Keep me company as I travel thru my journey facing breast cancer again.

Why would anyone want to read about someone else's problem when you have plenty of your own? Maybe one day a loved one, a friend, or you will be diagnosed with breast cancer. My blog might offer insite into cancer resources, thoughts, questions to ask, or guidance in helping you deal with this disease. These are my experiences and suggestions. Every breast cancer is different. If you are touched by breast cancer, be sure to consult your Dr. for direction in treatment.

I equate my blog to the emergency evacuation instruction the flight attendants do before you take off on an airplane. Nobody pays attention to them but when your plane is about to crash you think, "sh*t, why didn't I pay more attention to them? Which color cord do I pull first again?" We have so many things going on in our lives that one more thing to dwell on that doesn't apply to us right now may not be important but when it does, we wish we would have paid attention.

My blog is something you might read a couple times or maybe follow. Hopefully you gain some knowledge about breast cancer, in particular, Invasive Lobular Carcinoma (ILC). It is the 2nd most common type of invasive breast cancer however it only accounts for approx. 10% of all invasive breast cancers. It is the silent breast cancer. It is generally not detected with a mammo but rather an ultrasound. Invasive Lobular Carcinoma (ILC) is what I have been diagnosed with. My suggestion to every woman who is of mammo age insist on an ultrasound with your mammos.
UPDATE 3/2011
I have had my bilaterial mastectomy and I am recovering. ILC is a sneaky cancer as I said above. My various Dr.'s here and at UCSF confirmed the size of my tumor should be between 2.5cm-3.5cm with possibilty but not most likely, 7cm. After my surgery, my tumor was confirmed to be 11cm. My Dr.'s are very knowledgeable and are on top of things. This is simply the truth about ILC. I had mammos every 6 months, ultra sounds, and MRI's. With all of these, it was not picked up until 1/2011. The good news, if you can call it that, only 1 sentinel node out of 2 has micromastic findings and 5 aux. nodes were negative.

Be sure to start my adventure from the blog history on the right. I have tried to bold points to make it easier to extract the important information. If there is anything you get out of this blog, refer to my Dr.'s listed below if you know someone who has been diagnosed with breast cancer in the East Bay. These Dr.'s; Dr. Gottlieb, Dr. Wotowic, and Dr. Sherman are my 3 musketeers....all for 1 and 1 for all!

April 19, 2011

latestmedical.com A short cut down the path of breast cancer information

During this journey of mine I have found there is a path women like me follow. Your diagnosed. Your in shock. Your scared beyond words. You become empowered to find out everything you can.
The information you find can lead you to various websites from cancer forums, to research findings, to obscure health/meditate pages, and to people's blogs. During my journey I have discovered other women follow the same path searching for information. You type into google your type of breast cancer. As you find out more information about the type of breast cancer you have, you add things to your search which leads you to more detailed information.
What are you searching for? Someone like you. You want to find out what they did, what drugs they took, what treatment options they went for, and ultimately if their still alive. My darkest days was the week after my double mastectomy when I received the results from the pathology report. My tumor was 11cm, much larger then my local Dr. and UCSF had anticipated. I had micro micrometastatic cells in one sentinel lymph node determined through immunochemistry and 4 other aux. nodes were clear. I wanted to find someone like me who can answer questions like: So what does this all mean? Is it a death sentence having a huge tumor? Did the micrometastatic cells really mean lymph node involvement? Is chemo in my game plan now? These were all questions I asked my Dr. and asked my 2nd opinion Dr. but I wanted to find "real" people who had experienced it.
My searching brought me to various websites. My worst day of searching was when I found someone who only had one matching characteristic like mine.  She had passed away 2 weeks prior. Her blog had a candle burning in memory of her. I literally lost it. Was this person like me with the same type of cancer? Not even close. There was one characteristic that matched my cancer, that was it. During my search and postings on forums, I did find someone like me in every respect including age. Her treatment option was to do nothing. No Chemo, No hormone treatments, No radiation. All she did was change her diet, exercise, and meditate. She had already passed her 3 year mark of nonreoccurance. Was I going to follow her lead. No, but it was someone I did want to follow to see what happens to her and her radical approach to our breast cancer.
I also found someone kinda like me. She did not have the same type of cancer as me but when I read her blog, she expressed the same thoughts and concerns as me. She was my age and was about 2 months ahead in dealing with her mastectomy and finally chemo. It was reassuring to read about someone who had made it thru ahead of me.  I also was contacted my a woman who had read one of my questions/concerns in a forum where I expressed my concerns about having a double mastectomy. She felt the same way as I did weeks prior. I had already worked my way through this part of my journey but she was just starting and searching for someone like her and she found me.
I have tried to share with my friends what I have found out about my breast cancer hoping to educate and help someone who might end up on the same path as me. During one of the girl sessions one of my friends shared with another friend what was happening with me. This friend contacted me because she is working for a company that literally launched a breast cancer information website that day she was told about me! It is called Latest Medical. The purpose of the website was to help guide women like me to information that was tailored to fit me. The website allows me to put in my parameters on my breast cancer and then it creates a search of their "files" that apply to me. This helps weed out the websites that may not apply directly to me. My girlfriend said all the websites that the person is referred to are all legit websites, either research outcomes  or general information. Her job is to find the data and filter it for the website. She spends her day reading the latest research papers, trials, or information websites on various drugs or screening applications. She then categorizes it for their search engine. There is a fee for this feature but you can still just search the website for general information for free.
Will it stop women from searching for other women like themselves? Probably not but it will just be a short cut to these women to find out more information about their breast cancer. I have already used it in my search for chemo information. I will again search when I start radiation. My greatest suggestion to the website that I mentioned to my girlfriend, is to create a forum that allows women with the same parameters to communicate to each other. That's all what we want is find someone like ourselves to help guide us down the path. That path may divide and take us to a cancer free future or a future of managing our cancer through our life but having someone else who is experiencing it with you helps.

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