father has SCLC

[ashleybart]

hi all,

my dad was recently diagnosed with stage 3 SCLC. i'm truly devastated. he is my best friend and i would do anything for him. i'm here because i'm looking for advice on how to best support him through this journey. i'm already having concerns with the kind of care he is receiving. he was initially told by his pulmonologist that there is no chance for remission with SCLC because of how aggressive it is and that treatment was used to slow down the progression of the disease. he told my dad he could have a few months or he could have a few years. that doctor referred him to a cancer specialist who is now telling my dad that there is a chance for remission and he could be with us for 5 years. the cancer has yet to metastasize however my fathers treatment plan seems highly aggressive. he has 3 spots on his right lung with the largest being 15mm. the plan is for him to do a total of 6 weeks of treatment over a 12 week period. the on weeks he will receive 5 rounds of radiation and 3 rounds of chemo. once that is over the doctor will perform radiation on his brain in an effort to "zap" any cancer cells that may not be visible on an mri. i asked my dad what stage of stage 3 he has and he said the doctor didn't say. this doctor also told my dad he would be able to drive himself to his treatments because his is an otherwise healthy person. i don't believe anyone would be able to do this. my dad won't get a second opinion. i've already told him i will support him in whatever he chooses to do even if that means no treatment at all. i just want him to be as informed as possible but in the end this is his battle and my job is to be there for him with patience and understanding.

i know he is finding comfort in talking to me about everything because there are some things that i understand. not because i have or have had cancer but because i have chronic health conditions and they can be pretty brutal to treat. i know the frustration of navigating a team of doctors and having all of them present different opinions and treatment options, being poked and prodded like some sort of science experiment, the endless frustration, and the back and forth between emotions that are hard to describe. it's lonely but after he told me of the diagnosis we had a long talk and he told me he felt so much better about everything. there are things that i'm going to understand better than the rest of my family but this is also so foreign for me. 

my questions are does this treatment plan sound crazy or realistic? if you are a parent with cancer what are things your child has said or you wish they would say to help you in your fight? when do you wish they would just stay quiet and listen? i appreciate you taking the time to hear my fathers story and my concerns. any advice would be greatly appreciated.

[LUNGevityKristin]

I'm so sorry to hear of your dad's diagnosis.  The LUNGevity.org website is filled with great information.  It looks like the cancer specialist is following the standard of care for limited stage SCLC https://lungevity.org/for-patients-caregivers/lung-cancer-101/treatment-options/treatment-options-for-small-cell-lung

To give you more information, here is Lung Cancer 101 https://lungevity.org/for-patients-caregivers/lung-cancer-101

There are also free supportive services for you and your dad if you feel like you need to connect more than on the forum.  The Lung Cancer HELPLine can provide assistance with ways to cope, manage stress and anxiety and even provides local resources and financial resources.  Then there are also LifeLine Mentors that will connect with patients and caregivers one on one.  

As far as driving to treatments, with my mom's radiation, the fatigue was cumulative.  So in the beginning she was totally fine but towards the end she was tired.  There are different procedures in place right now than usual with Covid-19 and some facilities not allowing additional people in the building.  Please keep us updated on how your dad is doing.  When does treatment start?

[MyWifeSCLC]

Hi Ashley .. I'm really sorry to hear about your dad. This forum is really good for support. Just ask questions or tell us what you or your father is going through and someone will respond.

You might begin posting in the Small Cell group where those of us with SCLC or having family members with it tend to post.

My wife is stage 3 SCLC and she finished up her first-line treatment several weeks ago. You are welcome to read my posts or ask me something directly (or both). I really hope things go well for your dad.

Steve

[Steff]

Ashley,

My deepest sympathy for your dad's diagnosis.  This is a scary time.  I understand how you feel  - my mom/best friend was diagnosed with NSCLC about 4.5 years ago.  The past 4.5 years have been a roller coaster, but she is still here and living her life.  There is hope after a lung cancer diagnosis.  While I don't have an opinion either way about your dad's treatment plan because I don't have personal experience with Small Cell LC, I do know that most treatment plans are aggressive ones since SCLC can be so aggressive and tricky to treat.  The good news is that docs are finding tricky treatment options to battle against it, especially in the past few years.  Also, rather than hearing a numerical stage like stage 3a or 4, you will likely hear limited or extensive stage.

