Hi everyone, Zjlruss we have had a very similar experience I was 34 when diagnosed with a 3 & 1 year old had to have a bilateral mastectomy and am now waiting on having a recon so would be good to talk to you and see what happens with a recon, had to have chemo after surgery, then radio and have only just finished a year of herceptin and currently on Tamoxifen. Have only just really more or less told everyone I know as hid it well on the school run under my hats etc no one had a clue what I was going through. I looking forward to seeing you all x
... View more
Hello ladies, its been a while I not even sure if you will see this thread as am a little confused with this new website!!! Have you guys been keeping in touch I have not seen any posts since January 2013. i wanted to know how your all doing. I finally finished my Herceptin so am now waiting on having a recon once that has happened I will feel like I can get on with things and not have to think about bc so much. Hows your hair growth mine growing pretty much the same as it was but it feels like its taking forever I just want a bob still cant do anythingnwith my hair but at least its growing back. Let me know how you all are how you coped since chemo finished. Hope your all doing welll. Rosie xxxxx
... View more
Thank you Sam, Val & Rae for your replies, I will try and speak to my bcn to see if an appt can be arranged, Rae I have not heard of Letrazole before is that to suppress hormones as well? I hope this delaying of zoladex or ovary removal does cause more problems! i hope tamoxifen is doing what its supposed too!
thank you again ladies
... View more
I am currently having herceptin & finished chemo 6 months ago, as soon as I started chemo my periods stopped which I was fine about but they have come back and now I am most concerned because my cancer is er+, I have briefly spoken to my onc about ovary removal but they seemed to prefer for me to go down the zoladex route. What I want to know is whats the difference? Both put you in to early menopause and if the main concern is that I am producing to much oestrogen with my cycles surely ovary removal would be the answer. I was told that Zoladex would be given along with Tamoxifen for 5 years but then what would happen would my periods return as I'd still only be 40 or does Zoladex stop all of that permanently? Also has anyone else experienced their onc not really wanting to discuss ovary removal is it because of my age? I have had my children so I have expressed that I would feel more at ease having an operation rather than taking more and more medication to suppress this hormone. Also i've done my treatments (chemo, radio)to hopefully blitz this bugger but now I feel like thats it i'm not getting much info on what happens next the doctors say they only need to see me every three months so I feel like I'm left hanging wanting to do something more to prevent reoccurrence but not really sure what or who to turn to with regards to alternative therapies. I mean all I've been told is that I am fine but should I feel any symptoms to let them know! So now I'm thinking how do they monitor cancer coming back if they can't see it in blood tests which is all they do to me. I feel like i'm just waiting for it to return because I dont know what else to do to ward it off !! Any advice would be much appreciated.
... View more
Hi Jo, hi ladies,
Jo thanks for sharing your blog pictures great idea looking back i forgotten what i looked like completely bald and never wanted to take pictures my hair length is prob at your month 3 stage. your eyelashes look great my are still v short and not thick at all and i am post 4 months chemo treatment when did you finish. How many rads are you having I had 15 sessions and by the last week my skin went really red and sunburnt like, its calmed down now but still there I have been putting vitamin e oil on it hoping that it will help as they took so much skin away on my left side I am quite concerned that I wont be able to have a recon done as i feel theres not enough skin to stretch there. Fingers crossed its not the case.
With the herceptin I have been ok I am half way through it now so hoping there wont be any long lasting damage, No major side effects same with the tamoxifen although i do forget to take it everyday!!!
Have you been doing anything with your hair that helps it grow faster or stimulate the growth. I am still wearing my wig as I still havent the guts to go without I was one of those girls that liked to hide behind her hair if i were to go out without my wig I would feel over exposed plus I dont want to happen to me what happen to you in the coffee shop where someone asked you what made you cut your hair so short???
