- August 9, 2022 at 4:53 pm
I am new to this forum although I am a reader of posts, this is my first time posting. I am hoping to understand if I should have lung surgery or not.
I was diagnosed with a 4.8cm mass in my right lung in Dec 2021 (had melanoma removed from shoulder in 2007). I have been on Yervoy (x4 infusions) and 3 weekly Opdivo since January 2022. My oncologist has been amazed at the response. My PDL1 was 95%. The tumor is now sub-centimeter and I have been referred for surgery as everything else (brain, abdomen etc) is clear.
Here’s the issue:
Surgeon says because of the location of the tumor (central) and the fact that it obliterated my right superior pulmonary vein and artery and extended to my left atrium, I am likely to need
1. A right bilobectomy (upper and middle lobes) or a potential right pneumonectomy.
2. There is a risk of stroke due to the thrombus in the right superior pulmonary vein which extends to the ostium of the left atrium, so requires cardio pulmonary bypass to fix and means I will lose the upper lobe and middle lobe.
3. If clear margins can’t be achieved at the bronchus of the middle lobe, surgeon will need to cut higher up and I will lose the lower lobe too
I am struggling to reconcile this massive surgery with the fact that I have had such a great response to immunotherapy.
My oncologist says it is an option to forego surgery and just continue on immunotherapy. But it seems like the best chance of a ‘cure’ is to go for the surgery.
I am 60, in very good health (still running and swimming) and surgeon says I am likely to do very well post surgery based on my lung function tests etc.
Has anyone else faced this decision?
Apologies for the long post and I appreciate any experiences/advice/data that you are willing to share.
- August 9, 2022 at 5:56 pm
I am not an expert and have not posted for a long time – you can read my earlier posts for my experience – `I hate to give you advice as it may be the wrong advice.
I was in the opposite position and was about to have my third leg surgery for which the prognosis was good or morbidity and after effects should have been ok, but would have meant a number of operations and I think the whole process would have lasted 10 weeks with a week or two rehab at a facility. I can’t remember the problem but I think they had to add a flap or something, i dont know. Anywat I was ready to do it but then my second opinion doctor said why not first try adding tvec to the pembro which I was taking but was not working although progression was local and slow but persistent.
So we did that and after three months it started to turn around and shrink. After a year I could not tolerate well but also it was tiny on the scans and they couldn’t see on the ultrasound so they gave up. Then three months later my scans were clear.
I guess my question to you and your doctor is, why can’t you stick w the treatment that’s working well? Could you do a biopsy to make sure it’s really melanoma still and not scar? Are they happt now it’s so small that surgery is finally viable and possible? Are they worried you miss this chance? If not, then why not keep going w the immunotherapy?
For me a lot depends on the risk of the surgery. For me it would have been lowish risk but an ordeal. I am glad I never had to face it. And also the risks the treatment stops working but maybe just super frequent scans could detect this and then go to surgery immediately if it stops working. I would talk through the risks and options with your oncologist and your surgeons. What would they decide? Are they melanoma specialists? I think I would also seek a second opinion from another melanoma specialist.
My instinct would be to keep w the immunotherapy if your melanoma was in only one place and the meds are working. But to be ready to go to surgery if the shrinkage stops and a biopsy confirms still melanoma. But I would not take my advice I would discuss w your doctors and ask them to recommend a second opinion doctor. Do they have a tumour board for you in the hospital and what does the board think?
Well done on the response, you are lucky, I hope you pull it off!
Good luck mark
- August 9, 2022 at 6:29 pm
Thank you. You are raising great points. It is helpful to understand that you did not opt for surgery and continue to have clear scans. I wish I knew I would be in that group!
My oncologist is a melanoma specialist and is stating it is my decision as he can support either path. He has shared that:
1. Immunotherapy may stop working or I will no longer be able to tolerate it.
2. He shared that with immunotherapy OS is 50% at 5 years, with surgery it could be as high as 90%. But as you know, nobody can tell you your specific odds.
3. Tumor board decided biopsy would be unhelpful in terms of helping the surgery decision whatever the result – if it showed tumor the rationale for surgery remains, if it doesn’t show tumor it could just mean biopsy was in the wrong place.
