Typical VATS post-op recurrence? - 1252256

cynlewis
Posts:4

I had VATS right upper lobectomy on Oct.22, 2012 for stage llla invasive adenocarcinoma. I have had an unremarkable recovery, I believe, with the typical post-op aches and pains; none of which required additional doctor's intervention, other than once for a medication interaction problem. I have had one post- op visit with my surgeon, who recommended follow-up chemo and radiation (although margins were clear and he removed the offending lymph node along with many others), and he referred me to an oncologist and a radiation doc. After meeting with both of them, I did extensive research and declined both chemo and radiation due to the poor improvement in OSR in recent studies and the toxicities/side effects associated with both therapies.
Three days ago, I awoke feeling as if I had been kicked in a right rib, in the back about 1/2 way down my rib cage. There is a painful lump on the rib. The discomfort and lump have remained unchanged in the last 3 days; no improvement yet no particular worsening. I do feel as if there is a band around my chest at times. I had a normal chest x-ray about 1 month ago, ordered by my PCP as we investigated a new profound fatigue that turned out to be an interaction between Cimetidine and Metoprolol and has since resolved after weaning off the Metoprolol (ordered for PAC's which seem to have been a temporary post-op issue).
My question is whether the rib pain and lump are a typical post-op occurrence? I am someone who prefers not to run to the doctor with every little complaint and am perfectly comfortable with a "wait and see" approach for most things but I don't want to ignore what might be a significan issue either. If your recommendation is a doctor's check, what is the protocol for this kind of thing? Do I see the surgeon, the oncologist, or my PCP?

Thanks for your help!

Forums

cards7up
Posts: 635

Those of us with LC don't hesitate to see our doctor when we encounter a problem especially something that feels like a lump. Since you're declining further treatment, you should either call the surgeon or PCP.
Wishing you the best. Take care, Judy

catdander
Posts:

Hi cynlewis,
What I understand you to say is you declined post surgery adjuvant therapy but not to treat a recurrence if it comes to pass?
With what you've described you'd want to see your medical oncologist, like Judy suggests. That is the person who will head the work up on whether this is a recurrence or some other issue. And since it's become bothersome so quickly I'd certainly call Monday to tell them of your symptoms.

My husband too never saw a doctor in the 10 years I knew him prior to his symptoms leading to a nsclc dx. It's turned his world on its end. I'm very sorry you're going through this and hope there's a better answer to why you're having these symptoms. But yes your oncologist is the person you want to notify.

Let us know how things turn out,
Janine

Dr West
Posts: 4735

I would just underscore what Judy and Janine have already said, mainly that I wouldn't consider any new lump or pain to be normal in the weeks to months after surgery for lung cancer -- it's OK to have pain that is gradually decreasing, but not the other way around.

Sometimes people can have increasing tightness and/or pain, and perhaps even a lump, from scarring or some other non-cancerous post-operative change, but it's unusual enough that it warrants being checked. And a chest x-ray is really not sensitive enough to provide much reassurance.

Parenthetically, though I hesitate to bring it up now, I must confess (at least for the benefit of other readers) that I strongly favor post-operative chemotherapy +/- radiation for people who have undergone surgery for stage III NSCLC. The benefits of post-operative treatment tend to be relatively modest for people with a lower risk of recurrence, but as the stage of the cancer increases, the relative benefit of adjuvant therapy becomes greater and greater. The studies that have broken down adjuvant therapy benefit by stage after surgery have indicated an increase in long-term survival by 15-20% or more, compared with a probability of the cancer returning and being incurable in 75-80% of patients after surgery alone for stage III NSCLC.

-Dr. West

cynlewis
Posts: 4

Thank you Judy, Janine, and Dr. West, for your replies. I was a bit suspicious that I should pursue this, hence the posting, and I appreciate your input. I will call my oncologist first thing tomorrow morning. Best wishes to all!

Namaste,
Cynthia

cynlewis
Posts: 4

Well, I called my oncologist's office on Monday. There was really no change in my physical status over the weekend or this week, so far. The doctor wasn't in the office until Tuesday and ordered a chest x-ray which I went and had right away. Received a call from his nurse today who said there really wasn't anything on the x-ray except maybe some scarring. She said I should take ibuprofen for the pain and call back in a few days if that wasn't taking care of the pain and I needed something a little stronger. I told her that I didn't need pain medication; I am handling that fine but there is something wrong and I want to know it is. I told her that I really don't believe this is just post-op scarring and would they please do some other testing. My body tells me something more is wrong. So she talked to the doc again and they will do a CT scan. Someone from scheduling should call me tomorrow. I felt uncomfortable pushing like that but I am trying to listen to my body and to those who tell me that I have to be my own advocate through this. I hope I am not being too demanding in their view but I'm trying to remind myself that people-pleasing needs to take a backseat to caring for myself.

Dr West
Posts: 4735

I think that your pressing was very reasonable. I consider a chest x-ray to be a remarkably less informative exam than a chest CT and not particularly reassuring compared with a CT that looks favorable. Good luck.

-Dr. West

laya d.
Posts: 714

cynlewis:

Don't feel bad about being what you consider to be "pushy." It's totally OK. Trust me. And, if your request actually was unreasonable, they would not have ordered the CT. They would have told you "sorry."

Anyway, best of luck to you. . .Please keep us posted.

Laya

catdander
Posts:

Cynthia,
So glad you're moving forward with a CT. Advocating for yourself is a infinitely more important than someone else's measure of how pushy you are.
Namaste

double trouble
Posts: 573

Cynthia,

I think there is a big difference between being assertive and being aggressive. You did the right thing, and did so politely. I hope your CT results in answers and that the pain is from a benign cause. Please keep us posted.

Debra

dwhang
Posts: 9

I know this is a relatively old thread, but as a new member to the forums, I'd like to share some related information that I hope will help someone down the line. My mother-in-law had a 24 mm tumor, and the mediastinoscopy confirmed it was stage IA. She monitored her lungs with CT scans every 6 months for years because of some prior lung issues. So she caught the cancer as soon as possible. Her surgeon, who is quite well-known for VATS, did a lungulectomy (segmentectomy). Before we went with him, we consulted with another cardiothoracic surgeon who said that given the size of the tumor, we should definitley do a lobectomy. So when we went with the well-known surgeon, we just assumed she would be getting a lobectomy using minimally invasive techniques. We were naive back then and didn't do what we did for the next 3 years, which is read everything we possible could about lung cancer, and instead just trusted her surgeon.

According to the pathology report, the surgeon only resected 1mm margins. Some surgical guidelines for lung cancer recommend resecting a margin equivalent to the tumor. Well, less than 6 months later, there was significant cancer activity along the surgical incision line. From there, it rapidly spread to her lymph nodes and then 2 years later, she is in the last stages of her life.

I bring this up here because I cannot recommend strongly enough that you advocate for your health and not to hesitate calling your doctor if you feel something isn't right. Also, with this terrible disease, I think aggressiveness is the best approach, which includes chemo and radiation post-surgery. Her surgeon's exact words were, "no need for chemo or radiation because you are cured of your cancer." And her cancer did come back in her ribs, among other places.

Cynlewis, I hope that all is well and that there were no complications from the surgery.

Fight on,

Daniel