6mm nodule in pleura

All I can say is get another opinion. Do not rely on one doctor. I had breast cancer in left breast. ILC. Mammo religiously every year and ultrasound. I had had both mammo and ultra sound in Dec. 2022 and they said neg. For cancer. May 2023 I felt lump in left breast. Went immediately for mammo and ultrasound. Mammo did not show breast cancer. Ultra sound missed it. I had to repeat ultrasound with my finger pointing to lump. Then they saw it. I had to have mri to see cancer and lumpectomy. The gest of this is you have to be your own advocate. Get another opinion. And another. I am on top of my own cancer. Good luck.

Hello @janar, welcome to Mayo Connect. Congratulations on your engagement! Try to focus on the day, and how special it is that you've found someone so dear. What a stressful time you are facing.
Pulmonologists have gotten very good at standard lung biopsies, through the use of robotic bronchoscopy. Being that your nodule is in the pleura (lining of the lung), they may be able to do a needle biopsy, but that comes with additional risks. A pulmonologist would be best to speak to reasons why they believe that's a good or bad idea. I'm not a clinical person, just a lung patient.
Either way, you need your questions answered. You've obviously been through a lot in the past two years, you know that some doctors are more open than others. You need to find one that can have a discussion with you and can explain the reasons for waiting, vs biopsy, vs removal. What type of doctor have you been speaking with? Have you been able to speak with a pulmonologist?

Hello @janar , I second Lisa's suggestion of another opinion. Many of us have experienced missed diagnoses due to various reasons, some legitimate, some not so much. Medicine is a gray area, not black and white. I have metastatic squamous cell carcinoma and my original site in my ear, but my first met was in lung tissue. At the Mayo pulmonologist's recommendation, 95% certain that it was a fungal infection, we watched it grow for 3 months, when my Mayo team pulled a pulmonary Oncologist in to view the repeat CT and he was every bit as certain that it was a metastasis. I had a partial lobectomy the following day via VATS procedure and it was a met.
You need to get that other opinion, preferable from a cancer specialist. I have had several 2-5mm spots on CT scans that come and go and no one has discussed getting to a certain size to consider surgery. Yes, they must be a reasonable size to do a needle biopsy accurately. I hope you can manage this stress and still enjoy your wedding and all the excitement that will bring.

Hi @janar
Sorry for all you’re going through and at such a young age. Everyone in my birth family has had significant conditions misdiagnosed. My brother had to go to 4 different doctors over a year for a correct diagnosis and the 4th doctor saw something on the very first xray he had a year earlier that 3 doctors missed. It was mets from lung cancer, not a back injury they were treating with PT. He never had lung symptoms, never smoked and was 45.

I agree with others not only on getting a second opinion with a cancer specialist but since you have something rare you need to go somewhere like Mayo or the nearest teaching hospital because they see all the unusual stuff, have multidisciplinary teams and will take the necessary time to review your case. Take action and be your own advocate. No one has more time to spend on your case than you do. Reputable doctors will not be offended by or discourage second opinions.

Most importantly, do not give up hope. They are coming up with new treatments all the time. Sometimes surgery alone resolves cancer. I know several people that had cancer long ago, even decades, and have never had another issue. Maybe this is even something benign. Your nodule is fairly slow growing which is good. I have 50+ carcinoid tumors 1 cm+ scattered across both lungs first seen 16 years ago. They destroyed one 2.6 cm tumor with microwave ablation. Obviously we can’t remove 50. In 2008, they thought it was either mets or residual from some unknown viral infection I never had. It was neither. It’s neuroendocrine cancer and another rare lung condition with only 300 documented cases. Monthly injections have significantly improved my respiratory symptoms so it’s better than it was for 30 years prior. The med also slows tumor growth on my already slow growing tumors. I’ve also had recurrent breast cancer for 4 years and still take meds for that. I first had it 11 years ago. Side effects from treatment can be challenging, but I’m still here enjoying life.

I’m telling you all this to give you realistic hope. Maybe none of us has your rare condition but tons of us have other rare cancers and conditions and that’s just our new normal as we continue to live our lives making room for medical stuff. You are not alone. We’ve all been scared by the unknown at times.

Exciting that you are getting married! Please keep us posted. Blessings to you. Zebra

Thanks to all for your support.

I'm actually from Finland and currently in care in comprehensive cancer center in Helsinki, Meilahti hospital. It is a university hospital.

I have been talking with the head of department who has consulted 2 pulmonologists, thoraic surgeon, radiologist, pathologist and another oncologist in a meeting. When I was told it needs to grow to certain size "because its so small and they might not see it during surgery" it made sense to me for a moment. But after giving it a thought, it started sounding like such a stupid excuse. Cancer that is "too small to be removed but can be seen in CT"?? LUDICROUS.

I'm definitely getting 2nd opinion and have already gotten an appointment at a private hospital to a doctor who specializes in rare cancers. Thanks for the encouragement.

