checking for brain metastases

[finster]

My mom had a brain MRI in October, but she hasn't been checked since then. I was dismayed that the doctor didn't schedule a test to re-check her brain when she had tests done at the end of December. I just feel it is so important to keep up on this since the cancer spreads to the brain so often with SCLC. Can you let me know what your experience has been with this?

Thanks.

[KatieB]

There was never an MRI of my dad's brain until he showed symptoms.

I can't debate why's in reference to the insurance companies or "standard medical practice procedures" but I will tell you that you need to remain proactive in getting or asking for her tests.

That being said, I don't know what, if any, significant difference would be in getting tested on a regular basis, every six months, once a year, every three months, can really make as compared to only being tested when symptoms present themselves. ? I haven't studied any research on this.

But it does make sense that if something is found earlier, it's easier to treat.

My dad's first MRI was negative, three months later he showed more symptoms, had another MRI and he had two brain mets.

I know that MRIs are not ordered routinely like X-rays, CT's or even PETs and usually are only ordered when a patient shows symptoms. While my dad had tests every three months, and x-rays every month while he was not actively in treatments, he never had an MRI.

If you are worried,please ask your mom to request another MRI.

[pritchie]

Melissa,

They never did a brain MRI on my Mom until she complained of headaches or

other symptoms. But the Onc did do one when I requested it be done.

I agree with Katie if you are worried maybe she should request one.

Pamela

[anniem]

Hello,

ABSOLUTELY have her brain checked as much as possible. I know that there is limited amount of radation they can give to the brain. But...in my mothers case, she was NED for 1.5 months, it came back in her brain & spine. She only lived 2 more months. MRI's are expensive and they are limited to how often they can give them. When it is your life or a loved one, money is not an object. You have to remain proactive in getting an MRI or the ONC may not bring it up. I know they do all they can, but it is better to know what is going on then to have it sneak up on you. SC is fast......you just have to try to stay faster. GL to you. God Bless!

[finster]

Can you tell me what kind of symptoms were present? My mom has mentioned vision changes, but I believe I have read that that can happen with chemo.

As I've also mentioned about my mom, she doesn't seem to want to know the specifics and has been in much better spirits since getting the report that the cancer is almost unnoticeable in her lung. That makes it difficult for me to talk to her about more tests. Also, she came out of the MRI in December crying. I guess being closed in really affected her. I know there are open MRI's, but I have no idea if they are available in southern Illinois.

Katie- I know what you're saying about the whole insurance thing and I know it has been discussed at length on this website. I just hope that her onc knows how often the cancer spreads to the brain with SCLC.

Thanks.

[KatieB]

Melissa,

My dad never spoke at length about his illness either. This is why I took it completely upon myself to research and ask the questions.

My dad was ok with it and let me handle things for him

You may need to have a discussion with your mom about how serious this illness is and the reality that if she doesn't stay on top the the cancer, her treatments and possible metastasis, that it is possible she could lose her battle. ANd let her know that you want to do everything in your power to not let that happen.

What I told my dad was this.

"YOU concentrate on your body, staying strong, getting thru the treatments, enjoying your life and living it the best that you can. You let ME worry about getting the tests, the treatments and the medical professionals. I mean, no one loves you or cares about your survival as much as we do. The doctors care, but they are busy, they have many patients and they are working off stats. and you are not a statistic. The best way to beat the cancer is to be proactive. It is better to be informed and educated and tested often and to stay on top of any new growth than it is to try to fight it once it knocks you off your feet."

He agreed to that, and together we did the best we could, but with our story, the cancer ultimately won in the end.

I am sure your moms doctor knows the growth rate for SCLC and the high chances of brain metastasis. Unfortunately, the stat's for SCLC are not great and in my personal opinion this is why some doctors do not work as hard or fight as hard for their sclc patients survival if they think they are just going to die anyway. We were lucky that we had some caring medical professionals. There are alot of them out there.

I also believe that you are treated with more respect when your physician knows that you are educated about the illness and that you plan to keep them on their toes with the information you have and your research.

