Current Research on IBC

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LoriCA
LoriCA Member Posts: 923
edited May 2019 in IBC (Inflammatory Breast Cancer)

Since so much of the research and stats available on the internet concerning Inflammatory Breast Cancer is outdated, I thought it might be a good idea to have a place to share more current information and research studies. Although IBC is still the most aggressive and deadly form of breast cancer, there's been some improvement in the survival stats over the past decade thanks to tri-modal treatment and the development of HER2+ targeted drugs.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6152950/

This study was published late 2018 and contains comprehensive epidemiological data from 248 MD Anderson patients diagnosed with IBC between 2006 and 2013, believed to be the largest analysis of epidemiological data to date. Secondary IBC was excluded. Only patients added to MD Anderson's IBC Registry are included in this study so there is some selection bias - patients were either local or could afford to travel to MD Anderson (and sorry TravelText, it does only include women).

Some highlights:

Mean age at diagnosis was 51.6

63% of patients presented with stage III disease, while 36.8% had stage IV disease

Self-discovery through breast exam was reported in 84% of patients. The majority of patients (79%) reported having annual mammograms. Redness was reported by 62.1% of patients, edema/fullness, 48%; skin dimpling/discoloration, 46%; a lump, 26%; and nipple inversion, 16%. Almost half the women in the study delayed seeking medical attention because they did not believe their symptoms were important.

A physician diagnosis of breast cancer was made in 38% of patients, while an initial diagnosis of IBC was made in only 4% and further testing was recommended for 20% of the cases. Patients reported being initially treated with antibiotics in 38% of cases, while 24% reported being misdiagnosed as having breastfeeding-related changes, an allergic reaction, insect bites or cysts.

The pCR rate in stage III IBC patients (n = 138) was 21.7%.

The median overall survival was 97.08 months; the mean overall survival was 77.6 months. The median survival time from 1988 through 2000 was 2.9 years so this is some good progress (though not nearly enough).

Age at diagnosis did not significantly affect survival in the overall cohort. African American or Hispanic ethnicity, not having breastfed, higher clinical stage, and TNBC subtype were associated with shorter survival. Age at diagnosis, number of pregnancies, menopause status, BMI, smoking status, age of menarche, and HRT or oral contraceptive use were not significantly associated with overall survival.

The median overall survival among stage III patients was 113.4 months.

For stage IV patients, the median survival was 56.7 months The overall survival time was shortest for HR-/HER2- subtype (54.6 ± 6.5 months), followed by HR+/HER2+ (59.4 ± 2.6 months), HR+/HER2- (61.1 ± 3.4 months), and HR-/HER2+ (76.1 ± 3.6 months).

A history of breastfeeding was associated with better survival independent of clinical stage, disease subtype, or number of pregnancies


Lots of other good info in there too, including breakdown of risk factors and survival stats by ethnicity and by tumor subtypes

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  • Traveltext
    Traveltext Member Posts: 2,089
    edited April 2019

    Thanks for posting this excellent summary of IBC survival rates based on MDA epidemiological studies LoriCA. And thanks for the shout out. I'd love to say I've ever met, let alone heard of, a man with IBC, but I am in touch with the IBC Research Foundation, based in Texas, and have sent them my details including a photograph pre surgery. Unfortunately I didn't achieve pCR following neoadjuvant treatment. That worried my surgeon, but I know she's going to be happy when I turn up to see her on my five-year NED anniversary.

    IBC survivors are welcome to join in conversations on the IBC Lounge thread here which is running pretty hot as a few members, LoriCA included, are going through extensive and intensive treatments to get this dreadful sub-set BC disease under control.



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  • LoriCA
    LoriCA Member Posts: 923
    edited April 2019

    What surprised me the most was the percentage of de novo Stage IV. I thought it was around 25-30% but this study had closer to 40%!

    5 years NED is fantastic TT. I think we have several here who were Stage III and have been NED long term, which should give people a lot of hope. Hopefully we'll see those survival rates continue to trend upwards with new treatments.

    For those who are reading to learn, as mentioned this study was on Primary IBC only and does not include Secondary IBC. Primary IBC refers to a de novo presentation in which IBC develops in a previously otherwise normal breast. Secondary IBC is a term used to describe a situation where a previously diagnosed noninflammatory invasive breast cancer acquires inflammatory features or when an inflammatory recurrence occurs at the site of a mastectomy for a noninflammatory breast cancer.

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  • Traveltext
    Traveltext Member Posts: 2,089
    edited April 2019

    Always look forward to your posts LoriCA, you are so widely read. Mine was a secondary IBC, since the lump was there for the few months it took me to convince my PCP that I needed a scan. By that time, the breast has bright red, very inflamed, extra large, and the nipple had inverted. The breast surgeon took one look and sent me off to the oncologist to begin neo-adjuvant treatment.


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  • LoriCA
    LoriCA Member Posts: 923
    edited April 2019

    TT it is absolutely horrible that it took months before you were taken seriously about a lump in your breast. Is yours not still considered primary since it was your de novo diagnosis?

