Scared my mum will develop small cell

[catlady91]

Sorry for posting again and for bothering everyone but I can't get this fear of my mum developing small cell out of my mind. My mum is doing incredibly well. Apart from immunotherapy side effects which are normal, her doctor said that her response to treatment has been excellent. She went to the hospital on Friday about the steroids for her inflammation from immunotherapy- she saw another doctor who on the team who confirmed that her scan was excellent and she couldn't even see the tiny remaining bit of tumour. She said that such a good response so soon isn't common and that my mum is an exemplary patient. 

This is fantastic but fears creep in the back of my mind. What if my mum is NED and then the cancer comes back as small cell? Small cell lung cancer is a death sentence, even in the limited stage, average survival is less than 2 years. I've read that 5 year survival for limited and localised stage is 27%, but there seem to be very few limited SCLC survivors.

There's been little progress with small cell. Is there any risk for people with squamous cell developing small cell as a secondary cancer. I know that small cell is most heavily associated with smoking. My mum is a former smoker and she quit 14 years ago. She was a fairly heavy smoker, can't remember how much he smoked, maybe 20 a day. I think she's had the odd puff during those years that she quite and she used to inhale my sister's in law's smoke, but my sister in law luckily gave up about three years ago.

[Judy M2]

You mom's response to treatment has been excellent! Hang your hat on that. I think most of us patients have to live one day at a time. My response to treatment has likewise been positive but my (NSCLC) tumors haven't shrunk to the extent hers has. But remember that your mom will be followed every 3 months, so any changes--if they do occur--will be caught early on. 

I hope you can live in the moment and enjoy her great success. 

[catlady91]

Thanks Judy; I'm glad to hear that your response to treatment is also positive. I try to live for the now but I can't help worrying about the future especially as my mum is a former smoker and small cell is the most strongly associated with smoking. I've tried to find info about developing SCLC as a second cancer after NSCLC but there doesn't seem to be many studies. Even when caught early small cell has a poor prognosis 😢. 

[Judy M2]

There was a man on the SCLC forum who survived for 10 years. Don't drive yourself crazy. You never know what research will come up with. Keep the faith. 

[LouT]

catlady91,

Judy is right...you need to focus on where you are rather than living in the future full of fear for where you might be.  Right now your Mom appears to be responding exceptionally well and that is good news, so treat it like that!  Celebrate, enjoy it, give her a hug, be thankful in whatever way you prefer.  But, remember that this is what you were hoping and praying for and now you have it.  Don't lose the opportunity to enjoy the time with your Mom, each and every day.  Learn enjoy today while it's here and to face tomorrow when it comes.  You've gotten great news now you just have to accept it.

Lou

[Steff]

catlady91-

I understand your worry about the future.  I experienced that with my mom's initial diagnosis and recurrence.  But lung cancer eventually becomes a part of life and you move on from it - most people do, anyway.  My worry about the future took away quality time with my mom.  I was picturing her death versus accepting that she is here with me today.  My mom and I have had many adventures in the 5 years since her initial diagnosis.  I enjoyed these times much more when I focused on the now versus the tomorrow.  Your worry isn't going to prevent anything from happening.  It is only going to affect your own mental and physical health.  If you don't care about your own health, you should think about how your own decreased emotional and physical health will affect your ability to care for your mom in the future.  Just because your mom was diagnosed with a chronic health condition doesn't mean you need to live your life in constant stress and worry.  In the words of Jimmy Buffett, sometimes you just need to "Breathe In, Breathe Out, and Move On".  Seriously, just let it go. 

[catlady91]

I get what you're saying and I'm trying not to worry but I feel scared sometimes and worry about the worst. I also want to know how likely it is to develop SCLC as a secondary lung cancer after having squamous cell NSCLC or is it rare? There was a lady on one of the forums that got SCLC as a second lung cancer after squamous cell NSCLC, a couple of years after being in remission.

[GaryG]

39 minutes ago, catlady91 said:

I get what you're saying and I'm trying not to worry but I feel scared sometimes and worry about the worst. I also want to know how likely it is to develop SCLC as a secondary lung cancer after having squamous cell NSCLC or is it rare? There was a lady on one of the forums that got SCLC as a second lung cancer after squamous cell NSCLC, a couple of years after being in remission.

Worrying and being scared all the time will harm your mother instead of helping her. She needs a strong person who is in control and who is capable of solving problems at anytime.  Use your emotions instead to enjoy her presence and celebrate her good fortune . 

I wish I did.

Best.

