Paraneoplastic SCLC

Portal Forums Q&A, Ask Us New Questions Paraneoplastic SCLC

This topic contains 5 replies, has 2 voices, and was last updated by  rwh37011 2 weeks ago.

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July 11, 2017 at 12:44 am  #1291040    

rwh37011

Hi Janine,
I don’t think I fully understood your response, but this is probably down to my ramblings which I am not sure made sense. If I can start again. I have had to start a new post as I seem to have some technology problems, I am not very competent with IT!. The situation I am in is that I have small cell lung cancer which initially was limited but recently shown spread to my liver. Prior to my limited diagnosis I was going back and forward to the doctors for over two years. They investigated me mainly for GI symptoms, but I also had other non specifics such as sweats and fatigue. Now this may or may not be related to my final diagnosis. Initially I would think that symptoms covering more than two years would definitely not be connected to a small cell lung cancer diagnosis. But what made me think a bit more about it was some other people with slightly similar experiences, but the timescales made no sense.
JimC pointed me in the direction of an interesting post by Dr Gadgeel which talked about paraneoplastic syndromes and they seemed to be common in SCLC, which surprised me as I had never heard about them. But it did make sense and it talked about them preceding the diagnosis of sclc. When I looked further I found there is quite a lot of information on them and also a protocol for screening if they are suspected. I don’t think that this would be the same as the low dose programme. In fact, due to my fatigue and some symptoms I was ineligible for the low dose programme. The protocol for suspected paraneoplastic talked about PET or CT scans every 6 months for up to 4 or 5 years.

Continued in next post…..

July 11, 2017 at 12:46 am  #1291041    

rwh37011

Continuation……

That is the bit which confuses me is the length of time screening should go on for. In fact my doctor told me, after a year of symptoms, that I wouldn’t be sitting in front of him if there was a lung cancer underlying, and as for small cell, that would probably have killed me. But I suspect that there must be some science behind the screening for sclc when paraneoplastic is suspected and from my uneducated position it sounds like years of symptoms of sclc is possible. I know nothing about how lung cancer grows but wondered if there is an element of there being a precancerous phase where symptoms are presenting before the main growth takes off. Sorry for such a long post and I hope I have not rambled as much as I think I may have.

Sincerely

RW

July 11, 2017 at 10:58 am  #1291044    
catdander forum moderator
catdander forum moderator

Thanks for your added info. I combined your 2 most recent threads and you can post at the bottom of this page in response. Don’t worry about about the long post I know you’ve tried to make it as succinct as possible and I do ramble a bit.

The short answer is no, there is no known connection between sclc and symptoms that appear prior to the growth of a malignant tumor. Also, it would be quite rare for a sclc to take a year to grow to a size that causes symptoms. But cancer can do anything. Many oncologist describe every person’s cancer is a unique disease.

When speaking about precancerous phase it’s usually meant that abnormal nonmalignant cells have been found that have the ability to change into malignant cells. It’s something that can be seen but usually doesn’t have symptoms unless the symptoms are from a nodule of abnormal cells pressing on a structure that causes the symptoms.

“Small cell cancers can sometimes act like miniature glands. They can secrete a range of chemicals and hormones. These substances can make a person sick in and of themselves. Doctors call this paraneoplastic (par-uh-knee-oh-plas-tick) disorder or phenomenon.” http://www.health.harvard.edu/cancer/small-cell-lung-cancer

Dr. West responded to a similar question, “…it’s reasonable to check for any evidence of a cancer when a condition that could be a paraneoplastic syndrome (coincident with a cancer) is detected.” http://cancergrace.org/forums/index.php?topic=1727.0

Finding lung cancer because of a finding of paraneoplastic is truly a rare case. Dr. West has spent the good part of the last 20 years studying and treating lung cancer. He went on to say, “I have never encountered a patient who was found to have a cancer by prior diagnosis of a paraneoplastic syndrome, except for multiple blood clots (the risk for developing blood clots is 4-6 times higher in someone with cancer than in other people).”

I hope some of this helps.
Sincerely,
Janine

July 12, 2017 at 8:21 am  #1291052    

rwh37011

Thank you for such a comprehensive reply and also adding the experience of DR West. Interesting to read that the tumor can act like a miniature gland. I don’t suppose anyone would know what size of tumor or number of cells would be necessary to make up a “miniature gland” that would cause the person to experience the effects of the hormones?
It is a truly amazing thing you do here and I hope you all know just how much this means and how valuable a resource it is. I just looked up Dr West and realise what a top oncologist he is! it is something special he set up.

Sincerely

RW

July 12, 2017 at 12:27 pm  #1291061    
catdander forum moderator
catdander forum moderator

RW,

We are indeed lucky to have Dr. West and the many other specialists he’s recruited who give from their very busy lives to educate us lay people so we can be a part of the team making the tough decisions. Maybe my favorite part is that all these doctors are taking part in social media to educate and consolidate information for and from patients with the express intent of giving better care. That was unheard of 10 years ago. I remember in 1990 I looked up information online about a medical issue and my doctor was flabbergasted I’d do such a thing as try to educate myself about a disease, and from the internet of all places. We still have a long way to go before most of our healthcare pros encourage these practices but it’s exciting for me to just be in the front office of this forum where the goal is to educate.

It’s believed that a tumor can produce paraneoplastic syndrome it’s not produced by just lots of circulating tumor cells so there needs to be a tumor, a place where the cancer cells have collected to form a tumor. There isn’t an answer to the question of how many cells there must be to cause paraneoplastic syndrome but we do know it’s extremely rare to find cancer because of the syndrome, suggesting a tumor needs to be large enough to have caused cancer symptoms of its own and certainly large enough to be easily seen on a scan. Dr. Weiss stated, “The tip of a pen is the size of more than ten billion cells.” http://cancergrace.org/lung/2010/04/05/an-introduction-to-lung-cancer/#more-3750 So we’re talking about 10s of billions of cancer cells.

We’re still learning about cancer. Unfortunately there’s more we don’t know than what we do know. There’s a reason it’s known as the emperor of all disease.

Janine

July 13, 2017 at 6:30 am  #1291072    

rwh37011

Thank you for all this information and providing this reliable and informative resource. I am sure it makes a difference to so many.

Sincerely

RW

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