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Ladies in their 40s

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  • LoveLee
    LoveLee Member Posts: 1
    edited February 2014

    I want to joining too :-)  After reading all the post, I think im the oldest one here.  I am 46yrs old, diagnosed at age 43. Like many of you, no history of bc in my family...(plenty of other cancers).  I have been married for 27 years to my high school sweetheart, 3 daughters, 26, 24, and my 19 year old baby who is moving into an apartment next month :-(   I couldn't wait to be an empty nester, now I don't want to let her go. Three grandsons 4,3,2 that keep us BUSY!!!  I have done chemo, rads, dbl mast, reconstruction, hysterectomy, and not had any SE.  My dr's said I was truly lucky...hmmm...me lucky???  Fast forward now on to Aromasin.  I feel like I am 90 years old!!!  My joints ache, back hurts, leg hurts, you name it and I bet it hurts. Did I mention weight gain..YUCK.  My dr doesn't do regular scanning.  I have asked her before if I could have one because of all my aches and she said not to worry it was a SE.  I was wondering how often you guys get scans? I have an appointment 3-12 and I will ASK AGAIN!  Thank you for starting this thread YoungTurkNYC.  I have been a lurker for some time now, I guess its time to come out of the closet LOL

  • shoppygirl
    shoppygirl Member Posts: 110
    edited February 2014

    ycats

    My 15 year old son has Aspergers too. I totally agree that being honest with them is the best thing. I will never forget the night my son asked me if my breast cancer would ever come back. I told him that there is always a chance of that happening. He them told me that if it does and I needed a bone marrow transplant then I could have some of his bone marrow !  Makes me want to cry just thinking about it. Kids are so smart. 

  • Jennt28
    Jennt28 Member Posts: 1,095
    edited February 2014

    LoveLee - you can start feeling not so old again. I'm reading along and am nearly about to turn 49... Diagnosed at 46yrs and just had my nipple reconstruction done last week!

    Jenn

  • ycats70
    ycats70 Member Posts: 22
    edited February 2014

    Okay, I'm sure this it the tamoxifen talking, but I started crying on my way home this morning from dropping off my daughter at school because of a song on the radio!  It's Roar by Katy Perry, and for some reason it made me think about cancer instead of her intention of it being about a guy.  I'm gonna put some of the lyrics here, and I hope it will inspire some of you the way it did me - most of us have already done surgery, chemo, rads, or some combination of those, so I think it will resonate with you :-)  Or maybe I'm just an emotional mess today. xoxo

    "Now I’m floating like a butterfly
    Stinging like a bee I earned my stripes
    I went from zero, to my own hero

    You held me down, but I got up
    Already brushing off the dust
    You hear my voice, you hear that sound
    Like thunder gonna shake the ground
    You held me down, but I got up
    Get ready ’cause I’ve had enough
    I see it all, I see it now

    [Chorus]
    I got the eye of the tiger, a fighter, dancing through the fire
    ‘Cause I am a champion and you’re gonna hear me roar
    Louder, louder than a lion
    ‘CAUSE I AM A CHAMPION AND YOU'RE GONNA HEAR ME ROAR!"

  • BetterDay
    BetterDay Member Posts: 9
    edited February 2014

    ycats70, I used to cry every time I heard that song.  For some crazy reason, it would always come on the car radio when I first started chemo and was driving to my treatments.  Now I hear it as more of an anthem.  And thanks for the p53 info!

  • youngturknyc
    youngturknyc Member Posts: 115
    edited February 2014

    Ladies - thank you so much for your support and suggestions about my son.  I have been honest with both of my kids (twins) about the cancer as well, but sometimes I feel like perhaps I could have sheltered them a bit more from the whole experience.  That's why I blame myself not because I got the cancer over which I had no control.  Unfortunately my cancer is genetic - I have been a healthy eater all my life; mostly plant based diet with some fish; no red meat; running half marathons; never smoked; barely drank (now I have fully eliminated alcohol); never overweight etc. Basically, I had done everything you see on those "how not to get cancer" lists that doctors publish. My healthy lifestyle could not trump the genetic component, however, and I worry my children could have this too.  The other day my daughter asked whether she, too, would get breast cancer as I have it and my mother has it.  I told her she is too young to worry about these things.  But at some point, I will need to address this issue with her.  When my mother was diagnosed with her metastatic recurrence, she did the BRCA testing and it came back negative.  Based on this, I was told that a prophylactic double mastectomy was not warranted when I sought out the opinions of several doctors (all of whom said no).  Of course, now I wish I had been much more forceful about what I really wanted.

