Tiny vent warning…. A few weeks ago I placed a shorter version of this post in a support group that I monitor. I also wanted to post this information on Breast Investigators because I have been on the phone for days with women who are being treated for Inflammatory Breast Cancer (IBC). I am just stunned by what I am hearing from them about their treatments. This disease is very different from general breast cancer, but it is common for women with IBC to receive treatment which might be adequate for general breast cancer but is very inadequate for Inflammatory Breast Cancer. This treatment includes breast reconstruction prior to completion of the standard of care that IBC requires which may negatively impact the success of treatment.
The following is my IBC support group post vent. It is just my opinion since I am not a doctor, but I am echoing the specialists:
“So from me to you, just laying this out here, IBC sister to IBC sister… just because you didn’t get treatment this way, it does not mean you are doomed. We have so many new people and more coming forward every day asking, “what is the standard of care for IBC?”
The standard of treatment for this truly sucky disease is:
- Surgery, which is a mastectomy, a radical one, which is not skin sparing.
- Pathology, if it comes back clear, you move to radiation. If pathology is not clear, possible to have more chemo.
- Six weeks of daily radiation, sometimes twice a day depending on the needs of that patient.
- Then if possible, reconstruction after a waiting period of two or more years for about one million reasons….hopefully not one with metal implants that will limit future testing. Shocking to hear, but I have met women who had to have their post cancer implants removed to allow for testing!
I am writing this post because I see many women having chemotherapy followed by a mastectomy with same-day reconstruction, which delays radiation and could allow time for the cancer to grow. Remember, there is a reason for that radiation; it is a very important part of the IBC care protocol. Women often tell me there was no discussion with their cancer team that it might be best to wait for reconstruction, or even if having reconstruction is a healthy option for them.
I am not laying this message out here to get anyone all up in arms that their caregiver is not a good one. I am happy for those sisters who have reconstruction, as long as it is later and not at the risk of their care. In a world of “we are not defined by our cancer” or “my cancer was just a bump in the road” banter, the message for a cancer patient to delay or Heaven forbid, not have reconstruction at all is a hard one to get out. The message is an important one because IBC is a different type of breast cancer and has a different standard of treatment that is based upon how IBC grows and spreads in the body. If your treatment for IBC was not in the order listed or if you had reconstruction while still in treatment, again, that does not mean you are doomed. IBC is a very sneaky disease, and to be best able to beat our cancer we have to understand our cancer.
If your cancer team makes changes in your treatment protocol, hopefully that is to address your special needs. The care I am writing about here is the agreed upon standard of:
- Dr. Nato Ueno, director of the the Morgan Welch Inflammatory Breast Cancer Research Program and Clinic MD Anderson in Houston, TX, (the first clinic in the world devoted to IBC care)
- Dr. Massimo Cristofanilli, of Jefferson Hospital in Philadelphia
- The staff at Duke
Having said all of these things, I know some IBCers do not have a mastectomy. Those tend to be stage 4 ladies. It does not mean the doctors have given up on them; it is a personal choice based on that person’s needs. That choice is a perfect example of very personalized care.
Personally I find it harder to live with doubt than fear, and we need to be comfortable with our care. As much as we want our care to be personalized, it is hard not to look around to “see what she is having.” Coupled with the pressure that we have to be “whole” again, sometimes we can be rushed through our care or offered “wholeness” too soon. I had a triple negative Inflammatory Breast Cancer diagnosis. What worked for me, might not work for you. What worked for you, as a non triple negative IBC, might not work for me. But some things are somewhat standard, and that is why I am hoping you share this message today.
Share, chat, and thank you for listening!”
Terry Lynn Arnold
Want to hear from some doctors on standard of care?
This is my favorite link http://buff.ly/S0eCKT
As education grows, I hope to list more.