Calling all TNs

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  • Marianne52
    Marianne52 Member Posts: 78
    edited February 2013

    Mumtobe,

    There are many Women 15-20 year's out. I was DX: in June 2012. My MD also told me there are many Women who live very long lives being Triple negative. I  know it is easier said than done but try not to worry about it. Also, ask you MD about sucess rates. A lot has changed in recent year's. God Bless... Marianne

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  • shadytrake
    shadytrake Member Posts: 142
    edited February 2013

    Hi All,

    I start my chemo on Monday and was going over my notes from my MO visit and I had a scare.  My MO mentioned that my stage was IB.  I didn't think too much at the time because I was in the consult talking about my chemo and other things.  Then today I was going over the information again post RO visit and I decided to wander over to the staging link again to refresh my memory on the A, B, C in staging.  Well BC.org states that Stage IB:

    • there is no tumor in the breast; instead, small groups of cancer cells – larger than 0.2 millimeter but not larger than 2 millimeters – are found in the lymph nodes OR
    • there is a tumor in the breast that is no larger than 2 centimeters, and there are small groups of cancer cells – larger than 0.2 millimeter but not larger than 2 millimeters – in the lymph nodes

    My final path reports stated that my nodes were all clear.  So this didn't make sense to me.  I should be IA.

    Stage IA describes invasive breast cancer in which:

    • the tumor measures up to 2 centimeters AND
    • the cancer has not spread outside the breast; no lymph nodes are involved

    I had a small panic attack thinking there was something they found different in tumor board that I didn't know about.  I called BS's assistant and asked her to clarify that for me because I was having a small freak out.  She just called me back and said he must have meant to say T1B for the size.  She said she went over all of my reports again and the tumor board report and everything there states T1B, N0, M0 which puts me in Stage IA. She said she will have the MO confirm it with me on Monday at my chemo appointment.

    Whew! I know it may not sound like a big deal but it is a big deal!  IA vs IB means cancer not in the nodes vs cancer in the nodes. Surprised  Deep breath and reboot.

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  • OBXK
    OBXK Member Posts: 791
    edited February 2013

    Joyce - wonderful news!!! I hope you have a lovely visit with your family.



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  • jenjenl
    jenjenl Member Posts: 948
    edited February 2013

    luvBngGma - so happy to hear this, enjoy your trip!!!

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  • Titan
    Titan Member Posts: 2,956
    edited February 2013

    Awesome news Joyce!

    My dh and I are celebrating 30 years of marriage this weekend...I bought him a new wedding ring...going to put Train on the laptop at our hotel and ask him to marry me...hope he says yes...lol....guess we will probably mess around a little too...ha ha...that goes with it!  

    I do like it that our chances of reocurrence goes down after a couple of years....but man getting through those first few years is freaky....just be vigilant ladies...I know I am..

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  • SherylB
    SherylB Member Posts: 450
    edited February 2013

    Mumtobe,

    With triple negative the evidence says that if no recurrence in the 3-5 year period that our chances of recurrence actually becomes lower than women with other types of BC. Would need to reread some research to see if it is actually 3 or 5 years. Also because TN is such an aggressive cancer it responds very well to chemo and I see you are getting all the big guns. I couldn't get the Adriamycin because of health risk/contraindications such as diabetes for years, a previous heart attack and mom and brother both had open heart surgery. So you are getting one more chemo than me. Enjoy every minute of your life with your family and precious child. None of us are promised anything but today.

    Hugs, Sheryl

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  • OBXK
    OBXK Member Posts: 791
    edited February 2013

    Titan - have a wonderful weekend.

    It sounds very romantic.

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  • bak94
    bak94 Member Posts: 1,846
    edited February 2013

    mumtobe-My first diagnoses was in 2002, stage 2b-3.5 cm tumor and 2 positive nodes, no recurrence. I had a new tumor show up in the opposite breast in 2011 (that's a different story) so no recurrence for many years. My thoughts are it stayed away for 9 years, it can stay away again for another 9! Hopefully more as, now I have had a bmx, I know that doesn't change recurrence, but no more new primary!

