Real Longterm SE of Chemo

[Moya]

Hi Dudders

It might be worth asking your oncologist if they can get an Oncotype DX test done which will give you a much better idea of whether chemotherapy will be of benefit. It is now NICE approved but I think it is difficult to get it funded. I had it done privately and it gave me enough comfort to refuse chemo.

Hope that helps

Moya xx

[Maryland]

Hi Dudders......interestingly similar diagnosis to me, although both my Surgeon (an eminent bc researcher) and my Oncologist agreed that chemo would be recommended.  Grade 3,  2.9cm tumour, removed by WLE, no lymph node spread, and ER+3.  They were of the opinion (American research apparently) that any ER+ > 0 is positive!!  Although to be on the 'safe side' prescribed FEC-T rather than FEC.  Take Anastrozole (aromatase inhibitor) for ER+.  Surgeon was very clear that at the time bc diagnosis was a bit of a 'lottery' as other than having breasts, I had no other risk factors! They both also were in agreement that the surgery removes the tumour, and all the follow up treatment is 'belt and braces'....chemo for systemic treatment in case any stray miniscule cells have escaped, RT to 'cleanse' the area around the tumour and AI to help prevent risk of recurrence.  They also said that all the data is (as it has to be by its nature) up to 5 years out of date, and that survival stats are improving all the time; however there is no 'rule' that determines the future, hence why they use the terminology ' no worrying features' or 'no evidence of disease'.

So far so good, although every hospital appointment since end of radiotherapy has caused the stomach churning feeling!!!  All the treatment has caused 'issues'....still have some scar tissue from op which feels uncomfortable at times and affected breast is quite mis-shapen, ribs ache from RT and Anastrozole causes joint pain, ridiculous hot flushes, dry mouth and general feeling of being 90 at times.......HOWEVER I am loving life, still working (plan to retire early in 2 years at 61) and actually doing pretty much everything I was before diagnosis...just a bit slower hehehe.  Am a naturally optimistic person by nature (drives my husband nuts!) and just get on with whatever life throws at me....learnt at a very young age that worry gets you nowhere, just like a rocking chair!!!

I would probably say that the most important things to get you through chemo if you do decide to go that route is 1) keep a diary so that you can record medication, side effects, feelings and plan treats 2) don't suffer ANY side effects in silence, always ask your team for what you need 3) do what you need to retain control of your life 4) accept all offers of genuine help especially from those closest to you.

You look after yourself....M x

[Dudders]

Thankyou Ash66 and Maryland - you've certainly given me food for thought.

Ash, the tumour was 2.9cm at diagnosis but seems to have increased in size since the prodding of biopsy. Mastectomy hasn't been mentioned, only ever lumpectomy.

I suppose what I'm finding a bit tricky is that the goalposts have been moved for me. I was originally told that 3/8 made me ER+ and last minute the surgeon insists it makes me ER- which makes a difference of about 25% to my non treatment 5 year survival rate. When chemo made around a 5% difference I'd basically decided I wouldn't have it, so it was a bit like having the rug pulled out from under me (not to mention the cancelled lumpectomy!). But even with the adjusted figures and a more substantial gain to be had, it now leaves me with a 25% chance of not being here in 5 years, which is fairly sizeable and thus the is it worth it question remains. If my life is destined to be shorter, do I want to waste 6 months of it?!

Also, whilst I was in for my SNB I met two ladies who were back for a recurrence despite having had chemo and radiotherapy, so it seems as if it's just a roll of the dice anyway.

Additionally, it does seem from the bits and pieces I can glean that lower scores from biopsies often increase once the complete tumour analysis is carried out, which could potentially put me back in the 5% gain camp.

The surgeon doesn't necessarily fill me with confidence as despite several doctors having previously reassured me repeatedly that they didn't feel it had spread to my lymph nodes, it was fairly insistent it would have. Fortunately the SNB proved him wrong, but he was most dismissive of the impact this had on my 5 year figure. Hopefully the oncologist will be more informative and actually discuss it rather than telling me what they're going to do to me!

