Calling all TNs

135671182

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  • gillyone
    gillyone Member Posts: 495
    edited May 2010

    My tumor did not hurt one bit. It was just "suddenly" there. Of couse I found it on a weekend - Memorial Day weekend last year as I'm dressing ready to take DH and 2 sons to the airport. I did not say anything and had seen family doctor and had mammo and u/s by the time they came back. A hard week - and I knew when I saw the u/s.

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

    I just got back from the BS...he said see you in 6 months...said he didn't think I would need another mammogram for a year that he would give me a clinical exam in 6 months...I am going to think on this one...as much as the mammo did not find the first tumor...I still think that I have to have these every 6 months for at least 3 years...I like looking at the report that says my breasts are unremarkable..makes me feel good.

    My tumor hurt sometimes and sometimes it didn't....Usually it would hurt if I was at a sporting event and jumping around and yelling at the refs or something!

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

    Titan - I was told that I would get one mammogram per year in addition to clinical examinations every three months.  I, too, thought I would be getting a mammogram every six months but that's not the case.  I have a friend who had TN at 29 years old and she has never had a mammogram since.  Instead, they give her one annual MRI. I guess it depends on age, stage, etc...at least here in Ontario, Canada.

    Sherri 

  • [Deleted User]
    [Deleted User] Member Posts: 61
    edited May 2010

    My wife Olga, 33. Was 31 at the dx. 3 x FEC, 3 x Taxotere, mastectomy, 1/24 nodes, 35 rads. Declared NED Feb 2009. Dx with mets to lymphnodes, bone, lung and liver Nov 2009. 3 months of Xeloda - didn't work. Since Feb 2010 is on Carboplatin+Gemzar, Zometa. This combo seems to kick some cancer butt. Currently in remission, 4 cycles of chemo done, 2 to go.

    Take care,

    Yan

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

    That is good news for Olga...whee!  Hopefully things will continue to go right!

    I was just at a luncheon and of the 6 of us at the table FIVE of us had some kind on cancer...Four of us with breast, one is probably a 30 year survivor because she is probably around 75 or older, another lady that is a 26 year survivor but has had breast cancer twice and is now dealing with ovarian...they put an expiration date on her of 2 years but July will be 5 years!

    The other one was about my age..someone asked her how long ago it was and she couldn't really remember..she thinks it was 5 or may be 6 years ago...How cool is that?  That she doesn't even remember????

  • gillyone
    gillyone Member Posts: 495
    edited May 2010

    Not sure how long ago - here's hoping we all get to that stage! Very cool.

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

    Speaking of survivors...my Mom was diagnosed with BC in 1975, she is celebrating her 90th birthday today.  Did I mention she is a spry 90?  lol Smile

  • kane744
    kane744 Member Posts: 52
    edited May 2010

    Well, I'm one of the older "girls" diagnosed as TN.  Never felt a lump.  It was found during a routine mammogram in 9/08 when I was 64.  Had a lumpectomy, full axillary dissection, chemo, radiation.  Thought I was pretty much home free and eagerly returning to my normal, active, life.  Then, last month was diagnosed with lymphedema.  Am having a rougher time with this than the cancer cause this one is forever.  I wear a sleeve and guantlet every day and bandage at night.  A major life change.  Monday I'm having a routine mammogram, although I've had several, plus ultrasounds, MRIs, etc. due to lumps which turned out to be cysts, something I never had previous to bc.  What I would urge you all is to educate youselves about lymphedema and do whatever you can to minimize your risk of getting it.  It's a real bummer.  But, it did take my mind off my triple negative status!     

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

    Obviously triple negative hits all whole range of ages...a friend of mine's mom has it and she is 70...so is age really a factor here..it seems to go from the 30's until the 70's....maybe the researchers should come on here and read this thread!



    Kane..I have to admit I am totally stupid about lymphema...does it matter how many nodes you had removed...I had 5..the bs told me that there are up to 80 under your arm..how can just a few cause so much trouble? What are the signs and why do you have so long after your treatments? Is it something we need to always watch out for...along with everything else..well yay....the only issue I have is that it hurts a little to raise my right arm above my head..that is it...should I be concerned about it???



    Good luck with your mammo on Monday! I'm sure you you will hear that you have utterly boring breasts....I heard that this week and it was the best thing I have ever heard in a long, long time



    Oh and Scooter wish your mom a happy birthday from me...love to hear it...!



