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

 

 

Parents
  • Hello ladies, hope you don't mind me gatecrashing your thread, but I've just read through it all and it's made me feel so much better, your all so nice and posative

    I was diagnosed with triple negative BC in June, I am on my 5 of 8 cycles of chemo, these last four being Carpoplatin and paxataxil, there breaking down the paxataxil to every week, i have my last chemo on 6th January and although we shouldn't wish our lives away, I can't wait, after that it will be surgery and radiotherapy, I have three lymph nodes under my arm and two lymphs under breast, but on last scan the two under breast have cleared, I'd like to ask if any of you on paxataxil oy carboplatin have had fuzzy head, I can't explain it but fuzzy slight dizzy head, I'm at day 10, my other cycle I felt so much better by day 10, it's not really bad but just annoying as I can't drive while feeling like this. Again lovely to read all your posts and really hoping your all feeling well, xxx

  • Hey Davia

    Of course not, welcome to our group that no ones want to join haha!  I was diagnosed in August so just had my 3rd course on Tuesday.  Not feeling too bad at the moment, fingers crossed it stays that way.  I have 1 more of EC then i go onto the carbo / paxo and paxo weekly.  Hope there are no major side affects of these.  How you doing on these drugs, just the dizzyness.  

    I have in my lymph nodes too so will have to have all of them out, little worried about the opp but one day at a time eh.  I'm also waiting on my brca test, guess they will send a letter confirming yay or nay.

    Yeah i could drive for a few days after my second one, felt like i was on drugs all week!

    I managed the cold cap on Tuesday, but hair is thinning quite a bit so not sure if I'll carry on .

    Hugs

    xx

  • Davia you beat me to it. Manukau honey, great stuff! Mich when I started getting a sore tongue a spoonful of Manila honey a day sorted it out within about 3 days. I didn't take anything else for it.

     

    Love to all x

  • Hi Ladies, I've just read a really good article I found on another site, I can't cut and paste as it's a bit long, but you may find it useful. Google 

    After the Treatment Finishes, Then what

    By Dr Peter Harvey, Consultant Clinical Psychologist

    I found it really good and it explains a lot of feelings we have that others don't understand, or we feel guilty because we're not feeling the way we or others expect us to feel.

    Keep safe today with this storm Dennis brewing xxx

  • Hey Linda

    I had the same with my pre assessments so early in the morn at 8am.  I drink loads before i go to bed, have water and squash when i wake up, do the flappy arms chicken dance and they still cant get to my veins!  Last week my assessment was later at 1020 and voila, she found it.  She did say it was tiny but no probs.

    Hope the side affects are not too bad for you and you are relaxing this weekend.  Deff a day for recharging the batteries indoors eh!

    Hey Davia, glad to hear you are managing ok .  How are the exercises going? Are you still going for blood tests?

    Thanks ladies, i've heard manuka is good for you.  Going to order some now :)  My mouth is feeling a lot better the past couple of days.  Stll bit of a nose bleed.

    Ah thanks Davia I'll take a read.  Last week was rough, i felt so low but numb couldn't get past the foggy wall didn't want to talk, was so zombie and blue.  I was convinced my hubby wanted  to leave me and the cancer might as well reoccur now and get it over and done with.  so dont want to have those horrible feelings again this week. So taking one step at a time. 

    Claire i'm doing the utube mediation videos too they help me relax and sleep, think i should do some during the day when i feel my mood changing lol!

    How you feeling now Claire, hope you not in too much pain. 

    Sue are you near Leigh on Sea?  I see there is a charity called The Bennos Boob Foundation and they do charity events and evenings raising funds for triple negative research. I found them on facebook, they are on instagram too and located in Essex. 

    Happy Sunday vibes xxx

     

     

  • Hi Mich,

    I live in Leigh on Sea, small world! I'll look up the charity online. I too am feeling morbid and sorry for myself. I've worked myself up about the results the surgeon is giving me on Friday. I keep thinking that the cancer has spread and keep imagining lumps in other parts of my body. My husband doesn't understand and tells me I'm being stupid.

    I hope you start feeling brighter soon, I think we all have bad days. Stay strong, we will fight this

    Love and hugs,

    Sue xxx

  • Haha how spooky eh!  Seems like a lovely lady that has set up this charity from when she was diagnosed a few years ago. 

    Are you having another scan on Friday?  Is that when they say the margins are clear.  I know its horrible, i was convinced it was in my bones last week as my rib cage was so sore on the left! No idea why, it is feeling a bit better this week. 

    I know my husband doesn't like to hear when i'm morbid, he doesn't know what to say.  Its hard on them as they just want to keep postivie and keep things going and a sense or normality. 

    Thanks doing ok today, going to the cinema in a mo to watch Bad Boys lol!

    Hugs all around xxx

  • Hi Mich,

    Enjoy the film. I'm not sure if I'm having a scan on Friday, I didn't think of that. The removed nodes get examined and I'm not too sure how they tell if it's spread. I feel frightened all the time and it's not a good feeling. I'll snap out of it.

