Triple positive - is chemo necessary?

Thanks Dreamthief.  I thought I'd got the hang of this but forgot to include my grade, it's 2.  My hospital doesn't seem to go in for staging so I don't have that figure.  

I had got my head around needing surgery, radiotherapy and tamoxifen but they threw in  the chemo curveball when I went for my surgery path results and I was a bit shocked.  I've read a lot about HER2 in the last 24 hours including a scientific paper that concludes chemo is not that effective for HER2+, ER+ cancers http://www.sciencedirect.com/science/article/pii/S0305737214002102 

Thanks for the heads up on the Predict tool - didn't know it existed.  Interestingly it only shows survival rates for me with hormone therapy and not chemo.   Maybe they won't want me to have it after all.  I have to stop second guessing but the waiting for the onco appt will be the hardest part - up to 4 weeks in this area. 

Thanks again, much appreciated x

Anyone out there with personal experience? 

Hi leen,  I was exactly the same as you,  grade 2,  I thought as well that I would avoid chemo until path reports came back with herceptin results,  I decided to have chemotherapy, I was speaking to two ladies in the chemotherapy day unit, they both had breast cancer before herceptin was available and both were herceptin positive, they were both back reoccurrence, however neither had chemotherapy the first time, nor herceptin and the reoccurrence happened 15 years down the line, it's a tough decision, one, only you can make, personally I think  for me my decision was right for me  x

Hi Lee, I have HER positive cancer and had chemo and currently still having  herceptin. I was told by my hospital that they won't give herceptin without chemo. 

To be honest I dreaded the idea of chemo but really it isn't so bad. I had more good days then bad days and was still out and about and doing the things I enjoy. 

I think it was worth it for the reassurance that I've thrown everything at it.

Good luck with whatever choice you make.

Jane xx

Hi Maggiemay and Jane, were you both ER positive?   

What a hard decision for you both to make and I admire you for going for chemo - it frightens the living daylights out of me.  My first grandchild is due in October and I cant bear the thought of being chemo ill when he/she arrives.  My son says he just wants me to be here to see the child grow up but I guess I want what I can't have and that's good health.  It always takes me a few sleeps before I can get my head around each new setback so I should be able to deal with this one eventually

Take care

Lee x

Lee, I was ER negative and they didn't seem too bothered that PR was highish! 

By my calculations if you started chemo now and it was the usual FEC-T x 6 sessions then you'd be all done mid September if that helps at all. You should be feeling ok by the time your grandchild is born and what a fantastically positive thing to aim for. I went to Center Parcs for 4 days a month after chemo ended and, whilst I was tired and bald, I had a great time. 

I know it seems daunting, I was absolutely terrified, but it honestly wasn't as bad as I thought. The thing is you tend to only hear the negative stories about chemo but there are a whole lot of people who only have minor issues during chemo. I had lots of side effects but they were fairly short lived. For instance I thought I would be sick from the day I started to the day I finished, but actually I was sick only twice after chemo and each time just on the day it was administered. My taste buds were shot to pieces, I lost all my hair, I've since lost all my toe nails but I also went out to meet friends lots for coffee, meals out, had a camping weekend with friends, went to the cinema and visited my daughter at uni. So, what I'm saying is it can be ok!

I think you're right it can sometimes take a few days to get your head around each step but you will get to a decision in your own time. 

Jane xx

Thanks for the encouragement Jane.  It's good to hear it's not all bad, when you read the postings it does seem like everyone has lots of problems but I guess we don't post when we're doing well.  I'm over the moon about the baby and it really is a target to aim for :)  good luck with the hair and toenails !!

Hi Lee

Just read your post and thought I would also give you a little more positivity!

It is such a daunting journey for all of us from start to finish but the start is always the worst,once you get into it you will find that time will just fly by,honestly!! 

I was diagnosed last November with ER+8 and PR+8 invasive BC with small high grade DCIS but HER neg. I had WLEand axillary clearance with 1/11 positive. My plan of treatment was to be radiotherapy then 10 years hormone treatment. Then the oncologist explained about chemo and the fact that I was borderline would be a good idea to have to mop up any cells and to hugely reduce my risk of it coming back ,but also the hormone treatment would be my biggest protection. He then worked out on the NHS Predict tool based on age etc ( 57) that my risk was 3% better if I had chemo than not . I then asked for the result of another test ( can't remember what it's called!) which measures the speed the cancer cells divide ,the oncologist said the level he would be happy with is 13 and mine came in at 24 so as you can see not much higher but still speedier than is desirable. Because of that and the fact that I had a better outcome in my eyes and my husbands it was a no brainer I opted for chemotherapy.

I can't say chemo is an easy journey and certainly different for everyone Lee but honestly so worth it for your peace of mind and future. I have just had chemo no. 5 ( Friday) and very proud of myself as it has for me been quite hard at times but so pleased I have carried on and my next will be the last!! 

This forum is fab and you can read so many great honest stories and of course occasionally there is a story of secondary cancer which really makes you think; sometimes chemo was maybe not recommended or perhaps chosen and so unfortunately has reoccurred very hard to deal with. I also have 2 friends who had breast cancer 7 years ago and not offered chemo and it has now returned. I really don't want to worry or alarm you but all of this has really helped me to realise the choice I made was the right one.

I think as you are HER positive you will be recommended to have it really think hard it is so so important for you to be happy with your decision but keep reading the stories here and I think you will be inspired by all these great ladies and men(!!) who post. Really it is all very doable just feels life has changed for a bit but I'm sure you can do it and we are all behind you!!!

So enough rambling ( chemo brain kicks in quite quickly you'll soon find out! makes you a bit daft and forgetful nothing new there for me!!)   

Sending you lots of positive thoughts for big decisions 

Genny

I had a similar experience,  I expected either that margins n lymphs would be clear and I'd get rads only or they wouldn't be and I'd get chemo, but no, that wasn't the case :(

I think that was one of the few times I cried, chemotherapy really frightened me, I hate hate hate being sick, but to be honest it wasn't as bad as I'd expected. I'm still on herceptin,  but now back at work with a full head of hair - prevention in this case was much the same as cure....