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Hey all, just wanted to follow up. Had surgery Monday. As diagnosed it was adenocarcinoma. Dr removed a wedge of my lobe and said cleared margins. He also removed lymph nodes. Feeling lucky for the incidental find and choosing the surgical biopsy . Waiting on lymph node results. I have a Follow up may 9th. Thanks for the support.

I'm always envious when surgery is an option for someone. It offers such a measurable outcome. For myself, starting into year 4 of this nonsense, I will will act aggressively and decisively the moment there is a change in the status of my scans. YMMV-- we all have different approaches and priorities. Best of luck.

I had a small, slow-growing nodule in my lower right lobe that didn't show any uptake on the PET. Because of its location, it couldn't be biopsied without surgery. I had a lobectomy and the noduleturned out to be an adenocarcinoma. My decision to go with the surgery was influenced by my having had two prior non-lung cancers and this thing could have been a metastasis, although the docs all agreed that it was most likely a primary lung cancer due to its appearance on the CTs.

@Anthony, a friend of mine has an Exon 19 mutation, with lots of mets to the bones. He was diagnosed 16 years ago. 16 Don't quit before the miracle....

my LRLL. Aside from my well-documented challenge with a chylothorax, I've been feeling great. Normal activity results in no SOB and aside from the occasional twinge, there is no pain. I can walk stairs without SOB as well. Iin fact, I try to take the stairs (in lieu of the elevator) whenever I can. Yard work (including mowing) is no more difficult than before this experience. I've had one scan since, which was good. Next scan is in June, hopefully with the same results! I hope this helps anyone who is facing the same challenges we all are in this group.

https://www.si.com/nfl/2017/10/24/chris-mortensen-throat-cancer-recovery Mort passed not long ago.Worth the read. NFL draft tonight reminded me when they payed tribute. Cancer cares not if you are rich and famous or poor and lost. A vicious disease. Peace Tom

Good to hear. Early diagnosis is a real benefit to success. Lou

I've been away from the discussion and this may have resolved itself, but, frankly, I think your situation is completely unacceptable. I would strongly suggest you get yourself to a facility specializing in lung cancer. I see you're in Maryland-- you have to be near a reputable cancer center specializing in lung cancer. Yes, I'm emphasizing a place with a specialty in lung cancer. That's because our cancer field is exploding with new research and a generalist cannot stay on top of the new developments. All you need is a starting place. It's kind of like being a detective and may take a little effort on your part. I don't have any comments pro or con the following places, but they may be good first steps. Potential resources: two NCI-designated cancer centers in MD. You can find them here:https://www.cancer.gov/research/infrastructure/cancer-centers/find I also found a lung nodule clinic affiliated with U of MD, which may be worth checking out. https://www.umms.org/uch/health-services/cancer/cancer-services-and-treatment/lung Keep at this. Keep us posted!

Hello. I had a 1.2 cm round nodule in my RLL discovered in 2006. Had annual scans for 5 years and then forgot about it. Fast forward to 2020 (early) and that nodule had grown to the size of a lime. Upon reviewing my past surveillance scans I found that it had indeed been growing very slowly, but growing. No alarms were set off. Also the SUV uptake wasn't high but wasn't nothing at 1.8 My message is to not forget about it if you go the surveillance route. I ended up with 3 nodes involved and staged 3. Had a RLL VATs, chemo and radiation. Turned out to be Large cell NET (rare for LC) so the stats were scarce. They treated it as if it was small cell. I feel lucky to have had surgery because if it was known to be large cell protocol for surgery is sketchy. I would have it removed. I wish I had in 2006 (was given the option but doc suggesr a PET scan instead). Suffice it to say I was not a happy camper and made them very aware of that fact. Best of luck. Probably ok to go either way...if you keep cognizant it is there.

NYC Guy, You are in the small nodule, unreliable PET result zone. Now you have two choices: a CT scan 2 to 3 months from now to evaluate change in size and or shape, or surgery to obtain a biopsy. Depending on where the nodule is, anatomically, the surgeon may remove the entire lower lobe. I have no suggestion for how you might choose. Stay the course. Tom

Unfortunately a PET sucks at seeing early cancers. AIS and MIA lung cancers normally show way less than an SUV of 2 . I'd continue to follow the doctor's advise. Continued good luck to you. AIS and MIA Lung cancers have a 100% 5 year survival. AIS. Has a 100% 10 year survival if treated.

