they have eased linda thankyou… am sure i get so anxious then they build up but have been much better but wont speak too soon lol take care x
Hi All
Thank you for your encouraging comments again. Interesting about Carboplatin… will keep this in mind when I am given options in the future.
Sadie. Yes the little dog is/was mine, but she had two mums and has now gone to live with the other mum! (All sounds so sentimental, but a friend and I shared her and it worked really well till I moved house.) I see her though when I go back to my home town in Monmouth, which I often do. Maybe we could meet up half way between Monouth and Worcester sometime? There is a bus to Hereford… I am carless now.
Thinking of you all. All in the same boat, just keeping each other afloat. (Excuse the doggerel)
Jo xx
Hello everyone,
Hope its ok if come and join in . . .
boy this is hard to write! Am just coming to terms with being diagnosed a 3rd time with TN breast cancer (hope got that right- been reading your thread on and off last few days and have buffed up on terminology!)
Am 32yrs old, was diagnosed in March 2010, just celebrated my year on, completing treatment etc, when was re diagnosed end of March 2011. Had a skin co-occurrence on same breast- had mastectomy April (originally had lumpectomy) and they found another primary tumour underneath my skin co-occurrence. Was just beginning to relax and recover from mastectomy, thinking I might have had another lucky escape, but have now got further skin mets diagnosed 2 wks ago. I don’t think they quite cleared the margins when they did the surgery- so they grew back scar outwards, and have spread to a wide area tracking down my mastectomy scar. Its more like a rash than individual dots, and is quite lumpy. Am waiting to start chemotherapy (next week) carboplatin and gemocitabine (not sure that’s how you spell them!)so, slightly different to you fairyqueen.
To be honest I want surgery just to remove the whole are, as (appears) local, but oncologist felt they would just grow back- so chemo. He also said - devastatingly- that he felt it would now be more about management from now on. Was totally shocked to have this told that he thinks no hope of living without this BC crap. (this was two wk’s ago) haven’t really accepted that will definatley b the case, and am building up strength to give it all i’ve got. . .
Im a christian, which is so important and helpful
Just trying to decide if want to have further scans. My oncologist is letting me decide, don’t know if I’m ready to be told its anywhere else. I feel quite well otherwise, blood test continue to be ok and chest x ray in April was ok.
Really appreciate knowing others out there, your thread has helped so much. . .
hi amberlouise i am so sorry you have this continued recurrence like myself if you ever want to pm me feel free i too think i have probs in other breast now , i would be happy to have your chemo regime but my onc is trying for funding so i just hope it comes through meanwhile starting xeloda…i wish you so much luck with next chemo keep your chin up believe me i know its so tough take care love rachelx
thanks Rachel (fairyqueen is a right cool name!)
It is so upsetting isn’t it - and so fast the spread- only started with few spots two months ago (been waiting to heal from surgery prior chemo) now its like a hand print in size! Funding? Cannot believe they would make you wait for funding. I’m sure it will get sorted, cannot imagine they would keep you hanging.
Thank you for your encouragement- I will PM you (think that’s message you) interestingly I noticed a old archive thread where someone did go onto the tablets you have been recommended and it did the trick for 6 months then surgery. Also looked at an American forum where some of them had been ‘managing’ it with different chemo drugs for years. So that gave me hope that if nothing else it can be ‘managed’ Although i’m hoping for more. Just been to church which lifted my chin up. Just need to get started on some therapy now. . .
you keep that chin up , i dont go to church yet pray every night more so for others than myself , my children and family etc, was widowed over 8 yrs ago so this is double whammy ,i am here for you just message anytime love and strength to you x
Hi amberlouise
welcome to the club noone wants to join 
but we will support you as best we can. Im sorry I missed your post earlier but I have been somewhat distracted by another thread (not to mention beyonce on glasto lol!)…
Your story sounds so similar to mine (I had skin mets which resisted surgery too) + so know what a complete nightmare it all is. I will pm you tmoro + tell you my experiences in terms of surgery, treatments etc. I’ve just fell into bed now so don’t want to wake myself up doing an essay style post!
What was your original diagnosis btw? Size of tumour, nodes etc, also, what chemo did you have? Just curious as skin mets are becoming so common. My surgeon had only operated on 4 ladies like me in 15yrs when I gad my op last year but he’s done another 3 since me in less than 12 months!?
Speak tomorrow, big hugs
love tina xx
thanks so much both. Rachel- this is a double whammy indeed. I think god does listen, I will add you to my prayer list at night too.
