17 years out - Now possible brain mets?
Hi everyone, this site was such a tremendous source of support during my previous experience, but I have not been here in quite a while. I thought I put this part of my life away. I was diagnosed at 38 with TNBC, Stage 2 in 2008. Underwent lumpectomy, chemo and radiation. My port tried to kill me… got infected and put me in the hospital with severe infection which just added to the drama and stress of the treatment. 😔
Now I'm 55 and like I said pretty much put this away. However, I had been having facial pain, neuralgia and headaches for the past many weeks, which I have been attributing to my sinuses (I am an allergy sufferer). Finally went to the doctor the other day and found out that my sinuses are clear and that I am actually suffering from a condition called Trigeminal Neuralgia, which is numbness and pain in your face, head and mouth caused by a compression on your trigeminal nerve which is located near your ear. I had never heard of this so in doing some research (yes, Dr Google!) I learned that this is usually caused by one of 3 things… a facial trauma (dental work, surgery mishap, etc.), multiple sclerosis or a tumor pressing on the nerve. Which as a cancer survivor all of you know "tumor" is not a word that you ever want to hear again. I also noticed that other things that I have been experiencing but not really thinking much of were on the list of symptoms of a possible brain tumor (persistent eye twitching, numbness down the side of my arm and leg and stabbing pain in my eye socket). I do have a pretty stressful job and life right now so I attributed most of my agony to stress.
So now I've gone and sent myself into a major spiral. Could this really be brain mets? Or am I being overreactive? I didn't really put the pieces together until a day or so ago and now I'm driving myself absolutely crazy since I've gone down the rabbit hole of life with brain mets. I see my doctor tomorrow and am asking for an mri (assuming he isn't already planning to do this).
Any words of wisdom on not only dealing with the not knowing but also your experiences? I really need to be talked off the ledge right now. I haven't told my husband or anyone else the extent of my concern. I appreciate you listening!
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jenm823 I’m having the same symptoms, did you have radiation?
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Hi @jenm823, and welcome to our Community! We are so very sorry for the reasons that bring you back here, but we're so glad you've trusted the support here enough to return. We're all here for you while you figure out what's going on!
One step at a time. Try not to jump to conclusions - we know it's easier said than done! But the more you know about what's going on, the better you'll start to feel. We hope the MRI gives you clarity — and is all clear!
Please keep us posted with what you find out. We're thinking of you!
—The Mods
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Jenm,
I am so sorry you find yourself in this worrying situation. Regardless of what anyone here experienced, it says little about what you’re experiencing. Although it’s tempting to think of bc as a single disease, it is far more complex than most imagine, and… there is no cure, just an absence of recurrence, even after decades (no one likes to talk about that).
While I hope that you can find emotional support here, the only way you can find out about your physical condition is by seeking medical advice and tx if needed. Not telling anyone doesn’t change the situation and I recently made the mistake of keeping my progression from some family members, which didn’t go well. Talk to your husband. So please make that appointment as knowing, one way or the other, is less stressful than not knowing and none of us are medical professionals. Take care
PS: Dr Google is actually a terrible diagnostician. He knows nothing about you and he can only speak in generalities. He is useful for general knowledge, but a diagnosis is a far more individualized thing.
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Hi @jenm823, I had trigeminal neuralgia caused by scar tissue from deep partial thickness burns, one of the many causes that does not show up on google. Tumors cause only 1% to 6% of cases. An MRI would be a good first step. If nothing obvious is found you should probably consult a neurologist or a pain clinic.
I ended out having laser surgery to cut the nerve. I have no feeling in part of my face but it is worth it not to have the pain and other side effects. There are many other less drastic treatments which are effective for other causes. You definitely need to determine the reason for the neuralgia to get relief. Good luck figuring this out.
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Thank you everyone for your feedback and compassion. I am always amazed at how non-judgmental and compassionate this site is to everyone. It's a beautiful site for sure!
@matty123 yes, I had a course of radiation in 2009… can't remember how many weeks though. I also did 6 weeks of AC and 12 weeks of taxotere, which was interrupted halfway through for a few months by my port infection. I also participated in a clinical trial for the drug Avastin, which ultimately caused me to permanently lose almost all of my sense of smell (go figure!).
@maggie15 thanks for the information. And I know google is not good, and I know not to take it as science or definite. But you know how you get sucked in. 🙄And I'm happy to hear the statistics. I think once I have the mri I'll be able to get that little tumor thought out of the back of my head and can then focus on what I'm going to do about the neuralgia.
Thank you again everyone… my well wishes for all of us!
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Hop as I write this that you're having a good meeting with your Dr. And things are being sorted out.
I have recently gone through a self-diagnosed brain tumor fright when I consulted Dr. Google about my increasingly persistent blurry and double vision.
I also had the sense to call my opthamalogist who saw me within a few hours of my panicked call, bless her. She diagnosed a severe level of dry eye syndrome as well as a large cataract in one eye. I also called my MO, who ordered a brain MRI which was clear, but the waiting period for those results was very difficult. If you don't feel you can share with those close to you yet, maybe ask for some emergency counseling from your cancer center? I have also learned to keep an active prescription for low dose anti-anxiety meds that I use for short periods and that helps me tremendously. We all suffer from this disease in so many ways that if I can "take the edge off" I'm all for it.
Please also keep us up to date. We care.
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