newly diagnosed lung cancer
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Lung cancer treatments today are worlds apart from those available in your mom’s or grandfather’s time. In the last 20 years, more progress has been made in lung cancer treatment than in all of modern medicine before. That’s no exaggeration. If I had been diagnosed just 20 years ago, I likely wouldn’t have survived. Hospice would have been a more common path than effective treatment. Yet here I am, in full remission, four and a half years on.
While you’re still unsure if it is cancer, radon-induced lung cancer often presents with a high tumor mutational burden (TMB), which can make it more susceptible to immunotherapy. Treatments like immunotherapy weren’t an option in your mom’s or grandparents’ time but are now game-changers. When you've learned more I'll be here to help answer questions or share more about what I’ve learned.
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hey dive buddy. Had my biopsy yesterday. 3.5-3.7 cm tumor with hilar node involvement 1.4 cm and the others a little smaller. The doctor didn’t have the rose. Tech but he said it was cancer and asked me if I had a preference of oncologists. We don’t have too. Many of them up here in podunk maine so I’m doing a little research this weekend as I said befor grandfather, mother and I all diagnosed with lung cancer at 59. I definitely don’t want to tell my 35 year old daughter as she will think she is going to get it at 59, nor my dad who will be 88 in April and already lost my sister at 44 to breast/ lung cancer. Not sure if I’ll be a candidate for surgery as I have several underlying conditions, so we will see. I hope I can get chemo pills instead of having to go in but again I have to wait. My immune system is compromised so maybe that immunotherapy will work too. Radiation too why not Lol. There is a tv show can’t remember the name but after this guy goes through some terrible stuff he is yelling at GOD, is that all you got, well bring it on. That will be my attitude, Bring it on…… Thanks for the knowledge and support Batman
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While absolutely everything points to malignancy, without putting the tissue under a microscope, they can't definitively say it's cancer. I don't care if you're the chief thoracic surgeon at MD Anderson.
Being in the boondocks may mean getting results back for genetic profiling takes longer, but it shouldn't take more than 4 to 6 weeks tops.
While it's not possible to confirm radon exposure as the cause, many cancers suspected of being linked to radon display high tumor mutation burdens (TMB). This makes immunotherapy a potentially good treatment option. Additionally, mutations in EGFR and KRAS G12C are often seen in these cases, both of which have targeted treatments available.
Given your family history and the fact that you're a never-smoker, this likely points to a combination of environmental and genetic factors. Living in Maine—where radon exposure is a known risk—further supports the case for environmental contributions.
They don’t normally run tests that specifically point to radon exposure because it wouldn’t change the course of treatment. These tests are specialized and expensive. However, research facilities near you may offer access. On the other hand, mutations in TP53 or BRCA2 are routinely tested for, as these inherited mutations can increase susceptibility to cancer, even though they don’t directly cause it. Hopefully, these tests will be part of your genetic workup.
I recommend testing your home for radon and monitoring levels over time. It's equally, if not more, important to test your daughter's home. Radon detectors are relatively inexpensive for what they do, and if high levels are found, the houses can undergo radon mitigation. Here's a link to a guide on radon detectors:
Genetic testing for cancer susceptibility is also available. With your family history, it may be possible for your daughter to have insurance cover this cost. If your cancer is found to have mutations in TP53 or BRCA2, this would provide further evidence to support insurance coverage for her testing.