My cancer is one with about 80 documented cases world wide since 1940's. The prognostic numbers are abysmal but that hopefully is mostly influenced by: 1. Lack of technology and scientific knowledge in 1940-1990 and 2. Most patients are of old age and have had multiple metastases at presentation.

At least if it comes to that, I can say on my deathbed that "my ball(s) are literally killing me". I just wish it wouldnt happen in another 20-50 years.

Most annoying part is that only I seem to be worried about this. My parents are saying that its nothing and I'll survive (maybe out of fear and to reassure), my brother and his wife, who is a doctor, is saying that its very common to have nodules and that its so small. Even my fiancée is saying that I'm young and strong and that its so small that it can't hurt me. Everyone is telling me to wait and do what the doctors tell me to.

I feel like my doctors and people around me aren't taking this seriously.

I've also been looking at German hospitals, if I could get into Hamburg for example. I tried looking what kind of costs Mayo clinic has, but couldnt find anything useful for my case. It would be "lung surgery" or "pleural surgery". I obviously dont have US medical insurance, but I am well enough off that I can personally "afford" several hundred thousand to save my life.

I'm glad for all the support. I hope I make out of it alive, but the pain in my chest keeps reminding me of its existence constantly.

You shouldn't have to deal with this at your age. We old folks have lived but you are just starting. Continue to advocate despite lack of support. Families who have not dealt with cancer much don't know how to support the patient except provide encouragement in the form of positivity. Optimism is a great asset to your health, but so is education on your rare condition. I have done an immune augmentation therapy in the Bahamas for 11 years post surgery/chemo/radiation. I suggest exploring Beta Glucan as a proven immune support. I have taken it all these years at the suggestion of the clinic doctors as I continue their treatment. I buy it on Amazon now. A book I have gained information from for complementary treatment is A Rebel's Apothecary by Jenny Sansouci. Adding in these complementary therapies can possibly benefit even when not supported by medically accepted research standards. Memorial Sloan Kettering Cancer Center mskcc.org has a very complete listing for potential side effects and drug interactions for herbal type products.
As I have progressed through this cancer journey where any new pain or symptom immediately triggers worries of a new metastasis, one of my Mayo surgeons said that a cancer pain is not going away, it will only get worse. We need to listen to our bodies. I sincerely hope that your chest pain is caused by stress and not cancer, and that you can gain that information sooner rather than later. It sounds like you are on the right track.

Hi @janar, I'm glad you are keeping your sense of humor. This is a difficult time. My stepson went through testicular cancer a few years ago (age 29), just before his wedding, so my heart goes out to you and your fiancée. There were plenty of jokes that kept us snickering. I never thought I'd be talking about his private parts, ever. 🙂
I have stage four lung cancer, and the overall statistics are getting better, but they aren't good. I've already doubled the original estimate that the doctors gave me. The statistics for your rare cancer are hard to come by. We can't compare cases from even a few years ago with today, because treatments have advanced, and in your case, there are so few cases overall. You aren't a statistic. Non-cancerous lung nodules are common and most people don't even know they have them, but anyone that has dealt with cancer is on high alert when there is a new finding. That's understandable, and a valid emotion.
Family dynamics are difficult to work through. You may try telling them, that you just need them to listen and be supportive to your concerns. They are scared too, but they don't want to show that to you. They have been told that being positive and faithful can help beat cancer. It can help when the patient believes that too, but science plays the biggest part in beating cancer.

I talked to one of my doctors and it was like talking to a brick wall. Same excuse as before too small for removal with a hint of "we need to wait to see if it has metastasised elsewhere". I'm now concerned that instead of treating me, my doctors just want to wait for me to die. Instead of making me depressed that made me furious.

I figured out how to request an appointment at Mayo. My next hurdle is translating my medical records to english and requesting my imaging materials which could take anywhere from 5 to 30 days.

I'm going to do the translations myself. I'm proficient in english and I have masters degree in science so I know and understand a lot of medical vocabulary too, and those that I dont know, I know how to figure out.

I need to do this anyway to send out my records to Germany and Austria as well. I'm inclined to accept the first opportunity at surgery.

@janar , I have no medical training, but it does indeed sound like you are talking to a brick wall. Waiting to see if it has metastasized elsewhere is the worst example of medical practice I can imagine. Once it has metastasized somewhere else they CAN see, it has probably also metastasized to several other places they CAN'T see.

Experience getting my dad into the Mayo Clinic in Florida was challenging because they are so specialized. My dad's initial biopsy was positive for a malignant cancer of some type, but initially inconclusive as to lung cancer or pleural mesothelioma. Once it was confirmed by hometown doctors to be mesothelioma, Mayo agreed to see him (since they could then assign the right specialist) but it was not a quick process. 🙁

Last month, I had a CT-guided biopsy of a 9-10 mm tumor (pancreas metastasis) on the anterior wall of my peritoneum (abdominal). It was done under general anesthesia because I was also having a port placed, and my (US-based) private insurance covered it. Being close to the surface pf my skin, it was a pretty easy target to hit with a core needle. Their big concern, since this was part of a research study, was that they simply wouldn't be able to collect enough tissue to satisfy all the researchers (which turned out to be true).

