1. < Lung Cancer

Small Cell Lung Cancer: Let's connect

Posted by Merry, Alumni Mentor @merpreb, Jan 12, 2019

Most of the discussions about lung cancer has been about Non-small cell lung cancers. There are many sub-types of this that are included. But there is another type of lung cancer that needs to be discussed and that is Small Cell Lung Cancer. This aggressive form of lung cancer most commonly occurs in smokers. It usually starts in the breathing tubes (bronchi) and grows very quickly, creating large tumors and spreading (metastasizing) throughout the body.
Symptoms include bloody phlegm, cough, chest pain, and shortness of breath.
Treatment includes surgery (for small tumors) as well as chemotherapy, sometimes in combination with radiation therapy.
Lung cancers cells are sometimes classified by where they tend to grow.
There have been huge breakthroughs in lung cancer research of late.
Please join @margot69 and I in this new disussion.

Interested in more discussions like this? Go to the Lung Cancer Support Group.

B &PopKorhn | @popkorhn | Jan 8, 2020
In reply to @richcolleen "I was d diagnosed with stage 4 Malignant Neoplasm Of Lung Adenocarcinorm in the right Lung,..." + (show)
@richcolleen

I was d diagnosed with stage 4 Malignant Neoplasm Of Lung Adenocarcinorm in the right Lung, Nodules in liver and stomach. The right lung had huge Timor which had fluid in lining of lung. All cancerous. At the Mayo in Rochester they did scans and had to remove a quart of guild for breathing before they could start on how to treat after 5 days and seeing different options. Surgery and radiation was ruled out as was the once a month pill. I was put on Carboplatin, Pemetrexed, Pembrolieumab and Keytruda Immune therapy every 21 days.the 3 chemo tram eats shrunk the tumor almost in half and nodules have stayed stable. I got very sick for 4-7 days on the chemo treatments which took days to get back strength than back for another dose.April thru September than went on just the Keytruda. Had my last treatment 6th of January and on 27Th will have scan done to see what my next step will be. This is not beatable so I believe I will go for quality rather than quantity of life I’ve had left.
This diagnoses was a shock as i played pickle ball 5 days a week two hours and was active in swimming and walking and everyday chores. The first sigh of trouble when silvery meals on wheels I walked up three flights of stairs and couldn’t breath when got to top. Called my primary Dr who had me come in as I taught I had pleurisy. After X-ray, scan and blood work same day was told I had cancer and what was my choice. Biopsy had to be done and here at St. Cloud hospital (only place to have done) and couldn’t get me in for 3 weeks. Decided to go to Mayo and they had me in 3-4 days. They have been amazing. Trouble was driving 3 1/2 hours one way for treatments and if blood work wasn’t up to par would have to go home and reschedule.so know am getting treatments at the cancer center here in St Cloud. Back to Mayo every 3 months. Sorry about long post!
Colleen
.

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Thank you so much for sharing your story. My husband has just been diagnosed with small cell cancer in his right lung and liver cancer. Once we have a plan of attack, I will review your medications to see if they treat him with any of the same ones. I have not read good things about Keytruda but you would know more about how it worked for you. Wishing you well will your follow up on the 27th.🙏🏻

REPLY
1 reply
joangma | @joangma | Jan 8, 2020
In reply to @popkorhn "Thank you so much for sharing your story. My husband has just been diagnosed with small..." + (show)
@popkorhn

Thank you so much for sharing your story. My husband has just been diagnosed with small cell cancer in his right lung and liver cancer. Once we have a plan of attack, I will review your medications to see if they treat him with any of the same ones. I have not read good things about Keytruda but you would know more about how it worked for you. Wishing you well will your follow up on the 27th.🙏🏻

Jump to this post

i  just finished 5 lazier radiation treatments for lung cancer. in Madison U.W. HOSPITALthey found a cancer the size of my thumb nail.THEY HAVE 1 OF 3 ADVANCED RADIATION MACHINES IN THE WORLD. 1-IN JAPAN 1- IN LAS VEGES, AND 1- IN MADISON. this is the place to go, they are the best in the world.  after 5 treatments and 3 months later a xray shows my cancer shrinking and all gone-thank god.  those  are my only choice for this kind of cancer. hope i helped you with your husbands problem, i have also has prostate cancer , fixed w/ seeds in Sarasota fl. good luck,

