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Ladies in their 40s

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  • bluewillowskys
    bluewillowskys Member Posts: 268
    edited January 2014

    Hello all:) I was diagnosed in April 2011 with DCIS grade 2. The first BC in my family. I had lumpectomy and raidation. I did one year of Tamoxifen , but the side effects were too much for me. I was miserable with joint pain and weight gain. The past few weeks Ive been considering having a BMX. I am very fearful of a recurrence or new cancer as Im not on the tamoxifen. I deal with OCD and depression/anxiety and the worry for months before my mamo every year is stressing me so much. Saw my BS this week and she is sending me to a PS to discuss my options since i had rads. SHe is against fat grafting as Im er/pr positive. SHe was against a BMX as I had radiation, but suggested a small implant. I am requesting and MRI to help me to decide. I moved my mammo up two months early as Im so concerned. I have it next week and see two PSs between now and 2/19.

  • youngturknyc
    youngturknyc Member Posts: 115
    edited January 2014

    Welcome to the thread ladies.

  • youngturknyc
    youngturknyc Member Posts: 115
    edited January 2014

    bluewillowskys - it is a personal decision whether or not to have a BMX of course, but I have not regretted my decision to have the BMX one bit (granted I did have two large invasive tumors in one breast and "surprise DCIS" in the other which did not get picked up by sono, mammo, MRI or PET).  So, I was so happy I had the "prophylactic" breast removed - literally a ticking time bomb.  But obviously, outcomes are very different for each and every person.  Another patient's DCIS may never become invasive, and of course, it is a hard decision to make.

  • shoppygirl
    shoppygirl Member Posts: 110
    edited February 2014

    Hello ladies 

    I was Dx a year ago just before my 42nd birthday. Had a bmx as my mother had bc and then ovarian three years after. She is alive and doing great!! I had an ooph yesterday and am doing quite well. Still waiting for my genetic testing but this is Canada and these types if things take forever!  I have two sons 11 and 15.  If having BC last year was not enough, two months after my dx my hubby was dx with stage 4 colon cancer so we got to go through chemo at the same time. Lucky for us we are now both NED. He just had clean scans earlier this month.  It has been quite a ride but we are happy to be doing well now. Everyday is a great day!  

  • youngturknyc
    youngturknyc Member Posts: 115
    edited February 2014

    shoppygirl - so great to hear both you and your hubby are NED!!!

  • AmyfromMI
    AmyfromMI Member Posts: 115
    edited February 2014

    shoppygirl, awesome news that you and your husband are NED! Happy dancing on this end!

  • shoppygirl
    shoppygirl Member Posts: 110
    edited February 2014

    Thanks ladies!  

  • 2tails
    2tails Member Posts: 23
    edited February 2014

    Hello ladies, room for 1 more? I was diagnosed with DCIS at 43 now 44. Finished radiation and now on tamoxifen and doing great. Have the firsrfollow up mammogram coming up in April.

    Shoppygirl...congrats!

  • Gonein40
    Gonein40 Member Posts: 76
    edited February 2014

    Hello ladies, guess i'm joining this group also, diagnosed in sept/13 with surgery in Nov. Will be starting my chemo on the 11th of feb. also hoping that 2014 turns out better than 13 did.I have 3 girls, 27, 25, and 19, been married for 28 yrs, and my DH took this the hardest of all of us. No history in my family of BC, however lots of other cancers. My mother was diagnosed at age 35 with cervical cancer, my father passed away with lung cancer 17 yrs ago. I have had a a hyst 19 yrs ago this June.  I love this site, and look forward to hearing all of the stories on here .You all are so inspirational to listen to and to have so many of us going thru this together.  debi

  • youngturknyc
    youngturknyc Member Posts: 115
    edited February 2014

    2tails and Gonein40,

    Welcome to the thread.

    Gonein40 - good luck with your upcoming chemo.  I hope you will through it easily.  It was easier than anticipated for me.

