Sorry for constantly posting, have so much anxiety

[catlady91]

I'm very neurotic naturally and a big worrier. I worry about the smallest things. Now I'm worried that even if my mum is cured of her current cancer, that she'll develop small cell lung cancer, which is deadly. I've read about people who were previously treated for non-small cell only to have the cancer come back or develop to small cell. What are the chances of that. My mum was diagnosed with 3B squamous cell non-small cell lung cancer. My mum was a heavy smoker, but gave up almost 15 years ago. I know that small cell almost always develops in smokers or former smokers.

[LexieCat]

I just heard about that for the first time, while dealing with this latest round. My surgeon mentioned it as a possibility (based on what he was seeing on the scans) and Tom told me that does sometimes happen. It's apparently (from what I read) somewhat more common in people with EGFR mutations, though I think it's still fairly rare. I don't know yet what mutations, if any, I may have because I haven't yet had a molecular study done.

Look, there are SOOO many possibilities with lung cancer that if you worry about all of them--even the ones that are, at best, remote possibilities that rarely occur, YOU will expire of worry long before your mom dies of cancer or anything else--including old age. I suggest you do your best to just focus on the next goal of her treatment. There is no possible way you can figure out how long she will be around--it could be for many years. There are plenty of people here who have been around for a LONG time with advanced cancers. 

The last thing I know *I* want is for my adult kids to be consumed with worry. Of course, they are both concerned (and, yes, worried/fearful to some extent) but their dwelling on it sure as heck isn't going to help ME any. There are plenty of things you can do that WILL support your mom. When I was musing last night to my daughter (who lives way across the country in Colorado) that I wasn't sure how I would get to/from my biopsy/bronchoscopy appointment, she contacted a couple of her friends out here in NJ area who offered to drive me. As it turns out, my neighbor will be able to take me, but it's good to have a backup. That's the kind of practical help that will actually benefit her. Your time is better spent doing things to make life easier and more enjoyable for her than fretting over things that conceivably COULD happen, but you have no reason to believe is LIKELY to happen.

Are you seeing anyone, yourself, to help manage your anxiety? That might be something worth exploring, too.

[LUNGevityKristin]

Please don't apologize for posting, that's why we are here!  I just wanted to send over some resources for caregivers that might be helpful: https://lungevity.org/for-patients-caregivers/caregiver-resource-center/resources-for-caregivers

 

We also have a caregiver Zoom Thursday at 7pm EST if you would like to join us. 

[Steff]

catlady91,

I understand your worry.  It took me a few years to get over the constant worry that my mom could die any second from her lung cancer and that every ache and pain meant that her lung cancer came back for a 3rd time.  Every second of every day and every minute of every phone call with my mom was consumed with worry and questions of how she was doing, what side effects she was having, what she ate, how she slept, etc.  It got so bad that I broke down and agreed to try and antidepressant/anti-anxiety med, which helped me with my feeling of hopelessness.  So, like I said, I understand your worry.  I was so consumed with her recovery that I missed out on enjoying my conversations and time with my parents.  Although I don't know that I would change anything, if I could, but I am sad I missed out on belly laughs and happy memories with my parents due to my constant worry.  Now that my dad is slipping away from dementia, that time I missed  due to my worry comes back to haunt me.  So, my message for you is to not let lung cancer consume you.  The reality is that we will all meet our demise and I would rather have happy memories with my parents than missing out on the joy I could have had if I wasn't so worried.  

Turn your worry into motivation to learn all you can about your mom's condition so you can be the best advocate for her.  I'm seen as the boss of my mom's care.  Her job was to get better and my job was to arm myself with knowledge so I could have educated discussions with her docs.  This helped me feel like I had a bit of control, which was important because I am a total control freak.  

