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  • melissadallas
    melissadallas Member Posts: 929
    edited November 2015

    Also, A Bi-Rads 3 is estimated as having a less than 3% chance of being cancer.

  • djabi53
    djabi53 Member Posts: 97
    edited November 2015

    Ddw79, momoschki, MelissaDallas - thanks for sharing your perspectives and experiences.

    MelissaDallas - I know what you mean about 12% risk being average, but here is what I've been told. 12% is considered lifetime average risk for a woman w/o family history. And my lifetime risk is 15% which at first glance looks almost normal. When the Genetic Counselor and Oncologist at my High Risk Breast Cancer clinic(MD Anderson) gave me the 15% lifetime risk, they compared it to an 8.6% lifetime risk - not a 12% lifetime risk. They said they use 8.6% lifetime risk with me and not 12% lifetime risk, because I am 62 and have outlived some of that 12% lifetime risk. Because of my age, they take my lifetime risk from 12% to 8.6%. If I understand them correctly, as we age that 12% average lifetime risk goes down, but because age increases our risk, - our 5-10 year risk increases. Does this make sense to anyone? Bottom line seems to be for me that because my mother and aunt had bc postmenopausal and a cousin died of bc premenopausal, my risk is always double - regardless of the lifetime risk number they use. A 15% lifetime risk is almost normal if you use 12% to compare to, but because of my age, they don't use 12% they use 8.6% and so my 15% lifetime risk is double the 8.6% average risk for my age. Thoughts anyone?

    I'm confused because I've read that if you have a first degree relative with bc you are high risk and your risk is double. But most women who have a family history of breast cancer don't get breast cancer. And most women who get breast cancer, don't have a family history. It almost seems like we are all at high risk?

    Marijen - the 6 month monitoring for 2 years protocol is from the breast imaging center I use. I had my first mammogram earlier this year at age 62 - bilateral faint calcifications. Calcs in right breast were starting to form a line, so they did a biopsy. Biopsy came back benign, fibrocystic changes only, no atypical cells. Calcs in left breast look same as those in the right breast but are scattered. I was told by the technician and the radiologist that they monitor ALL calcifications every 6 months for 2 years - that is their protocol for everyone. Because this is my first mammogram , they have nothing to compare and I am in this loop. The breast imaging center I use is a breast center of excellence imaging center.

    momoschki and Ddw79 - I have sometimes asked question online, and gotten other opinions from "Ask an Expert: Johns Hopkins Breast Center." They have been very helpful and you can read the stories and questions of many women on their website in a variety of categories about breast cancer issues. I think some women go to Hopkins for second opinions, work ups and can have their treatment in their home town. Here's the link - http://www.hopkinsbreastcenter.org/services/ask_expert/ On some of the response, they include their phone number - you can call them if you want more information than the online center allows.

  • Ddw79
    Ddw79 Member Posts: 217
    edited November 2015

    And thank you. I like the Johns Hopkins site. Been there many times in the last year

  • Bunnyhuggr
    Bunnyhuggr Member Posts: 7
    edited November 2015

    Looks like I'm joining this club. When the nurse called last week to tell me my biopsy was benign (yay!) & then told me I need to come back in 6 months for another mammogram, I was all, Sure! You betcha! No problem! And what I'm really thinking is, Are you KIDDING me??? You think I'm gonna go through THIS again in 6 months??!! I am NEVER having another mammogram as long as I LIVE!!

    Yeah right 😉. I know too well that if I don't go back in 6 mos. I'll start worrying obsessively.

    But for some reason I thought if the 6 month check was ok I could go back to yearly mammograms. But it sounds like I have to do this for 2 years?? Oh well, there are worse things in life 😊 I'm just glad I don't have cancer

  • marijen
    marijen Member Posts: 2,181
    edited July 2019

    I'm glad you don't have cancer. I can't get over how accepting everyone is to this reality of surgery, meds, scans, x-rays, radiation, chemo and recurrence.


  • Ddw79
    Ddw79 Member Posts: 217
    edited November 2015

    What choice do we have? We could deny the need and reality I guess but then there's death by bc. Do you have other thoughts/ insights / suggestions

  • marijen
    marijen Member Posts: 2,181
    edited July 2019

    No, I just expected more anger. Metastatic breast cancer gets very little funding. But a month ago I didn't know any of these details either. Even my primary blew it off and said they have so many ways to treat breast cancer now, it's not deadly. So I won't be going back to her either. I have found that even my female family members don't get how bad this is, until they get it of course, like me.

