Missing this community and an update

LoveBabyJesus
LoveBabyJesus Member Posts: 1,679 Member
in Breast Cancer #1

Hi my beautiful ladies (and gentlemen), I haven't been here in a long time. I have dealt with a lot the last couple of years. I see there are quite a few new people who have joined and I am sorry the numbers keep growing. I hope everyone is doing well -- will be catching up.

I've been doing alright. Survivorship is very hard for me -- more so than treatments (who would have thought?!?!?!?). Have had a few biopsies, including a cervical biopsy, but all OK so far. I have a dear friend who is facing stage 4 bc and we were dx around the same time. It has been hard to deal with that. Lost a family member to breast cancer this year. And another one was really sick with leukemia. Also, I discovered I carry the ATM gene which could have caused my breast cancer at the age of 32. UGH! Did you guys know there are over 25 mutated genes which have been identified? I had to do genone testing to discover mine.

There is a lot of stress in my life, more than I would want to deal with but I am doing OK health-wise, so far. See my Onco this month (do we still do the pink bus?) and my mammo is in Nov. Oh! And I get MRIs done as well because my breasts are dense. Anyone else does?

I hope everyone is doing well here. To all the newbies, you've come to the right place for support.

To deal with my survivorship struggles, I created a blog called thesmallc.com. You are invited to visit and reach out. Boy, survivorship is challenging, isn't it? But I am trying to live my life as best as I can. We are all so different and all is OK.

I've been thinking about this group a lot lately. Hugs to all of you.XOXO

Comments

  • desertgirl947
    desertgirl947 Member Posts: 653 Member
    #2
    Thanks for sharing.
    I know

    Thanks for sharing.

    I know that for me, sometimes I just get tired of it all.  Must be that is how it is as time passes.  In the past, after a few weeks or months, I would be through it all and done with it.  That's not how it is with bc.  Reminders are ALWAYS there.  For me, whenever I hear of someone who has just been diagnosed with a cancer of some sort OR has passed away after a battle with bc, it does catch my attention -- a kind of reality check.   I try not to dwell on "down" thoughts for too many hours or days.   

    Years ago there was not the hope that we now have.  My father (92) reminds me of that without saying it when he says to me, "You're healing is a miracle."  To his generation, cancer was death.  He thought for sure that was going to happen to me when I told him I had bc over three years ago. 

    Hang in there.

  • lintx
    lintx Member Posts: 697
    #3
    desertgirl947 said:

    Thanks for sharing.
    I know

    Thanks for sharing.

    I know that for me, sometimes I just get tired of it all.  Must be that is how it is as time passes.  In the past, after a few weeks or months, I would be through it all and done with it.  That's not how it is with bc.  Reminders are ALWAYS there.  For me, whenever I hear of someone who has just been diagnosed with a cancer of some sort OR has passed away after a battle with bc, it does catch my attention -- a kind of reality check.   I try not to dwell on "down" thoughts for too many hours or days.   

    Years ago there was not the hope that we now have.  My father (92) reminds me of that without saying it when he says to me, "You're healing is a miracle."  To his generation, cancer was death.  He thought for sure that was going to happen to me when I told him I had bc over three years ago. 

    Hang in there.

    Hi Rebecca

    Last time you checked in, I believe your aunt had been diagnosed. I read some of your blog today and thanks for sharing that space with us. I understand how you feel, especially at your young age.  I cannot believe all the bc around me since I first came here for advice.  Maybe it was always there, and I was just oblivious.  I know what you said is true about tests not being 100% correct, but you must have faith.  I know you do!!  I agree with desertgirl in that we are served reality checks.  Please stop in again to say hello and let us know how you're doing.  Hugs, Linda

     

  • New Flower
    New Flower Member Posts: 4,294
    #4
    lintx said:

    Hi Rebecca

    Last time you checked in, I believe your aunt had been diagnosed. I read some of your blog today and thanks for sharing that space with us. I understand how you feel, especially at your young age.  I cannot believe all the bc around me since I first came here for advice.  Maybe it was always there, and I was just oblivious.  I know what you said is true about tests not being 100% correct, but you must have faith.  I know you do!!  I agree with desertgirl in that we are served reality checks.  Please stop in again to say hello and let us know how you're doing.  Hugs, Linda

     

    Hi Rebecva

    Thankyou for Stopping by. We have missed you too. Stay healthy.

    hugs

     

  • disneyfan2008
    disneyfan2008 Member Posts: 6,583 Member
    #5
    (No subject)

    Cool

  • Clementine_P
    Clementine_P Member Posts: 518 Member
    #6
    disneyfan2008 said:

    (No subject)

    Cool

    Disneyfan

    Good to see you.  You have been missed.

