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

[@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

[@Gistaline]‍ 

Amaxing effort on the fundraising my lovely.  We are definitely on the same ride I think.  I'll donate my hair too as it's also long. Fab idea.  I'm actually ready to embrace this new challenge now. Bring it on!! However I'll let you know if I feel the same come Thursday!!!

Keeo me posted on the haircut xxx. Are you trying cold cap?

Hi motherharris and all, 

Hope you don't mind me joining in and saying hi. I've been reading all of the above and really know how you all feel. Just diagnosed and waiting for a treatment plan. Also told er+ but don't know anything about the 8/8 score nor the grade as I haven't had an operation yet... Waiting to see the oncologist. Meanwhile can't stop researching and trying to educate myself about this whole process. I could write a book on it and gain a PhD on it. 

I also just want to add that like you ladies I'm also feeling like a gladiator at the moment. Yes I can find it within me to fight the battle but instead of being freed I wonder what the future holds, how many more fights will there be in the arena? .... That is also the hardest part for me and sometimes I don't think people around me understand that.

One more thing though, it's really great how we are trying to just get on with life, I know you are looking forward to those weddings motherharris and the marathon, why not? Good on you for embracing this challenge. . How about a scarf tied to the side with a large hat on top.... Joan Collins style if you don't fancy a wig.

Xxxxxx

Welcome [@Starjo]‍  

Loving the scarf hat idea!!  Good luck with your upcoming treatment/op remember we are all here for each other.  I'm afraid my consultant has said no marathon for me this year!!! I can still if I feel up to it, but no more than 10 miles at a time!! I'll take that xxx

Hey [@Starjo]‍ and [@Motherharris]‍ 

Hope you ladies are keeping well - don't even know why we say that. So far the dentist and the guy doing my heart scan have said so are you fit and well? And then we all fell about laughing when I said yes except for the cancer :)

I am not going cold cap because I hear it's uncomfortable and I just don't fancy it. I am now a number 2 at the sides and a 4 on top apparently but once I know what is happening tomorrow, it can all be cropped. Motherharris have you seen the wedding turbans you can get? Been onto Amazon and the Deserina ones are lovely for every day but there are some proper glam ones too! 

Anyway how did today go? Got my oncology tomorrow so let's see what that brings and does anyone know why Coronavirus has to happen right now????

Big hugs ladies, we have got this xxx

Hi [@Gistaline]‍ 

Thanks for the headgear tip I'm definitely going to look at those.  First chemo session done on 11th.  Was booked in for cold cap but then binned it off.  I always said if I needed chemo the I would be bold and well, go bald.  The treatment went well. And was surprisingly quich. I'm having FEC-T. So three cycles of FEC and then 3 T. Felt quite tired after at dinner time. They gave me a diary which is really useful as there's a traffic light symptom checker in it. Any symptoms after chemo you check the chart and if it's green your fine. Amber you call my hospital cancer helpline straight away and red call them straight away and get ready to go to hospital.  
 

Ive felt a bit sickie today but eating little and often help.

Good luck  for your appointment 

xxx

Hi there,

Im currently undergoing FEC chemo for Grade 2 IDC. About to have my 3rd cycle. My first cycle I phoned the oncology nurses quite often as it's hard to know what to expect if you have any side effects, but the 2nd was a bit easier. Feeling a bit isolated as staying at home a lot as I don't want to risk Corona Virus. Honestly, the timing....

Silver 

Hi Silver

I know right!! The timing is impeccable.  More worry for my family too. My eldest son is in the army and has been away in Germany in a competition for them and not seen me prior to treatment starting.  He flies back tomorrow and is gutted he cant risk coming to see me. But it's just as easy to pick it up from my other children who are at college and secondary school.  It's scary yet frustrating too. 
 

Mother

Hi all, 

Saw the oncologist I am having Taxo/ Carbo 12 weeks every week then EC for 6 weeks 

Don't know if that is good, bad or doesn't make a difference

Starting on 25th March and told to isolate from them -- I am blessed I can work from home! 

G x

Hello Mother Harris  and Silver. 

Hope you are both getting on ok. Talk about being upagainst it?!! Nightmare times but you two appear to have it nailed. I can only guess what you are both going through but BIG respect. I am not sure I would  have your fortitude but your  strength gives us all a boost. 

My main opposition is my mind. I talk myself into a low mood on occasion but try hard not to go there. Life is tough but it will get better  

I am still toying with the idea of not taking hormones. MAY try them out though over the next 3 months. Might as well because I am not going anywhere!  

Sweet dreams. 

Go well. 

Kebbs x x 

Hi all, I haven't caught up in sometime. Just wishing you all a speedy recovery from every chemo. I'm hapoy for you all that it is going ahead. I'm still, "still" waiting for my post lumpectomy results. In a way worried that they won't offer me treatment that I need. Let's see eh.

Can't wait till all this corona business is over. Another challenge for us girls to face but nothing is impossible. 

Xxxxxx