hi everyone,
there’s a few familiar faces on here from another thread who already know my story, but its really surprised me how many younger women seem to be affected by this when all the professionals tell you how rare it is. I am 35, a single mum to 11 yr old was diagnosed in april (no family history) grad 2 11mm invasive ductal carcinoma with DCIS, lymph nodes/margins clear.
Salsal - like you i was told to ‘expect’ chemo due to my age regardless of the results really, but kinda convinced myself it was’nt as bad as all that only grade 2 and tiny so i’d probably get away with it - they were just telling me worst case scenario and covering their backs. So it did come as a huge shock when after seeing the ONC they wanted to proceed with Chemo and i had my doubts about accepting this treatment. I think Lulu’s story has convinced me i’m doing the right thing (thanks lulu for sharing it. They say it only makes 3% difference in preventing recurrence/secondaries, but for the sacrifice of my hair i guess its just not worth the risk, however unlikely it may be that it could come back in the future.
I have had lots of support from friends and family…but no-one knows what you are going through like the girls on here. If one more friend tells me i can grow my dreads back - i might have to punch them in the face! True my hair WILL grow…but will it be 3ft long dreads again??? Not before i’m 50!! Unfortunately for me my hair really does define who i am to a certain extent and although some of it is vanity/confidence it also encompasses my whole lifestyle/beliefs so coming to terms with this loss is the most arduous aspect of the whole BC journey for me so far.
I feel like not only has it brought on pre-mature fears for your own mortality, pre-mature menopause but also pre-mature mid-life crisis…i’ll be getting bald and fat - women aren’t supposed to have to deal with that (i’ve already been looking at shiney red sports cars to make up for it)!
The girls on here who have been through it or are going through it with you are truely an inspiration, and although we all have different stories our fears and what drives us to overcome them are the same and i personally draw a lot of comfort from that!
Sorry about the epic novel here…got pretty deep! I blame it on the chemo!
xx
pixie did you go for the cold cap in the end? or are you just gonna brave it GI jane style?
i get annoyed with people too telling me ‘oh you got through it once you can do it again’ only the first time was a wee piddly thing with a 96% survival rate at 10 years and only 11% risk of relapse (although would have been 99% survival and 6% relapse with chemo… but wasnt offered it first time) tamoxifen for 5 years decreases my risk of recurrance by 7% and increases survival by 1%… hardly seems worth it. LOL
with 2nd cancer the rates at 10 years are 88% survival rate and a 22% risk of relapse after chemo (without chemo its 81% survival and 30% chance of relapse). its not just as straightforward as the first one.
both cancers are completely unrelated… im just super unlucky LOL
sehigh the chemo isnt as bad as i though it would be… im on day 12 of my first cycle and all i really have is a bit of indigestion, a furry tongue and feeling tired (but wide awake in the middle of the night). hope yours isnt too bad to bear.
morning,
I did try the cold cap…wasnt too uncomfy but recon my hair is too thick for it to make any real difference…think i might literally be clutching at hairs with this one, but no harm in trying!!!
Chemo ‘hangover’ is a little less severe today and put the reins on my brain to stop it running ahead of itself…i’m usually a ‘look on the bright-side’ kinda gal, so will have to be more prepared for that little side-effect next time round and make sure i don’t get too much down-time to think myself into a tizzy - gotta keep busy!
Thanks for your postings lulu - helps put things into perspective, you must be brilliant at your job on the student nurse website!!
xx
Pixie, I kinda know what you mean about the hair thing, I too thought I would get away with not having chemo as my nodes/margins were clear so was shocked to hear they recommended chemo, and ‘top whack’ because of my age too. I just didn’t actually believe it was all going to happen and I still haven’t really accepted it yet, just best to do what they tell me and deal with it as it comes along. The other thing that really worried me was the infertility risk (I have no children) but luckily I went to see an amazing gynaecologist who really put my mind at risk - 85% of people my age get their periods back (and I had one after first FEC anyway which I wasn’t expecting) and she scanned my ovaries to see that all was well, said egg freezing is optional but she thinks my chances of conceiving would be naturally higher anyway. Guess all I can do is see what happens and if it’s meant to be, am becoming a big believer in that sort of thing now, there’s only so much I can worry about! I am looking forward to a couple of years from now when I can look back at this as a massive thing that happened, but that actually had some positive outcome. Here’s hoping anyway …! You probably won’t hear me being so positive when my hair is growing back like a bog brush :o)
frances from what ive heard if your under 40 you have a higher chance of your periods coming back but if your over 40 you have a higher chance of becoming menopausal… basically the closer to the menopause you are the more likely to go through it… at 29 id say your pretty far away from it will hopefully have plenty opportunities to bambinos.
