The Foxs Lady

the Foxs lady
the Foxs lady Member Posts: 119 ✭
edited September 2013 in Day to day

I'm feeling very isolated as a TNBC in my area. 

To my knowledge there is one other (a recent diagnosis who is now going head long into intensive treatment).

I have physically met three survivors.

I know that there are more out there but I find women with hormonal breast cancer have no concept of TNBC.

Looking forward to connecting with others...........

I was diagnosed grade 3 stage 3.

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Comments

  • JaneyH
    JaneyH Member Posts: 13
    edited March 2015
    Hi my name is Jane and I have the same diagnosis as you stage 3 and grade 3. I have had a mastectomy am just about to finish chemo and start radiation. I am living in Sydney at the moment But am usually from Byron Bay...though I have been in Vietnam for 5 years.
    I know how scary it is.....and have had people say when I say breast cancer - "oh well your going to be fine then aren't you?"


    Would love a chat sometime.

    Jane
  • Lou_V
    Lou_V Member Posts: 8
    edited March 2015
    Unfortunately isolation can be a reality for many! Where are you from? I'm from Tamworth and understand completely the way you are feeling. I also was diagnosed Stage 3 12 months ago, so have finished all treatment options. Hang in there it will get easier. Happy to answer any questions you may have.
    Lou
  • Lou_V
    Lou_V Member Posts: 8
    edited March 2015
    Unfortunately isolation can be a reality for many! Where are you from? I'm from Tamworth and understand completely the way you are feeling. I also was diagnosed Stage 3 12 months ago, so have finished all treatment options. Hang in there it will get easier. Happy to answer any questions you may have.
    Lou
  • shereejoy
    shereejoy Member Posts: 120
    edited March 2015
    I have lived 1000kms from treatment so no the isolation well and yes triple negative for the last 3 years I have been fighting and now unfortunately secondary diagnosis at age 38. I too come across more hormonal ladies then not! But I guess trip neg is the minority
  • Jacky
    Jacky Member Posts: 6
    edited March 2015

    Hi, my name is Jacky and I was diagnosed with TNBC (Stage 2, Grade 3) 1st May this year. I'm half way through chemo after a lumpectomy, with radiation to follow. Wouldn't it be great if all TNBC patients were concentrated in one area?! Anyone around Albury-Wodonga?
    I feel pretty lucky that all treatment is available locally, cannot imagine how much harder it would be if you have to add a lot of travelling or being away from home like some of you describe.
    6 years ago my husband and I moved to Australia, from the Netherlands, and since we never got kids it's just him and me, no extended family. He's great, and we have friends around that are there for us too... although it's not the same as family.
    Dear Foxs Lady; we might not live close, but we are here! Only a couple of clicks away!

  • Jacky
    Jacky Member Posts: 6
    edited March 2015

    Hi, my name is Jacky and I was diagnosed with TNBC (Stage 2, Grade 3) 1st May this year. I'm half way through chemo after a lumpectomy, with radiation to follow. Wouldn't it be great if all TNBC patients were concentrated in one area?! Anyone around Albury-Wodonga?
    I feel pretty lucky that all treatment is available locally, cannot imagine how much harder it would be if you have to add a lot of travelling or being away from home like some of you describe.
    6 years ago my husband and I moved to Australia, from the Netherlands, and since we never got kids it's just him and me, no extended family. He's great, and we have friends around that are there for us too... although it's not the same as family.
    Dear Foxs Lady; we might not live close, but we are here! Only a couple of clicks away!

  • Linda K
    Linda K Member Posts: 32 ✭
    edited March 2015
    I too was diagnosed with stage 3 grade 3 TNBC. Lumpectomy with cancer in one lymph node.

    I'm yet to ask my oncologist what my chances are of the cancer returning.

    I think I'm afraid of what the answer may be.

    Does anybody know if the chances of the cancer returning are greater as we are not able to have hormone therapy??

    I've only just completed 2 of 6 chemo cycles. Radiation is to follow.

    Linda
  • Michelle_R
    Michelle_R Member Posts: 901 ✭
    edited March 2015

    I am so sorry you are feeling isolated.  Have been reading your blogs and see you are 1200 km from Brisbane, so I'm guessing north-west or north.  I am in SE Qld, so not much help geographically but we can chat online.

    I am TNBC too, diagnosed last April with Grade 2 Stage 3, and like you, found my lump in the shower, between mammograms and US's.  I had bilateral surgery, chemo & rads, and then a hysterectomy  - hopefully to cut the percentages of recurrence.  At present I am in remission and feeling normal apart from numb-ish toes and reduced energy levels.

    Apparently the best thing we can do for ourselves is diet and exercise - lots of vegetables and at least 30 mins a day workout, walking or gym.  I also do yoga because it is so relaxing, in a class set up by Anahata Healing.

