Inflammatory Breast Cancer – Diagnostic Challenge

Inflammatory Breast Cancer–Any Change Could be Serious

Inflammatory Breast Cancer is a deadly diagnostic challenge as it is harder to spot but no less lethal.

A Personal Story by Rebecca Martin

If you google Inflammatory Breast Cancer you will undoubtedly run across this information from the American Cancer Society.

“Inflammatory breast cancer (IBC) is rare and accounts for only 1-5% of all breast cancers. Although it is often a type of invasive ductal carcinoma, it differs from other types of breast cancer in its symptoms, outlook, and treatment. IBC has symptoms of inflammation like swelling and redness, but infection or injury do not cause IBC or the symptoms. IBC symptoms are caused by cancer cells blocking lymph vessels in the skin causing the breast to look inflamed.”

Perhaps you have been one of the few who have seen the PSAs describing symptoms and warning that any changes to the breasts are to be taken seriously. One such warning stuck with me and maybe saved my life. It is a disease few know about and disturbingly many of those unfamiliar with it are doctors and others in the medical profession. This is disturbing in that, although IBC accounts for 1-5% of all breast cancer, it accounts for 10% of all breast cancer deaths.

Inflammatory Breast Cancer Recognition

It is recognized through several different symptoms. It is not detectable by presence of a lump. Instead it may present as a bruise, swelling, tenderness, redness or rash, a change in the skin often described as an orange peel look, dimpling, an inverted nipple, itching, a difference in breast size and/or tenderness in the lymph nodes under the armpit or collarbone.

Statistically, you are more likely to be at risk for IBC if you are obese, African-American, or a young female. Aside from being female, I am none of those things. But in 2016 I was diagnosed with stage IIIb Inflammatory Breast Cancer.

My journey began with a increasing level of fatigue. I often said to friends that I just didn’t feel like myself. My active lifestyle was becoming more burdensome. And when I noticed a small bruise on my left breast, I thought nothing of it. Weeks went by and the swelling and hardness increased and when I saw a dimple appear, I knew what it was because that particular symptom was included in the media I had seen.

At this point many women go to their family doctor complaining of redness and swelling. Due to the rarity of the disease they are more than likely to be diagnosed with mastitis, prescribed antibiotics and sent home. But IBC has only two stages III and IV. By the time it can be detected it has sometimes already spread to other parts of the body. The delay in proper diagnoses can be deadly as IBC is an aggressive cancer which can spread in weeks or even days.  Many women seek out several opinions before receiving an accurate diagnosis. And unfortunately it is too late for some.

One in three cases have already metastasized by diagnosis. By diagnoses the cancer has already grown into the skin and is considered locally advanced. IBC cannot be detected by a mammogram like typical breast cancer. The delay in proper diagnosis is one reason more education is needed for the public and medical professionals. This does not only affect women; it affects men too. Approximately 2000 men get breast cancer annually and 1-5% of those cases are IBC.

Quick Medical Action Saved Me

I was fortunate. My primary care physician was familiar with IBC and took one look at me and rushed me off to the oncologist the same day. I knew, he knew, but now it was time for conclusive tests. That part of cancer diagnosis becomes such a blur if you are going through it. The same day I was given a mammogram, a sonogram and biopsies were taken. Then you wait for the cancer to be identified and staged. Before I knew it, I was scheduled for surgery to install a chemo port.

This is the next stage that a doctor unfamiliar with IBC can err; treatment plans. Normally a person diagnosed with breast cancer would be planning for surgery. But the international protocols for treatment of IBC are different and call for chemotherapy first. This is done to decrease the cancer as much as possible because surgery at this point could increase the risk of it spreading through the lymphatic system and is unlikely to contain and remove all the cancer cells. The protocol for IBC is chemotherapy, surgery and then radiation.

Standards for Treatment of Inflammatory Breast Cancer

The standards for the treatment of IBC were established by an international expert panel on inflammatory breast cancer originally in 2008. It was felt that a consensus of all experts in the field was needed to form a standardized model for the diagnosis, treatment and followup care of IBC for the medical community. IBC had an extremely poor prognosis at that time. The expert panel identified that there was also a serious lack of clinical trials aimed at IBC and research, and part of the goal was to target a strategy to further our understanding of the disease.

