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chemo or not?

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Re: chemo or not?

Hi Di

Sounds as though you've just about made up your mind... just thought I'd share my experience. I was diagnosed nearly 6 yrs ago, 7mm, grade 2, no nodes. I didn't have chemotherapy or any other treatment. I really thought the cancer had gone completely.

Here I am all this time on with a recurrence in my lymph nodes (quite a serious one with spread to soft tissue). This time I'm having the full works.

I was given stats for benefits: chemotherapy added less than 1% to my survival stats which were already 94%. So if I'd had it, it probably woudln't have made any difference. I don't regret my decision but there is always the teeny tiny chance if I'd had the treatment first time, I wouldn't be back here now.

All the best for your decision. It isn't easy but it doesn't last forever.

Jane

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Re: chemo or not?

Hi Dib
Like you I work in a hospital and have been told i can't work between chemo cycles no matter how good i feel due to infection risk, onc said if i picked up infections them each cycle would be delayed and what should take 5 months could take upto 12. He also gave me the printout showing the increased percentage of it not coming back by having chemo and then rads as well. It went up by over 30% so that made it an easy decision for me. Not sure if they routinely give you this figure or if you have to ask, I kept asking questions so in the end he showed me the percentages and my scoring. I am having 6 cycles of fec but the lower dose of 75 so not all of my hair has fallen out yet. Cold cap doesn't seem to be an option at my hospital but i have ssen some posts which say you can retain upto 70% of your hair if on the lower dose and using a cold cap. I need to wear a hat when going out as very thin on top so feel the cold but this time of year you look ok and also at night as otherwise my cold head wakes me up but with a hat on there is still some hair showing so it looks ok. Mainly it helps to try and look not too far ahead and just take each cycle as it comes. i have used the good days to get all those things done i never have time for.... moved house 5 years ago and just got round to altering a set of curtains. Take all help offered and there is always someone on here who understands exactly what you are going through!
Ali.
x

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Re: chemo or not?

LOL, see this is what they mean by chemo brain....I was quite switched on before all this...!!
My chemo unit gave me an information chart with all the symptoms to look out for infection wise and a the general do's and don't, always worthwhile to keep an eye on your temperature!
Unfortunately, most of my hair went despite the cold cap, but I still used it as paxman said it can help with regrowth and it's been doing well since my last tax on the 8th July. I also had a wig and lots of hats etc. http://www.boldbeanies.co.uk/ is a good site, so is http://www.hats4heads.co.uk/about.html and
http://www.suburbanturban.co.uk/ had my wig from hairware http://www.hairware.com/home.cfm
also http://www.bohemia-fashions.co.uk/.
Always made an effort to look nice even when the lashes/brown went and everyone on the school run always commented how nice I looked.
Good Luck. Enjoy your shopping! Tinaxxx

Re: chemo or not?

Hi Tina,the infection i mentioned was in regards to returning to work during treatment,nothing to do with the cold cap.
Did the cap help to keep your hair?

Re: chemo or not?

Hi ladies,
Its me again,hogging the site,i know!
Ive just spoken to one of the specialists who explained that while rads clears up any loose cancer cells around the breast and armpit area chemo will actually kill off any stray cancer cells in the whole body,so I suppose that makes the decision a little easier being as my main concern is `will it come back elsewhere`.So now I need to know the best places to get the wigs and scarves and bandanas etc!time to start planning and get positive about it.
Off to the shops now,back soon,
Bye for now,
Chins up,
Di.xx

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Re: chemo or not?

I used the cold cap, paxman, they have a very good website. Never heard a link between cold cap and infection before! It's like sticking your head in a freezer.... It sits tight on your head and is frozen to about -6 degrees. You might like to take a warm Cardigan as it can make you feel cold. Good luck.

Re: chemo or not?

hi Debs,
Your positive attitude towards hair loss is brill,thats my greatest fear,I dont wanna go bald!has anyone tried the cold cap during chemo?I did ask about working during treatment but im an auxillary at the hospital where my treatment is(on a heart ward) so its not really a good idea because of the increased chances of infection.
And Belinda,have you reached a decision yet? Im still not 100% sure,i keep changing my mind,specially as both my mum and my auntie both had chemo and yet it still came back and they both died from secondary cancers.Am I gonna go thru all this for nothing? I didnt sleep at all last night,kept changing my mind,am I still gonna enjoy a gin and tonic?,can I drive after chemo? I have an hours drive round trip to the hospital and dont want to rely on others.wish someone would take this decision from me.Most of the time i feel positive and then I have a down moment and think no,i cant do it.Think Im gonna ring the cancercare specialist on this website and have a chat.
Take care all,
luv Di.xx

Re: chemo or not?

Hi Di
I'm glad you have managed to make your decision and just wanted to say that chemo isn't all bad. Side effects affect people in different ways and if you're lucky like me (so far)they will be minimal. I don't know what work you do but I work in an office and I have managed to keep working apart from the odd few days after treatment.
Hair loss is a personal thing too. I loved my hair before but I'm also liking the new looks I can create with wigs and scarves. People keep telling me I look younger! I think with a bit of make up you can still look glamorous and feminine even with a bald head.
Good luck with your treatment anyway and I love your daughters tattoo. I'm thinking of getting a ribbon tattoo myself when this is all over.
Debs
x

Guest user
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Re: chemo or not?

Hi Dib, I'm in a similar position to you in that the decision is in my hands to whether or not to have chemo, mine was grade 2, had a lumpectomy lymph biopsy, which came back clear, it was measured on a scale of 2.1 -3.0 and I am a 2.2 so in the grey area, some of the oncs have said yes and some no, I just feel in a spin really, 90% chance of it not returning without chemo, 93 - 95% with, I am 48 which is why they have offered it to me, so pleased you have almost made your mind up, sure you feel more positive for doing this, I am hoping I will too !!! take care,

Belinda xx

Re: chemo or not?

