Living with lung cancer - Introduce yourself & come say hi

Welcome to the Lung Cancer group on Mayo Clinic Connect.
This is a welcoming, safe place where you can meet people living with lung cancer or caring for someone with lung cancer. Let's learn from each other and share stories about living well with cancer, coping with the challenges and offering tips.

I'm Colleen, and I'm the moderator of this group, and Community Director of Connect. Chances are you'll to be greeted by volunteer patient Mentors and fellow members when you post to this group. Learn more about Moderators and Mentors on Connect.

We look forward to welcoming you and introducing you to other members. Feel free to browse the topics or start a new one.
Let's chat. Why not start by introducing yourself?

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

@meka

Don't know how to share with everyone, will reply here. First, I really appreciate any connection with some hope. This all started for me as pre-op for knee replacement surgery, October first. Went from chest X-Ray to ct to PET scan to one biospy. Through all this I have had two candles knee surgerys, October 31, only knew because I called the Surgery Center myself, called my PC group to tell. As far as know go ahead, scheduled for Nov. 12, canceled the morning of. To this point I have called, messaged, been on healthevet .site trying to find out anything. No contact from any Dr. at all. Saw my psychiatrist for regular visit, vented for sure, biopsy was next day, she tried to intervene by calling my "group team", getting a promise that I would get results. Waited through Thanksgiving to Wed. after. Call that afternoon from a Josh at the clinic, "it is adenocarcinoma, but if you have have it, the best kind". Mind you, did not see or hear from any Dr until a retired Oncologist on December 3. That's where should be able cure, but must talk to the mystery "tumor board" at local hospital. Next was, you're complicated, see aforementioned surgeon in other post and his kind prognosis.
This is not a bash VA so much as for me and for someone with my mental health issues has made me only crasier!!! Not waiting around, have spent hours and hours on phone calls, VA health site, regional Hospital site, just Fri. Patient Advocate, Women's Program Manager, local and National. Asked and begged for independent opinion. They will not refer me out, they can't, and come back Mon. to the retired Oncologist again.
From own research I am gleaning it's been much more complicated from the first X-Ray on October first. Looking again last night, there are at least three sites, and we're deemed malignant, metastatic, NOT confirmed by VA radiologist though, so still previewing and I cannot see actual fell because some are from an outside providers and not confirmed by VA..
I guess Hot Line or one of my senators, on joy. Did make a pact with my Vet Center counselor, plus could not leave like that. Just would like a life of no life to live as long as possible. Coleen, understand this might not be posted. Just had to vent. Talk about trust issues!!!!!@

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@meka, this is the perfect place to vent and yes, your message remains posted. This is exactly what Connect is for. Cancer sucks and sometimes we just have to say it. It is also a place to get and give support, find hope and take small steps to cope better. I love the advice you got from @sakota and @merpreb. I can see that you have held on to their virtual hands and gathered strength from them. One day at a time.

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@meka

Merry, going to my Senator's office today, will sign release, and share story. Yesterday, Oncologist at VA said we could just radiate it. Asked for second opinion outside of our area. Said he can't refer me to Mayo, because they seem to think a second opinion locally, but would see about a referral to Minneapolis VA, which I know is not a cancer treatment VA. Trying not to be crazy, thanks!!!

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@meka good for you! Taking positive steps! you can have someone else make the referral? What about telling your senator this?

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@merpreb

@meka- I am so sorry that you have to go through all of this just to get a diagnosis and treatment. I'm literally at lost for words. First of all there are no "best kinds of cancer" and secondly there really aren't any cures, there are treatments. There are cancers that are virulent, aggressive cancers and very indolent ones-slow moving or not changed. And there is hope- we are all here as survivors! as I have said I am a 21 year survivor of lung cancer!
Here's my advice: Go to your politician and don't leave until you get some positive results toward better health care. Secondly, not all lung cancers that have more than one lesion are metastases. Three of us on this site have what is called Multifocal Adenocarcinoma of the lung, which mean that there are more than one lesion at a time. Please don't try and read your tests. Unless your results have been confirmed by a radiologist I don't think that it's a wise idea unless you have been trained to do that. Otherwise you will be driven crazy.
I was a bit confused about where this all leaves you. Tomorrow is Monday and you need to think about one goal at a time as @sakota suggested. What will yours be? What symptoms do you have? Are you breathing ok? Are you in pain?

