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

  • Hi Ladies,

    I'll find out if I need more chemo after i've seen the oncologist. The surgeon said that I would probably be offered more chemo as some studies show that it can help prevent a reacurrance. My husband said to me that it sounded like I would be offered a trial but I'm not sure about any of it. My head was all over the place when I saw the Surgeon not knowing what to expect. I don't think I will have the chemo if it's a trial but if it's tried and tested then I probably will. The Surgeon did say the chemo might be taken orally but the oncologist will discuss it with me.

    Mich and Davia, what surgery are you having? if it's a lumpectomy then the recovery is not that bad. I am still sore but besides that, all good. Just think, an op, radiotheraphy and then all done!! It feels surreal, very strange to be this far along the treatment plan. The hardest thing is getting your head around it all. I am struggling mentally, mostly because friends and family can't understand why i'm not jumping for joy.

    I hope everyone had a lovely weekend,

    Love to you all,

    Sue xx

  • Evening ladies

    Day 11 and I am starting to feel 'normal' and my taste is starting to return.

     I went on the look good course today and really enjoyed it, came away with a lovely goodie bag so i'm glad i pushed myself to go.

    Davia I hope it all went ok today, sending you lots of healing x

    Sue.Mich and Claire i hope you're all doing well, I am so grateful for this group as i love the positivity :)

    Sending hugs and best wishes

    Linda x

  • Thanks Linda

    Glad you enjoyed the look good feel better course.

    I am not feeling to bad, not much pain, hope that doesn't change, I had all the lymph nodes removed from my left arm pit, the team surgical  were lovely, and the nurses are lovely, really look after you. I will get results from op in two weeks at surgeon follow up appointment.

    Look after yourself ladies, hugs all round

  • Hey Davia, 

    Ah glad to hear it all went OK today and you are feeling alright. How long will u stay in hospital? 

    Glad to hear you are feeling more normal Linda.i had a zombie day yesterday and stayed in bed. Was good to get out today, I had my Look good workshop too! And you're right what a lovely bag of products, so chuffed and really enjoyed it.

     

    How u ladies doing otherwise? 

    Xx

  • Hi Mich

    They wanted to send me home the same day but I didn't feel comfortable with that as I was sick twice because of anaesthetic so stayed it last night, be going home today, I have a drain in but no more liquid has drained from the wound, and I'm very surprised at the amount of movement I have in arm, we will see if that continues, I have some numbness in underside of arm, but it all feels a lot better than I thought it would, so don't worry to much when it's your turn, they also give you strong pain killers.

    Hope your feeling a bit brighter today, 

    Keep well xxx

     

  • Hi Ladies,

    Mich and Linda, I'm glad you enjoyed the workshop. I was so impressed with the bag of goodies and all the make-up tips. I'm happy you are feeling better Linda, I'm sure it will continue. How are you feeling Mich?

    Davia, I'm glad you are doing well. You will feel better once you're home in familiar surroundings. It's really nerve racking waiting for the results, it was a long two weeks for me!!

    Take care Ladies

    xxx

  • Hi Ladies how you all doing?

    Mich you must be at the end of chemo by now, have they given you a date for op?

    I still have my drain in, it only stopped draining under 30ml last night, so they give you two days and see if it continues to reduce output before taking it out, I have had a nurse phone every day and come in every other day to look and change dressings. I do have numbness under arm and also in for arm, but they say that's normal and the for arm should get better in time, you get like prickling sensation and the numb area is sensative but nothing more. My energy after op has been rock bottom, and I must confess to feeling very low, but again the nurse said this happens, it's a side effect to anaesthetic, hopefully I will feel myself again soon. 

    Claire and Sue how are you doing after your ops? Have you started radio therapy yet? If so how is it? Hope your both feeling well xx

    Linda how is it all going? 

    Love to you all, keep well xxxx

     

  • Hey Davia,

    Been thinking of you ladies today, so thanks for the message and reminder :)  Sorry to hear you are uncomfortable at the mo Davia, sounds like they are keeping a good eye on you.  Have they given you exercises to do for your arm.  Its been a tough week fo rme too after the double combo!  Was so down and fatigued had to stay in bed for 2 days after i attended the workshop.  Started to feel better on Friday and not too bad this weekend.

    I started the 10 000 challenge with CR UK, to do the steps each day.  Did ok over the weekend, the hoovering did help haha!  Only on about 7 000 today but sure I'll make up for it later.  I need to have something for me to focus on as my mind is wandering a bit too much and I get morbid and all foggy brain, err more than usual!

    Its my last chemo this Friday, so off to my pre assessment tomorrow, fingers crossed.

    How you all doing ladies? Hope you managing ok , big hugs

    xxx

  • Hi ladies, been thinking of you all but been fairly hectic with moving back to the UK.

     

    Mich, last chemo, hooray! Sorry you felt so rough. Remind me what's next for you? Very impressed with your steps.

     

    Davia I have the numbness too and it feels a bit lumpy under there. I'm sorry you're so low but yes, definitely a side effect of GA. Did you know you were  having all the lymph nodes removed?

     

    Lindy, glad you enjoyed the course. How are you feeling now?

     

    Sue, no one has said anything to me about more chemo, I would also have felt gutted! Now slightly worried that it hasn't been suggested... Do you have a date for the appointment?