A different surgeon had also told me that particular tumor was a pretty easy target for a core needle biopsy and which could be performed under local anesthesia (much cheaper). He added that if I wanted to remove the entire tumor laparascopically, it would cost over $30000 US, with the majority of that being the cost of general anesthesia. I just cite this as a possible upper bound since you said you had resources to cover some of the costs yourself.

As mentioned, I have zero medical training, but the location you described "attached to the pleura periphery, anteriorally next to right side top lobe" sounds to me like something a good surgeon (or interventional radiology surgeon) could reach with a core needle biopsy under local anesthesia. Hopefully you can get a good second/third opinion somewhere with a very affordable biopsy from a qualified provider in Europe. My dad's biopsy was done under general anesthesia because they found several nodules to biopsy and were also placing a Pleurex drain/catheter at the same time.

Once they biopsy your tissue, if the pathology report identifies any malignant cells at all, I would take a number of steps:

1) Send the pathology slides to another lab for second opinion / confirmation of cancer type. This may also help you get past the specialist gatekeepers at places like Mayo.

2) Send a tissue sample out for NGS (Next-generation sequencing) at a lab like Tempus, to identify any mutations that may provide actionable targets

3) Send some tissue to Natera Corp. for creation of the "Signatera" test to monitor for microscopic residual disease as you undergo treatment

4) Find another doctor to provide your treatment, because if you have a malignant cancer and the doctor is/was willing to wait for metastases, this is not a doctor you want to trust with your young life!!!

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Steps you can take in the interim, especially if you have resources:

1) Increase the frequency of your CEA testing, and continue plotting the trend,.

2) Get a germline DNA test (blood or saliva) like Invitae to see if you have inherited any genetic mutations that increase your risk of cancer. A positive result may move you to a "faster" line that allows more frequent/comprehensive tests as a high-risk patient, and also help guide future treatment.

3) Consider a somatic DNA mutation test like Guardant 360. This can identify cancer DNA in your blood and also help direct future treatment. (It reports mutations, tumor mutational burden, microsatellite instability, etc).

4) Consider a multi-cancer panel test like the Galleri test from Grail. It might identify malignant cancer DNA and possibly pinpoint location/organ of origin.

None of these are guaranteed to identify or prove anything, but they do offer additional views that your doctors have apparently not taken advantage of yet, and might lead to action being taken sooner rather than later if necessary.

I hope something works out. Wishing you and your family (present and future) all the best!

Im on a rollercoaster right now. Morning started well, continued translating my records and drove around hospitals to request my imaging records while working remotely. Today was day full of meetings so I could just use my headset for work.

I was pleasantly surprised that they can let me have the records by tomorrow. Meaning I can start sending out my info to every hospital I can find.

Went to my house and got sad about probably dying to this disease. I couldnt work so I went for a run which made me feel really great. It also takes the pain away from my chest. I ran a new record too. Running gave me some fighting spirit combined with the news that the imaging records wont actually takr 30 days so theres a chance I might get treatment from somewhere. I really dont like having that thing sitting literally under my chin, in my chest.

Now Im getting bit sad again. I have about 60-70 pages of records and Im being very meticulous, which makes it incredibly slow. I even paid attention to the format of the entries so that they look similar.

But Im only at page 9. I also tried calling the dumbass thorax surgeon who made the "policy about 10mm size" to my doctors. Of course his answering machine says he is on vacation until mid next month. They did that meeting probably even without knowing about my CEA.

I also got a bit mad at my doctor yesterday who played wise ass with me. The only two reassuring things he said to me was that whatever is in my lung, its only slowly growing (~2mm a year) and that it might be probably something completely different (different cancer even).

I translated the radiologists statement who said that the histology of the pathological sample was obscure, uncertain or non specific.

The feeling in my chest is back. Its this pressing feeling right under my collarbone. But i only feel it when I keep my arm in certain position. I think I get the same feeling after a while with my other arm. Maybe its just bad posture.

Now that I relax myself I can feel nothing. I dont know, maybe Im hypochondriac. Doctor said that this small nodule shouldnt be causing me anything, just said that if im feeling like i tell him, it means the cancer has spread everywhere in the chest (nice tactful doctor, huh? Next time i see him im gonna throw the chair at him..).

I feel betrayed by the healthcare system. I went to show my testicle to doctors already in 2018 but they said its just a cyst. I went there again in 2020 and it was still a cyst. I went third time in 2022 and then it suddenly was cancer. I feel like I cant trust my doctors.

I dont know anymore. Im supposed to get married literally in 2 weeks while knowing im very likely going to die to this thing.