Post Surgery results from RLL Segmentectomy

[SOUTHERNCAGIRL]

Since my surgery on February 17 (lung segmentectomy on RLL) I still have the same exact feeling around my chest as if someone pressing and squeezing in on it. I’ve been doing some research on this and finding out that some people never have that go away. There’s actually a medical name for it. called “postthoracotomy pain syndrome”.,.. when certain nerve damage is more permanent so I’m concerned about that being me.

Aside from that, during the day, I just deal with it and I don’t take any pain meds for it, but nighttime is the hardest very very difficult for me to sleep. I'm hoping this will not be permanent.

I'm going to see my oncologist on Wednesday to discuss targeted therapy. My stage was upgraded from 1A to 1B. I had a 18mm non small cell cancer nodule removed and eleven lymph nodes were taken out and all were negative. There was one small pinhole invasion in one layer (there are several layers, so it did not penetrate too far and the entire cancer, including the margins around the penetration was all captured) and thats what upgraded it from an A to B (the pinhole sized invasion)

But they said even with the pinhole invasion, they got all the cancer out so I can technically say I'm “cancer free”. Because of the invasion only hit the first layer and I guess there's a couple layers before it would be considered invasion outside of the origination.

But because I'm being upgraded to a "B" they are referring me to an oncologist to consider taking targeted therapy of this medication call Tagrisso which treats the EGFR mutation which I have (and the potential side affects look frightening). Along with the TP 53 mutation, which does not have treatment available. And something called immunotherapy may be discussed as well, but, I don't think my doctor was persuading me towards that as much as the Tagrisso.

Otherwise, they would not have done anything more if my stage would’ve remained at 1a.

Not sure if it’s just Insurance qualifying me that’s driving this (because I am now at a "b" level instead of "a") or if it’s something I really seriously need to consider to lessen the chances of recurrence. My surgeon said he's confident I have gotten it at early stage and survival rate is still high. I have a lot to study up on. If anyone can comment on any of this with their knowledge or experience, I welcome the input and guidance.

Thank you.

[JanetteR57]

understand your concerns and reading up on it you'll see lots of different results from different studies in different countries. When I was diagnosed in January 2011, most of these treatment options did not exist - the only mutation with targeted treatments available and then only on clinical trials were for EGFR+ which I wasn't. I had open surgery, a 7cm tumour removed (mucinous adenocarcinoma 7cm) and no further treatment - told that chemotherapy didn't work for my specific type of cancer. I read up at the time on what was available for my specific type and the only info that came up was for south-asian women and how rare it was. I've been involved in lung cancer research since 2013 and current treatment landscape bears little resemblance to that time in every way. Finding lung cancer early is a relatively new phenomenum and often through screening of imaging to investigate something else. As there are trials now exploring Neo-adjuvant treatments before surgery and adjuvant (after surgery), it's worth discussing with your medical team about your specific situation as we're all different. All I know is that I'm eternally grateful that I was found at an operable stage as the majority in the UK aren't even if screening in some places is finding them now, the majority of symptomatic and never smoker lung cancer patients are still detected at later stages. the nerve pain will ease - one thing I found helped was not lying on the side of surgery (mine was upper left lobe) and sleeping propped up with pillows for weeks to get good rest and allow internal as well as external healing. Are you keeping mobile and active? I was walking every day and do believe that the stretching and other exercises told to do and later when I resumed my swimming (which involved stretching all limbs) helped me no end. just because a few have a long term situation with nerve issues doesn't mean all will and it's still a minority who do. good luck with your continued recovery.

[SOUTHERNCAGIRL in reply to JanetteR57]

I am so grateful for your input. And for the hope that I may get better from this debilitating after surgery pain I am walking every day, during the day I go about my day as if I’m not in this situation I’m not super active physically, but I am up and about most of everything I do is on the computer using my mind more so than using my body. have to head over to the park to get a little walk in and get outdoors to stretch my body. I will definitely try to do that more often.

I’m not super hopeful about treatment options as I have other health conditions like rheumatoid arthritis that I take weekly injections for that lower my immune system as it is. I also have a heart condition that I was born so I’m concerned about treatments not doing so well as far as side effects go with my body. So that’s gonna be a tough decision. For all I know my oncologist won’t even qualify me for such treatment based on my current conditions alone I will know soon after meeting her..

Thanks again so much for your reply.

[JanetteR57 in reply to SOUTHERNCAGIRL]

Glad if it helped. Exercises/movement can also be done at home or in a chair even with existing conditions - have a look here.... there may be similar information on the heart charity or arthritis charity websites... asthmaandlung.org.uk/living...

This surgery booklet was written originally by my local tertiary surgical centre then adopted a few years later by the UK lung cancer charity Roy Castle lung cancer foundation and is regularly updated. It can help prepare our expectations for surgery and beyond especially when we may be impatient around expected milestones... good luck.

roycastle.org/app/uploads/2...