    And about the mammos...really how often should we get them? Everyone talks about the dangers of radiation...and probably most of us have had rads along with multiple mammos.....so what is the biggest risk...risk of cancer from too much rads...or not having the mammo and risk of a recurrence that we didn't catch because of not having a mammo.....?????

  • angelsabove
    angelsabove Member Posts: 39
    edited May 2010

    I am 37. I was diagnosed at 36.

    Never had mammogram. I had no family history, had children young, I nursed and was waiting until 40 to get MAMMO. Found lump myself on April 11th 2009. It literally came out of NOWHERE.

    Diagnosed 4/27/2009. Double mastectomy by choice on 5/21/2009. Was told what looked like a 2.5 to 3.0 cm tumor and no lymph node involvement on scans, turned into a 4.7 cm tumor with 3 out of 13 lymph nodes positive for cancer.....

    Took a three week break and started chemo June 17th 2009......12 weekly Taxol and 4 tri-weekly FAC....Ended on November 16th 2009.

    Took another three week break and did a pet scan on Dec. 14th 2009....NED THANK GOD!!!!

    Started Radiation which was 27 treatments and 5 boost. We did use the bolice twice a week.

    I ENDED ALL TREATMENTS ON 2/05/2010........

    I have not had any reconstruction at this time. Just not sure IF I am ready. I am gonna go the end of the month to get consultation on fat transfer.

    Trying to live PAST this HORRIBLE experience. I DO live in fear ALOT. I am a wife and mom of three. I HATE THAT CANCER CAME UNINVITED INTO OUR HOME!!!!!!!!!!!

    May God Bless Us All 

  • angelsabove
    angelsabove Member Posts: 39
    edited May 2010

    Oh yes.....I do have my port and go monthly for port flush. I see my Oncologist every 3 months and she wants to scan every six months. OH BOY I SEE HER MIDDLE OF JUNE and she wants to scan before I see her.....I WILL PRAY PRAY PRAY for NED......

  • violet7
    violet7 Member Posts: 22
    edited May 2010

    Hi everyone!  I was dxed in October 2009, age 44.  The lump was found on a CT Scan to see if after a year I was still clear of Stage 1b1 endocervical cancer - I was, but I now had breast cancer.  I was regular w/ my mammograms and had never had an abnormal reading, nor is there a family history.  I had felt my "lump" for a few months, but couldn't be certain it was actually a lump.  Everyone who felt it said the same thing.  It kind of just felt like breast tissue.  But for a few years the site of the lump and under my arm had had twinges of pain that seemed to occur with hormonal fluctuations.  I had a bilateral masectomy: Stage 2B IDC triple neg with positive sentinel node.  About 6 weeks after the surgery I had a PET Scan to determine if I had mets and came back "cancer-free" in my onc's words.  I did 6 TACs - every three weeks.  Ugh!  I will get a CT Scan in June (and every 6 months because of the 2 cancers).  My biopsy results did show some hormone positivity, but my surgery pathology was "cold negative"  again my onc's quote.  After chemo my onc offered me Aromasin, an anti-hormonal, to take in the event that there is some hormonal action going on there.  I chose to take it.  In October 2008 I had a radical hysterctomy including ovaries out, so Aromasin was the pill I was prescribed.  I truly believe that triple negative bc starts out hormonal (I base this on the personal fact that my breast ached right where it eventually became cancerous during hormonal flux).  I had always been estrogen-dominant, my endocervical cancer was glandular, and breasts are glands.  I believe it starts out hormone-positive and then flips.  I read an article on a study that proposed this, but I can't seem to find it now.  If I ever do I will share.  I'm currently trying to stay in my happy place, walking an hour a day, going to start back at the YMCA tomorrow, been gardening and Spring-cleaning, lost 8 chemo lbs. with more to go.  I plan on being reconstructed in August.  Thanks for starting this thread, Titan.