  • Lilysdaughter
    Lilysdaughter Member Posts: 8
    edited February 2014

    I would like to share my opinion because I think every woman that considers a double mastectomy should have as much information as possible as it is not easy to figure out what is right for you. Especially now with on one side articles stating that to many people that have mastectomies don't need them and on the other side all the celebrities that are doing great after their surgeries and make it seem so easy. I am 47 they found abnormalities on my mammogram in May 2013 had lumpectomy on left side in June an MRI revealed cancer in right side,other lumpectomy in July. I would advise every woman that has abnormalities to ask for a follow up MRI.  In September I had a double mastectomy with expanders. December 20 th they switched for my implants. I am not sure that I made the right decision but what I do know I did not have information enough when I made my decision.  Let nobody rush you take your time and talk to people who know, not friends who mean well and say "if it was me I would..."  

  • ycats70
    ycats70 Member Posts: 22
    edited February 2014

    Good advice Lilysdaughter, to take your time and become well informed.  Has anyone else run into issues of people telling them what is best for them?  I know that it is well-intended, but I wish they could understand that there is not usually one clear-cut "right" solution, and that we are all scared and trying to understand our options and disease, and sometimes we just want our family and friends to hold our hand and tell us they will support us.  My favorite (which has actually happened several times) is when someone will say "well I had a friend who did blah blah blah and she's fine so you should do that" or "so you'll be fine too."  When I start asking questions about that friend's ER/PR/HER2, Ki67, P53, stage, grade….. they have no idea.  Although I hate that we all have to be here together, at the same time I am grateful to you all for sharing your stories and support!

  • bluewillowskys
    bluewillowskys Member Posts: 268
    edited February 2014

    I plan on requesting an MRI this week...i never knew before i had another womans journey blog that was even an option. If my BS doesnt order one I am switching drs until i find one that will order it. Im trying to decide on recon after my lumpectomy(an implant) or doing a BMX w/implants and being done with it all . I considered a DIEP but after reading all the women on here saying how hard it is on the body I changed my mind. I have family support but no one that could help me for weeks or months on end. I know theres is no guarantees with implants either but i find it the lesseor of two evils i think. I see a PS this week after my yrly mammo.  

  • CarpeVinum
    CarpeVinum Member Posts: 10
    edited February 2014

    Hi Ladies

    I'd love to join this thread also. I'm Wendy, 48 (but feel 23 still) living in San Diego with my hubby, 15 year old daughter and 8 year old son. I started my second time around with chemo on Jan 6th 2014 for 4 rounds of AC.

    I was originally dxd with triple neg st2 invasive ductal carcinoma L br in Jan of 2013. It was found during a routine mammo. They called me back for an ultrasound and needle core biopsy. I had a lumpectomy in Feb, no lymph node involvement. Started a clinical trial of Cytoxan and Taxotere in April for 6 cycles, 3 weeks apart. I felt like I had kicked this cancer's ASS! I lost my hair and my eyebrows (the eyebrows were the worst part!) gained 10lbs from the steroids, but I felt GOOD!

    I was at my double mastectomy pre-op appt with my surgeon and plastic surgeon to get all that pre surgery junk out of the way and mentioned that I had this nagging, unrelenting back pain that wasn't responding as expected to chiro, PT and massage. They poo-pooed me and said awww you're just anxious. I said *I'm not anxious! I'm thrilled to be getting on with my life and having new perky healthy boobs!* I insisted on an mri and 2 days later was given the bad news ~ St IV breast cancer had metastasized to my T4 spine. The worst part was waiting on the PET scan results. The tumor in my spine was the only spot they found. I don't think I've ever felt such relief.

    I had 10 rads in Nov 2013 , which really took away my pain, by the 4th rad I was virtually pain free. A month ago that old nagging pain that radiated from between my scapula to my right armpit was back and I was scared. My onc sent me for another mri (did I mention I have claustrophobia? gaaahhh) and to my relief there was no indication of new mets, just a compression fracture of T4. Phew. Who would have thought a fractured spine would be cause for celebration? So, I see my Interventional Radiologist on Tues who will perform a fluoroscopy and decide if I need a kyphoplasty (injection of cement between vertebrae) or if it's healing nicely on it's own.