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hey dive buddy thanks for the advice on radon detectors, I already have one as well carbon monoxide. My daughter tried getting the genetic testing a few years ago but insurance would not cover it. Maybe they will now, who knows. I’m trying to get my mothers 20 year old hospital records in Mass, I still have some friends down there, but I don’t know if they will have them , but doesn’t hurt to look. I am really curious as to what type she had and any other applicable information. I have lived in Maine since 2001 but Mass before that. At some point I found out that the neighborhood where I grew up was built over a giant dump. Many younger people in my neighborhood ended up with all sorts of weird cancers, with a lot of them dying young. I would say a lot of genetics but my mom, dad, grandparents, sister and friends smoked back in the day, and prior to the late 80s or 90s nobody was worried about second hand smoke. I remember flying on planes when they still smoked, like flying in an ashtray. Also my childhood doctor always was smoking right in his office. Times have changed for the better in that regard. I also have a bunch of calcifications on my 2.4 cm thyroid nodule, I thought that was why I have been having trouble with swallowing. Always feels like it going down the wrong pipe. I’ll know all soon, and thanks for all the advice I truly appreciate it. Have a great Sunday. I’m going for a little walk before it turns below zero next week. Batman
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Hey dive buddy here are my results I’m thinking high 2b or 3a
Lung right lower lobe 3.3 cm tumor invasive adenocarcinoma
Lymph node station 11r inferior small groups of lymphoid cell present( I’ll just say odd looking) too much mambo jumbo
12 r positive malignant cells
11 r superior positive malignant cells
Moderate to marked pleomorphism
TTF-1 positive. CK7 positive. P40 negative. CKS/6. Negative. Napsn A. Positive
That’s all I have so far and I don’t know if he took enough to do my kras or other sub type markers or whatever you call them which will piss me off . When I woke up from anesthesia he asked me who I would like to use for an oncologist what a **** Lol any info would be helpful. I’m seeing my dr today who is actually only a PA but really nice, so he won’t know much. Any advice on what i should be doing from my end to move things along please and thank you . I was doing ok but kind of freaked out actually seeing it on paper ya know. Ok today got appointment at 1 pm I get winded pretty easy, some back pain, and spitting up a little blood that’s is disconcerting, but a symptom. Still don’t want to tell my dad 88 or daughter especially as now her dad, grandma, and great grandfather all got diagnosed with lung cancer at 59 what are the odds on that!!! Ok rambling now thank you DB , Batman out
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Okay only your doctor can really diagnose you. Based on what you've provided the lung cancer would be staged 2b, IIB T2A N1 M0
station 11 (interlobar nodes) and station 12 (lobar nodes), these are both N1 nodes (hilar or intrapulmonary nodes)
Tumor size (3.3 cm): This is T2a (tumor size >3 cm but ≤4 cm).
You provided no metastatic information.
The combination of TTF-1 and Napsin A positivity (Adenocarcinoma), alongside the absence of p40, CK5/6 (Squamous), strongly points to Adenocarcinoma of the lung
You should ensure the samples are sent for genetic profiling. Make sure a PET scan is completed and a brain MRI or CT is performed. Some might be hesitant but the most common cause of brain tumors is metastatic lung cancer. The moderate to marked variability in cell size, shape, (pleomorphism) can point to a.more aggressive cancer behavior. See if there's a well or poorly Differentiated in the report.
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So you could see where they are .
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morning dive buddy it also says right lower lobe invasive lung adenocarcinoma 11r inferior and 12 r consistent with metastatic lung adenocarcinoma. Slide shows epithelial cells with highly irregular nuclear contours, high nuclear cytoplasmic ratios, hyperchromasia and small nucleoli cell block shows lung tissue with fibroelastic scarring and infiltrating malignant epithelial cells arranged in irregular groups showing moderate to marked pleomorphism, irregular contours and high nuclear cytoplasmic ratios occasional multinucleated cells seen. The morphologic features combined with the immunostain results are consistent with invasive lung adenocarcinoma. That’s quite a mouthful for me! So mine is a little more aggressive I take it? Well at the very least I love learning about new subjects lol. I asked my doctor yesterday about the marker testing and he had no idea but I told him to ask the lung guy if he had enough material to do it. I’m not getting another biopsy though they can do the liquid biopsy. Looking forward to having a port put in so they will stop jabbing me with needles. You have a great day Batman out.
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The metastatic there means it's not a primary cancer. From the pathologists point of view cancer that has spread beyond it's original location no matter how close or far involved spread. For lung cancer metastatic means a distant organ, lymph node above the collar bone, or opposite lung .
The other mumbo jumbo is the description of the cells themselves. Beyond just identifying them as malignant they are used to grade the cancer itself. Yours may point to poorly differentiated cells but it's possible for these features to be seen in moderately differentiated cells as well. And it's a subjective term so clarification is needed.
