chemo or not? anyone else been given the option?

[chrissy16]

Ive just read the very sad book about Caron Keating (Gloria Hunnifords daughter). She was diagnosed with breast cancer stage 1, grade2, threw everything at it, did everything she could to try and keep it at bay. She had the best health treatment there is, and even tried alternative therapies, good organic food all the time. She did EVERYTHING she possibly could and it still came back in her spine. It just goes to show that whatever you do it may come back. It was a very sad book, and sometimes I think I should not have read it, but I did. You can have all the money in the world, the best food, the best treatment on offer and still nothing works. She was a very brave woman indeed. Alas, she died after fighting this dreadful disease for 7 years. chris x

[Lulu34]

Hi Sadie

like you i am TNBC Grade 3 no nodes diagnosed in may 2009 19mm tumour.... didnt have tax but had epi-cmf.... sadly mine is back too.

where did yours come back and what did they offer as next treatment?

as iv not had tax i thought they would offer that as its now in interpectoral nodes.... but been told it will be surgery followed by more rads and then bilat mx as im a brca 2 carrier.

got bone scan tomoz and ct next week to see if there is any other spread.

its poop!

Lx

[Guest user]

Hi, im TNBC. Grade 3 tumour diagnosis in 2009, no nodes involved. Had TAX chemo. Sadly mine is back! Spine and lungs. So.......am i glad i had the chemo?? Yes. I think it kept it away nd bought me more time. Of course i wish it stayed away, but it didnt. But chemo has another function. If it is going to come back, deleying this as much as possible. Just another perspective. Hard though, but im glad i went for it.

Sadie Xx Xx

[Katie61]

Hi,
I recently had that choice...
I had TC chemo 3.5 years ago, TN, Grade 3, 2.6cm, no nodes. I also had lumpectomy & rads. Recently I've had a local recurrence so have had MX and LD reconstruction. Initially my onc said that the tumour (which could be cells that survived original treatment or a new primary - they dont know) was so small 7mm that he probably wouldn't recommend further chemo. However when I met him last week he said it was debatable and he wouldnt twist my arm but on the balance of things he would recommend a course of CMF. He said it would reduce my chance of recurrence/spread which are 10 -15% by a third i.e. 3 - 5%. I think its worth going through. It might come back anyway, but at least I'm doing anything I can to reduce the odds.

Best wishes

Katie

[Lemongrove]

I always balk when I read about people being given odds like that, because a few percentage points sounds like such a miserable return for going through the nastiness of chemotherapy. Trouble is if cancer does return, it is 100% your problem.
Of course, chemo is not without risks, and that has to go into the equation, but it's not a simple cost/benefit exercise. The risks of chemo, can never outweigh the benefits, because it can potentially save lives.

[Anthi]

I was diagnosed four and a half years ago at the age of 60 and was also given the choice of chemo or not. In my case the possible extra benefit was thought to be 4 per cent.

I decided to have the chemo. I felt I wanted do everything possible to help myself and that if I had a recurrence and hadn't had the chemo I wouldn't forgive myself.

As many others have said, chemo is not nice but IS 'doable'. I got through it and am still (fingers crossed) here and cancer free.

Good luck with your decision.

Very best wishes
Anthi x

[Guest user]

I think it could be the rads Chris im okish but still find im very tired once the evening hits i'll be 4 weeks post rads this tomorrow.

speaking of the stats my onc said that its just a 'rough guide' not gospel & explained the same result can come out for up to as many as 5 different diagnosis with completely diff sizes of tumour, node & margin status & they are taken from figues as far back as 10 years ! so your right there Chris it is just a lottery, mine was 2-3 % my onc explained it very well & went into detail about my path results & why he thought I wouldn't benefit & took into concideration women he'd treated with my stats over all the years he'd been practicing which I think is alot better way of weighing it up, as he said its not you WILL be 2 or 3 women out of 100 that will benifit its you 'MIGHT' be one of the 2 or 3 women. I think mine was same as yours Chris 2/3 % on top of 90 something percent & look at our age difference !

I really do feel for anyone having to make the decision for themselves & as for Shelob where one consultant is saying something completely different that would just do my head in. I found it quite shocking, the surgeons at my hospital just give us the results & where there is an indecision they don't even go there & leave that between the patient & oncologist. My OH kept pressing the surgeon for his opinion as he knew how stressed out I would be having another week to wait to see onc & he just said sorry im not an oncologist he is the only one that can inform you with the correct info its his field not mine.