And just so you know, Cindy RN, the moderator of this forum, is a THREE year extensive stage SCLC survivor. There are others and I've been told of a 7 year survivor as well. They are out there and survival IS very possible.

Tell your mom this and let her know that the key is being proactive and staying on top of things. This includes tests.

My dad's symptoms were blurry vision and dizzyness. He would sometimes get confused but of course that could have been from meds or radiation or residual effects of all teh chemo. I just told the doctor...these are his symptoms and I know it could be effects of the treatment, but I also know the high chances of brain metastasis, so please lets do an MRI just to be sure.

Good luck. I know how hard it can be. Please keep us updated on you and your mom.

[finster]

Katie- Thanks for your response. I am going through many of the things you went through. I do worry that the doctors aren't doing enough. Of course, my problem is that I am over two and a half hours away. I go down to visit often, and I have been to several of her appointments, but it is next to impossible to go to them all. There are several things I would like to discuss with the doctor, but all of them would really detract from the positive state of mind my mom seems to be in. This is getting a bit off track, but she keeps talking about things she wants to do when she's better, and I am just dying to tell her to seize the day. This may be all she has. She needs to stop waiting for the future and live life now. Of course, I hope she lives to be 100, but knowing what I know about SCLC, that is not very likely.

If it's okay, I think I will try to print your post to me and have her read it. Maybe it will hit home a little better.

Thanks again.

[KatieB]

Melissa,

When you talk to her tell her you don't want to detract against her positive state right now..she needs to remain positive to get thru her treatments successfully.

What you are saying can apply to each and everyone of us.

Seize the Day!!

Any one of us could leave home or work and be hit by a bus....what was it all for? Seize the Day is right. It's something we should all live by, but most of us take our days for granted. Your mom is in a cancer battle and wonderful as it will be when she is in remission and CURED, she still must consider the here and now, all the possibilities, and live life today.

P.S. as far as the D.r visits- If you can't call him and talk to him directly, you may consider a tape recorder. This was it will benefit everyone in that you can ask questions and bring up things your mom wouldn't normally ask, and you can learn what the doctor says and what he plans to do in terms of her treatment and care. Also, alot of patients carry tape recorders because alot of information is lost from the appointment to home, sometimes memory is affected and things don't get conveyed properly. My dad's doctor was very willing to do this, most of them are.

[Snowflake]

Melissa,

Your mother should live life to the fullest every day - cancer does not remove a person from the Random Beer Truck lottery.... Carpe diem!

I never had a brain MRI until I started having headaches, memory loss and gaining weight unexplainably... I doubt I will have another one unless there are possible "symptoms" - my PCP is hyper-sensitive about things that MIGHT be a cancer symptom, she is very on top of any situation and has a "better safe than sorry" attitude. I have non-small cell, different color of the same animal...

If you are having doubts, take her for a second or third opinion. Next time you go to the doctor with her, have her sign a release of information for you so that the doctor can talk to you and she won't necessarily have to be there (if you haven't gotten the release already). Write a list of questions and ask them...

The big tests aren't really good for a person, too much of the dye can be bad for someone with bad kidneys, for example. It IS radiation in one form or another...and they're expensive.

Money can be a sticky situation....I'm in no hurry to die, but if I thought that I was truly headed that way soon, I would not want to leave my family destitute and owing hundreds of thousands of dollars in medical bills. That is just MY opinion. My life insurance is paid off, but I live in the real world and know how quickly that stuff can add up - and I am thankful I have health insurance! My claims the year of my surgery were over $80K, I paid out a few thousand....but I wasn't getting the big ol' expensive tests every time...and insurance only covers so much and then they refuse to pay. I don't want to die, but I really don't want my loved ones to have to deal with anything besides grief if I do pass. Worrying about a next meal and keeping warm is too much to leave as a legacy.

But back to where I wanted to go in the first place (I digress, my apologies, lots on my mind right now) - no matter what, your mother (and everyone else) should live life to the fullest. We are never guaranteed another day and never know when a beer truck may come barreling down the street with our name on the grille.

Take care,

Becky