Celebrating 25 years of lung cancer

I'm a new member and very awkward at the moment, I've tried joining group discussions once or twice but each time I backed out. I was drawn to what you had to say because of your heading, i.e. 25 years with lung cancer, you just don't hear this very often if at all. I wish to have your positive attitude and fighting spirit but that's a big challenge for me, I've always looked at everything from the negative side, thus my battle is difficult due to my lack of hope and positive attitude. I hope that with time I will perhaps become better at achieving this goal with the help of good people like yourself, thank you.

I just found this thread. 25 years is awesome and great to hear for all of us with lung cancer. I was diagnosed one year ago in January 2022 with NSCLC of the adenocarcinoma type in one main tumor and a couple satellites and two lymph nodes. Unfortunately surgery was not an option so I had the radiation and chemo and now in immunotherapy. I am being treated at Mayo and doing my best to have a positive attitude and succeeding most days. It is good and very helpful to hear of such great survival records with this disease.

I keep thinking of you and your 25-year-long story. I hope your radiation in October was successful. Your diagnosis is similar to my own, although I am only three years into my journey (as described in a post in another thread; I don’t know how to link to it). If possible, could you answer the following questions?

• Were the re-occurrences of cancer discovered through surveillance/monitoring or because of symptoms? Were you symptomatic?
• Have you had any targeted therapy to treat specific mutations, based on molecular testing?
• Was radiation done on nodules that were not completely solid?

I have also sent you a private message; I too am at Sloan.

I was diagnosed last fall and am being treated through a clinical trial at Mayo. My original clinic offered a dead end scenario. It takes a little time to accept but I just take each day as it comes. I do what I can energy wise and try to carry on as before. I’ve found ordinary life to bring joy and comfort. I hope this helps even a little.

Hi @frouke @nonobaddog and @lijda. 25 years is amazing. I'm writing this message on behalf of @merpreb. When we don't hear from a member, it is easy to think the worst. I'm glad to tell you that Merry continues to add years to her 25 year lung cancer survivorship and is going strong.

For the moment, she has had to step back from the Lung Cancer support group as she has turned her energies to being the main caregiver to a family member.

I look forward to your continuing in Merry's footsteps and providing support for one another and building the community we have on this forum.

I'd love to get an update from each of you. How are you? What treatments or challenges are you facing or questions do you have?

Hi Colleen,
Yes, 25 years is sure good to hear. It gives hope to all of us. That kind of time is out of reach for me but it is good to hear she is still going.
For an update, I am right at 13 months since diagnosis, is that when people start counting? I am feeling pretty good. I had six weeks of chemo and proton radiation in March and April of 2022. I currently just had my 11th out of 13 immunotherapy sessions. My immunotherapy drug is durvalumab and it made my thyroid stop working. It does that to about 20 percent of patients. So I just started taking oral thyroxine and hoping that goes well. I just had a CT scan and my care team is happy with the way things look. I am stage 3B with a main tumor and a couple lymph nodes involved. I didn't have any new spots or anything overly concerning this time and that feels good. I'm hoping to keep going.
I hope everybody keeps going as well. I find it helpful to hear from others on this platform. Thank you for letting us know and for reaching out.

Hello everyone, I’m in good spirits and happy you reached out to me…I just saw the results of my recent ct scan post treatment on my portal and it says everything is stable and no new nodules, yay…need I tell anyone how happy I am, amen. I’m a bit worried about speaking with the surgeon..allow me to explain…last June 23, I had a treatment for a cancerous nodule in the right lower lobe.. I spoke to the surgeon a few days before and he was positively negative with me…first he carries on about another nodule is going to turn…of course I asked if he could remove it with the other one but he said no I can’t with no explanation.. I want to know why he said we’re trying to get you to 73?? I just froze… why would you say this to a person going for a treatment which is a wedge is removed instead of a lobe…I have already had a lobectomy in August 2020. I’m going to stop now before I write an essay. I shall ask the doctor and let you know how it goes, take care and stay uplifted

It’s me again…I usually read over what I said…I’m currently 71 years old…I recently battled stage one lung cancer for the second time..in both cases I was stage one… this is what startled me…why did he have such a poor outlook… I read what some people are dealing with and I am completely overwhelmed by your courage which I was lacking until now, thank you 🙏

Thank you Colleen

@frouke @nonobaddog and @lijda. - Good morning and thank you for reaching out to me earlier. Due to my home situation, as COlleen has said I have had to step back from full-time Mentoring for right now and take care of my husband. Up until this year, he has seen me through all 25+ years of my lung cancer journey and now I owe him the same.

I won't be able to respond to each case here but the main thing that I want to say is that having a positive attitude didn't come easy or in short order. Some of it is intrinsic I think. I was one of a pair of twins and we fought over everything. I had to win and it seems in everything I do now it is true. Another thing is that there are many depressing factors about having cancer of any kind including the country's health care system. So those have to be overcome.

Having good doctors who are encouraging and a support system behind you is extremely important. I find that the main thing is persevering, plodding on day after day, and feeling crummy or discouraged. I don't think that anyone can feel positive or upbeat 100% of the time. Right now I am sitting on my bed feeling terrible from having to take prednisone because I have pneumonitis as a result of SBRT from last October. I had 2 lesions zapped from my right middle lung that was very close to my heart. It was my 3rd SBRT. I have not had any other targeted treatments. A long time ago I did have chemo and my first two cancers resulted in total lobe removals.

I do hope that you will continue to support each other as you have. I will pop in from time to time and I miss everyone. I spent a lot of time googling for answers but interactions with real people can't be replaced. I think of you all.
Merry

Hi Merry,

Sending good energy to you and your family.

BPB