  • Issymom
    Issymom Member Posts: 27
    edited May 2010

    Hi, I was diagnosed one month before turning 47.  The ultrasound showed it was small (8 mm) and so I thought this was not going to be a big deal, lumpectomy and rads.  I met with my BS on Nov 5, 2009 and I immediately knew he didn't think it was no big deal.  He explained that it was Grade 3 and TN.  When I met with my onc, she said that it had one of the highest mitotic (cell division) rates she had seen.  My BS suggested I do the genetic test because of the TN, my age, and the fact that my paternal grandmother died from BC in her early 50s.  I was fortunate to be able to do the test right then and found out my results a week later, BRCA1+.  We have now found that my sister is positive as well.  She is 40 and just had her first mammo, everythings OK.  Anyway, I chose Bi-lat because of the BRCA1+, I didn't want to go down this road again.  I had my bi-lat 2 days before my 47th birthday.  My BS said I would never forget this birthday as it was the one in which I got rid of my cancer.  I did 4 bi-weekly DD A/C treatments follow by 4 DD Taxol.  I had my last Taxol on April 21, 2010.  I am now on hair watch.  I am scheduled to have my port removed in two weeks (yeah).  On June 4th, I am going to have a hysterectomy and then I going to enjoy the summer without treatments, surgeries, etc...  I am walking the 3 Day Walk for a Cure with my sister in late September.  Lots of walking between now and then.  I will start recon in October (implants).  This time next year, I will be done!!!

  • katherineINswitzerland
    katherineINswitzerland Member Posts: 1
    edited May 2010

    Wow.  What an amazing -- and diverse -- group of women. 

    I have spent the last five months reading -- but not responding to -- the wonderful/sad/humorous/angry/thoughtful/helpful posts throughout BCO.  I endured three 21 day sessions of FEC and three 21 day sessions of Taxotere and it was all I could do to read; formulating a response to any of the posts was far beyond my capabilities.  I did not fare well during chemo.  I was hospitalized many times, I lost 21 pounds during the first three treatments (but put it all back on during the second three, thanks to the steroids!), I had numerous infections (including a kidney infection and pneumonia), I had every side-effect known to the medical profession (the worst of which were fingernail loss, fungal infection in my armpits, mouth ulcers, constant diarrhea and vomiting the first 60 days, neuropathy in feet and chemo brain), and I did not really get out of bed until I began radiation two weeks ago.  (Radiation is a BREEZE compared to chemo!)

    I found my lump in September of last year, the day before my mum was due to arrive for a visit from the US and two days after my 9 year old son fell while skateboarding and broke two bones in his arm.  The day after my mum arrived (I did not tell her about the lump) my neighbour and good friend had a massive aneurysm and ended up in the hospital (for three months, but that is another story) so I needed to help take care of her children.  Needless to say, I did not go in to see my doctor straight away.  I had read that if one finds a lump one should wait through a complete menstrual cycle to see if it changes -- so that is what I did.  It did not change.  Hoping that it was nothing more than a cyst, and wanting reassurance, I did a bit more research on the web.  I wanted to know what a breast tumour *felt* like.  The answer?  Pitted like a golf ball, whereas a cyst feels smooth to the touch.  It was then I knew I had breast cancer and that I needed to get in to see the doctor straight away.  Mine felt exactly like a golf ball.

    So, one lumpectomy, one re-excision (original tumour--IDC, 2.4 cm, grade 3 TN; re-excized for three small areas of DCIS, also TN and grade 3), one port placement (in my armpit--no scar!), one node (negative) removed, three FEC, three Taxotere, too many Neupogen shots to count, too many Ipo shots to count, many scans and exams and hospital visits later and here I am.  My fingernails (what is left of them) are painted a lovely (and hip) gunmetal blue colour to hide their horrific state, my hair is slowly growing back in (I'm at the stage where I look like an ageing convict, complete with bald patches and receding hairline), I'm undergoing radiation (which is, again, NOTHING compared to chemo!), I'm eating like a pig and loving it and I'm finally able to play with my two young boys.

    Thank you for all of your posts.  I have learned so much from everyone over the past five or so months and I am grateful.  I hope that someday I will be able to help all of you the way that you have helped me... 

  • kane744
    kane744 Member Posts: 52
    edited May 2010

    Don't want to interrupt the flow of this topic by talking about lymphedema.  There is a discussion board specifically for it, filled with info.  You can also go to Step Up-Speak Out online.  Very educational.  But briefly, Titan, it starts with an achy, burny, itchy, full or tight feeling which soon develops into obvious swelling that won't go away.  If unmanaged, It can lead to life-threatening infections.  When managed, it involves daily attention.  And, yes, studies have shown that you can get it anytime in your life after bc surgery, even if you've had only one node removed.