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1 reply
joangma | @joangma | Jan 8, 2020
In reply to @merpreb "@popkorhn- Welcome to Mayo Connect. How awful for you and your husband, as if one cancer..." + (show)
@merpreb

@popkorhn- Welcome to Mayo Connect. How awful for you and your husband, as if one cancer isn't enough. I am a mentor for Mayo Connect Lung cancer group. Hearing that "you" have cancer is true shocker. Have his doctors discussed any treatments as yet? How is he feeling physically?
Here is some information about lung cancer spreads to the liver, which is very common.: https://www.verywellhealth.com/lung-cancer-spread-to-the-liver-2249263
I'd also like to ask how you are doing? Connect has a separate group for care givers which I think will help you immensely. You will need to take care of yourself as well and I hope that the love and caring that other caregivers share will help you too. https://connect.mayoclinic.org/group/caregivers/
I'd also like to invite @margot69 @lady1lake @cheris to join this conversation.
Please continue to reach out on this site so that we can continue to support you. Would your husband want to join us do you think?

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u.w. Madison has some great new machines, they have 1- of 3 in the world no chemo  radiation machines and a pet program that is one of the best in usa

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B &PopKorhn | @popkorhn | Jan 9, 2020
In reply to @colleenyoung "Hi @popkorhn (fun name), welcome to Connect. You'll notice that I moved your post to the..." + (show)
@colleenyoung

Hi @popkorhn (fun name), welcome to Connect. You'll notice that I moved your post to the Small Cell Lung Cancer discussion. I did this so that you can more easily connect with others living with SCLC like @margot69 @lady1lake @cheris and others.

What treatment is your husband on or had? How is he doing? How are you doing?

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Thank you Coleen for connecting us to the right group. These past two days have been a whirlwind of just confirming Pop’s primary tumor in his upper right lung ,yesterday from his PET scan results done on Monday. He was diagnosed December 18th with secondary liver cancer after having a Biopsy. The soonest we could be scheduled for a PET scan was January 6th.
After We received his Biopsy report on Monday ,I freaked out after doing some research. His Pathologist from the Biopsy concluded his liver tumor was a high grade neuroendocrine carcinoma, consistent with small cell. I sent the Biopsy report to a friend and other pathologist ,who recommended he see a neuroendocrine specialist at Moffitt, here in Tampa where we live. March 17th was the soonest Moffitt could schedule him with the Neuroendocrine oncologist. I told them that we needed to be seen sooner so they suggested he see aThoracic specialist. We have a January 22nd appointment with the Thoracic specialist. So you see, we are just getting started on this roller coaster ride. Any information and help is greatly appreciated.

REPLY
1 reply
B &PopKorhn | @popkorhn | Jan 9, 2020
In reply to @merpreb "@popkorhn- Welcome to Mayo Connect. How awful for you and your husband, as if one cancer..." + (show)
@merpreb

@popkorhn- Welcome to Mayo Connect. How awful for you and your husband, as if one cancer isn't enough. I am a mentor for Mayo Connect Lung cancer group. Hearing that "you" have cancer is true shocker. Have his doctors discussed any treatments as yet? How is he feeling physically?
Here is some information about lung cancer spreads to the liver, which is very common.: https://www.verywellhealth.com/lung-cancer-spread-to-the-liver-2249263
I'd also like to ask how you are doing? Connect has a separate group for care givers which I think will help you immensely. You will need to take care of yourself as well and I hope that the love and caring that other caregivers share will help you too. https://connect.mayoclinic.org/group/caregivers/
I'd also like to invite @margot69 @lady1lake @cheris to join this conversation.
Please continue to reach out on this site so that we can continue to support you. Would your husband want to join us do you think?

