in shock

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taiga
taiga Member Posts: 75 Member
I am "jumping ship" from the ovarian board. I was dx. in July 2010 with stage 3a, grade 3, clear cell ovarian cancer. I got in a clinical trial and had 6 rounds of chemo (taxol and cisplatin, IV nd IP. I finished the chemo in December 2010 and continued on the Avastin as maintenance every 3 weeks. My last Avastin was supposed to have been the day before Thanksgiving. I tested negative for the BRAC mutation and have no family history of any kind of cancer.

I discovered a lump last week - fast forward - had a needle core biopsy done and found out today I have breast cancer. Pathology report dx: "invasive mammory carcinoma with lobular feature".

I have an appt. with a surgeon tomorrow morning and don't even know where to begin with questions. I am a very straight forward person - I want to know the facts up front. Any info. you can give me about what to ask, the newest tests/surgeries/treatments would be appreciated. I am just devastated.....
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  • MAJW
    MAJW Member Posts: 2,510 Member
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    This sucks....
    And I am so very sorry you have yet another serious problem....I am dealing with a recurrence of bc...stage IV...I would imagine scans will be in order...lumpectomy or mastectomy if needed...with nodes tested for spreading....when I had my lumpectomy in May of 2009 my bc surgeon told me that the survival rate is no different with a mastectomy vs. Lumpectomy...of course there are always exceptions to everything..my bc did NOT come back in my breast but my lymph nodes even though they were "clean" at the time of surgery...you should ask what stage, grade, etc. More info will be obtained once the tumor is removed.......you have the type from the biopsy....now you need to know if it is estrogen driven. I would imagine you've had both ovaries removed...so you need to know that...the body producesestrogen from more than the ovaries... ..mine was stage II when found....I had 4 chemo infusions, of Cytoxan/Taxotere followed by 33 radiation treatments...I have triple negative bc...

    Please take someone with you.....I know that others will chime in with questions to ask...I am sorry you had to jump ship to"us" but please know this is one fantastic group of women! At one time or another one of us have saved someone's sanity!

    Please keep us posted..we truly care
    Hugs, Nancy
  • robang13
    robang13 Member Posts: 333
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    WoW! That really stinks! But
    WoW! That really stinks! But I guess you know the drill: surgery, maybe chemo, maybe rads, maybe tamoxifen. I wish you the best of luck for a speedy and easy treatment plan. I had a different kind so I am no help in the dx. I'm sure you will be getting lots of info from our other sisters here. They are a great group of woman and men! Hugs and prayers coming your way!

    Angela
  • camul
    camul Member Posts: 2,537
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    taiga
    So sorry that you have to do this on top of the ovarian cancer! I am stage iv and like Nancy agree totally that this sucks, big time. I too am straight forward and want all the information yesterday. My breast surgeon told me to bring someone with me to my appointments so I wouldn't miss anything.

    Hopefully someone will come forward who has the same dx that can help you more. This board is very supportive.

    I will include you in prayers that they got this early.
    Carol
  • SIROD
    SIROD Member Posts: 2,194 Member
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    Lobular Carcinoma
    Dear Taiga,

    My best friend had ovarian cancer. She once told me that the lady she sat with in the chemo treatment room also had ovarian and breast cancer. I can't think of anything more dreadful than finding you have two kinds of cancer. My dad had two different kinds and then a recurrence of one of them. He was never stage IV. I have known other women who also were dealt a double blow with two different kinds of cancer. Not fair!

    Lobular is a sneaky cancer. Most women have ductal and about 10% have lobular. Some of the same drugs are used for both ovarian and breast. Your will need a different protocol. Hopefully the breast will be hormonal positive and Her2 which will give you more options.

    I was diagnose with both lobular and ductal, 17 years ago. I have had many recurrence and now it's in my lungs and lining, I am still here to tell the tale.

    Wishing you all the best talking with the surgeon tomorrow.

    Doris
  • New Flower
    New Flower Member Posts: 4,294
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    SIROD said:

    Lobular Carcinoma
    Dear Taiga,

    My best friend had ovarian cancer. She once told me that the lady she sat with in the chemo treatment room also had ovarian and breast cancer. I can't think of anything more dreadful than finding you have two kinds of cancer. My dad had two different kinds and then a recurrence of one of them. He was never stage IV. I have known other women who also were dealt a double blow with two different kinds of cancer. Not fair!

