What's it like being a breast cancer survivor?

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katz1
katz1 Member Posts: 3
edited April 2019 in Breast Cancer #1

My mom was diagnosed with breast cancer at 48 and has the BRCA 2 gene mutation. She had a double mastectomy and she'll be 2 years cancer free in May. I'll go through testing when I turn 25 but I wanted to ask all of you: what does it mean to be a breast cancer survivor? [Content removed by CSN Support Team]

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  • Apaugh
    Apaugh Member Posts: 850 Member
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    Tough

    It is tough.  Frightening.  exhaustion, heart breaking.  A physical and emotional roller coaster you dont want to be on.  It is a life long journey you never recover from all the way.  The side effects are endless and can get overwhelming.  That is why I am thankful for this site.  We are here, we share, we dont judge , we care.

  • kcasey44
    kcasey44 Member Posts: 9
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    Life altering

    Hi Lauren. Interesting question.  I was diagnosed in June of 2010 at 49 years old with stage III B infiltrating ductal breast cancer. 8cm tumor and two positive lymph nodes. I think that I was more positive than the doctors going in. Had chemo first (4 ACs, 12 Taxols, Herceptin), followed by bilateral mastectomy and reconstruction. Ended up having a full hysterectomy 18 months after since Tamoxifen was causing concerning symptoms in uterus.  I had a complete response to the chemo so I did not need radiation so I was lucky in that respect. That's a little perspective on what I've been through. I've recovered physically (mostly). Hard for me to know if symptoms I have since were from the treatments or from being thrown into menopause so quickly. I can definitely say though that going through all that changed me; physically, mentally, emotionally, and spiritually. I may look like my old self again on the outside (well with clothes on), but at times I feel that I'm playing a role of being myself again because I am different in all those ways mentioned. I am stronger in all those ways as well. I am less tolerant of bulls***, and have better boundaries for self care which is good. I can't be more specific other than life is different because I am different. Reality has shifted in a subtle way and I can't go back to my blissful ignorance. It's like going from childhood to adulthood. I know too much about what can happen in life so I've lost some of my youthful innocence. I don't dwell on negativity for the most part, but every once in awhile in a quiet moment I can feel it standing behind me. My own vulnerability and the knowledge that I am no longer as invincible as I thought. I do enjoy my life and am not depressed. It's like breaking a china vase though. You can glue it back together and it wlil still hold water, but if you look closely you can see a slight crack in it forever.

  • katz1
    katz1 Member Posts: 3
    edited April 2019 #4
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    Apaugh said:

    Tough

    It is tough.  Frightening.  exhaustion, heart breaking.  A physical and emotional roller coaster you dont want to be on.  It is a life long journey you never recover from all the way.  The side effects are endless and can get overwhelming.  That is why I am thankful for this site.  We are here, we share, we dont judge , we care.

    Hi Apaugh,

    Hi Apaugh,

    Thank you for your response. I agree with you, my mom is the toughest and strongest women I know because she’s a survivor. [Content removed by CSN Support Team]

  • katz1
    katz1 Member Posts: 3
    edited April 2019 #5
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    kcasey44 said:

    Life altering

    Hi Lauren. Interesting question.  I was diagnosed in June of 2010 at 49 years old with stage III B infiltrating ductal breast cancer. 8cm tumor and two positive lymph nodes. I think that I was more positive than the doctors going in. Had chemo first (4 ACs, 12 Taxols, Herceptin), followed by bilateral mastectomy and reconstruction. Ended up having a full hysterectomy 18 months after since Tamoxifen was causing concerning symptoms in uterus.  I had a complete response to the chemo so I did not need radiation so I was lucky in that respect. That's a little perspective on what I've been through. I've recovered physically (mostly). Hard for me to know if symptoms I have since were from the treatments or from being thrown into menopause so quickly. I can definitely say though that going through all that changed me; physically, mentally, emotionally, and spiritually. I may look like my old self again on the outside (well with clothes on), but at times I feel that I'm playing a role of being myself again because I am different in all those ways mentioned. I am stronger in all those ways as well. I am less tolerant of bulls***, and have better boundaries for self care which is good. I can't be more specific other than life is different because I am different. Reality has shifted in a subtle way and I can't go back to my blissful ignorance. It's like going from childhood to adulthood. I know too much about what can happen in life so I've lost some of my youthful innocence. I don't dwell on negativity for the most part, but every once in awhile in a quiet moment I can feel it standing behind me. My own vulnerability and the knowledge that I am no longer as invincible as I thought. I do enjoy my life and am not depressed. It's like breaking a china vase though. You can glue it back together and it wlil still hold water, but if you look closely you can see a slight crack in it forever.

