Partner (27 yo) recently diagnosed with SCLC

[yyg123]

Hi everyone. I wish I never had to write this, but my boyfriend who is 27 years old was recently diagnosed with extensive stage SCLC. He is a never smoker, former athlete, and had exhibited no symptoms until back pain a few weeks ago for which he received a MRI that showed the lesions. I'm wondering if there are any other young adult patients out there. He is having a tremendously difficult time as everything has been happening so quickly and he is so young and was previously so healthy. We were in the hospital for two weeks and he had a difficult time because all he saw were older patients and he just felt like it was so unfair that he is so young and had his whole life ahead of him, especially because statistically this diagnosis is quite improbable and rare. I am also having a hard time because we had just been talking about getting engaged (we've been together for five years) and to now be faced with the prospect of all our plans for the future not happening is tremendously difficult. Much strength and love to everyone else out there, it has been heartbreaking to see the pain, both physical and emotional, that my boyfriend has had to go through in the past few weeks. 

[Susan Cornett]

I know that others on this forum will reach out to you, but let me offer a bit of advice.  First, don't give up hope.  People are LIVING with lung cancer much longer than in years past.  When I was first diagnosed earlier this year, I looked at the statistics and mentally gave up.  But then I spoke with a member of the medical team at the oncology clinic who explained those stats to me like this: they are numbers.  They are a compilation of patients over the last 5 years.  They don't take into account age and overall health at diagnosis, whether a patient started treatment, finished treatment, etc.  Those stats also don't accurately reflect the advances in lung cancer treatments in the last 2-3 years.

Second, a positive attitude is everything.  I know it seems dark right now, but your boyfriend has his age and otherwise good health on his side.  We all have an expiration date; lung cancer just tries to speed it up.  As a patient, I had two options: curl up and wait for the disease to take me or get out and get on with my life.  I chose the latter and am making long term plans and enjoying each and every day.  

Please know that we all understand this diagnosis and what it means to the patients and family.  But also know that we're all here for both of you.  

 

[AZhikeryogirunner]

Hi yyg123,

I am so glad you have found this community. It has been a great resource for me and hopefully it will be for you and your boyfriend as well. I am a 35 year old, also a nonsmoker, who has lived a pretty healthy and active lifestyle. I too was diagnosed with lung cancer and had surgery this summer. I was also the youngest person in the hospital lung wing and I am the youngest person in my lung cancer support group. But for me, seeing that these older and more mature survivors are fighting and thriving through this awful disease gives me hope for my own future. I will include you and your boyfriend in my prayers so that he finds peace with his diagnosis and that you may both find a silver lining at this time. 

~Yovana

[Tom Galli]

Yyg,

I am one of those -- well let's say refined survivors -- who's been very luck to live long enough to have acquired a few lessons learned about lung cancer.  First, and most important, you can't let treatment take over your life.  I learned this the hard way because I fretted away three years of my life focused on little but treatment, depression, and misery.  I now know I have control over what I think and feel about lung cancer.  I can choose to bottom feed or choose to live in spite of my cancer and treatment.  So, go on with your lives.  Make plans, enjoy yourselves, be fulfilled.  Look at your BF's forehead every morning and if you don't see an expiration stamp, enjoy the day.

Second, if I can live, so can your boyfriend.

You'll have many questions about cancer stuff and this is a good place to ask.  The fact that so many of us are here ought to rekindle hope.

Next visit, if you care, let us know his treatment plan.  Doing so will allow folks who've had the same treatment to weigh in with their experience.

Stay the course.

Tom 

[Donna G]

Hello Yyg. 

So sorry to hear about your boyfriend.  You did not say but with a diagnosis of SCLC I imagine they did a biopsy to find that out.

He must have been sick to have stayed in the hospital for 2 weeks.  I hope he is better.  Have they set up a treatment plan?  I have a friend that

I met in a lung cancer support group about 18 years ago that was diagnosed with SCLC.  She had lots of treatment and I have talked to her just this

year.  She and her husband downsized and she was going through all that you do when your moving.  She has survived so it is possible.

You need a good positive attitude, good nutrition, and to keep hope because that helps your body heal.  This is tough but be with him, help him find

things to smile about, laugh about.  Keep us posted.  Feel free to ask questions.

Best wishes,  Donna G

[yyg123]

Hi everyone, thank you so much for the encouragement and kind words. He finished cycle 1 of cisplatin + etoposide and the plan is for 6 cycles total. He tolerated the first cycle pretty well I think, just a lot of fatigue. This week he has been on radiation therapy and will continue until he has completed 10 sessions each to the spine and brain. They are still concerned about his labs as there are some mets to the liver. I know the chemo and radiation are pretty standard treatments initially but where/ when do the variations in treatment plan lie between patients? And when is an appropriate time to seek a second opinion? 

[Tom Galli]

Yyg,

Good questions about when treatment gets switched up.

For those of us who cannot receive surgery, we received what is called the first line treatment and it is normally termed a "standard of care".  That means this care has been proven to have the most beneficial effect to the type of lung cancer for the most patients.  Your BF is receiving first line standard of care - chemotherapy (cisplatin and etoposide) and radiation.  The radiation kills the lung cancer cells and chemotherapy inhibits their further spread.  He'll have scans sometime midway through treatment and at the end of treatment to assess the effectiveness of this treatment.

All lung cancer is persistent and many of us have failed first line standard of care treatment.  So a second line therapy is administered.  Often this is only chemotherapy.  It may be the same type of chemo he is currently receiving if the scans showed a good effect on his tumors.  It may be a new recipe (new chemo drugs).  And, sometimes second line works.  Often it does not and the treatment proceeds to further care.  At this juncture, the intuition of the oncologist becomes important (my opinion).  There really is not a third line "standard of care" but there is third line treatment.  There could be adding a newly emerged drug to his current chemo recipe, joining a clinical trial, or another formulation.  Alternatively he may receive a different form of radiation called stereotactic body radiation or protein beam radiation.  Read about them here.

But, this speaks to your question -- when to seek a second opinion.  I'd definitely start seeking a second opinion after mid-treatment diagnostics half way through second line.  I'd want to find the oncologist who has the best intuition about devising an effective third line treatment.  Now this is my opinion.  You ought to seek others.

Stay the course.

Tom

[LaurenH]

Hi, Yyg,

My name is Lauren and I am the Digital Community Manager for LUNGevity. I'm glad you've already connected with some of our members. This community is made up of patients, survivors, caregivers, and advocates who have all been affected by lung cancer, so it's a great place to ask questions.

Please let me know if there is any specific support or resources that you need. We offer peer-to-peer support programs for survivors and caregivers and we have survivorship conferences all over the country that feature education sessions, the latest information in research and treatment, and the opportunity to meet other survivors and caregivers in person. Here is a photo of the survivors under the age 50 at National HOPE Summit in Arlington, VA, last May (pictured with Chris Draft, bottom row-center):