    Lobular is a sneaky cancer. Most women have ductal and about 10% have lobular. Some of the same drugs are used for both ovarian and breast. Your will need a different protocol. Hopefully the breast will be hormonal positive and Her2 which will give you more options.

    I was diagnose with both lobular and ductal, 17 years ago. I have had many recurrence and now it's in my lungs and lining, I am still here to tell the tale.

    Wishing you all the best talking with the surgeon tomorrow.

    Doris

    Being among 10% should not scary you
    Sorry, that you have to deal with cancer again, You have been on the top of your health situation and have checked your lump very quickly and it will help treatment for sure. I agree with Nancy, take someone who can take good notes with you. We have several people on this board who have had two different primary cancer simultaneously, I am sure they will respond to your post soon

    I was diagnosed with Lobular cancer (features) 3&1/2 years ago. Have had mastectomy, 6 cycles of Chemo and 40 radiations, currently in remission and taking Tamoxifen.
    Wishing you the best.
    Please keep us posted
    New Flower
  • dbhadra
    dbhadra Member Posts: 344 Member
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    Being among 10% should not scary you
    Sorry, that you have to deal with cancer again, You have been on the top of your health situation and have checked your lump very quickly and it will help treatment for sure. I agree with Nancy, take someone who can take good notes with you. We have several people on this board who have had two different primary cancer simultaneously, I am sure they will respond to your post soon

    I was diagnosed with Lobular cancer (features) 3&1/2 years ago. Have had mastectomy, 6 cycles of Chemo and 40 radiations, currently in remission and taking Tamoxifen.
    Wishing you the best.
    Please keep us posted
    New Flower

    sorry that you are going through this
    but glad that you have found this board.

    I;m also lobular, IBC.

    Laura
  • beachmom
    beachmom Member Posts: 50
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    SIROD said:

    Lobular Carcinoma
    Dear Taiga,

    My best friend had ovarian cancer. She once told me that the lady she sat with in the chemo treatment room also had ovarian and breast cancer. I can't think of anything more dreadful than finding you have two kinds of cancer. My dad had two different kinds and then a recurrence of one of them. He was never stage IV. I have known other women who also were dealt a double blow with two different kinds of cancer. Not fair!

    Lobular is a sneaky cancer. Most women have ductal and about 10% have lobular. Some of the same drugs are used for both ovarian and breast. Your will need a different protocol. Hopefully the breast will be hormonal positive and Her2 which will give you more options.

    I was diagnose with both lobular and ductal, 17 years ago. I have had many recurrence and now it's in my lungs and lining, I am still here to tell the tale.

    Wishing you all the best talking with the surgeon tomorrow.

    Doris

    two types of breast cancer
    Hi Doris,

    I was encouraged to see your post as I have had a double mastectomy with reconstruction for invasive lobular on one side and invasive ductal on the other. Not too common that I can see.

    My surgery was Oct. 25 and I am currently waiting for the Oncotype DX test to be done. I've requested that it be done on both tumors since they are different cancers.....we'll see what the insurance company says about that.

    I'm new to the boards so I hope my message reaches you! Glad to find someone who has had 2 different types of breast cancer......

    Peace and prayers to you,
    Keely
  • mariam_11_09
    mariam_11_09 Member Posts: 691
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    I am so sorry that you are
    I am so sorry that you are going through this. It is awful after what you have just been through and understandable that feel shocked and devasted. I hope your appointment went well and you will keep us updated with how you are doing. take care and much love to you.
  • SIROD
    SIROD Member Posts: 2,194 Member
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    beachmom said:

    two types of breast cancer
    Hi Doris,

    I was encouraged to see your post as I have had a double mastectomy with reconstruction for invasive lobular on one side and invasive ductal on the other. Not too common that I can see.

    My surgery was Oct. 25 and I am currently waiting for the Oncotype DX test to be done. I've requested that it be done on both tumors since they are different cancers.....we'll see what the insurance company says about that.

    I'm new to the boards so I hope my message reaches you! Glad to find someone who has had 2 different types of breast cancer......

    Peace and prayers to you,
    Keely

    Two Kinds in One Breast
    Hi Keely,

    I had ductal and lobular carcinoma in one breast and only had one mastectomy. Mine only meant it was in the duct as well as the lobe. They could tell that it was lobular as they were signet ring cells. From what I understand signet ring cells are often found in lobular carcinoma in the breast.

