Triple Negative diagnosis

AnnaspannaAnnaspanna AdelaideMember Posts: 8

I was given the news of triple negative breast cancer yesterday. My tumour was successfully removed with clear margins (1.1cm size tumor), however one lymph was affected (result of sentinel node biopsy).  Going back to hospital next week for further axillary lymph surgery.

It's been a hellish fortnight since my GP referred me for an ultra sound 'to play it safe' when she felt my breast lump.  My body CT scan and bone density scan are both clear.  

Just wanting to hear some positive stories from anyone out there who has had a similar diagnosis....reading articles on line has filled me with doom and gloom.  

Are there vitamin supplements I should consider taking?  I've read online that 'luteolin' is beneficial with this type of cancer? does anyone have any suggestions for vitamins etc??   

Thank you. 

Comments

  • Michelle_RMichelle_R Gold Coast QldMember Posts: 894
    Hello Anna, there are plenty of positive outcomes for tnbc - everyone is different and the on-line stories of 'doom and gloom' certainly don't apply to us all.  Next month it will be 6 years since I was diagnosed, and I am in good health, fit, and leading a completely normal life.  That first year is so busy - tests and surgeries and scans and rads - it just disappears as you take one day at a time.  I suggest you get a large file, and keep all your results, pathology reports, tests and appointments, and also costs (for tax rebates) - al your information in one place, as there will be a lot of it!.. Have you ordered your My Journey kit from this site yet?  It has so many answers, and so much good advice - it was my go-to that first year!  Come on-line whenever you need to chat or vent or ask questions - there will always be someone here for you.  Take care, Michelle x  PS  My oncologist told me that feeding the good cells with supplements also feeds the bad cells, so don't go overboard.
  • onemargieonemargie queenslandMember Posts: 1,241
    Hi there @Annaspanna (cool name by the way).sorry you’ve had to join our crew on here.  I was diagnosed may 2016 aged 43 with triple negative stage 2a grade 3 (3 cm tumorj  bc had left boob off and 8 nodes taken which were all clear. All scans clear too. Had the boob off and nodes taken at the same time. Had 8 rounds of chemo two weeks apart didn’t have to have radiation as I chose to have a mastectomy. Took the other boob off after chemo as I trusted my guts and knew that was the right decision for me. I finished chemo oct 2016 and feel great now physically and have for some time.  I also had the gene test which came back negative. Still on the wait list for my recon though should of had that done at the same time as surgery if I knew the wait was going to be so bloody long (I love hindsight). But sounds like you’re having breast conserving surgey so you are different to me.  

    Its all really daunting at the start that’s for sure and I felt the same way as you but once you have a plan of attack it does make it a bit easier. Whatever you do don’t google anything. Triple neg responds really well to chemo if you have to have it and my prognosis like @Michelle_R is a positive one and she’s given you some good advice too. 

     There is support out there for you I live brisbane north side and can help you with that if you’re around me. But wherever you are rest assured one of us one here will guide you through this time in your life. Stay positive take each day as it comes. Trust in your team, trust your guts too, talk to your breast care nurse as needed, take help from those who offer it, trust me you soon find out who your true friends are and people don’t offer if they don’t want too and there might be a few of those too, so don’t turn the good ones away and learn to delegate where needed. There is also the BCNA help line you can call for advice they are a lovely bunch. 

    be kind to yourself,  do you have a supportive partner and family ? I hope so and I’ve never heard of the supplement you have mentioned but I would advise to chat to your oncologist before you take it. Some of those types of things can be a bit deceiving and very costly something you don’t need on top of everything else and  the only thing I take now is a vitamin d/calcium tablet and us with triple eg have the added bonus of not having to take post treatment meds like hormone blockers etc. PM me if you’d ever like to chat. Hang in there love it can be a challenge but you will find your inner warrior eve though you might not feel like it now but believe me you can come out the other side. Biggest hug. Margie xx
  • duxx1234duxx1234 BrisbaneMember Posts: 116
    Hello @Annaspanna I was diagnosed with Stage 2a Grade 3 TNBC at the end of November 2017.  Tumour was 19mm. Had lumpectomy and Sentinel node and one other was involved - 2 out of 3 taken.  Went back to surgery a couple of weeks later for axillary clearance (22 nodes all up)and another two nodes had micro deposits.  I ve recovered very well from both surgeries and started my treatment on 16th January.  I’ve had three doses of AC chemo, three weekly,(one more of those left) and then have 12 weekly doses of Taxol followed by 30 doses of radiation, so still a way to go for me. It all is soo daunting at the beginning, but once you get treatment started  you will be surprised at how quickly the weeks pass.  Good luck with your next surgery and,  as people constantly tell you, and it’s so true, “one day at a time” and you will get there. 
  • AnnaspannaAnnaspanna AdelaideMember Posts: 8

    I feel better reading your positive posts - thank you for taking the time to type and share.  I'm here in Adelaide. 

    I've had a bad day today, very weepy...hubby took me down this morning to speak with my Breast Nurse.  As I'm sure you all know, Breast Nurses are a special breed:  caring, kind & patient.  Her talk with us has made me feel a little better. 

    The uncertainty of what may follow on from next week's surgery is playing on my mind - just praying and hoping that further lymph's are all clear.   

    I will get together a file (good idea), thanks Michelle_R      

    Thank you duxx1234 'One day at a time'...I will remember that.  


