Inflammatory Breast Cancer

Aliaslisa
Aliaslisa Member Posts: 16 Member
edited March 2014 in Breast Cancer #1
I've beeen diagnosed with Inflammatory Breast Cancer which I understand is quite rare. My Oncologist says Chemo twice a month for a year. He also said that if I missed a treatment, my body would go into shock and I'd die. Has anyone ever heard of Chemo for a year? And dying of shock if you miss a treatment? I'm getting ready to move from San Diego back up to Los Angeles to be with family. I hope I get an oncologist that is not so grim. I start Chemo Monday. Friday I'm having the "port" put in. I'm also a triple negative. This doctor made it seem as though if I made it to 9 months, I'd be lucky. Input would be appreciated. Thank you.

Comments

  • zahalene
    zahalene Member Posts: 670
    Holy Cow, Lisa!
    I have never heard of such a thing as dieing if you miss a treatment and I have been a breast cancer survivor for 23 years. Many of us (maybe even most) have to delay treatments a few times during our plan because of low blood counts. It is more dangerous to get a treatment at those times than to skip one.
    Also, as you will soon realize if you spend much time on these boards, inflammatory breast cancer is not all that rare. It is mentioned here fairly often.
    Chemo twice a week seems a bit unusual, but many of us have courses of treatment lasting a year or more.
    I definitely think a second opinion is in order.
    God bless.
  • Reikigemgirl
    Reikigemgirl Member Posts: 278
    Hope you get a better.....
    doctor in Los Angeles. Because you definately need a second opinion, as already mentioned. That will be good to be close to your family too.

    When I was first diagnosed they thought it was Inflammatory Breast Cancer but since then the diagnosis has been changed to just a very agressive cancer. There are a couple of people on this board who have it and hopefully they will be along soon to answer your post.

    The port will make your chemo treatments easier to get so it's a good thing they tell me. I go for my first chemo treatment today so it will be the first time I use mine. I go every three weeks for 4 times, have a masectomy and then go for 4 more treatments of chemo, along with some radiation possibly. I also take Armidex.

    You will meet great people here and find comfort along with valuable information. Welcome.

    Love and Light,
    Vicki
  • Alexis F
    Alexis F Member Posts: 3,598
    Hi Aliaslisa
    Geesh. I think you seriously need to get a second opinion here. There are several on here that were diagnosed with inflammatory bc. I hope they post on here for you, so, I am not so sure that it is rare or not. As far as chemo, everyone has a different treatment, so, I don't think there is a set amount of time for it. Just want to welcome you and to say how we are here for support. Let us know how you are doing. Good luck to you Lisa!

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

    Holy Cow, Lisa!
    I have never heard of such a thing as dieing if you miss a treatment and I have been a breast cancer survivor for 23 years. Many of us (maybe even most) have to delay treatments a few times during our plan because of low blood counts. It is more dangerous to get a treatment at those times than to skip one.
    Also, as you will soon realize if you spend much time on these boards, inflammatory breast cancer is not all that rare. It is mentioned here fairly often.
    Chemo twice a week seems a bit unusual, but many of us have courses of treatment lasting a year or more.
    I definitely think a second opinion is in order.
    God bless.

    Hi Lisa! I agree with the
    Hi Lisa! I agree with the others. You should get a 2nd opinion. Keep us updated!

    Hugs!
  • MAJW
    MAJW Member Posts: 2,510 Member
    Get a new DOC!
    This oncologist sounds like a real peach! From the information I have, inflammatory breast cancer is on the rare side, accounting for less than 1% or less of all bc......my sister in law had Carcinosarcoma which is even more rare, 20 years ago at age 39....had a mastectomy and that was it....no chemo or radiation.......she is now retired and living the good life in Florida.......Twice a month chemo for year isn't unusual, as always, every case is different. BUT I HAVE NEVER heard of anyone going into shock and dying for having to postpone a chemo infusion......Did he have the impression that you wouldn't take the chemo, perhaps? Either way, as I said, he sounds like a real peach who needs to be left in San Diego!
    Best wishes and prayers to you
    Nancy
  • Rague
    Rague Member Posts: 3,653 Member
    I was diagnosed with ICB on
    I was diagnosed with ICB on Aug 7th and saw the surgeon on the 10th. He told me it is rather rare and aggressive and he wanted Chemo started right away before surgery. He ordered a a bone scan and appt. with med. oncologist but the appt got mixed up in the VA office and it was made for the Rad. oncologist so I saw him and then it got straightened out and the next AM saw the chemo Dr. (Love him). He ordered a PET scan and EKG. Tuesday had port put in and started chemo yesterday afternoon. Putting the port in went good - I went straight from the OR to the holding area for about 1/2 hr and then home. They gave me some heavy duty pain pills but all I would have needed was tylenol but Hubby made me take the heavy duty that night but I haven't taken anymore of them - nor tylenol.
    Chemo went great for me yesterday - I still haven't gotten the least bit nausus.