Your wedding day is only weeks away amazing when you look back and think all that you have been through and you now have this beautiful day to look forward too. Wishing you all the best for your special day
wishing you all a happy easter and pray you are all getting on well
... View more
I was diagnosed in May 2012 at age 35 have two girls a 4 & 2 year old think when dr told me i was in denial and kept expecting the hospital to call me to announce it was all a big mistake an administrative error and that it wasnt me,instead after about five different sample tests i was adviced to have a bilateral mx as left boob had tumour and right boob had dcis which i was warned was too risky to keep so its been 9 months that i have been living breast free,i was told immediate recon or expanders or anything was not possible due to me having to have rads aswell. I would say the operation and recovery is pretty staright forward and that the winter months are fine as you can hide away under thick jumpers etc its only now as summer approaches and bikinis are in every shop window display that i feel the loss of them and get upset when i see women advertising bras and cossies etc. I dont feel like a woman anymore and cant bring myself to look in the mirror as its just something i dont want to see but im sure if i had kept my right boob i would be obsessing and checking it all the time but even with a bilateral mx it doesnt change how you feel i spend my days just constantly worrying that it will come back somewhere else and what things can i do to reduce the chances. Its a very hard descision to make but if you feel it will put your mind at ease then go for it unfortuantely once you have been hit with something like this it feels that that feeling is never far away.
... View more
hello ladies, its been a while since i last posted how are you all doing. I finished my rads end of Jan had it for 3 weeks it was ok but by my third week the skin started to get sore and even now i have a square red sunburnt box shaped on my left side, it hasnt faded but as long as it worked i dont care. I still have another 7 months of herceptin by then I hope to feel better and feel like this journey is coming to an end although after that I will have to look into reconstruction but I dont care as long as this never comes back. Does anyone else have that thought constantly weighing on their minds I cant seem to get rid of it that feeling is always there no matter what i do and when friends or family say oh your treatments finished well done I think you just havent the foggiest of how this C makes you feel. Its so hard to explain to people unless they are going through it because they would never understand. For me it goes beyond treatment its a whole life change and a life change that you have to stick to its not like giving up the booze for a month is it!! My days revolve around being conscious of what food I'm eating to am I doing enough exercise to can I drink normal milk is this going to bring it back etc... bah!!! its all to much, and then other times I'm just bitter, I look around me at other mums taking their kids to school moaning because their tired or have a cold and I'm there thinking I'm wearing a wig and hiding under a hat to bring my daughter to school because I recentley finished chemo please dont moan to me about your cold!!!!
Hows the hair growth girls my brows have returned but really wild looking i dont want to go and get them threaded until they are fully back my lashes are there but not enough to put mascara on they are growing back very slowly. Hair on my head has appeared but so short and I know I will be wearing my wig until I have a bob!!! I'm the worst person to have gone through chemo because I don't want anyone to know about my illness and so hide it well under my wigs and hats no one on that school run suspects a thing if anything they prob think i'm a little odd!!!
Can anyone tell me what happens next I've had the chemo and the rads but I haave yet to see an oncologist and also feel that when I do see one I'm not really told anything they dont seem to do any tests to put my mind at ease they just tell me to take my tamoxifen and thats it. Has anyone else started on tamoxifen and how are you getting on with it, so far I havent any side effects apart from the hot flushes they are so bad and get worse at night. I asked my doctor about having my ovaries removed so that there was less chance of me producing estrogen but they didnt seem to think that was a good idea, but if i'm really adamant i want them taken out do you think they would do it, basically if theres less chance of this disease returning by me having bits removed from my body which i dont really need anymore i'm more than happy to do it .
oh well ladies i hope your all doing ok and feeling good if sorry if i've gone i just have so many concerns that doctors just dont seem to understand.
... View more
Hi gals, I'm in waiting room again waiting to be called for my 4th rad, so far ok but as I understand the skin does get affected towards the end thank u ladies who have had rads & let us know what happens! Jellytot im rubbish with the abbrv what have u had done & what do u have to go back for, will it be a full on op again??? The worst about rhe rads for me has been the havin to take off my top & hat in front of strangers as they mark my body & read out numbers to eachother i havent the foggiest wot they are up to but sounds v much like you need to have done a degree in math to be a radiographer!! No one has seen my scars & then im on that bed all exposed, i know they see it every day but it doesnt make it any easier i really miss my boobs & feel v alien without them God knows when a reconstruction will happen drs havent really discussed it i hope it will be done though im only 35 i cant not have boobs. Does anyone have tips on hair growth especially head hair & eyebrows & lashes, head hair is coming back but not fast enough & lashes & brows are non exsistent. Also are any of you following a diet to prevent reoccurence
I hope you are all doing ok
... View more
sian I had cording after my op to be fair I didn't really follow the exercises only when I remembered & then I'd just do the easy ones just stretching the arms in front of you it eased up after a few weeks post op like madjock said I felt I was doing enough exercises with my kids!!! Sian I too had 6 nodes affected but I like what Maggie wrote & that's the way to think that they were there protecting the rest of the body doing there purpose. My oh always tells me to stay positive because if something happens to me he'll put my kids in a home he says that to keep me focused & not think negative thoughts. Can't believe u have so far to travel for rads im having to get on the tube everyday to central London so I'm treating it as if I'm going to work. after chemo rads are pretty straight forward I think if we can get through chemo we can get through anything.