    Clementine

  • LoveBabyJesus
    LoveBabyJesus Member Posts: 1,679 Member
    #7
    lintx said:

    Hi Rebecca

    Last time you checked in, I believe your aunt had been diagnosed. I read some of your blog today and thanks for sharing that space with us. I understand how you feel, especially at your young age.  I cannot believe all the bc around me since I first came here for advice.  Maybe it was always there, and I was just oblivious.  I know what you said is true about tests not being 100% correct, but you must have faith.  I know you do!!  I agree with desertgirl in that we are served reality checks.  Please stop in again to say hello and let us know how you're doing.  Hugs, Linda

     

    Oh how sweet of you to

    Smile Oh how sweet of you to remember, Linda! Yes, that's right. My aunt was diagnosed with leukemia at the age of 46. I am happy to report she has been doing well so far! I believe she is still taking a pill and they do check her bone marrow once a year now to make sure she is OK. It was very hard for me when she was sick -- she is like a mother to me!
    How are you doing?

    I think breast cancer is an ugly monster who keeps growing, sadly. More and more young women are been diagnosed and I can't stand it. But like you said, we can't lose hope/faith.

    Thank you for taking the time to read my blog. I created it this year because survivorship is challenging and also because I want to let everything out of my system.

    I'll make sure to come visit more often. I've been thinking a lot about you ladies. XOXO

  • LoveBabyJesus
    LoveBabyJesus Member Posts: 1,679 Member
    #8
    disneyfan2008 said:

    (No subject)

    Cool

    I thought of you recently

    I thought of you recently (DISNEYFAN) when I had my cervical biopsy. I was worried it was my uterus acting up. I am still on Tamoxifen and my doctor now wants me on it for 10 years!! Crazy. I want to stop it badly and have a child but I am scared.

    Hope you are doing well. xoxo

  • LoveBabyJesus
    LoveBabyJesus Member Posts: 1,679 Member
    #9
    Clementine_P said:

    Disneyfan

    Good to see you.  You have been missed.

    Clementine

    Hi Clementine!! How have you

    Hi Clementine!! How have you been feeling? I think of you all often. xo

  • LoveBabyJesus
    LoveBabyJesus Member Posts: 1,679 Member
    #10
    desertgirl947 said:

    Thanks for sharing.
    I know

    Thanks for sharing.

    I know that for me, sometimes I just get tired of it all.  Must be that is how it is as time passes.  In the past, after a few weeks or months, I would be through it all and done with it.  That's not how it is with bc.  Reminders are ALWAYS there.  For me, whenever I hear of someone who has just been diagnosed with a cancer of some sort OR has passed away after a battle with bc, it does catch my attention -- a kind of reality check.   I try not to dwell on "down" thoughts for too many hours or days.   

    Years ago there was not the hope that we now have.  My father (92) reminds me of that without saying it when he says to me, "You're healing is a miracle."  To his generation, cancer was death.  He thought for sure that was going to happen to me when I told him I had bc over three years ago. 

    Hang in there.

    desertgirl947 -- That's

    desertgirl947 -- That's right, there are reminders everywhere. I have quite a few cancer associations, including my most recent mutated gene ATM. Go figure, ATM without the cash! I hate to hear about someone dying from bc and we've lost so many! It isn't fair. The feeling of guilt is real. There is also fear.

    Your dad is right, cancer used to be a death sentence. We still have a long way to go though. Treatments are still tough!

    Glad you are doing well. xo

  • LoveBabyJesus
    LoveBabyJesus Member Posts: 1,679 Member
    #11
    New Flower said:

    Hi Rebecva

    Thankyou for Stopping by. We have missed you too. Stay healthy.

    hugs

     

    Hi! How are you feeling? <3</b>
    New Flower -- Hi! How are you feeling? <3
  • Ace44
    Ace44 Member Posts: 47
    #12
    ATm Gene

    Good morning:

    I also have the ATM gene mututation and have recently been diagnosed with DCIS. I have had a lumpectomy but am getting ready for a bilateral after the discovering the ATM gene. I also had a colonoscopy (due to the slight increase in risk) and had 3 polyps which was another reason that led to the bilateral. Since they can't statistically tell me what the chances of getting a second BC are I am just going to do the aggressive things and remove them since I will have annual colonoscopies most likely going forward (I am only 40). This will also save me from the tamoxifin, the annual MRI's and annual ultrasounds (they said no more mammograms b/c of the risk of the radiation due to the ATM gene).

