IBC (Inflammatory Breast Cancer)

evolboss
evolboss Member Posts: 9
edited March 2014 in Breast Cancer #1
I am new and was wondering if there are any women on here diagnosed with IBC? I was diagnosed with IBC on Oct. 10th, 2009 after being misdiagnosed several months before with Mastitis. If there is anyone I would love to chat, Evon

Comments

  • carkris
    carkris Member Posts: 4,553 Member
    #2
    Welcome to this site, I dont
    Welcome to this site, I dont have IBC but there are others who do. We are a great group of people with all kinds of BC, issues, I have learned so much here, and gotten support and love. As Chen says Kindred Spirits. lots of laughs. someone should answer soon. Hugs!!
  • evolboss
    evolboss Member Posts: 9
    #3
    carkris said:

    Welcome to this site, I dont
    Welcome to this site, I dont have IBC but there are others who do. We are a great group of people with all kinds of BC, issues, I have learned so much here, and gotten support and love. As Chen says Kindred Spirits. lots of laughs. someone should answer soon. Hugs!!

    Thanks
    I am glad you responded cause even after all of the treatments are over you never forget and need people that feel the same around you.
  • CypressCynthia
    CypressCynthia Member Posts: 4,014 Member
    #4
    evolboss said:

    Thanks
    I am glad you responded cause even after all of the treatments are over you never forget and need people that feel the same around you.

    meena1
    I know Meena1 has IBC and there are many others here. Where are you ladies?
  • Rague
    Rague Member Posts: 3,653 Member
    #5
    I'm IBC
    I'm IBC.

    I saw my PA in the morning of Aug 7, '09 and that afternoon I had a mammogram, sonogram and needle biobsies. The radiologist told me that he'd have the report in the morning and would call me but he was sure it would be positive. On Monday I saw Surgeon, followed by Rad. Dr. a couple of days later (VA goofed and scheduled him before they scheduled chemo Dr), the next day I saw chemo Dr., lots of tests/scans followed and on Aug 25, '09 had my port put in and the next day started 4 doses of A/C 2 weeks apart. 2 weeks after last A/C, Oct 21, '09 had mod. rad. mast. 3 weeks later I started 12 weekly Taxol and the week after the last Taxol i started 25 rads wheich was bad til after they were over and I burned BAD (6 weeks to heal the deepest burn).

    So far everything is going great - I saw Rad and chemo Drs Sept 30 and both are pleased with how I'm doing. Chemo dr wants to see me in 6 months and Rads Dr doesn't want to see me anymore unless one of my other Drs thinks it necessary. I see Surgeon mid Oct. and my PA for annual check up in Oct.

    There are several other IBCer's here but we aren't as numerous as some other types.

    Susan
  • meena1
    meena1 Member Posts: 1,003
    #6
    Rague said:

    I'm IBC
    I'm IBC.

    I saw my PA in the morning of Aug 7, '09 and that afternoon I had a mammogram, sonogram and needle biobsies. The radiologist told me that he'd have the report in the morning and would call me but he was sure it would be positive. On Monday I saw Surgeon, followed by Rad. Dr. a couple of days later (VA goofed and scheduled him before they scheduled chemo Dr), the next day I saw chemo Dr., lots of tests/scans followed and on Aug 25, '09 had my port put in and the next day started 4 doses of A/C 2 weeks apart. 2 weeks after last A/C, Oct 21, '09 had mod. rad. mast. 3 weeks later I started 12 weekly Taxol and the week after the last Taxol i started 25 rads wheich was bad til after they were over and I burned BAD (6 weeks to heal the deepest burn).

    So far everything is going great - I saw Rad and chemo Drs Sept 30 and both are pleased with how I'm doing. Chemo dr wants to see me in 6 months and Rads Dr doesn't want to see me anymore unless one of my other Drs thinks it necessary. I see Surgeon mid Oct. and my PA for annual check up in Oct.

    There are several other IBCer's here but we aren't as numerous as some other types.