    You had a double whammy. I don't see why the insurance company won't pay for the test. It was after all two different kinds and in different area.

    I do wish you the best, Keely as you go on to treatment.

    Doris
  • Double Whammy
    Double Whammy Member Posts: 2,832 Member
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    I am so sorry that you are
    I am so sorry that you are going through this. It is awful after what you have just been through and understandable that feel shocked and devasted. I hope your appointment went well and you will keep us updated with how you are doing. take care and much love to you.

    How did the appointment with the surgeon go?
    Once again, you must feel like you're being sent down an assembly line you just got off, from biopsy to surgery to treatment to follow-up. I hope you don't have too many bumps and everything goes without a glitch. Once you know what your treatment plan/schedule is going to be, I'm sure there will be many of us who've traveled the same road.

    Sorry I missed the post but the one question I'd ask is what you've expressed to us: what's the connection? I asked that and was told that it wasn't unusual for a woman to have both breast and endometrial (I know you had ovarian cancer) over the course of her lifetime. Really?

    Best of luck to you as you begin this new scarey world. Ask any questions you need to - there's usually someone online all the time.

    Suzanne
  • Kat11
    Kat11 Member Posts: 1,931 Member
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    How did the appointment with the surgeon go?
    Once again, you must feel like you're being sent down an assembly line you just got off, from biopsy to surgery to treatment to follow-up. I hope you don't have too many bumps and everything goes without a glitch. Once you know what your treatment plan/schedule is going to be, I'm sure there will be many of us who've traveled the same road.

    Sorry I missed the post but the one question I'd ask is what you've expressed to us: what's the connection? I asked that and was told that it wasn't unusual for a woman to have both breast and endometrial (I know you had ovarian cancer) over the course of her lifetime. Really?

    Best of luck to you as you begin this new scarey world. Ask any questions you need to - there's usually someone online all the time.

    Suzanne

    So sorry
    Welcome to the BC boards sorry you have to be here. Let us know how your doing.
    Kathy
  • DebbyM
    DebbyM Member Posts: 3,289 Member
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    robang13 said:

    WoW! That really stinks! But
    WoW! That really stinks! But I guess you know the drill: surgery, maybe chemo, maybe rads, maybe tamoxifen. I wish you the best of luck for a speedy and easy treatment plan. I had a different kind so I am no help in the dx. I'm sure you will be getting lots of info from our other sisters here. They are a great group of woman and men! Hugs and prayers coming your way!

    Angela

    I am so sorry. Your
    I am so sorry. Your treatment inre to rads and/or chemo will be determined by your pathology report after your surgery.

    I had a lumpectomy and then had rads, no chemo.

    Wishing you the best of luck and please keep us updated.


    Hugs, Debby
  • Ritzy
    Ritzy Member Posts: 4,381 Member
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    Being among 10% should not scary you
    Sorry, that you have to deal with cancer again, You have been on the top of your health situation and have checked your lump very quickly and it will help treatment for sure. I agree with Nancy, take someone who can take good notes with you. We have several people on this board who have had two different primary cancer simultaneously, I am sure they will respond to your post soon

    I was diagnosed with Lobular cancer (features) 3&1/2 years ago. Have had mastectomy, 6 cycles of Chemo and 40 radiations, currently in remission and taking Tamoxifen.
    Wishing you the best.
    Please keep us posted
    New Flower

    So sorry :(
    It's always good to have at least one person with you as you won't hear everything that your doctor says. And, you could even take a tape recorder if you think that might be useful.

    My hubby and I had written down a lot of questions for my doctors, so, I did go somewhat prepared. But, it is so emotional, and, my hubby sometimes had to take over asking the questions. I even had other family members go and friends at times. Seems they couldn't take my saying no to them. lol

    I am so sorry that you have cancer again..very sorry. Just know that we are your pink sisters and will help you thru this.


    Sue :)
  • sinee
    sinee Member Posts: 196 Member
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    welcome taiga
    I know you never wanted to be here, but you will find warm loving women here, that will give you lots of support, encouragment and a safe place to land~hope the visit with the surgeon went well, and I hope you also have an oncologist handy...ask lots of questions and write down more when you think of them...you just got thrown in the river, and we are all tossing in life preservers, so ask us anything~and often...love and hugs to you...I have my first year behind me now....been through the chemo, then the surgery and the radiation~ as have a LOt of lovely women on here...hope you got some answers from the surgeon and your onco. Sinee
  • laughs_a_lot
    laughs_a_lot Member Posts: 1,368 Member
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    Sorry
    Sorry you had to jump ship, but you landed where you need to be. Being a straight forward woman will be an asset as it tends to leave no stone unturned.
  • taiga
    taiga Member Posts: 75 Member
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    Sorry
    Sorry you had to jump ship, but you landed where you need to be. Being a straight forward woman will be an asset as it tends to leave no stone unturned.