    Thank you for your post. I hate to hear of another person with this gene especially since it's so unknown but it doesn't make me feel less alone.

     

  • LoveBabyJesus
    LoveBabyJesus Member Posts: 1,679 Member
    #13
    Ace44 said:

    ATm Gene

    Good morning:

    I also have the ATM gene mututation and have recently been diagnosed with DCIS. I have had a lumpectomy but am getting ready for a bilateral after the discovering the ATM gene. I also had a colonoscopy (due to the slight increase in risk) and had 3 polyps which was another reason that led to the bilateral. Since they can't statistically tell me what the chances of getting a second BC are I am just going to do the aggressive things and remove them since I will have annual colonoscopies most likely going forward (I am only 40). This will also save me from the tamoxifin, the annual MRI's and annual ultrasounds (they said no more mammograms b/c of the risk of the radiation due to the ATM gene).

    Thank you for your post. I hate to hear of another person with this gene especially since it's so unknown but it doesn't make me feel less alone.

     

    I am sorry you carry this

    I am sorry you carry this gene too! You're right, there is so little information about this gene. I kept my breasts but they scare me sometimes. Maybe one day I will decide to remove them too, hopefully not due to a cancer. Crazy about the risks with radiation, was told the same. Ugh! I received radiation anyway because my cancer was invasive.And chemo. Now I am on tamoxifen, next year will be my 5th year since my dx. Scary because I've heard too many stories. I do the best I can.

     

    Good luck with everything! xoxo

  • GlowMore
    GlowMore Member Posts: 789 Member
    #14
    LoveBabyJesus said:

    I am sorry you carry this

    I am sorry you carry this gene too! You're right, there is so little information about this gene. I kept my breasts but they scare me sometimes. Maybe one day I will decide to remove them too, hopefully not due to a cancer. Crazy about the risks with radiation, was told the same. Ugh! I received radiation anyway because my cancer was invasive.And chemo. Now I am on tamoxifen, next year will be my 5th year since my dx. Scary because I've heard too many stories. I do the best I can.

     

    Good luck with everything! xoxo

    5 years*

    Prayers for good news as you reach the 5 Year Mark.......Just read your Home Page and Believe me....Miracles do Happen.   I'm 13 years out from diagnosis and 12 years from end of lumpectomy/chemo/radiation.  Just so very sorry that a this had to happen to you at such a young age....it is bad enough when it hits us Older Women...but especally hate it to hit you younger ones.   Sending Prayers for Good Results thru your upcoming tests etc.   Glo

  • cahjah75
    cahjah75 Member Posts: 2,631
    #15
    I too

    have been away from this site way too long.  Sorry to hear you've been under so much stress.  Hoping tomorrow is a better day :-)

    Char

  • denaporter
    denaporter Member Posts: 10
    edited October 2016 #16
    Ace44 said:

    ATm Gene

    Good morning:

    I also have the ATM gene mututation and have recently been diagnosed with DCIS. I have had a lumpectomy but am getting ready for a bilateral after the discovering the ATM gene. I also had a colonoscopy (due to the slight increase in risk) and had 3 polyps which was another reason that led to the bilateral. Since they can't statistically tell me what the chances of getting a second BC are I am just going to do the aggressive things and remove them since I will have annual colonoscopies most likely going forward (I am only 40). This will also save me from the tamoxifin, the annual MRI's and annual ultrasounds (they said no more mammograms b/c of the risk of the radiation due to the ATM gene).

    Thank you for your post. I hate to hear of another person with this gene especially since it's so unknown but it doesn't make me feel less alone.

     

    I also just found out that I

    I also just found out that I have the ATM gene. I am in my third week of radiation and just got a little spooked by what I have seen radiation does with this gene. I go to my oncologist Friday to discuss double masectomy. I DO NOT want to take the tamoxifen and do not understand why they are wanting me to even after I have a full hysterectomy in November and want a masectomy

     

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