    I had an accident today. One of my goats knocked me over! Fell backwards first landing on my hip and then bumping my head on the ground. Contemplated going to the emergency room, but decided not to. No dizziness, but I do have a headache and my neck and back/hip hurts.

    Any news from Dawn? I miss her.

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  • 5thSib
    5thSib Member Posts: 141
    edited February 2013

    According to the book "100 Questions and Answers About Triple Breast Cancer " recurrance is most likely to happen in the first 2-3 years and rarely recurs after 5 years. I found this book on the TNBC Foundation site, but I think the link took me to Amazon to purchase.

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  • Renae64
    Renae64 Member Posts: 99
    edited February 2013

    I really would like to know if anyone here was on the pill before dx, thank you. Renae

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  • jenjenl
    jenjenl Member Posts: 948
    edited February 2013

    bak94 - Yikes, that damn goat!  Hope you are not hurt.  Take care.

    Renae64 - I had taken the pill and mirena in the past.  A few pages back was a breif discussion on it.  Someone brought up a very good point pills are estrogen and our cancer is ER -. 

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  • gillyone
    gillyone Member Posts: 1,727
    edited February 2013

    Titan - enjoy your weekend!

    Bak - good to  hear from you but sorry about the goat accident. I haven't seen anything from Dawn in a long time. I don't know if anyone has contact outside of BCO?

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  • Cocker_Spaniel
    Cocker_Spaniel Member Posts: 1,204
    edited February 2013

    Titan gee I would love to be a fly on your hotel wall with a camera. You could wear something sheer/flimsy/see through. You could do it in the buff but men like to take something off!.   Now when you get down on your knee for the proposal don't cough, stutter, fart  or fall over (can just see you with your arse in the air and the ring round your big toe,  lol)   cause that's when I would take the photo haha. Congratulations to you and your old fellar girl.  30 years nowadays takes some doing. Have a great time and........... I hope he says yes.  PS don't get pregnant.

    Bak sorry to her about your accident.  Hope you are ok and not too bruised.  Your post gave me great hope. That is a long time without recurrence before a new primary.  Makes me think I could make it too.

    Can't help with the pill ladies.  Took it many years ago because they said it could help me to become pregnant but I only took it for one month  and then it caused a blood clot in my lung.   I have never really liked the pill though because I wasn't keen on it stopping something that to me was natural (period). Never really liked my girls taking it either, though it was their choice.  To me when you have completed your family it is up to the man to do something (if he's brave enough !!).

    It's a beautiful day here today and I feel like doing something really radical.  Perhaps I will propose to my old fellar too lol. 

    Have a great day ladies.  Thinking of you all. Annie           

       

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  • Mumtobe
    Mumtobe Member Posts: 159
    edited February 2013

    Thank you so much for your encouraging words ladies, some days are easier to get through than others, as you so well know. I don't know where I'd be without you all xxx

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  • Spica16
    Spica16 Member Posts: 130
    edited February 2013

    bak - I feel for you, girl.

    I have been hobbling and hurting since I took a tumble down the stairs last week, when my wonky MS-foot tripped me up. (No goats involved). 

    Silver lining ...stopped thinking about BC!!!

    ~ Shar (aka Grandma Wobbles)

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  • InspiredbyDolce
    InspiredbyDolce Member Posts: 1,181
    edited April 2014

    Hi - I get so confused on where I've posted, and the only way to know is to search for my own name.  Is that how you all know how to get back to your conversations?

    Okay - so to update all of you, because I have a very active mind, I am getting this 'most likely' scar tissue removed from base of right breast.  MRI in January notes nothing to suggest malignancy, but because they still didn't say what it was, I'm going in!  PS thinks the sling for the implants has folded over.

    I saw my PS yesterday who agreed on the surgery, and at the same time he will put in new implants for me.  We think one of them has rotated back to front - backwards.  At the same time he will remove this area of concern for me, and sculpt me a little more on the inside to make sure additional scar tissue is gone.  I don't see any, but can feel a spot or two when I do my bse.