    Susan

    I have Inflammatory Breast
    I have Inflammatory Breast cancer, i was diagnosed in July 2008. Right now I am going through a reoccurance and i am stage 4. REMEMEBER, that IBC is the most agressive forms of breast cancer. I was in remission for a couple months as my doctors patted themselves on the back and took their eyes off me, and BAM, the cancer spread. I am back on chemo, and will be for at least a year! So it is important that you follow up with your doctor. I have since transferred to a different hospital (duh), and I am under the treatment of an expert in IBC. I am on a different chemo treatment, and still have a long way to go.
  • heidijez
    heidijez Member Posts: 441
    #7
    inflammatory breast cancer and triple negative here
    just got home from the hospital from my first follow-up appt. after surgery last week. i was diagnosed on december 10, 2009 - am more than happy to chat with you evon!

    happy to say that pathology report was available today - no cancer in the breast whatsoever! unfortunately, 16 of the 20 lymph nodes were not so lucky. not surprising really, since the lymph nodes were what started this whole journey. knew going into the surgery that radiation would follow. have appt. with medical oncologist and radiation oncologist on october 4.
  • Gabe N Abby Mom
    Gabe N Abby Mom Member Posts: 2,413
    #8
    I'd be happy to chat.
    I have IBC and am also triple neg.

    I felt swelling in the armpit on Monday, saw PCP on Tues did mammo and ultrasound same day. Had a biopsy Wed, and confirmation of breast cancer on Thursday Aug 5 2010. Saw the surgeon a week later, he noticed some redness in the skin and did a skin biopsy. Got confirmation of IBC within a couple days of that.

    Three weeks after confirmation of bc, I had the first chemo treatment. I get TAC, 3 weeks apart. I've completed two treatments so far. We know it'll be a mastectomy next and then rads.

    I'm sorry to hear about your misdiagnosis, unfortunately that is fairly common with IBC. Please share the rest of your journey, we'd all enjoy getting to know you. This is a great place to vent, to share, and to get support.

    Linda
  • meena1
    meena1 Member Posts: 1,003
    #9
    heidijez said:

    inflammatory breast cancer and triple negative here
    just got home from the hospital from my first follow-up appt. after surgery last week. i was diagnosed on december 10, 2009 - am more than happy to chat with you evon!

    happy to say that pathology report was available today - no cancer in the breast whatsoever! unfortunately, 16 of the 20 lymph nodes were not so lucky. not surprising really, since the lymph nodes were what started this whole journey. knew going into the surgery that radiation would follow. have appt. with medical oncologist and radiation oncologist on october 4.

    Heidi, I did not realize
    Heidi, I did not realize that you had IBC. Let me know what your oncologist decides to do, this is important. I believe that you may need to go through chemo again since you had so many positive nodes, was this mentioned to you? I had chemo before my surgery, then rads. Since then, i have found out that I should have had chemo, surgery, (actually the surgery was unnecessary), then chemo again. And remember, IBC is very agressive.
  • evolboss
    evolboss Member Posts: 9
    #10
    Gabe N Abby Mom said:

    I'd be happy to chat.
    I have IBC and am also triple neg.

    I felt swelling in the armpit on Monday, saw PCP on Tues did mammo and ultrasound same day. Had a biopsy Wed, and confirmation of breast cancer on Thursday Aug 5 2010. Saw the surgeon a week later, he noticed some redness in the skin and did a skin biopsy. Got confirmation of IBC within a couple days of that.

    Three weeks after confirmation of bc, I had the first chemo treatment. I get TAC, 3 weeks apart. I've completed two treatments so far. We know it'll be a mastectomy next and then rads.

    I'm sorry to hear about your misdiagnosis, unfortunately that is fairly common with IBC. Please share the rest of your journey, we'd all enjoy getting to know you. This is a great place to vent, to share, and to get support.

    Linda

    Thanks to all of you for reply
    After I was diagnosed went through all the tests and biopsies stage 3 left breast. Had 4 treatments Adriamycin then 4 with Taxol with wonderful results you could hardly tell or feel where the lumps were. Had bilateral mastectemy April 15th, 2010 with expanders placed and then 26 treatments of radiation. I am currently being expanded and its not going so well on radiation effected side so only time will tell just soaking in the past year and that I have made it thus far. I guess bitter sweet that I know I am not alone, so glad to hear from all of you. Love to hear if any of you are getting reconstucted and what your docs have said about it. For me it was all about getting rid of the invader (cancer) then we talk reconstuction.
  • Rague
    Rague Member Posts: 3,653 Member
    #11
    meena1 said:

    Heidi, I did not realize
    Heidi, I did not realize that you had IBC. Let me know what your oncologist decides to do, this is important. I believe that you may need to go through chemo again since you had so many positive nodes, was this mentioned to you? I had chemo before my surgery, then rads. Since then, i have found out that I should have had chemo, surgery, (actually the surgery was unnecessary), then chemo again. And remember, IBC is very agressive.