    I am 8 days out from my second dose of AC last Monday. I have to say this chemo is more difficult than the first time around ~ not sure if it's because of the different regimen or if it's a cumulative effect of the rads and chemo...

    I'm really glad to have found you all :)

  • youngturknyc
    youngturknyc Member Posts: 115
    edited February 2014

    Hi CarpeVinum,

    Welcome to the thread, but so sorry that you had to join us here.  I am also so sorry that you have to deal with this again soon after you were done with treatment.  We are here to hear you out and support you!  AC is not a walk in the park but it is a cancer killing machine.  I hope that you will get to NED with the AC in no time!!

  • shoppygirl
    shoppygirl Member Posts: 110
    edited February 2014

    Carpevinum

    Welcome!  I too am sorry that you are dealing with this again so soon after your original dx. It sounds like your mets are very limited so I am sure you will get to NED in no time soon. 

    We are here for you! 

    Hugs! 

  • CarpeVinum
    CarpeVinum Member Posts: 10
    edited February 2014

    Thank you YoungTurkNYC and shoppygirl!

    2 more sessions with AC and then a PETscan in my future and I fully expect NED :)


  • Lilysdaughter
    Lilysdaughter Member Posts: 8
    edited February 2014

    hi carpevinum,

    Welcome I really hope you get some great news soon. I am from Europe (living in florida) my English is so so we have a saying don't know if it make sense to you guys but sometimes when it rains it pours but after rain there is ALWAYS sunshine. 

  • audra67
    audra67 Member Posts: 127
    edited February 2014

    LOVE that saying Lilysdaughter!

    I was diagnosed at 46 and finished TCx4 - 2 weeks ago...starting to feel better finally and have more energy...got port removed today...hoorayyyy!!

    Question for you all:  Seems some of you have had oophorectomy and some haven't...what is the criteria for that?  My MO says I do not need that but I had high Ki67 and er/pr positive...

    My period stopped after 1st chemo and I am to start Tamoxifen in 2 weeks...I am hoping I don't get period back meanwhile...or while on Tamoxifen.  I saw my gyn and she said I didn't need oophorectomy either unless BRCA positive, which I tested negative for...

    So wondering how/why some get removed or suppressed and others do not...

    I am wanting to do everything possible to prevent recurrence!

    I also want a PET just to make sure no areas anywhere...and my MO says no scans til 2 years after diagnosis!

    I don't LOVE that and think I will DEMAND one...??

  • shoppygirl
    shoppygirl Member Posts: 110
    edited February 2014

    Audra67

    Congrats on getting your port removed!! Yay!! 

     I have not had a perriod since my second chemo and I have been on Tamoxifen since August 2013.

    I had a ooph last Thursday and honestly it has been the easiest thing I have done during this entire journey.  The reason for me getting one is because my mother had early stage ovarian cancer three years after she had breast cancer.  She is still alive today and doing well.  In Alberta, Canada you can only get genetic testing if you have had cancer or I guess you can pay for it if you want to go private.  I am on the list for genetic testing but it can take up to a year for an appointment and then another 9 months for results.  After dealing with this and my strong family history I said enough was enough and was fortunate enough to find a doctor that was very accomadating and did the surgery for me laparoscopicly.

    I am very glad I had it done and was already experiencing all they post ooph symptoms due to the chemo and Tamoxafin so that did not concern me at all.

    I think it should be your decision on if this is the right surgery for you.  A few doctors tried to talk me out of it but I went with my gut and I am glad I did.

  • ycats70
    ycats70 Member Posts: 22
    edited February 2014

    CarpeVinum, I love your positive outlook! I know you will be NED at your next scan!  Good luck with the last 2 AC - I am guessing you are having a rough time due to to the cumulative effects more than anything else, although they don't call Adriamycin the "red devil" for nothing!  I became allergic to taxotere and had to switch to AC for my last infusion but I only had it once so it didn't have a chance to build up in me.  Your body has been through so much in such a short period of time.  I hope you are able to have help with your kids, meals, etc and rest, rest, rest.  