    Enjoy the  popcorn

    XXX

  • Hi Mich, I felt really emotional on carbo/ pax and I to was convinced it had spread, I had and still have a tender area just left of sternum, I know now it isn't anything as had pet scan, and since finishing chemo, I've had aches in leg and arms, I read this is common after chemo, wished they told us this beforehand, I still sit here and get little niggles like, maybe they didn't scan that area or maybe it didn't pick it up, my lovely hubby just looks at me and says, no, you have had so many scans you glow in the dark lol I do think psx/carbo does make you feel more emotional, I sometimes just sat there with tears streaming out of my eyes for no reason, I'd say to my hubby, ignore them, there just doing it for no reason lol its such a very hard emotional road but we will and can do this xxx

    I'm going on my look good feel good tomorrow, take my mind of surgery on 25th

    Sue I hope your results are posative, let us know how you get on, xxx

    Keep well ladies xxx

     

  • I think it must be completely normal to feel all these things - that it must have spread, that every niggle or pain is cancer. 
     

    I saw my surgeon today, there was no cancer in any of the tissue they took during the surgery, clear margins, I'm officially cancer free. I felt hugely relieved at the time and of course I'm happy but there's also still a niggling doubt/worry and I'm not sure that will ever go away.

     

    The doctors here said they would still go ahead with radiation as it was triple negative and had spread to a lymph node but I'll have to see what the hospital says.

    Sue they will just tell you based on examining the tissue removed. I've got everything crossed for you!


    Davia, how was your look good feel good?

     

    Mich, how was the film? Is that a remake?

     

    Lindy how are you?

     

    Love to all x

     

     

  • Hi Claire,

    I am so happy for you, it will be such a relief for you and you're family. The worry about reacurrance will never go away but we will all learn to live with it.

    I'm terrified about my appointment with the Surgeon on Friday but at least i'll know one way or the other. I'm having 3 or 4 weeks of radiotheraphy whatever the outcome.

    Love to everyone

    Sue xxx

  • Hi Claire, that's great news, really happy for you xxx

    Sue we are all anxious about results, it's totally understandable, let us know how you get on, will be thinking of you, xxx

    Lindy luu 

    How is the paxol going? I hope its bei g kind to you xx

    Mich, hope hubby is recovering well and your mouth is feeling better with the cream, xxx

    I went to my, look good feel better course yesterday, it was such a laugh, and you get so much, they give you a black bag full of everything you need, I even got a perfume. I learned a few tricks to, you ladies will enjoy it when you go :)

    I'm a bit concerned as I've just started a cold and my surgery is next Tuesday, I will be so anxious if they postpone it, I've waited four & half weeks and keep worrying it's going to spread, I've upped the vit C, zink, and manuka honey and am gargling with salt water and drinking loads, fingers crossed it clears before next week

    Well keep well ladies, xxxx

Reply
  • Hi Claire, that's great news, really happy for you xxx

    Sue we are all anxious about results, it's totally understandable, let us know how you get on, will be thinking of you, xxx

    Lindy luu 

    How is the paxol going? I hope its bei g kind to you xx

    Mich, hope hubby is recovering well and your mouth is feeling better with the cream, xxx

    I went to my, look good feel better course yesterday, it was such a laugh, and you get so much, they give you a black bag full of everything you need, I even got a perfume. I learned a few tricks to, you ladies will enjoy it when you go :)

    I'm a bit concerned as I've just started a cold and my surgery is next Tuesday, I will be so anxious if they postpone it, I've waited four & half weeks and keep worrying it's going to spread, I've upped the vit C, zink, and manuka honey and am gargling with salt water and drinking loads, fingers crossed it clears before next week

    Well keep well ladies, xxxx

Children
  • Hi Ladies,

    Davia, let's hope it's a 24 hour bug/cold. My surgery was 6 weeks after my last chemo, they have to keep you within safe limits.The look good, feel better workshop is great and you meet people in the same boat.I've kept in touch with 2 ladies I met there and one lives round the corner to me so we've met up several times.

    Mich, the hospital gave me a bottle of Benzydamine to numb my mouth and a bottle of Chlorhexidine Gluconate mouth wash when I had a sore mouth and mouth ulcers. It really helped. 

    Linda, how are you coping with the Chemo? 

    Claire,how are you feeling? I expect you're emotions are all over the place but you are nearly at the end of treatment. let us know if you need radiotheraphy. It is meant to be a walk in the park after Chemo.

    Love and strength to you all,

    Sue xxx

  • Hey ladies,

    Ah thats great news Claire, so happy to hear that :)  You feeling ok after surgery?

    Thanks Sue, my mouth is feeling better this week.  I do have the Chlorhexidine Gluconate mouth wash and some other gel solution stuff that tastes like liquirish.  But this week it seems as if i have the hand rash back and nose bleed.  Real mixed bag eh.  I have ordered manuka honey, its coming tomorrow, ooh and apple cider vinegar.  Heard its really good for you and you can drink it with warm water and honey as well as cooking with it. 

    Good luck for Friday Sue :)

    sorry to hear you have a cold Davia, such a pain.  Hope it clears up in the next few days.  Sounds like you are doing all the right things.  Ooh a big goody bag, cant wait!  I'm looking forward to meeting other ladies too!

    it is weird with emotions, you feel more anxious towards end of chemo, i thought it would be the other way around.  Guess its a case of near the end of one journey but still a long road. 