  • Ddw79
    Ddw79 Member Posts: 217
    edited November 2015

    I'm notangry.

    I'm really sad and anxious from time to time. Shock was an initial feeling too

  • trish01254
    trish01254 Member Posts: 30
    edited November 2015
    after 6 years of this roller coaster I find it just to be my new normal. I get very anxious as appts get closer then after have a period where I don't think about it at all. Then another appts aproachs and back to the worries
  • Ddw79
    Ddw79 Member Posts: 217
    edited November 2015

    Following up on a question that Anne asked about following up considering that I have type 1 Diabetes on insulin 24/7 , my Endo told me yesterday that I'm good to go on Evista and ok to have MRI too.


    Now I just gotta do it

  • awb
    awb Member Posts: 213
    edited November 2015

    Ddw----good news on both counts! don't worry about the evista, most people don't have any SEs from it, if anything, just hot flashes. The MRI is a great tool for monitoring. I'm glad you got some answers finally


    anne.

  • alicki
    alicki Member Posts: 85
    edited November 2015
    Hello,

    I thought you had been cleared in October. Sorry you're experiencing more problems. I have to go back in Jan for a firm nodule, but it's in the scar area of the reduction, so not really worried.

    So happy MRI approved for you!
    When are you thinking of doing the exam?

    best
    alicki
  • alicki
    alicki Member Posts: 85
    edited November 2015
    Hello,

    <for me, it's been two years, and before every 3 months, now 6 months. Like trish, I just go back to my life between appointments. But I made the mistake of watching a breast cancer programme on TV which my friends were watching, and that trigged some really bad anxiety.

    Best
    alicki
  • Ddw79
    Ddw79 Member Posts: 217
    edited December 2015

    Yes, thanks Anne.

    For some reason Doc is suggesting to start Evisya in January. She will do it but she really doesn't want to. We are both vet afraid of SEs for me. I just ended up in the ER last night with a case of Pancreatitis. I was almost in a cold sweat faint when EMTs picked me up off the floor. This happens pretty often. It's chronic . More meds are just scary but I want to try

  • awb
    awb Member Posts: 213
    edited December 2015

    Ddw----so sorry to hear about the pancreatitis; I know how painful and serious that can be (I have alot of patients in the hospital with that issue); I hope you are doing better now. Even though your risk is elevated by the ADH and your family history, it may pale in comparison with your other medical issues at this time. Perhaps you just need to focus on getting better right now, and put Evista on the back burner. (while you are at higher risk, it still is not cancer, and may never turn into cancer). Definitely things to think about and discuss with your physicians.

    Anne

  • Ddw79
    Ddw79 Member Posts: 217
    edited December 2015

    Yes thanks Anne. My life where the " fun" never begins. I was taken to hospital in Sunday nite this time by ambulance. We think it was another attack of Pancreatitis. I was so sick and am mostly alone with Zero help so I had to call for an ambulance . I could barely get to the door to open it for EMTs and was flat on floor when they came in. Amylase was again very high. Pain thankfully decreased rapidly this go round so feeling lucky .


    I don't know how I'm going to do all of this with breast cancer. I'll probably just die and not treat. I can't treat with all I have already going on. It's ridiculous.

    I appreciate your support

  • trish01254
    trish01254 Member Posts: 30
    edited December 2015

    Wishing everyone a Merry Christmas and happy, healthy New Year.

  • alicki
    alicki Member Posts: 85
    edited December 2015
    Hello,

    Much appreciated. I need to go back in January, lymph nodes are playing up on right side...
    So check-up mammogram, sonogram and maybe MRI (It's a little different here with regard to MRI).

    Trying to relax and not think about it.

    Happy Holiday,
    Alicki
  • djabi53
    djabi53 Member Posts: 97
    edited December 2015

    Just dropping by today to let everyone on this thread know that I am thinking about you and I am so very grateful to all of you for sharing your experiences, feelings, and for creating this important community. Happy Holidays!

    Alicki - I will be thinking about you. Let us know how your appointment goes and how you are doing. I have another 6 month diagnostic mammogram follow up the end of February.


  • alicki
    alicki Member Posts: 85
    edited December 2015

    Hello,

    THere's a big bunch of us on An OCT-MARCH schedule, I just have funny lymph nodes I want checked, otherwise I would have waited.

    Thanks for thinking of me and happy Christmas to you!

    Best

    Alicki

  • tinkerbell49
    tinkerbell49 Member Posts: 176
    edited December 2015

    just dropping in to say Merry Christmas. Thinking of everyone and sending good wishes & thoughts.

