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small cell lung cancer

small cell lung cancer

Posted by ellarose on Apr 8, 2020 5:57 pm

Last November, I was diagnosed with small cell lung cancer.   It was diagnosed extremely early and the prognosis was very good.
I have finished six rounds of chemo and 30 of radiation and all of my scans have come back clear.  
Now I have a major decision to make.  The radiologist would like to do ten more on my brain.  He says it will increase my odds
for survival by 30% which I have to admit sounds wonderful.  However there are some risks involved...short term memory
loss and there is really no guarantees over exactly how much memory.  There is also early onset Alzheimers, decrease in mental function,
hair loss which could be permanent, behaviour changes, hearing loss...and on the list goes.
  I am wondering if anyone on here was given this option and decided to do the extra rounds of radiation...and what their thoughts on
it are now.
Ellarose

Re: small cell lung cancer

Posted by WestCoastSailor on Apr 8, 2020 7:49 pm

ellarose‍ 

I don't have a specific answer for you as I haven't had to deal with this question. Yet. But I have found a few people who have mentioned whole brain radiation - often for metastatic breast cancer but they may have some insight. I used the search term "whole brain radiation" which I believe is what you are dealing with. Correct me if I'm wrong.

JonM‍  Do you have any thoughts? I know your wife's experience is very recent but how has it been?

justDwilldo‍ lost her father a few weeks ago but I believe whole brain radiation was part of his treatment. She may have some thoughts. His radiation was palliative rather than preventative which it sounds like yours will be so there may be no comparision.

caroontario‍ has a thread over here (https://cancerconnection.ca/discussions/viewtopic/68/62042?post_id=296681#p296681) about it with some other links but we don't know if it happened or not...

And finally my absent friend Lianne_adminCCS‍  posted a link here from the Cancer.ca site (https://www.cancer.ca/en/cancer-information/cancer-type/metastatic-cancer/brain-metastases/?region=bc) dealing with the general issue of brain metastasis.

I'm sure others will chime in as they see the thread but there is some place to start.

Angus
My story: http://journey.anguspratt.ca

Re: small cell lung cancer

Posted by justDwilldo on Apr 9, 2020 8:26 am

Hi ellarose‍ 

I’ll start by telling you that my Dad hasn’t passed away, but is in hospice and the end of his life is certainly near. Dad was diagnosed with stage 4 lung cancer on October 15, 2019. Unfortunately his cancer had spread to his brain and his liver. We immediately did radiation to his brain, 5 rounds, followed by 30 rounds to his lung. It was palliative radiation from the beginning so we weren’t expecting any miracles. We opted not to do chemo as the benefits did not outweigh the negatives of him being terribly sick and debilitated for a few of the months he had left. In hindsight, it was the right decision. I’ll tell you the side effects that Dad experienced from brain radiation but please keep in mind he had 2 good sized tumours in his brain. He had some confusion, and a bright red sore spot on his head. He did not lose his hair. He experienced some brain swelling which prompted them to put him on dexamethasone, it’s a steroid and unfortunately, Dad became dependent on it. They typically do a slow taper when stopping the medication but it didn’t matter how slow the taper, he never did well without it again and by the time they decided to keep him on it permanently, he had suffered a few falls, pneumonia and several seizures. His first fall after brain radiation left him using a walker as he was never steady on his feet again. In September 2019 he and I walked 18 holes on the golf course with him carrying his bag so having him need a walker was devastating but he embraced it as he has everything on our journey. I’m not trying to scare you, I believe VERY strongly in the cancer doctors and I won’t lie, everything they told me about timelines ended up being true so I know they absolutely know what they’re doing. But I have to be honest and in hindsight, if I could go back, I’m not sure we would have done the brain radiation. The lung, absolutely. But maybe not the brain. The 5 rounds seemed to only hinder him but I don’t have a crystal ball so who knows where we’d be if we hadn’t done it. I try not to second guess everything, ESPECIALLY right now, with his end of life so near, but I know how much it helps to hear from others who have walked the path before you so that’s our story. Blessings to you, please stay safe. ❤️

Re: small cell lung cancer

Posted by WestCoastSailor on Apr 9, 2020 3:23 pm

My apologies justDwilldo‍ There have been too many deaths in my life lately... I'm glad to hear that you still have time with your father.

Angus
My story: http://journey.anguspratt.ca

Re: small cell lung cancer

Posted by Lacey_Moderator on Apr 9, 2020 3:31 pm

justDwilldo‍ 

Thank you for taking the time to share your Dad's experience to help others. 

Sending strength and support during this challenging time.

Lacey

WestCoastSailor‍ - Thank you for all your help connecting people in this thread.

Re: small cell lung cancer

Posted by Sheryl56 on Aug 28, 2020 11:18 pm

I have the same question.  I’m having surgery Monday, August 31 and then chemo and radiation.  I’m scared to have radiation to my brain.  I’m glad you are here.  Good luck to you and please let me know how you are doing.

Re: small cell lung cancer

Posted by WestCoastSailor on Aug 29, 2020 12:44 pm

Sheryl56‍ 

Hey, it's not all gloom and doom. There are some exciting stories around SCLC recovery too. There is no denying it is a tough road though.

I know the fear around brain mets all too well. And irradiation of the brain just seems scary. I mean it's supposed to kill the tumour right? What is stopping it from killing other things? I have less fear than I had in the past though because I have gotten to know a few people who have had it. And there were no great personality shifts and while their thinking might have been slightly slowed, it wasn't discernible to the average observer.  Like many parts of cancer treatment there is a mental component to the disease. Often dismissed by oncologists who are dealing with the physical symptoms, there are other resources that can help address those challenges.

So gang, let's share some of the positive stories around SCLC. ellarose‍ , justDwilldo‍ , JonM‍  do you have updates to share with us?

Angus
My story: http://journey.anguspratt.ca

Re: small cell lung cancer

Posted by jorola on Aug 29, 2020 5:26 pm

Hi Sheryl56‍ 
I wanted to wish you well on Monday. I will be thinking of you.
Cancer and its treatments can be scary. I thank you feeling scared is natural.
Have you look at this information from the Canadian Cancer Society (CCS) regarding Small Cell Lung cancer?
Treatments for small cell lung cancer
Lung Cancer
You could also call the CCS at 1-888-939-3333 and speak to one of the great people there who might be able to connect you with some additional information on radiation to the brain. Of course I always encourage you to speak to your doctor as well. 
Other than radiation, was any other treatment planned for you after your surgery?
Do you have good family/friends support for after your surgery when you get home?
Again wishing you a very speedy recovery with excellent results! Please let us know how you are doing when you are up to it.
Live, Laugh, Love

Re: small cell lung cancer

Posted by caroontario on Oct 18, 2020 11:57 am

Hi ,
I'm so very sorry to have not read your post. Between Jan.and March we had 2 months with my young sister she lived far away and we only communicated on the phone.
She passed away from undiagnosed Lung cancer in early March . We had time for one visit . Soon after came covid and I kind of shut the world around me and did not check my emails.
I don't know if you went ahead with the Brain radiation but I can give you an update on my husband. He had the 10 treatments ( that would be last year around June), he did loose his hair but it came back slowly and not as thick but he's satisfied with it. During the first couple of months he did have slight memory lapse ,,like finding the right words but nothing extreme. He had nausea and is still taking Zofran for it. His memory is definetly back :) no major headaches he did loose a few pounds because early on he was often tired. But knock on wood the scans or MRI have shown nothing new !!
Please let me know what you decided to do.
Hope you are doing as well as possible !
Carole