Hello 

I had an onco test sent away to Boston too. No one suggested it would be high or low actually. It came back low (9) but I would have been happy with anything under 20 I think. I waited over 3 weeks for the result as it went off just before Christmas. That waiting was a bit nerve racking but I was very glad to hear that I  didn’t need chemo. Very lucky. 

Hold on. The treatment IS marvellous  Try and think the long game. Right now is scary and medically intensive but the brighter days WILL come.  I feel I can see an end in sight. I am not sure I will ever be quite the same person but in SOME ways  that will be a good thing!!! 

I wish you well  

Kebbs x 

Hi again

I started when I was 57/58, and I must say that I was really glad to have had it. I've been on Arimadex and Exemestane since then, and I've been advised to keep going for another 2 to 3 years. That would make it about 8 in all once... maybe... I could stop. No-one really knows, but I wouldn't want to stop if there's any chance that it could return. It was aggressive but I only had one nodule removed as it hadn't spread far. It could have affected more nodules, but the more you have removed, the more problems it creates. I guess it's the not knowing that is so unnerving.

Hello,

Just wanted to connect with you as I was diagnosed on Monday with Grade 3 IDC but mine is triple negative so I am going straight into chemo and then surgery and then radiotherapy. 

I have already said it's the long game worries me more than this first fight because I don't have the options for preventative and I am like what if I go through all this and it comes back? Take the boobies now!! 

I know the waiting is the absolute hardest as my first biopsies showed normal tissue because they missed it so a shock really for me, but it is what it is. 

Anyway maybe we will be going through this at the same time so might be good to have each other while we kick this cancer's butt 

G x

Hi G

Im sorry to hear that you are now a member of a club nobody wants to be in. But you will find great support on here. I totally understand where you are coming from regarding "take the boobies now!" But I guess there is a reason it's done this way. ‍♀️
 

I actually had a phone call yesterday from one of the breast care nurses to say that they've had an email from the company in USA that does the Oncotype DX test. They've got to do more testing on my sample and aren't sure the results will be ready for this Friday (6th). I'm gutted but I guess they are being thorough. I asked what extra tests are being done but the nurse said they didn't say.  She added that this does happen sometimes and it's nothing to worry about. I wouldn't say I'm worried exactly, just miffed that I don't know what the treatment plan is.

Please do keep in touch and let me know how you are doing and when your chemo starts. We are all here for you 

Jo xx

Morning all [@Gistaline]‍ [@Magsie]‍ [@kebb]‍ [@charliebabex]‍ 

So back from Centreparcs Longleat on Thursday. Oncologist appointment yesterday (6th), I need Chemo!!! Turns out my Oncotype DX score was a whopping 54!! Which equates to 39% chance of cancer recurring somewhere else in the body.  Chemo reduces it to 12%. Pretty much a done deal I think!! 
 

Also, the results from America have confirmed that it's actually triple negative.   Talk about rollercoaster ride! The consultant said that the initial biopsy showed it was ER positive but once they had a good old look at it they have discovered it is in fact triple negative.  I guess these things are never really certain until all the tests are done. 
 

So next week is, PICC line fitting, haircut possibly I'm still not sure! Chemo on Wednesday. They have booked me in for scalp cooling an hour before chemo. But I've heard that it doesn't always work and it's not pleasant.  I'm wondering whether to just not bother, get a pixie cut (I have long hair) and just brazen it out.  Any tips on handling chemo would be greatly appreciated.

Im heading off for a head clearing run now, while I still have the energy.

Speak soon my lovelies xx

Hi there 

So Chemo it is....not SO bad. My friend in Zimbabwe did the cooling first. She had lovely long brown hair. I don't know if it was the cooling, but it certainly worked and she didn't lose her hair. I guess it's individual. It would be easier just to buy a wig, but I guess I would have a pixie haircut, try the cooling with that. If it falls out in clumps, then there are some great wigs out there, and some think it's funky to have the shaved look!

All good so long as you get the treatment that you need. The hair you can re-think later! The chemo I'll have to leave to someone else as I didn't have it, but some of my friends were OK with it. You'll just have to set out on the journey and see how your body reacts.

Good luck! Keep me up-dated! Thinking of you.

Magsie

Thanks Magsie. You're right it's not SO bad. There are so many in a far worse predicament than me! I'm only stage 1. So I count my blessings.  I'm gonna go for the chop, scalp cooling and see how I get on xx

Great!! Positivity is the key! Stage 1 is good. I had Grade 3 Stage 1. I'm still here 5 years later!

Magsie

Hi, just seen your post and wanted to pop in.

Good luck for chemo, will you be having three fec followed by three T? I had fec chemo, it wasn't a walk in the park but it was totally doable.

chemo affects us all differently, I had to go straight to bed after infusion but my friend ( triple neg) used to go straight to Burger King then onto work! She was hard core...she completely sailed through the whole thing.

As for the cold cap, it's really 50/50, I know of successes and complete failures. There seems to be a trick, if your cold capping, cut your hair short and use plenty of the conditioner lotion they give you and get as tight as a fit as you possibly can. If your going to get thinning it will be on the top, where the cap doesn't quite fit on the scalp. Also take a paracetamol before you go and a blanket and gloves. If you haven't already watch Victoria Derbyshire YouTube video of her cold capping.

I shaved all mine off...I bit the bullet. I did have a wig but couldn't wear it for long as it was hot and scratchy. But I did like my turbans, had quite a collection in the end! 

If you get a chance, try and see your dentist before chemo starts....

Good luck love, you can do this..if I can anyone can! Get those pesky cycles ticked off one by one..before you know it you'll be half way through, then the last one....just think of it as another marathon,get your head down and dig in...but at the end you'll get a better medal...xx

[@Motherharris]‍ good morning! 

Well I know that rollercoaster well it's like ?????

But you have got this, same as I have and we are going to get through it together because I guess we are going to have similar chemo. 

I have been growing my hair out for two years after a pixie for the previous 15 years and it's now 15 inches. I am having mine chopped on Monday - well mostly buzz cut with a tiny bit of style for a few weeks - and donating it to the Little Princess Trust as they make real hair wigs for little ones going through chemo etc. I have also asked people to sponsor me to do it and have raised nearly £1000, and this has been a positive, along with my heart scan which showed my heart is working okay! 

I don't know about you but I am ready to start chemo now? I want to just get on with it. 

Bigs hugs, and I am here for you xxx