Looking for other IBC who are HER2 negative, ER+ PR+

Thank you Kwhite and Lori. I (and my younger sister who does not have bc) have made sure our older sister is aware of MD Anderson, as she is seen in California at a HMO and we are not sure she is getting the best info and advice there. I appreciate Ling's posting on another thread of the recent thorough IBC discussion with the group led by Dr. Cristofanelli. My older sister is one who does not want to "know" much about the disease due to fear, and her husband is somewhat limited in research. So my sister's 2 daughters and my younger sister and I are seeing what we can help with.

These are my main concerns in regard to my sister's IBC:

With IBC making up only somewhere between 4% and 6% of the larger general breast cancer population it has not had much funding for research until recently. We are hoping to at least have our sister become one of the people in Dr. Cristofanelli's IBC registry, so that info from her cancer will contribute to what knowledge there is about IBC. Are any of you part of his IBC tumor registry?

Among that very small group of 4% to 6% who have IBC, the vast majority are HER2 positive and/or ER/PR negative. So those like my sister, who is HER2 negative and ER+/PR+ are a very very very tiny group among the larger group of IBC patients. Most of the what limited funding there is available for IBC studies is focused naturally on trying to solve the question of which treatment is best for the majority of IBC patients. The only difference in treatment is that patients like my sister are eventually treated with hormonal therapy, such as Femara. There is reasonable doubt that the chemo given to such patients does any good at all for them. My sister has already completed the A/C x 4 and the Taxol x 4 and is on the Femara. Her onc seems to want her to be on chemo "for the rest of her life". The question is, for these patients is more chemo likely to achieve anything at all, given that the studies are based on how chemo works for the majority of IBC patients, who do not have the same characteristics as my sister?

In addition, the majority of IBC patients share 3 characteristics: obesity, younger age (not menopausal), and an African-American heritage. Once again, my sister also does not fit this profile, other than obesity. It seems likely to me that patients like my sister very likely would not benefit from having the same "blanket" treatment that is being used for a group of patients with very different characteristics.

Thank you for any responses,

AlaskaAngel

Thanks so much everyone for taking the time to reply. My older sister and I have had breast cancer for quite a while and so are not new to general bc -- and we've both been through chemo, rads, and some hormonal therapy (with my older sister only recently having completed hers). But

1) because the group of bc patients who have had IBC is so very small, and

2) because research has only very recently been done at all for IBC, and 

3) because research about treatment for any IBC is still very very limited, and

4) because there is clearly a set of characteristics that most IBC patients have that my older sister doesn't fit into (even though she does have IBC)

I am very concerned that those who are in that tiny, tiny subgroup of IBC that does not have the primary characteristics that most IBC patients have might be treated routinely with therapies that are better suited to the larger group of IBC patients.

For example, when looking at the clinical trials offered through MD Anderson for IBC, the focus is on treatment regimens that work best for those who are HR- and/or HER2+. Considering the limited resources available for IBC as whole I can certainly see the reason for that; yet there ARE those IBC patients who do not fit that picture but are still are under that umbrella in terms of the recommendations for "standard treatment for IBC".

Thank you Lori for explaining that the average age for IBC is 55, as I did not know that. The excellent study that Ling posted in another thread that was presented by Cristofanelli and others and discusses IBC only said that most IBC patients were young, so I was thinking that most would be premenopausal. It would be more correct to say that likely there are more premenopausal patients in the IBC population than in the general bc population. The study also indicated that most IBC patients were obese, which is also true for most breast cancer patients as you mentioned, but it still IS one of the 3 characteristics that most IBC patients have. The third predominant characteristic for IBC mentioned in the study was African-American heritage. I am trying to consider these different features strictly in terms of whether some IBC patients really might have enough of a very different genetic picture, different enough that they are not likely to benefit from receiving the "standard treatment for IBC", even though that treatment might be right for the rest of the patients having IBC.

IBC patients tend to be treated in a very isolated way. For example, even though my sister is being treated in a major metropolitan area of the hugely populated state of California, her oncologist told us that there are only a total of 13 patients who have had IBC in the general area where she is being treated. These are not the "currently being treated" crop, these are a total of all the ones known in that area. Oncs in that area have very minimal (if any) direct experience in treating IBC.

So here is the general "picture" for IBC:

Positive dx for bc

African-American heritage

Young

Obese

HER2 positive

ER/PR negative

Most oncs with little direct experience in treating IBC

My sister shares only 3 of the above characteristics (obesity, having breast cancer, and being treated in a thickly populated area by an onc with minimal experience in treating IBC).

There are scattered others with her characteristics, a tiny, tiny group. I'm just trying to understand whether or not it is relevant in terms of the treatments that are known to be generally not beneficial for HR+ patients, older (postmenopausal) patients, and HER2 negative patients, and whether or not this is being openly recognized, since individual oncs have so little direct experience in applying treatment to any IBC patients, much less to the tiny group my sister fits into.

To answer Lori's question about staging, my sister has some "lung nodules" and I am still trying to find out whether her onc is simply assuming that anyone with IBC who has lung nodules has IBC mets to the lung or not. She also has a another area in the musculature of the chest that is questionable but not defined. I'm still not sure just what she actually has in terms of mets. She has had PET/CT that showed nothing else anywhere else, and will be having another somewhere around the end of this month. Her onc was "out of town" during the weeks when I visited with her in person, and she herself is not able to grasp the more complicated aspects of diagnosis and treatment, nor is her husband, or even her daughters, who have asked me to help.

Thanks again all of you for looking at this "picture" with me and your helpful explanations.

AlaskaAngel

Just want to post an update. My older sister saw her onc and he said her markers and other lab tests were very good. No CT or PET or any imaging at this point. He will be calling her in 2 months, and then will see her again in person 2 months after that. I'm a bit hesitant to trust the "no symptoms/good markers/good labs" without some imaging, but I do feel strongly that her current status is genuinely "good" because she is neither HER2 positive nor triple negative. I know my interpretation is more difficult for those who are triple negative, although likely less so due to trastuzumab for those who are at least HER2 positive, but I'm hoping that anyone who has characteristics like my sister (ER+, PR+, HER2 negative, over age 55) may find my sister's current status encouraging.

She is 63 years old and has had A/C x 4 (onc said it did nothing for her), and then Taxol x 4 (onc said the results were minimal for her). She is on Femara.

AlaskaAngel