Hi Jolamine, thank you for replying to me. 
My head is in a spin and I will be honest I feel worse now then when I got the original diagnosis. 
I think I was sure that after surgery that the hard part was over, all discussions were surgery and radio ... now I feel numb. 
I had stage 2 invasive ducal cancer of no special type, estrogen positive and HER2 negative. The initial biopsy showed clear lymph node so it was a shock after surgery when they had found it in one of them. 
I remember being told that if I had no option I wouldn't be getting one when I was discussing type of surgery and now I'm thinking that if I really needed chemotherapy it wouldn't be an option either? 
I'm so frightened of the sickness, the tiredness and ultimately the hair loss. In turn my fear makes me feel like a coward and a vain one at that and that is making me really angry with myself. 
I'm such a mess right now and I know I'm wittering on ..... 

Cx

 

Hi Clareabo, 

Although we all worry about surgery, treatment tends to be the more challenging time. Let’s look at your situation rationally. You have an invasive cancer which is grade 2 and has already spread to 1 lymph node. I know that this was a shock when you had previously been told that all was clear following biopsy. Sadly, this can happen. It is also not unusual to find that you need further surgery if a wide enough margin hasn’t been achieved. Most breast cancers are invasive, which means that it can potentially spread to other parts of the body, although this is only a possibility. Grade 2 cancer spreads faster than grade 1. This is the bad news, now for the good.

Your cancer is HER2 negative. HER 2 is a protein which helps the cancer to grow, so you don’t have that. Your cancer is oestrogen positive, so it should respond to hormone therapy. Have you asked your Oncologist to carry out any further tests to discover how much chemo may help you? There are a number of tests such as Nottingham Prognostic Index (NPI), PREDICT (predict.nhs.uk), Genomic assays, EndoPredict, Oncotype DX, or the Prosigna Breast Pronostic Gene Signature Assay. It would be worth discussing these with your care team.

There are different types of chemo drugs which can be given in different ways and combinations. The side-effects you mention can all occur with hormone therapy too, but they are all possible to overcome. You might find it helpful to write down a list of questions before you see your care team again. If you can, get the input of someone else too, as they often input with questions that you haven’t thought about. You might also find it helpful to give your breast care nurse a phone and ask for her opinion.

Whatever decision you reach, I hope that it is the right one for you. Please remember that we are always here for you.

Kind regards,

Jolamine xx

Hi Jolamine

Just to update that I am going for chemo. It's scary but I've put my brave pants on and I'm gonna do the right thing. 

just got to get my blood pressure down before I start at the end of the month. 

C

x
 

Hi Clareabo,

I am delighted to hear that you have come to a decision and trust that you are happy with it. I hope that you can manage to get your blood pressure down before you start chemo, but I expect that it won't be easy when you are under all this stress.

Please keep in touch and let us know how you get on and, remember that we are always here foryou.

Kind regards,

Jolamine xx

Hi [@Clareabo]‍ 
 

I was told that chemo was available to me but my oncologist said that due to my Oncotype score he didn't feel it was necessary. I won't go into all the whys n whatnots! But I wanted to tell you that I chose to go ahead with chemo. I couldn't deal with worrying about not having it and then the cancer coming back. I wanted to reduce the risk as much as possible and having chemo reduced my risk even more. 
 

So ... I'm now halfway through 4 rounds of TC chemo. I have it every 21 days. And I'm doing just fine. No sickness. No really horrid side effects at all. It's not ideal and I was so scared but it's nothing like I thought it would be. I'm using the cold cap and as yet I still have pretty much all my hair. I'm tired and the steroids i take for a few days after treatment mess up my sleep for a couple of nights but nothing too horrid.  I took less steroids this second time though as I didn't feel really poorly the first time so slept much better. The nurses are all beyond amazing and make the whole experience as bearable as it possibly can be. 
 

I know you'll worry  I was really anxious before my first one because it was the unknown. The second one has come and gone without a hitch  I'm whacked out for the first 5/6 days after but my energy levels pick up after that and I feel pretty much back to normal for the following 2 weeks. So try not to worry too much, it will be ok.

I have picked up lots of great chemo advice along the way, all of which has helped me hugely both during the treatment itself and afterwards. Happy to chat more if you'd like to. 
 

I had a second opinion and Oncologist No2 said 'Once you're out the other side you'll never regret having chemo but you may regret not having it'  As soon as I'd made the decision I knew it was the right one  for me.

Sending love Sarah xxx 

Hi Sarah. Thanks for the info.

I also decided that if it came back I would regret it but it was the fear that was stopping me. 

my treatment is 3 x EC and 3 x docetaxal spaced every 3 weeks  , 15 x radio then onto hormone tablets  

im terrified of losing my hair and I know from other chats that I'm not alone. The sickness is also bothering me but I've been reassured that this can be managed. 
 

im going to do cold cap and cross everything possible that it is successful but in the meantime I've asked a good friend to come wig shopping with me. I want to be prepared so that if it happens I can cope a little better. 
 

sending lots of love to everyone going through this, it's a club none of us wanted to join. 
 

C x

No problem. 
 

I wish you all the best. There is a FB group (if you're on FB) started by Paxman - the makers of the cooling cap used in the UK. I have found it really useful and hugely supportive. 
 

Sarah xx 

Awesome! I will Join it now.

I wasn't  sure what type of cap was used in the uk so this is also a massive help! 
 

C x

It's the Paxman Scalp Cooling Group. 
 

Don't get too drawn into the use of exercise bands to hold the cap closer to your head! We don't use them as standard over here. Just ensure the inner cap is a good fit. Not too small as it will rise up off your scalp during cooling. And that the outer cap is nice and tight. I'm using a medium inner and a small outer. So far I've lost minimal hair. Shedding usually begins about Day 17 (ish) after treatment. Mine started on Day 20. I shed each day for maybe 5/6 days and now it's stopped pretty much completely. It may start again - it's different for everyone. 
 

Sarah xx