Another reality is that your mom's lung cancer might come back after a period of NED/no evidence of disease.  Many here have had multiple recurrences.  While it completely sucks to have to go through treatments again, they are still her LIVING their life and that is what is most important.  See, lung cancer is not treated like the death sentence anymore - if your mom's doc is treating it that way, I would suggest finding another doc.  Due to advances in testing and treatment, lung cancer is now being treated like any other major chronic health issue.  LUNGevity's catch phrase "Find it, Treat it, Live" really hits home when you think about it.  The goal is to find LC as early as possible, treat it, and go on living.  Now that your mom has been diagnosed, she will continually be monitored, even if she is found to be NED.  The constant CT's, xrays, PET's, etc is to ensure docs will find any new LC quickly so they have more treatment options available.  So, will your mom's LC come back after NED? Maybe.  Will it come back as SCLC? Maybe (although I'm not sure how common that is).  Do you have time TODAY to make happy memories with your mom? ABSOLUTELY.

While I hate when people tell caregivers that they need to take care of themselves and worry less, I'm going to hope that you are able to set your worry aside and truly enjoy the time you can spend with your mom.  Laughter and fun is some of the best medicine and shows our loved ones what it means to continue their fight to LIVE.  

Hope this helps a bit,

Take Care,

Steff

[GaryG]

catlady91

Like your mum I was diagnosed with 3b nscls adenoma and like your mum I smoked 35 years ago.

Every time I start worrying( and I used to do it more often) I read these words of wisdom  written by Tom Galli and they do wonders for me.  I figured If it works for him with all that he endured with cancer, it should work for me.  Enjoy and the best of luck.

 There are no lifetime guarantees with any form of lung cancer. Thankfully, conventional treatment often extends life. How long? In my view, how long is irrelevant. I didn't know how long I'd live before my diagnosis. Retrospectively, it seems odd that after diagnosis life tenure became an overwhelming concern, and that concern ballooned into severe depression after each "successful" treatment and recurrence. I eventually learned life tenure is immaterial if I fail to enjoy each moment of additional life treatment afforded me.

 

[catlady91]

Thanks everyone for your replies. I know that I should stop allowing these worries to consume me but I don't know how. I don't have any friends who understand and I don't want to talk to my mum because she's so positive. My mum sees her lung cancer as a chronic condition like you mentioned and she's not letting it get in the way of her life. She has a great quality of life and is very active. The doctors tell her how well she looks. They're extremely positive and her oncology team are aiming to cure here, which is one of the positives that keeps me going. Her team has been excellent! I don't know if they mean cure as in they hope it will ever come back again or that she'll reach NED, but then it's not really a cure if it comes back after NED. Despite her advanced stage (3B), the doctors are positive. My mum is currently having immunotherapy and her consultant says that she's responding well to it.

It's hard to make all the worries about the future go away. The only way that I'll feel better is if I know that she's going to be ok. I know that in life there are no guarantees. I could get hit by a bus tomorrow. I feel very up and down with my moods. I'm trying to remain as positive as possible and believe that my mum will touchwood be a success story. Everybody keeps telling my mum how well she looks and how nobody would think that she has cancer. My mum has a huge zest for life. Another positive is that my mum's consultant for immunotherapy said that her blood work is really good and back to normal despite the heavy chemo that she had. 

[catlady91]

Also the doctors haven't really said anything about if the lung cancer was to return. 

[LexieCat]

23 minutes ago, catlady91 said:

Also the doctors haven't really said anything about if the lung cancer was to return. 

That's because what would need to be done, if that should happen, will depend on what her status is then. I was out of the woods for three years until I was back in them. The doctors are sort of going back to step 1--figuring out what kind of cancer I'm dealing with NOW, as well as personal health considerations. Doctors are very much aware that the scenarios can change over time. This is something nobody could have predicted when I had my uneventful surgery. They would have seen it as a possibility, of course, but they wouldn't have been able to tell me how they would deal with it, because the situation changes over time.

I strongly second Kristin's suggestion that you join the Zoom meetings for some virtual face-to-face support from other caregivers. We give each other strength. I don't know where I'd be at, emotionally, right now without this group of survivors. Among us, there's someone who's been-there-done-that for almost everything you can imagine. Same goes for caregivers/loved ones. You might always deal with extra anxiety, but you can work to get it under control. Knowledge and experience of others helps. 

In my own experience, it helps to focus on the next steps. Fortunately, for right now, it's a clear path ahead of you. We're all uncomfortable with uncertainty. But given that it's a fact of life in this situation, we all have to build up our tolerance to it.