Calling all TNs

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  • MicheleS
    MicheleS Member Posts: 196
    edited May 2010

    hi everyone! Had TM's done yesterday and just found out that they are normal! BIG sigh of relief.  Hope everyone is having a good day!

    xxoo

  • scooter-12
    scooter-12 Member Posts: 26,606
    edited May 2010

    great news Michele Smile

  • Morgan513
    Morgan513 Member Posts: 303
    edited May 2010

    Excellent news!

  • kmartin
    kmartin Member Posts: 8
    edited May 2010

    Workmother,

    You can do whatever they tell you to do....you can!

    My friend and my aunt are both 5 year TNBC survivors and my aunt had a 3 cm tumor. Me, my friend and my aunt all had chemo/RT and surgery. Your tumor is very small, caught very early considering how fast these tumors can grow ~ one month I did not have a tumor in my breast the next month it was there...1.7 cm and 4 positive nodes.

    Today I am very good. It did take a while to feel back to "normal" ... but you do recover from this. Most of us are just fine.

    Kathy

  • kmartin
    kmartin Member Posts: 8
    edited May 2010

    Hi Triceblessed, I was at the Avon walk in D.C. cheering on my aunt...who is a TNBC 5 year survivor aged 50. Was a great day, but hot for the walkers.

    Kathy

  • kmartin
    kmartin Member Posts: 8
    edited May 2010

    My friend is a 5 year TNBC survivor who is now 65. Close.

    She is currently having a very small 2mm lesion worked up...I am sure it will be nothing. It was found on her annual routine MRI. She is very nervous as she was just now feeling out of the woods.

    Kathy

  • Titan
    Titan Member Posts: 1,313
    edited May 2010

    Yay Michele! And Yan..thanks for sharing yours and Olga's story with us.....



    Tonight...after my wonderful mammo this week..my DH said..ok you are cured..and I just looked at him and so ...no I'm not...I'm good NOW..hopefully it continues..but you just never know..I said I'm only a little over a year out....I felt so bad for him when I said that..but it is the truth..but for this day, this hour..I am good and I'm going to enjoy it.



    It does kinda suck that we may never ever have peace of mind...but then again...time does make a difference..the longer we go..without an incidences..we will probably forget this..at least push it way back in the recesses of our mind..



    I thought my left ankle looked a little swollen today and immediately I kept thinking that it was my heart or kidneys or something...I just hate sometimes where our brains take us.

  • Titan
    Titan Member Posts: 1,313
    edited May 2010

    And now..after the mammo..that I was totaly freaking out about..it is just the roller coaster ride people talk about! ..Ok.now that is over..what do I find to freak about next..????/ It just take awhile to calm down and relax and go on...



    Have a Happy Mom's day every one!

  • Titan
    Titan Member Posts: 1,313
    edited May 2010

    Kathy..good luck to your friend...hopefully it is nothing....

  • HeidiToo
    HeidiToo Member Posts: 965
    edited February 2011

    Husband got a call today from the Breast Cancer Society @ 866 825-2610.

    This really pushes my hot button. Caller identified herself and asked how we were. Husband said, "Well, not so good. My wife *has* breast cancer."

    The caller then went on to tell my husband that I would be fine. He said, "How do you know that?" She replied: "all I had to do was think positively."

    When my husband pointed out that there was a lot more involved than that she started to get defensive, so he hung up on her. 

    Can you believe that? This woman/company calls US (probably to solicit $$$), tells US how we should think, and then gets defensive when WE don't agree with her *absolutely clueless approach*.

    Where do they get the nerve?

  • kmartin
    kmartin Member Posts: 8
    edited May 2010

    Thanks Titan...My BC story started 2/8/08 at 9:45 pm while taking a rare bath...funny how you remember the exact moment in time. I found a lump in my R breast. It wasn't there the month before. On 2/14 I had the sonogram and dx mammogram (same day as anglesabove) saw the tumor and knew immediately that is was cancer. I had a lumpectomy and axillary node dissection on 3/11 and my first round of TAC on 4/3/08. I had 4/27 positive nodes.

