Got to be with them I think I can just see their little feet in them ! :o)

I saw my breast care nurse today and talked to her about the chances of “it” coming back. She agreed with my theory which is that once chemo is finished and what is left of the tumour removed (and the rads and 5 years tamoxifen) I will have exactly the same chance of getting cancer again as anyone else.

I am not going to live the rest of my life worrying about how I am going to end my days. I intend to spend the rest of my days making the most of what I have and enjoying being myself.

caron=caron i still have chemo SE some similar to you and i also still have no eyebrows and less lashes than before
i finished chemo april 2010

"once chemo is finished and what is left of the tumour removed (and the rads and 5 years tamoxifen) I will have exactly the same chance of getting cancer again as anyone else. "

I’ve been told that if I’m still here after 2 years post-op then I should be home and dry and can have my recon then. If my particular BC is going to come back, I’ve been told that it will do so very quickly. One month and counting, 23 to go - still NED…fingers crossed!

“I intend to spend the rest of my days making the most of what I have and enjoying being myself”

Aye, me too. However, I presumed I would have at least what my mother had (84 and a smoker with bad smoking-related illnesses). I don’t smoke and I’m a hell of a lot more outdoorsy than she was.
But now I’m not so sure but trying to keep that monkey at the back of my mind.

Lincs_Lady yes Ive got alot less lashes as well,I have about 5 under arm hairs I could name them ! lol
You must be near me I’m in Grimsby.
I finished chemo May 2009 and I’m still the same,I recently went on holiday went in a lift with 2 young men they started sniggering behind my back I knew they were laughing at me,when I got to my room I took a pic of the back of my head and yes it looks bald,I was really upset I was crying the rest of the day,and this was only in August so not long ago,and I still look bald…

Ninja you have only just had your surgery then haven’t you?
Why did they say your particular Cancer would (hope not) come back quickly if it did come back?
And I don’t think it’s invasive cancer that can not be cured because all invasive means is it’s capable of spreading to other parts,you might mean secondary that can’t be cured.

Ninja have you had your histology report yet? just want to give you lot hope here,all cancer starts off as pre-cancerous cells doesn’t it,then turns to cancerous well in some cases “the chemotherapy can alter the cancer and make it regress that is changing it back into Pre-cancerous cells” as in with my case and also my friend who got dx 6 months after me also lives in Grimsby,her’s also regressed,we both had the same treatment that was 4X EC then 4X Tax.
She wasnt the same as me in that I was her2+ and she was hormone+
so keep your chins up girls xxxxxxxxxxx

I think that a lot of people,unless theyve had a close relative go through it, havent got a clue about cancer and its treatment, and may have some ideas, but theyll probably be outdated.All they probably do know is that they dont want it themselves! I was like that myself once! You dont know the terminology,having cancer is a steep learning curve! I do think that we are in a bit of a cleft stick in that we want to be positive and show people that cancer treatment is nothing to be afraid of, but this means that the side effects are minimised even by the literature thats doled out to us. For instance when I look up peripheral neuropathy (got it in my toes) after cancer treatment it blithely says it will go away in about 12 months, so why have I got it two and a half years later, with no sign of it diminishing? I dont want doom and gloom, just some realism that its a harsh treatment and were not all going to bounce back “shiny and new” afterwards!


You are so so right…
I haven’t a clue what peripheral neuropathy is ! I just looked it say’s damage to nerves?
Yes we are still learning all the time,I didn’t know anything at all,ziltch,you learn along the way,some people want to know others don’t want to know,maybe thinking the knowledge will somehow hurt them more? or afraid of what they find out.
Even though I am not having any treatment now,I am still every day living the cancer nightmare,living with what it’s done to me,how it’s changed me,I don’t mean the mastectomy I mean how tired I am day in day out how if I do anything I’m worn out,and like other’s say people who know me think I’m back to my former self,well I’m not and far from it.
I will say I was extremly bad on chemo and even at the start of this year my nails were still lifting,I lost them at least 4/5 times, I showed my onc he said “were still finding out what the long term side effects are” because the chemotherapy is updated all the time then someone has to be first to try it,and it’s needed so we’re the first (sort of).
It will be a case of not many have peripheral neuropathy but you have it will be deemed under RARE SE! that CAN but WONT happen to you,like me I had a stroke because of chemotherapy again another rare SE but to some it’s real and does happen.
Well I’m certainly not bouncing lol xxx

Caron Caron (So good they named you twice?). Thanks for your reply. Trust me to say peripheral neuropathy. In my case its damage to the nerves in my feet, but can be hands. Its supposed to show up in the most distant parts of a person. Im really glad it wasnt my hands because I draw and paint and the idea of not being able to do that is awful. So, if they really dont know the long term consequences of treatment why not just say so, instead of making people like me feel they are "rare". When I mention the numbness in my feet to my onc I know jolly well that its not rare, and pretty much par for the course because she doesnt seem surprised at all. Its just "wait and see" as to when it wears off.Im living in the USA, but buying good old Clarks shoes as they have quite thick soles which I need for support.
Sorry to hear you had a stroke. I hope you are recovering (recovered?) from that,

Peripheral neuropathy is a common SE on the Taxanes.
I had it quite badly (completely numb on soles of feet, and right up to my knees on outer side of leg) but my last Tax was on 25 August and the PN has all gone now.

Caron - I said that my particular cancer would come back quickly (if it was going to) because that’s what the surgeon and Oncy both said after looking at the cells taken out. I have a very aggressive cancer. They hope that it will be OK but I cannot have a recon for 2 years so that they can find recurrences quickly and deal with them.

Caron: “I don’t think it’s invasive cancer that can not be cured because all invasive means is it’s capable of spreading to other parts,you might mean secondary that can’t be cured.”

