Well, I'm numb. That's a fact. Met with the oncologist. What did I get out of this meeting, simply fear. Somehow it just did not feel like his suggestions were directly to me, for me but rather because you fit in this category you should do this. Being in a grey area with some of this stuff makes me wonder. You think you would automatically go with the most aggressive treatment just to be sure to get the cancer but the side effects could proof to be greater. Ya, these guys have all the fancy educations but do they really look at each individual case for more then the 15 minutes they stand outside your door reading the file before they walk in to see you? It's not reassuring when the doc says, I don't know why they scheduled you for 15 min when this should have been an hour appt...ya gee doc, I don't know why either? So, I'm going to head back in to politely demand more time. This is my life and I'm not going for a 15 min consult to lead me.
His odds for me are not what I like. Some would say very good if not excellent if I followed the most aggressive path, 83% chance in 10 years of not having a reoccurrence of cancer in my body. As the time moves forward, the percentage drops. If I don't follow all prescribed treatments the percentage can go as low as 50%. just downright scary. That 83% is not a good enough number for me so I continue searching for my answers. The doc said we have approx 3 months before not starting chemotherapy will begin to have a detrimental effect of my outcome. So the clock is ticking. I will be doing a CAT scan to see if there is cancer elsewhere in my body, so hoping that is negative. My case goes before the tumor board but then again, when my oncologist says, this is pretty much the treatment path since I'm the smartest one on the board, doesn't add to my feelings of reassurance. We have been in contact with UCSF and will meet with them as well. I will be calling to make sure plenty of time is scheduled for our questions.
As for reconstruction doc, tubes come out Friday.. I've been told I need to sit and do nothing for the next 24/36 hours. The draining has to slow down. Will be relieved to get them out. The nurse removed the bandages. I looked down but only saw black surgical incisions so I looked up and have kinda vowed not to look down again. I'm not looking forward to my first shower where I see myself in the mirror.
My feelings right now? Scared and filled with doubt as to the right choice. I still can't believe this is happening to me...maybe this is just the path people go down during this time, I don't know. I do know I need help. I will be contacting a support group.
Update: maybe it just takes time to absorb everything but doing better. Taken control of my healthcare again. Called UCSF to speak to my breast Dr. about my concerns. Called Dr. Gottlieb and will be having an appt to really go over results and what it means to my future. I again expressed my uncertainty of what my huge parameters mean to me and treatment going forward.
Bummer, the drains might have to stay in until Monday. The doc is out of town for the weekend and did not want to leave me without help if something went wrong while he was gone. So maybe tomorrow but most likely not.
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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