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chemo offered unsure whether to have it

16 REPLIES 16
Butterfly318
Member

Re: chemo offered unsure whether to have it

Morning Angel

 

When i said it may be up for discusssion.  As other have pointed out the usual practice is Herceptin only given with Chemo but some places will do just one Chemo to start and then continue with Herceptin (very rare). 

The general concensus from other forum users seems to be suggesting you have everything offered. 

 

Wishing you well with your treatment.  It is always tough when they give us a choice / offer discussion.

 

Take Care  Gilly x

Debs-
Member

Re: chemo offered unsure whether to have it

Hi angel, Am wishing you well and all the best,so many desisions for us all the time for us to make on this journey. Thank you for your answers and i hope you can decide soon as to what to do..xx

Kittyqueen
Member

Re: chemo offered unsure whether to have it

Hello Angel. I don't come on the forums as much now as I am2 years down the line. Your diagnosis is exactly like mine apart from my lump was 9mm. I was given no choice as to treatment as beingHer2+ and grade 3 even with no node involvement is classes as aggressive. I did 4 x EC chemo and 4 x Tax 19 rads and Herceptin for a year and am now on Tamoxifen. There are a lot if studies being done at the minute to try to reduce the aggressive chemo regimes for the small her2+ tumours so it may be worth asking your Onc about them. Wishing you all the best whatever you decide if you have any questions please feel free to pm me xx

KQ

angel77
Member

Re: chemo offered unsure whether to have it

Hi gilly. Can i ask what you mean when u said it could be up for discussion ? X
Butterfly318
Member

Re: chemo offered unsure whether to have it

Hiya Angel

 

I assume as Her 2+ it has been recommended that you have Herceptin, in which case my understanding is that it has to be administered with Chemo but that may be up for discussion depending on where you are receiving treatment.

 

Wishing you well in your decisions and further treatment.

 

Take Care   Gilly x

angel77
Member

Re: chemo offered unsure whether to have it

i had a 7mm lump which was taken out on 22nd of april ,it was her2 positive grade 3 stage 1 x
angel77
Member

Re: chemo offered unsure whether to have it

with chemo it will be an added 4% not just 4% on its own x i have the chart as my oncologist printed it for me x
Butterfly318
Member

Re: chemo offered unsure whether to have it

Evening Debs and Angel

 

Debs i am also a bit confused.  Like you i think it is not 4% chance but that the Chemo adds an additional 4% to the original %.  It all takes a lot of 'getting your head around'.

 

Angel is there an opportunity for you to go back and discuss again with Oncologist or Breast Care Nurse to get a clearer picture before you have to make the decision. 

 

Hope you are able to get all the information to help you make the right decision for you.

 

Take Care   Gilly x  

 

 

Debs-
Member

Re: chemo offered unsure whether to have it

Im 41, had 3 tumours and surrounding breast tissue had been invaded also 13 nodes and im her2pos.I had a mx, and am x3 into fec at mo ,start tax and heceptin in 2weeks.Will have x3tax then rads and hormone treatment 1oyrs.The heceptin for a year. I dont know all your circumstances but i find it hard that only 4% is your 10yr outcome !! Although i think my print out was for 5yrs,it still gave me higher. It was not 40% higher instead of 4? I know that sound patronising but im not meaning to be,i just cant get my head round it. xx
angel77
Member

Re: chemo offered unsure whether to have it

im 46 . it was higher with rads added on .. but with chemo and herceptin it was 4 % x
Debs-
Member

Re: chemo offered unsure whether to have it

But with heceptin and rads etc on top did it not make the overall percentage higher? May i ask what your age is?
angel77
Member

Re: chemo offered unsure whether to have it

hi debs he did a print out for me too and said with chemo it give me an extra 4% chance of beng here after 10 years x
Debs-
Member

Re: chemo offered unsure whether to have it

Hi Angel,my oncologist put a percentage chart in front of me based on my type of cancer and my age etc. It showed me how i would do with no treatment at all and then how i would do on chemo then rads then heceptin etc. for me personally my percentages were much higher and better the more treatment i had. Maybe you could ask for one of these print outs to help you make up your mind? Only you can make the decision,hope you find your answers,all the best.

Donnaandfamily
Member

Re: chemo offered unsure whether to have it

Hi Angel

sorry to hear of your diagnosis

 

They would not offer the chemo if they felt it was not beneficial. Like Lucy said the herceptin is usually only given if you have chemo

 

Every ones journey is different.....the worse part for me is the hair loss; but I bought 2 wigs identical to my hair (highlights and all) and wore it before I lost my hair to see peoples reaction.....which was "No idea" I now feel confident wearing my wig.

 

We are given excellent antisickness medication  and any side effects are well controlled....... the first 6 days are when you feel most groggy.....but after that you start to feel better......

 

I would personally take the chemo to ensure I had done everything to achieve a cure. Your hair will grow back........ You could try the cold cap in an attempt to maintain your hair

I hope you make the right choice for you xxx

Best wishes Donna

 

lucy12
Member

Re: chemo offered unsure whether to have it

Hi Angel

 

I'm so sorry your results weren't what you were hoping for. I turned down chemo based on the very small percentage increase it gave me - I was very borderline as to whether I would be offered it or not. I went on to have 20 sessions of radio and now on tamoxifen.

 

My understanding is that you must be Her2 + as you will be having Herceptin? Herceptin is only licensed to be given in conjuction with chemo which is a bit daft as you can be Her2+ without really needing the chemo bit of the treatment. While I was waiting for my Her2 result, my BCN told me that IF it came back positive (which it didn't), it was very important that I have the herceptin and that they can often get round the system by giving it with a single dose of chemo and then discontinuing the chemo but carry on with the herceptin - it seems odd but she said that's how the system works! I don't know if this is the same scenario for you but worth asking. Are they only giving you chemo because of the herceptin or would they be offering it to you even if you were Her2-?

 

But if you do decide to have chemo, you WILL get through it. You may find with that particular mix of drugs, you don't lose all of your hair - many women on the fec-T chemo say their hair starts growing back once they start the taxotere so this is also something you can ask about. You may also be one of the lucky people who don't feel ill, the only side effect my best friend had from chemo was hair loss - she was never once sick or ill and worked full time throughout... and her hair grew back.

 

It's a HUGE decision and ultimately one that only you can make (I didn't even tell my family I was offered chemo as I wanted it to be MY decision and for them not to 'guilt trip' me into it!). Speak to as many people as you can (the helpline here, your BCN, ask for another appointment with your onc for more information)

 

Wishing you all the very best for your journey

 

Lu xx

Lucy_BCC
Member

Re: chemo offered unsure whether to have it

Hi angel77

Whilst you await support here please feel free to call our helpliners to talk your concerns through with one of our team, they are on hand with practical and emotional support for you right now, lines open weekdays 9-5 and Sat 10-2 on 0808 800 6000

Take care
Lucy BCC

angel77
Member

chemo offered unsure whether to have it

hi all. i got offered chemo and im unsure whether to go with it because of the hair loss side and the fact i read it makes u feel poorly .. has anybody elsed been offered chemo and turned it down ? if so what other treatment are u having .. i was told 4 sessions of chemo with hercepin injections every 3 weeks and 6 weeks of radiotheraphy and 5 years of tamoxifen x please give me some advice x