lung nodule / proposed surgery / scared and confused

[ghostyinmass]

Hello, thank you for this site. My best to all on this site for health and happiness. I’m not even sure where I may be at on this journey but am certainly scared and confused . In March of 2022 I had a kidney stone and a lung nodule was detected on right lower lobe and suggested follow up in 3 -6 months. My doctor ordered a cat scan in 3 months so June of 22 that nodule was gone but a 1.4 cm nodule was found on left lower lobe ( turned out the scan was done the day after I came down with Covid) had repeated 3 month scans and the nodule remained and got slightly smaller 1.1 cm but in January 23 a new nodule appeared apex left .. was treated as infection as I had been sick again but that one got smaller on next 3 month cat scan in june .. primary dr suggested I see a thoracic surgeon ( primary had always been in contact with thoracic surgeon) went to thoracic surgeon who is well respected and from major Boston Massachusetts USA cancer hospital felt it was inflammatory didn’t look like cancer but wanted his own scans in 3 months .. through the course of these periods I believe I had original covid strand ( March 2020 was sick for several days but nothing too horrible Im a grade 1 teacher.. so around a lot of stuff) for the next 2 years I’ve had the flu , covid, strep. Sinus infections etc .. still feel it was because of that covid and immunity loss through isolation and then close contact however this school year nothing despite all around having all of the above .. now November of 23 my next 3 month scan now with thoracic surgeon .. radiologist states lower nodule stable maybe slightly smaller with calcification probably benign has pet scan been done .. apex looks inflammatory.. surgeon does not believe lower nodule to be cancer nor the apex not a concern at all .. but for completeness wants a pet scan and hopes for yearly scans as I am a 30 year previous smoker but also suggests the idea of removing the nodule .. I was terrified of that suggestion but felt he was just giving options but surprised as I felt it went from 0 to 60 .. in December I have the pet scan

it lights up intense lower lymph node ..moderate and faint on both lung nodules and some other spots .. at meeting dr still believes it’s not cancer and he’s not convinced that I have cancer and did not agree with the summaries of the radiologist of pet scan and repeated that I do not have cancer but wanted biopsy of lymph node to start as he cannot dismiss the pet scan he also stated he wished he had never ordered the pet scan and wrote most of that in his notes .. I took all to be positive but scared .. lymph node biopsy long wait but several calls from dr stating he believed that to be benign. At meeting with dr to discuss results and next steps he believes I should have surgery to remove the nodule and still states he believes that it will be benign .. my long story is why remove the nodule if he believes it to be benign versus watch it.I’m a healthy and active 56 year old woman who’s very sad that I smoked for as long as I did and scared if I have surgery because of my smoking there’s a chance I’ll have more nodules and why take away my lung now if he does not believe it to be cancer. I also don’t believe the dr is being “ nice” by telling me things I want to hear like he doesn’t think it’s cancer . I feel confident in this surgeon but am confused at the same time .. is it the uptake on the scan and my smoking history resulting in this recommendation . He also offered a biopsy but concerned that not enough would be collected to be conclusive. Perhaps my hopes of being sent away for a yearly scan are now gone and I’m in frightened and in denial mode.. any advice or tips would be appreciated and. please know I am truly grateful that surgery may be an option for me if I do have cancer as when I think rationally my years of smoking this diagnosis should I get it should not come as a surprise. If I only knew then .. thank you for any help, support ideas of comments; god bless and sorry for how long this is.

[Jenniferroseolson]

I am sorry for all you are going through right now. This sounds like a you have had a lot of professionals helping to monitor you. While this might be very scary to have the nodulea removed, you will likely do very well with the procedure and know more by doing so. I personally am not sure why a petscan might light up for something that is benign, so that is the piece of your story that is confusing to me. IF and only if these nodules are cancerous, you will be in a great position to treat and cure this if it is early stage. You are always entitled to a second opinion if you would feel better having one, but if radiology report and oncology both recommend you get a biopsy, do that first while trying to get in somewhere else. The process is painfully long with waiting. Best wishes to you

[ghostyinmass in reply to Jenniferroseolson]

Thank you for your kind response and advice. I truly trust my dr and the hospital he’s affiliated with and he was correct on the lymph node being benign and hope that’s true of the nodule. I am not sure how I feel about the pet scan report and summary but the uptakes are what they are and I cannot speak to that but my lymph node tgst was biopsies was intensely active and it is benign. I don’t know what the difference is for the mild and moderate lung nodule uptake means other than dr does not think it’s cancer, but I am being recommended to remove it surgically. From the small amount of information I have read about the removal many have fared well and in some cases cured and their stories are giving me hope. I do feel that my dr is suggesting the best course of treatment in identifying and possibly treatment if that’s what is determined. Perhaps my hope is still that the dr is correct that it is not cancer and I should be watched and that I should not have surgery but can’t wrap my head around the recommendation of surgery. This is all very fresh and perhaps when I process more I will be ready to confront it with strength and hope versus uncertainty and fear. Thank you again for your kindness…

