Just been diagnosed, BC - triple negative

Hi there,

I joined the group a couple of weeks ago after my scan and biopsy and found it useful and supportive reading what everyone is going through and their advice whilst we all face the C word!

I've now received my diagnosis and plucked up the courage to say 'HI!' :)  I'm still reading up on all the booklets i've received. A strange feeling really counting the days down to your appointment like a holiday without the excited feeling and now coming home with loads of booklets and not holiday brochures.  i feel strange that i have a sense of relief but a strange relief as I do have cancer and not the all clear.  Does anyone else have these mixed feelings?

I've been diagnosed with stage 2, grade 3 and triple negative.  Well from my understanding, i'm waiting for the confirmations to all come in the post.  I remember them saying 18 weeks chemo, 5cm tumour, lymph nodes, masectomy, radiotherapy....

I still feel very detached and like they are talking about someone else as i dont feel ill.  I was hoping to be pregnant :( so feel very sad tonight that is unlikely to happen now with my diagnosis and that i'm 42.

So mixed feelings all around tonight. 

Mich x

 

 

  • Hi Mich

    My skin went pink and still is in certain places above both breasts but its probably because I had 5 boosters and they are very intense.

    It wasn't until after 3 weeks of finishing that my skin broke down and I was prescribed barrier creams to seal the open wounds under the breasts.

    I was also told to cover the area up from the sun as it would be sensitive for life.

    6 weeks after my radiotherapy finished I had antibiotics because my left breast in particular was so swollen as that was the one on which I had the boosters and they were worried about any infection.

    My recent MRI report noted the effects the radiotherapy had had on the thickening of the skin on the left breast and that they were asymmetrical in terms of size!

    Dont worry as everyone is different and as long as you moisturise daily I'm sure you will be fine.

     

    Take care

    Big hugs 

    Karyn xxx

  • Thanks Mich

    It still is the waiting game for surgery at the moment in light of this dam virus delaying everything and the hospital have only given me a provisional date for the oophorectomy but I've been warned that this could be subject to being changed again!

    I have my breast plastics on 18th June for a review so am praying that its still going ahead as it seems so many appointments are still being cancelled even now.

    I'm glad you've had your mammogram but it does seem early though as mine wasn't until a year after my surgery and not after diagnosis as I assumed it would be so just goes to show how every area differs!

    I'm glad all of your arm exercises have paid off and you're feeling more mobile now, you have certainly come along way and yes we are all true warriors on here through everything we have endured and must congratulate ourselves for that and all celebrate after lockdown ends.

    A party meet up in Leigh on sea would be just perfect!

    Sue, Claire, Linda, Davia and Carla hope you're ok

    Big hugs to all

    Karyn xxxx

  • Hi Sue

    I'm definitely sold on that idea of a trip to Leigh-on-Sea after this lockdown ends, it would be great to meet up with everyone and definitely great therapy for us all with some sea air, lunch etc.

    Hope you've been feeling ok and sleeping better.

    Big hugs

     

    Karyn  xxxx 

     

  • Hi Davia,

    I'm glad mammogram is out of the way for you, it can be uncomfortable I know, mine was the same!

    I hope Tuesday goes well for you and that treatment can begin as soon as possible for you.

    Stay strong Davia and think positive and you will kick cancers a**e again, you can do this as you have before ok.

    Take care & enjoy a relaxing weekend 

     

    Big hugs

     

    Karyn  xxxx

  • Hi Ladies,

    I am so pleased that a trip to Leigh is on the cards. If you all feel up to it, after lunch we can take a 15 minute walk to the beach and cockle sheds. If not, a party  in the garden it is.

    With regards to  radiotheraphy, I was meant to have 3 weeks and then an extra week of boosters. Because of the virus, I had 4 weeks worth including the boosters done in 3 weeks so high doses. I still haven't had a reaction at all and my last one was on 4th May. I could get a delayed reation but no signs yet. In the back of my mind I wonder if it had less of an effect as the chemo left a 16mm tumor reduced down from 25mm.