    My appt. with the breast surgeon
    He's 99% sure it is lobular and hormone driven. I have an MRI today on both breasts to determine exactly how large the tumor in the right breast is and to make sure nothing is going on in the left breast. Since I have been on Avastin alone since Jan. (part of the clinical trial I WAS in for ovarian - I got kicked out this week LOL)he doesn't want to do any surgery for at least 6-8 weeks. In the meantime, if it is hormone driven, I'll be on a hormone blocker (can't remember the name)in hopes it shrinks the tumor. He said lobular doesn't respond to chemo well which explains why it's there depsite my chemo last year for ovarian and the year's worth of Avastin. He also said lobular tends to have "fingers" that branch out, so right now, based on the size, type and location, lumpectomy doesn't look like a good option, but we'll see in a couple months. That gives me time to get 2nd opinions - any suggestions? I'm in Springfield, MO. Was thinking Baylor (where the surgeon did his fellowship), Barnes/Wash U in St. Louis, MD Anderson, Cleveland Clinic, Memorial Sloan. I really liked the surgeon and my awesome gyn/onc got me right in to him.

    Next question: have always been told I have really dense breasts - lots of women are told that. The surgeon told me mine are off-the-charts dense. He had never seen breasts that dense in a woman my age (51). So why did I even bother with mammograms in October 2010 and last month - given my history of ovarian cancer and how dense they are - why didn't they give me an ultrasound or MRI? The gist of his answer boiled down to money/what the insurance co. would approve. F^%$# the insurance company - if I had been given the option, or the info as to just how dense they were - I would have paid for it myself.

    Sorry this is so long - but he also said lobular was one of the few (only?) breast cancers that spread to the abdominal cavity (not what I wanted to hear) and the bones. I have had terrible neck and shoulder pain since the beginning of the year when I started the Avastin as maintenance. 2 mos. ago I started having tailbone pain like a pinched sciatic nerve. So, my follow-up CT for ovarian scheduled for Dec. has been moved up to this Wed. and I will have a PET/CT to check me from head to toe.

    I appreciate all the information and well wishes. You guys are great. I'll be spending my time flipping back and forth between the boards. I'm new at the breast cancer stuff but I'll educate myself just like I did with the OC. Will keep you posted and thanks again. Hope all of you are doing well.
  • disneyfan2008
    disneyfan2008 Member Posts: 6,583 Member
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    Taiga: so sorry...you must
    Taiga: so sorry...you must go through all this...not a question for Dr but suggestion..use a journal...i carried mine with me...if i had any thoughts, questions I would write it and later have it..to ask Doctor!

    I brought 2 others with me to appt since I would be listening so carefully & then the Dr would say something and my mind just went to mush..so extra EARS were a great plus for me.

    Denise
  • DianeBC
    DianeBC Member Posts: 3,881 Member
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    taiga said:

    My appt. with the breast surgeon
    He's 99% sure it is lobular and hormone driven. I have an MRI today on both breasts to determine exactly how large the tumor in the right breast is and to make sure nothing is going on in the left breast. Since I have been on Avastin alone since Jan. (part of the clinical trial I WAS in for ovarian - I got kicked out this week LOL)he doesn't want to do any surgery for at least 6-8 weeks. In the meantime, if it is hormone driven, I'll be on a hormone blocker (can't remember the name)in hopes it shrinks the tumor. He said lobular doesn't respond to chemo well which explains why it's there depsite my chemo last year for ovarian and the year's worth of Avastin. He also said lobular tends to have "fingers" that branch out, so right now, based on the size, type and location, lumpectomy doesn't look like a good option, but we'll see in a couple months. That gives me time to get 2nd opinions - any suggestions? I'm in Springfield, MO. Was thinking Baylor (where the surgeon did his fellowship), Barnes/Wash U in St. Louis, MD Anderson, Cleveland Clinic, Memorial Sloan. I really liked the surgeon and my awesome gyn/onc got me right in to him.