  • Rosie_BCNARosie_BCNA Administrator, Staff, Member, Moderator Posts: 202
    @Annaspanna My name is Rosie and I'm one of the Cancer Nurses working on the BCNA Helpline.We also moderate the online network discussion. You've already had some great advice from people are speaking from experience and truly know what you are going through. It also sounds like your Breast Care Nurse will be a great support. With regard to your question about taking supplements I would suggest you look at the US based Memorial Sloan Kettering Cancer Centre website about Herbs  https://www.mskcc.org/cancer-care/diagnosis-treatment/symptom-management/integrative-medicine/herbs
    You can look up the latest evidence based information about all sorts of supplements and treatments you might hear of and find out what is known about how they work in cancer. BCNA also has a fact sheet on the website called Beware Dr Google that you can order or download for reliable sources of information  https://www.bcna.org.au/understanding-breast-cancer/resources/order-bcna-resources/
    All the best, Rosie   
  • AnnaspannaAnnaspanna AdelaideMember Posts: 8
    Thank you Rosie_BCNA...much appreciated. 
  • primekprimek Broken HillMember Posts: 5,188
  • smokie08smokie08 AdelaideMember Posts: 154
    Hi Annaspanna

    Sorry you had to join the forum but all the ladies on here are brilliant!  I am also in Adelaide and was diagnosed with TNBC stage 2B grade 3 in April 2017.  My "journey" is a bit different from yours.  I had Neoadjuvant Chemo as "Boris" ( that's what I called the lump) was between 3-4 cm and had spread to the lymphs.  My chemo was given dose dense A/C ( given every 2 weeks) Then 12 weeks pacletaxel with the added bonus! of carboplaitin chucked in every 3 weeks form week 4 of the weekly dose.  Then surgery wide local excision and aux clearance, then Rads for 6 weeks.  The past year has been a whirlwind but like others have said you will get through it, it's just such a shock to start with. If you ever feel like talking please feel free to PM me.

    Take care and big virtual hugs X <3:)
  • SisterSister Adelaide Hills, SAMember Posts: 4,428
    Hi @Annaspanna Try to stay off Dr Google - it's depressing and quite probably irrelevant a lot of the time.  I'm also an Adelaidean but not TNBC.  I had my Breastscreen recall on 5 Dec 17, partial with sentinel removal on 21 Dec, and back for mastectomy with axillary on 8 Jan.  I've now on a chemo regime, 4 x 3 weekly AC (halfway through) followed by 12 x weekly taxol, then it'll be rads.  No-one knows for sure what their own experience will be.  My surgeon has told me that as far as is possible to know, the cancer is gone - the rest of the treatment is because I'm young (ha ha - 54) and as the nodes were involved, there could be floaters.  All you can really do is listen to your medical team and what they tell YOU because it won't necessarily be the same as what someone else will be told.  And, of course, come online here and you will get lot's of info and support!
  • SoldierCrabSoldierCrab Bathurst NSW Member Posts: 3,234
    hi @Annaspanna
    Wanted to share I am now over 5.5yrs since diagnosis of TNBC  I had bilateral mastectomy and chemo then rads I am now cancer free and reclaiming my life... 
    Take it one day at a time.

    Below are a couple of links to help you find your way around the forum and also how to find a breast care nurse and how to order a MY journey Kit if you haven't got one yet. 

    It can be a a whirlwind when we first get a diagnosed.... Breathe and take it one step at a time. 

    The what and how thread.

    http://onlinenetwork.bcna.org.au/discussion/14879/the-what-and-how-thread/p1 

    Breast Care Nurses

    https://www.mcgrathfoundation.com.au/OurMission/OurNurses/FindANurse.aspx 

    My Journey Kits and other resources. 

    https://www.bcna.org.au/resources/

    BCNA Helpline 1800 500 258

    If you have any questions, concerns or require any further information or support please call 1800 500 258.  The Helpline is open Monday, Wednesday and Friday from 9 am till 5 pm EST and Tuesday and Thursday from 9 am till 9 pm EST.

     


    You will get through this .... just take it one step at a time.... come on and ask anything nothing is wrong to ask on here and if you need to vent rang cry we get it ... 


    hugs 

    Soldier Crab

  • MollygirlMollygirl Brisbane Member Posts: 213
    edited March 2018
    Dear @Annaspanna, I'm so sorry you've had to join this club, but welcome and you will get plenty of support here. I'm also TNBC, almost 12 months. Lumpectomy and nodes out, chemo then bilateral mastectomies. 
    The beginning of this journey is a shocker - you will feel scared and completely overwhelmed. That is normal. You'll be sad and cry. That is normal. You may feel despair and life has gone out of control. That is normal. Please give yourself permission to feel sad etc if you need to. We've all been there in that whirlwind of craziness. Lean on your medical team and breast care nurse, they know what they are doing and your nurse has a wealth of experience and information. 
    It will feel like a long road ahead of you - but - It will come to an end before you know it. Try not to look too far ahead. It's daunting. 
    As far as supplements etc discuss with your oncologist before you start anything. Just focus for the mo on being gentle with yourself - eat well, keep well hydrated and rest when you need it. Gentle exercise like walking will help you get through. 
    Come on here with questions or for a vent. We are here for you. 
    Biggest gentle hugs xx
  • Cynth6Cynth6 Member Posts: 189
    Hi @Annaspanna sorry to hear about your diagnosis. I am now 6 months post chemo and I am cancer free. I was also a triple negative girl with a lesion about 3.5cm found in April 2017. I did chemo first and then surgery. The good thing about us triple  neg ladies is that usually we respond really well to chemo. Of course in my case I didn’t respond well to it and I know that’s not always the case for everyone unfortunately. 

    You’re still in the very early stages of diagnosis and this is the hardest part as you begin to process it. I hope you have a lot of support around you and try to stay positive (I know that sounds ridiculous) as there are alot of treatment options and research into Breast cancer. 

    Wishing you all the best with what comes. Xo
  • Spiv1803Spiv1803 Member Posts: 126
    Oh no cynth6, what now for you since you didn't respond well to chemo?
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