New to Cancer - TNBC

FormerMember
FormerMember
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Hello!

I am 43 + have just been diagnosed with TNBC  :( I have 2 enlarged lymph nodes which have been biopsied - 1 is benign + the larger 1 has a large blood vessel running through it so results were inconclusive so I've had another needle test this morning + desperately praying that that too is negative.  Another week to wait for results!  

I am also trying to make the decision as to whether to go with the lumpectomy first or chemotherapy as trying to harvest some eggs (IVF) but the oncologist mentioned that if they remove the tumour first, they won't be able to tell how effective the chemotherapy has been for future prognosis.  Has anyone else been told this or had experience with this?  I just feel it was a bit vague + I now have to base my IVF treatment decision on this.   As this is an aggressive type of cancer by all accounts with a high chance of recurrence, it seems that being able to ascertain the effectiveness of the treatment is of utmost importance!  Any thoughts greatly welcomed + appreciated.

I am absolutely petrified + am really struggling to find any positivity in the situation at the moment! I literally cannot stop crying!

Any help/advice on how to cope/stay positive would be amazing!

Thanks so much!

Px

  • Hi  and a very warm welcome to the online community

    I'm very sorry to read that you've been diagnosed with TNBC and, although I didn't have the same type of cancer as you, I do understand what a worrying time this will be for you. It's also difficult when you have to make decisions on what type of treatment to have.

    I'm hoping that by replying to you and effectively 'bumping' your post back to the top of the discussions list some other ladies might be able to come and tell you about their experiences.

    How you're feeling at the moment is perfectly natural but you might find it helpful to have a look through this information from Macmillan about just being diagnosed and understanding your emotions. It gives hints and tips on how to cope and when to seek help if you find that how you're feeling is having a negative effect on your life.

    Waiting for results is also a horrible time and you might find this on how to ease worry when waiting for results helpful to have a look through.

    All the best

    x

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     "Never regret a day in your life, good days give you happiness, bad days give you experience"

  • FormerMember
    FormerMember

    Hi Pippypop, just read your post & your situation sounds similar to mine, I am 42, was diagnosed with stage 2b TNBC Grade 3, 1 of my lumpy,ph nodes was affected.

    i was given surgery first- my surgeon said that in normal (pre-COVID) times they would have given chemo first but they didn’t want to risk there being any delays to my treatment so he said they would do surgery first, so I wasn’t given an option, but to be honest I was so petrified I just wanted it out ASAP. I had breast conserving surgery & full node clearance on 27.10.20.  I started me chemo last Friday..

    I agree it does seem scary doing it this way as we won’t know if the chemo is effective Cold sweat
    have you made any decisions yet? 
    I am also struggling massively to cope and deal with things mentally as TNBC just makes for grim reading.  I have only started my treatment and the thing I am most petrified about already is a recurrence. It’s just awful, and the more you read the harder it is. I am seriously considering counselling.

    i do hope you are ok, feel free to contact me to chat any time Kissing heart

  • FormerMember
    FormerMember in reply to FormerMember

    sorry should have tagged you properly in my reply

  • FormerMember
    FormerMember in reply to FormerMember

    Thanks so much for your reply Relaxed️ Definitely sounds like our situations are very similar.

    I decided to go ahead with the chemo first + pop the extended family dream on hold for the moment - I found out that it had spread to my lymph nodes but unsure at the moment as to how many.  I have a CT scan booked on 21st Dec which I am dreading as I have convinced myself that I am riddled with cancer + am so so scared.  Did you have a CT?  If so, how long did you have to wait for the results?

    With Christmas looming I am not starting chemo until 30th December - the wait is the worst!! I can also really feel the tumour at the moment + it is a little sore so I have also convinced myself that it is growing!  It's a nightmare the whole thing.  I need to start being positive as I really think that will help me fight this!!!  I need to put all my energies in getting through it for my family + myself.

    I will also be having full node clearance at the end of the treatment + breast-conserving surgery.  How was the node clearance?  Was it then that they confirmed you only had it in 1 node?  How was your first chemo?  Hope you are feeling ok with it Heart

    I still cry daily but someone said that was ok + to be kind to myself +  that I will feel better once treatment starts as then I will like I have some control.  I am staying away from Dr Google + counselling sounds like a great idea - I could definitely do with talking to someone for sure.

    Look forward to hearing back from you + sending you lots of love xxx

  • FormerMember
    FormerMember in reply to FormerMember

    Hi 

    hope today is a good day (you know what I mean!!)

    I am glad to hear you now have a plan in place-think it definitely helps a bit. Great that you have a CT scan booked.... I enquired but was told no it’s not normal process to offer one, dr said if I had had spread to say 3+ nodes then they would do it. I think this varies greatly between regions, where are u in the uk? I am in N Ireland.