Rumors are graded G1 to G4
G1, well differentiated: all cells look normal(low grade)
G2, moderately differentiated: most cells look normal(low/moderate grade)
G3, poorly differentiated: most cells look abnormal(high grade)
G4, undifferentiated/anaplastic: all cells look abnormal(high/highest grade)
The fastest growing cancer cells tend to look the most abnormal.
The Mumbo jumbo as Best as I can describe them
1Moderate to marked pleomorphism: This suggests that the cancer cells vary significantly in size and shape. Higher pleomorphism typically indicates poor differentiation.
High nuclear-cytoplasmic ratio ( high N:C ratio) The nucleus takes up more space in each cell.
rregular nuclear contours: the cell nucleus no longer looks smooth and oval or round.
Poorly differentiated cells often display these features because they lose the structural and functional characteristics of normal cells.
Multinucleated cells: cells containing more than one nucleolus.This is often a sign of a more aggressive tumor, commonly associated with poor differentiation.
Fibroelastic scarring: While this doesn't directly relate to differentiation, the surrounding tissue changes can sometimes reflect a more chronic or aggressive tumor process.
If differentiation is not explicitly stated in the report, you could ask your doctor or pathologist for clarification. Well-differentiated tumors tend to grow and spread more slowly, while poorly differentiated tumors are often more aggressive. This can play a role in prognosis and treatment decisions.
Do you have a date for Port placement?
Everyday I wake up is a Great day! Hopefully yours is too.
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morning dive buddy thanks again for all the great information . They said they didn’t have enough material to do all the biomarker testing,so I’ll probably have to have a liquid biopsy additionally . I meet my oncologist and others on Feb 12 so I’ll go next week for the liquid biopsy. Should I ask my regular dr about port placement or wait til I speak with my oncologist? I’d just assume get it done sooner. I have grave’s disease and hyperthyroidism and a 2.4 cm thyroid nodule that I thought was causing my hoarse voice,sore throat, trouble swallowing etc. last couple of months it feels like food and drink’s going down the wrong tube. It could be either. Got an ultrasound soon for thyroid as well as an mri on my head for my brain. My moms went to her brain not sure about my grandfathers though? Not worried about chemo or radiation,but surgery I don’t want as I only have 10 %range with left arm and right lung surgery will leave with no arms for weeks. I live on the 3rd floor and have to crouch down to get up the last flight of stairs real pain in the but! I don’t want to go to a nursing home but don’t think there are any alternatives? But I digress. Sorry. Thank you so much for the replies. Really helpful. Ok I’m going for a walk as it’s warm in the 20s today lol Batman out!!!
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Your PCP can coordinate with the oncologists office. Probably best to reach out to the oncologists office to ask for guidance. The oncology nurses or staff may be able to expedite port placement. Treatment can be given through an IV or PICC line as well . The day I was Irish scheduled for the Port placement I ended up being checked into the ICU and received my first chemo through a PICC line. My port was placed a couple weeks later.
I live in a house on stilts. It was hard enough going up one flight on chemo . I don't really know if I could have done 3. I also had a good neighbor die after falling down a single flight of stairs at 54.
Can you keep to the first floor? I don't know if Extended sSay America has a hotel near you but they offer discounts for cancer patients through the ACS.
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hey db , extended stay America offers up to a 45% discount which is great, but we only have one in Maine lol, and I’m not sure where I will be having my surgery done, plus no car which makes it not an option. My problem is I will have no working arms for several weeks, like I can’t even wipe my bum, or comb my hair with the disabled arm? All stuff I’ll have to bring up with my team I guess? I had 3 great friends who could have helped, but one just died and the other two moved out of state, which leaves me with absolutely nobody to help out at home. I cant be the only person that has been in this situation so someone will have an answer for me, but on top of cancer anxiety, this surgery issue is stuck in my craw. I’d just assume stay in the hospital until I can take care of myself, but it doesn’t work that way. Actually worrying about after the surgery is worse than worrying about the cancer itself lol. Once again thanks for listening, sorry for rambling happy to be alive to worry though ! Batman
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Speak to the hospital's case manager or social worker as soon as possible. They can help arrange necessary services, such as inpatient rehabilitation, home health care, or outpatient therapy. These professionals are there to ensure you have the support you need after surgery and can guide you through Medicare coverage and eligibility requirements.
