Newly diagnosed Poorly Differentiated Small Cell Neuroendocrine Carcinoma (right lung); likely Stage IV

[Lahalsa]

I have a >5 to <7 right hilar mass, determined to small cell.  I've had CTs, MRI/Brain, and PET scan, and while there does not appear to be any obvious distant spread, my tumor is invading the mediastinal space between the lungs and I have pleural effusion, which the radiologist stated was "likely malignant," which would put me in Stage IV.  My case is being staged this Friday morning. I found out that I "likely" had lung cancer 5 weeks ago; this week I'm looking at a Stage IV SCLC diagnosis, starting systemic chemo treatment next week, and likely not surviving long enough to see my grandkids graduate high school. Pretty overwhelming.

Been coughing since February/March...but wasn't bad and didn't really both me.  Cough worsened just before I left on my 2-week motorcycle trip, and about mid-trip, I started to have difficulty breathing/shortness of breath.  The minute I returned, I contacted my PCP and she referred me for a CT - took 2.5 weeks to get in to get one - and the rest is history. 

Shocked, wondering what chemo is going to do to me, wondering how I'll manage work and planning for my potential demise in whatever time I have left.

[LouT]

Lahalsa,

Welcome to the club nobody wants to be a part of.  The first thing I can tell you is that lung cancer is not the automatic death sentence it once was.  So please take everything one step at a time.  Our forum is filled with survivors some were diagnosed many years ago.  You'll soon be hearing from others who were also diagnosed at Stage 3 and 4 and you should ask any and all questions you have on your mind.  Nothing is ridiculous or off-limits.

Next I'd like you to take a read on a blog titled "10 Steps to Surviving Lung Cancer; from a Survivor".  It can be found here.  BTW, the writer is still here 18 years after a Stage 3 & 4 diagnosis.

Keep posting and coming back.  You're not alone now.

Lou

[Laurel77]

Hey Lahalsa!

Oh my goodness, I know your fears all too well, as everyone here does. The initial diagnosis is terrifying. The waiting is excruciating, the tests, the scans, the worry, the HORROR ...ugh. ..we've all been there. Sending a huge hug to you!! You WILL get through this. Each day that passes will bring you more resolve to fight the fight, and fight you must.

KNOW, that cancer treatment has come farther in the past 5 years than it has in the past 50. Also, as Lou said, many people here were diagnosed with stage 3 and 4 DECADES ago and are still going strong. Cancer is NOT a death sentence.

 I am recently diagnosed myself with stage 3 lung cancer which spread to the nodes near my collarbone. The thought of starting chemo and radiation scared me even more than the cancer did. Now, it has just become my new routine. It is not as bad as you fear, and I had myself all worked up over it for nothing. For any side effect you may (or may not) get, there are meds and tips to make you feel better. Last Tuesday was my first chemo treatment, and I am 12 days into the daily radiation treatments. The first two days after chemo were fine. The 3rd, I felt some fatigue and nausea. By the 5th day, I was back to work.

I think you will find, as I did, that the care teams are absolutely wonderful people, and will do everything they can to help you through this. We will be here for you as well!!

Fight the fight, darlin'. You've got this!

Peace and love to you,

Laural

[Lahalsa]

Thanks Lou and Laurel - I really appreciate it!

Reading others' stories on here has inspired hope - especially since my research on SCLC with malignant pleural effusion says I'll be dead in 3-12 months. THAT had my chin in the dirt for a few hours...but I am ready to fight...I have PUSHED my "Team" (who knew I'd be getting a team) to get me into every test absolutely as fast as possible regardless of where I have to go to get it (I've been to 3 different cities for testing) - hence, the reason I was able to get it all done so quickly - and now I'm begging them to start my treatment NEXT week (so funny, only people on here would probably understand someone BEGGING for chemo).

I am ready to fight - happy to hear about rapid advances in treatment - and - that maybe this is not an automatic death sentence - or - at least not such an immediate death sentence! I ride an 850 pound Harley Davidson (by myself) - my husband and I ride our bikes every weekend and just rode 250-300 miles Sunday - it's hard for me to imagine that I won't be here in a few months - it doesn't even make sense!

