Living with lung cancer - Introduce yourself & come say hi

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 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

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; 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)

Ground glass opacities severe cough
Lung cancer diagnosis

Vctoria, thank you for helping me with my anxieties. I am a native New Yorker, born in 1943 in the Brooklyn Naval Hospital which is no longer, raised in Long Island, moved to California in 1962. I miss the theaters of NYC.

Thanksw, again. Have a good night.

I am Victoria and a native of Minnesota but have lived 30 years outside of Minnesota and wow, other people don't have winters like we do! I don't take naps.

Yes, we can renew online too. However, I had eye surgery and now I am 20/20 so I have an affidavit from doctor saying so. So, I have to go into the DMV office to give it to them. Another thing to do. I try to do errands, etc. in the mornings as I am exhausted by 2:00 p.m. and need a nap. Do you take naps? I never did before my husband died. Oh, how I miss him. I need a grief group. (sigh)

Are you a native from Minneso?

Does Vic stand for Victor or Victoria?

Elizabeth

About your driver's license. I went through that 2 years ago when I moved back to Minnesota. Thank God for multiple choice questions! Before, I was living in Florida for ten years and they actually let you renew online with no exam. They used the same picture from the earlier license so one is a lot younger in the picture if one is stopped by the Police!!!!

Hi again Elizabeth. When it comes to knowing anything, we all start out not knowing. Knowledge is built up over time by working at it. You will become accustomed to the terminology. 1) Looking at CT scan reports, one finds a lot of good terminology to google. I am a big proponent of doing that. 2)When it comes to treatment, it will depend on the kind of cancer one has and if it is a primary lung cancer - that is the cancer originated in the lung not somewhere else. 3) Another factor in treatment is how best to preserve lung tissue for quality of life. 4) Treatment ranges from surgery to targeted radiation to immunotherapy to chemotherapy. Merry knows a lot about radiation. If they remove a cancer, they can do gene analysis and then possibly apply a drug therapy. Chemotherapy is what everyone hears about as it has been around a long time. I read that it is more for when cancer is also suspected outside the lung, but I am no expert.
So far, I have only had surgery for the largest mass. They cut it out wedge resection (smaller piece removed) and they did not take the whole lobe-lungs have total five lobes) and I did not need any other treatment since the cancer was stage 1b, lymph nodes negative, and cancer only in the lung (my PET scan did not show any activity outside my lungs). That was almost 7 months ago. I have at least four other part solid nodules/ground glass, so I am doing CT scans every three months. Surgery is a potential option for the next nodule, but I will need to finish my Plavix therapy for my stent first (duration of at least 6 months). On the last scan things were stable. I also could choose radiation. Even the doctors have to think about whether to be aggressive or not with multifocal lung cancer. It is a complex cancer. I don't get too excited as long as it can be managed. They did not do radiation yet, because I would need to have a needle biopsy of the targeted nodule. It was not worth the risk of a collapsed lung.
I don't feel sick, I do have limits on exertion as my blood oxygen levels go below 88 at a certain point.
I think if you are doing gardening and working a lot on the computer that the doctors will be pleased. Physical and mental exercise is the key to staying fit. Don't be impressed with fast-talking people - it is not a sign of knowledge. Just keep digging and it all eventually will mean something to you. I feel like I am in medical school sometimes. P.S. I love my computer - I have found so many things to do with it. It is so efficient.