[chrissy16]

Shelob

My operation was on the 7th March this year. Afterwards I had an infection in the wound which took some time to heal up (was admitted to hospital to have intravenous antiobiotics). Then had radiotherapy which finished over a month ago now. I feel OK in myself, although I still feel very tired (maybe due to the radiotherapy). I am getting better all the time though, but some people say it takes a year to feel 100% again. My onc said I was borderline to have chemo, but I refused it anyway. He gave me an extra 3% on top of 90 something percent (cant remember now), which in my opinion was not enough to warrant the gruelling chemo process. As I said it is a lottery. chris x

[Guest user]

My Oncologist thought long and hard before recomending chemo plus radiotherapy after lumpectomy showed clear margins and no sentinel node involvement.
I think it was grade 3 and def triple neg.
I had 3 fec and 3 docetaxyl over a period of 18 weeks and while the SE's were unpleasant they were manageable and I have just completed 4 weeks of radiotherapy.
I feel much more confident that there will be less chance of secondaries with the treatment so am grateful for oncologist's decision,
Margaret

[Guest user]

hi if I had been given the choice I would have taken the chemo,

I have had 2 primaries 11 years apart one in each breast, i am 45 years old, so I would definately have taken anything offered to me

hope this helps

love Liz xxx

[Guest user]

I was initially told I would only need rads, but then my small tumours were found to be her2 positive. Without the chemo and herceptin I have an 86 per cent chance of it coming back, but with them it takes me up to 93 per cent. It was a no brainer for me, seven per cent may not sound alot, but thats seven extra people out of 100 getting secondaries in same position as me so the choice was easy.

[Guest user]

I do feel for anyone that is given the stats & told its up to them, what a horrid position to be put in & honestly thought thats what was going to happen to me I was more stressed the week between seing the consultant with my results & seeing the oncologist than I was after surgery up to getting the results.

I feel for my poor SIL she was diag 2 years ago HER2+ in her nodes so she had to have MX chemo but it made her so ill we thought we were going to lose her, it was withdrawn so she didn't complete them all, she now has a bad heart & damage to a lung, a big op to have half her large intestine removed ... so NOW cant have Heceptin because of her heart 😞 which is questionable if the chemo caused it .. some say yes some say no !! and now constantly getting infections a year past chemo ? she's half the woman she was before & very frail when I see her last Sunday OK she 'might' not be here today if she'd not had any chemo. But she is not in a good place now & it was lovely to just give her a cuddle & good cry together. Although alot of women get through chemo say its Doable .. it was seeing what my SIL went through that freaked me out knowing I may have to have it.

It is NO guarentee or insurance policy (maybe for the NHS say if it comes back) If that was the case EVERY cancer patient would be given it regardless. I would be on my knees begging for it if I was told having chemo would guarentee it wont come back.

[Guest user]

I was the same as you & Yellow my tumour was 7mm no nodes clean margins no vessels at my 1st appointment after my op I just see a consultant plastic surgeon who said in the meeting (with NO oncologist) they iffed & r'd said maybe boarderline grrr so had to wait another week to see my oncologist who said straight away he wasn't going to concider me for chemo I was very shocked but so relieved .. at the time I felt very alone too as all the TN ladies I knew had bigger tumours & were having chemo it was only on an american site that it seemed to be chemo was thrown at it whatever the size, but my onc gave his veiw on this which I wont go into & several of these women had reccurances ? YES there is such thing as over treatment ! Everyone is different & alot of factors are taken into concideration, Age & wether you are pre peri post menopausal too I was peri & now in menopause

I have since met several women TN with tiny tumours who just had rads so I feel more comfy & felt confident with my oncologist who knows his stuff, Mine might come back it might not but I do feel if it does it was going to anyway regardless if I had chemo or not

Mekala

[Guest user]

Hi Chrissie16
How long is it since you had your op and radiotherapy and how are you feeling in yourself? My op was a month ago, 6.5mm, grade 3, successfully removed, clear margins and lymph nodes. My onc is talking as if I am Triple Neg, but in actual fact he is still waiting for the progesterone result. My surgeon has told me I am cancer-free and he didn't think chemo would benefit me. How does your diagnosis compare to mine? What percentages were involved? I am 58 and devastated at the thought of chemo after being told I would only need radiotherapy.

[cherryorchard]

I recall that when I went for a follow up appt with my surgeon, which was after I had been given a treatment plan by the oncologist, my surgeon was surprised to learn that I was having chemo. The oncologist told me it gave me an extra 6% chance of being disease free in 10 yrs so it was pretty much a no-brainer for me but I wasn't really offered the choice. The onc pretty much insisted on it. When I told the surgeon this, he said that the policy was to assess patient risk using adjuvant on line and anyone over 5% was to be given chemo. Down to 2 or 3% benefit it should be recommended. I guess below 5% it becomes a decision between the oncologist and the patient.

