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  • Kathseward
    Kathseward Member Posts: 379
    edited July 2016

    I was diagnosed 2 weeks ago with a triple negative breast cancer that was picked up as a non palpable lump on mammogram that I have every year. It was 11 mm completely excised with clear margins and sentinel node biopsy clear. Two nodes were removed and were clear. I am awaiting chemo and radio and have been told that I have a 90% chance of non reoccurance. I should be thanking my lucky stars that it was picked up so early but instead all I do is cry and read all I can about the poor prognosis of triple negatives. I need to stop this and stop making my families life a misery but I just don't know how! Its like I'm paralysed with fear. Does anyone have any suggestions about how I can learn to live with this fear because its affecting everyone in my life now and I hate it! So very scared!!!!!!! Also has anyone up to date info about Triple negs treatment

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  • Cathytoo
    Cathytoo Member Posts: 667
    edited July 2016

    TNpotato...I hear you. TN is a rough ride. My experience is a bit different than yours. Hopefully, you will hear from other women on this great site who can relate to your situation and offer support. For the rest of us...justknow that we all care and wish you the best.

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  • LoveMyVizsla
    LoveMyVizsla Member Posts: 813
    edited July 2016

    Kathseward, you will feel more in control once you have a plan of action. I believe AC+T is the standard of care for TN, plus radiation.

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  • Shopgal2
    Shopgal2 Member Posts: 649
    edited July 2016

    Welcome kathseward! You will find a lot of good reliable info on our tn board. There is also the triple negative breast cancer foundation website that has info about tn. i would stay off of dr Google about tn. Been there and worried myself into a spin after doing that last year.

    As for the fear factor just take it one day at a time, one treatment at a time. You will get to the other side. There are a lot of long term survivors and they give us hope and comfort. We all deal with our fear but we live and go on thru our daily lives. I am 5 months past my final treatments and I have the same reoccurrence fear I had a year ago. But I don't let it take over. Last year cancer was the first and last thing I thought about every day. Today I can say that I think about it during the day but not all the time. And some days not at all. Took me some time to get here but the journey made me stronger. And kinder, more patient, and wiser. In the beginning I couldn't stop thinking about cancer and was not sleeping. I finally broke down and talked to my family doc who prescribed Xanax it really helped stop me stressing and relax. It stopped my spinning thoughts. Today I work out 2x a week, eat clean, and have lost 60 lbs since completing chemo in December last year. Same me, different me, but better. Like a lot of us.

    Know that we are all here for you. Hugs.

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  • TNpotato
    TNpotato Member Posts: 71
    edited July 2016

    Cathytoo - Thanks! :) I know I'll be better once I have a new plan, but I was so expecting a great outcome... It was a real sucker punch that the AC+T didn't do what I'd hoped!

    Kathyseward - I hear you about living with the fear! It can be overwhelming. Have you talked to your doctor about any anti-anxiety meds? Like Xanax? They started throwing prescriptions at me really fast the first few weeks when I said I was having trouble sleeping/focusing on anything else by BC! :)

    I actually found that for me, meditation and guided imagery/positive affirmations CDs help me "rein in" my brain when I feel overwhelmed better than meds (YMMV). I have asthma as well so the meditation helps me to keep from having stress induced attacks, gets my breathing back on track. Someone, somewhere on this site recommended "Meditation to Help You Fight Cancer" by Belleruth Naparstek (Amazon has it as a CD) and I fall asleep listening to that almost daily, it's a very positive way to gain control of your mind!

    My sister gave me a meditation CD when I was first diagnosed- "Guided Meditations for Calmness, Awareness & Love" by Bodhipaksa (Amazon too) - that I listen to almost every night too!

    And big hugs because I remember those first few weeks - hang in there!


    Edited to add: Kathyseward - one of the reasons why I was so upset about the AC+T for me is that for many, many TN patients it is VERY effective! I think my MO was really as surprised/disappointed as I was.

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  • Cathytoo
    Cathytoo Member Posts: 667
    edited July 2016

    TNpotato...I forgot to mention to you that I know 12 TN women. They are all ages, all different years from their last treatment but ALL STILL HERE!!! One 15 years past her initial diagnosis. TN has a worse prognosis than ER+, but the majority of women go on to live long csncer free lives. Hang in there and pop in here whenever you need a boost

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  • jac13
    jac13 Member Posts: 5
    edited July 2016

    Hi I was DX in March '16 TNBC in my right breast with nodes.i am 52 years old I went through 12 weeks of taxol with every 3rd week a clinical trial drug called PEMBROmiacin. I am now on a two week break and getting ready to start my second round of chemo (AC) 8 weeks every other week. then surgery, then radiation. My process seems to be the opposite of everyone else. Thanks for starting this thread!