Hi Ladies,
Been to see oncologist,and she said that having chemo would reduce my chances of a reoccurrance by 10%,so im almost decided that I will have the chemo.If I dont and it comes back I will kick myself,if I do have it and it still comes back,at least I have given myself every chance,no regrets.
Steph,It must have been very difficult for you with being pregnant aswell,you have my utmost respect and best wishes for your future.
There is also the added financial strain of having 18 wks of treatment so no work for about 6 mths,any tips????
Good luck and my very best wishes to you all,
Di.xx

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Re: chemo or not?

Hi Ladies

Im 33 and 25 weeks pregnant i found i had bc in June grade 3!!! I had lumpectomy and all nodes taken away 1 node was infected.. They did say the choice of chemo was mine but with being young they would advice i did go for it!!! Im havin 8 chemo 4x EC and 4xTAX then 20 sessions of Rad, so far ive had 2 sessions of EC!!!!! Im getting scanned every 2/3 weeks for baby to check on growth so far so good!
But back to the point of being my choice i found it such a hard choice with being pregnant which they say it rare and just the word chemo is horrid but with havin 2 other children and only being 32 at time i felt i needed to do any thing to stop it ever coming back!!???!! No family history of BC it took us all by surprise!

Take care Steph x

Re: chemo or not?

thanx ladies,i really appreciate your thoughts and your own experiences,hopefully i will get the info i need tomorrow to make the decision.it would be so much easier if the `expert` said you do need chemo or you dont,rather than leave the decision to me.will get back to you tomorrow,thanx again and my best wishes.xxx
Di.

Re: chemo or not?

Hi Dib
I too was told that it was my choice whether to have chemo or not, which I found really unhelpful - they're supposed to be the experts! I was helped in making a decision by talking things over with the BC nurses on the helpline at BCC. They pointed out some aspects that I hadn't considered and that gave me some questions to ask the oncologist. In my case I decided against it because I felt that the oncologist was being unduly conservative and the potential benefit to me was very small. So instead of chemo I'm taking Tamoxifen and Zoladex simultaneously, which can both have their own set of side effects but so far so good. (I later sought the opinion of a 2nd oncologist who said she wouldn't even have bothered with the Zoladex, so that shows how widely the experts can differ!)
I wish you strength and good fortune in making your decision, I don't envy you, having being there myself.
Good luck,
Sarah x

Guest user
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Re: chemo or not?

Hi
My cancer was grade 3 and was told I could chose whether to have chemo or not. I am 55, I have 3 wonderful children, 3 and soon to be 4 exceptional grandkids and a magnificent OH. I have too much to live for so anything I can throw at the bu**er I have, 6 FEC-T and 25 rads later, no regrets. I am now halfway through my year of herceptin. The chemo is very do-able and I do not want to look back later and say "what if?".

Marian

Re: chemo or not?

thanx darcy,
You seem to be similar in diagnosis to myself,so its interesting you were advised to have chemo at a young age.I`m 49 so still considered youngish as far as BC is concerned! I suppose anything which helps to prevent a recurrence of this rotten disease is worth considering.I just hate the thought of losing my hair(although its usually a mess!).I will report back tomorrow when ive seen oncologist.Best wishes to fellow sufferers.xx
Di.
ps,my profile pic is a pink ribbon tattoo that my daughter had done yesterday as a way of giving support to us all,cool innit!!!

Guest user
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Re: chemo or not?

hi

Haven't posted in a while as soooo fed up with this chemo c**p!

I also had surgery and clear nodes, grade 2 not 3 so good news or so I thought! Because of my age (34) they wanted to give me 6 sessions of chem (FEC) the one thing i didn't want!!!

So what to do? I'm maried with two children, I would of done anything to be okay for them but we put so much trust in doctors and there was all these percentages thrown at me,how it was for the best... soooo i went for it.

I had my last chemo monday 20th september 2010 and can't believe I made it, It's been hard,I had side effects, I have hardly any hair left and i've put on weight! but i'm here i've given it my best shot (rads still to go and tablets for 5 years) and i'm off to spain on saturday life does goes on!

hope this helps x

Re: chemo or not?

Hi dib and welcome to the BCC forums where i am sure you will receive lots of valuable support and shared experiences from your fellow users.

In addition, please feel free to call our helpline to talk through your concerns on 0808 800 6000, weekdays 9-5 and Sat 9-2.

We have published a resource pack for those newly diagnosed which you may find helpful, you can read more about it and order a copy via this link:

http://www.breastcancercare.org.uk/healthcare-professionals/publications/quick-order-list/*/changeTe...

Take care
Lucy

chemo or not?

hi,i am new to this site but am very impressed and touched by the support you give to each other.I would appreciate some advice and your thoughts on my problem.
I had a lumpectomy and lymph nodes removed 3 wks ago.I went for the results yesterday and most were feally good,the tumour was small,they got it all,lymph nodes were clear-all excellent so far.then they said it was a grade 3 so I may need chemo after all( i was hoping to avoid chemo!!)They said it was my decision wether to have chemo or just go with rads.I do have a family history of breast cancer,my mum died 20 yrs ago,aged 51after it progressed to her brain and my aunt died 10yrs ago,aged 42 after developing liver cancer.
I have an appointment with oncologist tomorrow but if the decision is still mine after getting all the info I dont know what to do.I am hoping to return to work next week(if i have rads it wont start for another 6 wks),I work as an auxillary in a heart ward. please help!!!!