    I will reload the pages and see what I have missed!

    Regarding the pill, I was on it for a long time, OrthoNovum, but have been off of it for 10 years now.  I don't have kids though, no family history of bc.  However, my tumor was completely surrounded by a rim of fat.  So maybe it was my diet that was a contributor.

    Nowadays, its's low fat and lots of exercise for me.  Although I don't think I've stayed at 20 fat grams a day, but I know I'm like a 95% better at eating healthy than I used to be.

    - scar tissue post-mastectomy

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  • Spica16
    Spica16 Member Posts: 130
    edited February 2013

    Renae - We have all gone through what you are dealing with now .. the why? the how? You can search high and low, but at this point in time, there is no definite answer. Hopefully, research will someday find the answer to those oft-repeated questions.

    I have gone through this agony twice, personally, in my life...10 years ago with MS dx, and 1.5 years ago with TNBC dx. I looked over the same check lists - family history (no); lifestyle (no); diet (probably not); weight (oh come on, it's not always about the weight!); environment (curse you, industrial polluters); birth control, HRT, Tylenol, vitamins...(curse you, Big Pharma); blah, blah, blah...ad nauseum.

    I found no MS in my family, with my friends or coworkers. Guess I just had to be different. Of course, now that I am aware of everything MS, I run into people all the time who have family members and friends with it. "Awareness" brings it out of the shadows.

    Same thing with BC, for me. I know of some cancers in the family, but no BC. I had few classic risk factors, but that didn't seem to matter...I got it anyway. There I go "pioneering", again.

    Not only did I go down the checklist with BC, but I thought that maybe I had some unique causes. My docs pretty much blew those theories away.

    I was on MS therapy drugs pre-BC dx, which are immune system modulators. The last therapy was a very strong one, given monthly by IV. (Little did I know that it would make chemo so much easier for me...been there, done that). It worked wonders for my MS, but did it cause my BC???  Aha, answer found!  Nope. I saw a MS researcher, and he stated that so far they have no proof of these drugs causing cancer - but they do suspect them of allowing cancer to spread. Hmmm, guess I have to accept that there is no reason...

    But wait!  Because, as we all know, Fate or Mother Nature or whoever is in charge of these life situations, has a wicked sense of humor... I know the answer!  Nope, wrong again. I used to work in a hospital pathology/histology lab with breast biopsies, ER and PR assays, pathologists and pathology reports. I worked with them everyday, and never once did I think about ever having BC, myself. It didn't exist in my family, I had always been good about getting check-ups, mammograms, nursed my babies, did everything "right". Well, guess what?  "Isn't it ironic?" (Curse you, Alanis Morissette!!!)

    Soooo, Renae, what I guess I am trying to say with this long rambling message is...don't blame yourself. Stop beating yourself up. You didn't cause BC, you don't deserve BC, but you have BC, and with the help of your family, friends, docs, nurses, techs, and this BCO community, you will fight it with everything you can.

    Have a good cry, shout, scream, whatever it takes. (I yelled at the stars when we were camping, that fateful August of my dx). Then set your mind to fighting and LIVING.  

    Please be kind to yourself ~ Shar

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  • gillyone
    gillyone Member Posts: 1,727
    edited February 2013

    Dolce - add the threads you want to keep track of into your favorites. It's at the bottom of the page.

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  • Titan
    Titan Member Posts: 2,956
    edited February 2013

    This thread makes me laugh and cry at the same time...

    sorry about the goat Bak..but geesh...I can see it in my mind....there is a goat farm near my house..a couple of farms...one has those cute little mini type goats...goats are popular as a 4-h project in my town...we always have to go see the goats....they are quite unique.

    Cocker..you totally crack me up..thanks for the advice!  funny thing is...everyone, you guys plus all my local friends know about this ring...good thing he doesn't creep on here or on my phone...

