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First post-treatment PET

ksusan
Posts: 7
Joined: Aug 2013

I am new to this site and hope to find some good information here from other lung cancer patients. I've been to many med sites on internet and read extensively about lung cancer. I am stage 3 adeno and had cancerous lymphs outside lung removed.

I completed first round of treatments (chemo/radiation) and just had my follow up PET last week with result showing no obvious disease. Something showed but doctor said we'll wait 'til next scan to see if it's still there.The doctor was surprised by my lack of joy. I told her I have read on the internet that most people have clear scans the first time  but have recurrences months later. I am depressed knowing this is true for the majority of cases. I am having a hard time with this fact and am afraid I will spend the rest of my time worrying about that dreadful five year hurdle that few reach. She said that only 20% make it to five years. I asked if any of her patients made it to that mark but she answered that 'everyone's different' and I should stay positive.

I've read a few posts on here (lc threads) as well as other cancers and feel I can't feel joy for fear of disappointment later which I won't be able to handle. Is this some natural defense and has anyone else felt this way? I feel hopeless.

Please don't lecture me about being positive as I have been lying to everyone about how I feel since a doctor told me I was too negative and it is positive thinking patients who do best in dealing with cancer. How do you get positive with such depressing statistics handed to you? 

I am embarrassed to post this.

Susan

 

 

debbiejeanne's picture
debbiejeanne
Posts: 2590
Joined: Jan 2010

susan, i understand ur being negative.  cancer does that to people.  i spent 1.5 yrs being negative.  i now see that i just wasted a lot of time but when u r going thru it, it doesn't feel that way.  i'm sorry u r so worried about it coming back.  we all worry about to some degree, we just try not to let it consume us.  i pray ur worries will ease up and that u start feeling better soon.  try to be happy for the ned u just received Laughing.  i pray u will see ned many more times to come!

dj   

dennycee
Posts: 686
Joined: Mar 2011

Sometimes the only thing I can be positive about is -I AM POSITIVE CANCER SUCKS.  So much so that I bought two shirts that state just that.  If its at all possible find a survivors group.   Your onco social worker should be able to guide you to one.  It made a tremendous difference for me to talk to other survivors.  Please know that the moment you were diagnosed you became a survivor.  New patients are called acute survivors by the medicos.  

I don't blame you for not being thrilled with your PET results.  I am curious as to why they did a PET rather than a CT.  at this time of year there are so many things floating around in the atmosphere that lungs sensitive due to irritation from rads would easily become inflamed.  Also the irritation from radiation itself may respond by lighting up.  A CT would likely get a better read.  

Three years ago this October I was told I had stage four adeno and had maybe ten months with treatment.  At this point I am on a six month schedule for CTs.  my dr has never told me I am NED (no evidence of disease), instead they tell me am have had no evidence of recurrence and that is good by me.  

I give partial credit for my mental health to the Paxil. I recommend you get an anti depressant if you are not already on one.  Also, i found that my responses are authentic with these newer meds.  If i would respond to something in tears because I am sad normally, i still respond that way.  It just makes the cancer thing more managable.  Okay, THIS IS WHERE MY SUSIE SUNSHINE COMES OUT- if you happen to fall into that ten percent of people who survive then your chances are 100%.  Okay, Suzies put away now. 

seriously, tell the people around you the truth, they don't have to listen but you shouldn't tie yourself in knots lying to them.  It's healthier for you.  

 

GrannyT62's picture
GrannyT62
Posts: 6
Joined: Mar 2013

Susan:

Honestly when you are told that you are a stage 4 cancer patient does not matter what kind or where it is your going to immediately be scared and think that life is over for you no matter who you are.  Cancer no matter what stage it SUCKS!!!! 

I think that you have to go through the process kind of like a death you have different stages to go through before your able to have positive moments.  I would not hold in my negative thoughts because it may be doing more harm to you.  Tell people how you really feel.  Yes they do say positive people do better but I think you have to get those negative emotions out to become positive. 

I was diagonised with stage 4 small cell in December 2012.  I can honestly say that I was scared out of my mind.  I had been sick for a long time and kept going to the doctors and they kept giving me medications and telling me I had Chronic Bronchitis for over 5 years.  I was never without a cold and lung infection.  They started treatment in January and by April I was feeling better.  I do have some different pains and aches now that I never had before but I went through the Scared, Mad, Denial, and Bargining stages and now I am at the I will deal with it stage. I don't think you will ever be cancer free but I think it is like having a heart condition it is treatable. 

Enjoy your life and if you feel negative energy you should get that out in the open.  The social worker where I have my treatment helped me alot in the begining because Life as I knew it was different.  Life as I knew it almost a year later is still different for me.  I have had my first check up and it was good now working on the second check up and will find out the results on monday and I am praying that they are good. 

I pray that you will begin to feel better and have a more positive outlook on life.  I spent alot of time talking to God, not sure if you believe but it helped me alot. 

The other thing is yes the statistics are depressing but you have to believe your gonna beat them.  If you were not strong before diagonis you will be over the course of your treatment and recovery.   

ksusan
Posts: 7
Joined: Aug 2013

Thank you all.

 

 

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