Overwhelmed by chemo decision

Owww dearest ,

I am so sorry you find yourself here, but, in a way, if you had to join any groups then this is the best group to join..... now, sit down, take a deep breath in and breathe - you 'will' through this, you will get help and advise, this group and the many ladies here are truly amazing, you are in the right place and from now on, you are not alone.  

I will try and link/tag the 'predict a tool' its an NHS webpage where you can enter various details and it gives you various predictions depending on treatments, etc,  have a look.

https://breast.predict.nhs.uk/

Also, things to consider whilst you wait for other ladies to come along and give you advice, a few thoughts...

If they now said you don't need chemo? ... would this make you think that you may have opted for it to be extra sure there are no stray cells (just a thought).

Do you know what has made them change their mind?
Maybe this is difference of opinion between Surgeon and Oncologist

Did your Surgeon get 'clear' margins? 

No need to answer these questions, they are thoughts for you to consider.

Now then, I will also add, you make not have taken any of this in and who would expect you to, take it slowly and ladies that have already or are treading the same or similar path as you will come along and offer you help and support.

It is quite here during the night, some ladies do pop on the 'Awake' thread - you could post there too, but, rest assured you will get good advise from the ladies on here - most will be sleeping at the moment, as moomy, one of the ladies has been out and sprinkled 'sleep dust' over them (we are mad here and you will be soon, you will, you are in safe hands here).

Please don't lye away worrying about this, easy for me to type, but, your remember your worrying is going to drain you and it is none productive - try and get some sleep and in the morning I am sure others will of posted advice on here for you.  

This is a link to another thread on this forum, the question was asked before, this may offer you some advice or guidance....

https://community.macmillan.org.uk/cancer_types/breast-cancer/f/breast-cancer-forum/179303/chemo-or-not-to-chemo-invasive-lobular-cancer?Page=0#1331320

Just remember, you are in the right place - you are safe and all will be okay - you will get thought this.  Most of us have said this journey is like a roller coaster ride, you didn't buy a ticket, you just got pushed on the ride regardless, you are on the ride now, you will have twists, turns, low, highs along the ride - but you will get there, you will.

Offering you a virtual hug, please try and get some sleep (I'm going to bed now, I was just heading off when I seen your post, I had to reply to you) and remember...

WhatHappened, Thanks for the response and particularly for the link to the previous discussion - and the Don't Worry message, I need to go back and read it all more carefully but several things have struck me already. 

First I am very lucky - the tumour was small (9mm), it was removed with clear margins, and there was no evidence of lymph node involvement. So I guess that is about as good as it gets. I asked the surgeon why I was suddenly getting the advice to talk to an oncologist and he was adamant that 'nothing had changed' . I got the impression that they felt they had to offer chemo because it was there. 

The doctors so far have been very kind but I am losing faith in getting honest answers from any of them. The radiologist was '95% certain this was a cyst and wouldn't say that unless she was confident' (it wasn't). The surgeon seemed to say 'radiation but probably no need for chemo' - until he referred me to the oncologist to talk about chemo - and the oncologist was clear and sent me away with all the statistics, chemo options and long lists of possible side effects but won't give me a recommendation.   

I spent all of yesterday  running and rerunning the  PREDICT tool with different chemo options and survival length times, then making myself a chart summarising the whole lot - and I suppose that was useful in it's way but on the whole was probably a displacement activity. - and I just get more and more upset trying to make the outcomes look different by including or not including decimal points!

The bottom line is that the extra benefit from FEC treatment comes out at 2.7% at 5 years and 3.1% at 15 years, and for FEC-T it comes out at 4.5-5.2%. These numbers seem much much lower than the ones on the other thread where people are undecided. 

I had always thought (before it was me) that a cancer patient would be a fool to refuse any treatment that was offered -  but the list of chemo side effects frightens me, in particular issues related to my joints and muscles (I have pretty painful knees) and I also have been treated for depression on and off for 40 years and I don;t want to come out of this feeling like a permanent invalid. In lots of ways I feel my body is stronger than my mind. Even so - the thought of avoiding chemo makes me feel as if I'm a coward taking the easy option.  