Madjock thank u so much for sharing the story about your mum it gives hope as I find I always tend to focus on the negative stories & thino the worst I'm goin in for rad no 3 chat soon ladies
... View more
Hi girls, happy new year to you all I hope u managed to enjoy the holidays! I'm in the hospital waiting room waiting to be called for my first rad bah!!! I have 3 weeks of it I hope all the treAtment will work everyday I wake up with the dreaded thought of reoccurrence maybe I feel worse when I have to come to hospital. I started tamoxifen a week ago so far just a nasty taste in my mouth the hot flushes I had after chemo there part of my day seemed to have got used to them. Is anyone else feeling scared I mean I don't know am I doin enough to rid this bugger 4 ever it doesn't help that I just read a post about a girl who's mum died 10 years later that's put me in a bad frame of mind arghhhh. Sorry girls I think I'm feeling like this because I'm here in this place & everyone else around me on the tube in reception they've all got their hair & breasts & eat & drink whatever they like & I feel like why does this have to happen why? Girls if any of u in London & want to meet up would like that xxxxx
... View more
I am having my fourth Herceptin at the moment, hopefully no side effects as have another 14 to go can't believe I have to come to hospital every 3 weeks for the next 12 months, am so fed up of it already I still dread needles even after all this time.
Laurable I hope you are recovering well let the drugs kick in to numb any pain hon thinking of you.
Angela I have 15 rads to do in January did u find it exhausting or were you ok on a daily basis, would you say you need to rub lots of creme in im scared that rads will bring on lymphedema. Does anyone who had their nodes removed do regular arm exercises i dont do any at all but apparently your supposed to is that right?
Sian ive purchased a pair of lashes as well let me know how you get on with them, are lashes reuseable? Otherwise i have to buy loads more as i cant wear mascara lashes barely there 😞
Hope you all getting on with the stress of treatment and christmas ok
... View more
Forgot to say I still have to undergo Herceptin every 3 weeks for the next year so that portocath is not moving for a while god knows when recon will be long long road I hope this C doesn't come back xxxxxxx
... View more
Missions finding this thread today I had to go past 30 odd pages! I've managed to catchup on your posts and I too have finally finished chemo my start date for radiotherapy is 7th January, so got that to look forward too ba!!!!!! the T gave me the trots as usual and I'm just hoping it doesn't attacthey hair again as the peachy fuzz is appearing now. Jellytot did u get the MRI results yesterday, well done on your blog it's fantastic info for someone whose just been given the news. Sian I've had a bilateral mastectomy and I never wear my prosthesis everyone's different like I can't leave the housewithout my wig but no one really notices the missing boobs and when I have worn them I find they weigh me down as I'm so used to not having a bra on now but I hated bras anyway I've always found them uncomfortable, when I finally found a nice comfy Calvin kline one i had the operation 😞 i think your v brave to go out without hats or wig i couldnt do it. my hair is not growing at all it's v upsetting as I'm getting fed up with my wig as its looking manky now and Im not entitled to another one until January, has anyone washed theirs what did it come out like? Has anyone's brows or lashes started to grow I keep having to paint my brows on every morning and when in a rush not to well i put my hat on to coverthem. Is there something available that makes hair grow like a vitamin supplement or something or a oil.
