I just can't believe this is happening----

Options
AngieD
AngieD Member Posts: 493
edited January 2012 in Breast Cancer #1
I'm new to this group but not to CSN. My husband was diagnosed June 21 with Stage IV Esophageal Cancer. That board has so many people with so much experience and caring to share. No doubt, it's the same here.

2011 was filled with blessings and challenges for us. Apparently, we haven't met our challenges quota yet. Last week we found out: 1) The chemo cocktail that Larry has been doing so well on for 7 rounds has become less effective. So, instead of getting to take a chemo break, he will be moving to a 2nd line regimen. 2) One of our WA grand- unborn- twins' cardiac sonogram looks like she does have Hypoplastic Left Heart Syndrome (HLHS) and will need at least 3 surgeries or a transplant. 3) A routine mammogram resulted in a biopsy that came back showing cancer for me. So, we were not sad to move on out of 2011.

Since I got that word Friday, I'm mostly thinking, "I just can't believe this is happening!" About the only rational thought I've had is, "If I'm going to have chemo and lose my hair, I'd better cancel my appointment for hi-lights and save the money." I haven't even felt scared or mad or done exhaustive research as in the other cases.

Some of the numbness is starting to wear off, so I do have some questions. So far, just the biopsy report is back: invasive ductal carcinoma. The receptor tests should be back this week. The surgeon who did the biopsy said it is so large it will probably need chemo before surgery. I'm scheduled to have a CT and Bone Scan Wednesday and possibly an MRI. Then I see the oncologist (How many folks do you know with a family oncologist?) again on Thursday. With my husband I've found it very helpful to keep copies of all reports and a notebook with questions, etc. What questions and information should I be looking for at this point?

Thanks!
Angie
«1

Comments

  • sea60
    sea60 Member Posts: 2,613
    Options
    Angie, I am so
    sorry on top of everything you've had to deal with, you now have to deal with this! First of all, I'll be praying for all your family. Secondly, we're here for you so know that you have MANY pink sisters to rally you on.

    My tumor was 5cm+ large so I definitly had to have Chemo first before the surgery. I was Estrogen and HER2 positive. Thankfully, it wasn't in the lymph nodes. So I had Chemo, the Mastectomy, radiation, then reconstruction. I was diagnosed 2005 and thank God, despite a few bumps on the road, I'm doing well.

    At this point, I would think you have to wait for the tests to come in before you find out your treatment. Angie, you seem like a strong woman and I know you'll get through all this.

    Sending my prayers and hugs!

    Sylvia
  • laughs_a_lot
    laughs_a_lot Member Posts: 1,368 Member
    Options
    Some people
    Some people just seem to get more in life than they think they can handle. Sounds like that is you. I hope for your sake that it is not to far advanced. It sounds like you have a lot of care to give as it is. I too am a care giver for another family member and an advisor to several other family members whose health is not the best. God has been good to me and allowed me to feel quite good even through chemo. I pray that you will have the same circumstance.
  • camul
    camul Member Posts: 2,537
    Options
    Yeah
    save the money for something fun. Unfortunately, we have a family onco also. He was my moms, mine for bc, and he is seeing my 26 year old son for ET which is in the CLL family. We love him, he is so warm, knows the family, and has been right on with all the second opinions that we have had.

    It will be easier when you get all the info on what they are doing, but this is really a great site with pink sisters and some pink brothers, so we get many opinions and there are so many different kinds of bc, that there is always someone who is or has been on your regimen, or has has side effects, but mostly everyone is so warm and caring, and going through the same things, just plain get what we mean when something is just not right.

    I too have IDC, and did a long dance with ned, 8 1/2 years which I am very thankful for. Once you get more info, you will have more questions.

    Glad you came to the right place, even though I wish you wouldn't have needed to.

    I will say some prayers for you also,

    ~Carol
  • SIROD
    SIROD Member Posts: 2,194 Member
    Options
    Full Plate!
    Dear Angie,

    Your plate is indeed full. I am so sorry about your husband. My cousin's wife had Esophageal Cancer, so I am very aware how serious that disease is. I am sorry about your soon to be grand babies. I hope surgery will work for them.

    If your tumor is large, chemotherapy is more than likely will be before surgery. This seems to be the norm. What options are available to you will depend if you are triple positive (ER/PR+ HER2+) or triple negative. If you have ER/PR + your options will be hormonal therapy and HER2 will make you a candidate for Herceptin. Otherwise triple negatives have chemotherapy.

    I always pick up copies of all reports (test results and doctors notes). This guarantees that we are on the same page.

