oncotype dx test - chemo decision

Hi Djct

I was offered chemo after diagnosis in 2021 because a couple of my lymph nodes were affected.  I was happy to go ahead, and turned down the offer of a trial which might have meant avoiding chemo altogether, because at the time I just wanted to take every treatment available!

I don’t know if the chemo will make a difference in terms of recurrence.  But personally I found the 4 and a half months of treatment pretty manageable.  I managed to go for a long walk nearly every day.  The only really grim bit was the 2-3 days after my first infusion, before I got the extra strong anti-sickness meds, but lots of things make me nauseous so I was always more susceptible to that.  Now when I look back I just think of it as a few weeks out of my life when I wasn’t on top form.  Nothing more dramatic than that.  I would do it again in a heartbeat if it would further reduce the possibility of recurrence.

I appreciate everyone has a different experience, just wanted to say that, for lots of us, chemo is pretty doable.  Best of luck with whatever you decide x

lvi? 

ok googled, micromess (sic) in sentinel, second clear. 

also have familial history of vein issues after chemo, rather not go down that road

Hmmm the other horror story is the cancer returning and in a higher grade and having spread. For me I would have given up my hair gladly to be given a better chance of it not returning. I was advised, accept everything that is offered. 

I need to stay alive for my son and myself. He needs me to help him constantly. I didn't need chemo and I'm 4 mths down the line with hormone blockers. I am dancing again, sheer determination. If I have to lie down for a week afterwards I don't care. 

If they advise something they aren't really giving you a choice. They are saying this is your best option to beat it. It's called informed choice but you need to have all the fats to really make that choice. When scared it's hard to retain everything, such a lot of pressure during these appts. 

I am playing devil's advocate a bit, two sides to every coin. It's a horrible stage to be at. Much easier when one is actually going through it. 

Lympho vascular invasion. It makes mets a bit more likely.  ER+ breast cancer is a sneaky one!

Also,  a less important thought is that insurance companies all ask if you have declined recommended treatment so travel insurance would be very expensive!

Oh I hadn't thought of that. I thought that related to if you had decided to have no treatment rather than chose one option over another. 

You can have positive nodes and no LVI, and negative nodes with LVI. It's a different route through blood rather than lymphatic fluid. 

no news of LVI, will ask when see the dr, thanks

Thanks. I am her2 negative so will ask about that when I see consultant tomorrow. 

Take care x

I didn’t want chemo but then what did I want ? To live or have it spread? I decided I wanted to live. Yes I had side effects, mainly tiredness, a feeling of total exhaustion at times, not a nice taste in my mouth, couple of trips to hospital with temp spikes that turned out to be nothing, but better to be safe. Oh yes and hair loss all over. Tiredness is difficult to deal with as even sleeping doesn’t get rid of it, however it does pass. Others can be dealt with, meds and wig or scarf and makeup. It did seem to feel like crap at the time but after each chemo you feel not so good and then begin to brighten up before the next. It’s rotten to know you will feel bad for a few days again but to me it was worth it. I want to live and have the best possible chance of no recurrence and to see my kids grow up.
Everyone is different and no one can predict exactly what side effects you will get. Some get hardly any and some get a few. Very unlikely you will get every single one mentioned. It is scary yes. Chemo is there to mop up any cells that are floating around the body that can’t be detected in scans. Radiotherapy will only do the area the tumour was in. 
It’s a personal choice and everyone has to make their own decisions. Remember we all hear the horror stories as everyone posts those. Not often people post the good stories.

Wishing you all the best for whatever you decided.

Hugs from cuffcake x x x x x

Gosh I can so understand how you feel, I was given the initial idea that it would be just a lumpectomy  & radiation for me, but having done the onco test with a result of 27 and other factors such as grade 3 growth and the tumour being bigger than they expected , I was advised to have chemo.

I was given 2 days to decide so things could crack on. I went into chemo without much mental preparation or knowledge, personally thinking that I had to try everything I could to minimise the risk of it returning. 

I was very naive and even though I tried the cold cap , it didn’t stop the loss of my hair. The thing I found worst was the nausea ,exhaustion and the loss of stamina and energy as well as the horrible metallic taste. 

I’ve just finished my chemo and am having a brief few weeks before radiation starts. I’m so relieved to have finished the chemo, yes it’s been incredibly hard and I did wonder what I had agreed to once I started to feel ill and drained which seemed to go on for ever. I’m just relieved it’s over now and I can get on with recovering. The way I’m trying to look at it is short term pain , long term gain- I hope !

Another thing that swayed me was that my aunt had a similar situation and decided to have chemo - she’s still here to tell the tale 19+ years later and is convinced that her decision to have chemo is central to her survival.

It is very much a personal decision that only you can weigh up for yourself , but I wish you the best of luck with whatever you choose.