Anyone have multifocal bilateral groundglass alveolar on CT scan?

I had multifocal ground glass nodules initially. They were followed for 4 years when 2 of them grew. After pet-ct and biopsy I had lobectomy on left upper lung; adenocarcinoma. A paired analysis was not done and they classified me as stage 2b (2 nodules same lobe). I also had a wedge resection at the same time and they found aah. However, it's possible I have multiple primary lung cancer, mplc. At this point it doesn't really matter and may never had made a difference since i also had lymphovascularinvasion. I had chemo, pemetrexed and carboplatin and have now finished my 4th round of keytruda (out of 8 planned). I still have multiple ground glass opacities and nodules in my right lung. Last pet showed they were resolving. My next pet is 1/2. I'm on a watch and wait. If the ground glass resolves then great. If any of them grow, then further treatment.

Thank you for your reply. I really appreciate it. I am NSCLC, stage 2B, right lower lobe. I was originally told that surgery was an option immediately however because the mass is up against the rib, it would be best if I did some treatment prior to surgery so that I did not have to have an open surgery but could rather have robotic. I opted for immunotherapy but have only had one treatment which was the end of Oct. Oncologist has only been running tests since. I am scared that if I dont move forward with "something" be it treatment or surgery it will spread. I am due to see oncologist on Friday 12/6. Hoping I will learn some kind of plan. I have had nausea and fevers since the first immunotherapy treatment on 10/31.

Sharon, @sharonsturdivan, It has to feel deflating to not feel good after this amount of time. Immunotherapy is a fantastic treatment for some, but not for others. It sounds like the surgical team was doing their best to be cautious in exploring this treatment prior to surgery. Hopefully the oncologist has a recommendation that works for you, but keep in mind that many people get through extensive lung surgery too. I'm sure it's not easy, but you've already gotten through some tough times. Best of luck with your appointment on Friday. Let us know how it goes. Hugs.

Hi Sharon @sharonsturdivan, Are you feeling any better? Did the oncologist have a recommendation on next steps?

Hello @lls8000
I saw the new oncologist yesterday. What a difference! Here's what I learned.
1) The combo immunotherapy that the I had on Halloween(from other doctor) is NOT approved in any studies to be used for stage 2B, even though I was assured that it was and was also known to cause the ground glass that can be fatal.
2) The last doctor put me on 80 mg of prednisone (for the treatment of the ground glass) for 7 days and wanted to stop it when it ran out without decreasing the dose and just restart the immunotherapy.

The new plan is :
1) Reduce the amount of prednisone slowly over the next 2 weeks.
2) Do one round of the combo immunotherapy (he found where that had been approved but ONLY for one round. Never for 4 as was planned). Will also add low dose prednisone if needed between treatment.
3) Do one round of one of the immunotherapies only 4 weeks before surgery then another round 2 weeks before surgery.

I am finally feeling safe in a doctors hands.

Oh Sharon (@sharonsturdivan) that's great news! I'm so glad that you are getting the care that you need and deserve. It sounds like the new doc is already on top of helping to navigate you through that next round of combo immunotherapy by watching for side effects. Happy for you!

Thank you Lisa! It's been a long ride since diagnoses in July to finding a doctor and office that really care. This is center number 3 for me, with the shortest drive one-way being 2 hrs and the longest 4. Been praying for an office that communicates, doesnt sugar coat, and really cares.
When the first thing a doctor says to you when they walk in the room for the very first time, isn't their name but rather "Hi, I know you drove a really long time to get here and must be thirsty and hungry. What can I get you to drink and snack?" You just might have found a home 🙂

I am sorry for your anguish.
My husband had a ground glass nodule (found incidentally) which was followed/scanned for 10 years with no changes. Then a nsclc mass was found in same lobe > LL Lobectomy, chemo, metastasis to adrenal, now immunotherapy. He opted for immediate surgery, but perhaps if he had seen oncologist first and done some chemo prior to surgery there would have been no metastasis.

What is your plan? We learn from and support each other here. Pls keep us posted.