I personally would not delay with a rescan or a separate biopsy. Even though not 100% odds are high of it being malignant. Stage 1a lung cancer stops at 10 mm your at 9 now. While it's not known how fast it's growing, every day you wait is a day closer to 1b. While that's still very wet early it's not 1a. 1a systemic (chemotherapy, immunotherapy, targeted treatment) are not even offered. While because of your history they would most likely recommend it if you were 1b. This is the very reason they no longer wait for 10 mm to do a biopsy and now do it at 8 mm Good luck to you. ROSE may come back benign.

Bob, Sorry to hear about the recurrence but glad you found us. Nodules that grow are definitely worth getting a biopsy and I understand that they want more mass so they can do a better job of getting the sample they need to test properly. The waiting is terrible and I remember feeling great anxiety during my initial diagnosis and especially when I was told to "wait 3 months" before the next scan. Needless to say I was not a happy camper. I'm so glad that you gave up the smoking. Regardless of the COPD I'm sure that your breathing is most likely better now than when you were active in the habit. That will be a help through this. Please keep us updated and feel free to ask any questions you want. We have a pretty large base of survivors on this site with a great variety of diagnosis and treatments so there is a lot of experience to share. You won't need to go through this alone. Lou

i was diagnosed stage iv about 18 months ago - lungs, lymph nodes and spine i've had no radiation chemo is carboplatin and alimta imuno is keytruda after 6-8 months pet scans began to come back clear - carboplatin was discontinued what amazed me was the treatments had few side effects - never had nausea - did not lose hair - no pain if they opt for chemo, it might not be as bad as you think - and hopefully, effective

Anthony, Sorry to hear about your cancer, but glad you found us. There are many others here like eDiveBuddy, who were diagnosed with advanced LC (lung cancer) and years later they are still here to share their story. The truth is LC is not the automatic death sentence it once was. Yes it is still the deadliest form of cancer and highly recurrent, but more work (curative, and control-based). My LC was caught at Stage 1 and was treated surgically. But there are folks here with many and varied diagnosis and journeys. In the meantime I’d ike to share a blog with you that was written by one of our own members. It is based on his receiving a diagnosis of Stage 3 over 20 years ago. That Stage 3 then became Stage 4 and he went through many treatments and recurrences and only a couple of years ago he was pronounced cured. He compiled a list of “10 Steps to Surviving Lung Cancer; by a Survivor” and it can be found here. In addition, now is the time to learn as much as you can about your disease, diagnosis, and treatment. We have a section called “Lung Cancer 101” and that is found on this page. So please keep coming back. Ask questions, read other’s posts and learn all you can so you can manage this journey in a much better way. I pray you’ll be on the site for a long time to come. Lou

Sherry, Welcome here. My severe joint pain was due to Taxol and Carboplatin-infused chemotherapy. The side effect occurred like clockwork starting about 24 hours after infusion and lasting 2 days. Then things would return to normal. Like you, I could hardly walk at all and when I did, I suffered great pain. Nothing, even narcotic medication, relieved this side effect. I had a total of 18 infusions in three years of treatment and once my treatment stopped, so did the joint pain. Stay the course. Tom

Hope nodes are clear and surgery is curative for you!! Appreciate your update and will wait to hear on your final path..... Hang in there - this waiting is hard too...

So true Tom. But isn't that the case with all hardship? Nobody escapes them. Thanks for sharing. Lou

What a crappy situation! I am really surprised no one has suggested a PET scan now, rather than wait. You might suggest that to your pulm doc. Especially since you had existing nodules. Best wishes Tom

I understand your frustration with the not hearing and the waiting. Yours led to even more delays when you know biopsy is warranted now, let along next steps....About 7 weeks went by before I heard from my pulm after my December 2023 scan! I met with local onc in mid Feb who told me she believed I had a slow growing lung cancer. Heard from pulm by portal that evening (mid Feb-first time since Dec 2023 scan) - assuming onc contacted pulm? though could've been coincidence.... I already decided to wait for a 6 month scan so and pulm was ok with that.... Wishing you the best waiting for that appointment - surprised they wouldn't have just set that appointment AND also either referred you for biopsy or meeting with that expert (unless that is the May 29 appointment) or PET/CT if that's the route they end up going. LIkely what you all will talk about in May. Keep in mind calling for a cancelation prior to 5/29.... Hang in there.

