Chemo decision today and I'm wavering

[lexilou3]

Thx for this update, i must admit i did have a wobble recently re not having taken chemo , but feel rebalanced again.now. x

[Seabreeze]

Hi,
Thought I should do a brief update in case it helps others.....a few months post end of radio, and post seeing threads about the subject of to chemo or not to chemo re border-liners....I went back to clarify matters with the consultant. It seems that adjuvant online and Predict online, while very similar have different brackets re size of lump etc and stats provided. I was told that they usually view 5% increased survival after 10 years (age 40 ish now) as the line for chemo being required (they consider overall impact on body). If just below, then it depends on type of cancer, primarily whether oestrogen positive.
The oncotype test can help inform whether chemo is really needed. Apparently it's not carried out as standard but can be requested (you may need to pay for it...although I read somewhere else on the forum it may be available on NHS from April 2015?
Hope that helps someone who hears the words borderline for chemo...
Seabreeze

[lexilou3]

Hi Jets & Seabreeze,

In the wee hours last night I found this thread, attempted to reply twice but fat fingers on tiny phone keyboard thwarted me.....

So - from my position, after biopsy / surgery, revised diagnoses & SNB, I met with the oncologist. Radiotherapy was a given, chemo (as in direct into veins) was also discussed. I was advised this would make a 2-3 % difference, but was not without its own unique risks to my health. In addition due to the hormone status I would be recommended to take hormonal meds for 5 yrs (as current advice dictates).

After discussion I felt confident to decline chemo - I felt given my diagnosis & personal circumstances, coupled with the advice from the MDT via the oncologist, this was the right choice for me.

Having made that decision I thought no more about it until I stumbled across this thread. In some respects having read the posts here I feel naive - yet I have not looked back.

I have deliberately not disclosed my diagnosis here as believe it may detract from the discussions held. If you wish to know more, please private message me & I will happily disclose,

Best wishes with your decision & may you find the peace of mind that brings, with no more short notice cancellations.

Lexilou x

[Seabreeze]

Thanks Jets,
Googled oncotype dx test and found info on breast cancer care website plus the US breast cancer.org site. Consultant has agreed to see me to clarify position re borderline chemo, adjuvant online and predict online which is good. Thanks again for the info...thought I'd googled it all but not that!
Seabreeze

[JETS]

Hi Seabreeze - not as last minute as the one that was cancelled when I arrived at the hospital - been told this one an admin error and they are hoping to try to sort something for next week ,... Will phone tomorrow if don't hear anything today.
have you heard of the oncotype DX test? You should ask your consultant as if you are HER neg but hormone positive and not in nodes you would meet criteria for this gene test. I have a friend in New York and its standard there now and moves the decision to more bespoke persoa l assessment on your tumour and genes. Still your decision and will be available on NHS (not yet so will cost unless your trust will lay - NICE have recommended). IAfter research I am now of the view that I want as much info as possible to try to make an assessment of the benefit of chemo to me .
Sraah

[Seabreeze]

Jets,
That's a bit last min of the hospital. Did they give you an idea re how long till yr rescheduled appointment?
If you do need rads they need yr skin to be pretty well healed beforehand anyway.

Thanks to everyone else who responded below - having initially being told I didn't need chemo (ie not offered), then being told borderline (consultant for radio rather than 1st onicologist/surgeon) I've decided to see if I can get another appointment just to clarify facts etc in my mind.
Mine was oestrogen positive, Her neg, invasive, but none of nodes removed showed positive...I think given size of lump if it hadn't been oestrogen positive would def have meant chemo..I.do take thyroxine so that may have pos meant they didn't recommend chemo if small increased %.
Helpful reading how different individuals have thought about the narrow increased % re to chemo/not to chemo debate.
Thank you
Seabreeze

[JETS]

Well joy of joys hosp cancelled weds appt due to admin error - tbh I'm so busy trying to get well post bilateral that I'm not that bothered - they are going to rearrange and let me know ASAP - bit more time to 'dwell' x my cancer will be responsive to tamoxifen - my only worry with the onco delay is it delays and other treatment and don't want the cancer being sneaky in the meantime 😠

[gazzlyn]

Hi Jets, Its a so tough isn't it? They told me my percentage was 2.8% but he felt it would be higher than that because I was 3/8 and told hormone therapy would not be beneficial. Therefore no safety net. My tumour was 6.5mm with no node involvement but my family said any chance is a chance and as I haven't any safety net then I should go with it (which I have). I feel if I didn't I would spend my life thinking what if, what if...the oncologist said to me, it takes one small cell. Its scary isn't it? would be so much easy if it was put to you as chemo or no chemo. Good luck in whatever you decide, go with what you feel is right for you and be happy with your decision xxx

[ThePianist]

I'll be thinking of you on Wednesday! x

[JETS]