    I had been very stressed the years before this tumor appeared: working on my doctorate, a very hectic life with 2 teen aged sons, one son with tons of trouble, and a husband who was a police sergeant. I have always wondered about all this stress!!

    I had rounds 2 and 3 then got very sick. Had fevers, cough and was admitted to hospital for 8 days. The theory is that the taxotere attacked my lungs and caused the fever. They gave me round 4 of TAC then round 5 of just AC then fired me from chemo.

    Started 33 rounds of RT the last week of August 08 and finished up in October.

    I have also dealt with a blood clot in my port arm - L. Took blood thinners for 3 months then when I came off had a recurrence of the swelling in my arm and the clot was back, or never went away. I was tested, and found to have Factor V Leiden. This is a genetic blood clotting disorder. I will take Coumadin for the rest of my life.

    Since 2008 I have worked hard to get back to "normal." It took me all of last year for this to happen. I am now feeling good, wearing Dansko shoes to reduce the foot pain I have, and having massages as often as the budget will allow....great stress reducer. I am currently thinking of seeing a psychologist this summer to work through a few lingering issues....??should I have a B mastectomy?? should I take a bisphosphonate??why don't people understand I am still dealing with having cancer?? when will I feel better??

    Still working a few things out...but feeling good 2 years later,

    Kathy

  • Morgan513
    Morgan513 Member Posts: 303
    edited May 2010

    Good morning! 

    Kathy, I very much sympathize with you.  I see a therapist all the time.  There are so many issues to get through and a lot of stress to reduce. 

    I am also working through having a BMX.  I had genetic testing done and started to accumulate information to help me make that decision.  As of today, I am leaning against it.  I have worked very hard at getting physically fit and I don't want to have more surgery and have to work my way back again.  But, we'll see if that changes after my next mammo!  Too much stress!

    I am on the bisphosphonates trial.  It is easy easy to do and I feel like I am doing something to help myself since we all know that TNs do not have many choices for additional therapies.

    Have a great day!

    Lorrie

  • navymom
    navymom Member Posts: 842
    edited May 2010

    I often wonder about the "stress" issue.  One of the first things my Onc said to me when we were talking about treatment plans was regarding stress.  She said that whatever it was in the past 3 years that was causing me stress to either fix it or get rid of it!  I am not sure where she came up with the number 3 for the amt of years but for me she it it spot on.  EXACTLY.  I knew exactly how the time table added up for me.  I had several life changing events in those 3 years. And getting Dx with Breast cancer was not even to most stressful event.  My girlfriends called my life a tsunami!

    So I have to wonder..........that type of stress does it somehow "wake up" the cancer cells?

    Navy

  • Nanalinda
    Nanalinda Member Posts: 18
    edited May 2010

    I was 49 when I found my lump while in the shower in July 06.  Waited 2 weeks to see what happened with it; when it doubled in size during that time, it scared the crap out of me.  Went to see Dr. and we all know what happened next.. my life changed forever. Had lumpectomy and SNB which was negative.  Stage1, grade 3, TN basal tumor.  I underwent 6 rounds of TAC, and 33 rads.  After that I went on with my life, thinking I was done.  In July 08, when I had finally gotten to the point where I was not always thinking about cancer; I noticed that my arm was swollen; thought it was lymphedema.  Saw my PCP who thought I might have a blood clot, so she ordered an ultrasound.  The ultrasound showed multiple tumors in the lymph nodes of my chest wall, and near my clavicle.  PET scan showed a large mass of tumors in the middle of my chest (under the breast bone- mediastinum), and one tumor in my spine.  I have been on weekly chemo ever since then.  First it was Taxol/Avastin which worked for 10 months; next was Gemzar which worked for 6 months, and I am now on Navelbine which has not been working very well, and see a switch in chemo in the very near future.  My spine mets continued to spread throughout chemo, and ended up with multiple spine mets this past December and had to have rads d/t severe pain.  The rads helped tremendously and pain is mostly relieved.  I live life one day at a time, and try to get as much joy out of it as I can.  I try not to think too much about the future.