  • audra67
    audra67 Member Posts: 127
    edited February 2014

    I'm 46 also...you're not the oldest! :)

    Seems like we are all in shape, and did the things to 'prevent cancer' - interesting isn't it?

    I am done with chemo now and going to start Tamoxifen next week...and I still feel shocked/mad/upset/changed forever by this.

    It snowed here today and my 15 yr old needed picked up as early dismissal, I don't feel confident to drive in the snow with my 'weakened' state...I drove yesterday and my arm where port was removed Monday side is sore and not able to move the best...anyhow all this to say..I used to be fearless and could drive through snowstorms or feel like I could do anything...this has really hit my confidence in myself and I just feel less strength and courage...

    I am hoping that will come back with my physical strength...and that will be my goal...NO FEAR!  I HATE being this weakling..or feeling 'scared' to go places and do things...

  • youngturknyc
    youngturknyc Member Posts: 115
    edited February 2014

    audra67,

    I hear you.  I went from running half marathons to no exercise, and I have just started walking/running again, and I could not even run 3 miles yesterday when I used to run 6 or more miles several times a week.  I have shoulder pain and shoulder mobility issues from the mastectomies and Femara.  Neuropathy remains from Taxol.  It is very hard to get over what happened psychologically, with these daily physical reminders.  In addition, the fear of recurrence remains.  My Onco score/ki67 were very very high - in the "I have never seen a score this high" territory.  However, I wake up every morning thankful that I am still alive, and that it could have been a lot worse.  I still have today to live. This permits me to focus on making that particular day a good day filled with happiness - no complaints.  Today is all that we have. Cliche but true.  This is my coping mechanism.

  • Lilysdaughter
    Lilysdaughter Member Posts: 8
    edited February 2014

    reading all these treads I see that parts of every thread could have been written by me. I might be the oldest at 47.  I also have 3 kids the youngest 14 in counseling with anxiety.( she is doing extremely well thanks to her awesome counselor and an amino acid l-theanine) I also lived very healthy eating meat occasionally am skinny,... My mom passed away at 48 I was 20 so I was on our kids side for many years still remember like it was yesterday when my parents told me. Last June I was the one telling my kids. I recognized myself in them knew exactly what went though their heads while I understood how my mom must have felt. This is what I tell my kids now 30 years ago there was no cure you got diagnosed and that was it. If you see how far we ve come in 27 years we now have good survival chances. Imagine in worst case scenario that our kids would inherit this in another 28 years their chances will even be better.   I am very scared too I had cancer in both breasts they found 3 different places according to my oncologist very unusual (so yougturkNYC I understand what you mean)that is why I had double mastectomy I can not take any tamoxifen either. It is not an easy ride and it comforts me to read all these reactions.

  • girlstrong
    girlstrong Member Posts: 299
    edited February 2014

    So I am in the midst of growing my hair; still have a long way to go but everyday I check for more. Tonight as I was walking in the house without my wig, my 11 year old son says "you alright mom?" ; "Sure" I say..."I'm just sad that my hair is taking so long to grow " . His response was..."mom, it doesn't matter because your getting through this and your here...your alive and going to make it, that's what is more important than your hair" I almost started to cry and didn't quite know what to say. We hugged and I feel so blessed to have such a wise and loving son. 

    It still takes my breath away to know what my children are going through; they are along this ride either me....

  • jenwith4kids
    jenwith4kids Member Posts: 216
    edited February 2014

    I am so definitely joining this thread!!  I am 46, was dx'd on 1/8, have my BMX scheduled for a week from tomorrow...Valentine's Day!  I have four kids (hence my user name lol).  My 43 year old sister was dx'd a few weeks after me and is also scheduled for a BMX ten days after me.  I'm scared, but so far I do have some good news! While I have IDC on the left breast my surgeon thinks my nodes are clear though there was cancer in that biopsy it was breast tissue not lymphatic tissue. I also have DCIS in the other breast, and my MRI showed two other spots - one in each breast - that US didn't pick up...not doing further biopsy, they can look at the whole shebang once they have my boobs on the lab!  I chose to do implants over DIEP based on required recovery time.  My BRCA was negative (wonder what my sisters will be), all the cancer in our family is three generations back.  I also had a PET scan ... Which came back normal (I actually slept that whole night!)...

