Treatment Decision

[Beepers7]

Hello Friends,

Diagnosed 3A NSC. After completing chemo radiation treatment my PET Scan showed good response. My main 3mm tumor reduced and no current activity. Lymph nodes also inactive.

Before treatment my oncologist said no surgery, but immunotherapy was preferred treatment. My PDL-1 tested 0. A thorastic surgeon, pre treatment, said surgery a good option.

After much reading I see 3A surgery is a very controversial subject.

I meet with oncologist this week to discuss next step. I’m healthy @ 72 and tolerated chemo radiation treatment well.

Looking for anyone with experience or suggestions concerning surgery for 3A.

Thanks, SteveO

[Denzie Moderator Volunteer]

I have no experience but do know that surgery is only done with curative intent. I look forward to seeing what others have to say.

[Beepers7 in reply to Denzie]

Thanks Denzie 💕😇

[Beepers7 in reply to Beepers7]

Hi Denzie,

Question, My lobectomy upper left is scheduled for 3/27. As mentioned earlier finished chemoradiation early February. I recently asked my oncologist about Targeted Therapy in my case. She said they didn’t test it because not enough tissue at biopsy. Why would they not do that before chemoradiation treatment started? I know this is past business but wanted your opinion. Thanks

[JanetteR57]

I recently attended the British Thoracic oncology group annual meeting and also the Royal Marsden essential lung cancer update at the end of 2019. Both featured sessions on the optimum way to treat stage iii non small lung cancer and as you say, there is considerable variation in the order of the treatments given (multi-modality usually - chemo/radiotherapy and immunotherapy and sometimes surgery/sometimes not). One held a debate with every clinical discipline represented asking if there was a place for surgery in this patient group and the overwhelming result was 'yes'. If you have tolerated existing treatments and are fit enough for the surgeon to suggest surgery, I'd be very tempted to consider it seriously. I had half my left upper lobe removed (by open surgery) in Dec 2010 and was back at work and swimming 3 months later. Everyone is different and mine was stage 2b but now due to IASLC reclassification of the specific type I had and its size ((7cm), would fall into stage 3a. As you didn't have the result for immunotherapy, surgery would seem a viable treatment option. I'm unsure which country you're in but in the UK, keyhole surgery has now overtaken open surgery for lung which means even less fit patients who are eligible have good results. There is some good information available on Roy Castle lung cancer foundation website under 'treatments' 'surgery' 'my lung surgery booklet' which has very recently been updated. hope this helps.

[Beepers7 in reply to JanetteR57]

Thank you for the valuable information Janette. I’m live in USA. The surgeon is very positive and my surgery is now scheduled for later this month. I think he will use the VATS procedure, with 3 small incisions. Thanks again. I will report my results after surgery. 💕🙏

[JanetteR57 in reply to Beepers7]

That sounds good. Incidentally there is information on the Roy Castle website about all the different types of treatments that are updated regularly, written by clinicians and reviewed by a patient panel (I'm one of the reviewers) and has images and suggested questions to ask the medics. good luck with your treatment and keep us posted please on your progress.

[Beepers7 in reply to JanetteR57]

I will certainly check Roy Castle website. Thanks again for your response and the important work on cancer you do.

[Nay2018 in reply to JanetteR57]

JanetteR57, so glad I opt to read your feedback to Beepers7. I have been 3A NSLC since 2015. My care team offered me chemo/radiation treatments. After 4.7 years I still experience side effects which sometimes puts my perspective on what if next choice is just as bad as the first one. I have read as much as I can about lung cancer but still not as active as I would like to be. I pray constantly though for the medical profession to get better with time. Some choices for patients like me in the USA has become better during the last few years. It is websites like this one that empower us to be our advocates. Thank you so much for sharing your knowledge with us. It is posts like yours that feed our hope. My biggest dream is that no one especially older adults already challenged with other ailments should not have to deal with such horrendous side effects for the rest of their lives. Again my sincere thanks for contributing your information.