    I was told that because of
    I was told that because of the aggressiveness of IBC that both Adjunct Chemo and Chemo are needed along with surgery and Rads. My surgeon said the same thing but in slightly different words - adjunct chemo to shrink and get margins so he could get it all and have good margins and then chemo again and rads to get anything that he hadn't been able to. Rads so he could be a 'follow up' and make sure that there was nothing left there.

    I have to repeat that IBC is one of the most aggressive BC - unfortunately for those of us it attacks.

    Susan
  • Gabe N Abby Mom
    Gabe N Abby Mom Member Posts: 2,413
    #12
    evolboss said:

    Thanks to all of you for reply
    After I was diagnosed went through all the tests and biopsies stage 3 left breast. Had 4 treatments Adriamycin then 4 with Taxol with wonderful results you could hardly tell or feel where the lumps were. Had bilateral mastectemy April 15th, 2010 with expanders placed and then 26 treatments of radiation. I am currently being expanded and its not going so well on radiation effected side so only time will tell just soaking in the past year and that I have made it thus far. I guess bitter sweet that I know I am not alone, so glad to hear from all of you. Love to hear if any of you are getting reconstucted and what your docs have said about it. For me it was all about getting rid of the invader (cancer) then we talk reconstuction.

    I haven't made the
    I haven't made the reconstruction decision yet, I'm still gathering info before deciding. Sorry I can't help you with that.

    I did ask the question here though...look for the thread "can I get your opinion?" I would bump it up for you if I knew how.

    Linda
  • Rague
    Rague Member Posts: 3,653 Member
    #13
    Rague said:

    I'm IBC
    I'm IBC.

    I saw my PA in the morning of Aug 7, '09 and that afternoon I had a mammogram, sonogram and needle biobsies. The radiologist told me that he'd have the report in the morning and would call me but he was sure it would be positive. On Monday I saw Surgeon, followed by Rad. Dr. a couple of days later (VA goofed and scheduled him before they scheduled chemo Dr), the next day I saw chemo Dr., lots of tests/scans followed and on Aug 25, '09 had my port put in and the next day started 4 doses of A/C 2 weeks apart. 2 weeks after last A/C, Oct 21, '09 had mod. rad. mast. 3 weeks later I started 12 weekly Taxol and the week after the last Taxol i started 25 rads wheich was bad til after they were over and I burned BAD (6 weeks to heal the deepest burn).

    So far everything is going great - I saw Rad and chemo Drs Sept 30 and both are pleased with how I'm doing. Chemo dr wants to see me in 6 months and Rads Dr doesn't want to see me anymore unless one of my other Drs thinks it necessary. I see Surgeon mid Oct. and my PA for annual check up in Oct.

    There are several other IBCer's here but we aren't as numerous as some other types.

    Susan

    Left out 'wasn't' - not 'was'
    I just realized that I said that "rads wheich was bad" - it should be "rads which WASN'T bad". It got BAD AFTER the last rad.

    Sorry - I'm not a great typist as best of times and I often try to type as fast as I think with things not always making sense at all - LOL

    Susan
  • Rague
    Rague Member Posts: 3,653 Member
    #14
    evolboss said:

    Thanks to all of you for reply
    After I was diagnosed went through all the tests and biopsies stage 3 left breast. Had 4 treatments Adriamycin then 4 with Taxol with wonderful results you could hardly tell or feel where the lumps were. Had bilateral mastectemy April 15th, 2010 with expanders placed and then 26 treatments of radiation. I am currently being expanded and its not going so well on radiation effected side so only time will tell just soaking in the past year and that I have made it thus far. I guess bitter sweet that I know I am not alone, so glad to hear from all of you. Love to hear if any of you are getting reconstucted and what your docs have said about it. For me it was all about getting rid of the invader (cancer) then we talk reconstuction.

    I had no reconstruction at
    I had no reconstruction at time of surgery - all my Drs said wait a year to think about it. I'm so glad that I didn't! I had a very large seroma. I burned very bad from radiation so with the amount of scarring from the burns, I'm not sure rather or not recon. will even be possible. I will be seeing my surgeon on Oct 18 for year post surgery appt. so will talk with him them. Part of me says "Go for it" - another part of me says "Why bother? You're doing great.". So I don't know now and have made no decision yet but I'm still 'thinking' about it.
  • Ritzy
    Ritzy Member Posts: 4,381 Member
    #15
    CypressCynthia said:

    meena1
    I know Meena1 has IBC and there are many others here. Where are you ladies?

    I have invasive bc
    Sending all of you big hugs and prayers!