[Maryland]

Hi Dudders.......I am 3 years post FEC-T chemo, and although I coped well throughout with the usual side effects - even carried on working in a school for sanity!! - the reality now (for me, as everyone is affected differently) includes:

I was a fit and healthy 55 year old beforehand.....now I still exercise (completed the race for life 2 years ago) but get more tired easily and don't have the same stamina.  This may be general ageing, however feels quite extreme for just 3 years!

Hair is very, very fine and thin (was thick and curly) eyebrows still pretty much non-existent, eyelashes very sparse....although I do take Anastrozole which can impact on hair re-growth.

Lost quite a few finger and toe nails immediately post-chemo, even though I took really good care of them. It's the T (docetaxol) that stops growth at each infusion.  Nails are still quite brittle and flaky, splitting more easily.

Had peripheral neuropathy in feet and fingers.....one foot is almost totally recovered.....other is still not quite there....fingers can be quite temperamental!

Chemo brain (is real according to a recent Canadian study) is the worst long-term effect for me, and very frustrating....it is quite specific and different to general age-related memory issues!  I find it very difficult to concentrate...reading is no longer so  enjoyable.....struggle with finding the right words, remembering where things are, multi-tasking, paying attention, mind-wandering, remembering names, organising thoughts and learning new tasks....all things I was really, really good at pre-chemo.

I have recently taken part in a University PhD study on this subject, so results will be interesting.  Short-term, the activities did improve my cognition and concentration, however this has not been totally sustained! 

I hope that helps in some small way......at the end of the day treatment decisions are down to you, and you need to be at peace with whatever you decide to do.  Cannot stress enough that my experience will not be everyone's experience....very sensible to ask about longer term effects now, as during treatment your rational, thinking head does go awry and you are living 'in the moment' rather than necessarily thinking longer term.

I wish you well whatever you decide....take care M x

[Ash66]

Hi Dudders

Sorry you found yourself here. Sounds like you have a down to earth attitude like myself. That should serve you well.

Do you know what size your tumour is? Have they suggested mx? I would have thought if you had mx and there is no node involvement, you wouldn't need the chemo unless you are her2+ like me and that's why I had to take it or I wouldn't have got the Herceptin.

I was very lucky. I had few problems with chemo but I was very fit and healthy beforehand. Yes, I lost my hair but that didn't bother me much either. Once it was gone, I just wore hats when it was cold and then went commando once it was too warm for them.

I'm 5 months post chemo now and have a head of crazy hair and the only side effects I'm left with is a bit of peripheral neuropathy which is being ttreated and I get more tired than before but that could also be down to Herceptin. Every time I sit down on the sofa in the evening I fall asleep and interrupt my hubby's tv viewing with my snoring.

My mum was diagnosed when she was 70 and refused both chemo and radiotherapy. She's just had her 5 year check and been discharged.

Hope this helps x

[Dudders]

Having experienced a few things in recent years that had extremely low odds of occurring (one was 1/80,000!) and yet somehow they all found me, I'm inclined to think if something is going to happen it will whether you're in the 1% or the 99%.

So although the plan for my treatment has changed to chemo up front to shrink the tumour, I'm still not sure it's for me.  I couldn't give two figs if I lose my whole breast, but what I do care about is potential longterm side effects if I go down the chemo route.

I'm not looking to be swayed one way or the other, but I'd like to know what real life ladies who have been through chemo are living with as a result of it.  I would like to know even from those that have no lasting effects (do they exist?) and no matter how horrific it is, I just want the truth and not the sugar coated version!

I'm also curious to speak to anyone who has rejected chemo.  I appreciate this is a very personal thing and often not a popular decision so feel free to private message me if that's possible on this forum.

Thanks in advance for your responses xx