MDJunction - People Helping People
 
Ask a Question
07/21/2009 12:57 AM

Yearly check-ups

Dexma
 
Posts: 52
Member

I'm going to my second yearly check-up next month. I'm getting a blood test and a physical exam and somehow that seems just too little. I don't want to just wait for the cancer symptons to kick in and then go to doctor. My doctor however says that scans don't work so well as pre-emptive measures and they will just cause follow-up scans that can themselves cause cancer.

My mother and my mother's sister both died from brain cancer so that's why I'm anxious to get a brain scan on check-up. I read in one article that this is the normal protocol (scanning areas where relatives have had cancer), but my doctor is still reluctant. I think I'm the only one with this syndrome in my country (I live in Finland) so I'm beginning to wonder if the doctor really knows that much about my condition (even if she is cancer specialist she only deals with patients that already have cancer).

Well, here are my questions. Do you take yearly check-ups? What is included in those check-ups? Have they actually helped to locate the cancer before the symptons or do they just offer a false sense of security? Are you satisfied with your doctor and check-ups? Same questions if your family members / loved ones suffers from the syndrom.

Post edited by: Dexma, at: 07/21/2009 12:57 AM

Post edited by: Dexma, at: 07/21/2009 12:59 AM

Reply

07/21/2009 07:54 AM
kimedo
 
Posts: 34
Member

Our children have yearly check-ups, but because Li-Fraumeni can strike anywhere it is difficult to test. We've opted not to do major scans since false positives put children through unnecessary stress and radiation itself can cause cancer particularly for LFS folks, but if something does come up (like pain somewhere or a lump) we are aggressive in testing and don't waste time. Even though we are vigilant parents there have still been times when a diagnosis was difficult to obtain. Osteosarcoma can be particularly tricky because you often first think the problem is an injury from sports or a fall or something easily explainable. Our motto now is, once a pain or lump arises, test for cancer first then if all is clear look for the simpler explanations.

My recommendation to you is first, always listen to the voice you have inside. It is never wrong. Your feeling that a blood test and physical exam is not enough must be listened to and followed. It won't hurt to do an MRI of your brain (no radiation). You have to be your own advocate and insist on what you feel is best. If your doctor won't do what you need, then find one that will. My husband's last cancer was found because our doctor was aggressive and ordered a test when he was feeling abdominal pain. His prior cancer was found when he was scanned for a lump on his shoulder. It turned out to be nothing, but they noticed the nodule on his thyroid and he had surgery and was treated before his vocal cords were affected. He had no symptoms with the thyroid prior to the test.

Since you have a family history of a specific area, I would think testing would be wise. But how often should you test? I don't know. Have you spoken with a genetic counselor? They often can help with these kinds of questions.

I am very pleased with our current doctor. He is very aggressive and knowledgeable.


07/23/2009 02:02 AM
Dexma
 
Posts: 52
Member

Thank you for your fast and encouraging reply.

I have the yearly check-up in two weeks. I'm going to press for brain MRI. Before meeting with my doctor I had multiple meetings with a genetic counselor. She was the one who told me the results and directed me to my current doctor. She just said that previous occurences in the family can indicate a certain trend in the syndrome. As I understand, each LFS mutation is somewhat unique. But she didn't say anything for sure, just some guesswork.

She and my current doctor both seem to think I shouldn't look too much into this, but since I have a good chance I won't live to be thirty, I think it's very understandable that I want to know everything I can about preventing this. So I'm going to make a stand and not be confused this time around like I was in the first check-up.

I also have a strange pain in my knee. I hurt it maybe three weeks back and it seemed to recover fine but now it's starting to act out again. I play sports regularly so I took a week off. It seemed to be okay and I had a training session without any pain. After that it's gotten worse with no apparent reason (it even hurts in the morning just to get out of the bed even after a good night sleep). I've rested close to two weeks already and I'm starting to get a bad feeling about this even though it is a mild pain and it comes and goes.

When you said that osteosarcomas often masquerade as a sporting injuries, alarm bells started to ring in my ears. Then I read that 50% of osteosarcomas develop in the knee area and that it's fairly common with LFS. I'm wondering if I should wait two weeks for the check-up or do something about it right now. It might still be possible for it to be a sporting injury (I hit it pretty hard) that's just recurring because I have a semi-physical part-time job (bending down, some lifting etc.) I'll wait for a couple more days and try to be extra careful with the knee and see if it heals.

I hate all these doubts. I have a diagnosed migraine so every time I get a migraine attack I'm wondering if it's just migraine or a brain tumor and how can I tell them apart.

