new here but not to breast cancer

carkris
carkris Member Posts: 4,553 Member
edited March 2014 in Breast Cancer #1
I just was wandering the internet one night and found this board. I am somewhat leery of too many sites as I tend to get anxious. I have already posted on some questions here and learned some interesting things. For EX" will need to discuss my lexapro as I will eventually be on tamoxifen.
I was dx 15 years ago, age 34 stg 1 breast cancer. Then the only did estrogen receptors which were neg. had CMF chemo I had a mastectomy for scattered in situ, interestingly enough 1 year later had a local recurrence, and had radiation.
I have had to have 5 biopsies in the ensuing years. each one producing more and more anxiety and had decided I had enough and was seeing doctors for propholactic mastectomy on the other side. I literall have seen 5 doctors in last eight months and neg mammogram. (also gene neg) I was also in the process of my daughter applying to colleges. Planned on the surgery more in the fall as i was told not an emergency.
Then In may felt a density-went to onc, same place where I had a biopsy 1.5 years earlier, thought it was scar tissue, another mammo, u/s inconclusive, MRI 50/50 scar tissue vs cancer. Lost that one. Invasive lobular. had the mastectomy (no wrenching decision for me) and to everyones surprise am in in stg 2. of course I was dissapointed and still am. More like devasted to be doing this again 2 or three times depending on your perspective. the first one was ductal. Anyways will now be having chemo and radiation and tamoxifen. plus a bone drug whose name escapes me. bone scan and CAT scan negative
Initally I tortured myself with should have done Mastectomy sooner, and I should have had an MRI. Went to 2 centers where they told me MRI is not "standard" IMO it should be. I did not know lobulars are not picked up well mammogram and feel like I should have informed myself better.
I feel knew to this as i have never had this chemo, chemopause, or chemo brain or lost my hair I know how I 'work" so know what I need and have supports in place. I recovered well from surgery except for the seroma(sp) but that is resolved.
I didnt ask the questions of prognosis or numbers that does not help me, I feel statistics did not help me the first time and they were better than my current ones. I dont need a doc to tell me that. However stats are good for determining what treatment you need. Over the years I have seen people from all over the spectrum do well, I feel that if I had to be diagnosed later this way the treatments are better than they were 15 years ago. I try very hard to take things one day at a time, one hour or one minute if thats all I can break it down to. For the most part my surgery is done, second opinions taken care of, will start chemo on thurs after I take my daughter to college.
I remember saying I CANT do this and someone saying you just dont WANT to and that is so true. But if I want the best chance of survival I must so I will, kicking and screaming the whole way.
I am sure I left out some details . ? Here for stg 2 they do not routinely do CT or bone scan my doc is the kind who does even within his practice(a whole other story) but do they do them routinely in other parts of the country/world or do PET scans? I read here more about PET scans. Am I to understand that in Canada they add 5FU to Adriamycin and cytoxin taxol regime?
I am sure I will have more questions as the chemo starts, I cant take compazine, but have prescribed amend, decadron, and ativan. I hope that is enough. anyway now i AM RAMBLING, but wanted to introduce myself instead of some random person who posts here and there. You all sound great!

Comments

  • carkris
    carkris Member Posts: 4,553 Member
    addendum
    what I meant by the first dx stats not helping me is that I still was crazy worried and stressed. kind of a 1/2 empty girl. numbers only serve to stress me out. all I know is that this cancer NEEDS what Ihave to do, no option or decisions to made by me based on stats.
  • tjhay
    tjhay Member Posts: 655
    carkris said:

    addendum
    what I meant by the first dx stats not helping me is that I still was crazy worried and stressed. kind of a 1/2 empty girl. numbers only serve to stress me out. all I know is that this cancer NEEDS what Ihave to do, no option or decisions to made by me based on stats.

    Welcome Home
    Carkris I am so sorry for the reason that you have to be here, however I am very happy that you have found us. First of all I say welcome home because you will find this place to be your second home to you, one filled with sisters and brothers that will walk with you through all of this. We will be here for you if you need a shoulder to cry on, a friend to laught with or an older sibling to explain thing to you. As time goes on you will find that you will do the same for others.
    Second of all there is nothing wrong with getting ancious (misspelled) we all do it. Sometimes on minute at a time is just right.
    So once welcome home
    tjhay
  • aurora2009
    aurora2009 Member Posts: 544 Member
    carkris said:

    addendum
    what I meant by the first dx stats not helping me is that I still was crazy worried and stressed. kind of a 1/2 empty girl. numbers only serve to stress me out. all I know is that this cancer NEEDS what Ihave to do, no option or decisions to made by me based on stats.