[chrissy16]

Hi

I did not have chemo. Just surgery and radiotherapy (16 treatments). My oncologist did say that I could have it, but I declined having heard what he said about the percentages, which were not enough, in my opinion to put myself through gruelling chemo. I am 63 years of age. I have also known some women who have had chemo and the BC has returned, so it is not 100% effective (but what is?). I will do all I can to eat healthily, cut out fat, meat and sugar from my diet, exercise, drink lots of water, and generally be as healthy as I can. Its all a lottery really. As my onc said when I last saw her: go out into the world now and live your life, which I am doing. I cant say whether chemo is right or wrong, it is up to the individual and how strongly they feel about it. chris x

[Guest user]

Shelob,

Your onc should be able to tell you the additional survival prognosis if you were to have chemo using a program called adjuvant online (based on past stats of real women - but bear in mind they were treated 5-10 years ago, so medicine has moved on since then).

If chemo does look as though it would benefit you in the long term, please don't be too frightened. It's really not THAT bad. I was terrified. I've now had 5 sessions (started Tax this week) and so far I haven't had any bad side effects and have met many women who have experienced the same and have worked and looked after children all the way through chemo. However, some people do react badly - so you would need to weigh that up once you know if there is a benefit of having it.

Tough decision! Good luck. x

[Guest user]

Hi HD
I am in exactly the same situation as you altho my onc has recommended I should have chemo even tho they can't say there will be any benefit. Why would any woman choose to put herself thru such gruelling treatment with no positive outcome. My surgeon told me I was cancer free now and he didn't think that chemo would benefit me. Conflicting opinions which only confuse me more. There must be someone out there that can help us make such an important decision. Chemo was never mentioned for me until now and I have to decide by 8th June. I am in a terrible state - frightened to have it and frightened not to.
Shelob

[yellow]

Hi

I a coming up to 18 months after treatment for tnbc and I am getting scared. I had 7.5mm (< 1cm lump)stage 1 grade 2. node negative vascular negative. WLE and rads, no chemo. I was constantly being reassured by my breast team that my bc was a very early bc and that I had a good prognosis, they advised that chemo would be overtreatment at this stage. I based my decision on their advice and experience. The triple negative side of things did not appear to concern them. However, I know so much more about tnbc now and it scares me. I feel as though I am a time bomb ready to go off. I would seriously consider chemo if it reduced the risk of this terrible disease returning.

[Guest user]

I was told I gained an extra 5% survival chances if I had chemo. It did seem like a lot of scary stuff to go through for 5% but I decided that since I was only 45 and my children were 12 and 14 I would do it. That was in 2005 and now I'm glad I did. High in my mind was if I DID get a recurrence I didn't want to be thinking "what if? would I be OK if I'd had chemo?". Now I know if it does come back at lest I've done all I can.
It's obviously up to you but I would say - talk to people here and those you're close to, talk to your oncologist and BCN. Then make a decision and don't look back.
My oncologist was female, about the same age as me and with similar age children. She said she would not go through it if it was her. Then she went quiet and said "but maybe if I was on your side of the desk I would". That said a lot for me and I liked her for it.

[horace]

I was dx with grade 2 tnbc 2cm in Oct 2006,no nodes,clear margins,no vascular invasion.I was 62.I was offered FEC-T chemo to raise chance of survival about 3%.I had it because to me that was MY 3% and I wanted it so badly.I had my 3 year check/mammo last week and am still NED but I am always vigilant.I needed to throw everything available at the cancer because with tnbc there is nothing else for us after primary treatment and if we develop secondaries we have so few options compared with the other types of bc.

[hope]

I am also triple neg,aged 55 diagnosed end of March this year, 1.7mm grade 3 lump removed, no node involvement, followed by mastectomy and immediate reconstruction 4 weeks later as clear margins hadn't been achieved and as I am quite small my surgeon didn't feel he could achieve an acceptable looking good result with a further wle (that's a whole other story!). Finished chemo on Tuesday which is a great feeling and at least I feel I've done all I can.

I just want to flag up the fact that these are statistics, averages achieved from the cumulative experience of those who've not suffered a recurrence and the lower number who have. I think you should ask yourself how you would feel if you did get an recurrence knowing that you hadn't thrown everything at it.

