Need lung/pleural nodules advice

Bz5momma

I have a question and need advice. I feel very frustrated, almost to the point that I feel like I'm going crazy. I am now 9 years out. For the first 7 years, I was at peace with my diagnosis. It was only at yearly mammo/lab time I might have a bit of anxiety but even that subsided after a few years.

In 7/2014, I had a freak infection in the implant/recon side that caused fluid, swelling, and immense pain. I ended up septic and in the hospital for 3 days. The ID doc finally decided that it was caused by a bacteria that traveled from a previous sinus infection to my implant. One doc said they had never seen anything like it. Anyway, on the chest CT I had, it showed an incidental lung nodule that was 3-5 mm. No big deal. I'm a nurse, I know they are very common. Still, the onc never mentioned it but I remembered. I brought it up the following January at my yearly appt. He ordered another scan which mentioned an 8-9mm pleural nodule with pleural tags in addition to the other tiny lung nodule. He didn't understand why I was concerned. I had the scans sent off to another radiologist who was out of state and worked with my sister. She confirmed there were two nodules (including the 8-9 mm concerning pleural nodule) and told me to talk to my onc about monitoring. Including the original, I've had 4 scans, all of which say something different. I just had another one Thursday which said a have a few pleural nodules where there was once just one. A PET scan was originally ordered but denied by insurance. My onc and his case manager have both blown me off, not returning any calls. I had gotten a second opinion last year from another onc who said if I had a PET, the spots would light up but were too small. My only option is to wait. Wait for symptoms to appear, for the existing ones to grow, or for more to show up. At the time of their discovery, I was incidentally tested for all of the illnesses that cause nodules and all tests were negative.

What concerns me the most is that where these nodules are located is very close to where my BC was. The original tumor was nestled in my ribs, at the outermost edge of breast tissue. My SNB was negative but another axillary node that was 4-5 cm away was grossly positive for cancer. The docs were unable to do any further scans at the time of my tx as I was pregnant. I never finished all of the tx either as my onc was confident that they got it all and I was only on tamoxifen for 1 year. Ugh. I just feel that once I hit that 5 year mark, I was brushed off even though there are studies that prove otherwise: http://clincancerres.aacrjournals.org/content/19/2...

Lung nodules can mean absolutely nothing, however, each time I have a follow up CT, the reports are never consistent and the number seems to be increasing. This last report didn't even have hx of breast cancer listed.

What would you do if you were me???

pajim

Bz5momma, I'm going to give you two sides of the coin thoughts on this. They will differ enormously from what most of the ladies on this forum would suggest, and they are right too.

First of all, the nodules are most likely incidental. You know that. The reason each scan reads a little different is most likely due to the fact that you breathe through the scan. Each scan would look different because the picture shows a more or less inflated lung. Since the nodule(s) are so small, it's hard to pinpoint what's going on.

My next thought for you is that doesn't matter even if the the nodule is cancer. Data show that monitoring for mets and therefore treating very early does not improve survival. So there wouldn't be any reason to treat until these things have grown large enough to set off a PET or to biopsy. You're a ways away from that now.

Now: I'm telling you not to worry and to try to move on. Monitor the nodule(s) over time. From a psychological point of view, if you had a PET scan and it was negative, would you stop worrying? Consider that carefully. What "proof" are you looking for?

Most of the other ladies here would tell you I'm wrong. And they're right [in a way]. You're feeling like your medical team is not on your side. That is not going to help you feel better. On a practical level you could appeal to the insurance company. You could pay for a PET yourself. (see my comment last paragraph). You can ask for [usual] monitoring of lung nodules. You can take your latest scans back to the person who gave you a second opinion last year. You can switch care teams altogether.

I'm sorry I'm not good at the "how not to worry" part of things. Others will be along with more helpful comments along those lines.

Bz5momma

pajim-thanks, everything you said has gone through my head and I tend to center on this side of rationality. Waiting and seeing. I did have the 2nd opinion onc tell me something similar. She said the if it were a recurrence, time really doesn't matter. Cancer is so cunning. Evil and dastardly. I hate this. I'm surrounded by helpless, supportive people that have never been through this. Coming to this website helps me tremendously.

Thank you.

bevin

HI there, I'd be concerned too; and when nodules grow that normally when doctors show some level of concern. I'd perhaps do three things.

1. call radiology and ask the cash price for PET, explain insurance will not cover and can they quote the cash paying patient cost.

2. perhaps get a second consult from a pulmonologist. I'd want a pulmonary doctor to weigh in on the scans.

3. You are ER+ can they put you on arimidex or tamoxifen. I assume since you are so many years out you are not on anti hormonals.

4. finally, if you don't feel your Onco is paying enough attention to your concerns, I'd also offer you may want to get a consult with another oncologist that you feel more comfortable with.

Hoping this is all nothing and wishing you good health.

Keep us posted.

theresa45

Bevin has given you excellent advice, and I just want to encourage you to follow it. I have small nodules (3-4mm) nodules in my lungs that are being monitored and have not been confirmed to be cancer. I also had a PET/CT in August due to a lymph node (6mm) in my neck. The PET/CT showed a number of mediastinal lymph nodes and a biopsy of the neck node confirmed breast cancer. The node in my neck was watched for a year (didn't grow or shrink) before I finally insisted on a PET/CT. In another post, I saw that your original lump was ignored for years, so I'm sure you know the awful feeling that comes from delaying treatment. While small lung nodules do not show up on PET, a PET/CT now may be able to confirm whether or not you have any other node metastasis. I believe that finding and treating metastasis early can increase the duration of survival. You are young and have a beautiful daughter who needs you. I hope and pray that your cancer never returns. Hugs!

momand2kids

I want to agree with the pulmonologist suggestion. Get a good one and have them look at these scans. I was being watched for a 7 mm noduLe and the pulmonologist was great and really reassured me.  It eventually just disappeared.  

KBeee

I would echo the advice to get another opinion. It may be the same outcome, but you should not feel like you are being blown off. I was blown off when I approached my ex-oncologist with s love because he thought I was not at risk for recurrence. He was very wrong. I now have an oncologist that I feel listens

Bz5momma

The pulmonologist is a good idea. I sent this most recent scan to the radiologist that works with my sister to see what she has to say. She is appalled by the inadequacy of the previous reports and the total disregard for my history when writing the reports. Once she looks at them and throws her two cents in, I will find a pulmonologist. At least I can get another set of eyes on what's going on.

What is also disheartening is that I've had to ask for every scan I've had so far because my onc has not even discussed what the plan of care will be for surveillance. I've asked myself what would make me feel better about all of this and I think it would be if I felt like I had a doc that listened to me. Reassuring but yet prepared just in case.

Thanks for all the advice! I'll update as soon as I hear something.