    I don't know but from some I've read here - the triple negative may be what he's more worried about. There are others here with first hand knowledge on triple negative.

    Good luck on your move and prayers.

    Susan
  • ladybug22
    ladybug22 Member Posts: 646
    ali
    just letting u know we are out here.i b c is very aggressive and rare. i had a port put in all my tests run and started my chemo with in one week of my diag. i had 4 rounds of chemo every 2 weeks then i had to take herceptin once a week for 10 weeks then had my breast removed jan 1 08 then 33 rounds of rads. after that i had to have herceptin every 3 weeks for a year. if u want a 2th app. please go on right now and get one becaue if it being aggrssive.I dont no about the shock if u miss chemo. i was dix in aug of 07 and just had my port taken out aug this year. i am clean now. hang in there this is a long road just take it one day at a time. please e mail me if u want to talk and i will send u my phone number e mail is [email protected] hugs and love to you hang in there
  • chickad52
    chickad52 Member Posts: 497
    WOW
    Lisa, I definatly agree with the others. Time to find a new Doctor!! Hugs, Diane
  • Kylez
    Kylez Member Posts: 3,761 Member
    chickad52 said:

    WOW
    Lisa, I definatly agree with the others. Time to find a new Doctor!! Hugs, Diane

    New doc
    I concur also, get a new doctor. That is awful what he said to you.


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

    New doc
    I concur also, get a new doctor. That is awful what he said to you.


    Kylez ♥

    oncs
    ditch the onc! I have a friend who lives out in LA and has an onc there and loves the practice ,When she emails me back I will give you the info! sorry for the diagnosis. I am new to this board but people here are great!!!!
  • carkris
    carkris Member Posts: 4,553 Member
    carkris said:

    oncs
    ditch the onc! I have a friend who lives out in LA and has an onc there and loves the practice ,When she emails me back I will give you the info! sorry for the diagnosis. I am new to this board but people here are great!!!!

    docs
    her doc is Dr.Barry Rosenbloom Tower hematology and Oncology. Beverly hills, associated with
    cedars is happy with them all there. # 310-888-8680. best wishes. Its worth talking to them to see if you like them. This is her take I live on the other coast!!! Best wishes!
  • meena1
    meena1 Member Posts: 1,003
    INFLAMMATORY BREAST CANCER SURVIVOR!!!!!!!
    I was diagnosed with Inflammatory Breast Cancer last July. It is very rare, however, there have been 3 other woman in chemo with the same diagnosis. I had chemo every week, Taxol, for 12 weeks. I then had a masectomy. I was Her 2 positive, so I had Herceptin. Since you are triple negative, this will not work for you...My oncologist did not say I would die if I missed a treatment, however, he would not let me miss a treatment. He told me that I had to have the same level of medication in my body, I could not even change the day! Inflammatory Breast Cancer is very aggressive. Your onc may have a terrible bedside manner, but he needs to be very aggressive in treating this disease. My prognosis was grim at first, but I am still here after 13 months! Without treatment,this type of cancer spreads very rapidly. So, i am a survivor, and you will be to. I feel really well now, oh yeah, I also had 25 radiation treatments after my masectomy. I am still a little tired, but quite fine. Please let me know how you are. Take care.
  • jnl
    jnl Member Posts: 3,869 Member
    meena1 said:

    INFLAMMATORY BREAST CANCER SURVIVOR!!!!!!!
    I was diagnosed with Inflammatory Breast Cancer last July. It is very rare, however, there have been 3 other woman in chemo with the same diagnosis. I had chemo every week, Taxol, for 12 weeks. I then had a masectomy. I was Her 2 positive, so I had Herceptin. Since you are triple negative, this will not work for you...My oncologist did not say I would die if I missed a treatment, however, he would not let me miss a treatment. He told me that I had to have the same level of medication in my body, I could not even change the day! Inflammatory Breast Cancer is very aggressive. Your onc may have a terrible bedside manner, but he needs to be very aggressive in treating this disease. My prognosis was grim at first, but I am still here after 13 months! Without treatment,this type of cancer spreads very rapidly. So, i am a survivor, and you will be to. I feel really well now, oh yeah, I also had 25 radiation treatments after my masectomy. I am still a little tired, but quite fine. Please let me know how you are. Take care.

    Lisa, please post and let us
    Lisa, please post and let us know how you are doing. I hope you get a 2nd opinion. Meena1 has given you a lot of info. Hope to hear from you.

    Leeza
  • ladybug22
    ladybug22 Member Posts: 646
    i b c
    i had i b c i am clean right now so hang in there
  • susie09
    susie09 Member Posts: 2,930
    ladybug22 said:

    i b c
    i had i b c i am clean right now so hang in there

    See Lisa, there are several
    See Lisa, there are several bc survivors here that had ibc and are doing fine. Post and let us know if you are getting a new doctor.

    ♠♣ Susie ♠♣