Living with lung cancer - Introduce yourself & come say hi

@reibur1951- I hear you, I hear you. I think that ranting is fine here and so many of us feel the way you do. But politics and policies is a no no on Connect. You are doing a very special job and I know that it is tiring and difficult and sometimes thankless but you are very special to so what you are doing. It sounds that you are overwhelmed, are you feeling like that?

Not so much overwhelmed as frustrated so much to do bumps in the road occur but must be God's plan or would not happen... things will come together and work out somehow.... Thanks

I had surgery in November 2017 for Stage 1B non small cell lung cancer. I recovered very well from the surgery but wonder if my lung capacity will ever become “normal” again.

Don’t have a definitive answer for you. Had a lobectomy 3/19 and like you recovering well. From what I can tell from my doctors is that the remaining part of the lung does it’s best to compensate for that part removed. My oncologist suggested breathing as deeply as possible and then blowing out that breath as forcefully as able. He suggests doing this several times daily. Am going to start doing this—did today and coughed, but Inthink it might help. Good luck to you.

His involves a rather larger upper right lobe tumor with multiple lymph nodes in the chest cavity; one prominent swollen one in the axillary armpit these all have shrank with the chemo/immunology and the Supraclavicular all these were visible on the PET scan in Oct. 2017 - the surgery /radiation was ruled out because of the multiple locations and was to great of a risk with so much area to cover.
this put in in Stage IVB.

All were shrinking and remaining stable until Jan. 2019 when the Supraclavicular started to re-grow - and still growing - he was on immunology from Apr - Feb 4 - - Feb 25 he started a new round of chemo with immunology but the lymph node is still growing - it is on or near the jugular vein - radiation is next option to see if it can be stopped from growing - and then if necessary surgery.

Can only hope and pray that radiation will help -

the prembo/immunology remain as treatment because of it results on the chest cavity and they are hoping it will have some effect on the Supraclavicular tho at present it seems not to be since it is continuing to grow. thus he was licked off of the 2nd clinical study because the Supraclavicular lymph node is still growing and not responding to the chemo/immunology

Radiologist appointment Monday after noon - got the appointment for the biopsy/Geonmics on Thursday at 9 am means a wake up call and on the road at 5 a.m. this is to help to find if there is treatments after radiation and clinical studies he can participate in but all rests on how he and the lymph node responds to the radiation.

I do not look for radiation to start until after Easter since Good friday is right after the biopsy and they wanted this done before any radiation treatments began.

Oh he does ride his bike almost daily 8.6 miles round trip to a country store to have coffee and BS with the local farmers etc. and it is most generally in all types of weather he has missed very few days - only one or two when we had that very bitter extreme sub-zero weather the end of Jan.

Thanks. I think my expectations may be too high. I do fine with normal activities; water aerobics three days a week and walking 2-4 miles most days. I just struggle with physical exertion such as shoveling snow, raking leaves, or packing things up stairs. I had a left upper lobe lobectomy and will be 72 this year.

@armstg- Good morning and welcome to Mayo Connect. I'm so happy that your recovery went well. You are now 2 years out. Have you gone to pulmonary rehab? It is the best way to regain as much breathing capacity as you can. I am guessing that you had a lobectomy. My first cancer, 22 years ago this October. It was also a 1b, NSCLC. I did not need chemo. As a matter of fact it wasn't recommended. What about you? Unfortunately lungs do nor regenerate but what is left of your lung will fill in. That doesn't mean that it will be like new but you will not have an empty space. Did you have a wedge or a lobectomy? What activities have you re-engaged in? Are you exercising? Are you using an inhaler? As the summer heats up and the humidity rises you might breathe with more difficulty so your pulmonolgist can prescribe one if you need it.
I'd like to share my blog with you that I have written about my long journey. https://my20yearscancer.com/
Please feel free to ask any questions that you might have.

Prayers - your expectations is what keeps you going - just do but do not over do. each person is different depending on gender, age, other health issues etc. It is the "person who is ill" that counts and one must remember that others should not push him/her beyond their exceptions of what they can handle etc. but let them do what they want and they will find their limitations but they may not voice them others just have to "read the signs" and be silent, observe and respect the persons and the signs his/her body gives off; notice silently what the person can or will not attempt to do. Above all if they are sleeping that to me is a "Do not disturb" as that is the body's way for some healing time. Rest and nutrition are the most important items beside "quality" medical care and treatment. In the end we all have an appointed amount of time here on earth and when it reaches the end comes reality is that no one can stop it from coming and happening.

@alamogal635 , @armstg- I have been doing some research so that all of us can see what happened inside our lungs before and after lung surgery. I wish that I had done this when I first had lug cancer but today's videos are great.
Please bear with anyone who sounds boring, it's still great info.

https://www.youtube.com/watch?v=kacMYexDgHg
what happens after lung segments are removed: https://www.youtube.com/watch?v=ZGE57Y_K8bc
https://www.youtube.com/watch?v=R6KAbpzKg38
https://www.youtube.com/watch?v=ad4f5AfCwls