[kpark51]

I was diagnosed as 1B, back in 2017, with a tumor size VERY similar to yours. I also had a bit of visceral pleural invasion, all clean margins and lymph nodes. It was recommended that I NOT do chemo or anything else, as the studies showed that with tumors that small VPI does not indicate a need for further treatment. I have done quite well. Still have the feeling of a bank across my chest, but it is not painful, just annoying.

Here is an article from Cancer Grace, which is run by Dr. West, a very highly respected oncologist. You can see how they determine further treatment, and it is when the tumor is MUCH larger, with VPI. Be sure to read all the answers.

cancergrace.org/forum/stage...

Wishing you all the best. I think you will do just fine.

Click the link twice.

[SOUTHERNCAGIRL in reply to kpark51]

I read the link you sent and found it very interesting and helpful. I wonder if they still feel the same about this in 2025? I hope so. Did you get a lobectomy back then? They chose to do a segmentectomy for me, which on one hand was great that I lost less of my lung, but on the other hand, could something have been lingering in the rest of the lobe that is being left in me? Makes me a little nervous about that. Please keep me posted if you find other helpful studies like you sent to me. I appreciate it very much.

[kpark51 in reply to SOUTHERNCAGIRL]

I can only tell you my experience, and my surgeon and oncologist agreed to NOT do any further treatment. There is MUCH more involved than just VPI with regards to further treatment AND ongoing studies. My doctors told me that it would possibly do more damage than good, due to side effects and was not proven to increase survival rates, which are VERY good with just surgery and small tumors. I had a segmentectomy and a wedge removed.

[SOUTHERNCAGIRL in reply to kpark51]

oh wow! That’s so very encouraging! And to also hear that you had a segmentectomy as well! Because of my other conditions, I have medically I am very concerned about going on something that could potentially cause other side effects. I already take a weekly injection of Enbrel for my rheumatoid arthritis, which has an immune suppressant affect all on its own and it’s something I cannot give up. I also already have a heart condition that I was born with which body extra vulnerable.I’m just not comfortable adding something else to my regimen unless absolutely necessary to try. Which of course is the looking for as I gather information. Thank you so much for reaching out and sharing your experience with me.

[kpark51 in reply to SOUTHERNCAGIRL]

Many doctors no longer classify VPI on tumors smaller than 3.5CM as 1B, due to the fact that there are SO many other things involved, such as pattern, type, solid vs ground glass nodules, etc.....it's NO one thing, and despite all the newer studies, VPI and prognosis remain questionable, especially in smaller tumors.

[SOUTHERNCAGIRL in reply to kpark51]

Music to my ears! That gives me some good talking points when I see my oncologist tomorrow! Thanks again!

[kpark51 in reply to SOUTHERNCAGIRL]

Keep in mind, there is a LOT of controversy surrounding VPI and studies ARE ongoing, as they should be. There are other factors involved, including what the tumor pattern is, size, how much invasion,

"The accurate identification of VPI holds the utmost importance in determining prognostic outcomes and guiding therapeutic interventions for this condition. To precisely evaluate the influence of VPI on the survival and prognosis of patients with stage IB NSCLC, a comprehensive examination of various factors, including tumor characteristics, surgical approaches, and the nature of the nodule, is warranted. However, previous studies have predominantly focused on the prognostic impact of VPI alone, neglecting the exploration of comprehensive factors encompassing tumor-related aspects, surgical techniques, and the degree of VPI."

You are correct in that things change swiftly in research. My opinion is the tumor should NOT be graded based solely on VPI, especially in small tumors.

I don't mean to mislead you, but am sharing my experience. It is an ongoing controversy, as I have dug deeper, but yours sounds like very small invasion.

Wishing you the best. I have done extremely well, without added treatment on a tumor under 2CM with VPI. THAT is my bottom line. I hope your oncologist is up to date on the latest studies, and I would ask him to share those studies with you, so you can make an informed decision. They should take your other medical conditions into consideration regarding any further treatment. I had no underlying problems and they still voted no to further treatment.

[SOUTHERNCAGIRL in reply to kpark51]

thank you. I learned how to read my pathology report and the patterns of tumors. So I know what you are talking about. I’m going to be bringing that pathology report and discuss Histologic findings with the oncologist as well.

[kpark51 in reply to SOUTHERNCAGIRL]

I wanted to let you know I made some edits in my comments, so as to be more precise for you. MY bottom line is that I had 1.7 CM adenocarcinoma, with lepidic and acinar subtypes, VPI, staged 1B, no further treatment. Surgery was May 23, 2017.

[SOUTHERNCAGIRL in reply to kpark51]

my VPI was classified at PL1. Which was explained to me as being a pinhole amount extended through the elastic layer, but did not reach the pleural surface. My surgeon told me that that is the sole reason I was upgraded to 1B when I was previously 1A.

[kpark51 in reply to SOUTHERNCAGIRL]

Same here. Still no further treatment recommended for me.

[SOUTHERNCAGIRL in reply to kpark51]

my oncologist yesterday told me that because of my EGFR mutation, I should go on Tagrisso. This changes the focus from that plural invasion to my genetic findings and that is why she wants to treat me. I also have the TP 53 mutation in addition . Did you have any Genetic testing done back then? I wonder if that could be what is influencing this in my case, but not necessarily yours? I’m so torn about which direction to go in.