    Audra67 I am in a similar boat as you - Age 43, high Ki67 and P53, ER/PR both highly positive.  My Mom tested negative for BRCA ( but both she and my grandmother had breast cancer, so there is definitely some family link going on there).  My MO thinks that an ooph is "overkill" at this time because I was Stage 1.  She also doesn't do PET scans until further down the road unless she sees a reason that is warranted.  Chemo didn't stop my periods until after the second round, and they already came back less than 3 months later.  I've been on tamoxifen 2 weeks and am waiting to see what it does to them.  She said if they don't stop again in 2 months we will move forward with Lupron (suppression), but I'm wondering why not just do an ooph at that point?  I've not yet had a single side effect from tamoxifen and wonder if it's even working.  I'm going to ask her at my next appt about having a DEX scan to get a baseline for my bone density - osteoporosis is the one thing that scares me about the ooph.  

    Shoppygirl, thanks for sharing your positive experience with your ooph.  Did you get your bone density checked and if so is it in a good range?  I don't know anything about the results, scoring, etc.  I am so happy for you to hear that you did so well with it!

  • Gonein40
    Gonein40 Member Posts: 76
    edited February 2014

    Welcome carpevinum to our group!! I feel the same way about starting treatments, just want to get on with it to be able to live a normal life again, not that it was before, but better, cause we all have a new path to follow . Somehow when your diagnosed with this dreadful disease, you are given a choice to make new decisions,and I truly believe that is where we all stand today making new choices for a better life than before life.

  • oranje_mama
    oranje_mama Member Posts: 79
    edited February 2014

    YoungTurk, thanks for starting this thread!  I know there are lots of us 40s out there, but it doesn't feel like it sometimes.  One of the worst things about BC, I find that it makes me feel alone.  I *know* that I'm not, but it's the feeling I experience.  I am still coming to grips with the fact that I have this disease at age 42 - it just did not fit into my mental picture of myself (not that it would be anyone's mental picture!)  I am one of those people who has always been "so healthy" my whole life.  Even as I was going through the hospital for the pre-tests and port placement, every doctor or nurse had to comment on how "healthy" I was.  It was the first thing my BS said too - how good it was that I am strong and healthy so I would be able to do this aggressive treatment.

    Anyway, to introduce myself a bit better, I am 42, diagnosed in November with Her2+++ IDC.  I started with neoadjuvant chemo in December, am halfway through (woo hoo!!!), 3 more rounds to go, followed by lumpectomy, radiation, Herceptin infusions for the rest of 2014, and tamoxifen.  Throwing the book at it.

    I've got 2 daughters, age 9 and 6.  I've been married for 13 years.  Work fulltime (sort of, at the moment . . . ).  My daughters seem to be handling this remarkably well.  I'm really grateful for that.

  • BetterDay
    BetterDay Member Posts: 9
    edited February 2014

    ycats70, quick question for you.  What exactly is p53?  I've tried online research and didn't get much clarity.  I asked my oncologist, and she pretty much dismissed it as unhelpful in determining anything meaningful about the cancer or treatment.  But I've always been very curious as mine was really high (95%).

    Hi, Audra67, nice to see you over here!

  • girlstrong
    girlstrong Member Posts: 299
    edited February 2014

    Good morning, I am looking forward to joining this group. Having read several of the previous posts; I can tell that we all have a lot in common. I was diagnosed last summer at the age of 41. It was a shocker that came out of nowhere; I can still hardly believe that "this" happened to me. I'm not alone, but at times I feel that way. Up until this point in my life I never even knew anyone who had breast cancer except for one of my husbands relatives who died within 3years (not helpful in getting me mentally through this). I am happy to say that I am done with chemo, surgery, and now healing for a few weeks before I start rads. All the while I am continuing on Herceptin infusions every 3 weeks although my MO has told me that I may be starting a clinical trial. More to come on that. 

    Personally, I have 2 sons aged 8 and 11. I am so blessed that they seem to be handling this so well. My husband, kids, and family give me tremendous strength and support and I'm grateful for that. Still, I want to connect with others (like you all) who are going through this and who are survivors. 

    Blessings to each of you here. 

