Inflammatory Breast Cancer Anyone?

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  • Sherry_Ranuio
    Sherry_Ranuio Member Posts: 28
    #22
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    Reikigemgirl said:

    Not that after all......
    I have two cancers in my left breast but neither one of them is inflammatory breast cancer because my skin biopsy came back clear. As to what it is, the best way I can describe it is to say google it because it is hard to explain. And to diagnose. My cancer is invasive carcinoma with ductal and lobular features and the other one is: lobular carcinoma in situ involving the margin. That is what the pathology report says. I will understand more about it all when I see the oncologist on Monday.

    Love and Light,
    Vicki

    Congratulations!
    Congratulations! I'm so happy to hear that you do not have IBC! It is a rare and very aggresive form of breast cancer. I'm new also, I just joined yesterday. I was diagnosed with IBC a little over a year ago and still surviving! I was diagnosed stage 4 because by the time they figured out what it was it had already metastasized into all my lymph nodes and skeleton. Because of this I did not need any surgery or radiation. My onc said the best way to beat this would be chemo. So, that's what I've been doing this whole time. I went through the first round, then a maintenance schedule, and now have to go another round because my numbers are starting to creep back up. My onc is very optimistic and believes he can keep me alive a very long time. I have a lot to live for and keeping a positive attitude is the best medicine! I didn't care much for wigs. Mostly wore a hat. However, I was very lucky and did not lose my hair completely! It just got very thin, so I was able to get away with not shaving my head.

    I wish you the best of luck!
    Sherry
  • Sherry_Ranuio
    Sherry_Ranuio Member Posts: 28
    #23
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    mgray said:

    Question about your type of cancer
    Can you explain to me what inflammatory breast cancer is? thank you

    IBC
    IBC or Inflamatory Breast Cancer is a rare and aggressive form of breast cancer. I was diagnosed July 15, 2008, however I noticed circular hard spots on my breast two years prior to my diagnosis. I went to my gyno who said it was probably scar tissue from an earlier surgery. By the way, breast cancer does not run in my family I'm the first. Anyways, just to be on the safe side he sent me in for a breast MRI. That came back negative and I didn't think anymore about it. The spots grew, my right breast became hard to the touch and hot, turned red in color, and started to hurt so bad I couldn't sleep at night. My left breast also started getting spots, what looked like a boil underneath of it. I was distraught because none of the doctors I saw were concerned and said "Oh that's normal, it will go away on it's own." It wasn't until my back was giving me so much pain I could barely walk that I really wanted some relief, but by now I didn't have insurance because I had to take a voluntary lay off from my job. I was married on July 4th 2008 and my husband put me on his insurance and got me into see his doctor right away. She took one look at me and said "No, that is not normal." and started ordering a lot of tests. It was a whirlwind of doctor appt. for a week, but finally because of a bone scan they finally were able to diagnos me with cancer, but it wasn't until a biopsy was done that they determined it was IBC. So, I know that's a long story, but I'm still here and plan to be here for a very long time! One thing for sure is that there is not enough information about IBC and not many people know of it. Education in this case is better! The more you know the better your chances are of catching it in earlier stages.

    Best of luck to you!
    Sherry
  • susie09
    susie09 Member Posts: 2,930
    #24
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    Weird, but, I have never
    Weird, but, I have never heard of inflammatory bc. Have a lot of you?
  • DianeBC
    DianeBC Member Posts: 3,881 Member
    #25
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    Sherry_Ranuio said:

    IBC
    IBC or Inflamatory Breast Cancer is a rare and aggressive form of breast cancer. I was diagnosed July 15, 2008, however I noticed circular hard spots on my breast two years prior to my diagnosis. I went to my gyno who said it was probably scar tissue from an earlier surgery. By the way, breast cancer does not run in my family I'm the first. Anyways, just to be on the safe side he sent me in for a breast MRI. That came back negative and I didn't think anymore about it. The spots grew, my right breast became hard to the touch and hot, turned red in color, and started to hurt so bad I couldn't sleep at night. My left breast also started getting spots, what looked like a boil underneath of it. I was distraught because none of the doctors I saw were concerned and said "Oh that's normal, it will go away on it's own." It wasn't until my back was giving me so much pain I could barely walk that I really wanted some relief, but by now I didn't have insurance because I had to take a voluntary lay off from my job. I was married on July 4th 2008 and my husband put me on his insurance and got me into see his doctor right away. She took one look at me and said "No, that is not normal." and started ordering a lot of tests. It was a whirlwind of doctor appt. for a week, but finally because of a bone scan they finally were able to diagnos me with cancer, but it wasn't until a biopsy was done that they determined it was IBC. So, I know that's a long story, but I'm still here and plan to be here for a very long time! One thing for sure is that there is not enough information about IBC and not many people know of it. Education in this case is better! The more you know the better your chances are of catching it in earlier stages.