[kpark51 in reply to SOUTHERNCAGIRL]

No, no genetic testing was done at the time, due to the stage, I was told, and didn't require testing or further treatment. And if I were to be diagnosed again, it would be considered a new cancer, at this point. My yearly scan coming up next Thursday.....little scanxiety going on, but part of the "deal", I guess.

[kpark51 in reply to SOUTHERNCAGIRL]

Year 8......Scan clean....I am grateful....

[SOUTHERNCAGIRL in reply to kpark51]

So very happy for you! Thanks for the update!

[kpark51 in reply to SOUTHERNCAGIRL]

Wishing the same for you as you get further out from your treatment ( surgery and any other treatment you choose or do not choose to do)

[Melly_Mel]

Make sure you talk with the surgeon about the pain. There are plenty of drugs they can try to see what will help with that and possibly may want to do some imaging to make sure you’re not having complications like fluid buildup or something else. Do not stop telling the doctors about your pain until someone listens to you. The neuropathy will subside over time, hard to know if it will totally go away. I did have some pain after my VATS surgery but it was not bad and once they pulled the chest tube it was far less. My neuropathy presented more as numbness than pain, which subsided over time. The patch of numbness has shrunk considerably and even now, 3.5 years after my lung lobectomy, it continues to shrink. Nerves take a long time to heal and they may not completely be normal again. I’ve been taking Tagrisso for 4 years and have only dealt with the milder side effects (dry skin, brittle nails, mouth sores). Even worse side effects can be managed, so don’t let that turn you off. That’s a great drug for those of us that have the EGFR mutation, and it’s far better than cancer. I’m stage IV and I’m still here. There is hope, don’t give up and talk to your doctors and be persistent. Advocate for yourself until someone listens. Hang in there and you are not alone.

[SOUTHERNCAGIRL in reply to Melly_Mel]

Thank you for this. My surgeon team keeps telling me it's "normal" pain I still have. But, it's been a month and it's still very tight around my chest and my right side is completely numb still from my neck to the bottom of my rib cage. I decided to make an appointment with my general practice doctor who I'm sure would order some type of imaging to look at the painful spots on my ribcage which is very tender to the touch. And you for letting me know about Tagrisso, too. I will try to go with an open mind on Wednesday to my oncologist. I don't have anything for it to shrink as I'm supposed to be cancer free now, so to take something as powerful as Tagrisso will be a tough sell for me due to the other conditions I live with, but I will ask about all possible interactions to make and informed decision. I don't want to be afraid of something that can potentially suppress the recurrence.

[Melly_Mel in reply to SOUTHERNCAGIRL]

Yes, keep an open mind and make the decision that is right for you. Having a team that integrates you as an equal member of the decision making process is key. I believe that for me the Tagrisso has been the thing that has suppressed cancer growth this whole time, but I am at a more advanced stage than you so learn as much as you can and discuss it with your team. And if your team says the pain is “normal” at this stage, then keep finding new team members that will give you the right combination of pain therapy that will allow you to live normally without the “normal” pain being debilitating during this phase of recovery. Don’t stop until someone listens and helps you.

[Jenniferroseolson]

I'm glad so many have responded with more specific similar experiences to yours. My NSCLC was stage IV inoperable, but I had chest tubes and a pluerex catheter, both of which caused nerve damage around the area of my chest that is my braline on one side. This was very painful in the early months but subsided and changed over time: nerve pain mostly changed to an itchy feeling or a feeling of pressure. I tried a variety of medications (lidocaine ointment and an oral med that I can't recall specifically for nerve pain once I weaned off the narcotics and fentanyl patch (which was an absolute Godsend). I cannot wear a tight bra or underwire anymore, but I rarely have more than mild discomfort anymore. Best of luck making your difficult decision about further targeted therapy.

[JanetteR57]

the nerve pain will ease over time. I recently met some newly resected patients who'd had a variety of surgeries for lung cancer - single port robotic through the abdomen (to avoid certain nerves in the back), multi port VATs surgery and none had the open thoracotomy I'd had at the end of 2010. Things have moved on a lot in thoracic surgery for some.

Much more has been learnt about the different mutations and drivers of some cancers but as I tested negative for the only one at the time with treatments available (EGFR) I had no further treatment. Once I got to know more cancer patients (all cancers) through research work and learnt of their side and late effects from other treatments I felt quite thankful I hadn't to cope with those. We're all different and have to make decisions based on the facts and treatments available at the time.

Try not to lie on the side of surgery if you can help it - do the exercises suggested and I'd also suggest walking and stretching further if you can. Regarding wearing a bra, I went for a lingerie fitting after my open surgery and was told to increase the band size so it wasn't so tight on the scar but keep the cut size and wear a non wired bra. I've done this ever since. there is much more variety now in the non wired especially for those with a small bust with bralettes etc. good luck.