[JanetteR57 in reply to Nay2018]

Thank you - glad if it was useful. I'm constantly learning - until my own diagnosis and treatment in Dec 2010/Jan 2011 (diagnosis) - I knew nothing about lung cancer but when a close friend died from it just months after my surgery I went online and found many men in particular weren't properly investigated as his symptoms were a bad back/shoulder so he was put through community physiotherapy, painkillers etc all without imaging. By the time it was detected it had spread throughout his body and he only lived for days after diagnosis. I was more disgusted that less than 5% at that time of all cancer research was invested in lung cancer so I started to raise funds in his memory for our UK lung cancer charity (Roy Castle - named after a popular entertainer who spent his life playing jazz in smoky environments but had never smoked). This resulted in being invited to their conference in Birmingham then applying for other advocacy opportunities. These days I'm a regular attender of conferences (several a year) and sit on a number of UK and European committees. I wish I could shout out how the number and type of treatments has increased considerably and the outcome for patients is so much more hopeful. Unfortunately not all medics especially if they're less involved in cancer are aware of these developments. What's happened in lung cancer research is that the global collaboration with science and medicine is improving patient options as once something is proven through clinical trials to be more effective than the standard of care, then it is quickly adopted usually by European Medicines Agency, FDA and NICE (for UK). The most real example I saw of this was attending a conference at ESMO when the results of PACIFIC trial showed that immunotherapy significantly improved outcomes for certain patients and within months, it had become standard of care. The other thing that changes is the knowledge of the different types of lung cancers and the technology improves and gets cheaper to test more of the genome/genetic make up of the biopsies to understand the science/biology better. There have been changes in the order and dosage of conventional treatments like chemotherapy/radiotherapy so it's always worth asking if there is only one option as many patients can have alternative types if one sort creates too many side effects. It's such a fast moving area - always worth discussing any options including any clinical trials with your medical team who can be specific about your particular case. take care

[Denzie Moderator Volunteer in reply to Nay2018]

Nay2018,

Much of what you wrote resonates strongly with me. Have you considered joining the Go2 Foundation in DC this June? You will be able to meet with your reps and share your story and concerns with them. There are going to be travel grants available. Please consider it.

go2foundation.org/get-invol...

[Beepers7 in reply to JanetteR57]

The surgery booklet was excellent and very helpful. Thanks again Janette

[JanetteR57 in reply to Beepers7]

That's good to know. Our local tertiary centre (specialist respiratory centre) had a similar booklet and DVD they gave out to patients so these were combined with the Roy Castle version a few years ago. These booklets are regularly updated with new clinical information and reviewed by a number of us on a patient panel. the aim is to give accurate and trusted information to patients and any other interested parties at a time when so much information is outdated and less informative in terms of language. by showing images, patients have said it enables them to be more prepared for what is to come or if already had surgery, what might be reasonable milestones to achieve. good luck.

[Nay2018]

Beepers7 I hope everything falls in place for you. Fortunately, lung cancer patients of today have better choices than 5 yrs. ago. This year will be 5 yrs since my diagnosed. My team never offered surgery due to my biomarker showing mutation. I pray that all goes well for you.

[Beepers7 in reply to Nay2018]

Thank you for your kind words and prayer. It means a lot. I hope and pray you continue to fight on and enjoy each and everyday. Cancer diagnosis changes our outlook and makes us appreciate our daily blessings. No one has the promise of tomorrow. 🙏🏼❤️

[Gatorb8]

Hi there! I was also diagnosed 3A last May and I had my ll lobectomy in June. It was definitely the right decision for me. Only slight discomfort for 3 weeks. I just wanted to get rid of my cancer. They found micro cancer cells in on lymph closest to my ll lung. That was also removed. Because of this I had 4 rounds of chemo and have felt very well since that was over 5 months ago. I think surgery is the best route to be sure that you get all of the cancer. My doctors said I have a 50-60 percent chance of being cured. So far so good. They would give me lower chances with out surgery and chemo. I had VATs procedure and recovery was quick. You have nothing to loose!