My oncologist referred to the FEC treatment as 'the weak one' and the FEC-T treatment as 'the tough one' - neither of which helps me have confidence in choosing either. 

And the other thread other raises the possiblity of other tests (OncotypeDX) for tumours that were hormone positive at low low scores - whereas my oncologist said they weren't appropriate for me. I'm so confused.   

Hi Joanf, chemo is recommended for triple negative breast cancer because there isn't really any other treatment,  and it is usually grade 3, so aggressive. Yours is very small,  which is fantastic,  but it's still TN  and grade 3. Did they find anything else in the pathology,  like LVI? That isn't on Breast Predict,  but would br another factor for chemo.  They are just trying to cure you,  so are usually quite aggressive in treatment, and add someone who had  a 4% gain from chemo at 10 years ( probably less statistically add no LVI) struggled to justify it too.  That 4% however,  took my chance of death from BC in 10 years (again,  who knows what advances will be made so what the updated figure will be) from 1/11.5 to 1/17 and I know which group I'd choose! It seems long and hard,  but there actually good weeks with  EC, and good days with Paclitaxel.  You'll also be supported well,  thr'chemo thread' here is great,  and there are things you can do to protect your hair and nails.

Hi. Thank you for responding though I don';t think I understand everything you have written. First my Oncologist said I wasn't triple negative as the allred score for PR was 2/8 (but hormone treatment woudn't be effective as the score was too low). So I don;t know if I am or not - or even if it makes any difference.  Is LVI yph fluid invasion? If so then no - So nothing found. What is EC? Is that FEC without the F? so why not the F? and what/why Paclitaxel? 

I thought I was pretty well informed about Breast cancer having been close friends with 3 people who have had it - but t seems like I know nothing at all.  

EC is indeed FEC without the F. Lots of oncologists give it as the side effects are a little less challenging,  but it's given usually for 4 cycles instead of 3. There are two Taxanes, Docetaxel and Paclitaxel. Docetaxel is given over 3 cycles,  but again is a little more challenging, and a very small percentage of women may have permanent hair loss from it (though not if cold capping) and you 'may' feel more nausea with it. Paclitaxel is given over 12 weeks or 4x 2-weeks. They both have a risk of peripheral neuropathy,  so you will be monitored, and must tell the team/ chemo nurses as your oncologist might lower the  dose or stop if it gets bad. It's good that you don't have LVI:) There is so much science about breast cancer, with new treatments and discoveries all the time, so hard to keep up. I'm talking party in thr Optima trial, looking at the safety of testing tumors of women with ER+ bc with limited node involvement to see if they will benefit (or not) from chemo based on the results so some might be considered candidates to avoid it. This is now done for women who are ER+ with clear nodes,  where some are actually given chemo based on the predicted risk from the results. That's one trial,  but there are currently 48 different breast cancer trials recruiting in the UK alone!

Hi

So sorry you find yourself in this quandary- it may be worth calling Breastcancernow and explaining your situation. They have lots of specialist advice and support just for breast cancer. https://breastcancernow.org/information-support/facing-breast-cancer

Chemotherapy is extremely useful for some women , however the dilemma is balancing the pros and cons without knowing what the end outcome may be. 

In terms of treatment, chemotherapy has risks both with unpleasant side effects and also the possibility (however small) of longer term health issues. The prediction tools are useful but are just that , predictions. I also think age also has a part to play , my mum declined chemotherapy when she had breast cancer 13 years ago aged 69, and is still here with us and as fit as a fiddle. She was concerned that the chemotherapy would cause her long lasting issues and said she would rather have 5 years of good health than 10 years of poor health - that may seem a bit flippant but it was her view and she is glad she took that decision.

I had weekly paclitaxol and suffer with neuropathy, I was 51 when I had that and struggle with my feet on a daily basis , so I would factor your current health into the picture too.  
It may also be worth speaking to your GP, as well as your breast cancer nurse ? 

I hope you get some good advice from reliable sources - we are not medically trained on here and can only relay our experiences, it is a shame your consultant has left you to make such an important decision.

Jo x