In search of a stage 4 IBC support group

Thsre are Forums at this site for Stage IV and IBC.

Where are your mets (metastasi)? That would impact your TX outcome more.Also the QOL to the end.

Second opinions are important here and ideally from a NCI designated cancer center. The majority of stage 4 BC patients are treated first with something other than chemo (although knowing the specifics of your diagnosis would help others comment here) and live with a good QOL. Come visit the stage 4 forums. Bestbird also has an incredibly helpful Mbc resource

Jen and gracie, as I look at the NCCN guidelines for stage iv IBC, it shows chemo as the first step. JennInspirations, I'd encourage you to talk with your oncologist about quality of life and the recommended treatment plan. And try not to engage in either-or thinking. I hear your fear and pain and it is natural. But the choices before you do not necessarily consist only of a few months of fun at the beach vs. sick and alone in bed for two years. It may well be that you will have some difficult times and yet still feel that life is definitely worth living and treatment is worth having.

Here is a link to the Stage IV and Metastatic Breast Cancer Only Forum:

https://community.breastcancer.org/forum/8

Jenn, there are many great resources on this board. Agree with the posters above encouraging you to check out the IBC boards and to private message posters that you relate to. Stage IV means that the cancer has traveled to a place outside the breast and the lymph nodes, which are located primarily in the armpits and surrounding area. I am not sure from your post where that metastasis has happened; knowing that will be helpful to others here who can reach out to you about their individual experiences.

With breast cancer, there are broad types (IDC, ILC, IBC and some more rare types). You have indicated that your have IBC. Your pathology (the report provided after a biopsy--the initial procedure that takes a chunk of the tumor/skin and tests it) provided info on your hormone receptors. If your cancer grows in response to exposure to hormones (estrogen and/or progesterone--ER or PR for short) it is hormone positive, and doctors try to stop the action of the hormones by either using antihormonal medications or surgically inducing menopause (and chemo itself often induces menopause, at least temporarily.) Amy Berman also has hormone sensitive cancer, hence the pill she takes daily referenced in her writings.

From your post, I assume you to be hormone positive (known as ER and/or PR+) and am guessing that your docs are doing "neoadjuvant chemotherapy", which is chemo done immediately after biopsy. Patients then sometimes go on to have a lumpectomy (removal of the tumor and tissues around it), or a mastectomy (removal of the breast) post neoadjuvant chemo. Some Stage IV patients do not have those surgeries, and from what I have read, with IBC there is not always a discernable "tumor" as in other types.

HER2 is another type of "receptor" in a way. To be HER2 positive means that the cells in your tumor have a large amount of a certain protein which causes the cancer cells to multiply very quickly and make it a more aggressive cancer. if you are HER2 positive, there is a targeted drug called Herceptin which is typically used in conjunction with chemo to address it. In and of itself, Herceptin does not typically cause the side effects of the usual "chemo"-- it is targeted to the HER2 cells and is chemically different than chemo and known as a monoclonal antibody. It is a pretty big deal, and has made a big difference for HER2 positive folks. Some docs will provide it solo without the usual recommended chemo, most will not.

The genetic tests are to see if you have any existing genetic propensity for breast cancer (such as BRACA 1 or BRACA 2; there are many others). Most people don't, but it is useful info for your docs and family to know.

The info above is very basic and I hope it does not scare you. What scares me is that your providers have not explained exactly what your cancer is, and why they are doing what they are doing to treat you. What you should also be aware of is that you have options, particularly if the treatment provided is making you so miserable, and waiting until February is just not good enough, so call and ask for an appointment sooner and bring someone with you, and tape the appointment if they allow so you can refer to it later. If you opt to stick with the chemo, supportive meds that relieve diarrhea at least somewhat, are available. And there are also treatments to address your infection risk (many here have used Nuelasta and similar meds as needed to help boost immune function.)

Take a look at those papers they gave you, or your patient portal if you have one, and reach out to the people here to figure out your roadmap. Find out the names of the chemo drugs your are on, and whether you are currently on Herceptin. I am guessing your current protocol may be Taxotere, Carboplatin, Herceptin and possibly Perjeta--another HER2 drug--shorthanded to "TCHP" which is typical for HER2 IDC patients, but I don't know much about IBC.

You are in charge: if you want to do things differently, you certainly can--Amy Berman is very helpful in providing some info on options that docs will typically not offer. But you need to know what you are dealing with before making those decisions. I wish you well, and thank you for the work you do with special needs kids.