SCLC

[Sheryl E]

I know that this is a death sentence.  I wish I had NSCLC, as crazy as that may sound.  I had my lung biopsy and that is what they said, small cell.  I am so scared and my head is spinning.  I only read on here about you all having NSCLC and have read about Small Cell.  It is  bad and I am so scared.  I see oncology on Monday.  

[LexieCat]

Oh, Sheryl, I can SO relate to how you must be feeling. I was really worried that my biopsy would turn out to show SCLC (it didn't), but that was what really scared me, too. So I'm sending a huge hug, which probably doesn't help all that much.

I was trying to prepare myself for the possibility mine would turn out to be small-cell and there are bits of progress out there in terms of treatment and research. I hope you're able to connect with a clinical trial or something.

The one other thing that comforted me when I didn't know what I'd be facing is knowing that the people here would have my back and support me through whatever comes my way. Hope you can join the Zoom call this evening.

[LUNGevityKristin]

Hi Sheryl,

Are you registered for the International Lung Cancer Survivorship Conference?  There is an entire session on Small Cell and where it is now, what advances have been made.  https://lungevity.donordrive.com/index.cfm?fuseaction=donorDrive.event&eventID=947

There are new treatments being approved for SCLC.  Don't lose hope!

[BridgetO]

Hang in there, Sheryl! Small cell is a rough road , but there are new treatments and I expect that there will be more coming down the road soon. Predictions about survival are pretty useless. My father-in-law had T-cell lymphoma and was told that no one had lived with it longer than 6 months. He got on a new treatment(  I think it was a clinical trial, but I'm not sure). He lived 20 years and died in his late 80s. He probably would have lived longer if he had followed recommendations to keep his diabetes under control. This was an inspiration to me when I was diagnosed diagnosed 9 years ago with a rare non-lung cancer that had a "dismal prognosis" . I'm still NED on that one. Don't give up hope. We're here to support you.

Bridget)

[MyWifeSCLC]

Hi Sheryl ... I am so sorry you were dx with small cell. As you have already noticed there are a small few of us with (or have loved ones with) SCLC. We will do our best to help you through this. Also, there are many on here with NSCLC that have much to contribute so hang in there.

After your Monday Onc consult, give us as much info as possible. Back in July you indicated your nodule was 1cm. Assuming nothing has changed, this may be good news as there may be a few more treatment options.

Steve

[Sheryl E]

Yes, pulmo said it was 10 mm, I guess that is 1 cm.  But I feel like it’s been forever and I’m so worried it’s gotten bigger or spread.  I’m trying to stay positive but it’s so hard.  Everything I read is so bad.  I’m really scared.

[Olivia]

Sheryl,

When my dad was diagnosed with SCLC in January, the onc deliberately told us not to go online and do any reading. He said they were not going to be helpful and by the time certain statistics are posted, they’re already outdated. I unfortunately didn’t listen to the doctors advice and went on Dr. Google anyways...I regretted that immediately. Inside, I started looking up “SCLC survivor stories”, which took me to some very encouraging articles and it ultimately brought me here. So now days, I stick with the Lungevity forum only. It’s much more productive and always helps my anxiety. Take care ❤️

[G.A.M.]

I, too, was worried about cancer spreading while I waited four months to start chemotherapy, @Sheryl E. My cancer, neuroendocrine carcinoma, is treated just like SCLC and the outcomes seem all over the place. I'm just doing what the Doctors tell me and try to have faith in that. 

Best, 

Glenn

[TJM]

Glenn

I also have LCNET and also have had trouble finding much good information...even from my oncologist.  I had my first scan after completing all treatment last Tuesday.  I get the results tomorrow.  My first real experience with "scanziety" and I dont like it!

I'll post the results tomorrow. Think you are the only other person on the forum with the same diagnosis.  I havent posted much lately because I havent had much to add to the discussions but I have been reading all the posts.  If I get any new info I will pass it on.

Peace

Tom

[LouT]

Sheryl,

I agree with your ONC...focus on the treatment plan and progress, not what has happened to others in the past.  So many of us here have "crossed the cancer barrier" where we could be diagnosed with another cancer and so there is always that thought in the back of our minds.  The important thing is to be in the present and for me it was the folks here that helped me to do that.  I encourage you to focus on the present as well.  This is where you are and you do not have an expiration date.  So, please keep your hopes up...take advantage of any and all options that your ONC thinks have value in your recovery.  Come here whenever you want and you'll find so many here to lift you up and support you.  