My advice as a child who acts as a caregiver and/or care advocate is to build your knowledge about your dad's specific cancer and the treatments that are being recommended.  Kristin referred you to Lung Cancer 101 on LUNGevity's website - that is a great resource.  Their website also has checklists of questions to ask docs during various phases of diagnosis and treatment - I used them during my mom's 1st lung cancer recurrence and they were very helpful.  I have access to my mom's online medical chart.  Although I have attended most major doctor appointments, I can't now due to COVID, so I rely on her online medical chart to keep up to date.  There is so much information thrown at you in early appointments that I hope your dad is able to take someone with him to appointments or have someone on speaker phone.  Another piece of advice is no matter what role you play in your dad's cancer battle, remember that you are still his daughter.  Your relationship will evolve with him through this process, but there will be times that he needs you as a daughter and you will need him as a daddy.  Finally, people will tell you to be sure to take care of yourself (I HATE that), but you need to do what you need to do.  I ran myself ragged while my mom is in treatment, both times.  It's what I felt I needed to do (I am the only child and my dad is disabled, so there is no one else to help) and I survived it, you will survive whatever you choose to do as well.  Take care of yourself as much or as little as you need to feel okay about this situation.  

Ohh and 1 more finally...we are here for you. These forums are a great place for information and support.  Steve had a great suggestion - check out the posts in the small cell group or of those who list small cell in their title...we have several caregivers and patients who have been recently diagnosed with SCLC and are navigating the system just like you and your dad.

Hope this helps a bit.

Take Care (or not!),

Steff

[BridgetO]

Hi Ashley and welcome. You've gotten some really good suggestions and information from the folks who posted above. I don't have personal experience with small cell LC, but I want to reinforce what Steff said about treatment being aggressive because SCLC is typically quite aggressive. I also like her suggestion of having someone on speaker phone at his appointments if COVID_19 prevents someone from being there personally. 

In response to the question of him driving himself to chemo and/or  radiation appointments, I would say it all depends. My NSCLC was Stage  1a, and I had only surgery for it. I did however, have two previous unrelated cancers. For one I had about 30 radiation treatments, and for the other about  the same number of treatments, concurrently with weekly chemo, plus 3 rounds of addtional chemo. I drove myself to all  those but the first chemo. It was especially helpful to have someone there for the first one, because the chemo pharmacist and nurse went over a LOT of information and also so we could see how I reacted to the chemo. I was fine afterwards. I never had the fatigue that some people develop with radiation.  The drive to my appointments was only about 4 or 5 miles. So driving myself was pretty easy. I can see that for some people, with long drives, difficult reactions to chemo, and/or radiation fatigue, it wouldn't b so easy.

 I wish your dad and  you all the best.

Bridget O

[ashleybart]

On 5/12/2020 at 1:39 PM, LUNGevityKristin said:

I'm so sorry to hear of your dad's diagnosis.  The LUNGevity.org website is filled with great information.  It looks like the cancer specialist is following the standard of care for limited stage SCLC https://lungevity.org/for-patients-caregivers/lung-cancer-101/treatment-options/treatment-options-for-small-cell-lung

To give you more information, here is Lung Cancer 101 https://lungevity.org/for-patients-caregivers/lung-cancer-101

There are also free supportive services for you and your dad if you feel like you need to connect more than on the forum.  The Lung Cancer HELPLine can provide assistance with ways to cope, manage stress and anxiety and even provides local resources and financial resources.  Then there are also LifeLine Mentors that will connect with patients and caregivers one on one.  

As far as driving to treatments, with my mom's radiation, the fatigue was cumulative.  So in the beginning she was totally fine but towards the end she was tired.  There are different procedures in place right now than usual with Covid-19 and some facilities not allowing additional people in the building.  Please keep us updated on how your dad is doing.  When does treatment start?

hey kristen, thanks for all of your help. my dad starts treatment on the 26th. he's still working at the moment while his temporary disability is handled. he will have a class on the radiation and chemo on monday. he hasn't been able to have anyone with him during his appointments but he said i've given him some good tips and ideas on ways to make sure all of his questions are asked and answered during the appointments. i'm glad i found this forum. i think it's going to help me and my dad tremendously. 