thanks pixie sometimes i worry about posting stats in case it scares or bamboozles people… fingers crossed with the cold cap… i had heard that the weight of your hair can have an effect on whether you hang on to it as well so maybe you can wear a hat or something to support it… but not bobbles or bands as they are more likely to break the hair.
lulu x
Hi all,
Havent been on here much recently…as Ive been recovering from my lumpectomy and lymph node removal. The op itself and the recovery hasnt been too bad at all really (apart from a very sore arm !!) its just I have been inundated with visitors ever since…they have been more tiring than anything else! And I know they all mean well but like one of you said if one more person tells me about my hair loss it will grow back…I will punch them !!! I know all about this but it doesnt make me feel any better ! Im am so scared about losing my hair. I know in the grand scheme of things its a small price to pay but I know how much it will knock my confidence, Im scared I will start to look ill, Im scared that my kids will be scared and am scared that they will know Im ill…where at the moment they have been pretty much unaffected !!! Its awful and I know Im gonna be really really sad when I do lose it.
I have heard of that cold cap but was told its extremely painful and losing your hair was far less worse than the treatment with the cap ? You didnt say if it was real bad or not?
I have to go back on Thurs for the rest of the news from my lymph nodes and to find out my treatment. Im gearing myself up to expect chemo and radio…and to be fair I think Ill be scared if they tell me Im not having chemo because of the fear of it coming back somewhere else.
Although i sound like a manic depressive…Im actually very upbeat about the whole thing. After getting the first 2 weeks out of the way I no longer see it as a death sentence. I have been amazed at the amount of people who have had it and been clear for years. I truly dont see it as a death sentance anymore its just something Ive got to go through…a journey I dont want to be on…but I will come out the other side. Especially with all your comments and support. It really does help speaking to people who know how you are feeling.
Keep in touch everyone…xxxx
Hey lovely ladies.
Recovering from first FEC on thursday and feel ok if not a little pregnant~! Acid indigestion and funny smells and funny tastes but nothing else! Feel totally blessed as i have a 2yr old and a 11mth old and cant not afford to be ill!
Like you sal sal i am worried about my hair upsetting my kids but i am not too worried about loosing it in myself. My mum is upset and i think she will find it harder than me as it makes things so obvious that you are actually ill! REgardless of feeling ok.
A journey to be conquered and bloody hell will i conquer it!
Lots love
S
Salsal, I used the cold cap and didn’t find it painful at all! For the first ten minutes or so it does feel really cold and you get a mild headache, but nothing more than a bit unpleasant really. The brilliant thing was I kept my hair, although it is a bit thinner than before, but it is below my shoulders and absolutely fine. I finished chemo about 6/7 weeks ago. Losing my hair meant losing my confidence and I’m sure some of it is still there through sheer willpower!
Anyway, I just wanted to say give it a go…it isn’t for everyone, but worth a shot.
i agree with janet…if you’ve managed childbirth…the cold cap is nothing!! The only bit that was slightly intolerable was on the forehead at the beginning, but the nurse just stuffed some gauze up there and it was fine.
Totally understanding where you are coming from with the confidence thing salsal and also francescap - i also think everything happens for a reason! (still yet to figure out the reasons for this one tho!!)
xx
Hi girls…feeling really low today and could really do with some words of encouragement !!!
Went back to the hopsital for the results of my lypmh nodes and lumpectomy yesterday and have had yet more bad news and another kick in the teeth ! The doctors said that the tumour was much larger they orignally thought (7cm) and that Im looking at more surgery…if Im lucky taking more tissue if not a full masectomy.
They took out 7 lymph nodes and 4 had cancer in but 3 didnt…said this was a positive and that the lymph nodes had done they’re job of filtering it…are they just trying to make me feel better ??
Theyve graded it as 3 now and said Im definitely looking at chemo…they just need to decide how to play it…chemo first then surgery or surgery then chemo…feel like the last op was a complete waste of time.
Ive gone from being real positive to rock bottom again…feel just like I did when I first found out. I cant look at my girls without filling up. They said Im still treatable but cant stop thinking that Ive just got no luck anymore and now Im probably done for…xxx
salsal, Sending you big hugs (((((((((((())))))))))))))))
Please don’t be too despondent,you still have many things in your favour.(only 3 nodes not 33!)It must be so bloody hard being given worse news than you expected after surgery.The important thing is getting rid of the whole tumour ,hopefully just another lumpectomy.Try just taking it one stage at a time and not looking too far ahead in your treatment.
