questioning whether I am still cancer free

I have been cancer free for 17 months. I was flying for my check ups every 4 months, this time is 6 months!
My next cat scan will be March 25th. I have been experiencing pain in my right ribs which is the opposite of where my cancer was. Since I have Mesothelioma the first symptoms are usually pain around the ribs. I am still on high doses of pain medicines, and still feel the pain on the other side almost every day now for 3 months. I have no need to find out sooner than March because I have been told there won't be anything they can do. I only have my right lung and once the asbestos settles it's breathed through the whole lung and makes the whole lung diseased. I also have been having twitching in my right eye, there is a nerve that runs from the eye to the back of the chest wall which is effected during this disease. It has caused my left eye to be lazy. I do work out? What else can be causing this?
I have been passing hints to my husband about if the cancer comes back what my wishes are. I don't want to fight a endless battle because I can't handle any more pain or being more disabled for the next 40 years or so. Don't think I haven't been fighting to be here but its hard enough the way it is.I have been doing everything possible to be back to normal. My only real concern is I don't want to leave my 6 year old behind, we depend on each other so much, and I want the best for him. I don't want to lose control on how he is raised and I don't want to be without him. I don't want him to miss me and forget me, so now as I fight I still want to prepare the worse just in case, it's going to happen to all of us but hopefully not in my 30's. I still want to experience the world with him. I love him so much! Should I ask my local family doctor for a cat scan or should I wait?? I really don't want to know! But it would ease my mind if everything still looks good.

By Marylou1
Posted January 19, 2009 at 4:18 pm
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Hi:

My Oncologist is ok, but my primary doctor is absolutely the best doctor anyone could ask for. Whenever I have had questionable pain I have said to him, "the first thing I think of is the cancer coming back." His reply to me was ..."Yes, I understand. Cancer is the Elephant in the Room." " It's the first thing you see."

If getting a cat scan will ease your mind Go for it!! If your family doctor will get it for you, better yet. I know mine would do it.

In the meantime I will be sending good thoughts and prayers your way.
***Many Hugs***
Marylou

By peyz33
Posted January 19, 2009 at 6:25 pm
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Hey - I am so upset after reading your post - I want you to have all the time in the world with your son -0 this cancer is so unfair....but you know the answer to your own question - if yu really think that knowing the results will eae your mind then you should get the test now. I think you are so brave and you never complain or have pity party's (I do - as you know) - I read a story once about a mom who had cancer and she left videos to be shown to her daughter at different times in her life - like first date, sex...lol, you get the jist. At first I thought how morbid - but she was so happy in the video's and so alive - and her daughter felt so much love - and thru the fils was able to know her mom - so if you really have this fear of leaving too soon - that might make you fell better - at least it's DOING something. I am always here to talk - you know where to find me on your "friends" list......praying that whatever you do it's GOOD news and we can do a Happy Dance.
Karen

By 1lung
Posted January 19, 2009 at 7:01 pm
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thanks so much, I have thought of atleast doing more home videos. When I was really sick, we made a video of making candy together, and when my husband watched it, it made him cry and he thought it was a good video because we were happy in it.
We had good pictures taken that year as well, I was thinking of getting pictures done again just the 2 of us. Even if I am cancer free these things are nice to have and do.
I think I will make an appointment and let him decide on whether to do one now or wait. Maybe he will know its inflamation from workouts or something.
I love this site, it helps me get through alot. thanks for both of your help, I knew I could count on you Karen to cheer me up. We should get together and meet and do something crazy and fun girls day for a day or 2!!!!

By texaszan
Posted January 19, 2009 at 10:48 pm
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I'd get the scan. If it's clear then think of all the time you've spent worrying for nothing. If the result is not so good then you have more time to prepare for whatever comes next. I bet it will be clear though. keep us posted.

By a_white_rabbit
Posted January 20, 2009 at 12:59 pm
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to '1 lung"..

..i know how you feel, i'm 53 and i have a 2 year-old, wellll ok nearly 3, my first-ever child...

..and a boy...

..and just after my wife pupped, i was diagnosed, and we had all the follow-up..

..one day at a time, s'all you can do....

..but then, one day at a time is all we ever really have anyway...

..get real girl...

..you can't live your life for your child, you can only live it for yourself, s'yr life..

..ok, i've laid up vidoes, photos, and some 600GB of movies for his future, and yes we work on the fields together, and tomorrow, i'll take him on a Ferris Wheel ( i missed his earlier visits to the fair, i was so ill) and he'll learn, and remember...

...i'll teach him all i know, until i stop breathing, then he'll bury me, and grieve, and read the farm diary, and learn ......

...all we can do, is our best for our kids, cancer or no..

By maxgirltou
Posted January 20, 2009 at 3:27 pm
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I know, it's so scary, especially with the children. Get the scan done, not knowing is so hard. My prayers are with you and your family.

Tina

By sb
Posted January 21, 2009 at 7:57 am
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Hello - Are you at a really good place like Sloan Kettering in New York - maybe you should get a second opinion?

Along the way my scans have been done earlier than planned because of pain or some other symptom that was worrisome to me. I think it would be so much better for you to get the scan and put your mind at ease. It is possible given all that you have been through that your pain is NOT cancer but just from all the damage you have had done to your rib area. If you overexert yourself or strain the muscles that were damaged in your surgery - you can get something called recall pain. I have had so many weird pains since I had my surgery that have come and gone. There are so many other reasons for your pain than cancer - you should find out so you can live your life!