I completely understand where you're coming from as after my first chemo I had reacted so badly (more likely to the Nuelasta injection rather than the EC) that I arranged a meeting with my onc to say I didn't feel it was worth doing, I was armed with loads of research and I was convinced that chemo could add very little. It took only a few words from my onc to change my mind. He said that I was placing too much emphasis on he fact that I had no node involvement and that even with clear nodes because of the triple negative receptors my chance of recurrence was greater than that of a similar person with ER+ bc and node involvement. He also reminded me that secondaries are incurable.

I hope this doesn't sound too harsh and I know it's easy for me looking from the other side of chemo to say it's doable, but it is. None were ever as bad as the first and when I moved on to the Taxol, which you might have, I found it very easy to deal with (relatively speaking.

Good luck with your decision. I know it's tough.

Lee x

[yellow]

Hi I too was diagnosed with tnbc in August 08 aged 55yrs. 7.5mm tumour (less than 1cm) no spread to nodes or vascular system. I had wide local exision and rads. Onc advised that with this treatment I had an 89% chance of surviving 10 years, if I had chemo as well it would have increased 2% to 91%. I decided that there was not enough percentage increase to go for chemo, also being vain I did not want to lose my hair. The choice is yours, but I think we are all aware that the reoccurance rate for tnbc is very high.

[Anthi]

I was 60 when I was diagnosed - 12mm grade 3 tumour, 2 positive nodes, HER2 +++ and ER/PR +. My onc said chemo would give me only 4% - 5% extra chance but I decided to go ahead as I felt I wanted to do everything possible to get rid of the cancer. As others have said, chemo isn't nice, but is doable.
I think if I was triple negative I would certainly go for chemo, but it's a difficult decision.
Good luck.
Anthi x

[Guest user]

I was 64 at dx with a 8mm tumour, nodes negative, but grade 3. I'm ER/PR negative but Her2 positive. My onc said there was an extra 2.5% chance with chemo, but he was quite happy for me not to have it as long as I had op and then rads. So that's what I opted to do and am happy with my choice. Dx in May 08. I think age has a lot to do with it, 50 and younger they are more keen to press you to have chemo.

[Guest user]

Hi,
My surgeon reckons with a grade 3 tripple negative breast cancer the only choice is chemo. I am 56 years old. He gave me a 7 per cent better chance with chemo. My lump is much bigger than yours , 4cm and he also said that if it was a grade 2, as Biopsy had suggested, then he would of still had recomended chemo. I must admit I am not that keen, but firstly I have to go through another operation on Monday 12th, because he didn't get quite enough clear margine. Not in lymph nodes. I guess just one step at a time although it seems at the moment a very slow process!!. Good luck whatever you decide.

[Guest user]

hi there,
i'm 34 and i was diagnosed with a 1.8cm grade 3, stage 1 TNBC with no lymph node involvement. it is like others have siad a very tough call to make. personally i felt the extra measure of chemo was worth it as a rubbish 6-12 months seemed worthwhile to minimise the risk of recurrence. i opted for chemo and 9 weeks ago i had a double mastectomy with immediate reconstruction (as i'm likely a gene carrier too). i go back to work in a month so normality does return and chemo is for many people, not the horror story you imagine and is definitely do-able. it is a very personal decision however. best of luck with everything.
x

[Guest user]

hi there, that's not an easy decision but like others have said chemo is do-able. i'm 34 and likely a gene carrier.i was diagnosed with a 1.8cm, stage 1 grade 3 DCIS tumour in late Jan 2009. i opted for chemo and a double mastectomy with immediate reconstruction. i even got married in the middle of it all. i go back to work in a month so normaility does come back eventually! i know it's only a few per cent more but for a rubbish 6-12 months i felt the extra measure were worth it. it's a very personal decision though. best of luck
x

[CrazyDancer]

That's a tough call, but I know when I was diagnosed I wanted to throw everything at it I could. I finished treatment last May, had chemo, mastectomy, and rads, I'm sure if I'd been given the option of having anything else that increased my chances even 1% I would have done it..... Chemo isn't easy, but is doable, and I'd want to know I'd done everything I could. Hope you find the right decision for you, not everyone feels the same.

Shannon
xxx

[Guest user]

I am 57 years of age and have just been diagnosed with triple negative breast cancer grade 3 tumour but only 1cm and not in the lymph nodes. I have been told that i hav an 88% chance of it not coming back with just radiotherapy and another 2-3% with the backup of chemotherapy. My oncologist has said he would not have chemo for that little extra percent but I just dont know what decision to make anyone in the same situation?