[Steff]

Catlady - anything is possible when it comes to any type of cancer.  No one can answer whether or not your mom's lung cancer will come back.  Statistics mean nothing.  Just because 1 person has secondary SCLC after NSCLC doesn't mean your mom will get SCLC.  I think you are missing what's important here.  Your mom is doing well TODAY.  She is doing better than many others on this forum, including my own mother.  Be thankful for that and move on.  I'm sorry if this sounds brash, but seriously, you could be sitting in the hospital right now with your mom, like I am.  My mom was given a death sentence 10 days ago - aggressive leukemia.  We cried, we accepted it, and we moved on and started treatment 4 days later.  I can't help my mom if I am worrying about tomorrow and to be honest, today really sucks for her.  But she is still here and fighting.  So is your mom.  I'm going to quit commenting on this post because I don't want to seem insensitive to your concern.  Your concern is valid, but there is no reason to dwell on the what-if.  I know I don't have years left with my mom.  I might only have weeks or months, but I refuse to dwell on it because it gets in the way of me being in the moment with my mom.  I hope that you can find peace and move on to brighter days without constant worry.

Take Care,

Steff

[Sheryl E]

Catlady91, 

Well, I’m hoping you are wrong in the sclc, as that is what I have.  Mine was caught at stage 1 and I had a lobectomy.  Can’t say that your “worry” isn’t frightening to me now.  I’m trying to be positive and hoping I live through this but wut your grim thoughts I’m now wondering if maybe I won’t.  I’m glad your Mom is responding. 
 

Sheryl

[LUNGevityKristin]

Hi there,

I just wanted to share some of the caregiver resources that we have online: https://lungevity.org/for-patients-caregivers/caregiver-resource-center/resources-for-caregivers

We also are having a guided meditation for caregivers Thursday evening at 6pm CST (I'm not sure what time that is where you are) that could be helpful to get you to be calm and destress. https://lungevity.org/for-patients-caregivers/support-services/virtual-meetups-for-lung-cancer-patients-survivors-and?fbclid=IwAR08LEqb80kcxrK_10DOxiaHZ3BVLK7l4sLjq_45_a6bfWt94wNLpRSL4Ds

If your worry feels debilitating, you might want to check in with your doctor and let them know what's going on and the stress you are under and see what they recommend.  Being a caregiver is not easy and definitely takes an emotional toll.  Make sure you are taking care of yourself so you can be there for your mom.

[catlady91]

1 hour ago, Sheryl E said:

Catlady91, 

Well, I’m hoping you are wrong in the sclc, as that is what I have.  Mine was caught at stage 1 and I had a lobectomy.  Can’t say that your “worry” isn’t frightening to me now.  I’m trying to be positive and hoping I live through this but wut your grim thoughts I’m now wondering if maybe I won’t.  I’m glad your Mom is responding. 
 

Sheryl

I didn't mean to make you feel scared; I feel dreadful. You should stay positive especially as your cancer was caught so early and you're having surgery which is rare for SCLC! It's rare to find SCLC that early and have surgery for it. Please don't let my negative thoughts impact you. Focus on getting better. It seems like your chances are pretty good; much better than most with SCLC. Having surgery for SCLC offers the best chances and unfortunately many people with SCLC aren't able to have surgery.

Once again I can't apologise enough for making you worry, but please don't let what I've said get to you. As long as your doctors are positive and confident, my neurotic rantings shouldn't matter. Stay positive.   

[catlady91]

3 hours ago, Steff said:

Catlady - anything is possible when it comes to any type of cancer.  No one can answer whether or not your mom's lung cancer will come back.  Statistics mean nothing.  Just because 1 person has secondary SCLC after NSCLC doesn't mean your mom will get SCLC.  I think you are missing what's important here.  Your mom is doing well TODAY.  She is doing better than many others on this forum, including my own mother.  Be thankful for that and move on.  I'm sorry if this sounds brash, but seriously, you could be sitting in the hospital right now with your mom, like I am.  My mom was given a death sentence 10 days ago - aggressive leukemia.  We cried, we accepted it, and we moved on and started treatment 4 days later.  I can't help my mom if I am worrying about tomorrow and to be honest, today really sucks for her.  But she is still here and fighting.  So is your mom.  I'm going to quit commenting on this post because I don't want to seem insensitive to your concern.  Your concern is valid, but there is no reason to dwell on the what-if.  I know I don't have years left with my mom.  I might only have weeks or months, but I refuse to dwell on it because it gets in the way of me being in the moment with my mom.  I hope that you can find peace and move on to brighter days without constant worry.

Take Care,

Steff

I'm sorry to hear about your mum Steff. That really sucks. My heart goes out to you. I don't know much about leukemia but I really hope that your mum will be able to beat the odds and pull through.