Tina(gingerbud- like this name as I am a ginger! thanks for cyber hugs- I feel them!!) Diagnosed March 2010 triple neg, 30 mm- one node affected micro mets. Lumpectomy and lymph node clearance. FEC and taxol 6 months then radio for 15 sessions.
But. . there was another primary in my breast they all missed! had clear margins on first surgery, clear 1 yr mammogram and all- only found due to skin mets above tumour site. Lump and breast was taken out this April, 20mm one node in breast implicated plus the skin mets above tumour.Now further skin mets of course. My frustration is waiting to start chemo- had to wait 6 wks to heal despite skin mets growing. Another 2/3 wks while they get 2/3rd opinions on best drug cocktail, but am due to start this Fri. There is no ‘sign’ of spread- but I have declined further scans- just not mentally ready. That hasn’t phased my oncologist whose happy to go ahead with treatment etc- but I do wonder if having scans might actually help them track and monitor. . . but then again they have got the skin mets to watch on drug effectiveness? so not sure that its that relevant at the mo.
Then there’s work. . and how to live ‘beyond’ the dreaded BC- was helped to see so many positive people doing normal things on this discussion- and having happy times (gingerbud with your holiday, sadieL with her exchange student) we are worth more than this- and your lives show this in measure, nobody with , or without BC knows there future, viewed in this way we are the same.
love a
x x
Aaaaaaaaggggggghhhhhh!!! No internet for 5 days!! Missing you all!! Just jumped on nhs internet on phone whilst in for chemo!!!
Amberlouise - Hi!!!. It is PANTS!! But life is still good after secondary diagnosis! Just different nd needs planning. Theatre, meals out, bbqs and … Take That tomorrow night!!! So pls enjoy smiling as much as you can!!
Hi to everyone else nd hope to be back soon.
Chemo number 12 today… sooooooooo slow!! 5 hrs nd counting…
Cyber hugs,
Sadie Xx Xx
Hi All
I hope able to join this thread as did not know it existed and have struggled to find it til now when a moderator helped me - thank you.
I have corresponded with a couple of you ; Sadie and Gingerbud so know we are all in similar horrible boat. I am going through the is chemo really the answer phase and should I be brave and look for other options ?
I was diag a year ago with secondary at start ( liver ) just after son born and despite great result with chemo ( EC) back v quick with skin recurrences after surgery and now on weekly paclitaxol. Finding v tiring and only had 6 of recommended 18 ? I have terrible sweats and hate hair coming out again ( only back a month or two ).
Sorry to moan on but had little boys birthday last week and has hit me more this week as bitter sweet as a year ago was happy and now just live day to day. Had other sons sports day today from nursery ( 3 in a few months). I find it really hard to not think about their future and that I may not be in it.
I too am a Christian and helps me but also gives me struggles for i wonder why some suffer so much. My first son died at 9 days old with cot death and we seem to have had a lot of suffering in the family as I am also step mum to two older kids who were jsut with their Dad when I met them. I think so unfair on our kids that find it hard that this is happening to so many of us.
Sorry to witter on - having a low time and find friends are not in contact as much as were at first ?
Love to you all and I feel for all of you
Hope 15
Hello Hope
Your post really saddened me, but I’m glad you have found us, this is a brilliant thread and I hope it will give you some comfort.
I don’t have children however I feel we share most of the same emotions, anxieties and frustrations.
I’m presently on my 4th type of chemo and have just passed my 2 year original diagnosis (recurrence 9 months ago) its relentless and some days are better than others.
I hope you find the support and strength that you need.
Claire x
Hi all!
Hugs to Claire and Hope and all on here.
Sarah (the Night Owl!) xx PS Hope you enjoyed Take That, Sadie.
Hi all hope y ok I had 3 chemo y day after a very long 12 hrs in hos and journey just waiting for se to kick ok at moe laura
Hope15
Im sorry that you are having such a rough ride of things, being diagnosed with secondary at diag must have been really hard- i’ve found adjusting in time is hard enough as it is.
Hope is your name, and more and more I’ve come to realise that although things feel bleak, and we have our dark days- there is hope for us. I don’t want to sound flippant, I realise our ‘non curable’ status feels daunting- but what i have come to realise through research and chatting and reading about people on here that there is Hope for us. There are so many new developments all the time- and it is worth remembering that things do and have changed in terms of treatment aimed at containing and maintaining quality and substantially lengthening time we have of life, in the meantime you never know what new treatments will be round the corner,- although balancing chemo and quality of life is really tricky isn’t it. It sounds like paciataxol is hard on you. There are many on hear who have multiple secondary, who seem top be maintaining well. I was reading one who’d been diagnosed with secondary tumours 7/8 years ago and is doing o.k.