    Hi Kcasey44,

    Hi Kcasey44,

    Thank you for your response. I agree with you, my mom has definetly grown from her experience being diagnosed and is a changed person because of her breast cancer battle. [Content removed by CSN Support Team]

  • Apaugh
    Apaugh Member Posts: 850 Member
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    katz1 said:

    Hi Apaugh,

    Hi Apaugh,

    Thank you for your response. I agree with you, my mom is the toughest and strongest women I know because she’s a survivor. [Content removed by CSN Support Team]

    its ok

    you can use my words.  my friends call me Annie.

    Hugs and prayers,

    Annie

  • Kelsors2
    Kelsors2 Member Posts: 1
    edited April 2019 #7
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    Difficult

    Hey there. I was diagnosed in 2016, went though surgery and treatment and have been cancer free for 2 years. The journey is different for everyone and will be for your mom. For me, it's been rough. I'm still in denial and going through the continual side effects. It's been very difficult on me and my loved ones. My best advice is to make sure you're there for her in any way you can be. She'll need someone to be there to listen, not to give advice like people did with me. You won't understand what she's going through, but can do all your can to make her feel like she's the same person.

  • Apaugh
    Apaugh Member Posts: 850 Member
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    Kelsors2 said:

    Difficult

    Hey there. I was diagnosed in 2016, went though surgery and treatment and have been cancer free for 2 years. The journey is different for everyone and will be for your mom. For me, it's been rough. I'm still in denial and going through the continual side effects. It's been very difficult on me and my loved ones. My best advice is to make sure you're there for her in any way you can be. She'll need someone to be there to listen, not to give advice like people did with me. You won't understand what she's going through, but can do all your can to make her feel like she's the same person.

    Kelsors2

    That is a wonderful reply.  I am 2 yrs out too dealing with the collateral damges.   I am also dealing with a new cancer.

    The fight is real and we shall overcome and move up and on roaring.

    Hugs and prayers going up for you for brighter days,

    Annie

  • GinnyO19
    GinnyO19 Member Posts: 3
    edited May 2019 #9
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    All the these comments are

    All the these comments are great! It’s been 35 years since I had my last round of breast cancer, when I was 34. I was blessed and can only encourage you to keep looking beyond those first 5 years. Just remember to give yourselves permission to have down days but then rise again! 

  • 2nu2tnbc
    2nu2tnbc Member Posts: 69 Member
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    GinnyO19 said:

    All the these comments are

    All the these comments are great! It’s been 35 years since I had my last round of breast cancer, when I was 34. I was blessed and can only encourage you to keep looking beyond those first 5 years. Just remember to give yourselves permission to have down days but then rise again! 

    35 YEARS!!!!

    This gives lots of HOPE to those of us who are newly diagnosed and those of us who are counting # of years cancer free !!!!! Thank you for sharing!!!!

  • lilquinnjr
    lilquinnjr Member Posts: 1
    edited May 2019 #11
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    kcasey44 said:

    Life altering

    Hi Lauren. Interesting question.  I was diagnosed in June of 2010 at 49 years old with stage III B infiltrating ductal breast cancer. 8cm tumor and two positive lymph nodes. I think that I was more positive than the doctors going in. Had chemo first (4 ACs, 12 Taxols, Herceptin), followed by bilateral mastectomy and reconstruction. Ended up having a full hysterectomy 18 months after since Tamoxifen was causing concerning symptoms in uterus.  I had a complete response to the chemo so I did not need radiation so I was lucky in that respect. That's a little perspective on what I've been through. I've recovered physically (mostly). Hard for me to know if symptoms I have since were from the treatments or from being thrown into menopause so quickly. I can definitely say though that going through all that changed me; physically, mentally, emotionally, and spiritually. I may look like my old self again on the outside (well with clothes on), but at times I feel that I'm playing a role of being myself again because I am different in all those ways mentioned. I am stronger in all those ways as well. I am less tolerant of bulls***, and have better boundaries for self care which is good. I can't be more specific other than life is different because I am different. Reality has shifted in a subtle way and I can't go back to my blissful ignorance. It's like going from childhood to adulthood. I know too much about what can happen in life so I've lost some of my youthful innocence. I don't dwell on negativity for the most part, but every once in awhile in a quiet moment I can feel it standing behind me. My own vulnerability and the knowledge that I am no longer as invincible as I thought. I do enjoy my life and am not depressed. It's like breaking a china vase though. You can glue it back together and it wlil still hold water, but if you look closely you can see a slight crack in it forever.