    My kids are 10, 12, 13 and 15... Three girls, my son is the 13 year old.  All reacting in textbook fashion. They are open and talkative.  Scared but understanding that ultimately I will be fine.

    More later, I'm looking forward to getting to know you all, just wishing it was under different circumstances!

  • CaliKiwi
    CaliKiwi Member Posts: 19
    edited February 2014

    Welcome everybody. Thanks for sharing your stories. Those of you who shared words that your children had given to you brought tears to my eyes, both for the loving support your children are giving and also a little sadness for the fact that our loved ones have to go through this journey with us.

  • juneping
    juneping Member Posts: 634
    edited February 2014

    hi everyone,

    i am 41, had my based line mammo done when i was 39, my doc recommended me to do so. got a call back and found nothing. i thought it was unnecessary and scarey so skipped a year. and few months ago found a lump and here i am. 

    i am single and not looking. just felt very tired and need to rest and feel like whole again. glad to meet you all. Nerdy

  • agness
    agness Member Posts: 406
    edited February 2014

    Hi all,

    I just joined this crazy roller coaster this week. I had a mammogram and ultrasound last week and they were very concerned so they got me in for a biopsy the same day as there was an opening in the schedule. Today I had an MRI and met with a cancer care team for a long consult.

    I am 43 and the mother of two young boys, ages 7 and 3-1/2. They have deduced that mommy is sick. I will provide more details as the timing seems right.

    My dx so far is:

    ICS and DCIS, Stage 3B pending. Grade 2

    HER2+, Estrogen/Progesterone negative pending additional biopsy for healthy control tissue sample.

    The plan of action is:

    PET/bone scans next week

    Place port the following week 

    Chemo and anti-HER every three weeks for 6 tx over 18 weeks. Then scans to see how things look.

    Breast conserving surgery to remove the lump and nodes

    Radiation

    Anti-HER tx for a year.

    I'm worried about how this will affect my kids, how I can be "mommy" center of their universe in the midst of this, afraid of being disfigured, lymphadema and of course -- dying and not being able to see my kids grow up.

    The cancer team were extremely positive and were willing to patiently answer our most challenging questions.

    I will use complementary medicine during my treatment including acupuncture, Lomi Lomi massage, qi gong, and following TCM diet principles matched to my particular patterns of disharmony.

    Wish me luck and I though I wish I wasn't here, I look forward to getting to know many of you.

  • oranje_mama
    oranje_mama Member Posts: 79
    edited February 2014

    Welcome to all who have joined.

    Agness, your diagnosis/treatment is similar to mine.  I was diagnosed with HER2+ cancer in November, started chemo -  6 rounds of TCH over 18 weeks - in December.   I'm also planning on breast conserving lumpectomy after I've recovered from chemo.   Where you are now - with all the testing, waiting for results, digesting answers - is so hard.  It gets easier.  That's easier, not easy.  I'm halfway through chemo and I feel like I see the light at the end of the tunnel, although it's one damn long tunnel.

    My husband is always saying that as tough as it is to go through this with younger children, it somehow also makes it easier.  You have such a clear reason to put yourself through hell and back to survive.  And my girls are also so sweet to me.  So many hugs.  So many hilarious pronouncements from my 6 year old - such as, after studying me intently, "don't worry mommy, even though you're bald, you still look like a girl."

  • babyduck
    babyduck Member Posts: 32
    edited February 2014

    Hi Ladies! Joining your thread! So glad to have good company!! Had baseline mammogram at 36. Lost 60 lbs in 2012...wanted to. Like others of you...working out trying to get in better shape. Found lump middle of Dec. Turned 40 Dec. 30th... DX Jan 31st. Whew! So now I've seen the surgeon, the plastic surgeon and will see the oncologist Mon. Kinda getting my ducks in a row before I start. Surgery will come first....that is my hard decision. Do I one side? Both sides. Not doing a lumpectomy already made that decision... Do I want to worry constantly but don't want to do more than necessary...I'd love opinions....so sorry we have to go through this so thankful for good docs and my support system...I am a christian..I will be praying for us all!!

  • youngturknyc
    youngturknyc Member Posts: 115
    edited February 2014

    Hi babyduck - I am so glad that I had BMX as my left breast was hiding extensive DCIS which did not get picked up by mammo, sono, MRI or PET.  I did not want a sword hanging over me, and I was right.  My BS was not a huge fan of BMX (although she was more neutral about it than against it); she just has a "surgical" approach to the treatment of BC.  Then she said - "you were right - good decision".  I know everyone is different in diagnosis, stage, type of cancer etc. So, there is really no right or wrong answer.  Just what is right for you.  I just wanted to chime in to say that BMX was not that bad - I am not sure one mastectomy vs. two makes that much difference in terms of recovery or future issues.  It just gives me peace of mind that I did all I could.

