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RE: ANYONE REFUSED CHEMO?

11 REPLIES 11
jantrigano
Member

Re: RE: ANYONE REFUSED CHEMO?

Hi, I have been to see my Oncologist this week. I had a WLE with node clearance back in March, and results came back with clear margins but 2 lymph nodes involved.
I have been recommended chemo but the stats I have been given is 76% survival for 10 years plus, which increases to 82% with Hormone therapy and to 84% with Chemo and Hormone.
After much thought and soul searching I have today rung the hospital and declined the Chemo as 2% seems such a little increase for all the side effects etc. I am going back again next week to sign the consent forms for Radiotherapy and 5 years Hormone tablets, not sure which yet as depends on blood test results. Do not know if I am pre or post menapausal as I had a hysterectomy 18 years ago.
I feel this is the right decision for me but only time will tell.
I am trying to feel positive, how do you all feel about your decisions.
Good Luck to us all. Love and Best Wishes Janet xx

poddle
Member

Re: RE: ANYONE REFUSED CHEMO?

Yes, like lolly73 I'm on six monthly appointments with both surgeon and oncologist, staggered so I see one of them every three months - although if I'm ever worried I just make an appointment (that hasn't happened. )

I do have a great deal of faith in my oncologist, which helped me. My particular postcode lottery means that I've ended up with a very eminent one whose speciality is pre-menopausal women. She was only adamant over two things. Firstly, that hormonal therapy (ie Tamoxifen) had to be part of my treatment and that I shouldn't feel rushed into making a decision either to have, or not to have chemotherapy. I had regular meetings until I felt happy with my choice. (And she was satisfied with it - it was made very clear to me that I wasn't going to be given a choice over anything she considered vital).

But every case of breast cancer is different, I've found and comparisons often aren't helpful. I'm not sure how hormone-based Wendy Richard's cancer was. And adjuvant online is not foolproof - it doesn't yet include statistics on survival with Zoladex, although there was a big study a couple of years ago where it had the same survival statistics as CMF chemotherapy.

Initially, I thought I was taking the easy way out by opting for Zoladex and Tamoxifen, but found the first few months quite horrendous - migraines, exhaustion, insomnia. In fact, I thought very seriously about swapping it for four months of chemotherapy (I know of several women who've found FEC really quite easy) since - on paper - it gave the same statistical benefit, only to realise that, as far as Tamoxifen was concerned, my oncologist as adamant that I should take it. I hope that's been of some help - I remember being both furious and miserable that ultimately only I could make the decision.

josyemarie
Member

Re: RE: ANYONE REFUSED CHEMO?

Hi Marble,Given the chance I'd go for the chemo,Although my friend here in the west of Ireland had a similar dx 3yrs ago.She wasn't offered chemo - just tamoxifen for 5yrs and is quite happy with her treatment. My hair was waistlength when I was told refusing chemo was not an option,I cut it to mid back and used the cold cap.I kept a good,thick head of hair through 4xFEC, sadly the lot went with the 4xTaxol but that was a different story! With most adjuvant chemos if you use the coldcap theres a good chance you'll keep your hair.... Good luck with whatever decision you make.x

rhapsodyangel
Member

Re: RE: ANYONE REFUSED CHEMO?

Marble - unfortunatly if cancer comes back it often means it has actually spread to other organs and once that happens it is termed incurable... They can now help people with secondaries with various chemo treatments which have kept people on here alive for several years but it is ultimatly going to be terminal...

I had no choice about having chemo as i have a really rare aggressive type of breast cancer that would have certainly killed me without treatment...

As other people have said at the end of the day only you can decide whether to have chemo or not - but i know if i had had the choice i would still have gone for every treatment available.

Good luck with your tough decision...

Theresa

lolly73
Member

Re: RE: ANYONE REFUSED CHEMO?

Hi Marble

I am seen by onc every 6 months and surgeon every 6 months, therefore seeing someone every 3 months. I have mammogram and ultrasound once a year.

I have been quite lucky with the hormone treatments - just a few hot flushes and mood swings.

At least if your children are grown up it helps. Mine were 1 and 4 at dx and i dont have much family to help, therefore chemo for me would have been very hard.

KatherineM
Member

Re: RE: ANYONE REFUSED CHEMO?

Marble - they can give you these figures if you want them - they come from a site called adjuvant on line which is for medical professionals but you can look at them, probably you should discuss with your oncoloogist and ask for these specific figures,

you can wear the cold cap in about half of the hospitals...you can keep your hair with this - mine thinned alot but I kept it.

The worry is not really that it will recur in the breast - that it will come back as secondary cancer in liver, lungs etc... for a certain group of people chemo stops that.

cathyx

marble1966
Member

Re: RE: ANYONE REFUSED CHEMO?

thank you all for your replies.

Poodle & Lolly, what is your treatment plan. Do you still see
the onc and have scans or mammograms? Did they explain if you
get a reoccurance, would it come back worse than the 1st time? Did you have any side effects from either of those hormone treatments? I am not worried about menopausal symptons as I have 3 grown up children.

My hormone involvement was 7/8 for both er & pr. Her 2 = neg. No
lymphvascular invasion involved.

It would be do nice if they could also give you 10 years figures for
those people who choose not to go with the chemo.

My family are all bscking the chemo and have said exactly the same as
you (doing fec) that at least you have given it your best shot and gone with best recommended treatment. (my mum keeps referring to Wendy Richards, who turned chemo down and it came back, and we all
know what eventually happened. I have also read blogs and forums from others who turned chemo down and regretted it.