[GaryG]

Steff: I am very sorry to hear the news about your mom. I hope you are able to cope the best you can even though there is no easy way to cope.   Please post updates when you can. I always look forward to learning from  your experience and wisdom.  The best to you both.

 

[LouT]

3 hours ago, Sheryl E said:

Catlady91, 

Well, I’m hoping you are wrong in the sclc, as that is what I have.  Mine was caught at stage 1 and I had a lobectomy.  Can’t say that your “worry” isn’t frightening to me now.  I’m trying to be positive and hoping I live through this but wut your grim thoughts I’m now wondering if maybe I won’t.  I’m glad your Mom is responding. 
 

Sheryl

Sheryl,

The only way to get through this disease is one day at a time.  Take what you have today and live it.  Worrying about the future has never kept anybody safe from any kind of harm.  All worrying does it to weaken your immune system, rob you of needed rest and keep you in a state of high tension.  None of those things are good for you.  Please take the word of your doctor and medical team and don't add credence to worries that others may have.  You're dealing with your case and your doctors are working on your behalf.  Stay strong for your own benefit and, like all of us, live each day to the fullest.  And remember...there are people here with years of survival under their belt and there is no reason you can't be one of them.

Lou

[Sheryl E]

Lou,

Thank you for your kind words.  I’m feeling a little sad tonight.  My chemo starts October 1st, and my doctor said as of now I’m cancer free because of taking part of my lung out.  Margins were clear and lymph nodes clear.  Chemo for trying to kill any cells that may remain.  He said I have 85% chance and with having chemo that will add to the percentage.  I’m praying he’s right. 
 

Sheryl

[LouT]

Sheryl,

Your doctor said you are cancer free (as mine told me after taking out part of my lung).  That is a reason to celebrate and breathe a sigh of relief.  You weren't diagnosed as Stage IV with limited survival opportunities.  You have clear margins and lymph nodes.  Heck, your situation sure sounds like mine.  But, I'm planning on living and celebrating every day of my life until something makes it so I can't anymore.  

Perhaps you need to think differently.  Maybe if you imagined your cancer was found at Stage IV, then someone said "perhaps it is Stage III", then further diagnosis was Stage II and finally the diagnosis was the one you received with the recommendation for surgery as a curative approach.  Maybe then you'd be grateful not to be facing the other three scenarios (I know I am).

I understand that this disease brings us face to face with our mortality, but you are neither dead nor dying.  Please do anything that will bring a bit of joy in your life; watch a movie you laugh to, visit a friend, call someone who means a lot to you...in short, enjoy the life you have.  If you're so worried about losing it perhaps you should be more open to celebrating it while it is here.  
 

This isn't easy, but you can do it.  We all fought this and others here helped me through, let us help you too...

Lou

[Sheryl E]

Lou,

You are so right.  I was in a good place but it seems it doesn’t take much to bring me down.  I need to get better with that.  I feel very blessed, and I do celebrate that with my husband and kids/grandkids.  Sometimes I just get so scared.  I have read your story and it’s inspiring for sure!! I’m so nervous about chemo and I just need to work through it.  Thank you again for your message.  You don’t know how it’s made me feel so much better!! I just have to listen to my doctor and try to enjoy every moment.  Thank you Lou, God bless you! 
 

Sheryl

[Tom Galli]

Sheryl,

Every percentage point counts to avoiding a recurrence. I really hope you are "one and done."

Stay the course.

Tom

[Lisa Haines]

Please try to focus on now and her good response, 

don't let the what if's consume you.

I  hope you will join the Caregivers Zoom meeting.  I absolutely Love the survivors meetings and love talking to others-it's so inspiring.

It's also pretty rare for NSCLC to mutate to SCLC, it's a thought I've never worried about, I tend to be very upbeat and positive.   I may have Stage IV NSCLC, but I'm determined to beat if.

I' also suggest seeing your own medical team and ask for help with your anxiety.  It's not good for anyone and I'd bet your Mum senses it.   Just LOVE 💘  her and be there, that's the best medicine. 

[Sheryl E]

Tom,

Thank you!! I hope so too!!

Sheryl

[D iane]

On 9/20/2020 at 6:10 PM, catlady91 said:

Thanks Judy; I'm glad to hear that your response to treatment is also positive. I try to live for the now but I can't help worrying about the future especially as my mum is a former smoker and small cell is the most strongly associated with smoking. I've tried to find info about developing SCLC as a second cancer after NSCLC but there doesn't seem to be many studies. Even when caught early small cell has a poor prognosis 😢. 

You are going way out there with this thought process.  While I empathize and can validate it after what you went through, to my knowledge, it would be rare that she develop another primary lung cancer.  More likely, the prior type cancer would recur.