[Beepers7 in reply to Gatorb8]

Hi Gatorb8,

So happy to hear from you! Your testimony brings hope and confirmation of my doctors decision for surgery. Like you said, “just want to get it out”. Be strong and wishing you continuing success. Thanks again for responding. ❤️

[Feelingblessed2013]

From what I have heard more than a few times surgery is still the "gold standard" of cancer care. I had upper left lobe removed through VATS surgery in July 2013. I was stage 2 NSCLC. I healed nicely and went back to my part time job. In April 2018 they removed the upper right lobe for stage 1a NSCLC. In hindsight, I wish I had done some research, and asked many more questions before letting them take a second lobe.

[Beepers7 in reply to Feelingblessed2013]

Hi Katherine,

Thank you for your response. I hope to one day also be encouraging other cancer victims with my experiences. It’s an important mission to help inform others and give them true life experiences. May you continue to move forward in the fight and not look back. Proud of you🤗❤️

[Feelingblessed2013 in reply to Beepers7]

Thank you. I am proud of you also. I am proud of all of us for having the inner strength to fight this fight.🌹🌹🌹🌹🦋🦋🦋🦋🤗🤗🤗🤗

[cmilashoski]

I had 3A lung cancer and I did the chemo radiation and the surgery it's been 4 years and where my scar is from the surgery I am in alot a lot of pain it was a pretty rough surgery but all my scans have been Clear since I'm 57 if I had a choice I wouldn't have done the surgery but I think it's saved my life still have lot of pain lot of nerve pain but they say that surgery is usually your best option for survival😷🤔🙏

[Beepers7 in reply to cmilashoski]

Sorry to hear of your continued pain, but like you said it saved your life. Hopefully the pain will subside soon. Stay hopeful and strong🙏🏼💪

[Getoutofme1239]

Hello Beepers7 , I was diagnosed with StagelllA NON SMALL CELL SQUAMOUS CELL CARCINOMA 27 months ago. I wAs 53 yrs old and my cancer was found by accident. Other than ongoing back problems, I was very healthy. Which played a huge decision in my having right upper lobe removed after combo chemo and radiation treatments. Surgery took 7 hrs and the Surgeon was confident he made sure he took his time to remove all lymph nodes on right side as well as the cancer believed to be inactive after treatments. He said he got 99% and was pretty certain I was free of Cancer. 3 weeks post OP , I was told to get to the ER because I was coughing dry non stop and out of breath just from speaking . Got there in the nick of time, Was told I was about to go into Cardiac Arrest - Unfortunately, I developed Pericarditis ( fluid in sac around the heart) is a side effect that could happen usually few yes down the road from radiation. . They drained the fluid and for some reason I kept presenting with same symptoms however the 2 Nd and 3 rd time I was admitted to the hospital they could not figure it out. My creative levels were extremely high so they knew something was wrong , The cardiologist called oncologist to ask if I could be scanned again . After much persuasion, oncologist agreed to this but stated the Surgeon was cwetIn I was free of cancer. Well, that was not the case, seems I had lymph nodes pop up on left right middle lobes and mediastinum . Soon after the clavicle area ,, I’ve been enduring treatments non stop since because every scan I have shows more . Had a scan over 3 months ago showed lymph nodes pop up in my abdomen . They switched the chemo 4 times so far, latest Scan showed all lymph nodes increased in size the abdomen tripled in size with chemo and in 2 months ! I keep praying for that R word REMISSION , oh I’m also a 0% forPDL marker , So , I will say that everyone is different and my Doctors are considered some of the finest world wide . I live in Philadelphia PA and am 3 miles away from Perlman Center for advanced medicine University of PENN HospitAl - to date I’ve had 80 radiations in different areas and lost count of chemo, anyway, I will tell you I’ve always been a fighter and will continue to! In my case, think there is much bad luck! Praying you have great results God Bless!

[Beepers7 in reply to Getoutofme1239]

Thank you for your reply. You are one strong individual. So sorry you have to endure such pain and agony. Sometimes this life in the flesh is just not fair. I pray the days ahead will bring you healing and some joy, you deserve it. 🙏❤️SteveO

[Beepers7 in reply to Getoutofme1239]

Hi,

Just reviewing your response a couple months ago. Hope and pray your doing better since that writing. You have endured more than anyone. You are so strong and determined. My love and prayers go out to you. SteveO ❤️🙏

[Getoutofme1239]

Please let us know how you are making out when you are feeling up to it! Praying all is well for you!!!!