  • youngturknyc
    youngturknyc Member Posts: 115
    edited February 2014

    Hello Ladies,

    Welcome to the thread.  I am so glad so many of your kids are handling this situation well.  My 9 year old son just told me that if I died he would dig me out with his bare hands from the grave, and take my skeleton to his home and hug it for the rest of his life.  Talk about gut wrenching.  I hate this disease and the toll it takes both on us and our families.  I need to get him help.  I feel so guilty to have done this to him.

  • audra67
    audra67 Member Posts: 127
    edited February 2014

    YoungturkNY-

    I have three daughters...24, 21, and 15...our 15 year old is still at home and she has taken it the hardest...we are the closest too...she is straight A, cheerleader, student body treasurer,etc...and excels at everything...well everyone keeps telling me she is smiling and so happy and she about 2 months ago in the midst of this...said she thinks she's depressed, doesn't want to do anything, doesn't care about grades anymore,etc.  So got her in a counselor and that has helped...she bottles things up and it helps her to get it out and talk about it...she has normal teenage things plus this!  I also feel awful for 'doing this to her' and to my husband...but then again I didn't ask for this or do it to myself...

    I have always worked out religiously and was not overweight, very thin, eat Mediterranean diet and mostly at home...haven't had a soda in over 10 years...and I got it...

    Don't be so hard on yourself!  None of us chose this...and our poor family members will become stronger having gone through this and closer!  They will treasure you!  I BELIEVE we will all be around a LONG time...this is treatable!!!

    I have to say, I'm a little shocked at my oldest two daughters and their 'lack' of worry over this..at first they were but now my oldest is pregnant in her own world and our middle daughter is busy and we don't see or here from her for days some weeks.  Not that I want them to be upset, and maybe they are but just not saying...it's interesting how each person deals with it differently.

    Your son sounds like a sweetheart!!!  I know it KILLS us to have them worry or sad...

    I was VERY upset at diagnosis and VERY mad!  I have no history in my family either...I guess now I'm 'dealing' with it and getting used to it and now with the port out - it seems I'm on to the next phase of ' moving on'   that seems the hardest...

    I am seeing a psychologist and getting to a place where I am letting myself be angry, mad, worried, without worrying about it!  We DESERVE to feel however we feel, and it's so hard for others to understand...even our DR's...

    That's why I LOVE this site, as everyone GETS IT...

  • oranje_mama
    oranje_mama Member Posts: 79
    edited February 2014

    YoungTurk, oh, that's so hard to hear.  Have you talked to the school counselor?  Maybe that is a starting place for your son to have someone to talk to about this?  Maybe the counselor can recommend a child therapist?

    Initially, telling my daughters was the thing that stressed me out the most.  I read everything I could about talking to your children.  One of the pieces of advice was to never promise that after treatment, the cancer would be gone and that I would be well again.  I was like, what???!!  really???!! I can't tell my 6 year old that mommy's cancer is going to be gone after all of this?  I mean, why the hell not, since I fervently believe this myself?

    I decided that the book I read with this advice (Caring for your children: when a parent has cancer) was out of date, at least for my type of cancer.  The latest statistics from San Antonio Dec 13 for early stage Her2+ cancer treated with Herceptin show 5 year rates in the 90s.  OK, I get it that I *could* be in the 5-10% who don't have that result.  But seriously!  I could also die in a car accident and I don't go reminding my children of that!

    So, in our house, I let my daughter talk about "when the cancer is gone" and I don't correct her.  With my older daughter, who is an "old" 9 at least socially/emotionally, I was able to explain a lot more.  I got her the book "The Year My Mom was Bald" and she absolutely devoured it - read virtually the whole thing in one night.  She is very interested in science and liked the diagrams and explanations in the book.  I've asked her a couple of times if she wants to speak to the school counselor - but she has declined so far.  She did immediately tell her closest girlfriends.  I thought that was a really good sign- not bottling it up.

    My younger daughter has also talked about my BC in school.  There was a whole discussion in the K class about it - since a mom of one of the boys in her class also had BC.  I can't imagine - a K classroom  where BC is the topic of the day but I think this has "normalized" it a bit for my 6 yr old. 

