Had lobectomy in 2020 still having radiating severe nerve pain.

I learned that others experienced the same pain that I did with rib’s & diaphragm. Also that steroids & other treatments are effective.

@mef
When You say “Now I know what it is & how it could be treated”, can you share what you mean?

I too complained of rib & diaphram pain for a couple years post op & all I got was oh sometimes that happens after a lobectomy with no offer of diagnosing & treating it. It almost always happens when I bent over from a sitting position. Now I know what it is & how it could be treated. I am happy for the knowledge but disappointed that none of my doctors told me that.

I too complained of rib & diaphram pain for a couple years post op & all I got was oh sometimes that happens after a lobectomy with no offer of diagnosing & treating it. It almost always happens when I bent over from a sitting position. Now I know what it is & how it could be treated. I am happy for the knowledge but disappointed that none of my doctors told me that.

Thanks - I needed that. I worked in Banking in an area of regulatory performance where acceptable error was virtually zero. So I have challenges expecting less in my own life - as I’m sure my children would affirm 🙂

My Rheumatologist is really more like my primary because until this lung cancer, RA sat at the top of my risk list. But it was pure chance that I learned that Prednisone mitigates Rib and Diaphragm pain. That’s big to me. It tells me that eventually it could resolve or that other meds less dangerous over time than steroids could help manage it.

The scarring/fibrosis associated with the lobectomy is an ‘is’. Disappointing but … I think I only see effects of that with exertion.

But thanks again for support and the virtual forehead thump. 😜

Hi Pam, @pb50, It's easy to doubt treatment decisions after the fact, but we never really know what else may have happened without the lobectomy too. We make the best decisions that we can with the information that we have at the time. It's all a learning experience, and you've been so very helpful in guiding others on Connect to ask the right questions. Thank you for that.
It sounds like the RA certainly complicates things, but I'm glad you are finding some relief, even if it's temporary. It sounds like you've tried steroids before, so you somewhat know what you're up against, and when it's too much. I hope the flare calms down for you soon, and I'm glad you pulled your rheumatologist in too!

I’ve learned a bit too. Yes, 3D/MIPS = biz as usual for lung screening at least.

I have also learned that scarring = fibrosis. And this variety is a documented possible outcome of lobectomy. No real treatment.

Good learnings include fact that this variety of pulmonary fibrosis is focal and less likely to progress compared to idiopathic variety.

Still irritates the heck out of me that the diagnosis of potential malignancy triggered a “get it out, get it over with” mentality, and consequently I did no comparative research on treatment options, and thus failed to learn a pre-surgical consult with oncology was advised. Knowing now that a 1.4cm nodule could have been zapped with radiation or removed in a wedge rather than full lobectomy leaves me feeling regretful and outright stupid.

So here’s the bit of serendipity. I also have RA and have been in what’s known as a Flare for a couple of weeks. That’s when my symptoms of pain and swelling inexplicably move from ‘well controlled’ to ‘what the hell’, with increased pain, lots of swelling, etc. Yesterday my Rheumatologist talked me into a course of low dose prednisone (I turn into a banshee at normal dosage). So I took with breakfast and within four hours my rib pain on deep breaths is 80% GONE!! Wow!!! So at least some of the pain and diaphragm expansion isnt only physical restriction from fibrosis. It’s treatable! Well it would have to be reserved for important occasions when I need/want to feel kind of normal because you can’t live on a steady diet of steroids. But I can have some relief some of the time. 😀

So I’ve met the enemy and it is me, so I will take this glimmer of up side.

Hi Pam, @pb50, I’m glad you reached out to the pulmonologist. It’s difficult to interpret the reports, but that scaring could be a contributing factor. Hopefully they will be able to give you an idea on what to expect going forward, like will that break down as time goes on?
I hadn’t had a chance to get back to your MIPs question, by now you know that the scan is the same as a standard CT from the patient perspective. It allows a more detailed image and is often used for lung scans. All of my CTs are ‘with MIPs’ (Maximum intensity projection).
I’m glad there were no new nodules found!

Well I received the readout of my CT. Good news is no new lung modules. But I didn’t expect one. The part I didn’t understand says

Lungs/Pleura: Centrilobular and paraseptal emphysema. Left lower lobectomy with associated pleuroparenchymal scarring in the left hemithorax. No suspicious pulmonary nodules. No pleural fluid.

So I have a message out to pulmonologist asking whether the pleuroparenchymal scarring could be contributing to this vice grip I feel in my ribs and diaphragm when I try to take a deep breath.