    Next question: have always been told I have really dense breasts - lots of women are told that. The surgeon told me mine are off-the-charts dense. He had never seen breasts that dense in a woman my age (51). So why did I even bother with mammograms in October 2010 and last month - given my history of ovarian cancer and how dense they are - why didn't they give me an ultrasound or MRI? The gist of his answer boiled down to money/what the insurance co. would approve. F^%$# the insurance company - if I had been given the option, or the info as to just how dense they were - I would have paid for it myself.

    Sorry this is so long - but he also said lobular was one of the few (only?) breast cancers that spread to the abdominal cavity (not what I wanted to hear) and the bones. I have had terrible neck and shoulder pain since the beginning of the year when I started the Avastin as maintenance. 2 mos. ago I started having tailbone pain like a pinched sciatic nerve. So, my follow-up CT for ovarian scheduled for Dec. has been moved up to this Wed. and I will have a PET/CT to check me from head to toe.

    I appreciate all the information and well wishes. You guys are great. I'll be spending my time flipping back and forth between the boards. I'm new at the breast cancer stuff but I'll educate myself just like I did with the OC. Will keep you posted and thanks again. Hope all of you are doing well.

    I am very sorry that you had
    I am very sorry that you had a reason to come to this board. I do want to welcome you even though I wish you weren't here.

    I have dense breasts, so, I have a mammo and ultrasound every 6 months and a MRI once a year.

    I have always thought that 2nd opinions are great. It either confirms what your first doctor says, or, gives you new options.


    I will be praying for you and keep posting,


    Diane
  • VickiSam
    VickiSam Member Posts: 9,079 Member
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    Taiga: so sorry...you must
    Taiga: so sorry...you must go through all this...not a question for Dr but suggestion..use a journal...i carried mine with me...if i had any thoughts, questions I would write it and later have it..to ask Doctor!

    I brought 2 others with me to appt since I would be listening so carefully & then the Dr would say something and my mind just went to mush..so extra EARS were a great plus for me.

    Denise

    Taiga .. so sorry you had to find us ..
    I am sure you are running into walls, perhaps in a state of confusion, betrayal and even experiencing anger.

    You will get thru THIS -- believe me...

    Take some time and research all your options -- if possible take some to accompany to your appointments, along with a tape recorder -- so many topics and subjects along with med's are spoken about -- so it is important to go back via a recorder and see exactly what was said during these appointments -- this also helps with questions for your surgeon or doctor going forward.

    Best of luck to you, prayers as well.

    Strength, Courage and Hope.

    Vicki Sam
  • Double Whammy
    Double Whammy Member Posts: 2,832 Member
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    VickiSam said:

    Taiga .. so sorry you had to find us ..
    I am sure you are running into walls, perhaps in a state of confusion, betrayal and even experiencing anger.

    You will get thru THIS -- believe me...

    Take some time and research all your options -- if possible take some to accompany to your appointments, along with a tape recorder -- so many topics and subjects along with med's are spoken about -- so it is important to go back via a recorder and see exactly what was said during these appointments -- this also helps with questions for your surgeon or doctor going forward.

    Best of luck to you, prayers as well.

    Strength, Courage and Hope.

    Vicki Sam

    My hate list
    Right under cancer is insurance companies. So far I haven't been effected by non coverage, but I always wonder when that will happen. I want my care decisions to be based on what I need, not what insurance will cover! And I want the option of paying for something myself if insurance won't.

    I didn't know that lobular cancer doesn't respond well to chemo. Add that bit of information to my hate list.

    Having had 2 primary cancers, if I were to develop distant metastasis, I would want to know if it was breast or endometrial cancer. I assume the docs would, too. I hope your scans are clear and this isn't an issue. I was told if I ever do have a metastasis that it would be biopsied to determine treatment because they respond differently to different treatments.

    Re. second opinion. I'd just be sure to go to a major cancer treatment facility and/or teaching hospital where you know they're linked for clinical trials and where you'll be seeing someone whose sub, subspecialty is breast cancer, not a general oncologist. There are good and bad health care providers in any setting. And you want your gyn onc and breast cancer teams to communicate. I don't know if mine physically communicate any more, but because of the electronic medical record, I often get comments from one about the other - and I make sure the right hand knows what the left is doing. Or at least I think I do.

    I hope your scans are fine and the pain you've been having is in fact from the Avastin. It's entirely possible. I am so sorry about your diagnosis and hope your treatments begin soon and are successful.

    Suzanne