  • babyduck
    babyduck Member Posts: 32
    edited February 2014


    Thx for the reply YoungTurk....I'm thinking BMX just to know that if is comes back it won't be in those ducts....:) Did your plastic surgeon need an MRI? General surgeon doesn't if I do BMX... Just wandering. I'm feeling better about this whole thing... better talking to people. Thanks for being there.

     

  • youngturknyc
    youngturknyc Member Posts: 115
    edited February 2014

    The MRI was ordered by the radiologist after the sono and mammo and the biopsy (which all happened on the same day) before I was officially diagnosed but he already knew that there was a very high chance of malignancy.  So, my breast surgeon already had the mammo, sono and MRI results when I met with her.  She ordered the PET. 

  • girlstrong
    girlstrong Member Posts: 299
    edited February 2014

    hi friends, no easy decision about a BMX vs UMX. For me I chose BMX for a couple of reasons....1: I had already been told to come back in 6 months to check on my non cancer side because of calcification....I did not want to constantly monitor and potentially go through this again!! 2: easier to reconstruct 2 vs 1 breast from a plastic surgeon standpoint 3: I wanted to do all I could to minimize any type of recurrence..bottom line. 

    I am 1 week out from my BMX and sore but healing. Best wishes in all the decisions we have to make with this diagnosis. 

  • audra67
    audra67 Member Posts: 127
    edited February 2014

    I agree with you all that we do have a lot in common!  And I HATE that our children and husbands have to go through this...it has been very sad and hard on me to feel that I 'cause' them pain...even though not my fault...or wish for sure..

    I had BMX also - nipple and skin sparing...and implants as no stomach to take from otherwise I would've done diep flap...but EVERY DR I have seen since then said ' good job doing mastectomy' even ob/gyn I recently saw= and they all said they would do the same..

    Plus a girl in my chemotherapy infusion room was talking to me and she had BMX but had one breast with tumor and during surgery they found an 8cm tumor in other breast that went from one side to the other HUGE and it never showed up on her MRI...!!!!  So you just never know...

    Plus I sortof knee jerked and wanted them off and to not worry of it coming in other side...I am type A, used to be nurse, probably OVER worry about health...

    So that's my two cents on BMX...but I know everyone is different and it would be nice to have REAL breasts still...

    I am 3 weeks out of chemo and still not back to 'normal'...very tired throughout day and able to do maybe 5 hours nonstop things or laundry/house things/showering/etc...and then just exhausted..so that's frustrating but I know it will take some time to heal and regain energy...still using Ativan to sleep at night...probably should try to quit that soon...still having times each day that a bad thought/worry of future comes in but those are lessening and not having 'days' like that any longer...feeling more positive- I think no more chemo really helps..starting Tamoxifen next week...I wonder what new side effects that will bring..

    I am thrilled with all of your positive attitudes and WE WILL PREVAIL!!!  Thank God the treatments are so much better than 30 years ago!  We are very fortunate...I always think at least I wasn't killed in car accident or something I couldn't fight....We are blessed to have an option...:) 

  • bluewillowskys
    bluewillowskys Member Posts: 268
    edited February 2014

    see....this is what scares me...i got my mammo results today in the mail and it said "normal"....i really feel the need to get an MRI...i asked my BS nurse a week ago by phone and  nurse brushed me off and they still havent returned my call. I need to see my onco asap and get that MRI.

  • ycats70
    ycats70 Member Posts: 22
    edited February 2014

    hmmm, me too bluewillowskys.  A MX was never even discussed with me - I was just told I had a malignant tumor and we scheduled the date for the lumpectomy.  In my pre-surgery MRI they found a questionable spot on my other breast, but a US showed it was nothing.  Went back 3 months later for another MRI and it was clear.  But makes me wonder, as I know not all of these scans pick up everything.  My Mom had to decide between a UMX and BMX when she was diagnosed 5 yrs ago.  She chose BMX and they found suspicious cells (I wish she had more info but that's all she remembers) in the other breast so she was so glad she chose that.

  • bluewillowskys
    bluewillowskys Member Posts: 268
    edited February 2014

    YCATS: is there anyway you can go back to your moms doctor and find out what her path report said?

