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CALLING ALL LC SURVIVORS!!!


Connie B

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Hello everyone...Just joined and my first post.  Back in early 2017, I had bladder cancer of which I am cleared, but have to go for treatments till 2020 every 6 months.  From CAT scans they found nodules on my lung of which were cancerous.  From that , I had 2 operations 30 days apart to remove the cancer.  I have to go once a year for scans.  Problem is,  by cutting nerves during the operations, my voice is not there.  Was told I have to wait a year to see if my voice returns.  My question is,  has anyone had this same thing happen to them ??  If so,  what was the outcome ??  Thank you for your feedback.

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Hi, Mayn.  I'm glad you found us.  I know there are some individuals on the forum who've had voice issues due to radiation, but I don't know about surgery.  I had a lobectomy almost 2 years ago and I have ongoing nerve issues in my chest.  The body does what it wants to.

Hopefully another member will jump in and have some information.

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Susan.....I also have the pain in my chest.  It comes and goes.  The doctors said it would subside but in reading about other people, it could last for a few years.  They had me on gabertinin.....1800mg per day, but it didn't,t help.   Don,t take it anymore.  Not withstanding,  I am more concerned with my voice.  It is very frustrating.

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  • 8 months later...

I had my lower right lobe removed in June (NSCLC type IIa)  and so far I'm cancer free, though still going through the quarterly tests for a while. I was hoping I would be over the surgery by now but I still have a number area front left stomach, burning pains, and quick horrible pains all over my right torso. I am not sure what is normal and what I should bother my doctor about. The sharp pains cause me to make a face - they are very sudden - and this is embarrassing because no one wants to be around sick people LOL. I've just been taking naproxin for this and I can only sleep comfortably in a recliner. My movement is pretty much back to normal, but I've lost a good bit of muscle tone. I am not morbid about this, but I would like to be able to discuss these weird pains with people that understand and that possibly have some ideas for relief. I was always super healthy and very active and I don't really have good patience with myself..

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  • 5 months later...
  • 2 years later...

Hey all.....new here :)  Yesterday was year 7 of having my upper right lobe removed for a stage 1B.  I understood I qualified as "B" because my tumor was .5 centimeter larger than 1A would dictate. But because it was only a 1/2 centimeter I chose not to have chemotherapy.  Fingers crossed!

The reason I'm here is because I just had my follow-up scan and the way they did it this time caused me my little freak out now......in the last 3 or 4 CT scans it was in and out....the machine whirs up and I breath in, hold and breath out a couple times then I'm done..  This time they did the usual couple times and then a 3rd time they went incrementally moving a little bit each time and having me breath in and out each time.  They've never done that before.  It makes me fear the cancer has returned.  I can only find solace in that if there IS cancer again it's caught early......but I can't shake my fear.  I can't talk to anyone about it because everyone would jump in this worry bucket with me.  I have to wait until I hear from my Oncologist because they found something  or until my appointment with her on Oct. 1st to get the results......the old adage "no news is good news" works here for me.......sigh.....but I hate this.  I hate the reminder, the fear and anxiety that goes with this.  And just so you know: I smoked for 27 years.....I quit the day my Dad told me he had lung cancer and then he died 3 1/2 weeks later.  I lost a first cousin when she was 48 to lung cancer and then my mother died from lung cancer so there's a history that makes my oncologist nervous to stop seeing me after the 5 year mark......so here I am having just past that 7th year.

I know there's really nothing I can do but this cancer monkey mind gets me every time I get this scan.

Thanks for letting me share........ ❤️ 

 

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I don't think you can draw any conclusion from how long the scan takes. My latest scan (and I'm dealing with somewhat ambiguous results) was super fast. I've had some that seemed longer than others. Might just be a variation on which machine is used or who the tech is.

But two weeks is a ridiculously long time to wait for results of your scan. Is there any way you could contact your oncologist and ask them to phone with the results sooner? On the off chance that there is something significant to discuss, that could wait till your appointment, but if there's nothing of any great significance, it would spare you a ton of stress to find out sooner.

Welcome--glad you found us. You might want to introduce yourself in the newcomers' forum. As you can see, there isn't much action on this thread--the last post was two years ago.

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  • 1 month later...

Hi - thanks for the response....I lost the link to this and just found it again- whew!  So my scan was normal.  I couldn't wait for the results due to my cancer monkey mind so yes, I did reach out to my doctor and she called me with the results.  Everything is "stable".   I hate going through this every year but am glad that I have health insurance and CAN get this scan every year.   Thanks for letting me know about the new comer's forum......I will take look there.  Thanks for answering.....it's sites like these that help me cope.  :)

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Hello everyone, I was diagnosed with Stage 4 NSCLC one 2015. I am EGFR so have been on both liquid chemos and pills for my EGF. In 2017 my cancer decided to visit my brain so I went through Cyber Knife radiation which worked on my 6lesions. MRI brain scans every 3months plus Pet-Scans every 3months. Since 2017 till now I have had 3 more lesions and thank God for the radiation as so far no activity. Just 1 of them shows a little activity but my radiologist will do another MRI in January 2022 to see if any more growth and if so then another radiation. My lung tumor has been dormant since 2018 but still having the Pet scans done but now only every 4-5 months. I feel so good physically and mentally so I asked my Oncologist just last year(2020) in August if I could take a break from chemo since I have been on it since 2015. I thought about this for awhile and talking to my husband, which was difficult. He of course was reluctant but agreed with my decision. My Oncologist said ok lets see how I do and if any change in my Pet scans then back on. Well it’s now been 15months without chemo and my last Pet scan showed no activity. Yes, indeed I am scared but I was scared on chemo. I am taking chance a but with all the new advancement in Lung Cancer treatment I have a lot of hope. Hope is what  makes me go on living with positive feelings that I can indeed go on with this journey living my best life. I would like to say to all of you out there that I have done a journal from the beginning of  this onset and that is the best medicine for me as I am totally in charge of my mind and say just what my true inner feelings are. This journey has made me a totally different person and in a good way. We all don’t live for the moment but with this now I have looked at my life and I missed out on so much time that I just didn’t have time for. Now I take each moment and cherish it and all the ones in my life that I so love. I see even the little things that it all matters and I feel calmness in me. This disease has maybe taught me a life’s lesion to slowdown and appreciate this life as I now have and it’s a blessing not a disease. Thank you for listening to me and there is HOPE for all of you out there. I have beaten the odds as I read in the beginning maybe 3-5years well I proved them wrong now it will be 7years in February 2022 . As the saying goes “Stop and smell the roses”. Oh so true..

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Lana,

Welcome here and I am overjoyed to learn of your treatment success. Seven years is indeed a significant period and I hope future scans continue to reflect good news.

Stay the course.

Tom

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Great post, Lana. You are an EGFR veteran with a mindset much like my own. I hope I can "stay the course" (as Tom says) as long as you have. Best wishes for good scans in January. What targeted therapy do you take? I take Tagrisso, and it has worked well. 

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