These are tough decisions! It is important whatever you decide you are comfortable with it... wishing you the best as you decide.

Pet scan came back with:: right lower lobe/lung base nodule with no appreciable uptake may represent an adenocarcinoma spectrum nodule. Notably, metabolic activity of small pulmonary lesions in this region may not be well evaluated due to diaphragmatic motion artifacts. I asked what the Dr said and they said they still advise removal and biopsy. Does this sound right from this indication above off my PET?

just want to send support, NYC! I'm new here and in a similar position. Rescan in early July.....

NYC Guy, Welcome here. The metastatic concern level increases markedly when pulmonary nodules change size or shape. At this juncture, one's only choice is how to biopsy. Your doctors are suggesting a surgical biopsy but there is another alternative--a needle biopsy. This avoids surgery and a 9mm nodule provides a large enough target to obtain a valid tissue sample for the pathologist's histological (microscope) examination. The PET scan may help you choose because if the scan shows high standard uptake value (SUV) results, malignancy can be presumed. But sometimes small nodules don't give reliable results. Here is information about the PET scan and SUV. If the PET scan does not validate malignancy, I'd explore a needle biopsy before agreeing to surgery. Stay the course. Tom

Welcome, Bob! I'm new here too and awaiting my 3rd scan in July so we're in somewhat similar "waiting patterns." I can't imagine how you're feeling today with your scan Monday. I find I'm wound tighter the week or so before a scan and then until I have results then it's a deep exhale. Wishing you the best with the scan Monday! Hope you get results, a call from your provider and then direction timely - that waiting is a different kind of hard.

@NYC GUY I personally would get a vats fine needle biopsy with a rapid in site evaluation ROSE. That way a positive finding gets you a resection right then and there. An early resection is your best chance for a cure. Good luck to you and sorry you're even faced with this decision.

Dina, I'm so glad to hear that your surgery went well and that your recovery is going well. The spasms and pains are truly a pain in the butt. Some of that really has to do with muscles and nerves healing after the surgery. You may even have some ongoing nerve pain (itching and burning) at the sites of incisions. For those I recommend asking your doctor for Gabapentin. On the other side the more you can use the spirometer that more you do it the more benefits you'll see. Doing the exercises multiple times a day will help; clear your lungs for better breathing, strengthen your muscles to reduce spasms and increase blood flow for healing. Also move as much as you can comfortably do. I found that the more I moved (uncomfortable as it was) the better I felt. Try to keep your pain levels down as well. When you have less pain you're more apt to move and regain strength and flexibility. Please continue to keep us updated and I'm very happy you are doing well. Lou

Hey everyone, I had my surgery on the 12th and I’m doing ok! They went in via thoracoscopy and saw that my upper lobe was significantly smaller than it should be (likely just a structural anomaly). So they had to go ahead and perform a mini thoracotomy and take out the entire lobe. It was really tough at the beginning but I was still able to get up and move around in the hospital and I went home after 3 days. Each day gets better and I’m thankful to have my brother in town to help. Thank you also to everyone who posted with encouragement and resources, it was all very helpful. Does anyone have any suggestions on how to deal with sharp diaphragm spasms/pains? Is there anything to be done to lessen the pain and/or spasms or will they ease up with time? They were really bad in the beginning then subsided and have now started up again since increasing my amount of movement/time walking. -Dina

Sorry you find yourself with this diagnosis. Nearly 4 years ago I was diagnosed with stage IV NSCLC spread to my brain neck liver and skin. Because of the skin Mets I was not given long even if treatments worked. I may be a tad Slower and a little worse for wear but I'm here. Living life and enjoying myself as before. A few extra appointments throughout the year nothing that interferes that much. You can read some of my story here. I have not finished catching up. But it will give you a good idea. This is by far from a death sentence . The goal is to manage it until the next treatment or cure becomes available.

