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!

February 8, 2011

Mastectomy-do you really know what that means because I didn't?

When I was told I needed a bi-lateral mastectomy, I thought to myself what exactly does he remove? The nipple, the skin, muscle, tissue, what else? Well, depends...
Simple mastectomy-This is what I am having done: the entire breast tissue is removed, but axillary contents are undisturbed. Sometimes the "sentinel lymph node"--that is, the first axillary lymph node that the metastasizing cancer cells would be expected to drain into—is removed. For more information on what your lymph nodes purpose is, click on this link, lymph node. I will have lymph nodes removed from my left side-where my current breast cancer is. A question I asked was, how do you determine which lymph nodes are the main drains since you have between 600-700 lymph nodes in your body? Answer, a dye is injected and the Dr. watches which lymph nodes absorbs this. This is how they determine the first axillary lymphs. During the mastectomy procedure a pathologist will examine my lymph nodes for cancer traces. If the  lymph nodes that are removed come up positive then I will have a modified radical mastectomy. My future treatments will also change, more then likely, chemo is in my future. At this point, my HD MRI confirmed there was nothing in my lymph nodes however, it is not until they are removed and the pathologist does his tests will this be confirmed.  If my lymph node comes up negative, I will have yet another test called an Oncotype DXThe Oncotype DX test is a diagnostic test that can help women with some types of breast cancer learn more about the biological activity of their specific tumor.  It can help indicate how likely it is that a woman’s cancer may return in the future to different areas of her body, or called distant recurrence. A Recurrence Score result is determined, which is a score between 0 and 100 that correlates with the likelihood of a woman’s chances of having her cancer return, and the likelihood that she will benefit from adding chemotherapy to her hormonal therapy if the score is higher. This is yet another way to determine your odds and to help you chose your treatment path for a cancer free future. 
Modified radical mastectomy: The entire breast tissue is removed along with the axillary contents (fatty tissue and lymph nodes). In contrast to a radical mastectomy, the pectoral muscles are spared. What becomes a greater concern since more lymph nodes are removed is lymphedema. Lymphedema is where the lymph cannot drain from an affected area. What is Lymph you ask, I was wondering that too!? Simplistic definition is the waste your body doesn't use that is left in your blood. This waste travels thru your lumphphatic (lymph nodes) system being filtered until it finally becomes plasma and filters back into your blood stream. If there are lymph nodes that are missing, your body is not able to filter the waste and the result is swelling of that area. There are 600-700 lymph nodes in your body that make up your system however there are some lymph nodes that are of more importance. 


Radical mastectomy: This procedure involves removing the entire breast, the axillary lymph nodes, and the pectoralis major and minor muscles behind the breast. This procedure is more disfiguring than a modified radical mastectomy and provides no survival benefit for most tumors. This operation is now reserved for tumors involving the pectoralis major muscle or recurrent breast cancer involving the chest wall. My breast cancer is not located near the chest wall so this is not needed for me.


Skin-sparing mastectomy: In this surgery, the breast tissue is removed through a conservative incision made around the areola (the dark part surrounding the nipple). The increased amount of skin preserved is used for  breast reconstruction procedures. Patients with cancers that involve the skin, such as inflammatory cancer, are not candidates for skin-sparing mastectomy. This skin saving procedure will be done with me. A concern however is that I have had radiation on my right side or my prior breast cancer. My skin has become scarred and is not as flexible as non radiated skin. This may make it more difficult to stretch. I also have a scar from my lumpetomy that will need to be removed...the scare and surrounding skin could have cancer cells lurking within the scar/skin area. I never even thought of that until one of the Dr.'s mentioned it.


Nipple-sparing/subcutaneous mastectomy: Breast tissue is removed, but the nipple-areola area is preserved.  This is not an option for me since my breast cancer is in the lobular area of the breast, this feeds to the nipple. 
All these treatment suggestions were made between my breast Dr. and my reconstruction Dr. They both will be working closely together, approximately 6 hours in surgery. Approx 3 hours for the mastectomy and 3 hours for reconstruction. At this point I may opt to have an implant used for my reconstruction but the DIEP flap reconstruction could be an option (possibly 12 hours of surgery for this option). Either way, I want to be whole again as soon as possible. It's not that I'm Sports Illustrated Swim Suit material or anything but my breasts are part of me, part of my appearance, and quite simply something that I consider sexy about me that I share with my husband. You know that saying, "you can't live with em and you can't live without em"....well,  I'll be without them, kinda.
How do I feel about all this? Well, I have a memory from my early 20's  looking at  black and white photos in Vanity Fair. It was of women who had had mastectomy's. Some of the women had tattoos of flower vines placed over their scars. Other photos were simply just twisted pieces of skin where their breasts had been. Quite honestly, the photos scared me. So much so, I still remember the images today in my mid 40's. I thought back to my past when I was looking at the pics and thinking, how horrible.  I hope I never have to deal with something like that. I thought that won't happen to me, well I was wrong. 


So, now the next step is reconstruction consultation. More decisions and more education coming at me. One thing I know is that my outcome will be different then the photos I remember, who knows, maybe a tattoo might be in my future also?

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