IBC – My friend’s story-Important read

My eyes have been opened to Inflammatory Breast Cancer, and the way it is easily misdiagnosed or not diagnosed at all. I am horrified that this is going on and we need to educate our doctors to know about this type of breast cancer. I am honoured to be associated with Peggy Stephens who is associated with the Inflammatory Breast Cancer Foundation.  Their website is www.eraseibc.com Check it out for lots of information about IBC. I am going to be a guest on her internet radio show on April 17th at 9p.m. Just go to the website and click on Radio show.

One of the members of my Dragonboat team is Colleen and her story is very insightful about IBC. PLEASE READ IT – IT COULD SAVE LIVES.

Colleen’s story…

At age 45 I was diagnoses with Ductal Carcinoma in Situ (DCIS) by the Mammography Radiologist who had done a puncture biopsy. I had a lumpectomy, and a group of lymph nodes removed, followed by radiation. At the age of 48 the surgeon who had done my lumpectomy did a biopsy of the same breast and diagnosed me with Inflammatory Breast Cancer on October 14th , 2009

Getting to the point of diagnosis was quite the journey. In January 2009 I had a mammogram and it came back clear. In February I noticed a rash on my breast and was treated with topical creams which didn’t work. It wasn’t until about August that I noticed the rash was spreading to different areas on my breast. I was now getting concerned, so my GP sent me to a Dermatologist. I saw the Dermatologist six weeks later whereupon he wanted me to come back in 3 weeks to have a biopsy. Prior to my appointment with the Dermatologist I had been searching the internet about the rash and my searches kept coming to this cancer called Inflammatory Breast Cancer , IBC for short. I was also certain by this time I had Breast cancer again and had my GP make arrangements with the surgeon who had done my lumpectomy perform a biopsy.

My treatment for IBC was much the same as with Lobular and Ductal carcinoma, except my Oncologist was measuring the rash after each chemo treatment to see if the rash was shrinking. I had chemotherapy over a six month period and the shrinkage of my rash/ tumour was 2mm. My whole breast, all of the skin, and muscle involvement was deemed the tumour and all of it was removed during my mastectomy. To close the mastectomy site skin grafts were removed from my right upper thigh and stapled into place to cover the surgical site. I did not have radiation as my doctors involved believed that the skin grafts would die. I am currently on an anti-cancer drug.

IBC is a sneaky cancer when compared to Ductal or Lobular cancer. The latter two can most often be discovered by self-examination, mammogram, or ultra sound because of lumps or changes within the breast. IBC is rarely found by these methods. IBC is a more visual cancer, and is often misdiagnosed as a breast infection, and as my Oncologist told me many GP’s never see a case of IBC in their entire careers so treat it as a dermatological issue. However this delays the diagnosis of IBC which is usually why IBC is most often found at the stage three level or worse, with a poor prognosis.

I am sometimes very self conscious of my mastectomy site or what I now call the vacancy. I have noticed after Dragon Boat Practice in the change room the different ways that mastectomies have been done, and I have noticed that mine is so drastically different from the gals on my team. They had their own breast skin to close their mastectomy sites. I have a seven inch round vacancy, with deep scarring along the edges, my grafted skin looks like chicken skin, and I can see the outline of three of my ribs.

I don’t think that the three cancers mentioned are different emotionally or physically, however; they are different biologically, and physiologically. And they are diagnosed all the same with a biopsy. It’s getting to the point of biopsy is where the difference lies with IBC. People are scared regardless of the cancer they are battling and I think that anyone battling cancer faces challenges.

My initial challenge was getting the diagnosis confirmed, my second challenge was that my 18 year nephew was killed by a drunk driver at the same time I was diagnosed and three weeks prior to my surgery my friend passed away from the same cancer I had. Needless to say it was very difficult to remain positive and strong as I went through my treatment, surgery and recovery. I also have some usual challenges such as clothing and bra’s not fitting well, and pain around my vacancy, especially when I use my right arm for extended periods of time. However; the biggest challenge is yet to come -Reconstruction.

Upon a follow-up visit to see the plastic surgeon , the doctor asked if some interns could observe, well I always welcomed the students. As the appointment was ending one of the interns asked how a reconstruction would be done, my Doctor’s reply was “I don’t know”. I have an appointment coming up to discuss the reconstruction issue, but at this time I do not know how I will proceed.

Finally after all of my treatment, follow-ups, and recovery, I crashed into a very dark place. At one point I was seeing both a Grief counsellor and a Cancer counsellor. I am not in that dark place anymore, but I do fear another recurrence which is not unusual. Finally I feel more research is absolutely necessary concerning the diagnosis and treatment of IBC

Two Time Cancer Survivor and Thriver

Colleen Heron

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About Janac Mastectomy Wear For Fighters & Survivors

President of Janac Mastectomy Wear - est.2003 2x breast cancer survivor (1995 & 2009) decided to design a breast prosthesis that is comfortable and affordable. Also, designs sports tops that can accommodate any breast prosthesis. www.janacmastectomywear.com
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One Response to IBC – My friend’s story-Important read

  1. Rita Banik says:

    this is really nice, will reply in comments later, very sad to hear such issues faced by women

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