     

    I went up to the hospital yesterday and she's saying 4 weeks of RT, we've decided to do the lymph area as well as the breast. Going in on Thursday for the planning appointment and due to start treatment on 23rd but I want them to pull it forward slightly if possible. 23rd will be 6 1/2 weeks post op.

    Love to all xx

     

     

     

  • Nat, welcome and sorry to hear about your diagnosis. How did the surgery go? Have you had chemo?

     

    Sending love x

Reply Children
  • Hi, had the surgery last Thursday. 
    home now resting and recovering.

    Next meeting with consultant on the 20th. 
    They said that I will need chemo but not any detail yet. 
     

    Any hints on what to expect, welcome. 
     

    Hope everyone else is coping ok.

    Anastasia 

  • Hi Anastasia,

    I wish you a speedy recovery. Chemo is not nice but it is doable. Everyones experience is different so hopefully you will be able to tolerate it well. Drink loads of water, it really helps. Take books, magazines etc. as it is really boring.

    Stay strong,

    Sue xxx

  • Hi Anastasia 

    Welcome, I hope your recovering well from your op, as sue says, chemo effects us all differently, but the team really look after you and monitor you closely, listen to your body, was a good tip someone said to me, are you cold capping or going for the shave? , I went for the save, it felt quite liberating, I did buy two wigs but to be honest I hated wearing them, I much preferred scarves and hats, oh o e thing I did invest in a good thermometer just to keep eye on temperature and body cream, you may find your skin dries out. But it is doable, let us know when they give you a start date. All the best xxx

  • Ladies, everything hurts today! Joints, bones, back, lumpectomy area. Anyone else had this?

    x

  • Hi Claire,

    I'm very tender where the lumph nodes were removed, and feel very tired all the time. Strangely, I have difficulty sleeping. I was aching all over but since I started exercising I feel a lot better. 

    Love to all,

     

    Sue xx

  • Thanks Sue. I do think some of it is a general lack of moving my body!

     

    x

  • Hey ladies, 

    Ah sorry to hear you in pain Claire. Hope painkillers will work. Is the move all done for you? Hope u taking it easy

    Thanks Davia for the update, I'll find out more on the 10th and let you know. Can't remember sis you have another scan aftrt chemo? 

    The challenge is just for March so should be fine with opp as would imagine be after this. Only managed 6000 odd yesterday as the weather was awful! So may make up for it this weekend. 

    Last chemo at 2pm! Yay. Hope u don't stay there too long as its alway hectic on a Friday afternoon in the unit. Did bake a cake tho nom nom.

    Any more news in your treatment Sue? 

    Big hugs all around ladies xxx 

  • Claire I read on another site that after chemo you can get joint bone ache, maybe it's that, hope it clears quickly for you xxx

    Mitch, last chemo today, woop whoo,  hope your out of there quickly, bribe them, get me done quick and I'll give you cake lol xxx

    Sue, i hope the tiredness goes off, i find after doing anything, short walk, house work, I'm pooped and need a nap, xxx

    Had my drain out on Wednesday, it didn't hurt, I was expecting it to but it came out no trouble. It took me 8 days to get over the anaesthetic, I felt terrible, very low no energy at all, nurse said it can do this, but thankfully I'm feeling more myself today. I have been having horrid nightmares, anyone else have them? Had one last night, not related to me but it was really vivid and horrid, like horror movie, wired!

    surgeon app on Monday will know more about opp and when radiotherapy will be booked in, can't lie, I'm nervous, it's the "results" anxiety, 

    Keep well ladies xxxx

     

  • Hi Ladies,

    I'm just back from my Oncology appointment and am feeling really gutted. I am having to have 4 months of Capecitabine (Xeloda) which is an oral chemo and will start in about 3 weeks. The side effects sound horrendous. I will still need 4 weeks of radiotheraphy after that. The reason is that althought they said I was clear of cancer, I didn't get a total response which means there is a 20 - 30 % chance of the cancer returning. I haven't stopped crying since I got the news.

    Davia, how did you get on at your Surgeon's appointment?

    Mich, Any date yet for Surgery?

    Claire, how are you recovering?

    Linda, hope you're doing OK.

    Love to you all,

    Sue xx

  • Oh Sue I'm so sorry, what a kick in the teeth, that absolutely sucks. It's good that they're making sure they reduce the risk of it returning but absolutely gutting to have so much more treatment ahead of you. Sending love and hugs and channeling strength your way xx

     

    im ok, thanks. Ended up going to a&e Sunday as I suspected, correctly, that my wounds had become infected. Now on a course of penicillin. Have to see the doctor again before starting radiotherapy which is due to start 23 March.

     

    Davia, hope the appointment went well. I've definitely been having very vivid dreams since starting treatment.

     

    Mich, fabulous that that's the last chemo! How're you feeling? First part of the move is done, I'm at my parents til May. They'll look after my son whilst I go into London each day for rt. I move back to my house in May. Loving being back despite the weather.

     

    Anastasia, hope the recovery is going well. For the most part I didn't find chemo too bad, the last 3 sessions were a bit rough but the first 13 not bad. I didn't bother trying to keep my hair, once it started falling out my boyfriend shaved my head, I also went the headscarf route. I felt quite emotional on the ec chemo and very nauseous. The taxol gave me no side effects at all.

     

    Love to you all x