[JanetteR57 in reply to ghostyinmass]

it's often difficult when different professionals give us different opinions when we're only the patient and often unfamiliar with many of their terms used too and reeling with what it might mean for us. There are cases of 'false negatives' and 'false positives' with PET scans and have been cases where nodules and lesions have been removed surgically and turned out to be benign - these are termed 'benign resections' and in recent years have reduced dramatically due to biopsies.

When my lesion was found, it showed clearly on chest x-ray, CT and PET scans and the thoracic surgeon said he didn't know what it was but as it had been recently found, he wanted to remove it surgically, send it away then determine what it was and any further course of treatment. I also had to lose a lobe from my left lung. Very few people have the whole lung removed - called a pneumonectomy - and many now have less than a lobe removed.

The left lung has 2 lobes and the right has 3. Some now have what's called a wedge resection or 'segmentectomy' to remove smaller masses. Mine was 7cm and turned out to be malignant but I wasn't given that news until January 2011. I had open surgery (now the majority is keyhole/minimally invasive) so recovery can be quicker and less risky but even so, I was back at work, swimming and active by the end of March 2011.

I've been involved in research since 2013 and in recent years, the. incidence of lung nodules has been much discussed now some countries including the UK has started targeted screening for lung cancer and found that many more people have lung nodules than previously believed. The vast majority of nodules do not develop into cancer but some can become inflamed with infection hence the use of regular imaging to monitor any progress or reduction in size. One of the problems is that very small nodules show up on images - most of which are harmless and as your surgeon has pointed out, are often too small to even get enough tissue to obtain a biopsy which is possibly why he's suggesting removing it. The lymph node biopsy being negative shows whatever it is it hasn't spread into the lymphatic system which is why he believes it to be benign.

It's always important to discuss your fears/concerns and ask any questions of your clinical team as they can give answers based on your situation. We're all different and react differently to news as well as in different health situations.

Being young, your ability to recover from surgery if you're relatively fit should be good. I was 52 and fit and active and a never smoker so I was told my recovery should be relatively quick but also that it was to some extent in my hands, that keeping active to develop the lungs was important as sitting/lying around would not help the operated lung recover.

I wouldn't underestimate the anxiety likely on a 'watch and wait' or 'active surveillance' pathway - sometimes taking physical action to be certain one way or another can be better - which may be why your surgeon is suggesting it for you. Sometimes our fear and anxiety is about the procedure itself and many who are eligible for surgery in the UK (the majority are detected too late for it to be possible) decide to have treatments like radiotherapy and chemotherapy instead which I've never quite understood as the side and late effects from both of those can be considerable.

This information about lung surgery may help about what might be involved if you went down that route. It was pulled together by my local specialist thoracic centre then taken up by Roy Castle lung cancer foundation (the UK's major lung cancer charity). roycastle.org/app/uploads/2...

good luck whatever you decide.

[dunnellon]

Hello ghostyinmass,

I was in a similar situation in 2020. First of all, get a second opinion from someone not in the same group, even a third, and remember surgeons want to practice surgery. If the consensus is that the nodule should be removed, make an appointment with your nearest Cyberknife (London has one and Birmingham) and get an evaluation from their oncology radiologist. Take your discs and reports along. You are entitled to a free disc of your CT's and PET's and a copy of the report.

I had 4 Cyberknife treatments (in the USA), each about an hour long, in a 2 week period in 2020 for a 2.3 cm nodule that was confirmed by biopsy to be an adenocarcinoma, and as of my 3rd year, the nodule is gone. It was painless radiation, no stitches, no side effects but a little fatigue. If your surgeon tells you that you're not a candidate for Cyberknife, make the appt. anyway and talk to Cyberknife directly. The surgeons will always tell you that surgery is the 'gold standard' for removal. Explore your options and do your research. Wishing you the best outcome!