    When I was diagnose, there was no internet and I found Dr. Susan Love Breast Book to be a good primer for breast cancer. It answered the basic questions. Most libraries should have a copy of her book.

    I wish you the best of luck with your tests, treatments & surgery. I hope the same for your husband and those unborn twins.

    Doris
  • Texasgirl10
    Texasgirl10 Member Posts: 668
    Options
    SIROD said:

    Full Plate!
    Dear Angie,

    Your plate is indeed full. I am so sorry about your husband. My cousin's wife had Esophageal Cancer, so I am very aware how serious that disease is. I am sorry about your soon to be grand babies. I hope surgery will work for them.

    If your tumor is large, chemotherapy is more than likely will be before surgery. This seems to be the norm. What options are available to you will depend if you are triple positive (ER/PR+ HER2+) or triple negative. If you have ER/PR + your options will be hormonal therapy and HER2 will make you a candidate for Herceptin. Otherwise triple negatives have chemotherapy.

    I always pick up copies of all reports (test results and doctors notes). This guarantees that we are on the same page.

    When I was diagnose, there was no internet and I found Dr. Susan Love Breast Book to be a good primer for breast cancer. It answered the basic questions. Most libraries should have a copy of her book.

    I wish you the best of luck with your tests, treatments & surgery. I hope the same for your husband and those unborn twins.

    Doris

    Oh my goodness
    Your plate is overflowing . I am so sorry that on top of everything else that your going through now you have to go through the battle with the beast. My heart goes out to you and I'm sending a huge cyber hug.

    My best friends little boy was born with HLHS & had to have surgery within 4 hours of being born . He just turned 12 & even though he's had a few scary moments & several surgeries he is doing quite well. I will keep you and your family in
    my prayers.

    Please keep us posted and try to take care of yourself.

    Hugs,

    Dawne
  • LoveBabyJesus
    LoveBabyJesus Member Posts: 1,679 Member
    Options
    God bless you and your
    God bless you and your husband.

    Lately, I've been thinking of people who care for their love ones and then get dx. It's hard enough to deal with this once - regardless if its you or someone you love. It's just too much to cope with, but you will take one day at a time, because this is the only way. Can't imagine how you feel having to care for your husband and now this. I'm sorry this happened. Please know you will do well and we will be here to help in any way that we can.

    It is very important you bring someone with you who would listen and write notes for you (or with you). The start of this journey is too overwhelming and you will forget questions, and maybe forget instructions too! It is important you come prepare with all your questions ahead of time, so you and the person who goes with you can ask the Dr. I think it's important to get all the testing done first and let your Dr. make recommendation, then ask questions. Unless other sisters here think otherwise. Its important to understand your report so that you can choose your best option.

    Don't do what I did. STAY AWAY from the computer! I read too much and drove myself insane! I looked through my entire report, and researched every keyword you could possibly imagine. Mistake. The truth is, everyone is unique. Don't fall for stats. Always stay positive. Many do really well. When you're ready to get chemo, we will be here to guide you on what to expect and what to do, etc.

    Get copies of everything. Very important. Don't make a decision on the spot. Try to be calmed, go home, talk about your options with your family, and then come to a decision. Your head will be clearer hours/days after you meet with your Dr. This entire experience is very overwhelming at first, but once a plan is set for you, you will feel more in control.

    Lots of hugs to you. We are here for you.
  • Wendy Joy
    Wendy Joy Member Posts: 51
    Options
    Angie, I just want to say
    Angie, I just want to say that I was diagnosed on Friday too. Invasive ductal carcinoma. Went to the oncologist for the first time today and had genetic counseling. Completely overwhelmed. As of right now stage 1, but also getting a bone scan and MRI this week. It is so overwhelming and scary. But I went on saturday and had 8 inches cut off my hair to prepare for this. It felt good to do something physical and take control. Good luck with everything. I just wanted to let you know that someone else was getting that news too on Friday and know how awful that feels. Good luck with everything in your life and stay strong!
  • Wendy Joy
    Wendy Joy Member Posts: 51
    Options
    Angie, I just want to say
    Angie, I just want to say that I was diagnosed on Friday too. Invasive ductal carcinoma. Went to the oncologist for the first time today and had genetic counseling. Completely overwhelmed. As of right now stage 1, but also getting a bone scan and MRI this week. It is so overwhelming and scary. But I went on saturday and had 8 inches cut off my hair to prepare for this. It felt good to do something physical and take control. Good luck with everything. I just wanted to let you know that someone else was getting that news too on Friday and know how awful that feels. Good luck with everything in your life and stay strong!
  • RE
    RE Member Posts: 4,591 Member
    Options
    :-/
    Hi Angie, I too am sorry to hear that you have had so much on your plate and now this. It is good that you already have an oncologist that you are comfortable with that is very important. I think you already are doing many of things like keeping records and a note pad with questions and answers for and from the doc. I'd say to just make sure you understand what the doctor tells you, asks him to re-explain something if you don't quite get why something is being done the way it. Let us know how things go, you will find those here are super caring and supportive!

