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Scan results ... it's all in my head!

6/3/2016

7 Comments

 
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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.
7 Comments
Alicia Lovens
6/3/2016 06:12:55 pm

I simply can't believe what BC is doing to you!!!!!! I feel guilty that chemo and radiation appears to have stopped my BC. Sending thoughts of strength as you deal with the next scoop of crap being thrown at you. ~~~alicia~~~

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Elizabeth Parker Knackstedt
6/3/2016 06:28:13 pm

You are the bravest person I know and I know no matter what God is with you!

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Kathi link
6/3/2016 07:03:15 pm

Yikes, Vickie! Anyone would be frightened to get this kind of news. The only thing I can say is that gamma knife radiation has done wonders with other friends of mine w these kinds of mets from MBC. And my understanding is that there are several options for bone mets, so hopefully, your onc will come up with one that will work well for you. I've had patients and friends who've kept their bone mets at bay for years. Hoping for the best, dear woman. xoxo, Kathi

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Karyn
6/3/2016 09:07:42 pm

All the very best with the new treatment! Hope to hear how well it goes! Xxxxx

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Victoria Lindgren
6/3/2016 11:38:15 pm

My dear Vickie, I have no words so I will just say that I am praying for you and your dear family. Always.

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Florence Mitchell
6/4/2016 04:14:46 pm

The hospital I work at has a similar system ("CyberKnife"), and many people keep coming back over and over to get their tumors "zapped." It seems to work very well and to be a comparatively easy process. I hope it works well for you.

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Christine Lee
6/5/2016 04:47:57 am

Vickie. such a great post. please send that Energizer bunny energy over here cos i need it!! xo

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    _I believe we all have a story. This blog records my story and how I've lived with breast cancer both as a primary disease and a terminal disease.  I believe this is all a part of God's story for my life. This blog unapologetically includes all areas of my life: my faith, my family and my advocacy for change in the metastatic breast cancer world.

      

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