[ashleybart]

On 5/12/2020 at 4:09 PM, Steff said:

Ashley,

My deepest sympathy for your dad's diagnosis.  This is a scary time.  I understand how you feel  - my mom/best friend was diagnosed with NSCLC about 4.5 years ago.  The past 4.5 years have been a roller coaster, but she is still here and living her life.  There is hope after a lung cancer diagnosis.  While I don't have an opinion either way about your dad's treatment plan because I don't have personal experience with Small Cell LC, I do know that most treatment plans are aggressive ones since SCLC can be so aggressive and tricky to treat.  The good news is that docs are finding tricky treatment options to battle against it, especially in the past few years.  Also, rather than hearing a numerical stage like stage 3a or 4, you will likely hear limited or extensive stage.

My advice as a child who acts as a caregiver and/or care advocate is to build your knowledge about your dad's specific cancer and the treatments that are being recommended.  Kristin referred you to Lung Cancer 101 on LUNGevity's website - that is a great resource.  Their website also has checklists of questions to ask docs during various phases of diagnosis and treatment - I used them during my mom's 1st lung cancer recurrence and they were very helpful.  I have access to my mom's online medical chart.  Although I have attended most major doctor appointments, I can't now due to COVID, so I rely on her online medical chart to keep up to date.  There is so much information thrown at you in early appointments that I hope your dad is able to take someone with him to appointments or have someone on speaker phone.  Another piece of advice is no matter what role you play in your dad's cancer battle, remember that you are still his daughter.  Your relationship will evolve with him through this process, but there will be times that he needs you as a daughter and you will need him as a daddy.  Finally, people will tell you to be sure to take care of yourself (I HATE that), but you need to do what you need to do.  I ran myself ragged while my mom is in treatment, both times.  It's what I felt I needed to do (I am the only child and my dad is disabled, so there is no one else to help) and I survived it, you will survive whatever you choose to do as well.  Take care of yourself as much or as little as you need to feel okay about this situation.  

Ohh and 1 more finally...we are here for you. These forums are a great place for information and support.  Steve had a great suggestion - check out the posts in the small cell group or of those who list small cell in their title...we have several caregivers and patients who have been recently diagnosed with SCLC and are navigating the system just like you and your dad.

Hope this helps a bit.

Take Care (or not!),

Steff

thank you so much for all of your insight and sharing your moms story. i've mentioned to him that i would like to be on speaker phone for some appointments if he is willing or would like me to. i didn't even think about accessing online charts. he hasn't much information on the type of chemo he will be receiving or any as needed medications he will encounter along the way but i know i'm going to be familiar with many of them from my own personal experience with health problems. i do feel like i need to run to the rescue. his wife recently lost her mother. she was in a nursing home and after the lock down happened her mother basically shut down and passed so she has alot she is struggling with right now. it's good tho to be reminded that he will need me as his daughter and i'll need him as my dad. i want to help in anyway i can and be there for him. this is going to be tough but i appreciate from the bottom of my heart the support i'm receiving here. thanks again!

[ashleybart]

On 5/12/2020 at 10:27 PM, BridgetO said:

Hi Ashley and welcome. You've gotten some really good suggestions and information from the folks who posted above. I don't have personal experience with small cell LC, but I want to reinforce what Steff said about treatment being aggressive because SCLC is typically quite aggressive. I also like her suggestion of having someone on speaker phone at his appointments if COVID_19 prevents someone from being there personally. 

In response to the question of him driving himself to chemo and/or  radiation appointments, I would say it all depends. My NSCLC was Stage  1a, and I had only surgery for it. I did however, have two previous unrelated cancers. For one I had about 30 radiation treatments, and for the other about  the same number of treatments, concurrently with weekly chemo, plus 3 rounds of addtional chemo. I drove myself to all  those but the first chemo. It was especially helpful to have someone there for the first one, because the chemo pharmacist and nurse went over a LOT of information and also so we could see how I reacted to the chemo. I was fine afterwards. I never had the fatigue that some people develop with radiation.  The drive to my appointments was only about 4 or 5 miles. So driving myself was pretty easy. I can see that for some people, with long drives, difficult reactions to chemo, and/or radiation fatigue, it wouldn't b so easy.

 I wish your dad and  you all the best.

Bridget O

thanks bridget, i shared with him what you said about driving to treatments. he lives in a small town and the place where he will be receiving treatment is 45 minutes away. i imagine i'm going to move home in june after the first few weeks of treatment goes by. him and his wife both said let's see how the first week goes before we make a decision for me to move. i live in a different state than him but if anything i'd like to just spend time with him. with everything that is happening right now i'm currently out of work and i don't have children so i really don't have anything holding me back but i'm going to just follow his lead on it all and support him however i can. thank you for sharing your experience with me.