This is my first time posting

ksf56
ksf56 Member Posts: 202
in Breast Cancer #1
I'm so glad I found this site! It's taken me a while to get to the point of sharing my journey with anyone - I had a hard time coming to grips with having breast cancer let alone talking with others. I was diagnosed with Triple Negative Invasive Ductal Carcinoma in June of 2011. It followed an abnormal routine mammogram. I had all the other stuff leading to the diagnosis. I was terrified in a big way! We don't live near our family and my husband and I felt so alone. My lumpectomy was followed by another one to get the margins right. I started chemo on Aug. 3rd - I had 4 AC's at 3 week intervals then 12 weeks of Taxol. I had 33 radition treatments and completed them on March 16th of this year. Now I feel on my own to fight this menace. TNBC, as alot of you know, doesn't have anything to fight it with afterwards. I've started going to a support group - not many ladies show up. I've started a "transitions" course which includes exercise, nutrition and whatever. I'm going to do what it takes. I'm so scared of a recurrence!! How do I know if I should bring something to the Dr.? Some time during radiation my clavicle separated from my sternum without an injury. I have a lump on the front of my neck due to it. Yes, I went to my oncologist pretty quick. No one had seen this happen without reason. I'm having neuropathy in my hands but hopefully, meds will help. It's helpful to see that others have felt the same feelings as I have. It means so much. Thanks for being out there!

Comments

  • RE
    RE Member Posts: 4,591 Member
    #2
    Hugs!
    Wish you had no need but since you do I am glad that you found us! For me I sound the alarm anytime anything seems off kilter so to speak. I will go to my regular doctor if something is hurting and does not back off or if I just don't feel up to par. It is my way of making sure I stay on top of things. Right now you are most likely seeing your onco pretty regularly so that will help to keep on top of things. It is a lot to get used to I know but it is what many of us consider our new normal, once cancer touches you most cannot go back to being exactly who they were previously. Just be aware of your body and report any changes that seem concerning to you. Enjoy your life and have fun whenever you find the opportunity, you have worked hard to survive and you most certainly have earned the right to be happy! I wish you all the best!

    RE
  • jessiesmom1
    jessiesmom1 Member Posts: 915 Member
    #3
    Triple Negative Breast Cancer
    I was diagnosed with TNBC in 12/2009; Stage IIa, Grade 3. I had a right mastectomy with a tissue expander inserted in 2/2010. Next came a port and then 16 rounds of chemo - 4 rounds of A/C and 12 rounds of Taxotere. No radiation. I had my implant exchange surgery in 6/2011 and revision-reconstruction surgery in 12/2011. Like you, all our family lives very far away. My husband and I (and 2 kids - now 21 and 19) live in CA. My parents live in FL and my sister lives in GA. My parents came to visit while I was in the hospital for the mastectomy.

    When chemo was over I felt like I was being set adrift in the ocean without a paddle. After the tnbc diagnosis you are so busy with treatment for months and now you are on your own for months at a time. I agree that it is scary but TODAY I have No Evidence of Disease. Yes, I worry that it will recur but I cannot live my life thinking about the what-ifs until they actually happen - IF it actually recurs.

    As to when to contact the oncologist about a symptom (ie. cough,joint pain, fatigue...) or a lump of some sort, my doctor and I have what we call "The 2 week rule." If there is some issue that lasts 2 weeks without getting any better or actually gets worse, then I call and make an office appointment. So far, I have only done that once, for a cough. Turned out to be bronchitis.

    I have never been to a support group. Some people find them very useful but it is just not my style. I prefer to come right here. A group of us who "met" on this Board are even planning to get together for lunch soon. There are women and men with breast cancer on this board who are always willing to share their experiences. Welcome.

    IRENE
  • ksf56
    ksf56 Member Posts: 202
    #4
    RE said:

    Hugs!
    Wish you had no need but since you do I am glad that you found us! For me I sound the alarm anytime anything seems off kilter so to speak. I will go to my regular doctor if something is hurting and does not back off or if I just don't feel up to par. It is my way of making sure I stay on top of things. Right now you are most likely seeing your onco pretty regularly so that will help to keep on top of things. It is a lot to get used to I know but it is what many of us consider our new normal, once cancer touches you most cannot go back to being exactly who they were previously. Just be aware of your body and report any changes that seem concerning to you. Enjoy your life and have fun whenever you find the opportunity, you have worked hard to survive and you most certainly have earned the right to be happy! I wish you all the best!