As I said, my comment is designed as a response to “friends” who say “you’ve finished your chemo, you’re cured now, come jogging, don’t be miserable” or somesuch…folk who just don’t understand that cancer treatment doesn’t end with chemo and that sufferers don’t leap up from their beds and start to feel energetic and blissfully happy immediately.


So agree with your comments. I have stage IV and my friends think I’m being negative when I tell them its not going to go away or that I’ll be on chemo for the rest of my (probably shortened) life.

The women they know in our village have all had a stage 1 or 2 cancer, mastectomy and recon. They keep asking me when I will be having mine. Sometimes I get so fed up repeating myself and think I should be getting a t-shirt printed up with “Yes I’ve still got it and no, it’s not going to go away” :wink:

Laurie x

Aye, Laurie. All one of my neighbours keeps saying is how wonderful it all is because I’ll get a free boob job and the other will be tweaked so I’ll end up with marvellous t*ts. I know she’s trying to cheer me up but it isn’t working on that front.

The surgeon said that they won’t consider doing any recon work on me for years as he wants to keep a flat playing field to look for recurrences. So all this talk of “boob jobs”, well I find it, quite frankly, offensive. An LD or DIEP flap recon is a major operation and NOTHING like having a quick implant inserted.

That was the worst thing of all for me, I think, waking up with only one boob; it’s devastating.

It’s a tricky one Ninja.
The idea of being lopsided I had difficulty with as well, so I was very pleased that I was offered (and had) an immediate recon. I’ve since had to have rads to the chest wall because of the risk of reccurrance and so now I’ve got the lurking fear of it coming back there and not being spotted because of the recon…

None of the recon options are easy - and even when they end up looking good, they will never feel the same - inside or out.

Aye, just the antithesis of a “boob job” where you keep your own nipple etc etc.

Anyway, if I’m “cured”, slice me like a nice ham, willya?

hi girls… such a good thread. i’m 2 and half years post diagnosed and i got so angry when people used to say ‘so your cured then’… they want to try living with the treat of this shit coming back and biting you on your ass. I had grade 3 VI… had all the works and am now waiting for 2nd recon op… have MRI results on wed for headaches which have improved since i changed tablets… but we have to go through the crap of tests and results dont we… but thats ok because we’re cured now anyway!! sorry im ranting… just glad im not the onlyone who thinks like this.

good luck to everyone xxx

mimsy no I’m not named twice haha they had a hic-cup with this site when they updated it,and I couldn’t log on so had to make a new name etc but caron was gone or wasn’t long enough blah blah blah…
Yes I’m recovered ty from the stroke,I didn’t know it was at the time,I only found out later,I went blind in one eye at the time,it was very scary,as I’d been having alot of headaches as well but now know that was because of stress being worried etc,I just have to have meds to try to reduce the risk of another one,I found out there’s quite a few women who have them related to chemo,don’t know why?

Ninja I know it’s bob but least they are keeping a close eye on you,and I really hope it’s over for you and it doesn’t even consider coming back.

Lauren my neighbour said to me last week “i’d of thought u’d be over all that by now”
yes well so would I but Im not so nerrpoo! lol
I had recon and 2 further ops and I can tell u I have not got great t*ts! a matching pair would be nice to start with !
have a nice bommy night x

Hollymeg really good wishes to you for your test results xx

No bommy night for me, Im caught halfway between Halloween and Thanksgiving. We mostly have fireworks on 4th July. Im living in the USA and got diagnosed and had all my treatment here.I miss all the fireworks on 5th November.We are, however, moving back to the UK next year, and since I started doing the heavy work, have found that my body takes a lot longer to recover afterwards.I started a thread about it, and then found the arimidex/anastrozole thread about aches and pains and found I wasnt alone. The good thing for me about this site is that Ive been able to check that the treatment I get here is the same as Id have got at home. They all seem to adhere to the same “gold standard” for bc treatment.Only difference being the results come through more or less immediately of mammograms, but I guess that relies on there being someone to instantly read them, on hand. The whole system is based on private insurance (no NHS) so you get a private standard of care, but its humbling to think if you havent got insurance as many havent, the consequences are dire! A great improvement in the UK is that cancer drugs are now free. We have to pay a co-pay here, a small percentage of the cost, so wahey UK for having the NHS and free cancer drugs!

Ohh Mimsy I didn’t know you were in the US of A (like how I put that lol).
I know it is hard to read some post’s of ladies in the US and don’t have insurance and KNOW they have found a lump and they KNOW it is BC it is terrible,I’m not good at politics but maybe USA should say for cancer be free for all,just say for things that could finish you off so to speak?
I know that if I were living there I wouldn’t have had the insurance.
I just feel sorry for the ladies who have taken the risk,I think you think “it will never happen to me” but unfortuatley all I know are younger women with breast cancer.

I don’t know about all the aches and pain thread I will have to look that one up,my back was bad anyway but now my back and both my hips are bad now.
As anybody noticed this as well, you know when your on taxotere and your legs don’t work are heavy and are wobbly? well every time I have been laid down and get up my legs are wobbly for the first few second’s I wonder if anyone else has got this?

I would say, while the majority of people survive breast cancer, no doctor of any repute would ever use the cured word, because there are no guarantees. There is no guarantee that treatment will work, and no guarantee that cancer will not come back.
I appreciate that it is sometimes easier to go along with those who use the cured word, but personally, I always try to “educate” these people, because:
(1) I feel a cure for this appalling disease will only be found when society as a whole demands it, and is prepared to fund research - and that wont happen if there is complacency and trivialisation.
(2) While the cure word might be a comfort to those who have completed their treatment and want to get on with their lives, it is potentially a cruel deception that can be devastating for those who later have to come to terms with a recurrence.
Anyway, lecture over - just my point of view.