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HELP with a decision re Chemo or not

17 REPLIES 17
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Re: HELP with a decision re Chemo or not

Eeeek! Hi ladies,, what are your thoughts on my case please? It's such a tough decision!

Mines Inv Lob, 11 mm stage 2, I'm 45, I had a micro-met in 1 out of 8 nodes so have two NHS "Predict" tests.

My results for benefit come out at between 2-3% beneficial if I had chemo. Given the long term health risks of chemo and the mortality rate (1% of people treated with chemo die each year) what would you do?
I need to make the decision soon and keep dithering!

Sassy xx

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Re: HELP with a decision re Chemo or not

I was in the same position, borderline for chemo and that was only because of my age (51). 1.5cm tumour, grade 3, 2 lumpectomies with no clear margins and also with 2nd one finding another pinhead of cancer, so ended up having mastectomy which was clear. No lymph involvement. I decided to go with the chemo (6 FEC). I've had 5 of them now and pleased I decided to go for it. Just know, if it ever comes back and hadn't done it would blame myself.

Re: HELP with a decision re Chemo or not

Dear Deb

I have attached a link to one of our publications "AC chemotherapy"

http://www2.breastcancercare.org.uk/publications/treatment-side-effects/ac-chemotherapy-bcc195

I hope this helps

Take care

Very best wishes

Janet

BCC Facilitator

Re: HELP with a decision re Chemo or not

Hi Ladies,

Can anyone tell me AC is please.

Deb x

Re: HELP with a decision re Chemo or not

Hi Hollygipsy,

I've had x3 FEC and now change to something else. All I can say is it is not pleasent but definitely do-able. My worst SE have been nausea, I have not vomited since the anti sickness tablets were changed after the first time, sore mouth and tiredness. The SE last for about 10 days or so, nusea much less, then it all gets better progressively before the next one!!

Don't worry, you just have to remember each one is nearer to the end!

Good Luck
Fiona x

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Re: HELP with a decision re Chemo or not

Ruth13 and DJ007 you are right i looked and mine was mortality american thingy. hope your ok Kiwijan and samlee thanks for advice also christine and E and sheil hope i have not missed anyone but finding the scroll not so good on here. I told onc today yes to chemo and he said i had made the right decision. I am getting 6 xfec over 18 weeks does anyone know what fec is like; i have not had the talk yet they gave me the sheet to read but i always prefer hearing off people on here, thanks again lovely ladies was in depths of despair and cried all day thursday but doc gave me some diazepam and now the decision made and a date of 21feb i feel a bit better xxxxxxxxxxxxxxxthanks again xx

Re: HELP with a decision re Chemo or not

Hi Suzy,

Sorry I cannot answer your question but DJ007 is probably right , that we are looking at different things. My figures came from my onc using the online american adjuvant predicter or shared decision making syatem. it predicts your risk of recurrence over 10 years- mine was 37%. Yes I'm 49yrs, with invasive lobular, stage 2 grade 2.

But DJ007 is also right that you have to do what you are happy with, there is no right or wrong answer, but my onc strongly encouraged me towards chemo. However as DJ007 said, chemo comes with risks too- but so does life it appears!!

Good luck in your decision making- it is not easy, I really felt mine was already made.

Fiona x

Re: HELP with a decision re Chemo or not

Hi Suzy

What a worry - it's always difficult when the decision is up to you. Sometimes you just want them to say what you should do.

First off, on the stats, it might be that you and Ruth13 are talking about different things. Often they give two figures; the 10 year survival rate and the risk of recurrance.

In all these cases, the most important thing is that you make a decision that you are going to be happy with no matter what the outcome a few years down the line. The chemo will reduce your risk of recurrance and increase your chances of being here in 10 years time, but not by a huge percentage. Whether or not you have the chemo, there will always be a chance that it will come back. However, how will you feel if you hadn't had the chemo and you did have a recurrance? The other thing to consider is that certain chemos can have long-lasting effects. You may sail through, or you may find it quite debilitating - and you won't know which it is beforehand.

Just a couple of things to consider. It sounds as if, in your case, there is no 'right' or 'wrong' answer.

Sending hugs and good luck with your decision.
Dx

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Re: HELP with a decision re Chemo or not

TTmouse; it was a grade 2; they say i am stage 1 but its larger than 2cm so some say its stage2. Thanks Jo BCC, KIwijan i feel sick and dizzy thinking about it. Samlee thanks for your input and sorry you have to go through all that.Sheil cancer maths says it increases my recovery by 5% but onc said today 3%. 3% does not sound much but im wondering if i will spend the whole time just wishing i had it. Ruth13 i dont understand why your stats are so different yet we appear to have the same im 51 is it age related. they say 80 5 recovery 5% more with tamoxifen and 3% more with chemo..is it worth it. i just dont want it back so i am thinking yes it is , Thankyou and anymore advice greatly recieved im so tired and feel sick. And i feel bad for others in a worse boat than me, thanks again i dont know how i would have got through the last 8 weeks without this site, Suzy

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Re: HELP with a decision re Chemo or not