    Im pretty miffed that there is no mention of HER2 status or oncotype in my report. The only results i have are from the biopsy. There is no mention of any testing done on the lumpectomy.I found out i can sign up online to get access to my health chart but it takes 10 days to send me an activation code :/ But i plan on reading my files top to bottom as soon as i get the chance and im going to question my onco as to why those tests were not done.

  • Momof3GreatKids
    Momof3GreatKids Member Posts: 285
    edited February 2014

    Thanks for starting this thread!  I still need to catch up on all the posts, but wanted to join. I was diagnosed almost 2 years ago now a week after I turned 42. I have one son age 16 and two daughters ages 13 and 11.  You can see my treatments below and it was rough, but I made it through and am doing quite well now. I was allergic to taxol chemo and was burned really bad by radiation, but a year after all it can finally day I am doing quite well. I am most worried about my kids as I am BRACA2 positive. I was told that my girls will start getting mammograms in their early 20s since I was diagnosed so early. 

    I look forward to getting to know all of you better and know that we will all be able to help each other out!

  • youngturknyc
    youngturknyc Member Posts: 115
    edited February 2014

    Hi Momof3GreatKids - welcome to the thread!

    May I ask you a question? It seems like we have done similar treatments, and I was wondering whether there was a reason as to why you switched from Femara to Arimidex.  Was it due to side effects or a different reason?

  • ycats70
    ycats70 Member Posts: 22
    edited February 2014

    bluewillowskys thanks for the suggestion.  I asked my Mom to go back and get more info - asked her to actually get a copy of her path report.  She called her MO, apparently did not understand what to ask and came back to me happily saying that there were no worries, she had the slower growing cancer.  DUH!  She did no chemo and no rads, just the BMX.  Now she doesn't want to call again and "bug" them - she's not getting my concerns.  Her attitude towards her whole process was to just plug along, do what the Dr.s said, don't ask questions or do outside research because that's just looking for trouble.  She never researched SEs because she didn't want to invite ideas.  We have approached our circumstances very differently!!  I don't blame you for wanting to know your HER2 status, or for wanting all info on the lumpectomy - knowledge is power. I think it's standard procedure to test the lumpectomy (not sure but it seems like it), so maybe they just forgot to give you a copy? (Or like my mom's MO maybe you have to request it?)  Plus they'd need to know HER2 to know whether to give you Herceptin or not.  Just FYI, the Oncotype is not standard procedure for all MOs - mine opted not to order it because she said she would still recommend chemo even if it came out low, and I agreed with her so we didn't ever order it.  She said if it did come back low it would just make me more worried that the chemo wasn't working, and if we were doing chemo anyway, I needed to be as positive about it as I could.  There are days it drives me crazy not knowing that number, and I actually asked her 2 weeks ago if we could order now after the fact - she thought I was nuts and said insurance would never pay for it now anyway.  Sigh.

    Momof3 and YoungTurk,  do you know how they select your AI in the first place?  Can't seem to figure that piece out, and I know there are several to choose from.

  • ycats70
    ycats70 Member Posts: 22
    edited February 2014

    bluewillowskys, so sorry - I just re-read that your tumor was DCIS.  I think that's why no HER2 status on your path - from the little I know of DCIS I think they are just now looking into whether HER2 status makes a difference in treatment.  I don't think it is yet standard procedure to test for HER2 in DCIS, because they wouldn't routinely do Herceptin anyway.  I might be wrong on that - I bet there is a thread on this site you could find about it to learn more.  But that very well might be your answer as to why you can't find it on your path???

  • AmyfromMI
    AmyfromMI Member Posts: 115
    edited February 2014

    hi ladies!  From what I've read, femara works better with ILC and arimidex better with IDC on post-menopausal women or on women who've gone into chemopause.  Wish I had some links or stats to post but I don't.  Sorry.

  • jenwith4kids
    jenwith4kids Member Posts: 216
    edited February 2014

    ycats - do you know why your MO recommended chemo regardless of oncotype? I'm just curious.  I don't have complete pathology yet since my surgery isn't until Friday, but my biopsy pathology looks like what is in your signature. I'm afraid to not have chemo...but I think my score will be low.  I see you had a lumpectomy, I am having a BMX, maybe she suggested chemo because you had the lumpectomy? 

    So try for being nosey, I only just began my journey and the research is killing me!  My sane brain knows that I only know what I know and that I have to wait for pathology....bit that's hard to do!

    TIA!

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