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  • Hopex3
    Hopex3 Member Posts: 397
    edited February 2013

    Bak....big ouch! I hope you kicked the goat after you were able to get up!



    Titan...Happy Anniversary! That is quite the milestone and almost unusual to be married that long. Congratulations! Make sure you use protection! Lol



    Cocker..You are too funny!



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  • InspiredbyDolce
    InspiredbyDolce Member Posts: 1,181
    edited February 2013

    Happy Anniversary Titan! Smile

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  • Cocker_Spaniel
    Cocker_Spaniel Member Posts: 1,204
    edited February 2013

    Hey Titan don't forget we all want to be invited to the wedding!!

    By the way, we have Ironman in NZ at the beginning of March. You could honeymoon there cause I expect you to take part, thighs a flapping.  I've been practicing really hard at my flag waving again for you and even learn't to clap so book your tickets.     

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  • Cocker_Spaniel
    Cocker_Spaniel Member Posts: 1,204
    edited February 2013

    Be careful Titan you can get stuck like that for hours!!

    Michael and Gary got married in California .. They couldn't afford a real honeymoon so they drive back to Michael's Mom and Dad's house in Portland, Oregon for their first married night together. In the morning, Johnny, Michael's little brother, gets up and has his breakfast. ... As he is going out of the door to go to school, he asks his mom if Michael and Gary are up yet. She replies, 'No'.  Johnny asks, 'Do you know what I think?' His mom replies, 'I don't want to hear what you think! Just go to school.' Johnny comes home for lunch and asks his mom, 'Are Michael and Gary up yet?' She replies, 'No.'  Johnny says, 'Do you know what I think?' His mom replies, 'Never mind what you think! Eat your lunch and go back to school ' After school, Johnny comes home and asks again, 'Are Michael and Gary up yet?' His mom says, 'No.'  He asks, 'Do you know what I think?' His mom replies, 'OK, now tell me what you think.' He says: 'Last night Michael came to my room for the Vaseline and I think.....I gave him my airplane glue

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  • SherylB
    SherylB Member Posts: 450
    edited February 2013

    Cocker_Spaniel,

    "I think...I gave him my airplane glue." To funny and what a visual for mom to find.

    Sheryl

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  • NavyMom
    NavyMom Member Posts: 1,099
    edited February 2013

    Hey everybody....Our TN thread has reached 20,000 posts!  Pretty impressive!

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  • 5thSib
    5thSib Member Posts: 141
    edited February 2013

    Happy anniversary, Titan. And thank you for starting this thread. Over 20,000 posts. Wow. Look how many people have been helped and blessed.

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  • Cocker_Spaniel
    Cocker_Spaniel Member Posts: 1,204
    edited February 2013

    I love my computer because my friends live in it xx Hannah xx

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  • SherylB
    SherylB Member Posts: 450
    edited February 2013

    Cocker_Spaniel,

    Love it about our friends living in our computers. So very true. The women on these boards are the best friends I have ever had and I have never met a one of them. Sure hoe I get to someday.

    Sheryl

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  • russell33
    russell33 Member Posts: 48
    edited February 2013

    Hi Sheryl, thank you for all your replys.  I wanted to ask you and the other ladies a question.  Not sure how many of you have started to loose your eyelashes or have already lost them but wondering if your eyes watered alot or had puffy eyelids when you wake up.  My eyes seem to be very sensitive right now and I believe I read something about watery eyes could be a side effect.  I'm going on my third treatment on Tuesday and still haven't lost all my eyebrows and looks like I'm starting to loose my eyelashes slowly.   Did loose my hair the 2-3 weeks after #1 chemo.  Which I'm fine with.  Just concerned about the swelling eyelids and watery eyes.  Thanks for any info.  Anne

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  • jenjenl
    jenjenl Member Posts: 948
    edited February 2013

    Anne - can't comment on swelling eyelids but when my eyes starting watering after tx #3 my onc told me it was the chemo irritating my tear ducts and to use Natural eye drops a few times a day.  It helps. 

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