    There is an enormous amount of research going into TNBC and they are getting some really good lab results.  Hopefully there will soon be trials.  All we can do is be as strong as we can to fight this in the meantime.

    We are all here for each other.  The pink sisterhood is just wonderful.  Keep posting so we know how you are going.  Big hug,

    Michelle xx

  • JaneyH
    JaneyH Member Posts: 13
    edited March 2015
    Hey Linda. I also have stage and grade 3 and l so know how scary it is. I didn't ask my doctor for ages and ages, but when I finally did he was enthusiastically positive. He says my chances are very very good.....and I am confident.

    I have had a mastectomy and am just about to do my 6th round of chemo. I will start radiation in 3 weeks. I have also had the genetic testing done and am waiting for results - but have decided to have the other breast off and a hysterectomy because of my BIg family history of cancer.
    Honey you will be fine. They are so good at treating this these days. I am really confident.
    Please don't hesitate to contact me any time.
  • Debstar
    Debstar Member Posts: 8
    edited March 2015

    I too was diognosed TN in June 2013, I live in the Wollongong area, dont know of any other TNBC. Have just completed TAC Chemo C4/6 with 6 weeks radiotherypy to follow. Mine was stage 1 grade 3, I was told that the Chemo would preserve my life I have just turned 54 this month and it has been rough, ended up in hospital after 1st round of chemo with nutrapina of the white cells, they dropped it back by 15%, OK until 3rd round which left me totally exhausted and with extra side effects of numbness in fingers and shortness of breath, this 4th round was dropped back by a further 10%. Feeling still tired and weak but not as bad as the previous one. So glad I found this group on the website, as most of my family is in denial. Hope to talk more with TNBC ladies. Deb

  • Debstar
    Debstar Member Posts: 8
    edited March 2015

    I too was diognosed TN in June 2013, I live in the Wollongong area, dont know of any other TNBC. Have just completed TAC Chemo C4/6 with 6 weeks radiotherypy to follow. Mine was stage 1 grade 3, I was told that the Chemo would preserve my life I have just turned 54 this month and it has been rough, ended up in hospital after 1st round of chemo with nutrapina of the white cells, they dropped it back by 15%, OK until 3rd round which left me totally exhausted and with extra side effects of numbness in fingers and shortness of breath, this 4th round was dropped back by a further 10%. Feeling still tired and weak but not as bad as the previous one. So glad I found this group on the website, as most of my family is in denial. Hope to talk more with TNBC ladies. Deb

  • dmed
    dmed Member Posts: 158 ✭
    edited March 2015
    I'm also TNBC had lumpectomy chemo radiation it's not an east road but doable . The TNBC freaked me a bit but the site on here is great and you can chat to all the ladies dealing with the same things there are quite a few of us so your not alone.wishing you all the best with your treatment love Deb
  • shereejoy
    shereejoy Member Posts: 120
    edited March 2015
    Oh my only wish was to have treatment post chemo. Left in limbo post treatment just waiting for it to come back :( and it did :( hopefully I am the exception though and most of you TNBC girls fair well xxxxxx
  • smead
    smead Member Posts: 20
    edited March 2015

    I was diagnosed 1/8/13 TNBC 5 days B4 my 53 birthday and 1 week after my newest granddaughter's birth. Regardless of TNBC diagnosis I'm still convinced my cancer was caused by extreme stress. Had lumpectomy and sentinel node biopsy - 9mm tumour with clear margins and 0 nodes and on 14/10 start 6 cycles over 18week chemo cycle followed by radiotherapy, somewhere in all this I have a confirmed trip to the UK - I aim to be on the plane. I live in Adelaide but haven't met any other TNBCs yet although 15-20% of all BC is TNBC. Research is going on all the time - knock Dr Google on the head as there is a lot of old info on the net and stick with trusted websites and ask lots of questions of your care team. Don't forget TBNC has 80% + survival rates. Take each day as it comes, there will be high and low days and be kind to yourself. Happy for you to email me as one TNBC newbie to another :)

  • Jewel
    Jewel Member Posts: 6
    edited March 2015

    Hi, I was diagnosed TN in May 2007, grade 3 stage 3, had lumpectomy, a wider excision then full mastectomy followed by chemo and radiation along with complementary therapies.  I had to travel away and stay for the duration of radiotherapy.  I've passed the magical 5 year milestone and try to remain positive but the reality is I still feel I live with uncertainty.  I've had 2 reconstructions.  I've also had genetic testing and don't have either of the known genes.  I also agree that stress is a major contributing factor.  I'm now 3/4 way through a Bachelor of Naturopathy so hope to help other people as well as myself to live healthy and well.  I'm coordinator of my local BC Support Group.  I'm happy to chat about my experience over these last 6 years.  All the best x

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