    RE

    Thank you for the great
    Thank you for the great advise! Yes, I will be seeing docs often for a while now and that is very conforting. I have been having neuropathy in my hands particularly and was put on meds the last visit. I also have insomnia and a sleep study was done. I have restless leg syndrome - the med to treat neuropathy is the one that works on restless legs. There are no coindences - it's amazing! Other than that, I believe I'm appreciating life more than ever. I just need to get more energy to go out and have more fun. We went to Las Vegas (the first time) to celebrate the end of treatment. We met my sister and her husband there. We had a blast! We saw Rod Stewart and Jersey Boys! Fabulous! Best of all, I got to giggle with my sis and forget cancer for long periods of time. I did nap while walking. Thank God there were so many people there and I could stay upright. I was pooped but happy!

    Karen
  • ksf56
    ksf56 Member Posts: 202
    #5
    jessiesmom1 said:

    Triple Negative Breast Cancer
    I was diagnosed with TNBC in 12/2009; Stage IIa, Grade 3. I had a right mastectomy with a tissue expander inserted in 2/2010. Next came a port and then 16 rounds of chemo - 4 rounds of A/C and 12 rounds of Taxotere. No radiation. I had my implant exchange surgery in 6/2011 and revision-reconstruction surgery in 12/2011. Like you, all our family lives very far away. My husband and I (and 2 kids - now 21 and 19) live in CA. My parents live in FL and my sister lives in GA. My parents came to visit while I was in the hospital for the mastectomy.

    When chemo was over I felt like I was being set adrift in the ocean without a paddle. After the tnbc diagnosis you are so busy with treatment for months and now you are on your own for months at a time. I agree that it is scary but TODAY I have No Evidence of Disease. Yes, I worry that it will recur but I cannot live my life thinking about the what-ifs until they actually happen - IF it actually recurs.

    As to when to contact the oncologist about a symptom (ie. cough,joint pain, fatigue...) or a lump of some sort, my doctor and I have what we call "The 2 week rule." If there is some issue that lasts 2 weeks without getting any better or actually gets worse, then I call and make an office appointment. So far, I have only done that once, for a cough. Turned out to be bronchitis.

    I have never been to a support group. Some people find them very useful but it is just not my style. I prefer to come right here. A group of us who "met" on this Board are even planning to get together for lunch soon. There are women and men with breast cancer on this board who are always willing to share their experiences. Welcome.

    IRENE

    I love your picture! I am a huge dog fan!
    Thank you for the recommendation on the 2-week rule. My doc told me to remember how my own body works - if it's new and lasts to pay attention. I don't tend to see a doc normally till something becomes intolerable. I have a big stubborn streak and can put up with a lot. I developed a fever with chills right at the end of chemo and I wasn't going to call for the on-call oncol. My husband overruled me and I was hospitalized with pneumonia for a few days. That really scared me and I'm afraid I'll go overboard with questioning all the weird stuff that's going on.

    It's wonderful to hear from another TNBC. I've felt so alone with this particular diagnosis - everyone I know asks when I can start taking Tamoxifin etc. When I say that's not for me I get a look like -"What?" I wish they had found something to fight this post-treatment but that's not the way it is right now. I'm eating better and exercising. I'm taking supplements too. I'm doing anything I can to prevent this from coming back.

    I appreciate your support!
    Karen
  • New Flower
    New Flower Member Posts: 4,294
    #6
    ksf56 said:

    I love your picture! I am a huge dog fan!
    Thank you for the recommendation on the 2-week rule. My doc told me to remember how my own body works - if it's new and lasts to pay attention. I don't tend to see a doc normally till something becomes intolerable. I have a big stubborn streak and can put up with a lot. I developed a fever with chills right at the end of chemo and I wasn't going to call for the on-call oncol. My husband overruled me and I was hospitalized with pneumonia for a few days. That really scared me and I'm afraid I'll go overboard with questioning all the weird stuff that's going on.

