Leaderboard

Two years in with that diagnosis. Tagrisso for two years now. That stuff works fast. I didn't do any radiation//chemo for lung cancer. Mayo Clinic in Rochester MN also did not prescribe radiation/chemo. I had mets in the brain, rib and back. You wouldn't even know I had cancer, except when I nearly died from Chemo/Radiation from a seperate cancer I had in the Esophagus which was Stage II. Lucky me to have Stage IV Lung and Stage II esophagus.

Thank you Tom. That information is very helpful. I haven't had a chance to be scared about the surgery yet bc I am too busy being scared about this PET scan. I am sorry to know you this way but it is very good to know you have been thriving for so long with this. Aimee

Aimee, Welcome. Be assured, none of us are sure what to say about a potential cancer find. The PET scan results should be instructive. Here is information I provided years ago about PET scans; how they are administered, and what the results mean. The scan should tell you if the nodule is displaying metastatic behavior and second, and perhaps more important, if your known nodule is the only one. If it is metatistic and the only one, then surgical removal of a lobe is a good course of action. I had my entire right lung removed, more than 20 years ago and I've lived an active life (age intersection is slowing things down now). Your quality of life should not be affected missing a right lower lobe. Two cautions, if the PET scan shows metastatic activity, please insist the nodule receive both a hystology and biomarker biopsy. The hystology procedure is a microscopic examination performed by the pathologist to determine the type of lung cancer, and the biomarker biopsy determines if your type of cancer is treatable by new and effective targeted therapies and or immunotherapy therapies. Lung cancer is so dangerous because it often recurs, even after successful surgery (I had 3 recurrences after my surgery). Knowing biomarker results puts you ahead of the game if you have a recurrence. Second, have a consultation with a medical oncologist idealy before or if not very soon after your recovery from surgery. Your medical oncologist should track you after surgery ordering necessary postoperative scans and screens to check against recurrence. Most of us can only have one surgery and if cancer recurrs, we look to a medical oncologist for treatment. So, here is what to say about a potential cancer find: if I can live, so can you! Stay the course. Tom

Kelly, So sorry to hear about your mom. You covered a lot in your post and much of it is around the "malignant pleural effusions". These are serious indications of difficult prognosis. You need to sit with the leader of your mom's medical team and have a frank discussion about being properly informed of your mother's disease, diagnosis, treatment, and prognosis. If they won't do this then you need to request different doctors that will properly communicate with you and your family. Once you can get that issue resolved you can then better understand what is happening, and what is necessary to do. Please update us on your progress in this situation. Lou

Thank you for your feedback last time! I finished four rounds of chemo and it’s been three months since I started treatment for Stage IV lung cancer (chemo and Tagrisso). I just completed MRI and PET scans. Brain MRI showed the met is gone. Other MRIs show some abnormalities in my spinal cord and bones are showing improvement. My PET scan showed decreased but still metabolic activity in lung and pelvis. Is this expected? I was disappointed that there is still active cancer in my body after chemo and hoping that I wouldn’t have to do radiation.

Thank you all. I am taking in all the information little by little. I appreciate the info and the support. Aimee

You've received great information Aimee! I'm glad you found this site. There are many knowledgeable people on here. Sending support. When you have more specifics about your situation you can learn more from some of the past posts. Likely not to get ahead of yourself now though. First things first...

Aimee, Tom has given you great information and counsel. For my part I'll share a blog titled "Thoracic Surgery: Tips and Tricks"....and it can be found here. It has information for pre surgery preparedness, handling the hospital stay, and post-surgery recovery. You can also post any questions you have here and we're happy to help you by sharing our personal experience. Lou

Hi Kelly, So sorry you and your mum are going through all that you have. I am unable to answer your questions - I don't have that knowledge or experience. Just want to send support. I hope you get more answers soon and your mum can indeed be discharged improved soon. Hoping others will respond before too long that may be able to respond to some of your concerns....

Just want to send support, Anthony. I'm new here, not diagnosed (yet?) with rescan in early July. I'm slowing finding my way around the site and trying to read and respond some to new-er posts.... please keep us updated on how you're doing....

Hi all. I am Aimee. 52 yo. Here's my story... 2/18/2023 I had a stroke. I am fine. No lasting effects. During the stroke protocol a CT was done and a 1.6cm nodule in my lower right lobe was incidentally discovered. Rescanned in March and October-no change. My doc (a thoracic surgeon) said he thought it was nothing, etc. Fast forward to last Tuesday. Rescanned and it is now 1.9cm. Now he doesn't think it is nothing. I am scheduled for a segmentectomy on June 5. Had a PET scan this morning. No results yet. I am terrified.

Hi, After some advice or experiences. The story is below but my mum was admitted to hospital under no particular doctor. They found her a lung doctor and we are being given no information, her oncologist hasn’t visited once and the diagnosis she was given at the beginning of the year is now the complete opposite and no one has bothered to explain what she now has it’s like a “you’ve been there done that situation” but she hasn’t and she has no idea what she is dealing with. My mum (64) had a total thyroidectomy in December last year. No lymph nodes in her neck showed any signs of active cancer and there was only a small cluster found near the muscles in her shoulder which were completely removed. A scan after surgery showed spreading to her lungs (several small spots under 1cm no active cells). Treatment is Lenvatinib with a hopeful outcome to block them from spreading anything further and potential shrinking / disappearing. She started this in March this year and has 2weeks on it before developing a cough. Her oncologist took her off it and onto some antibiotics in case she had caught something (cough is apparently not a side effect of the drug). Antibiotics didn’t clear the cough up so she was prescribed a suppressant which helps. She then developed shortness of breath and it got worse over the next few weeks and she admitted to hospital on the 8th April and has been in since. It was finally discovered she had pleural effusion and drained a massive 4L (2 from under each lung). Her breathing has gotten a lot better. She has days where she is really good and days where too much activity has tired her out. She is also now a lot more mobile again (hospitals keep you in bed etc), showering everyday and going for walks up the corridor unassisted with the physio. So somehow we have gone from spots under 1cm no activity and hopefulness the Lenvatinib would keep them inactive and not spread to stage 4 MPE. The news that she won’t come out of hospital to the news her medication seems to be working quickly, producing very minimal fluid output and planning for discharge home by the end of the week. Emotions all over the place! She has only just gone back on her medication less than a week ago after being off it since half way through March. She still is still on oxygen at the moment but they have dropped that and are hoping to get her home without it or to a point she can use it if and when needed. So that’s counting for some of the shortness of breath as well. Will the cough get any better? It gets quite bad and she has a suppressant every 6hours… She has gone from fun, playground/park nanna for my grandkids, working 7days a fortnight and babysitting to such horrible odds and it’s so devastating. Everyone’s story is different I know and we are so very thankful she is still here just after some experiences or questions I should be asking? We really are getting nothing from her doctor.