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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 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

Re: small cell lung cancer

Posted by WestCoastSailor on Nov 3, 2020 5:14 pm

Thanks caroontario‍ for sharing your experience.

Sheryl56‍ and ellarose‍ 

How are things going? Are there other challenges that you are facing or do you have some wisdom from your experience to share with us?

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

Re: small cell lung cancer

Posted by ellarose on Nov 3, 2020 7:58 pm

I haven't posted on here for a while.  Things have gone from bad to worse.  In Feb. just before my last chemo, I began having abdominal and lower back pains.  No one seemed to pay any attention to me for months until an appointment with the surgeon who had done my rectal cancer surgery, five years before the lung cancer diagnosis realized how serious things were.  The appointment ended up with me being admitted and having emergency surgery the following morning.  It turned out that the mesh they had put in to repair some hernias had become tangled in my gallbladder, part of my bowel and the scar tissue from all the surgeries.  They removed the gallbladder, but found some small lesions and removed them to be biopsied.  Five days later a doctor came into my room and suggested I call someone.  They were cancerous.  At the time they were operating, they assumed it was the rectal cancer that had returned, so they didn't remove as much as they should have and closed me up.  it wasn't rectal cancer.  It is gall bladder cancer.  Three weeks later I was back in chemo.  The oncologist told me it wasn't curable, but it was treatable.  Still not sure what that is supposed to mean.  Truthfully, I think I am afraid to ask.  The chemo is done now and I am waiting for a date for the CT scan.  I have my follow up appointment with the oncologist next monday and I am terrified....I never did have the brain radiation...this took precedence.
 

Re: small cell lung cancer

Posted by Whitelilies on Nov 4, 2020 3:01 pm

ellarose‍ Hello and thank you for sharing with us all.......I am so sorry to hear of this "junction"....Yes, at times, asking for clear words or clear understanding may not be needed, at that very moment.....take in all you can.....and follow Doctor's orders.....period.....just do what you can, when you can.......We are all here for support.....(I know all about Rectal Cancer)....
Sending Positive Vibes your way....

Regards
Whitelilies

Lillian