Not a doctor but before you worry needlessly, over 80% of solid pulmanary lesions are benign. But just in case You should ask for a PET/ CT scan as recommended by the NCCN guidelines for solid lesions >8mm. You need to register to see anything but it's free. https://www.nccn.org This is the RADS that will tell what's suspicious. https://www.acr.org/Clinical-Resources/Reporting-and-Data-Systems/Lung-Rads While a PET is not perfect it's way safer and less painful than a biopsy. If nothing glows you can probably skip the biopsied If the PET comes back not suspicious then LDCT in 3 months if no charge 6 months then yearly LDCTs until you're longer a candidate for definitive treatment Don't settle for less than the guidelines.

i love pet scans i had a ct scan - it had a note from the radiologist that recommended a pet scan - my gp did not order the test - when i kept getting worse, my gp reluctantly granted my request to see an ent - he ordered the pet scan i think the reluctance is the cost and if your insurance will cover it (without a cancer diagnosis) - my insurer did approve it and the images showed all the lymph nodes in my chest were involved a ct has its place and you can look at the images and understand them - a pet scan makes no sense unless you know how to set all the contrast settings in the pacs system - then you see the cancer in color - amazing technology (and the test itself is easier than mris) they test your glucose level, shoot you up with a mildly radioactive glucose solution, recline you with a warm blanket for about a half hour - then put you on the scanner with a wonderful pillow under your knees - 20 minutes later you are done my second favorite (and underrated test) is the cea blood test radiologists prefer that tests are performed on the same scanner interestingly (for a nerd like me), a pet scaner can do ct scans also

It may not be so uncommon that separate scans produce some differing images. It’s good to hear that the nodules are not growing or presently considered malignant. Having said that there may be other tests they can run. For example, a PET Scan could show up malignancy in cells within the nodules or not show anything (good news). But at the end of the day a biopsy is considered the gold standard for determining the malignancy or non-malignancy of a growth. Sixty percent of nodules are benign but as a former cancer patient (like me; colon 2010, lung 2019) I would always error on the side of more data and confirmed testing. Lou

I would ask for a biopsy. I also had breast cancer many years ago and then was diagnosed with lung last year. A biopsy will tell whether it is from the breast or a new cancer. That’s very important to treatment decisions and outcomes. Sound like you’re in a better location for good treatment. Good luck

Hello, I have had Lung nodules going on 8 years since I had bowel surgery and when coming out of surgery had to be kept on a ventilator for 2 weeks due to raspatory failure (30 years of smoking) . I have COPD consisting of emphysema, chronic bronchitis and asthma. I quit smoking when in the hospital in 2016 with the above mentioned surgery. I had 2 small nodules due to scar tissue that have been stable in size and shape. in a recent CT scan (12-2023) another nodule showed and was solid and spiculated. I since have had two other CT scans and it has tripled in size in 3 months to 7.7mm. I have a 4th CT scan on the 1st of April as they want it to be 8mm before they decide to biopsy or next course of action. At this point its like a roller coaster waiting then thinking you are getting somewhere just to go up another hill and I just want to level out and get on with what needs to be done.

Thank you to all the good thoughts. i had the CT on the 1st of April and waited a week for the doctor to call. Nothing, I already saw the results on my Advanced Radiology portal. it Grew to the 8mm as they wanted so i called the doctor's office and they set an appointment for May 29th. Two months after the CT scan and then they may eithe schedule a biopsy or a PET scan. 2 months not knowing what the next action is can drive someone insane. I am looking things up and everything says to get these things as early as possible. That is hard to do with waiting 2 months for a doctor's visit.

Hi everyone, hope all is well. I been diagnosed with stage 4 lung cancer (egfr 19) and it’s on my bones. I’m writing because I wanted to hear some positive stories or some hope. I’m getting radiation today on my bones. I have two doctors giving me two similar recommendations except one doc wants me to simultaneously start chemo (platinum) with tagrisso 80 mg. im 49 years old a little scared and can anyone help me with some comforting positive words.