So, instead of thinking about how long I have before I die, I'm going to focus on fighting.  Thanks for sharing your chemo experience Laurel - of course I'm super nervous about it - still working full-time of course - I've just been taking sick time as needed for tests/procedures thus far...hoping I can continue working - even through treatment - just taking a day - or days - as needed for any ill effects. I've had long hair my whole life - it's 3/4's of the way down my back - and I know it's vain, stupid, and a tiny thing in the grand scheme of things, but I'm already grieving the loss of my hair (how long till that happens?).  

I appreciate your comments Lou and Laurel - thank you for taking the time to greet and educate/share with me!

[Justin1970]

Hi lahalsa 

I'm really sorry you have to be here, as the others have said it's not the automatic death sentence it once was and we have all felt like you are in the beginning, please stay as strong and positive as you can it will help, I was worried about the chemotherapy and radiotherapy but it wasn't as bad as I had made it in my mind I was also worried about losing my hair but it just thinned out, you will get through this and everyone on this site is with you and praying for you 

Take care Justin x 

[LilyMir]

Hi and welcome to this wonderful group. The others gave you great advice but I will add a recommendation to try and rest so you give your body healing time. If you can have it or can afford it, consider taking medical leave so you can focus your energy on healing. This may also protect you this winter as COVID surges while your immunity is likely to be compromised due to chemo. Stay positive and hopefully you hear good news soon about your treatment working. Best wishes.

[Laurel77]

Lahalsa, times have changed, and not all chemo will cause you to lose your hair. I am currently on Cisplatin/Alimta and was told by my docs that this will not make my hair fall out. Bonus. It is not stupid or vain to worry about losing your hair, it is just another horror and life changing experience this wretched disease lays on you. Of course we would all choose life over hair, but still. WTH, right?

Personally, I had a serious issue with anger over this happening to me in the first place. I was (and still am some days), just plain pissed off about it. I want to be who I was before cancer, and the fact that I am not is quite upsetting, to say the least. However, the fight against this beast is first and foremost, so I direct my anger at cancer, and look forward to the day I can eliminate it from my life.

You have many more road trips in your future.  Let's kick some cancerous *ss, eh? 

[LilyMir]

Re. hair, it is not vain, we live in a society that often judges us by our hair and looks so it is a big deal in the beginning. As Laurel77 said, not all chemo makes you lose your hair. Mine just thinned (so much) but to an outside observer looked normal and people would not know I was very sick! However, my locks seem to have lost their bouncy curl and are now much flatter, frizzier/damaged and merely wavy. I don't feel myself still but then again lung cancer changed everything about my life. Hair is not remotely a priority for me but I still miss my curls. On the bright side, I coloured my hair for the first time in years and it felt good. Now if I could only find a hair salon that can cut and style my hair in open air!

[Pstar]

Hi Lahalsa. I too was diagnosed with Sclc in the upper right lung with a 1.1 cm nodule and 2.2 cm hilar adenopathy. Biopsy showed other lymph nodes as negative for malignancy. I was staged as 3B but limited stage as was only in right lung. I had 4 rounds of chemo (carboplatin and etoposide) and started 30 sessions of daily radiation with my second round. I received a steroid and anti nausea meds before my chemo and didn’t experience any ill side effects besides fatigue and hair started falling out so shaved my head. I too always had hair down the middle of my back but losing it is a small price to pay to continue living. It is growing back…different color and curly! My nodule and hilar lymph have shrunk and I am considered stable now. I was diagnosed in Nov 2021, started treatment in Dec and completed chemo and radiation in Feb. I have CT of chest/abdomen and mri of brain coming up Oct 18 and hoping for continued stability. As LilyMir said, if you can take some medical leave do it so you can rest and stay strong to fight this. I also ate lots of fruits and veges. You have got this and we are all here for you. Stay strong!

Pam

[Tom Galli]

Lahalsa,

Here is information about treatments for small cell lung cancer (SCLC).

As an Extensive-stage patient, radiation may not be offered, but I'd ask. Limited-stage patients get fractional general radiation along with chemotherapy. But this type of radiation may not be able to cover all your metastatic sites. We have a form of radiation called stereotactic ablative radiation therapy or SABR. Please ensure you have a consultation with a radiation oncologist who is the expert in this method of treatment. Here is information on radiation used to treat SCKC. SCLC often moves to the brain so ensure you ask your radiation oncologist about a brain scan or MRI to rule out what we call brain mets.