Thank you the pianist x this becomes such an emotional issue - I have oncology meeting on weds and think the extra benefit to me is likely to be low but have also been warned I might be told I'm borderline so it makes it hard when we deal with 1% chances etc - I am hoping I'll be able to have the oncotype dx test as I meet the criteria and it gives a more personal analysis of benefits of chemo - but your friends analogy of pregnancy is a good one and I have found that helpful to try to put into perspective some of the figures I'm being given x hard hard choices though - esp when youngish with teen children x

[ThePianist]

I hope you don't mind me jumping in on a thread here, but I was initially told that they were not recommending chemo for me but when I met the oncologist she started talking about the percentage benefits. I got a bit upset as I didn't think it was still on the table, but they said they just wanted to let me know what was on offer. Once I calmed down I said I really couldn't face chemo and they were happy with that as the benefits would only be 4 - 5 %. But when I got home I spoke to a friend and asked if she thought I was being silly and not doing everything I could! I said I felt like 5% was quite a high improvement and I should have taken it. But this is what my friend said: "If you were desperate for a baby and I told you that you only had a 5% chance of getting pregnant would you call that high?" I suddenly didn't feel stupid for turning it down, and I haven't looked back. Numbers all become very skewed and meaningless when you have something this huge on your plate, but the right people will help you. The point I'm trying to make is that no-one is obliged to do what anyone thinks, as long as we listen to the advice the decision is ours and we will make the right one for us. Apart from when tumours need to be shrunk, I understood that chemo was a preventative measure. 

[Matty2]

Hi

Now also looking at next stage of treatment.

Have been told I am HER- and hormone pos so have already begun Lamastrozole (2nd menopause already begun yuk)

I had my Lymph nodes tested before my mastex as I wanted an implant - I was told they are clear so may not need radiotherapy as well. Final results based on breast tissue and everything else I think are on Friday.

I also want to go in a bit more prepared than I have been previously

At moment I am hoping that the results stand but having had so many it 'probably isn't' I feel prepared fro radiotherapy and whatever!!

[emilysss]

I had a 3cm grade 1 tumour with lymph nodes involved, and a 6-8% advantage with chemo, but I was given the choice of whether I wanted to go ahead with chemo or not. I decided that 6% was not insignificant so went ahead, and oncologist decided that it should be FEC75 rather than FEC-T.

I wish there were more set guidelines on when chemo is necessary and what protocol should be used. I think that would make it easier to feel more confident about the treatment and decisions.

[Amalfi]

I think if you are triple negative you would be offered chemo. When I was diagnosed all grade 3 were given chemo. But I think they look at it differently now. I've heard talk of luminal a and b. I think even if you are grade 3 now, depending on other criteria you may not need chemo.

[keepmumsane]

Hi, her2+ status goes with chemo because herceptin to treat it is not licensed to be used without chemo. thry need to moniter you very closely as it can affect your heart.  

I was told I would need chemo simply because of my lump size (5cm) , however the her2+ cancer is a fast grower and they need to be sure they've caught it. I am node clear and clear margins too.

I was also told most breast cancers are hormone positive, the her2 status is an added bonus. Booo

Xx

[JETS]

Hi seabreezwx surfacing from bilateral mx and awake at odd times ! But now starting to move my head towards the next stage which I won't know until I get my full report in a couple if weeks - I found this post helpful as I am confused about whether I might be offered chemo or not x. For a change I would like to feel a bit more informed BEFORE I get any news!!! I've done a little bit of sensitive Google work and understand (vaguely) that the use of chemo is tied up with HER2 status - this link was helpful as an explanation to me and might also explain a bit about the borderline q that you have ? http://www.breastcancer.org/symptoms/diagnosis/her2
You could maybe phone your bCN to find out what kind of test was done? Rather than go crazy waiting for another appointment in a year. The thing I'm not understanding is that I was told I was her2 negative after my first biopsy that confirmed cancer - but now I understand that diagnosis might change? I think her2 negative doesn't respond so well to chemo but don't understand whether others who on here have opted to have this despite being negative or whether you only get offered it when you are positive? I was also told I was hormone positive so am guessing at tamoxifen and rad treatment ( I'm 45 per menopause) will be on agenda but don't kniw if the hormone status also affects the offer of chemo .... Head reeling ... Sarah x

[Seabreeze]

Suez,
Thanks, I understand what you mean re individuals type of bc, my concern is that it's 3% increased risk for 10 years based on my type of cancer. The only thing Predict doesn't seem to include is radio or other non bc health factors. That's why I'm now wondering why it wasn't offered or discussed.
Seabreeze

[Boa]

