Living with lung cancer - Introduce yourself & come say hi

Hi Colleen; I am new to this forum. I have some questions I hope can be answered. I have had tumors in my lungs for many years, slow growing and they have never posed a big problem, they were always stable until Oct 2021. Now I have pleural effusion. The main tumor is on my left lower lobe and quiet large. I was getting a fair bit of fluid build up in my lungs which was being drained every so often; now I have a tenckhoff catheter inserted so now the fluid gets drained daily. I have already had 5 rounds of chemo which didn't really do much. Just had another CT done in July and it shows a slight growth from my May CT, now the concern is that it is growing close to my spine and they are thinking of radiation to try and shrink it. My big question is I think I want a second opinion from the doctors at the Mayo clinic, but not sure how to go about it. I'm Canadian and I have no issues getting there, I just do not know what needs to happen. It is not that I do not trust my doctors, I just feel they are not taking more of a proactive approach. I am feeling much better since the catheter was inserted, and my oxygen sat's have increased from 80's to 90's. I am 52 yrs old and scared to death. I believe surgery to remove entire lung will be inevitable. Has anyone had this done?? I am heavy set, trying to lose weight, but menopause is not helping, so frustrated. Any advise would be greatly appreciated. Thank you

Tanja (Canadian)

Hi Tanja, welcome!
I can imagine you are scared. This is frightening.

As you know Canada has some premier cancer centres like the Princess Margaret Cancer Centre ON, Tom Baker Cancer Centre AB, Cross Cancer Institute (AB), BC Cancer Agency (BC) to name a few. If you're not at a top cancer center, you may wish to get a referral within Canada.

Naturally, if you're able, I also advocate for getting a second opinion at Mayo Clinic. Here's more information:
- Mayo Clinic Information Service for Canadians https://www.mayoclinic.org/departments-centers/international/locations/canada

You can self-refer or ask your lead oncologist to submit a referral. The online form for international patients will walk you through the process of submitting your info and records if applicable. Then an appointment coordinator will schedule a phone call with you to discuss appointment options.

Here are a few related discussions where members have shared their experiences and tips about lung surgery (lobectomy):
- My husband had lobectomy surgery: Mayo was wonderful! https://connect.mayoclinic.org/discussion/mayo-was-wonderful/
- Robotic Lobectomy: What can I expect? What is recovery like? https://connect.mayoclinic.org/discussion/hello-from-the-bluegrass-state/
- Lobectomy scheduled—What kind of home help will I need? https://connect.mayoclinic.org/discussion/lobectomy-scheduled-what-kind-of-home-help-will-i-need/

Tanja, what type of lung cancer do you have?

Hi Colleen, thank you for your reply. I have a small cell slow growing tumor on my left lower lobe. This has been there for approx. 2009, always watched every 3-6 months, always stable and very minimal change. Then all of a sudden in Oct 2021 everything changed, I now have pleural effusion, although very slow growing, it is growing in the direction of my spine. I'm currently at Princess Margaret and my team of doctors now do not seem at all confident on what they are telling me, never any straight answers. The gave me a totally different story back in Oct. I now think it is time for a second opinion. First they are talking about surgery, now its no surgery, then radiation, now no radiation and still no concrete answers as to why. Am I right in seeking a second opinion? I can go on about so many other variables that have prompted me to get a second opinion. Just don't know when I would get the appointment, if they even grant me one.. Thanks.

Tanja

Have a couple small spots. First colon cancer that surgeon in Owatonna thought was all removed. Three years later surgeon in Rochester removed 6.0 2.5 cm tumor in right front lobe. With chemo everything mostly stable. Also radiation in brain.

Hi @cornerpost7x7, I encourage to connect with members living with colon cancer in the Colorectal Cancer group here: https://connect.mayoclinic.org/group/colorectal-cancer/

Hi aswan, welcome. I would like to introduce you to other members of the Lung Cancer group so I moved your message here:
- Living with lung cancer - Introduce yourself & come say hi https://connect.mayoclinic.org/discussion/living-with-colorectal-cancer-introduce-yourself-come-say-hi/

I did this so you can meet other members like @merpreb @vic83 @benny124 @tmauko @sierracharlie @corgimenow @lls8000 to name a few.

Your message was brief. You mention ground glass opacity and a severe cough. Are these the indications that led to your getting a lung cancer diagnosis? Do you know yet what type of lung cancer you have? How are you doing?

aswan, I know sometimes it is difficult for some people to talk about this but the more detail you provide, the more others on here can help.

You mentioned severe cough. For some reason, that is somewhat common when you have chemo but in my case, I have something called pulmonary fibrosis that is the continued source of my cough. This might not apply to you but something to consider when you meet with your doctor.

Welcome @vlpr. I see you have slipped easily into a few discussions and been helpful to others. Glad to have you in the group. Pull up a virtual chair. I'd like to learn more about you. Would you like to introduce yourself?

Not sure what you'd like to know. What is typical? I'm a bit on overload right now and am having a bronchoscopy procedure tomorrow with looking at a spot on my right lung (small cell tumor is in the left lung). Let me know what kind of info you'd like and I will fill you in later. Thanks so much. VLPR

This is a perfect start. So, if I understand correctly you are currently undergoing investigations of a new spot on your lung? I can understand your being on overload right now. Sending encouragement and strength as you await results.