[ghostyinmass]

Thank you for the information. I appreciate the kindness and information on the options and positive outcomes you have had. I'm beginning to accept that I have something that needs resolution and agree with Janette that the time in uncertainty is anxiety provoking and has been a different challenge and to continue this way is no way to live. I will be certain to ask more questions at my next visit which I anticipate being next week. Hopefully this is an early finding and surgery will be effective and will not compromise my quality of life too drastically. Your support, advice and links to information are greatly appreciated and have been a tremendous help, more than I can express. My family and friends are so supportive and wonderful but hearing from others has eased my mind somehow. Thank you -

[KitKat1954]

Hi ghostyinmass,

I have had robotic surgery of my left lower lobe in 2017 at Lahey in Burlington for stage 1 adenocarcinoma, which is a slow growing cancer. Several months before that I had MRSA Pneumonia and was hospitalized for ten days. A CT scan was ordered as a follow up of the MRSA and that is when a glass opacity nodule was discovered. I may have been susceptible to the MRSA due to the cancerous nodule. Since then, I have had some other nodules, that have been watched. I was told they see these nodules all the time and can come and go and said not to be too concerned about them. One was conspicuous but 2 years later it was deemed less conspicuous. From what I understand, if it is growing, that is not good and is very concerning. Nodules that are not growing are considered stable and are usually just watched.

It sounds like they are following you very closely, which is great, but I would get a second opinion. Your doctor seems to be somewhat all over the place without providing a clear recommendation. My current pulmonologist is at Brigham and Women's who I highly recommend. The major hospitals in Boston are all great, but each one excels in their specific specialties differently. It seems Brigham's and MGH is the best for lung issues according to the U.S. News and World report in Massachusetts. They will also refer you to Dana Farber Cancer center if they think specialized testing should be done. In my case, I was sent to see an Immunologist who did very extensive testing (for immunity). It was discovered I had MBL which was the reason I had so many infections. Also, I would like strong evidence before someone removes part of a vital organ.

In addition, a few years after my surgery I was diagnosed with bronchiectasis, a serious lung disease. It took me a couple of years to be stable with that, and it was only after I went to Brigham and Women's that that happened.

I hope this helps. Hang in there, it will get better. Good luck.

[ghostyinmass]

Thank you,

I am being seen by a surgeon from the hospitals you mentioned and do trust him and feel confident in him. However I am struggling with removing the nodule if he feels its not cancerous. Again, perhaps the uptake values of the ct/petscan is what's driving the recommendation for surgery as the numbers can't be denied and the nature of biopsy possibly being inconclusive. Is it common to have surgery before having a biopsy and is a 1.1 small in terms of getting a good size sample? The nodule is 1.1 cm left lower lobe and wonder if the location is a problem with the biopsy. Is it possible to do a surgery to see if its cancerous and then proceed only if it's cancerous, I thought I read somewhere this was done, but thought I asked something to that effect and was told it was either surgery or a biopsy. I am sorry that I'm going round and round. I'm probably still in denial because I do trust the surgeon and I'm still in the inconclusive zone and surgery might be best the decision to have it gone and to know what it is, my hubby agrees with surgeon 😔 Thank you again for your experiences, support and advice.

[Joyologist]

Hello. I am/was pretty much in the exact same mindset and situation as you. Two years ago a lung nodule was as found in my upper right lower lobe, a rounded nodule with a a smaller spiculated nodule. Initially I had a PetScan with a 1.2 uptake and a biopsy recommended by a thoracic surgeon. At that time I decided to watch it and was scanned every 3-6 months. In educating myself with Go2’s information I also saw an interventional pulmonologist. He recommended the biopsy by interventional radiologist. It was an easier place in the lung for the latter. I was scanned for about two years but could not just keep getting scanned because we still just did not know what it was. I was so against the biopsy or any intervention but my peace of mind had to be relieved at some point and to have the courage to move forward no matter what. Eventually I did the biopsy which showed benign but the surgeons said the biopsy is such a small sample and the way my nodule looked “spiculated” was still suspicious. I then had another PetScan, the nodule grew a bit and the uptake was a bit more too. In speaking with my general practitioner’s PA and the surgeons PA both of them said my surgeon was on the conservative side of surgery so if he is recommending it there is a good reason. It was their comments (both women by the way) that truly helped in my ultimate decision of surgery. I had a second opinion from another surgeon and he said it had to be removed. Same recommendation. My robotic VATS surgery was just over two weeks ago. I had never had any surgery so was again so fearful of that and not really what was in my body. It took time but I finally said yes. We are all different emotionally. I had a wedge resection where the tissue was sent to pathology for testing as I was under. Pathology determined that the nodule was not cancer but some sort of infection. I’m a 53 year old woman, in decent shape and figured I had to be smart about this while I’m young and in good health to recover. My lungs feel great it’s the incisions that are a bit uncomfortable. I understand it will take me several weeks to feel like me but I now have piece of mind and can let go all of the questioning I had for two years. Emotional Stress is not good for our health so that is also now relieved for me. Ultimately, I did what was and felt good and best for me and educated myself for two years. I would suggest the buddy program that GO2 offers. It helped me to have questions answered by someone who went through the surgery.