    Jac

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  • Triplegirl
    Triplegirl Member Posts: 27
    edited July 2016

    Hi Janet,

    Thanks for the encouragement.  It's the waiting and not knowing that's the worst.  I did have a great day yesterday as I went in and they removed the remaining two drains.  So nice not to have them anymore.  I did find the formula for the RCB index and emailed that to my pathologist so I hopeful I will have that information soon.  I'm expecting I may be a RCB-2 but hoping that maybe I would be a RCB-1....gotta have some hope.  I so appreciate everyone on here for the encouragement and support.  I go back to work on August 8th which is 4 weeks out from surgery.  Seems a little soon to go from no activity to full on work.  Oh well.....onward and upward.

    Janice:)

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  • ALHusband
    ALHusband Member Posts: 344
    edited July 2016

    Well...this summer I am convinced...at least here in Alabama...that none of us has to worry about this cancer stuff any more because I think we're all going to spontaneously combust anyway! Dang it's hot!

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  • Triplegirl
    Triplegirl Member Posts: 27
    edited July 2016

    Hi TNPotato,

    I lived in Mukilteo for 12 years and moved down to the sun...lol..4 years ago.  I know Kirkland well as I worked in Bellevue for many years.  I am BRCA negative so I was relieved but then this P53 at 100% and the ovaries talk.  I asked to table that as I was only 4 days out from my surgery last week.  I need some time to mentally process this and a little more information.  Hang in there as best you can....I'm trying but it's soooo hard with Triple Negative.  Yes vacations....my onc isn't back until next Tuesday and I'm not even sure she'll bump up my appt.

    Janice

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  • Ag23
    Ag23 Member Posts: 37
    edited July 2016

    triplegirl - from my understanding, there are two types of p53. The tp53 amplification can be a genomic alteration in the tumor itself. You can also have a genetic (as in inherited, not tumor but in your Dna) condition called li frameau (I'm sure I'm not spelling it correctly) that is tied to p53. Do you know which your dr is referencing?

    I'm curious because I didn't have a great response to chemo either (shrank only from 3.5 to 3.2). I've had foundation one test the tumor, and there were mutations found - tp53, myc, and fh.

    My genetic profiling did not show anything, so I don't carry any genes that make me predisposed to cancer (including p53).

    Let us know what you find out, and what your doctor says about this. I haven't received a whole lot of information from my doctor about this, so I'd love to know what your MO says.

    Hang in there😘

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  • Scamp
    Scamp Member Posts: 13
    edited July 2016

    Hi Titan,

    Your treatment plan sounds like mine except I was diagnosed last year at 52. Just finished all treatment on July 8 and am looking forward to my 53rd bday on Aug 5th

    My particulars are listed below my signature in this post.

    This has been such an emotional challenge for me but I am hopeful for the future. Hang in there everyone

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  • Lisey
    Lisey Member Posts: 1,053
    edited July 2016

    Ladies, I'm not Triple Negative, but I'm posting this to see if anyone of you have heard about this? This is from Agendia, the makers of mammoprint, and says:

    In the Luminal A-type group (n = 90; including seven HER2-positive patients and eight triple-negative patients by IHC/FISH), the 5-year DMFS rate was 93 %. The pCR rate provided no prognostic information, suggesting these patients may not benefit from chemotherapy


    Here's the link: http://www.agendia.com/response-and-long-term-outcomes-after-neo-adjuvant-chemotherapy-pooled-dataset-of-patients-stratified-by-molecular-subtyping-using-mammaprint-and-blueprint/

    If anyone has more knowledge of this and it's implications, Triple negatives can be Luminal As? I'd really love to know it.


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  • TNpotato
    TNpotato Member Posts: 71
    edited July 2016

    Cathytoo - Thanks! I will do that! :) Today has been a better day, got outside in the sun. That really helps me...

    jac13 - I haven't heard of PEMBROmiacin before. Is it a new alternative to Adriamycin?

    Triplegirl - I totally get the 'move to sun'! I lived in Rochester, NY for quite awhile so the lack of sun most of the year doesn't bother me as much as it used to. And I love the summertime the most around here. You're gonna miss Seafair tho'! It's just around the bend! ;)

    Shopgal2 - "Last year cancer was the first and last thing I thought about every day. Today I can say that I think about it during the day but not all the time. And some days not at all." - I am really looking forward to that! May it be sometime soon for ALL of us!!

    ALHusband - LMAO! Thank you for that smile, much needed! :) My sis-in-law gave up on the heat, drove from San Antonio to Boston to stay with family there. Too hot for a transplanted New Englander!

    And to all who gave hope above that I didn't call out- thank you! I can't put in words how much it helps to hear other people say "we can beat this! I did!" Hugs to all!


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  • LoveMyVizsla
    LoveMyVizsla Member Posts: 813
    edited July 2016

    TNpotato, it was a balmy 77* down on Whidbey Island today. Took the dog there to the 40 acre dog park.

