Wednesday, January 23, 2013

Preventing and Living with IBC Part 1

I realize that I haven't been very good about blogging lately but I assure you I have been very busy doing some pretty awesome things. I'll write more on that soon. Today I thought I would share a blog written by a new friend. I haven't actually met him in person but my in-laws met him in Belize on a scuba trip. They shared with me the work he was doing in Belize. While my focus tends to be on survivors his focus is on caregivers. One thing we have in common is our desire to promote awareness about breast cancer. The following is a series of Q&A's between the two of us about IBC. Make sure you check out his site posted at the end of this blog. Caregivers are so often ignored and its nice to see someone focusing on them and their needs.

Ben:  First, let’s clear a popular misconception.  Men can get about 1% of breast cancers.   Can a man get Inflammatory Breast Cancer?  
Liz:  Yes, men can get IBC. I don’t know any personally but I have heard that men do get it.

Ben:   It’s my understanding that IBC is a killer.  Can you comment on if a person is diagnosed with IBC, what are their chances?

Liz:  This is a tough question. IBC is very aggressive and it has taken more of my "sisters" than I can count in the two years since I was diagnosed. Just this weekend we lost two in an online group I belong too. This is why awareness and research are so important. The world of IBC has come a long way but there is still so far to go. For those of us that are NED (no evidence of disease) which is as close to remission as we get) we still face a ridiculously high chance of recurrence. The good news is that there are people who not only make it through treatments and become NED but go on to stay that way for years. Just the other day I "met" two long term survivors who were both 10+ years out from treatment and doing well. In terms of statistics IBC survivors tend not to talk much about them. They are very poor but we are hoping that with more awareness of both physicians and women we can get people diagnosed earlier and with new research and treatment options we will see this change more in the near future.

Ben:  How did you discover you had IBC?

Liz:  I had a lump for several months while I was pregnant. Right before my daughter was born  (she came 6 weeks early) the lump grew rapidly. I was misdiagnosed a couple of times but it became obvious that something wasn't right. I ended up developing all of the IBC symptoms in the first two weeks after my daughter’s delivery. I was out of town when I had her and she spent 2 weeks in the NICU but as soon as she was released and we were back in Missouri I saw a surgeon. She did a biopsy that day and a week later we got the call that I did in fact have IBC. My actual diagnosis was IDC (invasive ductal carcinoma) and IBC stage III.

  Ben:  Can you list symptoms of IBC that might help both men AND women spot the disease in themselves or their loved ones.

Liz:  Symptoms can include any of the following:
Discoloration, giving the breast a red, purple, pink or bruised appearance. Some say it looks like bruising some say like a rash some even say it looked like a bug bite.
Breast swelling, which one breast is suddenly larger than the other.

Breast that feels warm to touch and may look infected.
Itching or shooting pain.
A dimpling of the breast skin that feels like the outside texture of an orange (peau d’orange).
Thickening of the skin.
Flattened or discolored nipple.
Swelling in underarm or only on one side of neck.
Might feel a lump, however lumps are not common in IBC.

Ben:  A lot of these symptoms are similar to “normal” breast cancer.  Yet, I have heard many say IBC is different.  Can you elaborate on IBC’s differences.

Liz:  IBC is different for many reasons. First because it’s a very visible cancer. Most breast cancers remain unseen by the eye and are only picked up by machines or because a lump is felt. IBC in many cases also doesn't present with a lump. (I had one but most do not.) Many women are told that breast cancer doesn't hurt, however, IBC can be very painful. Looking back itching and pain were my first symptoms. By the time I was diagnosed the pain had become almost unbearable. You hear a lot about stages when you talk about cancer and with IBC you are either stage III or IV. There is no early stage of IBC. One of the biggest differences and why it’s so important to find a physician that is familiar with IBC is that its treated different from most breast cancers. The protocol is Neo-Adjuvant Chemo (Chemo first), followed by mastectomy and then radiation. Depending on some of the other factors like if you are ER or PR + or if you are Her2 or triple negative will depend on the type of Chemo and what other treatments you need.

Ben:   If a woman (or man) as suspects they have an IBC symptoms, or are just worried, how should they proceed?

 Liz:  My biggest piece of advice is that if something isn't right, go seek a doctor. Any changes in your breast even if they are minor should be checked out. If you don't feel comfortable with what your doctor says, find a new doctor and keep seeking answers. But remember it’s not just a rash. If one suddenly grows larger or the skin "thickens" get it checked out.

 If you have a rash or infection such as Mastitis that doesn't go away after a round of antibiotics seek a specialist that has treated IBC. You should know that typical testing for breast cancer doesn't always catch IBC. An ultrasound is usually better than a mammogram for catching IBC. If there is no lump you would also need a different type of biopsy as well.

Ben: Getting checked is so important, even for men. I know the reason we found cancer in Valerie was because I had a lump in my breast and went to go get it checked out. She had symptoms too, so she went with me.
Ben is a pastor, writer, software developer, and former cancer caregiver.  Valerie, his wife of 12 years, died of breast cancer in 2009 at age 36.  Ben now works in Belize with Caregivers of the terminally ill, along with writing about care-giving and cancer.   Find out more about his adventures at

Stay Tuned for Part 2 with Liz