How do you deal with monitoring a lung nodule and anxiety?

@millard, Keep trying. There may be communication going on behind the scenes. The radiologist may not contact you (my experience is that they don't generally talk to patients, but different health systems may work differently). The radiologist may be communicating with your oncologist. I would continue to request more info from the oncologist's nurse, or whoever you can. And you're right to feel that this shouldn't be this hard.

Hi, after 3 emails from my doctor, she finally responded yesterday afternoon. She felt that her remarks from my pet scan should be enough.
those remarks were (quote)
(Looks stable and reassuring.)
I told her I needed to know if the nodules in my lungs were growing or getting smaller.
She finally said that they appeared smaller.
She wants me to have a pet scan every three months to stay on top of any changes.
I am asking every four to five months. She is definitely not in favor of my request. Am I wrong in trying not to have too many pet scans? I guess I will have to research this question further.
So far, I have had five pet scans in a year and a half.
I am living with MB cancer, going on one and a half years now.

Hi @millard, It is so hard to know what the correct schedule is for scans, and you are right to bring up any questions and concerns with your oncologist. I've stretched 3 month scans to a 4 month schedule when my cancer has been stable. But next I'll be having a PET two months after a CT, because of a new area of concern. I think flexibility is important. Unfortunately, we can't always plan further out than the next scan. Your oncologist wants to keep a close eye on the nodules and that's good too.
You mentioned in a previous post that the PET was hard on you, and some people do justifiably struggle with all the scans. It's not easy, from the physical and the emotional sides.
Maybe have the 3 month PET, and then if everything looks stable, and the uptake number remains as is, then push for waiting for 4 months or longer.
Have they talked about a biopsy of the lung nodule, to confirm if it is related to the MBC or maybe it's non-cancerous? Sometimes the nodules are easy to get too, but if they are deep in the lung then they can be difficult to access. Maybe that's a next step depending on what the PET shows in 3 months.

Hi Lisa, thank you for your kind.
Remarks.
And yes, I am pushing for a four-month time frame between my last Pet Scan and my next one due in Feb., pushing for March 2024.
Back in August of 2022. I asked
my oncologist if I could see a pulmonologist to look at my lungs' nodules. She said ok.
I met with The doctor in pulmonology. She found a nodule that could be biopsied.
It turned out that my breast cancer had indeed spread to my lungs.
Had I not asked to see this doctor
in P, I do not know when my oncologist would order a biopsy.
With this new results from the P
doctor. my oncologist put me on
Verzenio(not sure of spelling).
I took it for 40 days 300mgs a day and almost died from this drug.
I developed blood clots, massive weight loss, and massive bowel problems. Ended up in the hospital for four days.
I am now on an estrogen blocker that seems to quiet the cancer.
However, I would need another biopsy to see if the cancer is dormant.
The oncologist has not offered that to me. and I don't think she will.

Hi @millard, Knowing that the nodule is from the breast cancer and not another cancer is helpful when the doctors look to treatments. Sorry that you had such a hard time with the Verzenio, these meds can be very effective in some people, but the side effects are certainly detrimental to others. Scary stuff!
It sounds like the estrogen blocker and monitoring with scans is reasonable at this time. I hope you are doing well.

I am doing ok good days and then others that are full of sheer exhaustion.
I have extreme pain in my hands
at night. I guess this is the effect of the estrogen blocker I am on.
I should be very grateful that my cancer is quiet for now, so I am told.
I feel ashamed that I am so depressed waiting for the next PET scan. Not know if I will get a decent and full reading of the next scan.

You should never feel ashamed of depression. I used to grade mine: if I thought there was something going on that would predictably trigger depression, that was understandable.
Yes, that’s stupid. Reactive depression, ok. Non-reactive depression, not ok.

Find someone to talk to that will
be more positive than ‘you should be grateful’. There are scores of local and national support groups. If you can’t locate one, I’m betting someone in this awesome group can.

Hi @millard, I wish you felt better. Be sure to be honest with your providers. It's easy to feel down depressed and not very hopeful when you don't feel good. If some of the pain can be alleviated, that may help. Cancer is a heavy weight, and at times we all feel that depression sneaking in. That's perfectly normal, and it's good that you recognize it, and then you can take steps to work against it. As Pam mentioned, try to be mindful of triggers for you. I've done much better with scans once I felt more informed about the specifics of my cancer, and future treatment options. Knowing what steps we'll take when my cancer comes back has made me feel better throughout the process. I have a plan, and that gives my back some feeling of control, and most importantly it gives me hope. Talk to your doctors about what to expect if your cancer comes back. Ask about new treatments that may be approved soon.
When is your next PET? I have one coming up in early January.

Thank you for your kind and helpful remarks.

I have several lung nodules and since they are stable I have a CT once a year. I was told by several pulmonologists that nodules are common and can be caused by many factors. As long as you’re comfortable with your pulmonologist I wouldn’t worry too much. I see my pulmo every 6-8 weeks and we discuss the nodules as well as my asthma. My advice is to be proactive. If you are not getting answers etc. Get a second opinion. 😊