4. Tumor board think I would do well with surgery because of my overall health and fitness, the fact that I have a single distant metastasis (15 years after first melanoma) and that because of the left atrium/pulmonary vein issue, it needs to be addressed as it is a stroke risk (even though I have no symptoms)
As I write this I feel like I am talking myself in to surgery! It is such a tough decision.
Glad you are staying well Mark and thanks again
Mark made some good points and I am glad you have open communications with your medical team and you understand the risks of surgery vs staying on treatment. I might have missed something but did they do a PET-ct to confirm that the mass is still active cancer vs dead tissue (scar tissue). I had 3.5 cm mass almost same situation as yours and was not given surgery option based on location near major arteries in right lung. Back in 2014 I started on checkmate 067 trial and had reduction of tumor and then ct scans kept coming back stable no change for a couple of years. Mass went from 3.5 cm down to 1 cm. Finally got approval for PET-ct and SUV values came back at zero, so basically no metabolic activity (dead tissue). This could be a good option to do before doing a risky surgery, and if tumor comes back as active then you have more data to make such a big decision as surgery. The 7.5 year survival data for checkmate 067 ipi+ nivo melanoma specific survival is 57%, so if your scans come back as the tumor is dead then immunotherapy treatment would seem like a pretty good option to continue or stop after 6 month period of stable scans. Best wishes!!! Ed
- August 9, 2022 at 7:44 pm
Thank you Ed for your thoughts on the PET SUV values . I had a new PET scan today and will have a CT cardiac angiogram Thursday, then discuss again with oncologist/surgeon.
- August 9, 2022 at 9:14 pm
So after your tumor shrank and your PET was negative you have been NED since 2014?
And thanks for the 7.5 year data on Checkpoint 067
I wonder if the data is stratified between complete responders, partial responders and non-responders? That would be helpful to know.
I am glad you are doing so well.
Hi Gigi, I didn’t have the PET-ct until 2018 as I was on clinical trial and was having scans every 6 week first year and then every 3 months since. I live in Ottawa the capital city of Canada and the health system has some great features and also some limitations and scanning melanoma patients would fall into the limitation section. I was finally approved for a PET-ct 4 years into trial so up to that point I was considered a partial responder since you could see the tumor on ct scans. Based on the PET-ct the trial didn’t change my status to my knowledge since it wasn’t done as part of the trial. I consider that I have been NEAD (no evidence of active disease since early in trial. Funny part of story, I had cyberknife SRS radiation in Oct. of 2013 for 3 small 4-5mm sized tumors in frontal regions mainly of brain. After cyberknife and before starting trial my biopsy proven lung tumor began to reduce in size down from 3.5cm on ct scan. They called it a spontaneous regression at the time, my theory and it is only a theory is that the radiation killed melanoma tumors and antigens were taken up (presented) to my lymph node where T-cell are activated and they went to work looking for similar targets which they found in my lung. Or the lung biopsy (aug of 2013) where they stick a large needle into your lung and take out some tissue had the same effect of killing some melanoma tumor cells and activated the immune system and when given immunotherapy on trial the tumor continue to respond. Now, to your question about data on complete responders vs partial responders vs stable disease. There is data buried in following links, go into tables and graphs from clinical trial that I was on called checkmate 067. https://www.nejm.org/doi/full/10.1056/NEJMoa1709684 https://ascopubs.org/doi/full/10.1200/JCO.21.02229
- August 10, 2022 at 11:29 am
- August 9, 2022 at 8:34 pm
Sorry you are dealing with all of this, but so glad of your good response to immunotherapy at this point. I just put up a post that may interest you: Surgery After Systemic Treatment for Melanoma
The body of the post includes articles that are not really pertinent to your condition directly. However, the lead into the post includes a link to lots of information on neoadjuvant treatment like yours as well as additional links to studies addressing surgery in melanoma that are more like the position in which you find yourself.
