk if reoccurring and size the decision is going to be different.
Not sure if that has helped you at all??
Is anyone else here having chemo post surgery that was ‘borderline’ re the benefit? I’ve had a really tough time the past couple of weeks making the decision to have it. I’ve had different opinions from three oncologists as to whether they think it’s worth it or not - ultimately it was my decision to go ahead as I felt at my youngish age 42, if it came back I didn’t think I could cope with feeling I hadn’t done all I could. I was content with the decision, but today I received a copy of the oncologist letter to my GP and it reads ‘5% benefit at 10 years...if we treat 100 women like her, 95 would get no benefit, but there will be 5 who will be alive 10 years from now that wouldn’t have been had they not had chemotherapy’. It’s just sent me in a tizz again - seeing it in black and white. I don’t want to be one of those 5 - but equally I am so scared of chemo - and it’s such a low % 😔
I know there isn’t a right answer here. Just wondering if anyone else had a borderline benefit and is still going ahead ? X
I had a total breakdown last Tuesday, I believe it helped me handle the chemo day better last Thursday.
Crying is a fantastic energy release... Definitely a recommended part of treatment... Just need to control the time and the place if possible!!!!
Love it ladies, at least you're smiling in yours ❤. I never take selfies so was trying the pouting look,ha ha
Love the idea of tattoos Helen!!
And yay for Day 12 Debknits, I too have side effect bingo card...think I have ticked all of them off so far, lol...
I cried for the 1st time today, think I have not been able to until now. What I really need to do is have a good sob but scared if I start I may not stop.
Beautiful.. My 17 year old daughter cut my hair.. So we had lots of variations.. Including a David Bowie 1970s one... But ended up like this..
Sorry about the cheesy smile!
i went with the pixie cut, couldn’t quite face a shaved head lol.
As with everything else it’s the not knowing that gets me.
Well chemo 1 day 12 done and I’ve ticked off quite a few side effects on my chemo bingo card lol
Fortunately none have lasted too severe and have all been manageable.
I missed a day and am overwhelmed with messages! I think we are all going through a deep trauma and we look for control where we can. It is at times petrifying and I was crying going to the chemo ward... Or Chemo Land as we call it. The reality was better than my fears. Lots of fellow cancer warriors!! My control has been a number 3 buzz cut like VivMc. I like it..but I know a lot of fab short haired women. My partner says I look like a young boy with boobs (we have been together since we were 16 so there is alot of banter). I have also become obsessed with researching tattoos to cover my nippleless mastectomied breast...just because I want some control back. Luckily I have years before I can ever get one so no snap decisions ie my children's faces 😂
Thanks for the tip! I deleted all my social media because I was getting really upset about seeing everyone and their (outwardly) happy lives, but that's a really good tip to know and I'll make sure I do that, thank you x
If you join the Paxman cooling Facebook group you will see lots of photos of ladies before and after treatment and many mid treatment- some of them appear to tie a scarf on top of the outer cap ( done up under the chin like the Queen) to maintain the pressure on the crown connection as that is when the cap connection is generally weakest and it is where most thinning happens
whatever happens keep capping as it protects follicles and helps with regrowth
Yep bought the paxman complete kit as well as baby hair detangling spray, detangling combs etc. Prepared to wash hair once a week, not going to use any heat on it, cool water when washing it etc. Literally obsessed over the proper way to care for it with scalp cooling because I'm a huge huge control freak and it's the absolute terror of the unknown and uncontrollable that's getting to me. Despite everything I do, it could still all fall out. I'm going to make sure that cap is as tight as possible on Wednesday! X
FEC is like EC but with an extra drug - it’s the E that affects the hair so it would be the same for both of us. I am not on paclitaxel so can’t comment on that but it’s the same family as Docetaxil so I guess has similarities. It is really hard - I don’t think the contact with my scalp was close enough for the first session as my hair loss was patchy - I lost more than 40% - nearer 80% eventually probably and it was soul destroying so worth making sure it’s as tight as you can tolerate.
The unit are excellent about it and make sure I have everything I need for the prolonged time I am in there as it does add to the time. Have you read on here about shampoo and leave in conditioner? Worth doing a search about how to care for your hair which is different to normal. There are loads of recommendations including combs etc.