    Sue :)
  • cahjah75
    cahjah75 Member Posts: 2,631
    #16
    evolboss said:

    Thanks to all of you for reply
    After I was diagnosed went through all the tests and biopsies stage 3 left breast. Had 4 treatments Adriamycin then 4 with Taxol with wonderful results you could hardly tell or feel where the lumps were. Had bilateral mastectemy April 15th, 2010 with expanders placed and then 26 treatments of radiation. I am currently being expanded and its not going so well on radiation effected side so only time will tell just soaking in the past year and that I have made it thus far. I guess bitter sweet that I know I am not alone, so glad to hear from all of you. Love to hear if any of you are getting reconstucted and what your docs have said about it. For me it was all about getting rid of the invader (cancer) then we talk reconstuction.

    I had
    Invasive Lobular Carcinoma in my right breast (6.1cm) and LCIS in the left breast. Because I'm the 5th in my family with bc I had a bilateral mastectomy in June 2010. I have decided not to do reconstruction at this time. I had my 3rd TC chemo cocktail last Tuesday and will have 1-3 more. I had no lymph node involvement so don't know yet about rads.
    Char
  • Kristi Sue
    Kristi Sue Member Posts: 1
    #17
    evolboss said:

    Thanks to all of you for reply
    After I was diagnosed went through all the tests and biopsies stage 3 left breast. Had 4 treatments Adriamycin then 4 with Taxol with wonderful results you could hardly tell or feel where the lumps were. Had bilateral mastectemy April 15th, 2010 with expanders placed and then 26 treatments of radiation. I am currently being expanded and its not going so well on radiation effected side so only time will tell just soaking in the past year and that I have made it thus far. I guess bitter sweet that I know I am not alone, so glad to hear from all of you. Love to hear if any of you are getting reconstucted and what your docs have said about it. For me it was all about getting rid of the invader (cancer) then we talk reconstuction.

    Hi! My name is Kristina.
    Hi! My name is Kristina. When I was diagnosed I was not brave enough to reach out. I wish you all the best and hope my story helps you a little. I was diagnosed with Stage 4 IBC in July of 2006. I was 27 years old and has a 2 year old little girl. The first oncologist I saw said the cancer was too progressed and would not treat me, only give me meds to "keep me comfortable". A second opinion, chemo, radical mastectomy, more chemo, and radiation later I am happy to say that 3 years after my final treatment I am still getting clean scans. My doctors did not even give me an option at the time of my surgery of having an expander placed. I was too concerned with living that I didn't think to ask about reconstruction at that time. After treatment, when I started exploring the options they told me that the expander could have caused problems with my treatment. So, when I was finished healing from radiation I started looking. It took 4 plastic surgeons telling me they wouldn't touch me due to the extensive damage caused by the radiation for me to end up at the Mayo Clinic in Phoenix. I was so fortunate to find the BEST plastic surgeon. She reconstructed my breast from my tummy! I have no artificial parts in me. There will be no need to redo in the future, and there was no worry about the damaged skin because it was removed during the surgery. Dont' give up if the expanders do not work there are still options, there are always options. Good luck and keep smiling!
  • carkris
    carkris Member Posts: 4,553 Member
    #18
    Kristi Sue said:

    Hi! My name is Kristina.
    Hi! My name is Kristina. When I was diagnosed I was not brave enough to reach out. I wish you all the best and hope my story helps you a little. I was diagnosed with Stage 4 IBC in July of 2006. I was 27 years old and has a 2 year old little girl. The first oncologist I saw said the cancer was too progressed and would not treat me, only give me meds to "keep me comfortable". A second opinion, chemo, radical mastectomy, more chemo, and radiation later I am happy to say that 3 years after my final treatment I am still getting clean scans. My doctors did not even give me an option at the time of my surgery of having an expander placed. I was too concerned with living that I didn't think to ask about reconstruction at that time. After treatment, when I started exploring the options they told me that the expander could have caused problems with my treatment. So, when I was finished healing from radiation I started looking. It took 4 plastic surgeons telling me they wouldn't touch me due to the extensive damage caused by the radiation for me to end up at the Mayo Clinic in Phoenix. I was so fortunate to find the BEST plastic surgeon. She reconstructed my breast from my tummy! I have no artificial parts in me. There will be no need to redo in the future, and there was no worry about the damaged skin because it was removed during the surgery. Dont' give up if the expanders do not work there are still options, there are always options. Good luck and keep smiling!

    kristi thanks for posting,
    kristi thanks for posting, welcome here. You give everyone here inspiration! this is aparticularly tough time on the board so thank you !!

Discussion Boards