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6mm nodule in pleura

Posted by janar @janar, Jun 22 6:09am

Hi,

I am 38 year old male. In 2022 I had orchiectomy that removed my right testicle. All blood and cancer markers were normal before and after the operation. In the pathologists PAD, they say that the morphology of the neoplasm fits adenocarcinoma. I had extensive tests with PET/CT, CT, colonoscopy, gastroscopy and laryngoscopy and they found nothing. I was then given diagnosis "possible adenocarcinoma of rete testis". Official ICD-10 code is C63.7.

Since then I have been on followup every 3 months where they repeat the CT scan and do blood tests. Up until last November 2023 everything was fine. Doctors said there is nothing wrong up until May 2024. In May they said that there is a small nodule in my pleura which has been growing since 2022. It was 2mm in size in 9/2022, 4mm in 11/2023 and now it was 6mm in 5/2024. They said that they want to wait for it to grow to 10mm in size before they remove it.

However I started looking back at my test results. All tests were normal but my attention was drawn to my CEA results. Before 11/2023 it was < 1 microgram/liter. On 11/2023 it was 1.2ug/l and on 2/2024 it was 4.2ug/l. For some insane reason my doctors chose not to measure it in 5/2024 so I went and had it measured personally at different lab and it was 8.7ug/l in 6/2024 !!!

Im now incredibly worried and scared that Im going to die, possibly within next 12 months. Im supposed to be getting married in 3 weeks and the doctors drop this 6mm pleural nodule bombshell on me out of nowhere. And they are saying that they need to wait until it grows to 10mm before they resect it. The nodule is attached to the pleura periphery, anteriorally next to right side top lobe.

In 11/2023 I had gardnerella vaginalis infection which was treated with antibiotics. I had swollen painful lymphnode in right side of my groin. They did biopsy and it was declared non cancerous. The swelling also went down pretty quick, but it was shown in CT in 11/2023 checkup.

I also had my wisdom teeth pulled in 4/2024 and I had a really long, 3-4 week cough which subsided just before the next CT scan in 5/2024.

Im certain that nobody in this forum has had "adenocarcinoma of the rete testis" because it affects approximately one person every year. But Im hoping to get some thoughts and insights about the 6mm nodule in my pleura.

Do you think that it needs to really grow to 10mm before it can be resected? I was told that they cant see it before its larger than 10mm, which in hindisght sounds like shitty excuse. Even I can see 1mm objects with bare eyes.

What about the pleural nodule itself and CEA? Should I be concerned? Doctor said its uniform and smooth with sharp margins and no spiculation.

I also have started to get chest pain to my right side. Sharp and burning kind of pain which doesnt go away with pain medication. Only exercise helps with the pain.

Thanks!

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janar | @janar | 5 days ago

Well I managed to translate everything and send CT scans and everything else to Mayo.

After about hours I get a reply "our team of specialists do not feel that Mayo Clinic has anything significant to add to the current treatment plan". I asked if I should understand this as a "second opinion" and they just repeat the same thing. So as last question I ask if they looked at my CT's and they said that they reviewed all pictures I sent. Finally they told me to contact again if my medical condition deteriorates.

I guess its a second opinion but didnt give me a real answer about the nodule.

But later I received a call from my brother who had visited doctor in Vienna about my case and he said that there is no reason to leave it there: It doesnt belong in the body and it is causing great deal of stress to the patient. Futhermore he said that it is really easy to remove. Finally he recommended a surgeon who could do it.

The doctor also told my brother that whatever I have in the lung has been there over 2 years since it was seen in first image, and that if it was aggressive, it probably wouldve grown faster. He also has treated about 15 adenocarcinoma rete testis cases during his career. Its still not common but clearly not as uncommon as the scientific literature makes it look like. So that also was a bit more reassuring.

So now I'm waiting for appointment to surgeon. I feel like I can breathe again. Also the pain in my chest is gone, mustve been the stress.

REPLY
1 reply
Zebra | @californiazebra | 5 days ago
In reply to @janar "Well I managed to translate everything and send CT scans and everything else to Mayo. After..." + (show)
@janar

Well I managed to translate everything and send CT scans and everything else to Mayo.

After about hours I get a reply "our team of specialists do not feel that Mayo Clinic has anything significant to add to the current treatment plan". I asked if I should understand this as a "second opinion" and they just repeat the same thing. So as last question I ask if they looked at my CT's and they said that they reviewed all pictures I sent. Finally they told me to contact again if my medical condition deteriorates.

I guess its a second opinion but didnt give me a real answer about the nodule.

But later I received a call from my brother who had visited doctor in Vienna about my case and he said that there is no reason to leave it there: It doesnt belong in the body and it is causing great deal of stress to the patient. Futhermore he said that it is really easy to remove. Finally he recommended a surgeon who could do it.

The doctor also told my brother that whatever I have in the lung has been there over 2 years since it was seen in first image, and that if it was aggressive, it probably wouldve grown faster. He also has treated about 15 adenocarcinoma rete testis cases during his career. Its still not common but clearly not as uncommon as the scientific literature makes it look like. So that also was a bit more reassuring.

So now I'm waiting for appointment to surgeon. I feel like I can breathe again. Also the pain in my chest is gone, mustve been the stress.

Jump to this post

Sorry to hear that Mayo didn’t offer much help, but the rest of your message all sounds very encouraging!

REPLY
1 reply
janar | @janar | 5 days ago
In reply to @californiazebra "Sorry to hear that Mayo didn’t offer much help, but the rest of your message all..." + (show)
@californiazebra

Sorry to hear that Mayo didn’t offer much help, but the rest of your message all sounds very encouraging!

Jump to this post

Well it was helpful in the sense that they didnt see it as serious enough. Which is not nothing. Second opinion was what I was after first anyway, but ultimately removal of the nodule because it does cause great deal of stress.

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1 reply
Mentor
Sue, Volunteer Mentor | @sepdvm | 5 days ago
In reply to @janar "Well it was helpful in the sense that they didnt see it as serious enough. Which..." + (show)
@janar

Well it was helpful in the sense that they didnt see it as serious enough. Which is not nothing. Second opinion was what I was after first anyway, but ultimately removal of the nodule because it does cause great deal of stress.

Jump to this post

I agree that it is a valuable second opinion knowing Mayo does not feel the need to jump in and recommend something different. Now you can breathe a little and pursue a potential surgery to remove this and find out what it is. The slow growth should also ease some of your worry. You are a great advocate for your own health care. Keep up the good work.

REPLY
ihndz | @ihndz | 5 days ago
In reply to @californiazebra "Hi @janar Sorry for all you’re going through and at such a young age. Everyone in..." + (show)
@californiazebra

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

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Great comment, gives hope to so many. Stay healthy, God blesx

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