Suez

Everyone will have their own views on this but I will give my experience. The surgeon said that there would be no chemo but after a further op to clear the margins it suddenly came on the menu. No-one was really clear about why ( comtinuity of seeing people wasnt brilliant where I was treated) but I saw an oncologist about it and it turned out that as my cancer was HER2 positive it might be receptive to Hercepetin which you can get only with chemo. For my profile -it's not you as an individual they talk about when giving % its about the type of profile you have - the added benefit was 3%. I know that many people say that you should take all you are offered but my view was to weigh up the benefit of the here and now with chemo experience and the future. The oncologist made no attempt to persuade me and the oncologist i saw regarding radiotherapy said something to the effect of 'a good decison not to have it'.  My cancer was also hormone receptive so I am taking letrozole with very few side effects. I  wish you wisdom with your decision making.Boa

[Seabreeze]

Hi,
Initially when I got the results of the margins and nodes I was told I didn't need chemo but would need radio and hormone therapy (tamoxifen).
I subsequently met the consultant re radiotherapy who misunderstood a question and told me I was borderline for chemo and that this could be discussed. I was at the consultation on my own and didn't really follow up since I had q's about risks if I delayed start of taking tamoxifen to find out about fertility etc - ie my thoughts were on a v different path.
it was only later that a doc mentioned adjuvant online and much later after that that I found the various levels of info on predict online. According to that chemo would increase survival stats 1.2% over 5yrs and 3% over 10 years. I'm in my early 40's so very perplexed as to why I was initially told no chemo needed, particularly when reading others experiences. I'm just starting back at work and probably won't get to see a consultant until after my annual check up the first of which will be in the summer. Unless they didn't offer it re risks given I take thyroxine?
Anyone know or had a similar experience? In hindsight really wish I had someone with me when I met the onc re radio and the borderline comment was made.
Seabreeze

[Murphy1963]

Hi suez, sorry to hear you are in this position. It is a hard decision to make and unfortunately only you can decide. I did go ahead and have chemo. My regime was for 6 x fec. Unfortunately my chemo was stopped after 4 sessions. I became very ill, my body wasn't coping with the chemo and my oncologist decided the benefits of another 2 chemos were just not worth the risk. I have to say I would've preferred to finish but it wasn't to be.

Chemo is doable and I am glad i chose to have it. I won't lie to you though, it is tough, but you will get through it. I am now day 7 of rads and have started taking letrozole yesterday. Things have moved on for me and I'm looking forward to going back to work next month hopefully.

Please get back to me if you need any more info. I hope you can make the decision you are happy with. I have no regrets.

Best wishes to you xxx

[suez]

So helpful reading this am in a similarame position in that i decide on chemo next week and find myself jumping from one decision to the next every hour.

I wasnt offered the gene test they dont do it at our place so not sure what the stats are. My head feels like bursting they say my cancer is out with clear margins and no lymph involvment seen. Its hormone receptive so will definetly have radiotherapy and tamoxifen but should i opt for chemo too? Help.....

[ncscooby]

Hi murphy, I expect you already made a decision as this was yesterday but I thought it was important to give another perspective on this. My percentage was 4.5 I fell in to a grey area, between 1-3 they actually say the benefit is negligible and over 5 it's a must. The onc wouldn't tell me what to do. I declined chemo and I do not have one regret. I don't think it's right to imply that if you don't have it you aren't throwing everything at it or fighting it, chemo isn't the be all and end all, it's one out of many (no for all admittedly) treatments you can take up. Ultimately it's how you feel, and what you know your body can and can't handle or want to handle. It's what is right for the individual and I think people should be very careful about word choices.
I wish you well in whatever your decision was. X

[Melena]

Hello Murphy.

I had chemo and RADS and am now on Letrozole. I wanted anything they could give me. I am  15months down the line now and doing well.

It is your descision, I know your daughter is trying to help and will be feeling lots of different emotions. My daughters were brilliant and supported me with whatever I wanted as did my husband.

It has already been said to you 2% is 2% every little helps. Chemo is not quite as bad as you imagine and you will get through it. The staff on our chemo unit were fantastic and so supportive.

Good luck

xxx

[maltomlin1]

Hi.........I'm over 6 years out........doing well & enjoying life. It's a difficult decision but I'm still here after chemo etc

[chascat]

Hi Murphy, having been there myself I do sympathise, however, for me it was a no brainer, 2% was 2%, I could have no regrets. I realise to your daughter it's too small a benefit but how would she feel if you fell into that 2%? Somebody will and nobody knows who that will be. Remember it's your decision, not your daughters, you have to feel you've done the right thing for you and nobody else. Take care and keep your chin up x

[Murphy1963]

Go to onc with my decision today whether to have chemo. Decided on fri I was going to do it. I've just heard through my daughters partner than my daughter doesn't think it's worth doing it due to the percentages I was quoted using the predict tool (2% advantage). I'm wavering now, she was at the meeting last week with me when chemo was being discussed. The onc and BCN wouldn't tell me either way what they would do, only that some women do it and others choose not to. Why is this so bloody difficult, my head is going to combust, my stomach is doing summersaults. Would be so much easier to just get told you are having this, although I appreciate totally that would mean I wasn't as fortunate as some ladies. Sorry, rant over xxxxxx