I prepared myself for chemotherapy in probably a very typical way. I googled information. At that time, the pre-2011 statistics were still prioritized on google and the official survival rate for Stage III IBC was 40% at five years, while the median life expectancy for Stage IV was at just under two years. That is like getting hit by a truck. Only much later would I learn that a new drug introduced in 2011, Herceptin, along with proper protocols, would raise my chance of a five year survival to 70%.

Preparing for chemotherapy is a difficult thing to do. I was looking at what was referred to as “some hard core chemo” administered every three weeks to give me a chance to recover in between. The weeks before I ate more. Every movie shows some haggard actor reduced to skin and bones by cancer. I scheduled that hair appointment for a short haircut, confident that I would be the one to not lose my hair. I talked to family and friends. I loved everything I saw, or smelled, or tasted and said goodbyes a million times to things I thought I might be experiencing for the last time. And I avoided asking my oncologist about my prognosis. The grim demeanors of everyone involved in my treatment plan made that question seem impossible to ask.

My first chemotherapy and every one to follow started early in the morning with bloodwork. And then the dreaded insertion of the needle into my port. My chemo port was surgically implanted in my chest and consisted of a target disc and a tube sewn into a pulmonary artery It’s hard to deal with a needle aimed at your chest and I admit, I was a terrible coward about it, even after dowsing the area with numbing agent an hour before my appointments.  An hour or so would pass waiting for the lab work and drugs to be prepared and finally chemo would begin. It was always preceded by drugs to help lessen the effects of chemo and then hour after hour of nothing to do but watch what felt more like poison than a cure some days drip down the tubes.

The first chemo appointment I left feeling triumphant. That was nothing, I had conquered it in champion fashion. I went home with a timed Neulasta injection set to go off 24 hours later to help boost my immune system. But I was feeling great. Before the second appointment I had already shaved my head when my hair began to hurt and fall out and was finding out that the worst day is not the first day, it’s the days that follow. It is like having the worst flu you can remember every day. You eat little, but the steroids before chemo guarantee no weight loss.  And just about the time you are feeling better and can eat and be somewhat normal…it is time for the next round of chemo. You learn to use those good days.

During this time every ache or pain or complaint is taken very seriously and scans are frequent. Because of Herceptin, heart echoes are done as well to check for heart damage. It gets very real, very fast. I am focusing on the chemotherapy because many women I have spoken with who have gone through breast cancer have had a choice of whether to do chemotherapy. For IBC, there is no choice. After my third chemo when it is time to evaluate the progress I asked my doctor what would happen if I quit. By then I was very miserable and really thinking I couldn’t face much more. She said that I would probably be gone before the holidays and not in the most pleasant way. But the good news was, chemo was working and suddenly my prognosis was very much better.

Once I completed chemotherapy I was not done with infusions. I would receive Herceptin infusions for the next year. I was HER2 positive which means my cells had more receptors and Herceptin is a receptor inhibitor. Herceptin would shut down the spread of cancer throughout my body permanently.

Then it was time for surgery. This also differs for IBC patients in a few different ways. First, because it is not a typical breast cancer and most likely to recur in other areas of your body, it is not necessary to remove both breasts as it is highly unlikely it would recur in a remaining breast. But it is necessary to do a non-skin sparing modified radical mastectomy. Reconstruction is not done at this time and it is recommended to wait at least a year after treatment ends to consider reconstructive surgery unlike other breast cancer. And ideally to forego surgery. However it is recommended that all lymph nodes adjoining be removed and personally I had just a few removed. My doctor decided that the threat of lymphedema outweighed the extra lymph node removal. This was due to my good response to chemo. Every case differs. This was not discussed; pros and cons. Something that continues to cause concern. I did have mild lymphedema which was quite unpleasant. But a qualified oncology physical therapist was prescribed and I was fortunate to avert that issue. However, for the rest of my life I can have neither blood pressure taken or needles in my left arm for risk of triggering lymphedema. Lymphedema is an incurable condition. Lymphedema causes swelling in the arm on the side of lymph removal as the nodes which carry away fluids have been removed.