Michelle HeAton had a mastectomy last week I thnk I know it's differentbecause she hasn't had to undergo the horror of treatments
Thinking of you all as always ladies.xxxxxxxxx
... View more
Hiya girls hope your all doing well with no further side effects,
I am currently in hospital having my fifth chemo + Herceptin, looks like I will be here all day as they have to monitor me an hour after each dose make sure I get no bad reactions.
I haven't been putting on my dark nail varnish at all have you ladies been doing that, not really sure what it's supposed to do, is it just supposed to stop us from seeing our nails go bad or does it actually prevent our nails from going bad as when I asked my onc he didn't seem to believe in that at all said he knew nothing about it. Also are any of you suffering from hot hot flushes at night, mine seems to have started after the docetaxel so I get boiling hot and then cold all throughout the night not sure if it's the Herceptin or the t, so much stuff being pumped into my body, I've still got the trots not as bad as it was but still abnormal for me as I never use to go to the toilet. The nurses don't seem to know much when I tell them my side effects they just note it down guess I have to wait until I see my onc in three weeks time, am I the only one left who's not finished her chemo, mind you I have A year of Herceptin so I still will need to come up here all the time, I hate it. I'm so glad to hear your headhair is growing back I'm so fed up of wig now hope head hair grows fast. Body hair probably will grow first on me argh!!
Hazza81, nice of your friend to call u after 3 years but really couldn't she just listen as opposed to wind you up doesn't she understand that stress is something you can do without. You definetly find out who your real friends are through out this, hope you feeling better now hon.
Regarding the operation the only thing that really bothered me were the drains whatever you do when u have to get them removed make sure it is not a student nurse doing it! I know they need to learn but surely they can do it on someone less vulnerable, I was so upset she made me scream my head ofIan's I cried so much that I demanded a fully competent nurse do the rest. It's wasn't a nice feeling for me a horrible burning sensation, the doctors and nurses just say its uncomfortable, that's balls my lovelies, it's hurts!!! Be prepared, mind you I had 4 the ones under my arms weren't as bad as the ones on my chest.
Prob will post later I'm here all day
Take care girls thanks for all your encouraging comments as well much appreciated
... View more
Well done Laurable and Jelly on reaching the finishing line! I was supposed to have my 5th chemo (2nd T) last friday but after seeing the Onc she said because my body was still suffering from the first T (I still have the trots and doesnt seem to be getting any better) she has delayed my chemo by one week so I have my 5th one this Friday now. I just want it all to end girls i really feel like im not really doing anything inbetween each chemo session i just wait for the next one by counting down the days, at least i know it will be finished by christmas. I havent asked when the Rads are supposed to start yet all one step at a time. I see that nobodies Side effects got any worse with the 5th and 6th chemo it all pretty much stayed the same, Im hoping my blood counts stay normal this time round. I think i will be having injections for 5 days as opposed to just 2 which they gave to me after the FEC. I so desperately want my hair to grow back Im getting fedup of my wig and hat now i look like im trying to disguise my self every time i go out, wish i was the type of person that could just go outside with just headscarf of nothing at all but im not, so many girls at the hospital come in with nothing at all on their heads and i think they are amazing, but i look at myself in the mirror and just think i look ill its like it reminds me of what i have where as with a wig i dont have to notice my drastic physical change. Not having eyebrows doesnt help, omg why does it have to take the eyebrows away as well have we not suffered enough these last few months. Girls for those of you worrying about operation I can honestly tell you it is nothing compared to chemo, you have proved your inner strength by getting through chemo, the op is a piece of P*** basically. I had mastec without recon and i actually dealt with having no breasts better than having no hair, dont get me wrong i am still angry at what this cancer has done to me and my body but i think you can just hide the breast part cant you but you cant hide the no hair and no eyebrows, or lashes etc. i was in the hospital for two days, worst part for me was the drains as carrying them around to go toilet and have a wash was really annoying but they were removed by the third day and then i was home basically i didnt drive for about 3 weeks and you cant do heavy lifting for 6 weeks so for those of you working def get docs note for 6 weeks minimum its the only way your fully recover if having mastectomy well i had double so i was really worried about wound opening or something.
