Hello all, just looking for any advice from anyone who has been through a similar situation……I had mastectomy 4 weeks ago, lymph nodes and margins all clear so I presumed next would be hormone med which I felt quite at ease with….however, was then informed oncotype test would be done to determine next step….test result came back putting me in high risk of reoccurrence, so now facing possibility of chemo which quite frankly is causing my anxiety levels to rise again! Waiting for appointment with oncologist to discuss, but feeling very confused 
!!……Any words of advice welcome….thanks x
Hello Mrsmillie,
I had a similar experience. The Oncotype DX test was recommended and my oncologist told me the results put me in the category where chemo would be of benefit. She reiterated that, as over 50 years old, any score over 26 would be in a category where chemo would be of benefit against recurrence.
She discussed what type of chemo I might be given (the regime) and gave me handouts of the potential side effects. She also told me that some women ask for chemo even if their score is below the threshold, and others make decisions she respects. I hope you are able to have a really good informative and reassuring discussion with your oncologist, they are there to help you.
I started my chemo mid July, and whilst no picnic, it IS manageable. My second round is on Friday and I know it’s for the best. Wishing you all the best, and I know it’s difficult but please try not to worry too much, xx
Hi mrsmillie
You’re in good hands and your team will know what they are doing. Chemo sounds horrifying (TV perceptions don’t help). I’m one of the unlucky ones who has developed secondary cancer and when I was told my chemo would be taking numerous tablets daily, I almost cried. I really wanted IV treatment which i had first time round. It felt more nurturing rather than any DIY!
Some women sail through chemo. Some, like me, are riddled with side effects and utterly miserable. But it’s time limited. You know it will be over in x number of weeks and you’ll move on to radiotherapy where, again, women respond differently. I found it a doddle compared to chemo and had no side effects.
You will have your treatment spelled out for you and be given an information pack which tells you all the side effects. They’d be negligent if they didn’t, but it’s pretty alarming. You soon get used to it. They give you a preliminary drip which includes a steroid, anti-emetic and antihistamine. This means you are unlikely to feel ill. After that, you get your chemo and you just have to keep yourself occupied without moving the cannula’d hand and setting your monitors bleeping. Then you have a quick saline drip to clean out the vein and you go home and wait and see how it affects you, accompanied by a goody bag from the pharmacy to counter each side effect.
It’s completely manageable- most of us have done it - and it’s definitely worth it. Diagnoses often change as they get more data (I had 4 diagnoses starting with ‘I don’t think you have anything to worry about’ and ending with ‘We need to throw everything at it.’) and , as I said, I’d rather be having it now than my current treatment!
I wish you all the best
Jan x
Hi I had a lumpectomy on Monday and knew from my diagnosis date I’d be having chemo then radiotherapy.
It upset me so much, knowing I’d lost my hair, feel sick and look ill for weeks/months. Chemo is one of those things you see people on TV having and it just terrified me. But, the cancer terrifies me more.
So I started reading some blogs on the Macmillan forum, found some Instagram people to follow, joined a local cancer Facebook group and started to find out more about chemo and what to expect. I’ve made lists of what people suggest you need to buy in preparation and just educated myself and spoke to people about how they coped.
I watched Victoria Derbyshire’s Youtube videos and read The Complete Guide to Breast Cancer by Tris Greenhalgh & Liz O’Riordan - both are excellent preparation.
I hope you don’t have to have chemo, but if you do, you’ll know its for the best and you’ll get through it
Lou x
Hi
I am in that terrible waiting time for an Oncotype test. Can I ask how big were your tumours or does it make a difference? I am strongly ER and PR positive and HER neg and grade 2.
0.5cm IDC - lymph nodes clear
just want to see what my chances are?
very worried it will come back high
I am in a whirlwind also started with DCIS told very unlikely they will find cancer.
Went in for operation found 8mm cancer.
Told treatment would be radiation and hormone tablet from surgeon.
Needed to have lymph nodes removed it would be 2 and if clear no chemo if i woke up all removed i knew id be having chemo so pleased i woke up only 2 removed.
Next stop oncologist on the fence for chemo so sent for oncotype test so scared as these will be back next week.
Im stage 1 grade 3 k27 score 56%.
Chemo is only going to give me 2% extra that we know so far on maybe floaters .
I can’t get in my head chemo does so much harm to your body to do this on a WHAT IF!