Hope is easily knocked but also can be rekindled. Is there support round your area? What is your GP and consultant like? I went to Penny Brohn Centre in Jan and they are very good at looking at alternative lifestyle stuff if you say you are interested into looking into this- there near Bristol you can google them- its free for a short stay too!
love Amber x x
Hi all- I just started chemo todasy- any news yet Fairy queen re your treatment- hows things- been thinking about you. We seem so similar, as gingerbud. Thanks for you mails- 'ive tried to send one back but think it went wrong! I’ve chosen to go ahead with CT scan- scared but feeling bolder after chatting too you all.
Ginger bud- were you on carboplatin? what dose, do you know? how did you find it? I’m doing o.k for day 2- been able to go out this afternoon, but feeling rough now- though 'im so encouraged with your response to the drugs it has helped me look forward to hopefully positive news! Also my consultant said for a small amount of people chemo seems to work in a ‘curable way’ or certainly contains it very well for some, though not at all putting my hopes solely in this it gave me something to hope for.
I just hope they are giving you some positive support fairy queen- your CT scans have been so positive- they need to see if they can kick ass for you to get some control back. Hoping for us both. Hugs x x x x
hi amberlouise am glad your chemo is underway, i start mine next thurs and i have more scans on 12th it is scary as i have a sore area in upper stomach and am sure of probs in other breast so we will have to see, i am going on xeloda and waiting to hear if funding will go ahead for carboplatin but without sounding pitiful i never seem to get a break at the moment so will see what happens thankyou for asking !! love rachel x
fairy queen, i will keep thinking and hoping for you- lots of hugs. I had stomach pain for a while too, but seems too have gone now, it will be a boost to have that come back clear for you. I’m afraid for my CT scan coming too, think that will be similar time.
Keep on in there- I echo what I said to Hope 15 - It helps me to think along those lines when things look dark.
hugs and hope
x x x
Hi ladies
sorry I haven’t been on for a while I’ve been trying to wean off the forums a little after finding myself on the receiving end of some nastiness last wkend…
Anyway, been thinking of you all and hoping everyone is doing ok 
Not many posts on here lately so I hope you are all ok. Please post + let us all know how things are going.
Amberlouise I will definately pm you your story sounds so similar to mine with the skin mets. I’ve had surgery + radiotherapy but I guess you already had rads following your lumpectomy? Have you been offered surgery? It was an unpleasant op + I look like I’ve been bitten by a shark but I felt surgery was the best option 4me. Stay strong X
I’m feeling pretty good at the mo + trying not to worry about being off treatment. I’ve started taking a therapeutic dose of essiac tea this week I’ve read some great things about it. I’m also on a diet + have lost half a stone since Ibiza. Weight has been piling on and I was 3st heavier than wen I was diagnosed. Following slimmers world lots of fruit + veg so nice + healthy. Meeting with my boss this week about my return to work. Very nervous about going back (understatement) but it’s gota be done + it’s only a few days. Keep telling myself I’ve got through far worse + I’ll be fine. Just feel very vulnerable + self confidence is at lowest point but I’m sure I’ll be ok.
Right off to watch Scott + bailey my fave prog! Just wanted to check in + say hi
love to you all
tina xx
hi tina , i too am scott and bailey fan…glad you are well and back posting congrats on the weight loss …i start chemo on thurs and scans next tues but have pain in upper stomach area and am sure probs in other breast but have to wait on scan results, so will keep u all posted x
Hi all!
Tina, good to hear from you! I recall your run-ins on another thread - you def, are one feisty lady! I admire that! It is prob. a good idea to step back from here now and again. Glad too you are losing weight - I am a Slimming World veteran of 6 years or so and it can be excellent, in fact, I’m on it now - good luck. It must be fab. to be off chemo.for a while and I’m sure they won’t throw you in at the deep end in work. End of term - everything’s winding down anyway. I’m sure you will be fine!
Love to Amberlouise and fairyqueen too. Will be rooting for you with scan, Rachel. Also, Laura, Claire, Sadie, Jo, Hope 15 and my fellow BGGS pupil,Linda. I too have a scan next week ( Monday) - worrying (of course)about various reg.mets growing back, esp. with my arm getting bigger recently and some twinges of pain in area. Or any other nasty surprises. Still up, as usual, my son’s bedtimes no better esp. with heat. We’ve actually got a fully functional patio after almost 15 years of being in the house: sprucing it up now with pretty stuff and garden furniture. Looking forward to enjoying it this summer, esp. since the chickens have stopped invading our garden - destructive critters!
All the best, Sarah xxx Love too to anyone I’ve missed.