[ghostyinmass in reply to Joyologist]

Dear Joyologist,

Thank you for sharing your experience it is amazing how similar our experiences are. I am so happy to hear that your wedge resection went well and you have been given the the most wonderful news that the nodule is benign along with the piece of mind that comes with!

I too decided to go forward with the wedge resection on 1/16/24 so shortly after my post and I too was given incredible news that mine was also benign, some sort of infection as well. Had it been determined in surgery that it was malignant a segmentectomy would have been done. I am so blessed with the outcome and an unbelievable weight has been lifted and the peace of knowing one way or another cannot be described in words! I have only recently had surgery a kidney stone ablasion and then an appendectomy for a polyp however none of these surgeries were potentially life threatening, altering and did not involve a vital organ. So while I've been overall very healthy these experiences prepared me to not fear surgery it was the fear of this type of surgery and what was at stake and of what the outcome might be but but in reality the constant unknown was taking a toll on me mentally and I agree with you and others that effects our overall health.

My decision to move forward with the surgery while beyond frightening was really the only decision in order to know what the nodule was. The nodule while getting smaller was still at a questionable size for continued surveillance, being spiculated must have caused some pause and then combined with a pet scan with moderate uptick with a strong radiologist report my surgeon felt it should be removed so we would know what it was and could take care of it early should it be cancerous and early when surgery was viable and I was healthy to withstand it. With that said although my thoracic surgeon was very cautiously optimistic that it was benign from the beginning and the nodule was getting smaller he did feel that it needed to be removed which was hard for me to understand. I also have another nodule which he has not been concerned about and hopefully that won't change and will celebrate in the blessing I have in the now moment!

After my surgery my husband texted me that my surgeon informed him right after the surgery that it was benign so I knew very early out of the pacu and in my room before being able to see anyone that it was benign. The sheer relief in knowing and taking an action took away all the stress and minimized any pain I had and taking action was a mentally positive step for me and sometimes the not knowing and being in the dark is a hard and lonely place to be. I wish I had sought out the buddy program on GO2 at some point in that year and half of getting cat scans every 3 months as perhaps I would I have had this resolved sooner.

I am now 5 weeks post vats wedge resection so a few weeks ahead of you. At the 2 week point I felt good but naturally uncomfortable on that side but was improving with what I would describe as a little less than baby steps but at week 3 I really noticed marked improvement. 1 week out I began walking in my neighborhood and my lungs felt great really right from the start but I was taking quite a bit of Ibuprofin and Tylenol and 1 oxy at night. At my 2 week post appointment I was still sore but nothing unmanageable, a few nerve type symptoms and tender and PA prescribed gabapentin as at that point I had a lot of discomfort running down my shoulder blade on the side I had surgery on. I did not like that medication at all so I only took it the one time and my daughter who is a nurse suggested I ask for a lidocane patch . I began applying icy hot max lidocane otc roll on before reaching out and it worked wonderfully for me so I did not ask the PA/surgeon for anything. At 5 weeks I am taking 2 ibuprofin in the morning and 2 Tylenol at night and the lidocane roll on now 1 x a day and have learned that its the icy hot that seems to work versus lidocane. I stoppede the oxy at night around that 2 week point. I am walking 3 miles a day at a good pace. I play tennis but do not anticipate that till at least 8 weeks. I hope to try swimming at 6 weeks (next week) and I think that will let me know when tennis might be there for me.

From the start of this I only saw my primary care when my nodules were identified incidentally for a kidney stone and then a little over a year it was suggested that I go to a thoracic surgeon. I am fortunate for the recommendation of my surgeon as he is a top thoracic surgeon (I think that too) from a renowned cancer center in Massachusetts and a bonus is that my daughter a nurse knows of his reputation through the hospital she worked at and spoke highly of so I felt very comfortable with him and did not seek a second opinion.

This is a very long post so sorry for that but thank you again for sharing your story which encouraged me to tell mine. This site along with others has been a tremendous place of comfort, information with the kindest and strongest people I have ever encountered. I hope that our stories help others as well. I'm not great at these sites so I'm not sure if this public. If I can help with any recovery or surgical questions please don't hesitate to reach out and hopefully I can shorten my response.