When lung nodules are suspicious of metastatic disease

[jessie4paws]

Has anyone had adenosarcoma spread to lung nodules (secondary metastatic disease) followed by some type of treatment? Surgical resection, ablation, short course of stereotactic body radiation (SBRT)? Wondering about tx modalities, success, long term risks.

[Merma Moderator]

Sorry to say, I may be in the same boat. I have a lung nodule that has been doubling in growth for several years and showed up with uptake on the PET scan in September and again in December. In September, they took a biopsy and it was not cancer. In the December scan, it is brighter, so they're doing a second biopsy. in January. I will be following your posts. Best wishes with your treatments.

[jessie4paws in reply to Merma]

I will be doing several consults mid-Jan. Hope to figure out which option to go. Thanks for reaching out. We can all use the support! I would love to follow you as well.

[FierceFriend in reply to jessie4paws]

I will be looking for updates from both of you as I had two lung nodules show up on my last CT scan and I’m going for my next scan in January. My doctor made light of them but I’ve already had cancer spread to a distant lymph node and it’s concerning to me. Thanks for sharing.

[Merma Moderator]

Just came back from my lung biopsy. I'll post the results as I get them. They should know if the biopsy is malignant by the end of the week. This time it is solid, so it is a little more concerning.

They are also doing a microbiology workup and adding a test for dipnech, which a friend of mine suggested. I don't have any symptoms, but none of the drs thought it was weird.

[Bootz2023 in reply to Merma]

🙏

[Merma Moderator in reply to Merma]

The biopsy results came back: endometrial adenocarcinoma. Waiting to hear from the onc. I Last spring, I started having terrible blood counts while on Ibrance 100 mg. It's a drug that is used 3 wks on and 1 wk off. I had to take more and more time off between cycles. After I had a recurrence in my vaginal cuff in September, he kept me on the Ibrance but lowered the dose and also kept me on anastrozole because there was hardly anything there and the tumor mutations hadn't changed. I've only been on the 75 mg since December, after the lung nodule lit up in December. I am very curious to see if the mutations are the same in this lung nodule. It's possible that he could keep me on this regimen if the mutations still haven't changed because, at this dose, I will be able to take the Ibrance regularly. We will see.

[Bootz2023 in reply to Merma]

I am so sorry to hear this. I hope you hear from the oncologist soon and you will know how best to proceed. 🙏🙏

[Merma Moderator in reply to Bootz2023]

It's funny, but I'm in a totally relaxed frame of mind now. The doctor reminded me that we ARE treating this as chronic decease with active monitoring. That really calmed things down for me.

The lung nodule will be treated with either cryoablation or radiation and I will stay on the current systemic regimen (Ibrance 75 mg and anastrozole) until the molecular sequencing comes back and then WE will figure out the best way to go. I (and the dr too) think that the Ibrance worked, but I was just off too long between cycles and clearly the anastazole cannot work on it's own in those cases. So, we think that staying on Ibrance on the regular cycles could go on until it becomes too toxic at this dose and then switch out. It may (probably) be time to switch out the anastrozole to fulvestrant or imlumestrant, though.

Honestly, I have made my peace with cancer as a chronic decease and that it will come back. I think what was really bothering me was that I wasn't being listened to and that I do know what I am talking about regarding my treatment. So, when I wanted to lower the dose of Ibrance, both the circumstances (dr out of town and fill in drs would only make wait until I spoke with my dr to change anything) and the fact that my dr really wanted to keep me at the higher dose, were what contributed to this recurrence.

Bottom line: For me, endometrial cancer is a chronic decease. It's mostly controllable and treatable as long as I am well monitored (that's the part the was lacking this last time). However, personal advocacy is vital to this process and education about my version of the decease really helps me advocate. Yes, the cancer will recur, yes, the current regimen will eventually fail, and yes, I will always know the menu of options and be more assertive about the management. Lessons learned!

P.S. If anyone with endometrial or uterine cancer has a estrogen receptor positive and /or progestrerone receptor positive and HER2- cancer, she MUST look up and keep up with the research in breast and metastatic breast cancer. It takes about 3 to 5 years for the research to be applied to our cancer. SHARE has very good information about hormonal breast cancers in webinars and links.

[jessie4paws]

After 3 separate consultations to explore which option (radiation, cryoablation, wedge resection) is best for my situation, I have decided to proceed with a wedge resection because I feel I need to get as much information I can from a tissue sample while under surgery, if possible. There are many possibilities such as: an enlarge nodule (8mm), a new type of cancer, sarcoma metastasized, or something else, and hopefully not a non-diagnostic conclusion. Since I am currently healthy otherwise, I am saving the other 2 options (ablation and radiation) for the future if need be.

I'm scheduled Valentine's Day for a wedge resection of the right lung. Hospital stay is expected to be 1-2 nights. Do expect to have some pain and discomfort but will push through this by pain medication management and support from family/friends. Praying for a good outcome & helpful information that can benefit my medical team / tx plan in order to control cancer and enjoy life a bit longer.

[Merma Moderator in reply to jessie4paws]

Hi there!

How are you doing after your surgery?

I just finished my last radiation yesterday. Still waiting for the molecular results to come back. Feeling fine - a little tired.

[jessie4paws in reply to Merma]

Surgery went well. I was able to go home the next day. Been taking it easy, deep breathing and walks. Incisions are healing nicely. Nodule was metastasis from sarcoma. Waiting on the full pathology report, CT scans and consults with surgeon & oncologist Feb 29 to plan ahead. Keeping positive. Glad we are both feeling fine. Rest up!

[Merma Moderator in reply to jessie4paws]

It sounds like you are recovering nicely. I’m so glad to hear that.

[Merma Moderator]

I know that it is relief to come to a decision and that you carefully compared all the options. I will also pray for a good outcome and easy recovery for you.

[jessie4paws]

Had an updated CT and consults to review pathology report of R-lung wedge resection. They assumed wrong, it did NOT metastasized from my uterine adenosarcoma! That's the good news. The shocking piece is that it is a different kind of sarcoma found in the lung. A soft tissue tumor called Inflammatory Myofibroblastic Tumor (IMT). The 2 sarcomas look very different. May refer me back to a geneticist. Also a suspecious L-lung nodule dissapeared, poof! They say it could have been inflamation. Will continue surveillance with next 3 month CT.

[Merma Moderator in reply to jessie4paws]

Wow, that is quite a bit of news! How are you feeling? Genetic counseling doesn’t sound like a bad idea - especially in light of the new cancer. Good to hear that lung nodule s can disappear.

For me the ngs results came back with some new motions. But right now the dr wants to keep me on the Ibrance and same ai. I’m thinking of have someone in breast cancer take a look for a second opinion.