I have another appointment with onc next wed, and hopefully will see
a chemo nurse at the same time to talk through any doubts/concerns as well.

any other advice, please keep posting. this site has been so helpful. good luck to you all with whatever path everyone has choosen to go down. It's all so bloody stressful!

lolly73
Member

Re: RE: ANYONE REFUSED CHEMO?

Hi Marble

I was 34 when dx Feb 08 with 2.1cm grade 3 which was 8/8 hormone positive, also her2 positive, no spread.

I had lumpectomy and snb with 9 nodes removed, and 4wks rads. I have been on zoladex and tamoxifen for a year now.

I was told that I didnt need chemo as I was so hormone positive and the zoladex and tamoxifen would do the same thing as chemo. I was also told by my onc that 1% of people die from the chemo alone!!

I was given the option of having chemo and herceptin which would have upped my chances of non reccurance from 89% to 92%. My onc advised that it was not really worth all the side effect of the chemo/herceptin, so I chose not to have it.

Am now booked in to have ovaries removed soon instead of another year zoladex.

All the best with your decision.

Elsie
Member

Re: RE: ANYONE REFUSED CHEMO?

Hi Marble,
Just stumbled on this just now and thought it was like reading about myself!
I was dx 10th Oct, 14mm lump grade 3 no lymph involvement, 2 excisions to get clear margin, and because of my age (50) was offered the choice of chemo or not, with identical percentages. We wanted to get as much info as poss, to make informed decision and cons onc was bril, giving as much time and answering phone calls as necessary.......to cut a long story short, I am now onto 5th of 6x FEC and so far surviving with few side effects....still have my hair thanks to cold cap, and still feel that it was the right decision for me, including the absolute backing of my family, as at least further down the line if I was unfortunate enough to have a recurrence then I could say I had given it my best shot, and not wonder "what if?"
In the end of the day YOU have to live with whatever decision is best for you, and only you can make that decision. Wishing you lots of luck whichever road you choose to go down.
Lyn x

Ellie42
Member

Re: RE: ANYONE REFUSED CHEMO?

Hi Marble - I was diagnosed 1 April. Had lumpectomy and sentinel node biopsy on 8 April. Went for post-op consultation this week, tumour was 22mm and stage 3. Nodes clear. They're highly recommending chemo for me to give me the best outcome. The stats for me gave me an 89% chance of survival in 10 years. Not looking forward to treatment to say the least and my hair has been the one thing I've been proud of and have always looked after in all these years - my crowning glory. The thought of losing it terrifies me. BUT I will go through this and see it as a necessary evil to come out the other side and by Christmas we'll be well on the road to recovery. Without chemo my stats were 82%, so it gives me an additional 7% positive outcome which my consultant said would be difficult not to refuse. Currently awaiting appointment with Onc to discuss next steps. Take care. Ellie x

poddle
Member

Re: RE: ANYONE REFUSED CHEMO?

I was in a similar position 18 months ago. My tumour was larger (3 cm) but stage 2 and my nodes were clear. I found having to make the decision over chemotherapy fairly agonising. I was 42 when I was diagnosed.

Could you ask for more time to think about it? I asked my oncologist if there was any urgency in starting and she readily agreed that there wasn't so I started on Tamoxifen and Zoladex (I was always going to have Zoladex because there's anecdotal evidence that it protects the ovaries during chemotherapy). Chemotherapy felt like a big step and having more time to think about it was incredibly useful.

You could also ask how hormone sensitive your tumour was (mine scored 8/8) and whether there was any sign of lymphovascular invasion (I didn't) - both things impact on whether chemotherapy is a good idea.

I asked for advice and not only from medics (my accountant felt that the cost of chemotherapy (almost certain menopause) didn't match the small increase in survival rates - which was actually a useful way of looking at it (for me).

I eventually decided to stay on Tamoxifen and Zoladex but it is a really personal decision - everybody's case is different. The thing I'm really grateful for is that I had the time to really think about it.

marble1966
Member

RE: ANYONE REFUSED CHEMO?

Hi All,

Had 1st appt with onc on Wednesday. My diagnosis is Inv Ductal,
horm pos, size under 1cm, grade 3, no spread to nodes. Age 43. I have had two lumpectomy ops as 1st had one margin very close to edge of margin (0.2mm). Anyway, 2nd lot of results came back completely
clear, with no spread, and no malignancy involved. He has also
given me these "stats" for non recurrance. I have 85.6% of non recurrence if I have no treatment. If I have hormone treatment,
this increases by another 4%, to bring it up to 90% non recurrence, or if I have chemo and hormone treatment, it is an extra 7.7%, bringing it up to 93%. He wants to put me on FEC x 6, but I cant unerstand what for, if I am all clear and having chemo only gives
me an extra 3%. My main reason for doubt is I have been growing
my hair for the last 2 yrs (from cropped short) and if the cancer hasn't gone anywere, why put myself through all the bad experience
of the side effects. My ONC has told me that for people in my case
with a very low risk factor, they do overtreatment and are over precautioud because of the young age. He has offered an alternative
way if I feel strongly about having the chemo, which is Zolarex and
Tamoxifen, and rads. He has given me a week to think about it and I am going back Wed coming. Any help or advice much appreciated as I am very undecided at the moment