It is after surgery that I received the news that there was no evidence of disease. Surgery was the easiest phase and once healed I began making the everyday trip to radiation. By that point you are not feeling entirely human anymore. Treatment can be a very dehumanizing process which strips away dignity.  First thing every morning I headed for radiation and after thirty plus sessions, I was beyond fatigued. But the first funny bristles of hair were reappearing. Taste buds began to recover and life was looking a lot better. And the months of infusions ahead just seemed to be leading to a finish line which was now in sight.

You never return to the you who began the journey. It’s a hard battle for the human body to go through and many fight their way back to a new way of life with many ups and downs. After treatment I was set to begin five years of aromatase inhibitors, drugs which shut down all hormone production in the body. At that point I raised the white flag and left treatment. The wear and tear was already enough. We all make the best decisions we can for us.

The Phases of Recovery

There are so many psychological phases survivors go through. You may have lost what you believed to be close friends and embraced those who unexpectedly gave their support. Your body has changed and the stages of grief are a real battle back to self-acceptance. And there is fear of recurrence which is extremely difficult once you are past the intense care you received during treatment. Support groups offer comfort and there are many programs available through the hospital, online and even at your local YMCA.

Today I am still ‘no evidence of disease’ and my five year survival anniversary is approaching. There is neuropathy and the frustration that comes with it. I can taste things but they are subtly different than my memories of them. My hair is absolutely straight where it once had waves, and thinner than it was. My eyebrows are almost nonexistent. I forget that I have one breast sometimes. But that is a scar I am proud of, at last. It was a journey to get there filled with some tears. I am easily fatigued and a lot weaker. But I am here to tell you, there is life on the other side of IBC. You will not go through it unscathed. But you won’t be unchanged either. Life is different after cancer. Perhaps the hardest thing is going through treatment and realizing that once it is all done you are not being restored the exact person you were before.

If I could say one thing to all people about IBC: take any change in your breasts seriously. Get second opinions and be your own best advocate.  Seek out others who have experience with IBC and remember chemo, surgery, radiation.

Inflammatory Breast Cancer is 1-5% of all Breast Cancers

1-5% of all breast cancers are IBC. The statistics said it was almost unthought of that I should be diagnosed with it. But I was. It can touch anyone. It is not genetic. It is not environmental. No one knows exactly what causes it yet. Studies are being done which lean towards some type of viral component. Hopefully new advances are on the horizon. Prior to the introduction of Herceptin, my prognosis was not as bright as it is today. New advances with Herceptin have also increased survival rates.

It is important to note that women in the black community have 70% more incidents of IBC than white women.  And this is an important issue when we factor in racial disparities such as access to early diagnosis and treatment and long term follow up care. It is imperative that we keep in place those facilities who provide cancer screening for all. And educate the medical professionals involved in screening. Any delay in diagnosis of IBC can spell the difference between life and death.

This also brings up the problem of high risk insurance pools for IBC patients.  Being located to the cancer pool is virtually a death sentence for IBC patients. High risk pools are known for delays in treatment and one thing IBC patients don’t have is time.

IBC is no longer the poor prognosis it once was and so much progress has been made in the treatment and understanding of the disease. I hope you will not dwell on the numbers you might find on google and be reassured by the survival stories. Make sure women…and men in your life are aware. This disease can strike at a very early age as well. IBC is the most aggressive and deadliest form of breast cancer. But there are more than just statistics, there are real people behind those numbers. I am just one of them. Survivors today are living twice as long as those in the 70s.

For those who might find themselves, like me, facing that journey, or finishing that journey, don’t let it consume you.  Be educated. Don’t be immersed. It is going to be with you, it’s not you. Although the threat of this disease can be very present, we are so much more than cancer patients and survivors. There will be good days and bad days, but every day is a day that we are still here to experience.

For more information on Inflammatory Breast Cancer, go to the IBC Network Foundation

This story was written by Rebecca Martin who has been the primary author of our blog content at https://carbonmonoxide.com/news since last summer. Rebecca and I have been writing content about brain damage and health since our seminal web pages in 1996 and 1997 http://tbilaw.com and http://waiting.com  For our Holiday Wishlist published all of those years ago, go to https://tbilaw.com/brain-injury-christmas-list.html

Becca and I hope to be providing you important and interesting content for another generation.

Gordon