    I too wanted to Welcome you
    And thank you for sharing your story, and to copy Tj, Welcome Home.

    This really is the best place you can come for friendships, bonding, support, compassion and the list just goes on and on.

    Take care and post often, also good luck with your first chemo treatment, let us know how you doing with that also.

    God Bless You,
    Aurora
  • Akiss4me
    Akiss4me Member Posts: 2,188
    Hi
    Adding my welcome and hope all goes well for you. Please keep us posted! Pammy
  • taleena
    taleena Member Posts: 1,612 Member
    I too am sorry for the
    I too am sorry for the reason that you are here, but so glad that you found us... you will find a wealth of information and support here... I can't answer any of your questions as I am still in the process of having my treatment determined... but I know there are many members here who can.. please keep us posted when you can on how you are doing..

    Hugs,

    ~T
  • carkris
    carkris Member Posts: 4,553 Member
    taleena said:

    I too am sorry for the
    I too am sorry for the reason that you are here, but so glad that you found us... you will find a wealth of information and support here... I can't answer any of your questions as I am still in the process of having my treatment determined... but I know there are many members here who can.. please keep us posted when you can on how you are doing..

    Hugs,

    ~T

    thanks
    I will definately let you know how this goes. and ask many questions.
  • Booberta
    Booberta Member Posts: 61
    taleena said:

    I too am sorry for the
    I too am sorry for the reason that you are here, but so glad that you found us... you will find a wealth of information and support here... I can't answer any of your questions as I am still in the process of having my treatment determined... but I know there are many members here who can.. please keep us posted when you can on how you are doing..

    Hugs,

    ~T

    Love your spirit
    Carkris, you are obviously an intellegent and well informed person. I'm with you on the statistics. They're nothing but collected data, they have nothing to do with you personally.

    Don't feel bad about not picking up on the tumor sooner. I've always done my self exams in the shower and completely missed the lump until I noticed that my left nipple was inverted. After talking to the breast surgeon I felt better. Mammogram might have picked it up a little sooner but as you said ILC is not easily detected on mammogram.

    I think that especially for breast cancer survivors, a yearly MRI should be the standard of care.

    I just wanted to add my voice to those welcoming you here. You have found a safe place, with warm and loving BC survivors.

    Take your time, gather all the info you need to deal with YOUR breast cancer.

    Love and Peace
    Roberta
  • chickad52
    chickad52 Member Posts: 497
    WELCOME
    Carkris, welcome to the site. I agree with the other ,you sound very well informed. Good Luck with your treatments and I wish you well!! Diane:)
  • survivorbc09
    survivorbc09 Member Posts: 4,374 Member
    so sorry
    Hi! I would like to welcome you. I am so sorry for the recurrence of breast cancer. There are several women on here that have had bc a few timest too. I am sure they will post information and support for you. Good luck to you!
  • Kylez
    Kylez Member Posts: 3,761 Member
    Akiss4me said:

    Hi
    Adding my welcome and hope all goes well for you. Please keep us posted! Pammy

    Welcome
    Welcome to the site! I hope your treatment goes well. I am so sorry though to read of your recurrence's with bc. I will keep you in my prayers! Please keep us updated!

    ♥ Kylez ♥
  • Christmas Girl
    Christmas Girl Member Posts: 3,682 Member
    Official Welcome, carkris
    Thanks for sharing your story. We'll be here for you, each step of the way.
  • Kylez
    Kylez Member Posts: 3,761 Member
    Booberta said:

    Love your spirit
    Carkris, you are obviously an intellegent and well informed person. I'm with you on the statistics. They're nothing but collected data, they have nothing to do with you personally.

    Don't feel bad about not picking up on the tumor sooner. I've always done my self exams in the shower and completely missed the lump until I noticed that my left nipple was inverted. After talking to the breast surgeon I felt better. Mammogram might have picked it up a little sooner but as you said ILC is not easily detected on mammogram.

