JUST DIAGNOSED TN - Scared to death

Cathytoo
Cathytoo Member Posts: 667
edited August 2016 in Triple-Negative Breast Cancer

Just diagnosed:

DCIS with invasive cells.  So, basically a mixed tumor.  2.5 Grade 3  Triple negative.

Lumpectomy was good clean margins. 0/3 lymph nodes.

Doctor says excellent prognosis because of lumpectomy results.  But, I know the risks of recurrence no matter what.

I'm 76 with not ONE health issue.  Don't take ONE pill.  I'm healthy, active and feel 20 years younger.

Can anyone offer any encouragement?


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  • JAN69
    JAN69 Member Posts: 947
    edited December 2015

    Cathy, I can offer encouragement. In 4 weeks I will celebrate 5 years since diagnosis. FIVE YEARS!!!! I'm triple negative, 6/12 positive nodes, had modified radical, had fully loaded chemo and rads. I wasn't sure if I'd recover, or if I wanted. But I'm alive and kicking. I know I aged quickly and don't expect I'll get all my energy back, but, wow, life is still good. And I'm 73 years old.

    Sorry you have to deal with this, but I'm so glad you found us. Please keep in touch and let the members of this thread support you as you work your way thru treatment and beyond. Jan

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  • Cathytoo
    Cathytoo Member Posts: 667
    edited December 2015

    Thanks, so much, Jan for such an encouraging response.  I'm trying so hard to be positive but find that, even if I go about my busy days, I Google every chance I get...even in the middle of the night.  I don't expect I'll get heavy chemo.  But, I hope I can be like you five years from now.

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  • maryna8
    maryna8 Member Posts: 1,810
    edited December 2015

    HI, Cathy

    That would be great if you didn't have to have heavy chemo, I can't speak to that.

    But there is hope! Remember there are more people who survive than don't, and you just might as well be one of them. I am going on 2 years since diagnosis, I am 63. I can't say I'm in great shape after the treatment, but I am working on it. And slowly getting better, I think.

    Best wishes through your journey, there are a lot of us out here wishing you well.

    If you like, come over to the "calling all triple-negative in the UK" thread. I am not from UK, I am American but I have found friends over there and Sylvia, who started the thread, is in her early 70's and is over 10-years survival. A very wise woman.

    Talk to you later, best wishes

    Mary


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  • Cathytoo
    Cathytoo Member Posts: 667
    edited December 2015

    Thanks, Mary, for your lovely response.

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  • sylviaexmouthuk
    sylviaexmouthuk Member Posts: 7,847
    edited December 2015

    Hello Cathy,

    I am posting to give you encouragement and support. Just be positive about everything. I am 73 and a more than ten year survivor. Like you, I avoid all pills and medication and try to make my food my medicine. Please come and join our thread.

    Take care and tell yourself you are going to be fine.

    Fond thoughts.

    Sylvia xxxx

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  • galtgulch
    galtgulch Member Posts: 1
    edited January 2016

    Cathy,

    The good thing about triple negative is that it is most susceptible to chemotherapy!

    Best wishes.

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  • Moderators
    Moderators Member Posts: 25,912
    edited January 2016

    Dear galtgulch, Thank you for posting and welcome to the community. We look forward to seeing you on the boards and learning more about you. The Mods

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  • barnowl
    barnowl Member Posts: 5
    edited July 2016

    Thank you for saying it again. I'm struggling with the realities of all of this - diagnosed in March but find (as I check my habitual blocking mechanisms) that I'm just coming to grips with the realities of what I'm dealing with now.....I did the 8 week thing with the Red stuff, and now am 5 sessions into the 12 week series, before an MRI to see if we are ready to go for surgery. I haven't been talking with anyone about it - just couldn't/wouldn't. Figured out yesterday and today that that is not a healthy thing to be doing - so I got signed on here this morning. Thank you again......

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  • BarredOwl
    BarredOwl Member Posts: 2,433
    edited July 2016

    Hi barnowl:

    Welcome from another owl. You might want to join one of the chemotherapy threads to meet some people. Those threads are quite active. It doesn't really matter exactly what date you started chemo -- no strict inclusion criteria here. Here's the June 2016 thread:

    https://community.breastcancer.org/forum/69/topics/844552?page=38#idx_1121

    BarredOwl

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  • Kathseward
    Kathseward Member Posts: 379
    edited July 2016

    Ive just been diagnosed with an11mm stage 11 triple neg with no lymph or auxilla involvement. The lump has neeb removed with good margins and my oncologist says there is a 90% chance that it wont recur but I am paralysed with fear! Im making my familys life hell and I don't want to do that! awaiting chemo and radio What can I do?


    cheers


    Kath

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  • 4everStrong
    4everStrong Member Posts: 118
    edited July 2016

    Kath, you can believe in the treatment, believe that it will cure you.. accept that you have cancer and that you are gonna win this fight. You can joke about it and put all your energy to have good vibes!! and on top of this have many many pleasurable moments.. your body needs the happy hormone right now!

    stay strong

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  • JJ62
    JJ62 Member Posts: 65
    edited July 2016

    Kathseward- BREATH- it all gets better with a plan. I am 6 years out and doing great. There is so much support and information on the discussion boards here. Look in the triple negative forum for stories and information. There is so much good advise here.


    Barnowl- welcome to the group no one wanted to join. You are not alone.