Lou

[G.A.M.]

Hey, @TJM

I am right there with you. I get a CT scan tomorrow to see if the chemo is working. I'm taking Xanax to cope with the anxiety of it all. I know it will take a few days to get the results and then the wait until I see the ONC to see where we go from here, though round #5 is already scheduled. The ONC told me before I started that the treatment was curative and not palliative, so I took those words to heart. I hope I'm not disappointed.

[Rower Michelle]

Hi Glenn,

The waiting sucks.  Here’s a little tip, figure out who at the oncologist’s office is in charge of scheduling, have a chat with them about the scanxiety, it’s real.  In my shop, surprisingly the schedulers didn’t understand this concept at all (yeah at a major academic center!!!!).  It seems that lung cancer patients get more scans than others and hospital staff don’t understand how difficult it is for us.     I bribed the schedulers with chocolate and Starbucks gift cards.   
 

Then there was some turnover with the schedulers so I was absolutely determined not to wait for results.  I spoke to my doc (hubby said more like commanded him) about the waiting thing and he put an order in the chart I am not to wait for results.   I get my scans in the early afternoon and meet with the doc the next morning.  I don’t know what he did behind the scenes but I am so grateful.

In my old life (BC) I would have said this was a demanding diva move, but in the cancer world it’s advocacy- you don’t get what you don’t ask for.  
 

I find it takes a day (or two) to settle down after results, not an immediate relief for me. 
 

Will keep you in my prayers.  Hang in there!

Michelle

 

[Sheryl E]

The agony of waiting is real.  Onc told me to get MRI of brain, did that a week ago, then Bronchoscopy was done Friday.  He said if those are clear then I need to see surgery for consult. If test are not clear then surgery consult should be canceled and I go back to Onc for plan B I guess.  I haven’t heard anything regarding results of either one.  Surgery consult is Thursday.  My family wants me to call for results but I don’t really want to.  I know that’s probably weird but it makes me sick thinking about calling.  I just live in fear with my phone by my side.  

[Sheryl E]

Not sure if I updated as it’s been crazy.  Got my lobectomy on Monday, was able to leave the hospital on Wednesday.  Had RO appointment today.  Just to talk about radiation to my brain. He said there is not a lot of clear data for someone who has sclc stage 1, so we will revisit and talk in three months.  Next appointment is Oncology.  I dread that one.  I have no clue what that is like.  They said they will be discussing my case with the tumor board.  Not sure what that means.  All in all appointment went well. Hope everyone is doing well tonight.

[GaryG]

4 hours ago, Sheryl E said:

 Next appointment is Oncology.  I dread that one.  I have no clue what that is like.  They said they will be discussing my case with the tumor board.  Not sure what that means.  All in all appointment went well. Hope everyone is doing well tonight.

An oncologist is simply a doctor who treats people with cancer. Nothing to worry about. A tumor board is a collection of doctors who specialize in different fields. For example a tumor board can be made up of an oncologist, a  surgeon, a radiologist and a pulmonologist.  They all examine your case and decide on a course of action. You are in effect examined by many specialists at the same time. That's a good thing.

[Babs]

Sheryl,

Ditto on what Gary said!  It’s a good thing to have a Tumor board.  The more the better. For now, just be glad that your out of the hospital and the surgery went well.  
 

Babs

[Sheryl E]

Yes, I feel good.  RO said if I agree he will do radiation to my brain but not enough data on stage 1 sclc.  So we will work through that.  He said they checked other “granulomas” in my lower left lobe and they were fine. No cancer.  So I had 1 cm nodule in my left upper lung, (surgically removed) Bronchoscopy came back clean, MRI clean, so yesterday was a good day.  Have a great weekend everyone.  

[LexieCat]

That all sounds like great news, Sheryl! You're in the best position I've run across for someone with SCLC. 

Yeah, tumor boards are terrific. In my field--law enforcement response to gender-based violence--we always promote multidisciplinary coordination/collaboration (police, prosecutors, advocates, health care professionals, etc.). Each discipline brings their own strengths to the effort and it helps ensure everyone is on the same page with regard to the best approach. When you're dealing with complicated problems--whether it's lung cancer, domestic violence, sexual violence, etc.--the more brains and tools that can be brought to bear, the better. 

Rock on!

[Sheryl E]

Thanks Lexiecat!  I have heard a lot of great things also regarding tumor boards.  You made great sense out of it for me.  Yes, I’m very hopeful but cautious in regards to the sclc.  They seem to think it’s completely treatable.