  • ycats70
    ycats70 Member Posts: 22
    edited February 2014

    BetterDay, p53 is a tumor suppressor gene.  It "prevents propagation of genetically altered cells," which basically means once we have cancer cells that want to start to multiply or proliferate, the P53 gene is supposed to jump in and stop that proliferation.  They measure it for mutation - the higher it comes back positive, the more mutated it is and therefore the less it is able to do it's job.  So we want it to be negative.  Ki67 is the rate of proliferation, so if Ki67 is high and P53 is high then that means it is fast growing and the gene that is supposed to stop it growing isn't working.  Hope that makes sense!

    Ladies, I am so in agreement with you about your current discussion.  My husband and I started doing triathlons a few years ago and do several per year, and I just ran a 1/2 marathon in March before being diagnosed in June.  I was healthier at diagnosis that I'd been in YEARS.  MO told me to be thankful because it will help me get through treatment easier, and I agree that it did, but still, really?  My 13-year-old daughter has Asperger's and this has been so difficult for her; like being "different" in middle school wasn't already enough for her.  It just makes me want to cry some days.  I think keeping an open dialogue and trying to stay as positive as we can without at the same time making them feel like we are being dismissive is the best route.  They are smart little stinkers and can tell when we are trying to pull the wool over their eyes!  I tried to find a support group in our area for children with Moms who have cancer, but so far haven't had success.  I think about how lonely I feel at times, and then I think how she must feel….   

    YoungTurk I totally get what you are saying about feeling guilty, cuz I've been having those days lately too.  We just have to keep reminding ourselves that we did not choose this, and that we can set such a great example to our kids of how to overcome something difficult with dignity and grace.  Back in early December my daughter's school choir put on a concert and I asked her how she felt about me coming onto her campus wearing my scarf (hair had just started growing back but was barely there) - I wondered if at that age she would be embarrassed.  She said to me "I think you look pretty, and if anyone says anything I'll just tell them that my mom is kicking cancer's butt!!"  Made me smile.

  • oranje_mama
    oranje_mama Member Posts: 79
    edited February 2014

    ycats70, I so hear you.  I was nowhere near running half marathons at diagnosis - but I am active and in fact had just lost 10 lbs  over the 3 months prior to diagnosis (which was tough!).   I was a competitive swimmer in high school, collegiate rower, Masters swimming . . . and never had a health issue of any kind. No breast cancer whatsoever in my family.  And I come from a family of athletic girls - several of my cousins are triathletes and we could form our own swim team.  All of us tall, strong, "tough girls"!

    My BC diagnosis reminded me of when I was mugged at age 26 when I first moved to NY.  I had lived in DC for college (then the "murder capital of the US") - several of my friends had been mugged over the years during college, but I never was, and I figured - no one would dare mess with me!  I am a tough girl rower!  Well, one month after moving to NY, I was "jumped" from behind by some young thugs (gang members), knocked to the pavement.  I initially hung tight onto my bag which was over my shoulder, shouting loudly for help all the while, until one guy started kicking me in the head.  At that point, finally my brain kicked in and told my hand to let go of the bag and let him have it.  I'm sure it was just a matter of seconds/minute but there was this time delay where I literally couldn't accept this was happening to me.  Just not possible.  Not who I was/am.  It took me years before I could walk down a city street in the dark without my heart pounding with the slightest noise. 

    BC diagnosis somehow feels the same.  There is some disconnect/delay in processing the information that I actually have this disease, yes, me.  And I suspect it will be a while before I get to a place where this shock recedes.

    One thing that has helped me in many ways is that my boss is an 11 year survivor.  She was running marathons when she was diagnosed (at 44).  She is a sports "addict" (seriously, she is 55 and will tell me about her weekend which included a 5 mile run AND playing 18 rounds of golf AND she threw in a tennis game too).  Honestly, to look at her you would NEVER know.  NEVER guess that she had BC (BMX & chemo, lest you think it was some "minor" kind of experience).  So helpful to have her as a survivor example.