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!

March 2, 2011

My 2 week window and my 6 month chocolate bar.

I'm in my 2 week window of surgery. The last time I was aware of a 2 week window was when I was pregnant! In this 2 week time period before my surgery I need to watch what I consume since some vitamins and foods ( Vitamin E, Advil, Ginko for a few) can cause problems ranging from blood thinning to who knows what else.   The 2 week time period after the surgery, I need to use caution moving around. I am not able to drive and will need to rely on others.

Yesterday I had my final Dr.'s appt. with Dr. Gottlieb. Next week I meet with Dr. Wotowic. I will have to be preadmitted to San Ramon Regional where they will do a number of blood tests and whatever else they do to get me ready for the surgery. In my appt with Dr. Gottlieb he covered exactly what to expect before, during, and after the surgery. Dr. Wotowic will meet with me the day before surgery and use his magic marker to draw on me marking the areas to help him reconstruct.

We had hoped to have been able to get into UCSF for our 2nd opinion but it is proving to be more difficult then we thought. At first the consignor service was a great concept having someone walk me thru this 2nd opinion process to make sure my files and tissue were brought to the right area and to help me move forward in this process. Our goals were simple, a confirmation of the tissue samples, confirmation of the Dr.'s diagnosis, and finally if there was something UCSF could give us insight into what was causing cancer in me and if there are any more tests we should have ordered in addition to what I have had done. The consignor person and I had a hard time catching each other by message.  Once more info was collected she referred me to another person who was to try and schedule my appt with a Dr. What we discovered was a communication breakdown. As my file was  passed down the line, not all the verbal information was given. I then received another email from someone else in the breast center at UCSF offering information videos on various types of breast cancer and treatment options. They made it clear they did not have access to my medical files so their call was simply a follow thru procedure they do with new patients. On top on that, I received another email asking for my medical background but I have no idea what office  or who this orginated with.
A couple days ago the 2nd contact person told me my tissue samples will not be sent to the pathologist unless I have been seen by a Dr. at UCSF first. This was never told to me. A confirmation of the samples was one of our goals. It also was not made clear to the 2nd contact person, that I am coming for a 2nd opinion.  Maybe this a reaffirmation that my local hospital might have better control over my files then a huge hospital and the various levels I need to go thru to get an answer. Needless to say, I'm hoping our meeting on March 7th will provide some new answers and confirmation of the diagnosis. UCSF offers a service that I am going to take advantage of. You can ask to have an observer, usually an intern who will talk with you before the meeting and type up questions I have. They will meet with me and the Dr. and keep notes as well as record our conversation. This person is there to help me keep clear and concise records of what was said to help me after the appt, keep the info correct. I think this is a great idea since I usually write medical terms down by their sound then I can't find even the slightest match when I look it up later!

So in my appt with Dr. Gottlieb he confirmed my decision, bilateral mastectomy. He mentioned the time to check in (6:30am/surgery 7:30am). No food or drink after midnight. He went into more detail of how the surgery will be performed. He will make an horizontal incision line across each breast and around the aerola and nipple. He will remove the aerola and nipple. He then explained there are 4 layers he is working with; skin, fat tissue, breast tissue, muscle tissue liner. He explained he will separate the fat tissue from the breast tissue-kinda like separating 2 slices of sandwich meet apart. As he separates, he will will be cauterizing the veins to minimize the bleeding. He explained that if he finds the right separation point the 2 tissues separate rather easily-lets hope he finds that quickly. He will remove all the breast tissue, aerola, and nipple. He will also remove a thin layer of tissue that covers my pec muscle. He explained it is similar looking to the white paper thin layer you see on pieces of meat. Again another area that cancer cells could hide.
I had asked about my scar from my lumpectomy. It possibly will be removed mainly for aesthetic reasons. Because I have no cancer on the right side, there is no possibly of cancer cells in my tissue, however people who have been diagnosed should ask about scare removal.
So, all that will be left is my skin (like an empty pocket) and this fat layer. As I explained he will also be taking lymph nodes and will be testing them for cancerous cells. If it becomes positive he will take a few more lymph nodes beyond the primary lymph nodes. He will not take all the lymph nodes out in my arm pit area like they used to do.
During the surgery I will have compression "socks" around my legs. This is to keep the blood circulating and lessen the risk of blood clotting since I will be out for about 6 hours during this surgery. I also will have begun taking antibiotics to lessen my chance of infection. I will have 2 types of antibiotics, one is a regular one they use and another one that is used for people who may have or been exposed to MRSA . After our trip last summer both Brock and Maren contracted this staph infection. MRSA is resistant to antibiotics but luckily, they responded well but the entire family had to have antibiotic soap downs with the orange liquid that you rub on wounds for over a week and we had to take antibiotic pills too! So, this is all precautionary that the Dr. has ordered this additional drug for me. I will be outfitted with some tubes that have drain vessels that will come out from each side of me. These will be in for at least a week maybe more.

After Dr. Gottlieb is done, it is Dr. Wotiwic's turn for reconstruction. I meet with him next week for the magic marker session.

So as I head to the grocery store I am more aware of the expiration dates on the things I am buying. I used to do that when I was pregnant. I would think I will have my new baby by the time this carton of milk expires-yea! Now I look at the expiration dates on items and the date is at or beyond my surgery,  a mixed sense of dread and relief come over me. I am ready to get this over with and move on.

The other day I purchased a chocolate bar that had an expiration date of 6 months from now. I'm saving it so on the expiration date, I will open it and savor it since it will mean I pasted my 6 month mark. Then I will have to find something again that expires after 6 months and start over, waiting. I think more then likely it will be chocolate because I can always wait for chocolate.

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