    Best wishes,

    Jody

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  • Kathseward
    Kathseward Member Posts: 379
    edited July 2016

    thank you that helped so much! Sometimes the fear is just paralysing. I need to be more informed about what type of chemo is best . I know Im having 6 months plus 5 weeks radio but are parps recommended after that? also what follow up is normally recommended after treatment


    cheers


    Kath

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  • Meow13
    Meow13 Member Posts: 4,859
    edited July 2016

    Kathseward, the fear is the worst. I am really scared tonight. Biopsy tomorrow.

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  • Kathseward
    Kathseward Member Posts: 379
    edited July 2016

    Its awful isn't it? tried to explain to my husband why I was so scared with a good diagnosis and h e just cant understand. Im get a referral to a psychologist to help me through this crap! just need to start breathing and put one foot in front of the other. Tough work isn't it? Big hugs

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  • mamalee3
    mamalee3 Member Posts: 2
    edited July 2016

    Hi, this is my first reply, my husband found this sight for me. Im new to this whole TNBC, I dont really know a lot about all the abbreviations or anything but it will be great to have others to talk to, I've shared the info with only my family and a few close friends. I was diagnosed with TNBC back in May it was my 52nd birthday gift. I found a lump myself in April (which my GYN in Dec. and a Jan. mamo missed) I was sent for a new mamo and ultrasound, then to my breast surgeon. She did a biopsy and thats when it came back positive. My lump came back under 2 cm and I had a lumpectomy and 5 lymphnodes removed June 21st, my tumor had clear margines and no lymph nodes were affected. My diagnosis is Stage 1a with a T1c tumor. I had no idea how long it would take from the time your diagnosed until your surgery until you see your oncologists (which is tomorrow) which is why Im probably filled with anxiety again. I just dont know what to do. some people are saying I'll only need radiation, based on everything I've read on TNBC I think I'll probably need radiaiton and chemo but I dont know. Still there are others who think I should seek out alternative medicines. I have tried to stay as positive as possible under the circumstances and I dont want to upset anyone, I know there are poeple worse off than me, but sometimes they dont understand how scary this is and that there are no garentees.

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  • Meow13
    Meow13 Member Posts: 4,859
    edited July 2016

    I would assume if your general health is good they will want to do chemo. Radiation is almost always recommended for lumpectomy.

    Don't forget to ask if you are a candidate for savi, internal radiation. Less damage, also others have used cold caps to save hair, ice for nails and mouth sores. They have medicines to ease nausea and other unpleasant stuff.

    I had lorazapam to help me relax and sleep.

    Remember it is your choice on treatment ask your mo treatment options.

    One positive about TN is that after 5 years risk of recurrence goes way down.

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  • mamalee3
    mamalee3 Member Posts: 2
    edited July 2016

    thanks for all the info, drs say I will need doxorubicin/cyclophsphamids every 2 wks for 8 wks then paclitaxel once a week for 12 wks, then radiation so I'm in for quite a journey but i have a pretty good support system and all of you ladies here really give me lots of hope, thanks for everything and good luck to you.

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  • Kathseward
    Kathseward Member Posts: 379
    edited August 2016

    hi Cathy I had a lumpectomy in early June triple neg 9 mm with no lymph involvement grade 2 and I'm terrified. All the info on triple negs is so scary but this site has so many incredible survivors on it that it has been great to read. Start chemo on Friday for 6 months after that then rads. Very scared but one foot in front of the other!

    Cheers

    Jat

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  • Cathytoo
    Cathytoo Member Posts: 667
    edited August 2016

    Kathseward...sorry you had to find your way to this site. But, as you've already discovered, there is lots of wonderful support here for you. TN diagnosis knocks the wind out of you. Initially, after being told I was TN, I got into bed and pulled the covers over my head. After five minutes of hiding from reality I decided I didn't want to live one more minute in fear. Last Tuesday I finished my treatment plan of lumpectomy, chemo and radiation. Now, what happens is out of my hands. I've changed my eating habits which I hope will made a big difference in keeping a recurrence at bay. I am trying to live with less stress. And, I try to enjoy every day. Do I constantly think of breast cancer....unfortunately, yes. It's with me every day. My MO will not discuss statistics with me, except to say that I have not been given a death sentence. My RO told me I have an overwhelmingly high chance this will not recur. But, the truth is that no one knows. On this site you'll read stories of women who had large tumors with lymph node involvement. They are still here enjoying life and many years away from their initial diagnosis. Try to think positive...go forward with your treatment plan and then go forward living your life. I wish you the best. If you ever want to "talk" privately...just PM me.

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  • Kathseward
    Kathseward Member Posts: 379
    edited August 2016

    thanks for the support Cathy! It's just overwhelming some days! What really scares me is the minimal treatment available for recurrences and I should not be thinking that way as mine was a very good prognosis as well. Too many years as a nurse probably but I need to keep moving forward andlivingvlufe to the fulles

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  • Caligirl55
    Caligirl55 Member Posts: 486
    edited August 2016

    I was just diagnosed this June... Then it all became real when I met with the oncologist & breast surgeon.

    I start my chemo today and I'm scared for sure. I never wanted chemo but TN responds to it I guessthe best.

    Thank you ladies for all the support. I get so tired of trying to act like everything is alright when inside I want to cry and cry I've done a lot of lately.

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  • VLH
    VLH Member Posts: 1,258
    edited August 2016

    Caligurl55, I feel pressured to be the cheerful warrior while feeling devastated. It's easier to avoid people than to have to maintain the façade. I hope all goes smoothly for you.

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  • Moderators
    Moderators Member Posts: 25,912
    edited August 2016

    Glad you found us here Caligirl55. Here you can be whatever you need to be. No façades necessary. We're all here for you!


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