    I think that especially for breast cancer survivors, a yearly MRI should be the standard of care.

    I just wanted to add my voice to those welcoming you here. You have found a safe place, with warm and loving BC survivors.

    Take your time, gather all the info you need to deal with YOUR breast cancer.

    Love and Peace
    Roberta

    Booberta
    Hi Roberta and welcome to you too!

    Kylez ♥
  • carkris
    carkris Member Posts: 4,553 Member

    Official Welcome, carkris
    Thanks for sharing your story. We'll be here for you, each step of the way.

    thanks
    I feel like I am in between having dealt with this before. Yet am still afraid but also mad. I dont have that "cancer" shock because I've had it before so i am not surprised that mybody could have been invaded by this but am very dissapointed to be dealing with it again. I am mad at myself for not knowning lobulars were not picked up well on mammo-but spoke at length with the second opinion about this and he let me off the hook. Now I tell everyone esp cancer survivors get the MRI.
    I have never had this type of chemo, or lost my hair, that is next. I have a wig in process, and someone to give me my buzz cut, just not sure when. Will have to see how this all goes. I am also dealing with my first child gone to college. I did cry leaving her, saying to my husband "look what i have to go home to!!" but that lasted briefly, if i dont want others to pity me, cant pity myself.
    Anyway thank-you for your kind words, i too am sorry to have met you all here. There is alot of caring and strength here.
  • Alexis F
    Alexis F Member Posts: 3,598
    carkris said:

    thanks
    I feel like I am in between having dealt with this before. Yet am still afraid but also mad. I dont have that "cancer" shock because I've had it before so i am not surprised that mybody could have been invaded by this but am very dissapointed to be dealing with it again. I am mad at myself for not knowning lobulars were not picked up well on mammo-but spoke at length with the second opinion about this and he let me off the hook. Now I tell everyone esp cancer survivors get the MRI.
    I have never had this type of chemo, or lost my hair, that is next. I have a wig in process, and someone to give me my buzz cut, just not sure when. Will have to see how this all goes. I am also dealing with my first child gone to college. I did cry leaving her, saying to my husband "look what i have to go home to!!" but that lasted briefly, if i dont want others to pity me, cant pity myself.
    Anyway thank-you for your kind words, i too am sorry to have met you all here. There is alot of caring and strength here.

    A recurrence
    You have every right to be mad. A recurrence is what puts fear in all of us, because we know it is a real possibility, especially when we are diagnosed young. I wish everyone could get an MRI always too. But, some insurance's won't pay for them and they are several thousand dollars. So, be sure and check with your insurance before having one done again. I am sorry that you feel the loss of your child going to college. But, be proud of them and think how wonderful it will be for them to get more education. I wish you all the luck possible. Keep us updated on you!

    Lex♥
  • survivorbc09
    survivorbc09 Member Posts: 4,374 Member
    carkris said:

    thanks
    I feel like I am in between having dealt with this before. Yet am still afraid but also mad. I dont have that "cancer" shock because I've had it before so i am not surprised that mybody could have been invaded by this but am very dissapointed to be dealing with it again. I am mad at myself for not knowning lobulars were not picked up well on mammo-but spoke at length with the second opinion about this and he let me off the hook. Now I tell everyone esp cancer survivors get the MRI.
    I have never had this type of chemo, or lost my hair, that is next. I have a wig in process, and someone to give me my buzz cut, just not sure when. Will have to see how this all goes. I am also dealing with my first child gone to college. I did cry leaving her, saying to my husband "look what i have to go home to!!" but that lasted briefly, if i dont want others to pity me, cant pity myself.
    Anyway thank-you for your kind words, i too am sorry to have met you all here. There is alot of caring and strength here.

    Carkris, I just want to say
    Carkris, I just want to say how sorry I am that this has happened to you again. I wish you the best of luck. Please post again.

    Hugs!
  • fauxma
    fauxma Member Posts: 3,577 Member

    Carkris, I just want to say
    Carkris, I just want to say how sorry I am that this has happened to you again. I wish you the best of luck. Please post again.

    Hugs!

    Carkris
    Bummer that you are

    Carkris
    Bummer that you are having to deal with this again but you seem to have a positive attitude and you know that will take you a long way. We are all here for you. My prayers are with you during this journey.
    Stef