The normal course of chemotherapy treatment is 4 rounds of a platinum based drug (cisplatin or carboplatin) paired with etoposide. The time between each round varies based on the dose and extent of metastatic cancer. Your medical oncologist will direct your chemotherapy. 

An exciting new development in SCLC treatment is the use of immunotherapy. Often an immunotherapy drug is paired with platinum based and etoposide. Be sure to ask if immunotherapy is and available treatment method. When immunotherapy works, it works exceedingly well.

Stay the course.

Tom

[BridgetO]

Hi Lahalsa and welcome! I'm glad you found us; there's a lot of hope here. Now, about hair. I'm not saying don't grieve the loss of your long hair.  Of course you will. But alongside that, you can look at it as an interesting experience. My lung cancer was stage 1a so I didn't have any chemo with that. But I did have a prior non-lung cancer for which I had hair-destroying chemo, plus radiation and a great big surgery with a week in the hospital. I approached this all as an interesting (if sometimes awful!) experience. I'd never been in the hospital as an adult for any length of time, and I'd never been hairless before.  

Prior to my hair loss, I went to a wig shop (low end, not high end), with a friend. I tried on a lot of wigs and we had a good giggle. I boughta wig that I thought was wearable, though it didn't replicate my hair at all. Later, I went to a local cancer center shop where I got a free wig-trim and saw a great selection of hats.  The hair started falling out right on schedule (can't remember what the "schedule"was, but the loss was as predicted). It was weird  losing clumps of hair, so I got a very short buzz cut- another new experience.

I wore my wig a couple of times  but I really wasn't comfortable in it, so I went back to the wig-trim place and bought a couple of  cute hats, plus a soft cotton one to sleep in because my head got cold at night. I also got some free hats and scarves from various places and learned to do some interesting scarf tying things to decorate my head. I decided hats and scarves were , for me, more comfortable than the wig, and I really got into developing a collection of them.

I also found that it's a lot simpler to go swimming with no hair! When mine started to grow back I kept it shortish for a long time. In fact it's just now growing out during the pandemic, since the pool was closed and I didn't wan't to risk going to the hairdresser anyway.

My point is, there's more than one way of looking at things and you can look at things from different perspectives at the same time. I sometimes thought of it as traveling through a different country, one that I really didn't want to be in, but there I was and there were interesting (if not always pleasant) experiences to be had.

You will find your own way through this (the hair and the whole cancer experience) and there's lots of support here.

Bridget O

[Karen_L]

Yeah, Lahalsa, according to the stats I'm going to be dead any moment now. Or maybe I should have died already? Who knows-- my oncologist refuses to discuss that with me because research and treatments are progressing so fast. I looked recently at revised NCCN algorithms of symptoms and treatments and actually laughed out loud at the stats there. As long as I know people with Stage 4 lung cancer who have lived good quality lives for 16 years, I say phooey on the statistics. Today  I'm figuring out how to live a bright tomorrow. I haven't gotten there yet, and I'm not being particularly graceful about it, but damned if I'm going to surrender the things I love to stupid cancer. 

You might be interested in some NCCN patient info and a webinar about SCLC: https://www.nccn.org/patientresources/patient-resources/patient-webinars/patient-webinar-small-cell-lung-cancer

They also have an algorithm of treatment protocols for medical professionals: https://www.nccn.org/guidelines/guidelines-detail?category=1&id=1462. I've found it takes a bunch of careful reading and research to go through those. Perhaps you'll be more up for that a little down the road, when you're a little deeper into The Whole Thing-- I know it took me a while, and it was best not the force myself to take on more info than I was ready for. 

(The NCCN is the National Comprehensive Cancer Network, "a not-for-profit alliance of 32 leading cancer centers devoted to patient care, research, and education. NCCN is dedicated to improving and facilitating quality, effective, equitable, and accessible cancer care so all patients can live better lives.")

Thanks for being here-- it's the best lung cancer group on the web IMO.

Karen