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NICO_73's avatar
NICO_73
Member
10 years ago

UNDERSTANDING IBC

Hi All,

I am very grateful in finding this group for IBC. Since my diagnosis in June 2015 I have endlessly researched the Internet for up to date information about IBC. I have discovered a few good articles that discuss this very rare disease, but many of these are still outdated and can be very overwhelming when reading survival statistics. I'd love to hear about any more up to date stats if anyone knows where I could find this information. My medical team are very positive about 'cure' but I guess I just want to hear from actual survivors. I'm very anxious about what the future holds. 

Nicole x

9 Replies

  • Hi Hillburn, 

    thank you for your reply. So happy for you to pass your three year anniversary. Fantastic news! I am learning more each day about this IBC thing and hearing from others that have been living with it and doing well. I am keeping a positive mind and staying strong as I move into the next stage of treatment: radiotherapy for 5 weeks. I can't wait for this to be done so I can get myself to Sydney to hopefully finish my Masters Degree in January with a final elective in painting. I really hope I am ok after treatment to travel and complete. Fingers, legs & arms crossed.

    Kindly

    Nicole x

  • Hi Nicole

    I'm sorry for not responding earlier.  I have just logged on for the first time in over eight months.  I have just passed my three year anniversary in September having been diagnosed with IBC, Her2 +, stage 3 plus.  I'm still here!!!  Herceptin a miracle drug! Yes I had the year of chemo, the six weeks of radiotherapy, mastectomy and 18 lymph nodes removed.  All I can say is be positive, approach your diagnosis with the aim that you WILL beat it, it will not be easy but stay strong in the knowledge that you are receiving the best of care and the rest is up to you.  If I could give you my hand right now I would hold on tight and help you along the way.  I will be thinking of you and you will be in my prayers.

    Courage.

    Kind regards

    Hillburn

  • I agree with Lisa, use the latest and most authoritative sites only, then run any questions past your oncologist. Many of us with IBC have had to do this, since it really is a niche type of the disease. 

    So keep looking for the answers to your questions and learn to become your own advocate for all phases of your treatment.

    I had the classic case, had chemo before surgery and radiation and I'm one year post treatment. I'm now on the standard five-year course of Tamoxifen and have never felt healthier. 

     

  • Hi Nicole, it's Lisa from the Policy Team. It is great that you posted in this group as it is a really good place to get support and hear about the experiences of others.

    As you've said, there is a lot of information out there and it can get quite overwhelming. While there is a lot of good quality information available online, there is also information that is inaccurate, out-of-date or quite convoluted.  I just wanted to note that statistics you may come across will be general in their nature only and that not all information will be relevant to you and your specific diagnosis or circumstances. If you have any questions about information you find, it is always best to talk to your doctor or other member of your treatment team.

    Best wishes,
    Lisa

  • Hi Nicole

    Please use Google and type inflamatory breast cancer 2015, then select IBS Research 2015 it will give you an access to the peer reviewed research results on this subject from 1/1/2015-present.

    The full articles may not be available unless you pay for them or subscribe for the journal, however any results that you are interested to read the full articles you can ask a librarian in your local library to obtain them for you.

    Hope this help.

    Cheers

    Piak

  • Thank you for your detailed information and links. I'll get reading. :)

  • I've been researching this topic for the past year and the most comprehensive and informative forum on IBC can be found here:

    https://community.breastcancer.org/forum/81

    Take your time and read through the various threads and you'll find answers to most of your questions. Be sure to sign up at the site and you can set email alerts for the topics that interest you.

    Here's some reading as well.

    Controversy: Terminology of multifocal or multicentric cancer: Some authors refer to the terms multifocal breast cancer and multicentric breast cancer, though the AJCC does not refer to either term and instead uses the term “multiple carcinomas”. These terms have not been used uniformly by various authors and some have even interchanged them. Traditionally, the distinction between multifocal and multicentric breast cancer is based on anatomic distribution of the tumor relative to a breast quadrant. Tumors within a single quadrant are multifocal whereas tumors involving several quadrants are multicentric (Jain S et al. Pathology 2009; 41: 57-67). Multifocal breast cancers are defined as being no more than 5 cm apart from each other in the same quadrant. Multicentric breast cancers are defined as being in different quadrants or as being in the same quadrant but more than 5 cm apart from each other. These definitions rely upon careful dissection of the specimens to exclude microscopic cancer connecting the foci and detailed measurements; this is perhaps why there is variation in the application of this terminology. Whether there is a biological basis for distinguishes multifocal and multicentric breast cancer is suggested by some early studies but remains to be fully elucidated. Various types of clonality studies suggest that multifocal tumors are clonally related in contrast to multicentric tumors, though these studies are small in number (Jain S et al. Pathology 2009; 41: 57-67). As mentioned above, there is controversy regarding the clinical significance of multiple synchronous carcinomas and more studies are needed. In the meantime, we follow suit of AJCC and use the term “multiple cancers” rather than multifocal or multicentric cancer.

    Definition of inflammatory carcinoma and pT: AJCC defines inflammatory carcinoma as a clinical entity. Staging as pT4d requires these clinical features to be present: diffuse erythema and edema involving a third or more of the skin of the breast. Microscopically, dermal lymphatic invasion is typically seen in this setting, however dermal lymphatic invasion alone is NOT sufficient (nor necessary) to diagnose inflammatory carcinoma or stage pT4d. The clinical features must be present; if they are present but involve less than a third of the breast, AJCC states this should be staged as pT4b, not pT4d. Carcinoma that ulcerates the skin is staged as pT4b. If the clinical features are present but dermal lymphatic invasion is not, the patient may still be classified as inflammatory carcinoma and asT4d (though obviously this requires detailed information from the clinician). The detailed distinction between the T4 subcategories is based on outcome data justifying strict criteria for defining a patient as T4d.

    Recommendation: Detailed clinical information is not always given to pathologists. We never use the term “inflammatory carcinoma” as a diagnostic line. Instead, “invasive ductal carcinoma with extensive dermal lymphatic invasion” is a more precise diagnostic line. If we see dermal lymphatic invasion but are not given any clinical information details, we provide the AJCC pT stage based solely on the pathologic findings (i.e. not pT4d) and then comment that if the appropriate clinical findings are present, stage pT4d should be considered. This transfers the determination of the final stage back to the surgeon, who has the first hand data that is required.

    http://labmed.ucsf.edu/uploads/210/101_new_ajcc_staging_of_breast_cancer_what_has_changed.pdf

    Good luck, there's lots of us out there. PM me if you wish.

     

  • Hi Nicole

    Have you been in touch with the Cancer Council ?  They would probably be able to point you in the right direction.

    Also, the American Cancer people have a lot of good information as does MacMillan in the UK.

    If your medical team is positive then they are the ones to ask for the research and statistics.

    Hope that is of some assistance.

    Summer  :-)