    So the night I was diagnosed privately at one stop breast clinic, they were convinced it was a cyst, went in to see ultrasound dr & as soon as she scanned over she said oh no it’s not a cyst, she piDisappointed relieveded up 1 enlarged lymph node so they did a lump biopsy & some needle biopsy into the enlarged node, then were able to tell me half hour later there were cancer cells in both lump & 1 node. They bookeDisappointed relievedme in for lumpectomy & full node clearance for a couple of weeks later, I then had over 2 week wait for the results.... horrendous and like you I had convinced myself I was completely riddled Disappointed relieved. Of the 13 nodes they cleared away just the 1 thank god was cancerous. So no I was told I didn’t need a scan. My oncologist gave me a token chest X-ray Rolling eyesjust before 1st chemo. But sure it could be in my brain & bones for all I know!!!! Sounds dramatic but you know what I mean!!

    so I presume your ct scan will show up if you have any more node involvement? 
    what date did you have your biopsy? As i am sure that means your lump feels tender? I was told after mine not to be alarmed if it was sore or bigger as it was down to it being tampered with so your body produces cells to fight it and so may get bigger.

    i am delighted you have your chemo start date, try & enjoy your Christmas as much as you can before you start (easier said than done I know). My second one is going in on Christmas Eve Sobso it’s going to be a very low key sofa bound few days for me.

    the node clearance was ok.....I have cording which I a, attending physio for, bit annoying and I still haven’t attempted to drive 6 weeks later....,,no one told me I wouldn’t be able to do this!, I Grimacingought I was going to be flying around doing the school runs a few days later Grimacing.

    first chemo I was sick few times that first night then just horrible nausea, fatigue, couldn’t sleep & a complete and utter emotional mess.  Don’t be alarmed by this as apparently it messes with youRolling eyeshormones, and the steroids & antisickness tablets they give you keep u awake & can constipate you Rolling eyes.

    i know what you mean about the positivity......It is very very hard to stay positive but guess we have no other option.  How old are your kids if you don’t mind me asking? Hope they are taking it ok. Mine are 8 &6

    big hugs

    xxxx 

  • FormerMember
    FormerMember in reply to FormerMember

    Hey 

    How are you doing lovely?  

    Happy Christmas + Happy new year!
    I am so sorry for my late reply - needed to switch off cancer focus for a while over Christmas before heading into treatment.  How did your Christmas Eve treatment go?  How are you feeling?

    I had the CT scan on 21st Dec but I am still waiting for my results - ugh!  Hopefully, I will get them when I meet the oncologist again on 13th Jan Fingers crossed Trying to remain hopeful that because they found the bc early, chances of them finding an ominous tumour lurking somewhere are slim Fingers crossedFingers crossedFingers crossed  Time will tell.

    I had my first chemo round of EC on 30th Dec - was horribly sick for the first night - 7 hours + no tablets helped!  But since then, I have felt pretty much ok other than a bit tired + VERY emotional - bursting into tears at the drop of a hat - ridiculous!

    My little boy is 5 - really looking forward to cancer + homeschooling Rofl  He seems to be ok at the moment but utterly outraged that he can't go to the playground as I have been told I need to shield for 21 weeks but at least with lockdown here in Berkshire, he's not missing out on anything else - feel so bad for him, little poppet!  How are yours getting on?

    Sending big love Heart

  • FormerMember
    FormerMember in reply to FormerMember

    Hi 

    lovely to hear from you I was thinking of you over Christmas Blushdo not be apologising....I haven’t been on here either and you don’t  get notifications Of messages.

    I really hope you got good news back about your CT scanFingers crossed tone1Pray tone2. Aw so sorry to hear you were so sick after your first chemo, it’s rotten isn’t it.  If you happen to be on Facebook there is a good (Well actually it’s not good as I really don’t want to be a part Of it!!!)group I have joined, it’s called Triple Negative Breast Cancer UK and Ireland (TNBC)Support.  It’s very informative, don’t get me wrong you see some sad stuff that you wish you hadn’t but it’s good reading about other people’s treatments, tips, advice etc.

    It was through the group that I saw someone mentioning a couple of different antisickness tablets, I was very sick after my first dose aswell so I asked for A drug called Emend and I was given this one hour before my chemo along with the steroids & antisickness that I received first time around and honestly it was a game changer, I wasn’t sick at all, now I did have a bit of nausea for the first week but it was manageable.

    When is your second treatment then? My Christmas Eve chemo was cancelled as my blood cells were low, I was gutted for about an hour but then realised I could enjoy a few glasses of Prosecco & my ChrJoytmas dinner!! But once Boxing Day was over I was just itching to get on with things. So I got it on NYE, went ok until I had to give my self an injection the following night Penfilgrastim in order tJoyboost my white blood cells.....well I woke up the next morning covered in an awful rash, had to go to the hospital, they assessed me for the day then sent me home then got up the next morning and I Joys head to toe covered in the most horrendous itchy rash......had to go back to the hospital and was admitted for a couple of days.  They pumped me full of steroids & antihistamine and I felt like a woman possessed!! That definitely set me back in getting over that round.

    I think it seems to be the steroids that really mess with your emotions, you saying you cried non stop....well I’m the same for the week after chemo. It’s just a big bloody horrible rollercoaster isCryt it. Cry

    Aw your little one just 5, bless, how is homeschooling going?We decided to send ours into school, my husbands job is classed as key worker and my eldest son has ASD and really needs structure & routine so when news broke about schools closing I was in hospital and completely panicked and spoke to the principal and she said to definitely send them in. Treatment is just too unpredictable and to be perfectly honest I don’t feel I have the strength to homeschool at the moment.

    i really hope you are coping ok with the schooling!

    Its all so hard isn’t it not being able to see people etc. Hard to think of better times in the middle of a pandemic.  I am dreaming of lying on a beach somewhere.

    Sending you lots of love & strength and definitely speak to your oncologist about getting some stronger anti sickness medication for your next cycle.

    chat soon

    Kelly xx