Newbie here

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Hi all - Recently got diagnosed with Grade 3 Triple Negative. I'm terrified. Chemo first then surgery. I can't believe this has happened to me, I'm 39. Really looking for some support xx

  • Hello . I have (or hope I no longer have) a grade 3 triple negative tumour. I had surgery first and I start chemo on Tuesday. 4 cycles of EC (every 3 weeks) followed by 12 weeks of weekly Paclitaxel. Sorry you have joined a club you didn’t want to be a member of. There are several people with TNBC who post on this site. Welcome. 

  • Hi there sorry to hear you are having to go through this. This group has lovely women going through very similar experiences. Everyone is a huge support so reach out with any questions. We are all here to help each other. I do hope all your treatment goes well! X

  • Hi RC24   - Hello darling, please dont be terrified,

    I was diagnsed in December 2009 with TNBC Grade 3 and wayy hey - Im still alive and kicking, strutting my stuff.   (absolutely didnt think I would be reading Google)

    DONT GOOGLE. - IT WILL BAMBIOZLE YOU

    DONT LISTEN TO

    People who say oh my Aunties sister in law, mum/cousin/ /grandmother etc had cancer and died or is ok - they are trying to do their best but hey Aggghhhh -  dont need to hear that as much as they are trying to support you.

    All; chemo treatments are different - so dont be worrying about one person who says they sturggled, your treatment is tailored to you and most importanty to your needs and cancer type re stage and grade.

    This is your story - every case is individual your conusltants will have prepared the right plan of action for your case.  Trust them and yes of course question if you feel need to

    Most of all, cry when you want to (preferably hiding it from your children if you have them) 

    Telll your family how you are feeling - if you can ( I couldnt I didnt know how I felt myself)

    Think positive - science is grand - treatment is best

    ps you will gain supportive people who will become friends and you will loose aresholes who  car crash friends your journey.

    so much more to say but basics said

    sincerely wish you all the best hunnie xx

  • Thank you so much for your kind words and support. I'm really struggling with what's ahead of me. I can't think of anything else and Google/Instagram have made my anxiety sky high.

    I'm newly single and whilst my parents have been a brilliant support I feel so isolated in not knowing anyone else going through this at my age, nor having someone at home to give me a cuddle or some reassurance when my inner voice gets too loud. I am due to have my PIC line put in tomorrow and I just can't really deal with it all.

    Honestly thank you for taking the time to send me the above. It helps more than you know xx

  • Dear @RC24. That inner voice is a real nuisance isn’t it. I am lucky that I am not alone but I sometimes feel like screaming at the walls. A diagnosis like this comes right out of nowhere and upends much of what you know about yourself. I find myself hugely frustrated with the admin side of my hospital, but the care has been excellent, and I am finding it easiest just to put my trust in the staff. They have seen it all before. I am also having a port fitted tomorrow and I have my first chemo on Tuesday, so I will be sitting next to you in spirit as we go through this. 

  • Hi sending lots of support for tomorrow. It’s comforting to know someone else will be navigating this with me, I’ll be thinking of you and sending lots of love. 

    All my thoughts right now are catastrophic in all the ways. I’m struggling to calm myself, weirdly I think starting will help. Right now I feel like I have a tsunami heading towards me and I’m stood there frozen. Jumping in will at least help me figure out how to ride it xx

  • I think that’s right. Once you are getting treatment you will have a schedule of appointments and it will be just a case of getting on with it. When is your first chemo and what drugs are you having?

  • First one is in 2 weeks, they are going with an accelerated first cycle of EC x 4 every 2 weeks, then Paclitaxel weekly with a dose of Carboplatin every 3rd week for 12 weeks.

    It feels like a lot, will be 20 weeks in total with a 2-week break. I worry my body and my mind won't be able to sustain it...

  • Yes I also have 4xEC. My first cycle is 2 weeks then the others are 3 weeks. Then 12 Paclitaxel but not the carboplatin. So we will be doing this at more or less the same time as I start this week and have 23 weeks. I am trying to tell myself that this is for my long term good, that there will be an end to it, and that I have to just get through it. I am going to plan some treats for the last weekend in cycles 2, 3 and 4 of EC. I have booked a wig fitting appointment but am also trying cold cap. I have got in a few things to try to help with side effects - various ginger based drinks, Polybalm for my nails, cold gel packs for my hands and feet. I have also bought a couple of turbans and already have lots of scarves. Most importantly just take it a day at a time. You will sustain it. 

  • I’ve reached out for a wig consultation but am trying the cold cap as well. I’m yet to look at turbans but I know I’ll need to soon. I fluctuate between a ‘“let’s crack on, head down and get through it” approach vs one where I just don’t want any of this to be happening to me to the point I’m totally frozen in fear.

    At the moment this feels like a lifetime. And I jump ahead wondering what this will do to me as a person longer term. I talk about my anxieties and fears and always boomerang back to the base facts that it doesn’t change anything. I still have to go through it. My mind is too overstimulated right now and I’m struggling to quiet it. I think I’ve put my head in the sand and assumed not much would change. In reality I’m sure it’ll be somewhere in the middle of best case and worst case. Please stay in touch, I could really do with someone virtually holding my hand through this right now x