What I would say is, don’t give up - even if you lose hair I was told it helps with regrowth which it seems to have done in my case! x
Thank you so much for your message. I'm not really very familiar with the different types of chemo so I'm trying to compare your treatment to mine but don't really understand it - although every situation with the scalp cooling is unique I know. Im happy to put up with the extra time and any discomfort it'll bring, what I'm worried about is giving myself hope for it to be destroyed. Is FEC the same as EC? I have that for 4 sessions then paclitaxel for 12 sessions. Would I know fairly early on if I'm likely to keep my hair? I can certainly afford to lose some, just not all of it... I've just tried my wig on to try and calm me down (that plus two diazepam as was on verge of panic attack) it looks "normal" but I just know how fragile my self esteem already is and I just feel like I'll be less of a person without my hair. Very pathetic to think of it that way I know but I'm just trying to prepare myself. Eyebrows and eyelashes I can handle, never had much in the way of eyelashes anyway and I've been a winged eyeliner wearer for years, and can draw eyebrows on... But hair is my whole thing. I can't believe yours started growing back - so if i lost loads of hair on scalp cooling would I just carry on using it anyway and it could help hair grow back even on chemo or am I misreading? Xx
Thank you, that's really positive. I have really thick hair and I'm worried the cap won't reach my scalp properly, I could easily afford to lose 40% of my hair but I know it's different for each person how much they lose. I only wash my hair once a week because it's so thick so thick so I can handle that. Really needed to hear experiences like yours, thank you x
I have read through your posts and can identify with so much of what you describe. I am from the August 2019 group who are fab and I cannot tell you how supportive I have found this forum. I really just wanted to respond about the cold cap. I am nearly twice your age but have always had thick hair which so far had not got any grey in it. Along with all the anger and fear that the diagnosis brought with it my main issue was losing my hair. I know it sounds odd but I totally get where you are coming from with it, even at my age.
I too, am fiercely independent and do not want many people to know about the diagnosis - I can't bear the pity which is an issue for me I know! I have some close friends who have supported me through this and my husband who has been amazing.
Anyway, the cold cap - give it a go. I have found it completely manageable. I did lose quite a lot of my hair after the first cycle and do need to wear a wig (more later) but - I have not finished chemo yet (I am on FEC-T) so have had three FEC and two docetaxel (one more to go) - it is growing back. I am hoping that the docetaxel doesn't make the new growth fall out but it is looking hopeful so fingers crossed. Try anything that might make you feel better.
The wig - I can't tell you how many people have said how nice my hair looks! I was a bit disappointed really as I always thought that my own looked better but apparently not. If I am being honest I don't think people are that observant - they see you with hair and thats it.
I hope all goes well for you - you have a lot on your plate at the moment and it must all seem so hard.
Cold capping isn't painful , uncomfortable or that cold after the first 10 mins ,take a panadol 30 mins before if you are concerned, it's perfectly doable but adds time and above all helps protect the follicles
I had 15 sessions of chemo and probably lost 40% but no bald spots ( it stopped shedding after the Fec and was regrowing during taxol)
I had more difficulty with going from being a daily washer to a once a weeker so had a hairpiece that I could wear for going out if my hair was a disgusting mess underneath
Read the Paxman site , join the Paxman group on facebook
twinklestar, just wanted to send you a hug.
crying is good I think - sometimes I feel like I’m coping but other times I want to sob my heart out, or scream, but somehow I can’t even cry - I’m just so scared of it all.
I feel for you re. the childcare. I’m lucky mine are a bit older at 12 (twins) and 16, but they still need driving places and much as my friends all want to help it is hard to keep asking.
Thank you xx
I have bought a wig, it's home, hidden in a cupboard for now. Cost a fortune, cried when they put it on me, in my head I was just thinking WIG WIG WIG. It looks OK but it's still a wig and I really, really don't want to need it. I'm scared of one of my kids yanking it in public and stuff. I'm scared of the frustrating amount of time it'll take for my hair to grow back and look normal. I'm scared of the first time I shower and the hair falls out. And my husband's reaction to his bald egg wife. And my older two children saying something or getting upset about it. It's just something I never expected to have to think about at 33 and I'm so, so angry about that.
Gosh Vaneysha- it sounds like you have a lot going on. Bless you xxx Maybe look into a few different style wigs - just in case? There seems to be some really natural looking ones out there. One day at a time xx
I asked for another oncologist but the breast nurse said she was even worse than the one I had. No empathy and terrible bedside manner. Talked to me like I was some sort of dimwit instead of a professional woman with 2 degrees. It feels like a one size fits all attitude with no concern about the individual and other health problems. I feel like running away, not doable I know but it consumes your day and night. Nightmare. X
That is awful particularly about your oncologist. I've been a total pain and emailed an essay of questions (was more like an anxiety vomit) not been answered yet but I will persist. You should too. I'm really sorry about your predicament. Conveyor belt sounds right. Having chemo increases my prognosis by a poxy 11% and I'm wondering if it's even worth it. But I have accepted I owe it to my girls and husband to try. And I'm either all in or all out. So as much as I despise every single second of what's to come (and it's a lot) I'm doing it, but not because I want to. I really really hope you can get your questions answered - can you ask for another oncologist?
