Grade 3 Invasive Ductal Carcinoma

Hi

I would like to know from you lovely lot if anyone has had Oncotype DX test and your oncologist was expecting it to be high score for recurrence but actually turned out to be low.  
 

I have Grade 3 IDC highly ER positive 8/8 HER2 negative.  My oncologist thinks I will need chemo due to high ER score.  I find out on 6th March.  The hanging around and not knowing what the plan is, is doing my head in.  I know the waiting is frustrating for everyone on here, the thing that's keeping me going is my training for London Marathon but I'm even feeling like I can't be arsed to do that.

 

xxx

Parents
  • 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

  • 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

  • Hi [@Marlyn]‍ 

    Thank you for your reply.  I am having FEC T as you described.  I just need to get on with it now. Planning last long run for tomorrow and a meal out with friends onTuesday.  Typically I have three weddings to go to this year so on the look out for decent head gear to wear. Not sure I can handle a wig. Any recommendations for scarves etc? 
     

    I'll keep you posted on my journey!! 
     

    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

  • Hiya,

    yes I guess the Onco score was a bit of a shock. However the point of it is to establish the way forward. Chemo or not. It’s really good to know they have your back with the right treatment. 

    I am sure it won’t be a picnic but it’s a case of hanging on knowing you are going on the right path for you. 

    I cant remember if I said but I lost all my hair to alopecia about 10 years ago. It’s never grown back (IF you lose yours it will regrow!!) Anyway I was in a fix for a while over my hair but in all honesty I am happy with my wig and it’s totally part of me now. I think I still look ( and feel) attractive when I make the effort(!) All is well anyway. 

    Us band of women who have unwillingly joined a ‘club’ we never wanted to be part of is a support!! Use it!! I feel we are all just a bit ‘lost’ at times but we truly aren’t alone. I have learnt some helpful things through this site. Most of all perhaps to understand that support from those who really know how it feels  does help me. Does encourage me.

    Keep in touch. With this message comes a million positive vibes.

    Go easy  

    Kebbs x 

     

  • 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 

Reply
  • 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 

Children
  • 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