Oncologist didn’t even tell me about lung nodule

TurboKitten88

I’m three years out from treatment for stage 2 TNBC. Last year I had a ct scan due to some odd symptoms which I was told came back all clear. After looking though my reports I see mention of a 6mmx5mm lung nodule. I was kind of disappointed no one even mentioned it. And also a little upset that we were not rechecking it. It’s been 11 months since my scan and I am insisting on a rescan to make sure there is no growth. Even though they are telling me “there is no reason, so insurance won’t pay”. I kind of feel let down. But I’m gonna get the scan out of pocket of course. Am I silly for wanting that peace of mind? Everyone else I talk to said they get every three month scans when a lung nodule is found and they had previously had bc. Just looking for thoughts. And of course hoping for all clear results.

ctmbsikia

No you are not silly. I am not sure of the criteria of checking nodules. I thought 6mm or larger required follow up, or maybe it's 9mm? They also go by your risk %. You would think having a prior bc diagnosis raises the risk to qualify for annual screening. Anyway, just my thoughts, good luck. I'll be going in for one of these soon.

ARmom4

TurboKitten88:

That's terrible. Sorry you're going through this. Yes, definitely figure out a way to get a new scan. "There is no reason" is not acceptable. This is something that could be very important. I would probably even switch oncologists if there's no reasonable explanation for not telling you. Also, always ask for copies of your scans or at least the report. That way, you can read it for yourself. The law says you have a right to all of your medical information. Good luck going forward!

TurboKitten88

Thank you guys. I even checked in with some of the ladies in my group and they were shocked as all of them have been having follow ups just to make sure. Also two of them did turn out to be lung mets.....so thats weighing on my mind of course. I have a almost 2 year old.....i want to know for sure even if its just 5% chance. Told my husband i am considering switching over this cause im so upset. They are supposed to call me today or tomorrow to set it up.

AliceBastable

I have lung nodules (can't remember the size right now) and because I get abdominal scans for something else twice a year (once a year from here on), my MO piggybacks a chest CT onto those scans. But she's also told me that most people have some activity in their lungs and we just don't know about it until we get scanned for something else. I think she only tracks mine because I'm kind of a crap magnet when it comes to cancers.

moth

They absolutely should have mentioned it. I guess this is an example of where getting copies of your own radiology reports etc is worthwhile (they should be in portals now for mos US pts.)

Otoh, most early stage breast cancer pts here in Canada are not scanned at all and the offical US ASCO guidelines are to not do scans unless other symptoms call for a scan. Routine scans are not evidence based for most pts.

But I agree that now you know something is there it makes sense to check it at least once more and see what it is. I did just yesterday read this in a study on oligometastasis "Finally, an additional challenge regarding pulmonary nodules detected by CT is the relative high prevalence (about 25%) of benign (micro)nodules in the general adult population,32 and the relative poor performance of radiologists or clinicians in detecting and characterizing such nodules.32,33" https://ascopubs.org/doi/full/10.1200/JCO.21.00445

I hope your scan confirms that it's a big fat nothing to worry about!

muska

Radiologist report should have an “impression” section and recommendations. What’s on your report? Did the radiologist recommend a follow-up or not?

Size is just one of the factors they take into account, there’s more to it than just size. If the radiologist didn’t recommend a follow-up your MO wouldn’t mention it to you.

If you are concerned you could get a second radiologist opinion on the original scan.

I have multiple small nodules in both lungs and have taken scans for second opinion at the beginning of treatment.

Best.

ctmbsikia

You may or may not find this interesting. A recent study Feb. 2021 showed not all radiologists are following the same guidelines for follow up. Also, the guidelines have been recently updated. If you scroll down the page a bit you will see those. I would also look up that last CT scan to see the impression and what the recommendation is.

Link:

https://www.diagnosticimaging.com/view/variation-e...

LivinLife

Lung nodules are common findings on scans as we get older AND I agree with you that you should have been informed about it!! Esp. with your cancer history!!! I have a couple lung nodules and these were re-scanned several months later when found incidentally on HRCT for something else. Wishing you well as you pursue this....