    Thanks

    kcasey44, you really put into words how I've been feeling.  I'm six months post treatment and, although I went through diagnosis and treatment with a super positive mental attitude always believing I would get through it, I'm now having so many different feelings.  Yes, I look like my old self (but with short hair because mine all fell out) but I'm not the same woman as I was going in.  In the last few weeks I've had some minor depression and seem to be lacking self compassion for all that I went through (which was a lot).  Having said that, I am stronger and live in absolute certainty there is nothing I cannot get through.  However, you nailed it when you said "I don't dwell on negativity for the most part, but every once in awhile in a quiet moment I can feel it standing behind me. My own vulnerability and the knowledge that I am no longer as invincible as I thought."  Also, I too feel like I'm playing a role of being myself again when I don't think I will ever be that self again.  This is my first post as I just found this site yesterday and I think this is going to help me feel less alone.

  • dynawrite
    dynawrite Member Posts: 1
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    dealing with anxiety

    I am finishing my second year of Arimidex.  My fear is not so much about recurrence, but about side effects from the drug and possible side effects from chemo from two years ago.  Am I being realistic?  Every time I feel a twinge or something new comes up I fall apart.  What do you recommend?

  • Apaugh
    Apaugh Member Posts: 850 Member
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    dynawrite said:

    dealing with anxiety

    I am finishing my second year of Arimidex.  My fear is not so much about recurrence, but about side effects from the drug and possible side effects from chemo from two years ago.  Am I being realistic?  Every time I feel a twinge or something new comes up I fall apart.  What do you recommend?

    be kind to yourself..

    It is both physical and psychological.  You can only do what you feel you need to do.  To say dont worry about it would be rediculous. You know who you are and you know your body.  Take it one day at a time.  Go see your doctors and find out.

    Hugs

    Annie

  • AliceB1950
    AliceB1950 Member Posts: 241 Member
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    I was lucky and had Stage 1,

    I was lucky and had Stage 1, with a micromet in the sentinal node, so I had a lumpectomy, a re-excision for clean margins, and 33 rounds of radiation last year.  I don't think any two people have the same mental reaction or experience.  I didn't get particularly upset over the diagnosis, it was just something that had to be dealt with.  At this point, I had cancer, past tense, and I see my oncologist a few times a year, just like I see my PCP or my eye doctor. 

  • kcasey44
    kcasey44 Member Posts: 9
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    Thanks

    kcasey44, you really put into words how I've been feeling.  I'm six months post treatment and, although I went through diagnosis and treatment with a super positive mental attitude always believing I would get through it, I'm now having so many different feelings.  Yes, I look like my old self (but with short hair because mine all fell out) but I'm not the same woman as I was going in.  In the last few weeks I've had some minor depression and seem to be lacking self compassion for all that I went through (which was a lot).  Having said that, I am stronger and live in absolute certainty there is nothing I cannot get through.  However, you nailed it when you said "I don't dwell on negativity for the most part, but every once in awhile in a quiet moment I can feel it standing behind me. My own vulnerability and the knowledge that I am no longer as invincible as I thought."  Also, I too feel like I'm playing a role of being myself again when I don't think I will ever be that self again.  This is my first post as I just found this site yesterday and I think this is going to help me feel less alone.

    Ups and downs

    You will have ups and downs, which means you have to be kind to yourself. There will be many people that won't understand what you've been through and that's why I love these forums. It is a safe place to ask questions, and be your authentic self. One time while going through treatment I ran into a woman I had met at chemo. I asked her, "How are you today?" (standard greeting) and she said "I can tell you that I am NOT fine!". We both laughed and realized that we would always tell people we were fine when they asked how we were, but we were not fine while going through treatment. Sometimes we don't want to scare others with our fears or depression so we tell them we are fine. You can tell all of us here whether you are fine or not fine. You are not alone, so please reach out if you need to. We are here.

    Kerri