It might also be worth considering having the surgery at a facility where post-operative services are more accessible if your current hospital cannot provide adequate follow-up care. This could make a significant difference in your recovery process.
One of the best places to start is by speaking with a nurse on your care team. Nurses often have firsthand knowledge of available resources and can connect you with the right people. It’s essential to let them know you live alone and have limited support so they can advocate for appropriate care on your behalf.
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@justawmn wondering how radiation was going
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hey db I think you messaged the wrong person, no radiation here yet. Had brain mri no Mets so that’s good. Meeting with the thoracic surgeon next Friday and oncologist the week after. Had to walk 3 miles in a snow for the mri as I only had about 18 hour notice wasn’t supposed to have it till Feb 25th, but i said heck ya I’ll take it. Got my thyroid ultrasound on the 10th. Wondering if my 2.4cm nodule is in the mix? It’s grown quite a bit recently so who knows. Sometimes thyroids don’t show cancer on a petscan tricky little thing that thyroid lol. Cant wait to talk to my team as I have tons of anxiety about after care from surgery. I have almost no use of my left arm and will need 24/7 care for quite a while? As it right lobe surgery. I’m so overwhelmed from scheduling appointments. I’m more worried about aftercare than the cancer itself lol. How long will it be until I can carry 30 lbs of laundry to the laundromat a mile away. Or carry 30 lbs of groceries from the store 1.5 miles away. Do you have an approximate answer for the last two questions. The medical people just can’t seem to grasp I have zero help. I am 100%. Self reliant. I had 3 great friends who would have helped but one died ( liver cancer) and the other 2 moved to Florida in the past year. Sorry for rambling on, I have been messaging with u and one other person in here, and that’s it. Still haven’t told my daughter or dad as they both live out of state and can’t physically help, so why have them worry until I know everything. Sorry again have a great day , and thanks again ,Batman
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She's the original poster.
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I had my brain MRI the day before our snow storm. 8.5 inches which shattered our record and was more than the total snowfall in recorded history. Took 3 days for things to open up again. My follow up is now 4 weeks after the scan. I read my own Scans and it looks like the last one so I'm good. 3 miles is an impressive walk. If you're doing that I don't suspect you'll have Ny problems with surgery as long as it stays minimally invasive. But planning for the worst case is essential.
Sorry I can't be of more help. Are you on any other lung cancer boards? I'm also on lungevity's
It's only slightly busier than here but two of the moderators have had lobectomys and they could give you specifics.
There's also inspire. It a for profit site but is the most active. I was on there 4 years but left because they were using an AI but to respond. The bit tried to fake being human and was just wrong with it's responses a lot. But the people there are incredibe
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Let's try this again. I had my MRI the day before our record snowfall. 8.5 inches. Follow was rescheduled for 4 weeks after because everything was closed, including the interstate for days. I compare my MRIs with the last one and saw no change so I'm okay with it. If you're walking 3 miles I don't see any reason for you to worry too much about the surgery. Sorry I can't be of much help on that front. http://forums.lungevity.org/ is a little busier than here but two of the moderators have had lobectomyies and they could provide you with first hand advice. Inspire.com is a commercial site I was on for years. I left because they were using an AI bot that was pretending to be human. It was wrong a lot. People there are fabulous and it's definitely the most active.
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hi dive buddy. radiation is over. i had to wait 6 wks before next ct scan do to possible inflammation. i go monday for my first DNC bloodwork and wednesday is my ct to see if radiation worked. ive stopped posting on here because my issues seem minor compared to everyone else and i don’t want to tie up someone who can help others in worse shape than I. i’m really worried and don’t have a good feeling about next week but trying to keep positive. he did mention that if radiation didn’t work we would discuss immunotherapy , whatever that is. My oncologist is not a fan of chemo. thank you for checking in with me. i do try to keep up on what is going in here from time to time but stay in the background to give others a chance. i hope you are doing well. my opinion is that you are either extremely informed or are a medical professional, either way you are a Godsend to others. take care
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