Sorry for posting this overly long message. I have a habit of writing long posts Smile

Post edited by: Dexma, at: 07/23/2009 02:06 AM

Post edited by: Dexma, at: 07/23/2009 02:07 AM


07/28/2009 03:07 AM
LFSHelsinki
Posts: 1
New Member

You are not alone in Finland. I have similar kind history. Unfortunately there is no many doctors in Finland who really knows about LFS. I tried to have checkups from HUS but they say no becauce I have been allways healthy. For me only way to have checkups is use private Cancer hospital - Docrates. Call directly to Timo Joensuu.He knows something about LFS Smile

07/28/2009 09:34 AM
Dexma
 
Posts: 52
Member

Wow, what are the odds of that.. Thank you for the information. I'll send you a private message to talk about doctors and medical institutions in Finland some more.

07/30/2009 03:45 AM
kimedo
 
Posts: 34
Member

Hi Dexma,

I haven't been online for awhile. My laptop crashed, so it's not as easy to get online now. You should definitely pursue the pains you're having. The main symptom of osteosarcoma is pain. But at the same time do your best to be in what I call the "wait and see mode." In otherwords push worries out of your mind as much as possible. Worrying will not be profitable. I know this will be hard. I'm able to do this during the day, but the worries often come out at night while I'm sleeping or just after I wake up. Keep your appointment--two weeks won't be too long to wait. And please push worries about how long your life will be out of you mind. You have no control over that. The hardest thing is letting go of control--do what you can to ease your worries--like pursue pains aggressively, make sure your family is taken care of should something happen to you (good life insurance, etc.--I'm not familiar with how things are set up in your country...) and then let go of the worries about things you have no control over. I have a friend who has a saying hanging in her house that says, "It's not the quantity of life that's important. It's the quality." I think that's a good motto to live by.

Please let us know how your tests go. I will be praying for you.


07/31/2009 02:19 AM
Dexma
 
Posts: 52
Member

Thanks for your answer.

My knee has been better and my check-up is in six days. I'm going to ask the doctor about the pain in the knee, but since the pain is fading away and not worsening I'm not too worried anymore. I think it actually was just a nasty sports injury but I'll post my results here anyway.

I think I am at ease about how long my life will be. I don't think if I sound like that, but by realizing how my life could end suddently I gain peace to enjoy every day. You can't ever be fully in control of your own life - that's what makes life interesting. You can be in control of certain things but not fully.. you'd be just fooling yourself. So maybe it's my way to come into terms with all this. I don't want to avoid it or run away from it. I agree with the quality over quantity saying. I always say that "we all die but some of us never start living and that's the real tragedy", so maybe that's my version of that saying Smile So don't be too worried about me, I'm actually doing good right now. Smile

I haven't thought about life insurance. Our family isn't really dependable of me. We both study and have part-time jobs and we have no children, yet. And we have a good social security system even if all else would fail and some savings. But it's certainly something to think about, even if it's grim thinking of cashing in with my death.

And thank you for caring and for your prayers. I really appreciate it. How are things in your end?

Post edited by: Dexma, at: 07/31/2009 02:23 AM


07/31/2009 07:58 AM
kimedo
 
Posts: 34
Member

I'm glad your knee pain is better. That's so great! You are doing well.

We are all fine here. My son has only 6 weeks of treatment left! We will celebrate--go on a trip or something--when he is done. My husband is working with a functional doctor, and he is feeling much better--more energy. We go on daily bike rides. My daughter is well and is thinking about going on a 1 1/2 year mission for our church. Thanks for asking about us.


08/01/2009 12:07 AM
Dexma
 
Posts: 52
Member

Great to hear good news, even with all that going on.

1 ½ year mission, huh? You don't happen to be a member of The Church of Jesus Christ of Latter-day Saints, or a mormon for short? I think men have two years mission and women have more of an optional mission which is half an year shorter, too, if I remember correctly. So great conviction from your daughter.

Sorry for asking that kind of a personal question in public, but you seem outspoken about your faith. Visiting churches of different faith was part of our religion courses in school and from that point on I've been interested in the customs and beliefs of various different religions.


08/07/2009 06:41 PM
SilentWarrior
SilentWarriorPosts: 14
New Member

My Oncologist and I have had several discussions on the best way to follow my health. There are pros and cons to each decision and it came down to my 'sleep at night' factor.

I agree with you. I do not want to wait until I have symptoms of cancer before I get scans. Early diagnosis means less treatment and better prognosis.

I have had good experience with my Oncologist and we decided on a yearly PET Scan and head MRI in addition to blood work up. The downside of the PET Scan is the findings can lead to more decision making ie. it found a bone island in my pelvis. What do we do about that?

The head MRI found white spots in my gray matter. I'm currently seeing a neurologist to rule out scary stuff.

Overall, I am glad we did the scans and I am comfortable with the current plan.

Reply

Share this discussion with your friends:
<< Start < Prev 1 Next > End >>


Disclaimer: The information provided in MDJunction is not a replacement for medical diagnosis, treatment, or professional medical advice.
In case of EMERGENCY call 911 or 1.800.273.TALK (8255) to the National Suicide Prevention Lifeline. Read more.
Contact Us | About Us
Copyright (c) 2006-2014 MDJunction.com All Rights Reserved