Jump to this post

Thank you so much. I am actually the wife, B, and my husband is Pop. As I replied to Coleen, we are just getting started and being seen at Moffit on January 22nd but researching any other group for a second opinion. I plan to reach out to Florida Cancer group here in Tampa where we live to see who else we can get an appointment with. I have read that having a secondary cancer in the liver, with lymph nodes involved would be considered a 4th stage cancer which is fast growing. This is why I am trying to get him in ASAP to get the right treatment to extend his life. From what I understand, through my reading, is this can be controlled but not cured. At the age of 74, we both know want to extend his life with some since of quality . Again, Thank you so much for these links. I will check them both out. B

REPLY
1 reply
2onlow8 | @2onlow8 | Jan 9, 2020
In reply to @popkorhn "Thank you so much. I am actually the wife, B, and my husband is Pop. As..." + (show)
@popkorhn

Thank you so much. I am actually the wife, B, and my husband is Pop. As I replied to Coleen, we are just getting started and being seen at Moffit on January 22nd but researching any other group for a second opinion. I plan to reach out to Florida Cancer group here in Tampa where we live to see who else we can get an appointment with. I have read that having a secondary cancer in the liver, with lymph nodes involved would be considered a 4th stage cancer which is fast growing. This is why I am trying to get him in ASAP to get the right treatment to extend his life. From what I understand, through my reading, is this can be controlled but not cured. At the age of 74, we both know want to extend his life with some since of quality . Again, Thank you so much for these links. I will check them both out. B

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You might want to get a 2nd opinion from MD Anderson Cancer Hospital in Jacksonville. Dr Vu there has been a great resource for me as a 2nd opinion dr.

REPLY
Merry, Alumni Mentor | @merpreb | Jan 9, 2020
In reply to @joangma "i  just finished 5 lazier radiation treatments for lung cancer. in Madison U.W. HOSPITALthey found a..." + (show)
@joangma

i  just finished 5 lazier radiation treatments for lung cancer. in Madison U.W. HOSPITALthey found a cancer the size of my thumb nail.THEY HAVE 1 OF 3 ADVANCED RADIATION MACHINES IN THE WORLD. 1-IN JAPAN 1- IN LAS VEGES, AND 1- IN MADISON. this is the place to go, they are the best in the world.  after 5 treatments and 3 months later a xray shows my cancer shrinking and all gone-thank god.  those  are my only choice for this kind of cancer. hope i helped you with your husbands problem, i have also has prostate cancer , fixed w/ seeds in Sarasota fl. good luck,

Jump to this post

@joangma - It's been awhile since we've spoken. How are you? I don't remember if you wrote what type of lung cancer it was or is it a metastasis of prostate cancer?

REPLY
Merry, Alumni Mentor | @merpreb | Jan 9, 2020
In reply to @richcolleen "I was d diagnosed with stage 4 Malignant Neoplasm Of Lung Adenocarcinorm in the right Lung,..." + (show)
@richcolleen

I was d diagnosed with stage 4 Malignant Neoplasm Of Lung Adenocarcinorm in the right Lung, Nodules in liver and stomach. The right lung had huge Timor which had fluid in lining of lung. All cancerous. At the Mayo in Rochester they did scans and had to remove a quart of guild for breathing before they could start on how to treat after 5 days and seeing different options. Surgery and radiation was ruled out as was the once a month pill. I was put on Carboplatin, Pemetrexed, Pembrolieumab and Keytruda Immune therapy every 21 days.the 3 chemo tram eats shrunk the tumor almost in half and nodules have stayed stable. I got very sick for 4-7 days on the chemo treatments which took days to get back strength than back for another dose.April thru September than went on just the Keytruda. Had my last treatment 6th of January and on 27Th will have scan done to see what my next step will be. This is not beatable so I believe I will go for quality rather than quantity of life I’ve had left.
This diagnoses was a shock as i played pickle ball 5 days a week two hours and was active in swimming and walking and everyday chores. The first sigh of trouble when silvery meals on wheels I walked up three flights of stairs and couldn’t breath when got to top. Called my primary Dr who had me come in as I taught I had pleurisy. After X-ray, scan and blood work same day was told I had cancer and what was my choice. Biopsy had to be done and here at St. Cloud hospital (only place to have done) and couldn’t get me in for 3 weeks. Decided to go to Mayo and they had me in 3-4 days. They have been amazing. Trouble was driving 3 1/2 hours one way for treatments and if blood work wasn’t up to par would have to go home and reschedule.so know am getting treatments at the cancer center here in St Cloud. Back to Mayo every 3 months. Sorry about long post!
Colleen
.