     I have a question.  Since we TNers have more concerns about our cancer coming back elsewhere, what do your drs say to do to discover it early?  I had to beg for a scan, which I'm having in August--brain, lungs, kidneys, liver.  I don't think this is an over the top request since I'm not yet at my two year mark.  When I reach that milestone, then I'll shut up.  A little.  Maybe.  My onc. keeps talking about my low percentage of recurrence.  I pointed out that I hadn't done too well with her percentages thus far.  Only 20% of women who have biopsies are malignant.  ME.  A very low percentage (forget the number, still have chemo brain) are TN.  ME.  According to their info, a mere 6% develop lymphedema (outdated info, by the way).  But again, ME,ME,ME.  So give me my scan, please.  And along with it, maybe a bit of peace of mind for awhile.  I guess since they dropped the ball with the lymphedema, I got what I wanted.  Bitter?  Only when I first arise!    

  • jenweg
    jenweg Member Posts: 55
    edited May 2010

    I would like to join the group.  I was diagnosed with bc in March, 2010.  Had a bilateral mastectomy on april 16.  Went in to meet with my bs a week after surgery and was told I had a very favorable outcome.  No nodes involved, staged at IIa.  Now a couple of days ago I met with my oncologist to start treatment phase and was told I am triple negative.  I have been sick since I found out.  Haven't eaten in a couple days and sick to my stomach.  I am scared to death now.  I wasn't before finding out about triple negative but now I am.  I have to go through scans to make sure it has not spread anywhere and I am scared to death of that now too.  Sheeze I was fine with this before I found out about tn.  Sorry to vent.  Just have to get it out somwhere.  Thanks for listening.

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

    Hi jenweg...If you go to lbbc.org, they have a free download called The Guide to Understanding Triple-Negative Breast Cancer, it might help to alleviate some of your fears.  Click on lbbc publications...then books and publications..scroll down and you'll find it. 

    Anna

  • mamaof3bugs
    mamaof3bugs Member Posts: 5
    edited May 2010

    Diagnosed at 37 and two weeks.  3x3cm tumor, lumpectomy, DD ACx4, taxol x 4 and 36 rounds of radiation.  This group is so young and getting bigger by the minute :(  Here's to kicking the crap out of TN BC!!!

  • JerseyMom
    JerseyMom Member Posts: 1
    edited May 2010

    Diagnosed at age 34 (2 weeks before 35th birthday), 3 months after my son was born. The tumor hurt and that is why I saw a doc. No reconstruction yet...if I make it another year, I might consider it. My signature says the rest.

    -Ren

  • [Deleted User]
    [Deleted User] Member Posts: 61
    edited May 2010

    Ren, it's pretty obvious you're gonna make it another year...

  • kane744
    kane744 Member Posts: 52
    edited May 2010

    Jenweg:  Get this one.  When I first learned I was TN, i was thrilled!  At last, I wasn't POSITIVE for something!  Then I went home, started searching on the web, and my spirit sank.  Still, my onc doesn't think it's all that serious.  Try not to worry about the scans.  Painless.  The cancer center where I go tries to call the next day with results.  Request the same.  I've found you've really got to be a strong advocate for yourself.  Once I was told I was a bad cancer patient.  Just looked at her and laughed.  As someone later told me, it's the cancer that's bad, not me.  So fight hard.

  • HeidiToo
    HeidiToo Member Posts: 965
    edited February 2011

    I am a very active person, so when my cat stepped on a sore spot on my breast I figured it was where I had been bumped recently by one of my horses.

    Wrong--- it was a lump. When it did not go down I had it checked about two weeks later. Suspicious mammo followed by ultrasound, followed by core needle biopsy. Breast Cancer. End of life as I'd known it.

    2.2 cm, 100% p53, 97% Ki67, Grade 3 TNBC. Lumpectomy at Sloan-Kettering followed by 4 rounds CT and 32 rads. No LVI or nodes involved; clear margins.

    So far all follow-up tests (Cat scan, tumor markers, mammo) have been normal and at this point I am getting tired of thinking/talking about it.

    I was just getting back to some semblance of normal when I fainted this week, banged my head and then had a seizure. Just spent two days in the hospital getting more tests, all normal.