got go pick up my little one at nursery but if anyone has any questions re op pleasse feel free to ask me anything if it helps
... View more
I finally left the hospital on mon evening I was begging them to let me go as soon they got my blood results and I was told that it had gone back to normal I practically leaped out the hospital window!!! I have my next docetaxel on Friday so I'm hoping it won't effect me like the last one, I think the majority of us suffered with the neutropenia after the first dose of T but after your second dose you have all managed to stay away from hospital haven't you. My eyebrows are thinning out a lot anwith don't bother with mascara at the moment cosI when I remove it the eyelashes come off as well!! I found its getting harder and harder as time goes on mentally, I just feel like it never ends and I can't plan ahead as soon as I've had chemo I just counting down the days till the next one and not really doing much In between. I've found benefit cosmetics have a good eyebrow kit although I did get the wrong colour.
Jelly I will be having rads after th chemo too so will def be wanting to compare notes re side effects.
... View more
Well the docetaxel got me in the end had to rush to a &e last night got neutropenia, now stuck in hosp don't know when I'm going home, really fed up stuck here, in isolation peeing like an old woman in a chair cos I'm not allowed to leave the room, have just been asked if I would like to be washed my a 20 year old! Male nurse said he'd wait behind the curtain as I peed, honestly isn't chemo bad enough, this has to happen as well I just want to cry and cry and cry feel like its never going to end. Is this going to happen everytime after docetaxel, I hope not couldn'thandle this, hate hospitals, get no sleep, no privacy I have a portacath put in and they still stuck a cannula in my arm, cause I'm gona get lymphodeama at this rate! Sorry girls I'm tired and fed up feel like I. In jail the sun is actually shining outside I should be with my girls in a park not in a boiling hot hospital room argh!!!
Hope you all feeling better than I am. Girls x xxxx
... View more
gosh so much has been happening with you all, this T is def been the worst for se. i had T on Fri so am post day 5 and not been to bad more or less have the feeling of being run down you know how your body gets before a cold comes along, i basically had chills really badly where ive been in bed with a hot water bottle, two duvets and fleece pjamas!! and still shivering and then in the day time i have slight muscle ache where i just dont want to do anything i just want to sleep so bad and have lie ins. impossible with my little rugrats!! i have sore throat like burning that wont go and also on the side of my portacath there appears to be a slight rash and is itchy it appeared the day after chemo and i worried could it be a blocked vain or something as this time round they couldnt get the vain to work as well so i was feeling sore their already, to be honest i dont want to call hospital cos i dont want to go. im fed up of hospitals and chemo now its just driving me mad, i know what your saying its already oct only two more to go but then i have to face everything else, at least hopefully will have nice virgin hair again ay
thanks jelly tot for the info on the forum i think may end up in the london one if they do one as think may be my last chemo come nov.
take it easy ladies lots of warm hugs
... View more
Jelly tot can't believe your nearly there towards the end of chemo must feel good counting down those chemo dates! I had to go in to hospital today to get my t chemo as yesterday because of the herceptin being given to me for the first time and having to be monitored it got to late to have the chemo I was shattered didn't leave the hospital till gone 7pm and then had to be ther again at 9 a.m. Today but that's chemo 4 done now phew!! I feel ok so far have just taken domperidone tablets and tomo will take the Dex. Am hoping I don't get awful se need to feel good for kids sake. Claire hope your feeling ok and not panicking about cyst good on you asking the surgeon more questions I feel like they can fob you off just because they have a full waiting room and because of our ages. I always feel rushed when I see a dr from surgeon to onc I don't really knw what's happening with me I just go with what they say my life itherein hands. I want to go to the Brighton forum what do you do about going do you just email them and get a place booked. ideally wanted a London one do you know if any London ones are coming up at all.
Hope you all,Hava good night sleep I feel wired very tired bit the sleeps just not happening!
... View more
Well I am here at uch been here since 09:30 and am only now having the saline drip put in, there was probs with my portacath seemed blocked had to be taken out several times blah makes me feel sick hate needles don't know how you all manage with canulas. Looks like I will be here till evenin as having herceptin for the first time, the dreaded t & then something else. Can't wait for all this to b over & pray won't ever have to go thru this again. I have a year of herceptin so I have blimmin long road ahead. Hope your all recovering well from your last t will keep u posted on se don't mind if I get trots as fec constipated me so bad.
... View more