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New and want to ask what I should ask

seeknpeace
Posts: 262
Joined: Jan 2004

January of 2004 I was diagnosed with breast cancer and 2-4-04 I had a bilateral mastectomy. They did a head scan and noted some activity, I forget how they put it.

I had an MRI recently, due to some symtoms that medications were not curing, and the area that they had noted had grown so they say that I have a "lesion" in my mid brain (brain stem). This is usually only seen in children. It is not operable because of being in the stem. What I can read says that children survive this only 18 mos as an average. My surgeon was sorta blase about this. The lesion or tumor or whatever it is is not big but I am losing my hearing. Both ears. I had already been to an ENT to be sure that I had no ear problems, that ear drums were working, intact, no infections, water, etc. All was fine structurely, but they did check my hearing and confirmed the loss, which has gotten worse.

The surgeon said the location of this lesion/tumor would be the cause. There is a high pitched sound in both ears all the time, that is getting worse. Some days I feel like I will lose my mind. Add to that that there are lesions on the rest of my brain indicative of MS. So, on the 16th I will have the evoked potentials testing and then see the neurologist to find out the results.

When I was diagnosed with the BC, I had to insist on a biopsy and was treated like a head case for doing so. And, then I had very aggressive cancer. But, no spread. This is not a metastases, this is of it's own origin.

Here is my concern. It was there in 2004. It is supposed to be slow growing. So the neurosurgeon says, let's do an MRI in a year. Well, something happened almost overnight to take my hearing away. I fear that something has made it change, something has caused it to start growing, that it is or has been a slow growing thing but it has begun to change.

Is this possible? What do I ask? I am so afraid, I cannot breathe some days. I have been out of work since last July. I came out for mental reasons, and now we have found all this. I am fighting for my disability that I paid for from my company and waiting for a dx. I am 55 and this has really been a tough go. Closed a company and had to go back into the corporate world at 52, scared and unsure, and it has been bumpy.

Thank you for any info you can give me. I have found this site better than any other for support and help all through the BC. I do not even know if this is malignant, and neither does he, the neurosurgeon. I am not comfortable with a year.

Jan

janinemah's picture
janinemah
Posts: 53
Joined: Feb 2006

First...I'm so sorry for your pain and struggle...My mom has GBM IV..shes been fighting it for alittle over a year now. Its been very hard..
My advised to you is get a second opinion. waiting a year with such change seems risky to me...and it sounds like you are not comfortable with your Dr anyway. find one you feel you can trust.

hang in there,
Janine

jfrankenberg's picture
jfrankenberg
Posts: 2
Joined: Apr 2007

My prayers are with you! My son has a brain stem glioma, and we were told to notify the oncologist immediately if there was any symptoms of growth. My recommondation is that you demand an MRI to see if the lesion is growing and, if it is, insist on getting their treatment plan. Having a wait-and-see approach with a growing tumor is very dangerous, especially on the brain stem! Good luck!

IreneG
Posts: 3
Joined: Feb 2007

Hi Jan,
I'm new to the forum. This is only my second time on here. My name is Irene. I will turn 38 in December. I had a Medullarblastoma when I was almost 12 in Miami, FL. Back then (1980) the chemotherapy and radiation were only about 5 years in use. The MRI was called the NMR (Nuclear Magnetic Resonance ...or something like that). I was virtually a guinea pig for a lot of the stuff that went on, certainly for the MRI. I had chemotherapy and radiation for 5 years after my diagnosis due to a recurrance a year after surgery to remove a tumor the size of a baseball or softball. Some of the side effects of the treatment I had were mild (painless) like loss of balance and a little weakness, vomiting, but I also experienced a burning sensation in my legs. That was in the 80's.
I got married in 93 and my husband and I moved to Denver. I worked at the bank for a couple of years; at USWest for a year; at the library for a couple of years and then gave up. I demoted myself systematically all those years. The reason being either that my mental heath was deteriorating or that I just couldn't hold up the game any longer. I do know that the burning sensation and loss of balance were increasing. About a year later I finally applied for SSI, and was denied. I got a really fantastic lawyer who herself had recently had a brain tumor. It took me 2, almost 3 years, but I finally got it. Do NOT give up fighting for your disablity. After a couple of years of sitting back and waiting the government will cut you off. You really have to keep at it.
I found out from my new neurologist that what I am now experiencing is called: Brown's Sequard Syndrome. You can look it up on Google (copy and paste those words) if you think it might help you.
Tell you what. I have been living and dealing with side and after effects (so many of which I can't possibly list)of all this almost all of my life and I am still confused! lol
I really hope that anything I have said here can be of use to you. Feel free to email me anytime.
Good luck, and God bless.
Irene

IreneG
Posts: 3
Joined: Feb 2007

Hello again Jan,
I also wanted to say that I really think that you need to change your neurosureon/neurologist. There is something wrong when he/she cannot even tell you if what you have is malignant. My brother died last year (after fighting for 3 years)of esophageal cancer. But when he was first diagnosed his doctor told him that he couldn't tell him this or that about his condition. He got a second opinion and, although he was going to and fro treatments, those were very happy and fruitful years.

seof
Posts: 826
Joined: Jun 2007

I agree that you need a Doctor you can feel comfortable with, and you need to insist on getting all your needs met...most importantly feeling that you can get good information. For me, information is the best way to combat fear. The high pitched noise you hear sounds to me like it may be something akin to tinnitis. I do not know wether it can be treated, since the tumor seems the most likely cause, but a good Audiologist may be able to give you some coping skills. When you have found a Doctor you trust, you may ask about a good Audiologist (or you may want to seek one out on your own and not wait, if your insurance does not require a referrall).

My sister had several tumors in her brain in 2003, one was too close to the brainstem to be treated, but radiation on the others improved her ability to function dramatically after just one treatment. She still had some memory problems and things like finding her way around the hospital which she had been doing since 1998, but nothing too serious. She learned to compensate by keeping a planner and asking for directions more often, or taking a person with her. I am sure there are Doctors around you who know the answers and know how to communicate them to their patients. Maybe you can find a local ACS and see if you can talk to other patients for referrals. I am pleased with my oncologist now, but I had to adjust to his somewhat "scholarly" bedside manner and learn to keep on asking till he understood what I wanted to know. He is among the greats in the field, but his explanations can be a bit abrupt. I have learned to keep at it till I understand what he is saying, and he is learning to be more tolerant of my persistence.

Keep on keepin' on. seof

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