  • Summer38
    Summer38 Member Posts: 96
    edited May 2010

    Hi All,

    I was diagnosed on February 26, 2010 at 37 years old. I found the lump while in the shower after 2 weeks of pain in my left breast. Thought it may have been PMS related so waited 3 weeks for my cycle to end. Mammo, ultrasound, and core biopsy on breast and lymph node showed TN IDC. BRCA negative (thank God). Bilateral MX on 4/7/10 with axillary node dissection, 2.7 cm primary and 4 additional tumors found as well as DCIS, 6/15 nodes positive - Stage 3B, grade 3. I will start DD AC x4 on 5/18 followed by DD Taxol x4 with radiation after that.

    I have been "lurking" on this board for awhile and I can't tell you how helpful it has been to read the stories of women going through this journey with me! Thank you.

  • Sugar77
    Sugar77 Member Posts: 1,328
    edited May 2010

    Hi Summer - welcome to BC.org.  You will get so much support from the lovely ladies on this thread and on this website!  

    Sherri 

  • Titan
    Titan Member Posts: 1,313
    edited May 2010

    Heidi...I have a "friend" that keeps sending me e-mails about cancer...every kind of cancer...I think I'm getting tired of it..my dh told me to just delete them...I opened them because I think they may be jokes..and I love those but there it is...CANCER...in big print...I feel like I get a shock from my pc....don't people realize that we are reminded of it every day ...without their help? I know that they mean well..but seriously..does it really help cancer research to pass along the woman walking for breast cancer....or am I a "B".....another friend of mine said I should just e-mail this girl back and tell her that I am not allowed to receive junk e-mails at work..I'm about ready too...ahd also..when I get those 800 numbers I just let them go into voice mail...I figure if I want to talk to them they can just leave a message and I will call back..most of the time they hang up.



    And Summer..glad you quit lurking and joined us....my kids call me a "creeper" because I have a facebook account!...



    And Nanalinda..good to hear from you also....reading over all of our stories of how we got here....and what we have gone through....well...cancer simply sucks.

  • Summer38
    Summer38 Member Posts: 96
    edited May 2010

    hmmmm, funny how just seeing my "story" in print and reading your responses has made me "tear up".  I haven't really cried yet and I am just waiting for my strength to just fall apart. I think that knowing chemo is just a little more than a week away has made this real. I know the side effects are what will affect my children ( 9 1/2 & 11 1/2) the most - I will officially look sick to them, and this is what kills me.

  • Summer38
    Summer38 Member Posts: 96
    edited May 2010

    Titan - LOL, how else do we keep watch on our kids if we don't "creep" on Facebook???

  • navymom
    navymom Member Posts: 842
    edited May 2010

    Hang in there Summer.  Yes, your kids will see that you are really sick once chemo starts.  My grown son cried terribly when he was home on leave and my hair was falling out.  He held my hand while my DH shaved my head.  And when it was over and my hair was gone I popped on a hat and said...."I'm glad that's done"   And he seemed to pick up on my positive mood and that was that.  I do not know what it is like to go through treatment having younger kids at home. but they will  see that you are strong and brave.  And Just like adults.....they may feel better helping to make you feel more comfortable or they may prefer to stay "out of the way".  I am sure it is a real balancing act and probably changes from day to day.  Keep posting here.  There will be others that are in your situation that can share ideas and info.  Good luck with chemo.  Let us know how you are doing.