    My 6 month check up is coming up in March getting anxious. Enjoying my bundle of joy. 🎄🎁

  • alicki
    alicki Member Posts: 85
    edited December 2015

    hello,

    There s a whole bunch of us on the march - sept/oct schedule. Im going in a little earlier due to lymph nodes issues.

    Merry Christmas to you too!!

  • tinkerbell49
    tinkerbell49 Member Posts: 176
    edited December 2015

    I hope everything turns out good for you alicki. This is mentally exhausting, but we must keep living our life and hoping for the best. I just realized how many food products contain soy lechitin. I love chocolate and of course I still eat it. I've also drank a little wine so I'm really worried. I guess I've been naughty 😝

  • alicki
    alicki Member Posts: 85
    edited December 2015
    Hello,

    Yes, it is mentally exhausting but once the schedule is in place and the knowledge that you have people you can trust and you don't have to fight for tests, it's manageable, (it took me 18 months to get that) I also need yearly check-ups for renal cysts and a gyn problem. I try to schedule them and do them (thanks Ativan) and then forget about everything until the following year. My Breasts are a little more complicated!

    The only thing I'm really grateful for when I read my American sisters posts, is that I don't have to deal with all these insurance approvals. I can basically go to whom I like, where I like in my country and there are no waiting times. Our healthcare is about 10% of our income (we don't get it through our jobs) but it's worth it. The only thing it practically impossible here, is to get genetic testing. Don't ask me why, different countries and different standards. No system is perfect

    Merry Christmas,
    alicki
  • marijen
    marijen Member Posts: 2,181
    edited July 2019

    So Alicia, what country are you in

  • djabi53
    djabi53 Member Posts: 97
    edited December 2015

    Tinkerbell - my 6 month is 2/29. I started getting nervous about a week ago.

  • alicki
    alicki Member Posts: 85
    edited December 2015
    Hello,

    Good luck Tinkerbell, this is not easy, but we need keep going-

    enjoy the hols,
    alicki
  • tinkerbell49
    tinkerbell49 Member Posts: 176
    edited December 2015

    Yes alicki that's all we can do. Thank you we all need luck on our side.

    Has anyone read on soy lechitin which is in bread, chocolate, crackers etc.? I read that soy lechitin does not contain isoflovane, I hope I spelled it right, which is the active ingredient in soy products. So soy lechitin and soy sauce were not bad for bc or high risk bc. Can someone shine some light on this subject. I just realized a lot of stuff I eat contain soy lechitin. I also stay away from red meat. It's really unsure if these foods would harm bc. Sometimes I think just take them off and be done with all this stress and anxiety but then I read the stories of the women who have had to do it and it's scary. I guess that's when I cluck like a chicken lol.

    Dijabi53 I know what you mean I wish I could go get checked already just to get it over with. I go March 23 and I'm already back to thinking all these different scenarios as the first day I found out I had adh.


    • StellaDora
      StellaDora Member Posts: 4
      edited December 2015

      I was a member of the 6 month club. It started in 2012. Did tour of duty twice that year. Then again in Spring of 2013. Then in Fall of 2013. November 2013 finally went for the gene test and became positive. Had another test in Spring 2014. Hysterectomy in Summer of 2014 . Still didn't make the decision to have a double mastectomy...felt like I had time. Spring 2015 got a scare....Fall 2015 get the shocker punch that I have been waiting for my whole life. For me, I felt not if I was going to be diagnosed but when.

      November 2015 I felt like I almost lost my chance to have a successful double mastectomy. Went to MSK 2nd week in December and was confirmed that I could get my surgery on January 8.

      Luckily, the tumor isn't large. Lymph nodes look clean, but I am hoping that I don't get another surprise.

      For me, the 6 Month Waiting Club is not helping the members of my support group, my family and friends...The sweating game sucks ...I guess God gave me the kick in the ass that I needed. I hope that he keeps guiding me in the right direction. I am def scared and feeling a bit loss, knowing that others before me have taken this route gives me the strength that we all need....God Bless....

    • tinkerbell49
      tinkerbell49 Member Posts: 176
      edited December 2015

      Hi StellaDora

      So sorry to hear your story I live with the same fear everyday. I'm thinking of starting tomaxifen in Jan. My first 6 month is coming up in March. Some women are lucky and never have more but some are not we just don't know who's going to be the lucky one. It gets mentally exhausting from time to time.

      If I can ask what your original diagnosis was and what your diagnosis is now?

      Good luck on your mx hope all goes well.

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