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IBC (Inflammatory Breast Cancer)

evolboss's picture
evolboss
Posts: 9
Joined: Sep 2010

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

carkris's picture
carkris
Posts: 4523
Joined: Aug 2009

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's picture
evolboss
Posts: 9
Joined: Sep 2010

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's picture
CypressCynthia
Posts: 3956
Joined: Oct 2009

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

Ritzy's picture
Ritzy
Posts: 4384
Joined: Aug 2009

Sending all of you big hugs and prayers!

Sue :)

Rague
Posts: 3305
Joined: Aug 2009

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's picture
meena1
Posts: 1005
Joined: Oct 2008

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.

Rague
Posts: 3305
Joined: Aug 2009

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

heidijez's picture
heidijez
Posts: 441
Joined: Mar 2010

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.

meena1's picture
meena1
Posts: 1005
Joined: Oct 2008

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.

Rague
Posts: 3305
Joined: Aug 2009

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's picture
Gabe N Abby Mom
Posts: 2415
Joined: Sep 2010

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

evolboss's picture
evolboss
Posts: 9
Joined: Sep 2010

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.

Gabe N Abby Mom's picture
Gabe N Abby Mom
Posts: 2415
Joined: Sep 2010

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
Posts: 3305
Joined: Aug 2009

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.

cahjah75's picture
cahjah75
Posts: 2623
Joined: Jun 2010

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
Posts: 1
Joined: Oct 2010

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's picture
carkris
Posts: 4523
Joined: Aug 2009

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

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