Melanoma sucks great big green stinky hairy wizard balls no matter what!!! It is an unpredictable beast. However, there is hope. I was diagnosed with Stage IIIb melanoma in 2003 at the age of 39. Given there were no effective treatments beyond surgery at that time, I did progress to Stage IV with brain and lung mets in 2010. There were STILL no FDA approved treatments available then, so I had my brain met zapped and my lung met surgically removed. (More on that in a minute.) But, 6 months later I was able to join a phase 1 trial using what became known as nviolumab (Opdivo) with two arms. One for advanced melanoma patients with active disease and the other for those of us who had had our lesions removed. We did well. I had my last dose in June of 2013 and have been NED for melanoma ever since. Now – my lung lesion wasn’t exactly like yours – but it was a fairly rare, bronchial tumor – actually in my right main bronchus. Like you, I had to face that if clear margins could not be attained such that the length of the remaining bronchus was not sufficient to reattach my lower lobes I would be facing the removal of my entire right lung, not just the upper lobe. Luckily, my surgeon was amazing and he made it work. Only my right upper lobe was removed. The surgery was not fun. But, I did not end up in the ICU on a vent as had been predicted and was in fact home in 3 days. Recovery was slow but sho! (You can find the story on my early blog posts from 2010 if you are interested.) I’m still here, running, working, playing and LIVING ever since. I didn’t have a lot of options (given the absence of treatments) with a daughter in her senior year of high school and a son just off to college. But, today, I am blessed to still be with my family, including a 6 month grand – an experience that at certain points I never dared dream I would be allowed to experience.
Though it makes your decisions a bit more complicated, I am very glad you have a good treatment option no matter have you choose regarding surgery. I hope these posts help in some way. I wish you my best. Celeste
- August 9, 2022 at 9:41 pm
Thanks for your informative links – so helpful especially to understand data of immunotherapy responders that also had surgery.
Survival Outcomes After Metastasectomy in Melanoma Patients Categorized by Response to Checkpoint Blockade. Bello, Panageas, Hollmann, et al. Ann Surg Oncol. 2020 April 27.
Your story is inspirational – especially being diagnosed so young when treatment options were limited. I am glad you are doing so well, it gives me much hope.
Thanks again for all the information!
- August 11, 2022 at 2:02 pm
Thanks for the articles. The 6.5 year data on Checkmate 067. It is great to have the science. The chart (Fig 6) you mentioned stratifying survival by type if patient response to CPIs is really helpful. I had been searching for something like this!
Now I wish is was stratified by type of response to CPI AND location of metastasis! Maybe at somepoint I’ll find that.
Thanks so much for your help. Do appreciated!
Well, if you want to get into the weeds then I suggest Dr. Love and the web site he has where leading oncologist come and speak about there specific cancer type and leading research in that cancer. Site is called “Research to Practice” You have to join and melanoma is under the category of dermatological. No fee to join, you just have to do the sign up thing and if you want update you can pick updates option. This link is from a few years ago but goes into really detail of understand of what is happening with drugs in the tumor microenvironment. Gets into T-cell and activation and all the geeky science stuff. If you start around 4:30 min point Dr. Luke gets into tumor microenvironment, Pd-L1, tissue staining for Interferon gamma, cold and hot tumors etc. http://www.researchtopractice.com/ImmunotherapyInterviews118/Video?playlistIndex=0#t=4m4s
- August 12, 2022 at 1:31 pm
- August 11, 2022 at 6:20 pm
Bubbles article got me to thinking and I took a look at some old files and came across this!!! https://aacrjournals.org/clincancerres/article/24/20/4960/258157/Baseline-Tumor-Size-Is-an-Independent-Prognostic
- August 12, 2022 at 1:25 pm
Bubbles your blog and resources are so very helpful. Thank you I very much appreciate all the information.
- August 18, 2022 at 9:27 am
I have decided to move forward with surgery on Aug 31. It is likely a right bilobectomy (upper and middle) or right pneumonectomy.
I am fortunate that mediastinal lymph nodes apoear to be clear on PET and CT.
Because my tumor involves the right superior pulmonary vein up to the ostium at left atrium, the cardiac surgeon will be there too.
Just living everyday to the fullest until then and looking forward to getting surgery behind me and getting better.
Thanks for all the help with information and sharing your journey.
- August 18, 2022 at 11:45 am
So sorry you are facing the surgery, but glad you have a plan. Deciding what steps to take can be tough in melanoma world!!! But, once the choice is made you can just focus on getting there and getting through it! Glad the blog has been of some help.
Will be keeping all fingers and toes crossed that surgery goes as well as possible and recovery is swift indeed!! Hang in there and keep us posted.
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