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What a great story, Phyllis. Ginny's experience with cancer truly changed her life - and I'm sure the lives of many other IBC survivors, who maybe wouldn't have survived without her advocacy. Thanks for sharing this here. And thanks for sharing the same path with Ginny, as you inspire women with IBC to do what you're doing: survive, thrive, and reach out a hand to help others. PJH
Thank you Phyllis for a wonderfully written story about a wonderful woman who not only has been instrumental in creating a network of support for women dealing with Inflammatory Breast Cancer, but who is on the front lines of the fight to find a cure! When my wife was diagnosed with IBC in 2004, thanks to Ginny and Owen, there was a place online to get information and to connect with others fighting the same disease and for that I am very grateful.
I have recently been diagnosed with Stage III breast cancer. I quickly developed a palpable, painful lump which was covered by discolored (red-to-purple) skin which became very thick and "leathery" feeling. Lump became painful so I went to doctor who thought it was a cyst and ordered a diagnostic mammogram. Long story short, I was told it was invasive ductal and I had lympectomy which revealed 5/19 positive for cancer. I had PET scan and breast MRI which both indicated significant finding of "skin involvement which can be seen in inflammatory breast cancer."
I'm wondering now if I have IBC as well as invasive ductal carcinoma.
Has anyone had this experience. I fear my doctor totally missed the IBC piece of my cancer. I have discussed with my oncologist and the good news is that the treatment is the same since I was a Stage III but I'm angry and frustrated that I may have been misdiagnosed.
My cancer is responding to my chemo treatments which have been every 2 weeks for a total of 8 treatments to be followed by mastectomy and then 30 radiation treatments.
Bonnie, your experience is not unusual, and as Ginny's story shows, it is possible to have more than one type of breast cancer at the same time. Also, because an IBC diagnosis is based on a finding of cancer cells in the lymph vessels in the skin of the breast, sometimes it is missed until the pathology report at the time of surgery. With IBC it is better to have chemo first; but as your doctor points out, you will end up with the same treatments as an IBC patient by the end of your treatment, so at this point, there is no point in second guessing the original diagnosis.
I think it is worth having the IBC aspect of your disease noted in your chart because this diagnosis could make a difference in your eligibility for certain clinical trials and/or disability payments.
i have went too the 2 times with the sores on my breast first there where only two now there are three . my breast feels very heavy and its just too umcomfortable too wear a bra. i am not sure what too do i have no insurance i am not working. and i just feel helpless. i have a daughter expected a baby in feb and i dont want too start any chem if it would hurt her or the baby. she has lost 4 already and she seems too be doing great with this pregancy. Can you tell me what it could be. your story seems so much like mine , i am 46 .
You mentioned in a recent question that you had had an abnormal mammogram, so some follow up tests should have been done like an ultrasound to see if there are cysts, or a biopsy if a lump showed. The sores are not typical of inflammatory breast cancer, but the swelling and heaviness can be symptoms of it. This link has suggestions for getting help when uninsured. If it turns out you need it, chemo for you will not affect your daughter or her baby.
The first step I think would to be to find out more about what is causing those sores. Getting them healed might get rid of the swelling and pain. If the sores and swelling go away, you probably don't have breast cancer. If the doctor didn't have any suggestions for what would help the sores, you could try home remedies like warm compresses and an antibiotic ointment. If that doesn't help in two or three days, then you should either go back to the first doctor or go to a new one.
the second time i went the doctor said there was nothing too do a biopsy on the doctor just did not want too treat me is the way it seemed too me. I cannot afford too go to another doctor. and i have tryed all you mention . in 3 days my left breast is so sore and enlarged i hate too wear a shirt the pain is that bad. thank you for your advice
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A painful, but wonderful story. Thank you for sharing it.