    It's wonderful to hear from another TNBC. I've felt so alone with this particular diagnosis - everyone I know asks when I can start taking Tamoxifin etc. When I say that's not for me I get a look like -"What?" I wish they had found something to fight this post-treatment but that's not the way it is right now. I'm eating better and exercising. I'm taking supplements too. I'm doing anything I can to prevent this from coming back.

    I appreciate your support!
    Karen

    Karen welcome
    I completely understand. My husband and I do not have family living close by. Our parents do need our support and to be taken care of. Every night when I went to sleep during my 5 months of Chemo I prayed for our parents to be heathy enough to be able to take care of themselves.

    I do take drugs after invasive treatment as mine was estrogen positive. It is a challenge due to side effects.

    Welcome to the board it is a group caring people.
    Hugs
  • Megan M
    Megan M Member Posts: 3,000
    #7
    RE said:

    Hugs!
    Wish you had no need but since you do I am glad that you found us! For me I sound the alarm anytime anything seems off kilter so to speak. I will go to my regular doctor if something is hurting and does not back off or if I just don't feel up to par. It is my way of making sure I stay on top of things. Right now you are most likely seeing your onco pretty regularly so that will help to keep on top of things. It is a lot to get used to I know but it is what many of us consider our new normal, once cancer touches you most cannot go back to being exactly who they were previously. Just be aware of your body and report any changes that seem concerning to you. Enjoy your life and have fun whenever you find the opportunity, you have worked hard to survive and you most certainly have earned the right to be happy! I wish you all the best!

    RE

    Welcome to the site!
    Welcome to the site! Someone on here wrote something about a 2 week window. If you are having pain or symptoms, something new, give it 2 weeks and if it is still there, contact your doctor. I know how you feel. Every new pain I feel, my mind goes to cancer.

    You've survived! Take it one day at a time and enjoy each and every day.


    Hugs, Megan
  • laughs_a_lot
    laughs_a_lot Member Posts: 1,368 Member
    #8
    Triple Negative
    I too had TNBC, stage 2. I have plenty of family but they tend not to associate with me except for two brothers. They could not be of much help other than prayer as they have problems of thier own. I did not get neuropathy but since I have carpal tunnel syndrome it some times seems like I do. I discovered that I have lymphedema a couple of weeks ago. It is kinda like diabetes in the sense that you have to manage it the rest of your life. You have to do exercises and try to lose weight if you are overweight. I was already doing this when I discovered lymphedema so I just have to learn self massage techniques.

    I am not so scared of recurrence as I figure (and always did since I got the diagnosis) that I was either going to kick cancer's butt, or go to live with Jesus. So for me either one was going to be ok. I formerly had a very stressful job and lost it about 9 months prior to diagnosis. I figure the excessive stress is what gave me cancer after I had done some research on the issue.

    I don't feel so alone like you do. I just feel like now I can devote my time to projects I used to do prior to cancer. Of course a few of them may need to be modified. I am just always a busy sort of person. I do feel like life is good even though I had cancer.
  • disneyfan2008
    disneyfan2008 Member Posts: 6,583 Member
    #9
    nice you found us...I found
    nice you found us...I found this way late..post surgery, radition etc..

    I do not worry about it coming back...i know it can / will but I enjoy it while all is going well. (like life in general when GOOD I KNOW bumps in road but enjoy the journey as much as I can)

    I hope things are calm for you....

    Denise
  • Double Whammy
    Double Whammy Member Posts: 2,832 Member
    #10
    disneyfan2008 said:

    nice you found us...I found
    nice you found us...I found this way late..post surgery, radition etc..

    I do not worry about it coming back...i know it can / will but I enjoy it while all is going well. (like life in general when GOOD I KNOW bumps in road but enjoy the journey as much as I can)

    I hope things are calm for you....

