Well, actually, it's all over my body, but the new stuff is in my head.
I've been having mild left leg weakness and my leg has buckled on me a few times. My oncologist ordered a brain MRI, as well as a full spine MRI to look at possible neurological reasons for this weakness and to look at the nerves of my spine that could be causing it as well. To be honest, I didn't want the scan ... I wanted to wait until the end of July, but my oncologist said that if there was anything happening in my brain, she wanted to be able to respond quickly to it.
We were all surprised to learn that I have eight tumors in the lining of my brain. These are known as leptomeningeal metastases (lep mets), but are also referred to as brain mets, even though they aren't actually in the brain.
All eight of the tumors are small. They could explain the leg weakness, as well as a few other things that I never associated as symptoms of brain mets. I've had difficulty concentrating and excessive sleepiness, but who knows what causes what?
I have been referred to neuro-radiology for consideration for gamma knife radiation treatment. The gamma knife is specifically designed for brain disorders. This is what the University of California San Francisco (UCSF) medical center (where I'm being treated) has to say:
"Gamma Knife radiosurgery is a sophisticated radiation therapy technique that precisely delivers a single, finely focused, high dose of radiation to well-defined, small targets in the brain. It is especially effective for treating tumors, epilepsy, trigeminal neuralgia, and arteriovenous malformations. Since UCSF adopted the Gamma Knife in 1991, it has greatly improved the management of patients with these disorders. The procedure entails very little discomfort and patients recuperate within a few hours. UCSF Medical Center and UCSF Children's Hospital were the first Gamma Knife centers in northern California and operate today with the latest model, the Perfexion® Gamma Knife. The UCSF Gamma Knife team has over 20 years of experience with radiosurgery and has treated over 3,600 patients to date. In 2011, we acquired the Extend Frame for the Gamma Knife that enables fractionated treatments for larger lesions or those in more sensitive locations."
Gamma Knife has minimal side effects and is a single day procedure. It can be done while systemic (whole body) treatment is happening. In addition to the Gamma Knife procedure, I'll most likely be switching systemic treatment to avoid new brain tumors from developing. The options for treatments that cross the blood brain barrier (BBB) are limited.
I will most likely have a flurry of appointments next week to get things lined up. I must admit a degree of fear ... I've always been afraid of brain mets in that I don't I really don't want to "lose my mind!" However, all of this is beyond my control.
It reminds me of the Proverb, "Trust in the Lord with all your heart and lean not on your own understanding." I guess that's one way of saying that I don't have to understand everything.
As far as the rest of my body is concerned, I still have bony mets in every single vertabra (some with more than one tumor) with lots of bone marrow replacement with disease in the lower spine, tumors in both sides of my hip, a tumor in my left hip socket, a tumor at the top of my right femur, tumors in several ribs, in my sternum, in my right shoulder blade, at the top of my skull and over 30 tumors in my liver. I have over 75 breast cancer tumors in my body. (Remember, I do not have bone cancer. I do not have liver cancer and I do not have brain cancer. I have metastatic breast cancer.)
As one friend said, it's hard to explain how and why I'm doing as well as I'm doing. Quite frankly, when one reads the reports, it very obvious that I'm quite sick. However, I'm not in pain and I'm still known as the "energizer bunny." I'm very grateful. I get to live each day and if not completely with joy, than at least with gratitude.
As always, thank you for your love and support. This isn't over ... just a new chapter in the life of a metastatic breast cancer patient.
I've been having mild left leg weakness and my leg has buckled on me a few times. My oncologist ordered a brain MRI, as well as a full spine MRI to look at possible neurological reasons for this weakness and to look at the nerves of my spine that could be causing it as well. To be honest, I didn't want the scan ... I wanted to wait until the end of July, but my oncologist said that if there was anything happening in my brain, she wanted to be able to respond quickly to it.
We were all surprised to learn that I have eight tumors in the lining of my brain. These are known as leptomeningeal metastases (lep mets), but are also referred to as brain mets, even though they aren't actually in the brain.
All eight of the tumors are small. They could explain the leg weakness, as well as a few other things that I never associated as symptoms of brain mets. I've had difficulty concentrating and excessive sleepiness, but who knows what causes what?
I have been referred to neuro-radiology for consideration for gamma knife radiation treatment. The gamma knife is specifically designed for brain disorders. This is what the University of California San Francisco (UCSF) medical center (where I'm being treated) has to say:
"Gamma Knife radiosurgery is a sophisticated radiation therapy technique that precisely delivers a single, finely focused, high dose of radiation to well-defined, small targets in the brain. It is especially effective for treating tumors, epilepsy, trigeminal neuralgia, and arteriovenous malformations. Since UCSF adopted the Gamma Knife in 1991, it has greatly improved the management of patients with these disorders. The procedure entails very little discomfort and patients recuperate within a few hours. UCSF Medical Center and UCSF Children's Hospital were the first Gamma Knife centers in northern California and operate today with the latest model, the Perfexion® Gamma Knife. The UCSF Gamma Knife team has over 20 years of experience with radiosurgery and has treated over 3,600 patients to date. In 2011, we acquired the Extend Frame for the Gamma Knife that enables fractionated treatments for larger lesions or those in more sensitive locations."
Gamma Knife has minimal side effects and is a single day procedure. It can be done while systemic (whole body) treatment is happening. In addition to the Gamma Knife procedure, I'll most likely be switching systemic treatment to avoid new brain tumors from developing. The options for treatments that cross the blood brain barrier (BBB) are limited.
I will most likely have a flurry of appointments next week to get things lined up. I must admit a degree of fear ... I've always been afraid of brain mets in that I don't I really don't want to "lose my mind!" However, all of this is beyond my control.
It reminds me of the Proverb, "Trust in the Lord with all your heart and lean not on your own understanding." I guess that's one way of saying that I don't have to understand everything.
As far as the rest of my body is concerned, I still have bony mets in every single vertabra (some with more than one tumor) with lots of bone marrow replacement with disease in the lower spine, tumors in both sides of my hip, a tumor in my left hip socket, a tumor at the top of my right femur, tumors in several ribs, in my sternum, in my right shoulder blade, at the top of my skull and over 30 tumors in my liver. I have over 75 breast cancer tumors in my body. (Remember, I do not have bone cancer. I do not have liver cancer and I do not have brain cancer. I have metastatic breast cancer.)
As one friend said, it's hard to explain how and why I'm doing as well as I'm doing. Quite frankly, when one reads the reports, it very obvious that I'm quite sick. However, I'm not in pain and I'm still known as the "energizer bunny." I'm very grateful. I get to live each day and if not completely with joy, than at least with gratitude.
As always, thank you for your love and support. This isn't over ... just a new chapter in the life of a metastatic breast cancer patient.
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