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Merry, going to my Senator's office today, will sign release, and share story. Yesterday, Oncologist at VA said we could just radiate it. Asked for second opinion outside of our area. Said he can't refer me to Mayo, because they seem to think a second opinion locally, but would see about a referral to Minneapolis VA, which I know is not a cancer treatment VA. Trying not to be crazy, thanks!!!

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@carrington- Hopefully they will call soon.

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Thank you for the feed back and the link. I am waiting for them to call me for the date of the CT Scan. I am assuming it will probably be after Christmas.

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@carrington- Welcome to Mayo Connect. Pulmonary Carcinoid cancer is a different kind of lung cancer and more unusual than carcinomas and multifocal adenos. The levels of markers in your blood that you mention have risen and I am very glad that your have a CT scan rescheduled for an earlier time.
It's very very difficult not to worry when we have an unexpected test result. No one can tell you not to be concerned or worried. But what I see is your doctors responding very timely for you so that they can respond as quickly as needed. when is your new CT scan scheduled for?
https://www.cancer.org/cancer/lung-carcinoid-tumor/about/what-is-lung-carcinoid-tumor.html. They tend to show up in more than one place in your body too.

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Rather timid here. First time to post. July 9 I had the lower lobe of my left lung removed due to a pulmonary carcinoid (stage 3) followed in August by removal of lymph nodes. All except the two nodes taken with the first surgery were clear. In September my Chromogranin A, Serum was 929 ng/ml (normal is 93 ng/ml or lower). December's blood test indicated that it had risen to 1614 ng/ml. A new CT Scan is to be done sooner than the one originally planned. I am trying not to be concerned. Any advice or comments?

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@meka

Not sure what is going to happen today. I'm going to ask if I could record whatever it is. You may, are there any VA medical centers that are cancer centers, or affiliated?
I do have a friend that goes with me, so some support. Will head straight to Senators office today, if I need too.
Good note, we are having one of those mid December warm-ups and have spent much time out with my dog, Summitt and to the dog park yesterday. He always makes me laugh 😂!!!
No I am very asymptomatic, yes I didsmoke and have mild COPD.
Always been active physically, it's served as an outlet all my life!
Again, thanks for you all being so willing to support and listen. Looked for a group locally, not. Anyway out to get my vitamin d before I go. !!

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@meka- How did you make out?

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@merpreb

@meka- I am so sorry that you have to go through all of this just to get a diagnosis and treatment. I'm literally at lost for words. First of all there are no "best kinds of cancer" and secondly there really aren't any cures, there are treatments. There are cancers that are virulent, aggressive cancers and very indolent ones-slow moving or not changed. And there is hope- we are all here as survivors! as I have said I am a 21 year survivor of lung cancer!
Here's my advice: Go to your politician and don't leave until you get some positive results toward better health care. Secondly, not all lung cancers that have more than one lesion are metastases. Three of us on this site have what is called Multifocal Adenocarcinoma of the lung, which mean that there are more than one lesion at a time. Please don't try and read your tests. Unless your results have been confirmed by a radiologist I don't think that it's a wise idea unless you have been trained to do that. Otherwise you will be driven crazy.
I was a bit confused about where this all leaves you. Tomorrow is Monday and you need to think about one goal at a time as @sakota suggested. What will yours be? What symptoms do you have? Are you breathing ok? Are you in pain?

Jump to this post

Not sure what is going to happen today. I'm going to ask if I could record whatever it is. You may, are there any VA medical centers that are cancer centers, or affiliated?
I do have a friend that goes with me, so some support. Will head straight to Senators office today, if I need too.
Good note, we are having one of those mid December warm-ups and have spent much time out with my dog, Summitt and to the dog park yesterday. He always makes me laugh 😂!!!
No I am very asymptomatic, yes I didsmoke and have mild COPD.
Always been active physically, it's served as an outlet all my life!
Again, thanks for you all being so willing to support and listen. Looked for a group locally, not. Anyway out to get my vitamin d before I go. !!

REPLY
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