My apologies to how I ended my blog from yesterday. I am not in a hell hole. I am far from that. There are many others that are facing a much worse scenario then I am. I simply was overcome with frustration and disappointment. I have tested positive or negative in the tests that could offer the best outcome. I've worked my way thru this map very well but to have, finally at the end or near end I receive a test result that was so important and I tested positive (which is a bad thing) with ever the smallest possible trace of cancer. What's also upsetting is that now there is not a clear path of treatment. These test results, depending on the oncologist, can be considered positive or negative nodes. It is not black and white.
So, I've done my crying and I'm back on my journey to be an active participant in my cancer fight as anyone else who is fighting this disease should be.
So, yesterday I called UCSF to get moving with our 2nd opinion as to what next. I spoke directly with our Dr.'s nurse and gave her the details. She was what a person in this journey needs, confident and knowledgable with regard to what I am to do with UCSF. She agreed on all my accounts from yesterday; Invasive Lobular Carcinoma is tricky and it is not uncommon for the tumor to be much larger then the actual size first thought. 2nd I am in a grey zone for treatment options going forward because of the negative/positive node. What did she say to me that I greatly appreciated? This cancer is very curable. She also took the lead and said I want your Dr.'s contact so we can get your pathology report. She was familiar with Dr. Gottlieb and said many patients from the East Bay were pleased with his level of care and knowledge. Very reassuring.
Before UCSF begins, they want the tumor board from here to meet and the onco test results to come back as well which usually takes 2 weeks. So here we go again, waiting.
My stage of breast cancer has now changed as well. I was so upset during my call I forgot to ask. By reading all the definitions I think I am now Stage 3 breast cancer but until I speak to the Dr. I will not have a confirmation. Scary thought isn't it?
Recovery is going well. I had what i think is the drain tube end shift inside of me because now it is poking up under my breast on a nerve or bone. I've had to jump back on the heavy duty pain killers because it hurts so bad. I did find out that the drains in me actually wrap under my skin and create a U shape under my breast to collect the fluid...think French Drain. Whats really wierd is that the tubes just enter into my body from a hole on the side of my chest-freaky!My drainage is slowing down considerably so I am hoping on Monday when I go in to have the Dr. See what is causing this pain he will take them out. By jumping back on the heavy duty pain killers it has also ruined my chances of driving starting Monday. Frank goes back to work so my companion will not be here either.
I have heard from 2 friends who have gained knowledge from my blog about breast cancer. That is great to know! I am no Dr. But if someone can gain knowledge to make an informed decision or ask a pertinent question from what I have written, fantastic!
Again my apologies on my " hell hole". I'm kicking and fighting to get away from anything close to that.
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!
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