    So, other than a seizure and breast cancer I guess I am just fine. F*ck this.

  • pattypoo53
    pattypoo53 Member Posts: 3
    edited May 2010
    Hello,

    I was diagnosed in Dec 03, 50 yrs, atypical medullary, they treated it as an invasive ductal breast cancer, 2.8cm, triple negative, no nodes involved out of 28, no vascular invasion, clean margins, lumpectomy, 4xac then 4x taxol every three weeks, then 33 rads. I am alittle over six years out this month !! My birthday was on Nov 22,09 and I had never been happier to turn 56!! Its been a roller coaster ride for me, but I am here and doing great. Hang in there! I don't post much, but this board was a life saver to me when I was diagnosed in 03, I felt scared and alone. Everyone offered so much support to me. So far I am doing great, everyday is a gift.

    Hugs,

    Patty
  • navymom
    navymom Member Posts: 842
    edited May 2010

    Thanks for posting, Patty.  You made my day. 

    I am 1 year out this month.  Now that treatment and reconstruction are finished.......I am scared s#*tless about my future or really the possibility of not having one.  Most days I am very upbeat and thinking positively.  Doing the enjoying life thing and then something justs breezes in and those bad feelings are let in.  I hate those days.  I seem to be having more of them lately..maybe it is just that time of year for me.

    Navy

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

    Navy..since you are now coming up on a one year you are probably starting to have "flashbacks" of what was happening to you one year ago....I found myself looking back to one year ago on my calendar and thinking..oh I was having surgery today..or oh..I met with the onc today and found out about how much chemo I am am going to have....

    I hope this is normal!.As a matter of fact..next Friday..one year ago my hair started to fall out....Ugh....I guess I'm expecting it to do the same again..I don't know..the mind can take you to too many places!

  • riley702
    riley702 Member Posts: 575
    edited May 2010

    Patty: They took 28 nodes?!?

  • [Deleted User]
    [Deleted User] Member Posts: 61
    edited May 2010

    Taking 28 nodes is not such an unusual thing. Some ladies here lost 30 and 40 and I've seen even somebody with 54 nodes out.

  • wrsmith2x
    wrsmith2x Member Posts: 127
    edited May 2010

    Leprechaun, do you mind me asking how your wife found her initial bc and then how her mets were found?  You may have posted this somewhere else but I haven't come across it.  How is she currently doing?

  • [Deleted User]
    [Deleted User] Member Posts: 61
    edited May 2010

    wrsmith2x,

    When Olga was 28 or 29, I stumbled upon the lump in her breast. She went for the mammo, then US and they said it's a benign fibroadenoma. After a year or so she went for a check up again and got the same answer. So, it calmed us down. We thought this is nothing and forgot about it. Until it began growing VERY rapidly. When the biopsy confirmed it's cancer it already spread to one node and was 7.5 cm in size. Olga had 3 x FEC, 3 x Taxotere, a mastectomy and 35 rads. The tumor shrank threeefolds after the chemo and before the mastectomy. Actually, they found those benign fibroadenomas too, side by side with the tumor. So the initial diagnosis was correct. It's just... It switched our radar off...

    After enduring all that, she was declared NED and we went to live and enjoy our life. And then 9 months later she had a flu. Then her groin nodes began to swell and thigh pain started. A local hospital told us it's lymph infection and gave antibiotics. After two weeks  her regular BS performed a node biopsy "just in case" and it came back positive. And then scans and the ball is rolling since then for half a year already.

    Topics (everything's there):

    http://community.breastcancer.org/forum/106/topic/744908?page=1 

    http://community.breastcancer.org/forum/8/topic/748481?page=7 

    http://community.breastcancer.org/forum/8/topic/750010?page=4 

    Currently she's feeling relatively OK given the chemo SE (fatigue and occasional nausea and weakness); and there's a blood clot in the lung.Two more cycles to go.

    Thanks for asking and take care,

    Yan.

  • retrievermom
    retrievermom Member Posts: 321
    edited February 2011

    Patty:  That is wonderful to hear.

    Kane:  I was like you.  No node involvement, clear margins, negatives; that's good, right?  My doc never said "triple negative."  Just "nasty biology" and recurrence rates.  I love that you were criticized for being a bad cancer patient.  What, you demanded something?  Complained?