    RE
  • mom62
    mom62 Member Posts: 604 Member
    Options
    To much
    Angie,

    I am so sorry you have this burden to bear along with all that is going on with the rest of your family. Just ask what course of treatment your onc plans to go with and in what order so you know what the sequence of events will be. Again, I'm so sorry. They say God never gives us more than we can handle, but sometimes I wonder...It seems very unfair the amount you have going on. Bless you.

    Terry
  • ladyg
    ladyg Member Posts: 1,577
    Options
    Angie
    I am sorry to hear about this news. It seems you already have enough going on in your life. Once you get all your tests done a plan of attack will be laid out. That is what I wanted to know when I was dx'd. I just wanted to know what would or could be done and how soon could we start. I am not the kind of person who likes to wait!
    I will keep you in my thoughts.

    Hugs,
    Georgia
  • BetsyJane
    BetsyJane Member Posts: 127
    Options
    Keeping you and hubby in my prayers
    So sorry to hear all the problems you are having. I will keep you and your husband in my prayers (as well as ALL my pink sisters and brothers).

    God Bless You,

    Betsy
  • missrenee
    missrenee Member Posts: 2,136 Member
    Options
    BetsyJane said:

    Keeping you and hubby in my prayers
    So sorry to hear all the problems you are having. I will keep you and your husband in my prayers (as well as ALL my pink sisters and brothers).

    God Bless You,

    Betsy

    Oh, Angie, I was where you are now 2 years ago
    As I've read through all the posts, I see that all the ladies have given you some great advice--no surprise. This place was my solice, and a place where I could rant, rave, come to when I was scared or just come to talk it all out. I am so sorry that you are here, but you sound like one strong lady. When I was diagnosed I thought--there's no way I can do this, my life is over. How wrong I was. I don't think most of us have a clue as to what we can accomplish or endure.

    You will get there, Angie--and we'll be here to help you. Please post often because we all truly do care.

    Hugs and prayers, Renee
  • AngieD
    AngieD Member Posts: 493
    Options
    sea60 said:

    Angie, I am so
    sorry on top of everything you've had to deal with, you now have to deal with this! First of all, I'll be praying for all your family. Secondly, we're here for you so know that you have MANY pink sisters to rally you on.

    My tumor was 5cm+ large so I definitly had to have Chemo first before the surgery. I was Estrogen and HER2 positive. Thankfully, it wasn't in the lymph nodes. So I had Chemo, the Mastectomy, radiation, then reconstruction. I was diagnosed 2005 and thank God, despite a few bumps on the road, I'm doing well.

    At this point, I would think you have to wait for the tests to come in before you find out your treatment. Angie, you seem like a strong woman and I know you'll get through all this.

    Sending my prayers and hugs!

    Sylvia

    Thank you Sylvia for the
    Thank you Sylvia for the welcome and the prayers. It's wonderful to hear that you are doing well.
  • AngieD
    AngieD Member Posts: 493
    Options

    Some people
    Some people just seem to get more in life than they think they can handle. Sounds like that is you. I hope for your sake that it is not to far advanced. It sounds like you have a lot of care to give as it is. I too am a care giver for another family member and an advisor to several other family members whose health is not the best. God has been good to me and allowed me to feel quite good even through chemo. I pray that you will have the same circumstance.

    Thanks. Very glad to hear
    Thanks. Very glad to hear you've felt quite good through chemo.
    Angia
  • AngieD
    AngieD Member Posts: 493
    Options
    camul said:

    Yeah
    save the money for something fun. Unfortunately, we have a family onco also. He was my moms, mine for bc, and he is seeing my 26 year old son for ET which is in the CLL family. We love him, he is so warm, knows the family, and has been right on with all the second opinions that we have had.

    It will be easier when you get all the info on what they are doing, but this is really a great site with pink sisters and some pink brothers, so we get many opinions and there are so many different kinds of bc, that there is always someone who is or has been on your regimen, or has has side effects, but mostly everyone is so warm and caring, and going through the same things, just plain get what we mean when something is just not right.

    I too have IDC, and did a long dance with ned, 8 1/2 years which I am very thankful for. Once you get more info, you will have more questions.