Too hard to keep worrying - I would insist on the scan - it could make you feel so much better. What is the point of waiting?

Sharon

By 1lung
Posted January 21, 2009 at 3:52 pm
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thanks for all the replies. I do go to Sloan Kettering, which I have an appointment in March for my scans. I am 11 hours away from there.
Today I had my appointment with my pain specialist and he doubled my nerve pain medication to see if that helps. My problem is the other pain I was telling all you about is the opositite side of my surgery, just sharp pains under my right lung. I don't have a doctor I go to where they can answer these questions. My pain doctor does his best. I will call my family doctor Monday and go and ask for a scan if after the higher dose of medication, I can still feel pain under my right rib. I thought about making an appointment for my eye at the eye doctor to see if he has any answers for my eye twitching. I will update, thanks

By colabella
Posted January 24, 2009 at 12:57 pm
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i SHOWED YOUR POST TO MY DAUGHTERS {AGES 10 AND 9]AND NOW YOUR IN OUR PRAYERS. DON'T BE SCARED SILLY,STAY AS STRONG AS I THOUGHT YOU ARE AND REMEMBER ALL THESE PEOPLE AND OUR FAMILY{EVEN THOUGH YOU DON'T KNOW ANY OF US } ARE ALL THINKING OF YOU AND YOUR FAMILY. KEEP US POSTED;GOOD LUCK....

By stephanie410
Posted January 25, 2009 at 10:56 pm
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Take a deep breath... In....out....

It makes sense to talk to your doctor and ask for a scan, even if it just reassures you. I have pain off and on and I always get worked up, but then when I'm scanned I find it doesn't necessarily correlate with any progression.

It's good to listen to your body, but know it might be wrong! Try not to worry TOO much until you get more information.

I'm so sorry that you face these questions about life for your child without you. I live them with you, my dear, and I understand. I wish I had some good advice. Just try not to get ahead of yourself.

Much love,
Steph

By sd
Posted January 26, 2009 at 12:20 pm
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Hi 1lung, I'm new to this site but I also have only one lung. Had rt. lung removed in May of 07. I have not had any chemo or radiation as of yet. I experience tremendous pain and discomfort on both the affected side and also on the other. It seems to be worse when I'm tired and have over done it. The question of whether it's the cancer back at a different site , is always there. The indescribable fatigue that comes over me is something that I have not gotten use to. I know only that I will not let this disease take anything else away from me. I hope by connecting with people who understand what I'm feeling, this journey won't seem so bad.

By 1lung
Posted February 13, 2009 at 7:28 am
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I have been doing good. My doctor raised my Lyrica to where I take it 3 times a day instead of 2. It last all day now! The pain has decreased alot with that. I have been in better mood and are up out of bed more. I am waiting for my cat scan just next month. I feel it will be clear again. sorry I haven't wrote in awhile, my computer was getting fixed take care and thanks for checking on me!

By ACRES
Posted February 13, 2009 at 9:29 am
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There is a new lung cancer vaccine in phase 3 by GSK for people who acheived remission to prevent recurrence it has shown promise. Talk to your doctor to see if you qualify for the study. Antigen Specific Cancer Immunotherapy (ASCI) that teaches your immune system to fight cancer if it recurs. Because it is an immunotherpy it is not toxic like chemo/radiation. Here is the site to learn more:
http://www.immunotherapyforcancer.info/

By ACRES
Posted February 13, 2009 at 9:32 am
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You may want to check with your regular doctor because it could be chest pain related (heart). This can occur after chemotherapy / radiation. Are you a candidate for a lung transplant?

By 1lung
Posted February 13, 2009 at 12:38 pm
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no I am not a candidate for lung transplant. I asked my doctor and she said if all I have is one lung and it is diseased, I would not qualify for transplant. If the mesothelioma builds in the lung it effects the whole lung right away. She tells me if it would come back it would be soon rather than later, that its aggresive and would be back with in 3 years. I am half way there, so I feel it will not but am scared it might!!

By stay
Posted February 23, 2009 at 11:23 am
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Hi i too have only one lung and a 6 yr old but i was dx in june of 06' and surgery in oct of that same yr, i take no meds though. i have some pain and when it comes i think it's the cancer coming back and taking hold. i only allow my self to think that way for short amounts if time cuz i know if i dwell on it i will feel worse. i believe positive thoughts bring positive energy.try not to worry and do what you need to feel better.
so i send good energy to you
staci

By karenere
Posted February 26, 2009 at 8:01 pm
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I also go to Sloan, and I call my oncologist for everything. Sometimes I think I am a pain in the neck, but it's my life we're talkin about here. He will let me know if I should be concerned an come in right away. He has always given me the correct advice. A few times I went to my local ER. I had aggressive chemo, right lung lobectomy, and sterotactic brain surgery. My body went through a whole pile of strange things that I thought was the cancer or I was having a heart attack. Scary. Your body went through an awful lot of trauma. So you are going to feel things you never felt before. But if I were you, I wouldn't hesitate to call Sloan. They are wonderful. Good luck.
Karen

By 1lung
Posted February 26, 2009 at 10:05 pm
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thanks, I am waiting it out at this point. I have not had any treatments since radiation that ended Nov. 2008 I have no doctor to just call and chat with, I feel I am figuring it all out alone other than my pain specialist I see once a month. they are limited to their profession. I have 4 weeks at this point. I do have right rib pain today. do you get pain in your left lung or around your ribs? Is it due to the only lung working harder?

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