TNBC newly diagnosed

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Mariet
Mariet Member Posts: 12
edited November 2016 in Community news and events

I am a 66 widowed mother of two daughters and grandmother of 6, 3 beautiful girls and 3 very handsome boys who lives on the NSW South Coast.

My story is probably very similar to everyone on this site. Last month I found a lump in my breast, not the normal pea shape people tell you about but what felt like muscle to me. Went to the doctor and the next day she sent me for a barrage of tests and a meeting with a doctor who became my mastectomy and axillary clearance surgeon the following week. It was like a whirlwind, one that I had no control over yet I felt remarkably calm all throughout which scared the hell out of me.

I am diagnosed as Triple Negative, T3 N0 M0. WOW a whole new language to learn, one that I am slowly learning.

Now as time goes on and I have time to think, I am finding that I am getting scared over what I understand will be a very aggressive round of chemo. I have yet to meet my oncologist but my surgeon has told me that  is probably what I can expect as the tumor was very aggressive.

I would like to know if this is what is going to happen is there anything at all that I can do prior to chemo or during chemo that will help me.

 I would also like to meet others who are available to share their stories over a coffee in the Nowra area and surrounds.

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  • JaneyH
    JaneyH Member Posts: 13
    edited March 2015
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    Hi Mariet -  I am Jane and I have had a similiar diagnosis and treatment so far as you (matectomy and ax clearance). I have just done my first round of chemo and am coming up to my second. I found it really difficult at first, as I had a fairly strong reaction about 4 hours after chemo - with vomitting and diarrohea for about 6 hours.  So I think I felt really unwell for the first few days as a result of that.....just a constant nausea. My chemo nurse has assured me that the next round we will try a different combination of anti-nausea drugs and that they will likely be successful.

    But...around day 5 from chemo I started to feel alot better and each day has got steadily easier. I am diligent with my tooth brush and bi-carb mouth wash, and I am trying to drink a minimum of 2 litres of water a day. I rest alot, but have been able to get up every day and do what I need to around the house. The hospital I am at, did a fantastic chemo orientation session which helped alot as I felt well informed.

    I am living in Sydney for my treatment so not close to Nowra, but dont hesitate to contact me anytime, as I am a little ahead of you. Good luck with everything.

    Jane

  • Mariet
    Mariet Member Posts: 12
    edited March 2015
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    Hi Jane, Thanks for the quick response.  I will take you up on your offer of staying in touch. I think it always helps when you have more heads than one.

    I think I would have started chemo by now but I got an infection in the lateral drain and ended up back in emergency with another operation to rid my body of the infection. Really felt like I had to start all over again as they put another two drains in and I was admitted for another week.

    At times I do come to Sydney as I have a daughter living there so one day we may be able to catch up.

    I wish you all the best in your treatment and I please stay in touch and let me know how you are going and I will do the same.

    Kindest regards to you.........Marie

  • JaneyH
    JaneyH Member Posts: 13
    edited March 2015
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    Thanks Bel.  I know you are absolutely right, everyone's chemo is different.  I am on 3 chemo drugs and am amazed that other women I have talked to are on completely different drugs....but obviously it is pathology etc. Thanks so much for the advice, it is such a huge help and makes all the difference.

    Jane

  • Mariet
    Mariet Member Posts: 12
    edited March 2015
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    Thanks Bel, I took your advise and read through "how to deal with chemo".

    It certainly has opened my eyes to possibilities both good and bad.

    I have made a word document with all of the great tips given so that I can work on having things ready if that is my path.

    Marie

  • Kezzian
    Kezzian Member Posts: 6
    edited March 2015
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    Would be keen to grab that coffee at some stage.Love Kerry  xx
  • Mariet
    Mariet Member Posts: 12
    edited March 2015
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    Hi Kerry, would also like to catch up at some stage.  The next few weeks will be pretty filled with school holidays and grandchildren coming to stay. I am also meeting with my Oncologist next Monday. Both of my daughters coming with me. Three heads are better than one eh. Hope your having a good day today.

    Marie  

  • Debstar
    Debstar Member Posts: 8
    edited March 2015
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    hi Mariot, I am new to the group TNBC and am keen to talk to people within a reasonable travel distance I am in Wollongong area and would be keen to meet for coffee with you at some stage. Still having chemo at the moment followed by radiotherepy, stage 1 grade 3 lumpectomy followed by another surgery after heavy bleeding to insert a drain and clean out wound. Diognosed this year June 2013. Deb

     

  • Debstar
    Debstar Member Posts: 8
    edited March 2015
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    hi Mariot, I am new to the group TNBC and am keen to talk to people within a reasonable travel distance I am in Wollongong area and would be keen to meet for coffee with you at some stage. Still having chemo at the moment followed by radiotherepy, stage 1 grade 3 lumpectomy followed by another surgery after heavy bleeding to insert a drain and clean out wound. Diognosed this year June 2013. Deb

     

  • Mariet
    Mariet Member Posts: 12
    edited March 2015
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    Hi Deb, I have just finished my 4th round of AC today. Surprisingly my bloods are all great and I have just experienced a little nausea for the first few days. I do make sure that I drink 3 litres of water for two days after the treatment. I try to eat healthy but I am chasing the taste buds lack of satisfaction.  I have a passion for Zinger Burgers. I can taste them. Since I live a 40km round trip I probably get to satisfy my taste buds once a week.

    My next lot of treatment will be 12 weekly rounds of Paclitaxal. I am hoping that I cope with this lot as well as the first lot. Time will tell.

    I would lke to catch up with you before I start the Taxal on 14th Oct so if you are free on Monday 30th Tuesday 1st or Wednesday next week we could get together at Kiama. That's about half way. So if you know any coffee shops you can be the leader. Wink Wink

    I have joined a support group in the Shoalhaven and it is great to chat with different like women, you will be surprised at the number of TNBC women there are in the groups.  I went in thinking that I was alone and I would say that I met at least 6 on my first day and after chatting with a couple of them, I found out that everyones treatment is different.

    Why don't you check out the groups on the website and see if there is a group in the Illawarra or Wollongong area. All you have to do is put in your postcode from recollection.

    I also had an infection during the first week after having one of the drains removed and going home only to find myself back in A&E halucinating with extremely high temps and having to have another op to cleanout the infection and insert two new drains.  FAR OUT didn't want that as they hurt more than the mastectomy as I am sure you would already know.  

    Look forward to meeting you...............Marie

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