yes I have seen the GP and he has given me anti depressants but they give me nausea. I will have to persevere through till they work I guess. I have not been sleeping or eating and at times I feel that I’m losing my mind! I even rang the Samaritans one night at 3am just for someone to talk to. It’s not that I feel like harming myself, was just desperate. I’m not sure I will have the chemo, I’m a lot older though and I want quality of life. I feel bullied into treatment and it seems like a conveyor belt approach. My oncologist was awful and wouldn’t answer any of my questions so left floundering in the dark. I also have other health problems that will be exacerbated with chemo. Awful awful dilemma x
Right there with you with the emotional side. Currently on 4 different drugs just for my mood - I went suicidal after diagnosis. I refused to even consider chemo when they said I had to have it, and tbh I'm still doubting it now and I have to get a port put in tomorrow (kicked up a rigut fuss about that too, dreading it).
If you haven't already spoken to your gp about the mental health side then definitely do - anti depressants etc don't fix the problem but they are helping me push through. It's a long long road ahead and that's the part I'm struggling with most of all. Diagnosis out of thin air and strangers telling you they need to completely butcher you from the inside out to make you "better" when the cancer never even made you feel ill but the treatment will. It's just so unfair. X
I know exactly how you feel. My mental health has deteriorated since diagnosis and I am struggling with it all. I live alone but have adult children around but they have their own families to care for. I will have my operation soon and the team want me to have chemo afterwards but I am on the fence at the moment. I just want to say I feel for you as it’s awful and a long journey. I wish I was braver than I am but it’s terrifying to say the least .
sending support and hugs 🤗 x
Even with my husband being around, childcare is a challenge (we have a 3, 2 and 6 month old) as we don't want them running around during hosp appts etc and we don't have much other family nearby who can help so it means I'm going to have to do chemo alone (I've pulled shutters down on friends as can't bear them to see me being so vulnerable...i am so fiercely proud and hate the thought of looking like a victim) I totally get it, I'm really independent too so it's horrible having to ask for help.
I've gone the other way and barely eating since diagnosis (which was on my bloody birthday) I used to have anorexia many years ago and it's been hugely triggered. I'm a healthy weight these days but lost 12kg in a few months through stress and I'm worried the effect that will have on my treatment. This is such an ugly disease - the treatment more than anything - regardless of who we are, the impact on how we look can have huge repercussions on how we handle what we have to put up with. I'm petrified of all of it.
I too have had my surgery. Had a wee cry yesterday as already feel unattractive- already felt ugh due to weight gain from general pig out/growing older and caring/not caring on repeat about weight! I’m not huuuge (size 16), but I’ve always been a size 10 even after kids - now 9 and 7. Now I have boobs that are approx 7-8 cup sizes different, one without a nipple - and the prospect of being heavier than I want, wonky boobs AND bald is horrible. Eventually my surgeon will do a breast reduction on my remaining boob - but it’s going to be a long ride.
Very jealous you have a husband who works from home. Childcare has been a major stress for me as parents don’t live near and also work, so relying on friends, which is hard as I’m fiercely independent x Hope the cold cap works for you - let us know xx
I’m sorry I can’t help with advice re. cold cap; I hope someone else might be able to help there. My chemo is starting Friday, but I won’t be having a cold cap.
My mum had chemo and lost her hair, but she bought a wig very similar to her own style and you genuinely would never have known it wasn’t her real hair, so that’s an option if the cold cap isn’t as successful as you hope. She said she enjoyed not having to wash and style her hair for a while! Her hair grew back quickly after the treatment and it was actually nice to see her with different styles as it was growing out - she really suited a pixie crop, though she did grow it longer again.
I really hope you keep your hair; I know the cold cap works for a lot of people so fingers crossed.
I’ve used the cold cap for my first three weekly sessions and honestly it’s completely doable! I make herbal tea to drink and have warm scarves and clothes and just listen to guided meditations while I have the gloves on and read when my hands are free. I had quite long hair as well and cut it to just above shoulders to make it easier to manage with the cap and also just in case it does all fall out.
Hi Vaneysha and Twinklestar,
I had my hair cut down to a no3 the day before Chemo, opted out of cold cap and now on Day 16 I notice lots of little hair on my pillow and in the shower. So didn't take long to start the shed..Till I was in my 30's I had short hair so don't feel it as much as you guys but psychologically I think it's def just that final thing that says 'I have cancer'. Had some dark moments this morning.
I too teach at a secondary school Twinklestar but will have to be off for at least a year as am same as Vaneysha, HER +, and stuck with Herceptin for 18 cycles after initial chemo, so immune system scuppered for a while.
