Tuesday, March 24, 2009

Monday Medical Awareness: Inflammatory Breast Cancer:Part 3

Finally, I had my appointment with a nurse at Planned Parenthood and guess what she said after 2 minutes in the room with me? You have mastitis and I'll get you a prescription for antibiotics. Guess what I did? I stood straight up and told her I did NOT have an infection, I had Inflammatory Breast Cancer that was spreading as we wasting time standing there and I demanded to see someone who could tell the difference between an infection and cancer. I wasn't rude or loud, but I was firm and explained the symptoms of IBC versus mastitis and the length of time I had been dealing with this. Cut to the end of the day -- I got a referral under the Susan G. Komen fund to see a breast specialist (who knew all about IBC) for a biopsy. Made an appointment - another month to wait - this is getting old!

I met with the breast surgeon in December - what an awesome woman! She had much experience with IBC and knew immediately that is what I had. She did an ultrasound and tried several needle biopsies but was not able to get the needle through the tumor. We ended up doing punch biopsies, and even then had a bit of trouble. This was one huge, tough pile of cancer!! On January 7, 2004 by results came back: Inflammatory Breast Cancer. I found a wonderful oncologist who was experiened with IBC, and know that I was very fortunate because most doctors have never heard of IBC, and a large percentage of oncologists don't know much about it. I saw my oncologist for the first time on January 12 and started a hard course of chemotherapy on January 13. I ended my initial treatments (chemo, bilateral mastectomy, 6 weeks of radiation) in July 2004, was stable for about 8 months and then the darn cancer starting spreading again. It's a game I play now, kind of like hide-and-seek. So far the doctor and I have been able to find the hiding places before it gets in too far, but you must stay aware of changes in every aspect of your life - advocate for yourself when you don't feel right!

Here it is, 6 years from my first indication and 5+ years from the start of my real battle against this disease. I have a Stage IV disease, which means it spread from the primary location to other parts of my body. As of today, it has been found in both breasts, the chest wall, the right lung pleura, and sacrum and iliac bones. Tomorrow I go for results of my recent tests and am expecting to see more spreading (we cancer folks call it "mets" short for metastisis). What I said about being an advocate, here's how it pays off big - I'm Still Here!!!!!

Had I not known what I was probably facing and demanded further clinical care, had I not found a breast specialist well-versed in IBC, had I not found a doctor keeping up with treatment for IBC and willing to treat me as a whole person and not just a diseased breast, had I not asked and questioned at every stop what my options were - I would NOT still be here!

The video here is one of the best pieces I've ever seen on explaining IBC and devoting enough time to really talk about it. The Komen Foundation has also recently posted a video specifically on IBC that is worth a watch (posted on Facebook on the Susan G. Komen For A Cure group page). The link list below are my favorite sites to send people to when they have questions about breast cancer and IBC or are seeking help, support, and/or information. Please bookmark them so you can share them, too, if the need should ever arise.

I wish you all the best of health and remember to Feel Your Boobies! And don't wait if you notice *anything* out of the ordinary. And don't think one doctor's word is the last word. No matter what you and your Ta-Tas may face, they are your girls and you have the last word. Be an advocate for your healthy life.

Inflammatory Breast Cancer Research Foundation

Imaginis Women's Health Resource

Dr. Susan Love Research Foundation

Susan G. Komen For The Cure


Monday Medical Awareness: Inflammatory Breast Cancer:Part 2

My biggest piece of advice is this: Be a strong and unwavering advocate for yourself! If you can't, enlist the help of someone who can. Nothing will be more important in battling IBC than making sure you know your options. Let me give you a scenario to show you what kind of effect this can have. In May 2003, I started to feel some pain at the top of my right breast. I had some scar tissue there from the removal of a mole years earlier, so started to search the Internet for problems arising with scar tissue. Believe it or not, there are instances when scar tissue will rupture and I assumed this to be the problem. In June it was worse and swelling quite a bit. Back to the Internet I went and this time went searching for specific breast problems. Most of what I came up with indicated mastitis, a breast infection commonly seen in women while breastfeeding. LOL I was 41 and hadn't breast fed for over 6 years! I kept searching and finally landed on a site for inflammatory breast cancer. Over and over the symptoms were exactly what I had, and in fact, one site said that most doctors initially misdiagnose IBC as mastitis! Now that I knew (and I DID know, in my heart) what was wrong, I set about trying to find a doctor who would see me for a positive diagnosis. Now the real nightmare begins....I had no insurance so I was passed around from clinic to clinic and no one could really give me any information. When I told them I had IBC, they were surprisingly unreactive, which I believe is because they had no idea what I was talking about. Long story short, I found out in August that there is a program in Colorado that will cover uninsured/underinsured women for breast exam and referral, if necessary. After a few hundered more phone calls and another month, I got a list of participating clinics - far and few between outside of the immediate Denver area. At that time, Planned Parenthood participated and there is an office 10 miles away so I called them right up and made an appointment for October. When the day finally arrived, I showed up early so I could explain why I was there and guess what? They didn't have my appointment logged and no one there that could see me (read as "no educated nurse/doctor/specialst in the house"). Deep down I was terrified to have an actual diagnosis - something that would make it real - so I politely rescheduled my appointment. I had to wait another month.

Come Back to Read Part Part 3

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