    Today marks my first week post chemo, yay!! My sinuses are already getting better.

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  • TNpotato
    TNpotato Member Posts: 71
    edited July 2016

    LoveMyVizsla - It made it up to a scorching 81 here today! lol

    And CONGRATS ON FINISHING CHEMO!!! WOOHOO!! :))

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  • TNpotato
    TNpotato Member Posts: 71
    edited July 2016

    Lisey - I have no idea what most of that link is even talking about! lol I'll have to start reading...

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  • Cathytoo
    Cathytoo Member Posts: 667
    edited July 2016

    RADIATION COUNT DOWN. THREE MORE.

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  • Meadow
    Meadow Member Posts: 2,007
    edited July 2016

    Curly, sorry your rads experience was so rough, just so sorry! Glad that is behind you.

    Al, yes, so bloomin' hot here too! We spent a week in your lovely state, down in Gulf Shores. It is my fav!

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  • Meadow
    Meadow Member Posts: 2,007
    edited July 2016

    Just learned our Purple Minion, who used to post as NotDoneYet, has passed. Her husband posted on FB. She was IBC too, like me, and we posted together on IBC forums. She was brave and smart and wonderful. She has a 16 year old daughter. Just so sad right now. She is an Angel.

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  • LoveMyVizsla
    LoveMyVizsla Member Posts: 813
    edited July 2016

    ((NotDoneYet's family))

    Woo Hoo, Cathytoo

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  • SA8PG
    SA8PG Member Posts: 371
    edited July 2016

    Meadow that's so sad. I didn't realize her lung mets progressed so quickly. I really enjoyed her sense of humor and kindness. She will be missed. Rest in peace sweet pink sister. I'll be lifting up her family and all those that loved her in prayer. Going to bed with a heavy heart tonight thank you for letting us know.

    Xoxo

    G

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  • TNpotato
    TNpotato Member Posts: 71
    edited July 2016

    Cathytoo - wow! you're almost done! :))

    Meadow - I didn't know NotDoneYet, but she and her family will be in my prayers. Her daughter is a little younger than mine, it's just so unfair, so wrong... Hugs to all who lost a friend tonight.

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  • sylviaexmouthuk
    sylviaexmouthuk Member Posts: 7,847
    edited July 2016

    Hello Katheseward,

    I just wanted to offer words of comfort and encouragement and tell you that you will get through this. Do not believe all the doom and gloom about TNBC.

    I was diagnosed with TNBC back in 2005 and told the prognosis was not good. I sailed through treatment and am now over eleven years out since diagnosis and have never so far had any problems, Stay with these threads where we have wisdom. knowledge and experience. Be positive about negative,

    Fond thoughts.

    Sylvia xxxx

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  • Ag23
    Ag23 Member Posts: 37
    edited July 2016

    Lisey- this is interesting. I didn't think that tnbc could also be luminal a. I thought all tnbc was basal like. How does one know is we would be tnbc and luminal a?

    I find this interesting because my tumor did not respond to chemotherapy. Thank you for posting

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  • Meadow
    Meadow Member Posts: 2,007
    edited July 2016

    TN POTATO and Kath, Welcome! I wanted you both to know I am so glad you found this thread You will find tons of information and support here.

    Ag, I read about a new drug trial for TNBCers whose tumors did not respond that well to chemo. Have you seen it too? I will check for a link somewhere.

    Hugs to all. COCKER, hoping get you are feeling better every day. Hoping the leg is healing. Hugs to you big time.

    Sylvia, our sister across the pond....hello to you too.

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  • LoveMyVizsla
    LoveMyVizsla Member Posts: 813
    edited July 2016

    There are at least 6 subtypes of TN. I had read about it before in a Medscape article, but I can't find that one again. Instead, here is a different one: https://www.jci.org/articles/view/45014


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  • Scamp
    Scamp Member Posts: 13
    edited July 2016

    Loving all the support and encouragement. Still managing neuropathy from Taxol and peeling skin from radiation but looking for blessings in each day! Just finished radiation on July 8th and my hair is starting to come back...still fatigued but feeling like myself a little more.

    Three of my sorority sisters have been diagnosed with BC in the last two years, we all are TN...


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  • TNpotato
    TNpotato Member Posts: 71
    edited July 2016

    Scamp - Congrats on finishing Rads! woohoo! And I'm sorry to hear that so many of your friends have been diagnosed as well! Starts to make you wonder, was it an environmental exposure? Something we ate? Probably all of the above...

    Meadow - Thank you for the warm welcome! I would be interested in that new drug trial as well, if you can find a link! :

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  • Scamp
    Scamp Member Posts: 13
    edited July 2016

    Thanks TNpotato! I do wonder if its environmental... too much to be a coincidence. Hang in there, HUGS and Take care!!

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