    Davia and Karyn, you are both in my thoughts every day. Fast forward a year and we will be having a survivor warrior party with another celebration cake from Mich. 

    Lots of love to everyone, stay stong,

    Sue xxx

  • I had the boosters too, 3 weeks of normal then a week of boosters.

     

    x

  • Hi Ladies

    I had 3 weeks worth of rads in 5 days then 5 days of boosters, all I seem to have is a slightly pink boob on 1 side and my scar feels hard which is normal apparently because the rads cause the tissue to be inflamed.

    Sue I know you had a 16mm tumour left after chemo but did they tell you how much % of cancer was left in it? I have a friend who thought she didnt respond well to treatment but she only had 9% left in her tumour so chemo did its job by getting 91% of it.

    A trip sounds lovely to meet you all.

    Hope you ladies are ok. 

    Have a good weekend ladies stay safe xx

  • Hi Linda,

    I don't know what % was cancer just that they wasn't happy that I had so much left. I try not to dwell on it too much but it's not easy.

    Enjoy the sun xxxx

     

  • Hi Karyn

    I pray your appointment on 18th with recon surgeon goes ahead x thank you for good wishes for Tuesday, I won't hear anything until the 22nd when I have app with my oncologist, god I can't belive I have started again, but I'm not thinking about it, one day at a time, that's what I'm trying to do. 

    Sue thank you for your kind thoughts, it means a lot x  I can't imagine you will get a skin reaction from rads now, I think most ladies only have mild skin irritation, I think where is shrinks the flesh in the area you can get aches and discomfort from pulling, but they say keep doing excersize to keep it suple, i do have nerve pain in my arm, don't know if it's cording or the reacurance so BCN said wait until scans are done before seeing lymphodema or physio.

    Made a right *** out of myself today, neighbour was asking how I was and if I'm feeling better energy wise and I just started crying, no warning just bang, I told her what has happened, she is lovely neighbour, but hate to make people feel uncomfortable, I try and keep it chilly with people as some really don't like to talk about cancer, I've had one neighbour avoid me because she doesn't know what to say, I understand that in people, I tend to just do polite chit chat with most, I'm rambling sorry.

    Hope you ladies have a lovely weekend, keep well, hugs to all xxxxx

  • Hi  Davia 

    Thanks, I've had no message to say the appointment isn't going ahead on 18th and so just assuming it is really as you normally get a text message if its been cancelled with at least a weeks notice!

    Try not to worry about Tuesday but I know how difficult it will be afterwards waiting until 22nd for the results, and then hopefully you can begin your treatment plan as soon as possible.

    Try as you say to take one day at a time and not to think too far ahead into the future with what ifs etc.

    Just focus on the fact that you are going to beat this disease. You've done it once and you will again.

    At least you know what to expect now and you can prepare everything in advance for your battle!

    Think positive Davia,  you are so brave with what you have already been through and you can do this although I so wish you didn't have to but it is what it is and I know you will deal with it.

    With regard to your neighbour and other people in relation to your diagnosis, I used to find people deliberately tried to avoid me because they felt uncomfortable and didn't know what to say!

    The truth is that only us ladies know what it is like to have been through what we have been through and nobody else could possibly understand how we have been affected and still continue to be so even after diagnosis.

    I give an example of one of my friends when she referred to me as a cancer sufferer and it almost reduced me to tears as I dont want to be labelled as that forever and I still find it hard to live under that cloud!

    I put her straight saying that I was no longer a cancer sufferer as she put it but was in remission and she didn't know what to say to that and she can still be prone to insensitivity.

    I now try and avoid anyone approaching the subject because I know that it makes me feel uncomfortable around people that can never to relate what us ladies  have experienced and also I dont want their attitude to change towards me just because of cancer

    Some people generally just dont know what to say to you but none of us want to be treated any differently because of cancer so just polite chit chat is probably the best option as you say Davia.

    Enjoy your weekend  Davia and dont overdo it, listen to your body and I'm sending positive thoughts your way!

    Linda, Carla, Sue, Claire and Mich, hope your all ok ladies and been enjoying the sunshine.

    Big hugs alround xxxx

    Karyn xxxx