But most importantly be kind to your self and don’t beat yourself up about being scared or upset…its natural.
(((((((((()))))))))))))
Love
Dot
x
Salsal sending you hugs also(((((((((((((((((()))))))))))))))))
I know where your coming from as i too had to have more surgery after the lumpectomy when all 6 of my nodes tested were positive then went on to have 8/14 after the 2nd op. Like you say it’s a real kick in the teeth after all the waiting etc.
All i can say is to take each day as it comes i have good days and bad days (or should i say moments) but it will get easier with time. I was meant to start chemo on wednesday and built mtself up for it only to get a infection in my boob on tuesday WTF. so now dealing with that.
I hoe you manage to get the op sooner rather than later so your healing process can begin.
Hugs again
Gina xx
hi salsal,
i am so sorry you didn’t get the results you hoped for. i hate this BC so much for what it does to young women with kids. that fear and pain in the pit of your belly is crippling when you look at their faces and fear for their future. you are not alone though.
yes you have had a big set back and are wondering how you can pick yourself up again, but try to focus on the fact that they have said you are treatable. you are not done for, you have just had a massive kick in the teeth so go easy on yourself.
when you need to rant come here and do it… we will all listen.
sending you massive hugs xxxxx
becky
salsal (((((hugs)))))
sorry your having a hard time right now hunny… although its in your nodes its only in a few and sounds like the rest are clear and the chemo should mop up any stray cancer cells… i know thats probably not really reassuring at the moment and i know you will still worry but once you know more about whats happening im sure you will be able to get your head round it a bit more.
i know each bit of new ‘negative’ info just pushes you down and scares the shit out of you more… i have ended up on antidepressants which are def helping.
just take your time to digest the info and take each day as it comes its a real rollercoaster ride… and not a fun one.
i had two lots of surgery with my first cancer too and this seems to be fairly common think they said about 20% need a re-excision which is one in 5.
hope the rest of your treatment goes well.
Lxx
Hi salsal
i too find myself in a similar position - I was originally told that my lump was Grade 2 2 cm and no nodes - after surgery it is 3.5cm 4/23 nodes involved Grade two but after major surgery having therepeutic mammoplasty now have to go back to have mastectomy. Felt totally defeated - I have had CT and bone scans that have come back clear and 5 weeks after first surgery am now scheduled for more. Some days are bad and some are ok - I have had sleeping tablets and Diazepam but am now mananging without but they got me through the early days and I would do the same again in a heartbeat.
I have three relatively young children and I really do understand what you are going through - as do all the women on here, for information it has been invaluable being able to post here.
Denise x
PS Lulu are you having T in the Park at home anyway!!! You go!!
LOL
Denisex
momo i am indeed having T in the lounge :o) complete with wellies, sleeping bag and wine… just no portaloos with poo pyramids.
Girls,
Once again thank you all so much for your support…it really does help to lift my spirits…although I will admitt Im struggling to pick myself up and dust myself down after this last kick in the teeth !! Its so awful when your trying so hard to be positive and you just seem to get one kick in the teeth after another ! Surely the bad news has to stop some time ?
Ive been glad its the weekend…my girls wear me out but they also keep me going and keep me strong. Being so busy with them doesnt allow me too much time to dwell on how wrong things can still go.
Tuesday aft is the next thing hanging over me…should find out whether its more surgery first then chemo or chemo then surgery…got to rely on the experts but am dreading either to be honest.
The worst thing about all this is not having anything to look forward to…I just feel like all I have ahead of me is treatment and more treatment with no happy times to look forward to. Hopefully there will be light at the end of the tunnel for me…but it seems very distant at the moment.
Hope you are all well xxxx
aww salsal (((hugs)))
i know what you mean… i was looking forward to my holiday and had to cancel that , so was looking forward to T in the park and had to cancel that… was looking forward to my friends coming for the weekend but have to cancel that too… only thing im looking forward to now is next year and it all being over… bring on 2010!!!
salsal good to hear from you… there are good times ahead of you but you may not be able to see that now when faced with the long treatment journey. i can’t believe that i’m already half way through my chemo, it goes so quickly.
i had a happy day yesterday… me, my hubby, and my baby boy bought a fishing rod and went down the beach and fished for mackerel… we didn’t catch anything but watching my hubby try to work out how to use a fishing rod was fantastic. i laughed so much my sides hurt today…
i love the picture lulu!