I have pleural based lung issues. Is it cancer?

Good afternoon- I just saw your post. This must have scared you a bit. Without going into detail about the findings of your CT, I agree that you should have a second opinion. Mayo is a perfect place for this.

How long did you smoke or are you still smoking? I believe that anyone who smoked/smokes is a high risk for cancer.

Have you called to make an appointment?

Merry

I hate to admit it but I've been a smoker for almost 50 years. I haven't made an appointment yet as I'm still unsure about what might constitute a problem and what doesn't. Knowing my pulmonologist doesn't want to re-scan for a year leaves me feeling it must not be serious. But the logical side of me thinks this can't all be "normal" and I'd rather know earlier when it may be manageable than later when it's too advanced. Question for you before I call - I'll be coming from another state so I'll have to plan for air, hotel, etc. How long should I allow for an appointment /and or tests - one day, two days, more? AND thank you so much for responding.

I've been reading many of the other postings on this site (lung cancer) and see that so many of them have large conversations going on. Not the same with me. Doesn't anyone have the same situation as me or is what I'm dealing with a rarity? Pretty hard to feel supported when I can't seem to find support 🙁

Hi, Nothing is rare. I'm now 85, I was exposed to asbestos from 1955 to 1974, while aboard US Navy ships, I also smoked some of that period. After retiring in 1974 I stopped smoking. In 2000 I had my 1st chest X-ray ever followed by a CT scan; plural thickening, scarring, calcification, and many nodules, had a needle biopsy of the largest one, negative for cancer. My pulmonologist sent me for CT scans so often I refused for several years. They now use a low-dosage scan so I continued scans at least every 6 months, in 2018 a nodule in my upper left lobe became cancerous resulting in a lobectomy . Mesothelioma., cancer of the plural I believe is caused by asbestos only. My cancer was determined to be caused by asbestos more likely than by smoking.

@registrar- Good afternoon. I think that a person who has smoked for 50 years and doesn't have any symptoms is a rarity. Have you told your pulmonologist that you feel something is wrong and would like a CT scan NOW rather than later?

If your pulmonologist turns you down after explaining your symptoms, leave him and find another. You don't need that kind of doctor. Use your intuition as your guide. Do you already have a hospital that you want to got to?

Merry

I do like your idea of a second opinion, or Merry's idea of a different doctor all together. If you aren't getting your questions answered, or you aren't feeling heard, then that isn't helpful. It can be so frustrating as the concerned patient. It sounds like it's been 4 months since your last CT. The pulmonologist seems to be taking a wait and see approach, and they haven't determined that the nodules are cancerous for sure, but you aren't risk free. I do agree that a year is a long time to wait for the next scan. If the nodules were showing no change scan after scan, then I personally may be more comfortable waiting a year, but not this early in the process. Everyone has a different comfort level.
Depending on where you live, it can sometimes be difficult to change health care locations. There are many great healthcare systems across the US. I'm not deterring you from trying to come to Mayo, I just don't want you to rule out another good facility that may be right in your back yard especially if this is cancer, and you need repeat visits. The National Cancer Institute maintains a list of centers: https://www.cancer.gov/research/infrastructure/cancer-centers/find. These are all very good, very well known, health care facilities.
This is the link to start a request for a Mayo Clinic appointment: http://mayocl.in/1mtmR63
The 'help' link in the upper right displays a phone number for the various location Appointment Coordinators. This team would be able to guide you through the process of becoming a Mayo patient.
Please keep us posted and let me know if you have other questions. The group may not have all the answers, but unfortunately most of us have felt that we've been left to advocate for ourselves through the process.

It sounds like your 2000 CT had results very similar to mine. But it also sounds like it wasn't detected as cancerous until 2018. That's a long time. How are you doing now? I know pleural tumors can also be caused by a metastisis which is why I'm concerned about that one random 5mm nodule that is not pleural-based (which could be the primary lung cancer). You can see why I'm so confused. I hope you are doing well and if you feel like sharing your journey, I'd be interested in knowing more.

Hi, Merry - they have done two, one in May and one in August. Now they want me to wait a year (til August 2024) for another scan. I don't want to wait that long, especially knowing pleural tumors (meso or metas) are both very difficult to treat.

Thank you so much, Lisa. I live in South Carolina so I have (all within 4+ hour drives) access to Mayo in Jacksonville, Duke Medical Center in Durham, NC and another cancer center in Augusta GA. Atlanta is a bit further out (but an easy flight). I'm not a worry-wart nor do I think the worse case scenario, but at 64/65 years old, I don't want to be left on someone's back burner. If my current doc doesn't want to do a repeat scan in February (6 months from the August scan), nor want to do a PET scan, I will definitely seek assistance elsewhere. That's why I'm here - to see what others in similar situations to mine have done, and what they recommend so I can make the best decision for my health. Thank you all for responding. I was feeling a bit alone out there....

Hi Registrar- Good morning. Mentors cannot give medical professionals. We use our own experiences to support and give members recommendations based on their experience. I am a patient also.

This doesn't sound very clear to me. It must frustrate the xxx out of you. Can you have a sit-down or conference call with one of your doctors to find out what the test results mean? Something sounds off here. A year to wait?

Have you stopped smoking or has the doctor refused to treat you based on continued smoking (if you are still smoking)?

Merry