@abob I am currently on my 3rd Cancer center. I was originally dianosed 7/24 with NSCLC, stage 2b. I was offered immediate surgery but because the mass is located in the right lower lob and resting it's big head against my rib cage, the surgeon said the it would be difficult (maybe impossible) to do robotic surgery. Which would mean open surgery where I would be cut from under the breast to the shoulder blade and have one to two ribs removed. At 73 I really want to try to have robotic so that I can heal quicker, so I opted for pretreatment to reduce the size of the mass first.
1st Cancer center (2 hr drive from home), said only option was 4 rounds of chemo/immunotherapy. When I opposed the use of chemo and ask from SRBT (which was noted as a possibility on my CT scan) or immunotherapy without the chemo, the oncologist told me that I was wasting his time and that I needed to just get the surgery done. At that time I scheduled the surgery (for 9/24) but also reached out for a 2nd opinion. ......next?
2nd Cancer center (4 hr. drive ) said that there was a newer study where I would have 4 round of ipi/Nivo. Therefore eliminating the need for chemo. I was ecstatic as I really liked the doctor I saw so I canceled the surgery. I had my first round of ipi/Nivo on Halloween/ 2024. Here's where things went south. I got pretty sick starting 2 days after the treatment. High fever, new cough with blood, aches and pains, no desire for food and some weight loose. I also had a hard time keeping my O2 higher than 90. I called the hotline but was told that coughing up blood was normal and to use my O2. My primary care doctor was concerned that I might have an infection from my port that was put in 2 days prior to the immunotherapy and ordered a chest x-ray. It showed the mass was cavitating and that I had ground glass in both lungs. Finally got in for an appointment 2 weeks later, which was with a new doctor. He did not do another immunotherapy but rather a ton of blood work, ordered a CT with contrast, and a covid and flu test, then sent me home. Another 2 weeks of being sick........ New doctor wanted to see me 2 weeks later to discuss my tests etc. (I refused to drive 4 hrs and did a online appointment which he was opposed to but did. ). At that appointment he told me that the mass cavitating was what caused the coughing up of blood. The ground glass was caused from the ipi/Nivo, and that it was fluid on my lungs. He prescribed 80 MG of PREDISONE for 7 days. He said that he couldn't see me for 13 days and it would be ok to just stop the prednisone before I saw him. (having had prednisone in the past, I knew this wasnt right!) So I found another cancer center ( 2.5 hours from home)
Cancer center 3..... What a difference! First thing the doctor said was "you've driven a long way today, what can I get you to eat and drink?"...Then he told me "you have not had the care you need. I will be your ONLY doctor, you are family". He went on to say that he called the doctor at center 2, because he was very concerned with the order to stop the prednisone cold turkey. He said he was going to stop it gradually. ( He must have really upset the doctor from center 2, cuz by the time I got home, he had called in a new script for the prednisone with a step down program !) This doctor also questioned the use of ipi/Nivo as he could not find any studies where it was approved for 4 rounds at stage 2B. It had been studied in 2020 but stopped due to side effects. So here's the new plan. 1) Stepping down prednisone to from 80 to 10mg. 2) ONE round of ipi/Nivo while on low dose prednisone. 3) Two rounds of nivo only, 2 week apart . then surgery!
Thank you for reading all of this! It sure is nice to get it out there and know someone on the other end of this computer cares!
One more note: Got a call yesterday from Thyme Care..... Seems center 2 referred me. Anyone else have experience with them?

Thank you for sharing your story. I am so happy that you have found a better provider for you. And it’s really great that you now have an agreeable plan and timeline. Not every case is cookie cutter, and you deserve care tailored to you. We have learned that cancer is mighty tricky, and that ongoing advances are helpful.

My husband turned down pre-surgical chemo bc he had seen its difficult effect on my mother years ago. However his post-surgical chemo turned out not to be bad for him, and happily it resolved the metastatic mass on his adrenal so that he did not need to have the gland removed.

Our cancer center is a research center and we are pleased with his oncologist/team and her decisions regarding his treatment. But the timeliness of their return/follow-up communucation is poor, and I must often be his vocal advocate.

Please keep us posted on your progress. I wish you strength and an easy journey my friend.