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Inflammatory Breast Cancer

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Subject: Inflammatory Breast Cancer
Date: 05/20/2005
My Mother-in-love, Dian, was diagnosed in August of 2004 with Inflammatory Breast Cancer or IBC. It is the rarest breast cancer, only occuring in about 3% of all cases, but it is also the most aggresive form. The doctors usually treat the first symptoms of IBC with antibiotics believe it or not. Typically IBC starts as a red, swollen and sometimes painful spot on a breast that starts turning dark red, sometimes almost black, the skin tissue can start to look pock marked like an orange skin and the nipple may invert. Many doctors believe that it is a skin infection and thus treat with antibiotics. I have read instances where some women have been on them for as long as 6 months with the doctor changing to different version because the "infection" is not responding. Dian was put on antibiotics for about 1 1/2 weeks and her doctor realized after there was no response to them that he was dealing with something different than an infection. Her mammogram had come back fine as well as an ultrasound of the area. But IBC is deceptive, as it typically grows in in layers, or sheets, or strings and not as a solid lump or mass. Because of this it is easily missed and you are given the all clear sign. Dian's doctor had two needle biopsies done that came back as suspicious and then did a surgical biopsy. It came back as IBC. They ran MRI's, bone scans and CAT scans and it was determined that it had not spread. She started on 8 rounds of intense chemo - they do the chemo FIRST to try and shrink and get some form of "control" before performing a mastectomy. This type of cancer loves to metastesize (spread) especially when messed with. So she began her chemo and finished up in January of this year. In February she underwent a double mastectomy and then started in on radiation. During the radiation she began to experience headaches and dizziness, so at the beginning of May she underwent another MRI - the results were about a dozen spots in her brain, to which radiation was immediately started. This led to another MRI, spinal tap, and CAT scan. Not good, as the cancer has spread to her bones and body. The doctors have told her to live out her remaining days in peace as this cancer is chemo resistant because it spread during treatment. We have decided to move closer to be with her as we have 6 children who need to be with her and she needs them as well. It will be a 2,000 mile treck, but well worth it. What I have to say is this - Everybody's body responds differently to cancer and treatment. Dian is one of the healthiest people I know, she walks daily, eats well, takes vitamins and Juice Plus, is very active in her community, is on the school board, works for a radio station selling advertisement, works with Habitat for Hummanity and is very active in her church. She is the last person I would expect to have been diagnosed with this as there is no family history. But she was. She has tried progesterone, and other homeopathic remedies but none have worked. I have read where others have said to question radiation, question chemo, question everything, and that is good but please don't discount them either. Doctors go to school for a long time to learn about cause and effect and treatment. They do what they know to be the best. They are trying - and no I am not a doctor, I just get tired of people who have not spent a day in medical school diagnosing others they have not met. Try whatever you feel led to but remember that each person is unique and each cancer is unique in how it responds in an individual. What workd for some may not work for others. Dian had very little sickness during chemo and worked all the way through and is still working today! Actually it is very hard to even tell that she is so ill because she is still so active and working full time, giving speeches and is an honorary grand marshall in an upcoming relay for life. A side note to this is - GET INSURANCE! Dian and her husband had nothing except for a supplemental insurance that paid about $10,000 total. With each chemo treatment running around $9,000, MRI's, Bone Scans, CAT scans, surgery, radiation for 8 weeks.... I can only imagine that the bills are easily over $200,000. The hospital has worked with them to lower some of the bills and her community had a fundraiser for her that raised about $30,000, which is great, but there is still a massive expense. If you are going through any type of cancer the last thing you need to be worrying about is money. You need all of your strength focused on recovery. I wish you all health, happiness and remission. God bless you.
Subject: Something i Forgot to Say
Date: 05/20/2005
There are many, many survivors of IBC. Although my mother-in-love's story does not have a happy diagnosis, there are many others who do have a good outcome.
Subject: Re: Ibc
Date: 06/02/2005
Hi Heidi,

I always look for the IBC warriors, as I am one myself, and also about the same time frame as your MIL. I so appreciate you educating others by giving your great description of the disease--Bravo!

Now, what concerns me is that you didn't mention her Her2neu status. This is so important, because if she is positive (get it confirmed by a FISH test, the superior testing done from her tissue slides from her surgery.) she is a great candidate for Herceptin. Check it out at http://www.herceptin.com.

Do not give up on this battle! I cannot tell you how many Stage IV patients that I have seen go in remission from IBC. Another great site is http://www.ibcresearch.org.

And whew! Lastly there are always clinical trials that she can get involved in. The primo hospital for research is MD Anderson in Houston, TX.

Feel free to contact me at: ptahiti@wavelinx.net
if you have questions or I can be of further assitance.

Love, and Light,

Pam
Subject: Ibc
Date: 07/20/2005
I just wanted to update that on July 14, 2005, exactly 1 year and 1 day from the Doctor's telling Dian that her breast was suspicious looking, she passed away. She fought the good fight and finished her race. A crown of righteousness is laid up for her in Heaven. She went home to the arms of Jesus with all of her children, their spouses and her spouse standing around her bed. Her Pastor was present and read a prayer of release as she slipped the bonds of earth into eternity. I want to tell anyone else going through this that one of the best things to help get through this was Hospice. What a blessing to have "our" own nurse tell us what and when to expect as death came upon Dian. I also have to say that how anyone can go through this without knowing Jesus Christ as their personal Lord and Savior is beyond me. Only the knowledge by her ENTIRE family support system that she would be in Heaven and we would be with her some day, made us have hope and peace. We know she is worshiping before the throne of God and all of her pain and sorrows have been traded in for the Joy of the Lord. I just thank God that we had the opportunity to say good bye and be with her in her final month of life.
To all of you struggling with IBC ~ stay strong and let's get the word out about this monster which rages in bodies that it should not be in!
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