Hi Holly
I had invasive lobular too stage 2, grade 2 no lymph or vascular involvement, 4.9cm and very hormone receptive ..... so had mx and I am on tamoxifen. My oncologist arranged for me to have a test called oncodx which predicts your chance of recurrence by doing a series of genetic tests on a sample of your tumour. This test is available privately for patients who are borderline for chemo... samples are sent to the States.....and in the end my medical insurance co paid for it
Age is also a big factor...I was 51 at the time
The result was that chemo would increase my chance of non recurrence by 1%.....so no chemo
It helped reassure me that we had made the right decision
Hopes this helps and doesn't confuse matters
Lots of love E x

Re: HELP with a decision re Chemo or not

Struggling with the same question here. After mx in dec I was given diagnosis of grade 3 ductal breast cancer with extensive lymph node involvement. I would normally have had chemo, but I have already had six months of taxatere and ec chemo early 2011 for another breast cancer on the other breast. So now I am having radiotherapy first and waiting for the experts to advice on what further treatment options may exist and be suitable. I'd be keen to hear from more people how they approached the decision making process on whether to have chemo or not. Also is there anybody out there who has experience with second opinions to help answer this ?How do second opinions work, and have they been helpful?
Christine.

Re: HELP with a decision re Chemo or not

Hi HollyG,

I had grade 2, stage 2 invasive lobular BC like you, diagnosed in November. My tumour was also just over 2cm in size, hence stage 2. LN and blood vessels negative. I had WLE first, but then had to have MTX.

My onc used an on line american system called Adjuvant that tells you your chance on recurrence with or without chemo. It takes into count your age, BC stage and grade etc.

If I had no further Rx post surgery my chance of recurrence was 37%, chemo reduced this by 15% and tamoxifen another 11%. To me that left me with no choice and I am now half way through chemo! Speak to your BC nurse or onc , you might need more information to help you decide.

Fiona x

Re: HELP with a decision re Chemo or not

Hi HollyG
I have lobular, hormone +, node negative and bilateral, 3 tumours in all, biggest 2.1cm and smallest 3mm. Even though I had 3 I wasn't recommended chemo after having 2WLE's, just radiotherapy. I started doing a lot of reading as I could see people with similar or better signs on both this site and more on the US site were having chemo.

As some say, there are other factors which are taken into account, your age especially as I know they use chemo much more if you are young.

I wasn't 100% confident in the docs' recommendations so went ahead and had the Oncotype DX test done, which is expensive, but does give good indication if you would benefit from having chemo. It also takes a few weeks and not everybody wants to delay treatment like it did with me. It did put my mind at rest though when it came back saying chemo would have very little benefit. If you're the type that likes to look into things, there's also CancerMath, and Adjuvant Online which I think some oncs use to help people with this kind of decision.

Much good luck with whatever you choose. Its a very personal decision.

Sheila
X

Re: HELP with a decision re Chemo or not

Hi,

I find it easy to come down on the side of having chemo as when I was diagnosed in November 2010 I wasn't given any option because I had a large lump (45mm) and it was grade 3 aggressive. I had 4 sessions of AC over 8 weeks followed by 4 sessions of Paclitaxol over 8 weeks. I then had surgery, rads and have just finished 12 months of Herceptin.

The chemo for me was the difference between having a mx and a WLE, I had a WLE and was only in overnight, no nodes involved, and hardly any scar. My portacath scar is larger!!

I know there is no guarantee of it never coming back but I feel better knowing that my system has had a full dosing of chemo and from what I understand AC is one of the strongest (don't quote me on that though).

Like I say only you can make the decision, and as I also said it is easier once you have been through it and are at this side of it rather than still having to face it. I think if I had been borderline I would still have gone for it. Because out of all the treatments, chemo is the one that treats absolutely everywhere in your body and with a bit of luck no stray cells survive.

Good luck - the decision is the hardest thing, believe me.

S

Re: HELP with a decision re Chemo or not

Hi Hollygypsy

I am in exactly the same situation as you. I had a mx in November but they found a microscopic met cell in one lymph node and gave me the option of chemo or not. We talked about FEC over 18 weeks and the my onc suggested I go for the AC over a 9 week period - short and sharp. After much deliberation I've opted to have the chemo and am going for the AC regime. I start next Wednesday. I know its awful having to make the decision as I too was borderline but at the end of my appointment the onc said "If I was you I would have it - its like insurance for it not coming back". They talked about percentages etc too but at the end of the day its your decision - I just felt I'd listen to an expert!

Good luck with your decision!

X

Re: HELP with a decision re Chemo or not

Hi hollygypsy,

I have put for you below links to BCC's publication 'chemotherapy for BC' which you may find helpful. Also, do give the helpline here a ring and have a chat they will be able to explain to you in detail regarding the pros and cons for chemotherapy.

http://www2.breastcancercare.org.uk/publications/treatment-side-effects/chemotherapy-breast-cancer-b...

Hope this helps.

Take care,
Jo, Facilitator

Re: HELP with a decision re Chemo or not

what grade was the lump this is normally a main factor in deciding if chemo beneficial i think. have you a bcn who could maybe talk to you about the chemo options.

TTM xxx

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HELP with a decision re Chemo or not

had WLE 2.2cp lump removed. lymph node neg. blood vessel neg. and positive to estrogen. i am on the border for chemo as it is just over 2cm. i dont know what to do as i feel they are giving me pros and cons and leaving it to me. a lot of people talk of AC ? as a shorter 9 weeks weeks what is this? can anyone help. i dont want to refuse it if i need it and end up regretting it but dont want it for nothing...help