My story

[dsm7773]

Hello. My name is Debbie. On August 18, 2021 I had an upper left lobectomy and during the procedure 12 nodes biopsied. I am blessed. The nodes were negative. I am in remission, no other treatment at this time, only monitoring. I have emphysema as well. After reading many of the posts on this site, I realize how blessed I am as well as how weak an individual I am. I am extremely emotional after the surgery. I am told the emotions are normal. I don't know what happened to me, but I feel I am suffering PTS and fear the PTS moving to PTSD. My experience was very dark. However my doctor and all medical staff were great! I have had great support from family, friends and my church. I don't have a clue what has happened to me. 

I am 59 years old and smoked for 47 years of the 59. I am not surprised to have lung cancer. I fear another future diagnosis of lung cancer. The reason I fear a future diagnosis is because right now I can not see myself allowing another lung surgery. It has been that traumatic for me. I had a colon resection 10 years ago and had no emotional issue. I am not understanding why I am stuck in this dark place since the surgery.

[LexieCat]

Hi, Debbie,

Congrats on the great outcome of your surgery! The best cure I know for feeling depressed about a lung cancer diagnosis is to stay close, and post often, in this forum. Talk about what worries you, listen to the wisdom of others who have BTDT. You can also reach out to find a therapist, since you feel particularly traumatized by your diagnosis and surgery.

I was a longtime smoker, too, so I can't say I was shocked to find myself with lung cancer. It's a scary thing, for sure, but learning as much as I can about my specific cancer made me feel much more in control.

I had a recurrence three years after my lobectomy (for what was then a Stage 1b cancer)--the recurrence in my other lung was Stage IV because I had a small metastasis to my sacrum. That was pretty upsetting at first, but I came back here and got busy dealing with what would come next. Surgery wasn't an option due to the Stage, but at first, before I knew about the metastasis, my doctor said it might be possible to remove the nodule with Cyberknife (radiation). Instead I wound up with a course of chemo and immunotherapy, and when the cancer eventually progressed again I chose to participate in a very promising clinical trial. I was treated a short time ago and it's a bit ambiguous how well it's working, but if it doesn't for some reason, there are lots of other trials out there for which I'm probably eligible. 

The thing about lung cancer is that it does change your life to some extent--even if there is never a recurrence you need to keep checking. OTOH, most of us learn to adjust to the new normal and even if some things are different, we are still able to enjoy life.

Lung cancer brings with it inherent uncertainty--you never know if it will come back or if the new treatment will work, or for how long it will work. Still, we have people here 15-20 years out from their advanced cancer diagnosis. It does take a while to get your head in the right place, but it can be done.

Good luck, and I do hope you'll stick around here. This is a great group--they've had my back (not to mention my lungs) since my original diagnosis in 2017.

[Judy M2]

Debbie, first of all, congratulations for a successful outcome of your surgery. Remission is a great status. 

Although I wasn't a candidate for surgery, the side effects of chemo caused me to need emergency abdominal surgery on Valentines Day 2020. The type of surgery I had is life-saving and often results in lingering trauma. Recovery was painful, long and difficult, and I was left with a permanent, invisible disability.

I don't really know how I was able to recover my pre-diagnosis state of mind. The months after surgery are still a blur of pain to me. But every day I was able to get a little stronger. I've had chemo and radiation and am now on a targeted therapy, NED since April 2021 and feeling good. I'm well aware that a recurrence is possible, but now I just live one day at a time. 

If I had needed it, I wouldn't hesitate to seek therapy, and I hope you'll consider it. As lung cancer patients, we all experience trauma from our diagnosis, treatments and side effects. I'm almost 2 years from a Stage IIIB diagnosis and, except for Covid, my life is mostly back to normal. I hope you can get there too. 

[Tom Galli]

Debbie,

Welcome here.

When I emerged from my 3 surgeries (1 removed my right lung, 2 to deal with suture failures) I was also in a dark place. When I endured recurrences, it got darker. When I failed to address my depression, it got darker still. But, consider that I was diagnosed in 2004 and if I can live so can you.

Lexie's comments about a life changing diagnosis of our disease are spot on. Her advice about the need to seek a new normal is also appropriate. So, how does one go about doing that?

First, recognize you are not alone. Stay connected with this forum, discuss your uncertainty, and seek information on how and what we did (are doing) to deal with it. Next, recognize and accept that the pace of this disease is often not one and done. We pray you don't experience a recurrence, but you'll likely have screening scans for the rest of your life. And each scan will drag you back into uncertainty. I've been scanning for almost 18 years and each one is a trip down the scanziety highway! Don't bottle up your uncertainty; don't try and do this thing yourself. Last, lean about this disease. Here is a good place to start. Knowledge is power and gives one the ability to ask appropriate questions to your physicians.

And, I completely agree with Judy's suggestion to seek therapy. I didn't for a long time believing myself man enough to deal with depression. That was a big mistake. You need to talk about how this disease is affecting you. While we are a resource for questions, we are not trained therapists. 

Stay the course.

Tom