    Glad you came to the right place, even though I wish you wouldn't have needed to.

    I will say some prayers for you also,

    ~Carol

    Carol, thank you for the
    Carol, thank you for the welcome and the prayers. Yes, we found it easier with my husband once we got through all the appointments and testing and finally had a plan. I think that will be the case this time, also.
  • AngieD
    AngieD Member Posts: 493
    Options
    SIROD said:

    Full Plate!
    Dear Angie,

    Your plate is indeed full. I am so sorry about your husband. My cousin's wife had Esophageal Cancer, so I am very aware how serious that disease is. I am sorry about your soon to be grand babies. I hope surgery will work for them.

    If your tumor is large, chemotherapy is more than likely will be before surgery. This seems to be the norm. What options are available to you will depend if you are triple positive (ER/PR+ HER2+) or triple negative. If you have ER/PR + your options will be hormonal therapy and HER2 will make you a candidate for Herceptin. Otherwise triple negatives have chemotherapy.

    I always pick up copies of all reports (test results and doctors notes). This guarantees that we are on the same page.

    When I was diagnose, there was no internet and I found Dr. Susan Love Breast Book to be a good primer for breast cancer. It answered the basic questions. Most libraries should have a copy of her book.

    I wish you the best of luck with your tests, treatments & surgery. I hope the same for your husband and those unborn twins.

    Doris

    Thank you Doris for the
    Thank you Doris for the welcome and good wishes.
    Angie
  • AngieD
    AngieD Member Posts: 493
    Options

    God bless you and your
    God bless you and your husband.

    Lately, I've been thinking of people who care for their love ones and then get dx. It's hard enough to deal with this once - regardless if its you or someone you love. It's just too much to cope with, but you will take one day at a time, because this is the only way. Can't imagine how you feel having to care for your husband and now this. I'm sorry this happened. Please know you will do well and we will be here to help in any way that we can.

    It is very important you bring someone with you who would listen and write notes for you (or with you). The start of this journey is too overwhelming and you will forget questions, and maybe forget instructions too! It is important you come prepare with all your questions ahead of time, so you and the person who goes with you can ask the Dr. I think it's important to get all the testing done first and let your Dr. make recommendation, then ask questions. Unless other sisters here think otherwise. Its important to understand your report so that you can choose your best option.

    Don't do what I did. STAY AWAY from the computer! I read too much and drove myself insane! I looked through my entire report, and researched every keyword you could possibly imagine. Mistake. The truth is, everyone is unique. Don't fall for stats. Always stay positive. Many do really well. When you're ready to get chemo, we will be here to guide you on what to expect and what to do, etc.

    Get copies of everything. Very important. Don't make a decision on the spot. Try to be calmed, go home, talk about your options with your family, and then come to a decision. Your head will be clearer hours/days after you meet with your Dr. This entire experience is very overwhelming at first, but once a plan is set for you, you will feel more in control.

    Lots of hugs to you. We are here for you.

    Thank you for the welcome
    Thank you for the welcome and the advice. I'm sure I'll have lots of questions as the journey continues. I think, with my husband's case, I've learned the lesson that everyone is a statistic of one.
    Angie
  • AngieD
    AngieD Member Posts: 493
    Options
    Wendy Joy said:

    Angie, I just want to say
    Angie, I just want to say that I was diagnosed on Friday too. Invasive ductal carcinoma. Went to the oncologist for the first time today and had genetic counseling. Completely overwhelmed. As of right now stage 1, but also getting a bone scan and MRI this week. It is so overwhelming and scary. But I went on saturday and had 8 inches cut off my hair to prepare for this. It felt good to do something physical and take control. Good luck with everything. I just wanted to let you know that someone else was getting that news too on Friday and know how awful that feels. Good luck with everything in your life and stay strong!

    Well, good luck to you, too,
    Well, good luck to you, too, my "diagnosis day buddy." Are you having the BRCA testing done? Hope this overwhelming, testing, appointments marathon is going well for you.
    Angie
  • AngieD
    AngieD Member Posts: 493
    Options
    RE said:

    :-/
    Hi Angie, I too am sorry to hear that you have had so much on your plate and now this. It is good that you already have an oncologist that you are comfortable with that is very important. I think you already are doing many of things like keeping records and a note pad with questions and answers for and from the doc. I'd say to just make sure you understand what the doctor tells you, asks him to re-explain something if you don't quite get why something is being done the way it. Let us know how things go, you will find those here are super caring and supportive!

    RE

    Thanks, RE, for the welcome
    Thanks, RE, for the welcome and the advice.
    Angie