Jump to this post

@richcolleen- Colleen- Finding out that you have cancer is certainly time to be shocked! It's like being punched in the stomach and more. It sounds as if you handled this very well and are now bring treated. Please keep us updated!

REPLY
1 reply
joangma | @joangma | Jan 9, 2020
In reply to @merpreb "@richcolleen- Colleen- Finding out that you have cancer is certainly time to be shocked! It's like..." + (show)
@merpreb

@richcolleen- Colleen- Finding out that you have cancer is certainly time to be shocked! It's like being punched in the stomach and more. It sounds as if you handled this very well and are now bring treated. Please keep us updated!

Jump to this post

the va sent me to u.w. for the treatment of small lung cancer they have 1 of3machines in the world called a pet scan. it was the size of my thumb nail. i was told after you quit smoking get a xray to check your lungs so i asked my doctor, he still wonders why i asked for the xray. boy am i glad i saw that on tv. 5 treatments later the area has shrunk up and all cancer is gone. the va is now doing the follow up on the xrays, and i go in again in 2 months. that is one of the best hospitals in the world at thgis time. that new machine is wonderful 1-in japan 1- las vages, 1- uw MADISON. was i lucky. tell everyone you can about this machine, it looks deep in your bodtytissue, and able to find anythig. take care

REPLY
Moderator
Colleen Young, Connect Director | @colleenyoung | Jan 9, 2020
In reply to @popkorhn "Thank you Coleen for connecting us to the right group. These past two days have been..." + (show)
@popkorhn

Thank you Coleen for connecting us to the right group. These past two days have been a whirlwind of just confirming Pop’s primary tumor in his upper right lung ,yesterday from his PET scan results done on Monday. He was diagnosed December 18th with secondary liver cancer after having a Biopsy. The soonest we could be scheduled for a PET scan was January 6th.
After We received his Biopsy report on Monday ,I freaked out after doing some research. His Pathologist from the Biopsy concluded his liver tumor was a high grade neuroendocrine carcinoma, consistent with small cell. I sent the Biopsy report to a friend and other pathologist ,who recommended he see a neuroendocrine specialist at Moffitt, here in Tampa where we live. March 17th was the soonest Moffitt could schedule him with the Neuroendocrine oncologist. I told them that we needed to be seen sooner so they suggested he see aThoracic specialist. We have a January 22nd appointment with the Thoracic specialist. So you see, we are just getting started on this roller coaster ride. Any information and help is greatly appreciated.

Jump to this post

@popkorhn, that is good that further testing gave clarity that the tumor is in fact a neuroendocrine carcinoma. Many patients with NETs have shared that it can be a long journey to get a proper diagnosis. And knowing that it is neuroendocrine, you'll get the right treatment.

You may be interested in connecting with other members with NETs in the Neuroendocrine Tumors (NETs) group here: https://connect.mayoclinic.org/group/neuroendocrine-tumors-nets/

These discussions may be of particular interest:
- Newly diagnosed with NET in liver https://connect.mayoclinic.org/discussion/newly-diagnosed-with-net-in-liver/
- Anyone treated for NETs at Mayo Clinic in Jacksonville, FL https://connect.mayoclinic.org/discussion/patients/
- Typical Carcinoid Tumor in Lungs https://connect.mayoclinic.org/discussion/typical-carcinoid-tumor-in-lungs/
- Welcome to the NETs Group! Come say hi. https://connect.mayoclinic.org/discussion/welcome-to-our-new-group/

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