Hope you get wigs, hair sorted and just remember you are beautiful whatever ❤.
I feel like a brat but I'm in a fortunate position where I don't have to work and my husband is able to work from home indefinitely (but primarily look after the kids). I'm also very lucky to be able to get my treatment at a BMI so even though the treatment is all the same and I will still feel just as crap as anybody else, I have some options with getting good cold cap help from nurses etc. I will definitely be able to handle the pain the cold cap might bring but I just want to know if it's even worth having hope for doing it especially as I'll have to have it for 16 sessions.
I also had very long hair up until 3 days ago when I had it cut into a long bob. I thought it would upset me but it didn't and in fact I love it which makes the prospect of it all falling out even more upsetting. I'm just not a hats and headscarves kind of person. I'm really vain and I know it's arbitrary compared to our health but it really matters. My mental health has plummeted since my diagnosis and at the moment hair loss is on par with the fear of the cancer coming back. I just can't believe I have to deal with this. Still in that disbelief stage that I even have (had? They got rid of the tumour already so I don't even think I have cancer now???) cancer at all.
Vanesha- I don’t have any answers...!
But I am also worried. I went from saying -and really believing - I didn’t care about the hair as I just want to put health first. However, with chemo a real possibility for me now, surprise, surprise I find it actually does concern me! I found this Youtube video which I found fascinating looking at the difference even a week makes post chemo.
Are you looking to return to work? I’m concerned I’ll be desperate to get back to work at the end of it all as the £££££ will be in a dire state! I’m a teacher - so even though I doubt I’ll go straight back to the classroom, I’ll still be walking round the kids (secondary- so teenagers LOOK at the weird person with a gypsy headscarf ensemble! 😩)
My oncologist spoke about the cold cap. I spoke to someone who tried it - only managed one time they said it was really really uncomfortable- but everyone is different. I don’t think it’s for me. 6 months ago I had super long hair - but had a few chops for a change of look. Had highlight as well as a treat to start to disguise my sneaky greys (kind hairdresser calls them sparkles!). I no have a chin length bob of lovely hair I will miss a lot 😔 If I am having chemo (find out on 25th and will start 27) I’m doing to get the shortest pixie cut possible. I don’t feel able to shave it 😔 Good luck x
Starting EC chemo x 4 every 2 weeks on Wednesday, then taxol x 12 every week followed by hercpetin every 3 weeks for...ages, can't remember how long, I struggle to even listen to what they're telling me.
I'm so, so scared. I'm in my early 30s with very young kids and it's the hair in particular I'm so upset at losing. I have a wig on standby and I will be trying the Paxman cold cap but it just seems like the amount of Chemo I'm getting means total hair loss is guaranteed isn't it? Really just want some hope that I might keep my hair if anyone has any positive comments. I can even handle hair actually falling out and being bald during the treatment but it's the time it'll take to grow back afterwards that really upsets me. I really want to keep my hair 😔
I have stage 2 IDC grade 3 HER+ and ER+. Didnt spread to lymph nodes.
Great news that it went smoothly Helen despite the really long delay...that is really rubbish regarding the 2 chemo wards, always amazes me how the nurses and staff keep going and juggle everyone and everything...
Looking forward to your crochet efforts, I feel like I need to take up a hobby.
I have bought journals to write stories for my kids. I have meant to do it for years so guess now's a good a time as any...although now what you mean, my words are jumbled for at least a week after Chemo!!
Hope everyone is having a good weekend.
First treatment down...feeling much better than I thought.
I was meant to start at 1.45..but started in the chair nearly 3 hours later, finished at 7ish. Apparently the nurses call it Black Friday as there are alot of people with complicated and long regimens who come every three weeks on a Friday! Also our hospital is now having to serve two extra inner city hospitals who have closed their chemo wards...I won't say anything political..... They were multitasking like crazy but still managed to be cheerful and informative. The good side of waiting was the chatting and comaradery between everyone....My anxiety melted away. The only think is I got a slight sting with the E when it went in but that may have been from the freshly sterilised PICC.
I feel a bit spacey and lacking in appetite. No nausea so far. I fed the dog twice (she isn't complaining!), and have been doing lots of word switching and weird spellings..this must be the start of chemo brain...
So I totally understand why foot could look like front...lucky Mini the rabbit to be named twice !!! You are very skilful Debs...I am crocheting some Christmas presents this year..but I am , by comparison, a bit basic !!
Great to hear your 1st one went well Nhlanhla, can't believe you had an exam.
And love the rabbit Debknits!!
Yes, forgot to say thank you for your positive messages and thoughts mini mad, always good to hearfrom someone who has come out the other side. I guess there are so many side ffects we don't think about but happy you are doing well and have hair 😊