    The study said that 26% of the patients had a lump, but it doesn't mention if the lump came first, at the same time, or after the skin symptoms presented. Given that 70% reported having annual mammograms and knowing that when a women feels a lump she'll usually run straight to her doctor, I'm inclined to think that the lump came after for most, but either way, having a lump didn't preclude a Primary IBC diagnosis.

    Am I overthinking things? :p

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  • LoriCA
    LoriCA Member Posts: 923
    edited May 2019

    Interesting study from Memorial Sloan Kettering, one of the premier IBC research centers. Very little research has been done on IBC based on molecular subtypes, and what they found was that hormonal and targeted treatments weren't as effective in IBC as they are in non-IBC breast cancers.

    "...the fact remains that for IBC, targeted therapies such as hormonal therapies and anti-HER2 therapy do not appear as effective as expected in terms of improving clinical outcomes of their targeted populations. The results confirmed that we need novel IBC-specific treatment strategies for all molecular subtypes. A multicenter prospective study is warranted for each subtype of IBC with novel targeted therapies to improve these very poor outcomes."

    Long-term treatment efficacy in primary inflammatory breast cancer by hormonal receptor- and HER2-defined subtypes

    https://academic.oup.com/annonc/article/25/2/384/191712


    Guess that might explain why mine isn't responding to HER2-targeted drugs.

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  • Traveltext
    Traveltext Member Posts: 2,089
    edited May 2019

    Thanks for posting Lori.

    "The overall pCR rate in stage III IBC was 15.2%, with the HR-positive/HER2-negative subtype showing the lowest rate (7.5%) and the HR-negative/HER2-positive subtype, the highest (30.6%)."

    No pCR for me (ER/HR + HER2- following neoadjuvant treatment that included 33 radiation burns.


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  • sbelizabeth
    sbelizabeth Member Posts: 2,889
    edited May 2019

    No pCR for me either. After six rounds of TAC chemo, the mastectomy pathology revealed "extensive tumor emboli" in the lymphatic channels of the breast. It was certainly crapalactic news. I did have a tiny lump (1.2 cm) with a big umbrella of tumor-infused skin over the top.

    Nothing can convince me that this beast wasn't birthed into roaring life by the estrogen/progesterone patches my gyno prescribed for my menopause-related insomnia.

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  • JanetMara
    JanetMara Member Posts: 179
    edited May 2019

    Hello Ladies,

    Sorry to just chime in but I'm new here and I am so happy to find this thread,it's been a long time,I was looking for this TOPIC.

    I was diagnosed in 2016,I saw some spiculated tumors on my ultrasound,confirmed with biopsy to be HER2+,I was started on HERCEPTIN, PERJETA,CARBOPLATIN and TAXOTERE--ALL heavy loading dose,every 3 weeks supposed to be but after the 2nd dose, CHEMO was too harsh for me,platelets down to 30,000 ,I had fever104 and febrile neutropenia,pneumonia and sinusitis,severe headache,diarrhea and neuropathy,MO stopped it and I went to my SURGEON who ordered PET SCAN,fortunately it shrunk to 2.5 from 6.9, so surgeon did a L mastectomy with 5 lymph node dissection,sent me for therapy for Lymphedema and it helped control the swelling,was advised to go back for chemo then radiation.I was so adamant and didn't go,instead sought naturopathic medicine,I forgot about the supraclavicular lymph node and last Nov.2018,it has grown so big that I couldn't swallow,so Mo started me again on THCP,same regimen,and it was the same,I was not able to tolerate it after 2 roundsin 12/10/18I was also given NEULASTA 24 hours after CHEMO.It was really hurting my bones and muscles,I even had compartmentalization on my legs,hips and arm muscles. Last April I began to have yellowish skin,dizzy,severe pain on my bones,MO sent me for PET SCAN and the supraclavicular node states,essentially resolved,I had been complaining of dizziness and severe numbness on my feet and pains onmy bones,he just did not pay attention,sent me for RAD ONCO consultation instead,RO suggested to go back on chemo and see a SURGEON,went back to my MO with my platelets of 22,000 with GIANT PLATELETS and RBC 3.5 AND HGB of 7.9, he said he is surprised and I might have ITP,but he did not give me any treatment or medicine,I am so worried,he did not do anything but blood test every week x 2 weeks,I just had 1 last week but no results yet,for the meantime I was monitoring myself and just kept eating redbeets,carrots,papaya and greens.I will have another test tomorrow.

    IS ANYONE developed IMMUNE THROMBOCYTOPENIC PURPURA OR IDIOPATHIC THROMBOCYTOPENIC PURPURA? PLEASE, PLEASE GIVE ME ADVICE!

    I am so scared that with my DXIBC,HER2+ because I tried to research that LOW PLATELETS and HIGH MPV (giant platelets) is indicative of a much decreased survival rate.

    I am praying and hoping that we all will have a better chance of survival and NEW and EFFECTIVE TREATMENTS developed.

    LoriCa--It is good to know if CITY OF HOPE opens up CENTERS in SOUTH OC because I live in the area BUT I wonder if it accepts all insurance,mine is ANTHEM BC,HMO.

    Thank you,

    Janet Mara

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