Trishyla

I just went through the same thing with thyroid nodules. I found out that I had some nodules that had been seen on a scan in 2017. Nobody had ever mentioned them to me. The only reason I even know now is because my new, wonderful primary care doctor asked about what was done to follow up on them. Absolutely nothing.

She sent me in for a follow up scan, then referred me to an endocrinologist when they found they were still there. Fortunately, they turned out to be cysts, but I still should have been told.

Good luck, TurboKitten88. As a fellow TNBCer, I know anything that pops up in the first five years is scary as hell. Here's hoping for benign results.

Trish

2019whatayear

This is very frustrating. I hope you can quickly get a scan covered by insurance to make sure the nodule is the same size. Given your history it’s crap that you didn’t have a follow up scan months ago just to rule out anything.

SummerAngel

I have a lung nodule that was never mentioned, either. I didn't even know it was there until about 3 years after my BC when I had a CT for a different reason and the doctor told me that my lung nodule was unchanged. I said, "What lung nodule?" Ha. It was small so there was no recommendation for a follow up.

TurboKitten88

thank you guys for all the stories. I got scheduled for the follow up ct to just check. I think I’m just really needing for my sanity to know for sure it’s not cancer. Even if the chance is like 5%. I have my toddler and I’m still so messed up over cancer. I just have to know. I just hate it took me being so pushy. They told me it wasn’t necessary and hope I was ready to pay out of pocket cause it’s not needed and insurance won’t help. Kind of sad.

edwards750

I went to a clinic because of my shoulder pain. I chalked it up to lifting my twin grandsons but decided to check it out anyway. We all know how it is with a BC DX every ache and pain is troublesome.

Anyway this PA ran tests for pneumonia and said they were negative so she ordered a chest X-ray. It came back with a lot of lung modules. She freaks out and said I needed to go back to the cancer clinic where I had my treatment. I had had 33 rounds of radiation. She also said it could be scar tissue. I said I would wait for the radiologists report. She said he would agree with her. He didn’t and said the X-rays were normal. That was 5 years ago.

Lung nodules are very common.

Good luck!

Diane

TurboKitten88

My CT scan is tomorrow. I will update after i get my results. In case anyone comes looking at this thread in the future

4kids4dogs

Good luck to you tomorrow!!!! Please post and let us know ...

LivinLife

Best with the scan Turbo! Yes, please let us know how it goes and once you get results....

K-Gobby

TurboKitten.....Praying. You enter and just take a deep breath and ask God to give you courage to just be, I was told years ago i had a spot or two in my lungs. It was during that whole body scan mess in the 200's. I told a customer at the coffeehouse i ran and she freaked. She said get checked right away. That was 17 years ago. I have a CT Friday. I figure whatever they find they will tell me. And like my dermatologist, when i would go in freaked on one spot he would say normal from aging. But the one next to it. That one concerns me.

Peace of mind. That is important. Looking forward to optimistic results.

TurboKitten88

Thank you guys so much the east part is over. Now i just have to wait for the results lol

TurboKitten88

I had my scan on Thursday at 730 am… it is now Monday at 530 pm. I have never had it take this long to get a result.

HomeMom

When they did my PET scan there was a nodule on my lung. I had a CT scan half way through chemo, another CT when I finished chemo, and yet another one three months after that to check on it. It is normal to have a nodule on your lung. One bout with bronchitis can do that to you.You're not wrong!

TurboKitten88

My scan was Thursday the 5th at 7:30 am. Today is the 11th. Called the cancer center yesturday as no one has called me yet. They said everyone is behind and no one has my results yet. I hate waiting. Today is also the day i got the call 4 years ago that i had cancer. I will never forget who i was with, what i was going, where i was....every year i think the pain is gonna fade but so far for me it has not.

LivinLife

Sending positive thoughts and support your way Turbo! I imagine you will hear soon now - it has been a while as you said - I'm glad you called them! Maybe that will move you up on the priority list a bit.... I know you'll let us know.....

TurboKitten88

after a long wait I finally got my report that states still present butnot changed! So so happy to just have the peace of mind!!!

LivinLife

Soooo happy for you Turbokitten!!!