    Navy

  • Morgan513
    Morgan513 Member Posts: 303
    edited May 2010

    Summer--I know how scared you are right now.  I think the most difficult part for me was just before chemo.  Somehow, it was very difficult to get my head around putting that stuff in my body when I felt fine.  I kind of paniced and cried when I went to go for my prep bloodwork at the onc's office.  They brought me in for chemo training to take some of the mystery away and give me some positives to hang on ot.  I also worried about how my sons would react to me during treatment.  I actually had two wigs which I loved.  I wore them all the time.  I think it helped them to see me normal.  And truthfully, chemo was very easy for me so I was rarely down.  I was able to be the mom I always was and that was comforting to me and to them as well. 

    Take care,

    Lorrie

  • Morgan513
    Morgan513 Member Posts: 303
    edited May 2010

    Happy Mother's Day!

  • Charliebird
    Charliebird Member Posts: 8
    edited May 2010

    Titan and Summer---You are not alone . . .I am known in my family as a "stalker" (by my 16 year old daughter usually)---even when I'm looking at posts from people who are officially my friends---lol.

  • Titan
    Titan Member Posts: 1,313
    edited May 2010

    Summer..you may not look "sick" at all....except for the hair thing! I got a really cute wig..people thought I was my daughter's sister in it!.... I didn't look like the old me at all..it was kind of hard at first because people didn't know me but after they got used to the new look it worked out well.



    My son never came with us to a treatment but my daughter did...she went out and bought us lunch....we had to share a room that day with someone else but the other lady had her daughter there..we talked the whole time. Chemo is really not that bad. The only day I was actually kind of down was the day after the neulasta shot and that may not happen to you. Try to keep active..I walked even after chemo treatment day...it made me feel good and kept my mind off things..plan fun things to do on your "off" weeks....good luck and let us know how you are doing!
    Yes..I do creep on my kids but that way I know what is going on...I think it makes them behave better on Facebook actually....


  • Sugar77
    Sugar77 Member Posts: 1,328
    edited May 2010

    Hi Summer - I have a 10-year-old daughter and I had the same concerns as you before I started chemo.  I was so worried how she would handle it.  I explained that I felt fine and the treatment would make me feel sick but I stressed that it would be the medicine making me feel that way. She cried when I said I would lose my hair. However, she coped fine with that because I brought her to the wig store at the hospital before I even began treatment and they let her try on wigs (...even before I had tried any one!). I also took her by the chemo area so that she could see where I'd be having the infusions. When I went through rads, one day my DH and DD came with me to treatment and the technicians allowed them in the room when they were doing the set up. One of them explaied everything to my daughter and she thought it was really neat.  I tried to be open and honest and keep her a part of things. So far, she's coped really well and I am so very proud of how she's dealt with it. 

    Sherri 

  • violet7
    violet7 Member Posts: 22
    edited May 2010

    Nanalinda, I am so sorry about your mets, what a horrible blow that must have been.  I'm sending healing energy - I hope your new treatment keeps cancer at bay.  Never lose hope because people do go into spontaneous remission and all sorts.  Pleased to meet you, Summer.

  • cinnamonrocket
    cinnamonrocket Member Posts: 1
    edited May 2010

    Hi

    I just wanted to let all triple negatives out there that there is lots of hope. I was diagnosed over 5 years ago, triple negative, stage 3B - 8 cm tumour in breast and 3cm tumour in axilla. I  had chemo first before surgery so they don't exactly know how many lymph nodes were involved. In August of this year I will be at my 5 years in remission as my oncologist told me I can take my remission date from the end of chemo. That was five years ago and now there are more advances made as far as treatment etc. so there is hope for long term survivial and a cure.

  • jenweg
    jenweg Member Posts: 55
    edited May 2010

    Thanks for letting us know cinnamonrocket.  That is awesome and gives us all hope.

  • gillyone
    gillyone Member Posts: 495
    edited May 2010

    Thanks rocket - just what we need to hear.

  • Sugar77
    Sugar77 Member Posts: 1,328
    edited May 2010

    Cinnamonrocket - so glad to hear you are doing well.  You are surely an inspiration for all of us. thanks for sharing!

    Sherri