    Best of luck to you!
    Sherry

    Thank you for explaining
    Thank you for explaining that. I had never heard of it either.

    Want to wish you good luck Sherry!
  • Kylez
    Kylez Member Posts: 3,761 Member
    #26
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    ladybug22 said:

    I B C
    I am sorry to hear your dx.I was dx in 07 with I B C just letting you i am clean for over a year now. Tuesday the surgeon will refer you to onc. my onc had me take a pat scan and i had a port put in for my chemo. my chemo was first then i had breast removed then rads.keep in mine that was in my case your may be difference lots of luck .Take someone with you and tape recorder would help lots of info comming your was fast.the onc will move fast with you are they did with me. please take one day at a time. You shouild go and get your wig so the color will be right and there is a heaventy hats.con will send you a nice hats and scarves. i will try to send you mt phone number in your mail box on here

    Congrats ladybug on being
    Congrats ladybug on being clean for a year!

    That is something to celebrate!

    So happy for you!


    Hugs,


    Kylez
  • Reikigemgirl
    Reikigemgirl Member Posts: 278
    #27
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    Sherry_Ranuio said:

    IBC
    IBC or Inflamatory Breast Cancer is a rare and aggressive form of breast cancer. I was diagnosed July 15, 2008, however I noticed circular hard spots on my breast two years prior to my diagnosis. I went to my gyno who said it was probably scar tissue from an earlier surgery. By the way, breast cancer does not run in my family I'm the first. Anyways, just to be on the safe side he sent me in for a breast MRI. That came back negative and I didn't think anymore about it. The spots grew, my right breast became hard to the touch and hot, turned red in color, and started to hurt so bad I couldn't sleep at night. My left breast also started getting spots, what looked like a boil underneath of it. I was distraught because none of the doctors I saw were concerned and said "Oh that's normal, it will go away on it's own." It wasn't until my back was giving me so much pain I could barely walk that I really wanted some relief, but by now I didn't have insurance because I had to take a voluntary lay off from my job. I was married on July 4th 2008 and my husband put me on his insurance and got me into see his doctor right away. She took one look at me and said "No, that is not normal." and started ordering a lot of tests. It was a whirlwind of doctor appt. for a week, but finally because of a bone scan they finally were able to diagnos me with cancer, but it wasn't until a biopsy was done that they determined it was IBC. So, I know that's a long story, but I'm still here and plan to be here for a very long time! One thing for sure is that there is not enough information about IBC and not many people know of it. Education in this case is better! The more you know the better your chances are of catching it in earlier stages.

    Best of luck to you!
    Sherry

    Now they think it's IBC again....
    Hi Sherry,

    After I met with my surgeon on Thursday he said he thinks it is IBC so he got me into the oncologist yesterday. The oncologist isn't sure, although he seemed to be think so after he saw the mammogram, so he wants to talk to the pathology guy and the surgeon to see if they can figure this out. My symptoms are not as pronounced as yours were and since it is so hard to diagnose they aren't sure. My next step is a pet scan to see if it has spread then they will decide my chemo treatment (after they agree on what kind of cancer it is too).

    I am glad to hear that you are doing so good. There is another woman here on this board who has IBC too and she is very nice also.

    I love your positive attitude Sherry and welcome to the board. I am new on here also and everyone has made me feel welcome.

    Love and Light,
    Vicki
  • cats_toy
    cats_toy Member Posts: 1,462 Member
    #28
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    Vicki
    so sorry you are going through such turmoil, and the flip flop of diagnosis is not helping I bet. This is a very late welcome, glad the post got bumped so I could find it today. I have heard of IBC, and it is getting more press every day. Hope you get more info soon, and let us know how its going.
    BTW: great to see another Vicki that spells the name right! (I am Vicki, but hubby and most of my high school buddies call me Cat)
    Cat
  • Victoria C.
    Victoria C. Member Posts: 2
    #29
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    Sherry_Ranuio said:

    Congratulations!
    Congratulations! I'm so happy to hear that you do not have IBC! It is a rare and very aggresive form of breast cancer. I'm new also, I just joined yesterday. I was diagnosed with IBC a little over a year ago and still surviving! I was diagnosed stage 4 because by the time they figured out what it was it had already metastasized into all my lymph nodes and skeleton. Because of this I did not need any surgery or radiation. My onc said the best way to beat this would be chemo. So, that's what I've been doing this whole time. I went through the first round, then a maintenance schedule, and now have to go another round because my numbers are starting to creep back up. My onc is very optimistic and believes he can keep me alive a very long time. I have a lot to live for and keeping a positive attitude is the best medicine! I didn't care much for wigs. Mostly wore a hat. However, I was very lucky and did not lose my hair completely! It just got very thin, so I was able to get away with not shaving my head.