    Denise

    Time
    That's what it took for me to relax a bit. I'm not triple negative, but I had a high recurrence score on my oncotype test (done for early stage, estrogen receptor positive breast cancer), and sometimes my onc will mention that. It's been 2 years since my diagnoses (pleural, I was dx'd with both breast and endometrial cancers 4 days apart)and I used to think there must be something really messed up with my DNA and what's next? Now, 2 years later with surgeries, chemo and radiation behind me and nothing but good follow-up exams and tests, I seldom go to the dark side. Not never, but seldom. I can honestly say that - and it feels really really good. I don't anticipate my follow up exams with trepidation anymore. I now view them with slightly more (only slightly) anxiety than I used to view those routine well woman exams I used to have before diagnosis.

    Now that doesn't mean I don't worry about every little new thing that comes up, but as long as there aren't any little new things, I'm really ok. I hope some day those little new things will be just like before diagnosis - just a cold or just a pulled muscle - and it won't even enter my mind that it could be cancer related.

    Time - and the support and concerns of the women and men on this board is what helped me. Friends and family - not really. So many thought I should never think about it again. Not so.

    So welcome. Sorry you're here, but I hope we can help.

    Suzanne
  • ksf56
    ksf56 Member Posts: 202
    #11
    Double Whammy said:

    Time
    That's what it took for me to relax a bit. I'm not triple negative, but I had a high recurrence score on my oncotype test (done for early stage, estrogen receptor positive breast cancer), and sometimes my onc will mention that. It's been 2 years since my diagnoses (pleural, I was dx'd with both breast and endometrial cancers 4 days apart)and I used to think there must be something really messed up with my DNA and what's next? Now, 2 years later with surgeries, chemo and radiation behind me and nothing but good follow-up exams and tests, I seldom go to the dark side. Not never, but seldom. I can honestly say that - and it feels really really good. I don't anticipate my follow up exams with trepidation anymore. I now view them with slightly more (only slightly) anxiety than I used to view those routine well woman exams I used to have before diagnosis.

    Now that doesn't mean I don't worry about every little new thing that comes up, but as long as there aren't any little new things, I'm really ok. I hope some day those little new things will be just like before diagnosis - just a cold or just a pulled muscle - and it won't even enter my mind that it could be cancer related.

    Time - and the support and concerns of the women and men on this board is what helped me. Friends and family - not really. So many thought I should never think about it again. Not so.

    So welcome. Sorry you're here, but I hope we can help.

    Suzanne

    Thanks for the support!
    I'm sure time will help allay my worries. I'm already noticing feeling calmer about recurrence. I have my first post-treatment mammogram June 6th. I think that may be a little anxiety ridden but I know I'll do just fine. It's just the idea of it. I'm feeling pretty good right now. I got my first real haircut today and I feel great about it. I'm getting back to a kinda normal state.

    Interestingly, you do find that some family members aren't too supportive and I find myself asking why all the time. It hurts a bit. People really react differently than you think they would and realize who you can count on. It's been a revelation for sure. This has been such a life altering experience - I seem to have more clarity in alot of areas of my life. I also have found that I am a pretty strong person and I can weather the storms that come my way. I just hope that there are just small showers headed my way.

    Bless you all!
    Karen
  • jnl
    jnl Member Posts: 3,869 Member
    #12
    ksf56 said:

    Thanks for the support!
    I'm sure time will help allay my worries. I'm already noticing feeling calmer about recurrence. I have my first post-treatment mammogram June 6th. I think that may be a little anxiety ridden but I know I'll do just fine. It's just the idea of it. I'm feeling pretty good right now. I got my first real haircut today and I feel great about it. I'm getting back to a kinda normal state.

    Interestingly, you do find that some family members aren't too supportive and I find myself asking why all the time. It hurts a bit. People really react differently than you think they would and realize who you can count on. It's been a revelation for sure. This has been such a life altering experience - I seem to have more clarity in alot of areas of my life. I also have found that I am a pretty strong person and I can weather the storms that come my way. I just hope that there are just small showers headed my way.

    Bless you all!
    Karen

    It feels good to "kind of"
    It feels good to "kind of" get back some normality in our lives after fighting bc. Wishing you the best Karen.


    Hugs, Leeza

Discussion Boards