    I baked a cake for my friends birthday today so feel good about that, faffed quite a bit in the kitchen so bit of back ache. Its her 60th so she will be chuffed and going out for dinner tonight.

    Hope you all well ladies and sending some good vibes

    xxx

  • Hey ladies 

     

    How's it going? Thinking of you today Sue

    I'm at the unit now having my last Taxol /Carbo combo! And I'm actually still awake! 

    Any plans for the weekend? 

    Big hugs xxx

  • Hi Mich 

    Just think only two weeks left of chemo it will fly by, hope your mouth is feeling better. Have you got scan after chemo? I had to be two weeks clear of chemo for pet scan. 

    Sue also thinking of you xx

    Claire how you feeling? Are you having rads?

    I'm getting ready for Tuesday, got to be at hospital at 7am I'm hoping to be first in, I am feeling very nervous but keep telling myself that lots of ladies have had this op and managed,  my pre op was very straight forward, they say 1-2 nights stay depending, its normally 1. 

    Keep well ladies xxxx

     

  • Hey Ladies.

    I had my 1st Doxe on 14th Feb, constipated on day 2 and by day 4 I was completly out the game,I actually told my family I was having no more chemo as the pain was worse than I've ever experienced. I've not slept for the last 3 nights and i actually spent the last 2 days crying day and night! After many calls to my GP i now have Oramorph so hoping I get some sleep tonight. 

    Anyway managed to nod off at 6am this morning and had to get back up at 7.30 as i had an appointment to see my surgeon, he reasurred me they will lower the dose of the next cycle. He felt where my lump was and he said it has gone!! Spoke about my Brca as not had results yet but he said he is happy to do preventative surgery of my choice if i am positive. My op date is pencilled in for 22nd April.

    Sorry for the long message lol I hope you are all doing ok, remember ladies its bloody tough but we are all warriors.

    Love & Hugs

    Linda xx

  • Hi ladies,

    Linda, I'm sorry you have had such a rough time. Let's hope the reduced dose will be kinder to you. You're emotions will be all over the place so it's no surprise you are tearful.

    Mich how's the rash and nose bleeds?

    Davia, good luck for Tuesday. I'm sure you will be fine,  I was so nervous too, It's the unknown.

    Claire, how are you recovering? I'm still sore and tender but ok besides that.

    On a positive note, I saw the Surgeon yesterday and I am officially cancer free. I just feel numb and guilty that I don't feel like doing cartwheels. It's really strange as I should be estatic!! I am still very scared of a reacurrance but I will learn to live with it.

    Lots of love to you all and have a wonderful weekend,

    Sue xxx

  • Oh bless you Linda, you have had a really tough time of it, fingers crossed when they reduce the dose it will be better for you. Good new that the lump has gone, xxx

    Sue that's amazing news,  really happy for you xxx

    Have a good weekend ladies, keep well xxx

     

     

  • Hi guys, 

    I was diagnosed with BC earlier this year and yesterday my consultant confirmed that it is triple negative. 

    Scheduled for second surgery on Thursday to check lymph nodes and clear more margins. Chemotheraphy to follow after. 

    Thank you for all your posts, it makes me feel there is light in the tunnel after all. 
     

    xx
     

     

  • Morning ladies, 

    Ah that's great news Sue, so glad to hear that. I get the numb feeling as it's been quite a rollarcoaster we have been on and no doubt we feel quite different with everything we have experienced. But we'll take this experience forward and create something positive like our Warrior group! There is a course I'm wait listed for when treatment finishes. It's arranged by Breast cancer now called moving forward. It's one day a few for a few weeks and helps you cope with getting out there after treatment and sense of normality. Ill see if I can find the link.

    Aww so sorry Sue, sounds awfull. Al glad to hear they will reduce your dose and good you have your opp appointment. I'm still waiting for mine, prob come through in a few weeks. 

    Good luck for Tuesday  Davia. So you have much planned this weekend, maybe things to keep your mind off the opp.

    I'm doing ok, was wide awake yesterday for a change and up at 4am with breakfast and steroids. Going for a walk in a mo, tomorrow the weather is going to be worse. No sore mouth whew and rash is getting better. Nose bleed is OK for now so overall a good day! 

     

    Hey Nat05

    Welcome to our group of Triple negative thrives! As you can see we are all in different stages of our treatment and getting there. It does Deff help chatting to each other about the good, bad and bleugh! So feel free to message any time you want to say hi or rant! I probably will when my steroid high wears off. 

    Have you had a lumpactomy or mascetomy already? Mine is in my lymph nodes so ill have those taken out too. I have 2 more chemo then I'll see the consultant about the opp and radiotherapy. 

    Ah and whatever you do don't Google, I scared myself shirtless! Stick to the official sites, breast cancer now, macmillan and download the Becca app.

    Big hugs ladies xxx

  • Sue, I feel exactly the same. Everyone says you must be thrilled/relieved/overjoyed but actually I'm just scared.