    I wish you the best of luck!
    Sherry

    Inflammatory Breast Cancer
    Sherry,
    I am so glad to hear that you are a survivor of this horrible disease. My sister was just diagnoised with IBC, she to went through all the stupid comments from doctors who didn't care enough to order more tests. She's just starting her chemo at the research part of MD Anderson Cancer Hospital in Houston, Texas. She's so scared, her cancer has metastaseized. I wish you two could talk. She's having a hard time keeping a positive attitude.
    Victoria C.
  • meena1
    meena1 Member Posts: 1,003
    #30
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    IBC survivor
    Hi! I am new here. I was diagnosed with IBC last July, be careful what you read! I was stage 4, I went through Chemo, a masectomy, and then radiation. I am doing amazing right now, I feel really good. I still receive treatments every 4 weeks for bone mets, My doctors were great and i met wonderful people, please let me know your treatment
  • meena1
    meena1 Member Posts: 1,003
    #31
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    IBC survivor
    Hi! I am new here. I was diagnosed with IBC last July, be careful what you read! I was stage 4, I went through Chemo, a masectomy, and then radiation. I am doing amazing right now, I feel really good. I still receive treatments every 4 weeks for bone mets, My doctors were great and i met wonderful people, please let me know your treatment
  • Moopy23
    Moopy23 Member Posts: 1,751 Member
    #32
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    meena1 said:

    IBC survivor
    Hi! I am new here. I was diagnosed with IBC last July, be careful what you read! I was stage 4, I went through Chemo, a masectomy, and then radiation. I am doing amazing right now, I feel really good. I still receive treatments every 4 weeks for bone mets, My doctors were great and i met wonderful people, please let me know your treatment

    Victoria C and Meena1
    Hello, and welcome to you both, though I regret the reason you are here.

    Meena1, you and Sherry are inspiring and encouraging. I do not have IBC but did have a very aggressive cancer. It comforts me to read about your successful treatments and good life. I will remember you both and your positive attitude next time I feel down. Thank you both for sharing your experiences.

    Victoria C, I hope that your sister will visit this board. We are all survivors of breast cancer, and she will find encouragement and support. No matter the type of cancer, the treatment journey is usually similar, as are the emotions. MD Anderson, Houston, is the top cancer research center in the country, so your sister is in good hands. And, she is surely blessed to have such a caring and supportive sister. I am blessed, too, with a loving and unfailingly supportive sister. You probably don't realize how much you are helping yours.
  • meena1
    meena1 Member Posts: 1,003
    #33
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    Moopy23 said:

    Victoria C and Meena1
    Hello, and welcome to you both, though I regret the reason you are here.

    Meena1, you and Sherry are inspiring and encouraging. I do not have IBC but did have a very aggressive cancer. It comforts me to read about your successful treatments and good life. I will remember you both and your positive attitude next time I feel down. Thank you both for sharing your experiences.

    Victoria C, I hope that your sister will visit this board. We are all survivors of breast cancer, and she will find encouragement and support. No matter the type of cancer, the treatment journey is usually similar, as are the emotions. MD Anderson, Houston, is the top cancer research center in the country, so your sister is in good hands. And, she is surely blessed to have such a caring and supportive sister. I am blessed, too, with a loving and unfailingly supportive sister. You probably don't realize how much you are helping yours.

    Thank You
    I wish I had joined earlier, I know alot about IBC, so I hope I can be of help to someone, I know that I beat it and my journey was scary but amazing. I live in Philadelphia and had great doctors and nurses. How are you doing?
  • Alexis F
    Alexis F Member Posts: 3,598
    #34
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    meena1 said:

    IBC survivor
    Hi! I am new here. I was diagnosed with IBC last July, be careful what you read! I was stage 4, I went through Chemo, a masectomy, and then radiation. I am doing amazing right now, I feel really good. I still receive treatments every 4 weeks for bone mets, My doctors were great and i met wonderful people, please let me know your treatment

    Hi Meena1 and welcome.
    Hi Meena1 and welcome. Sounds like you have it all together! Very happy for you!

    Hugs ♥Lex♥
  • susie09
    susie09 Member Posts: 2,930
    #35
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    meena1 said:

    Thank You
    I wish I had joined earlier, I know alot about IBC, so I hope I can be of help to someone, I know that I beat it and my journey was scary but amazing. I live in Philadelphia and had great doctors and nurses. How are you doing?

    Hello Meena1! I am sure we
    Hello Meena1! I am sure we can all learn from the information that you have. Glad to see you on the site!

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