How do I get a call back from clinicians?

@abob, I can't imagine how deflating it is to still be working through this situation weeks later. You're correct to be frustrated and confused.
I'm fortunate to be seen in a health system where all specialties, care centers, and labs are under one umbrella. Everything doesn't work perfectly every time, and they too are struggling with the demands of many patients, and not always enough caregivers, or general staff. Based on your story and the stories of others I've come to feel grateful for my own set of treatment teams.
I would think the surgeon's office would only want you there after they have all of the info from the oncologist. The surgeon's office has asked you to keep the appointment, so for now, that's the plan that I would go with. I would certainly call late on Friday or Monday morning (if the appointment isn't first thing in the morning) to verify that everything is in place. You could also ask the oncologist's office if they've spoken to the surgeon too and remind them of the Monday appointment.
I hope this is resolved for you and your husband soon.

Thanks so much for your reply Lisa.

Yes we are going to surgeon appt on Monday, but concerned that surgeon will say why are you here, and we’ll need to explain, then have him say I’ll need to speak to oncologist. Oncologist made it seem to us that time is of the essence.

I certainly understand that there are many patients, but getting no response for 3 weeks (since CT was resulted on 4/15) seems unprofessional and uncaring.

Yes, I have reiterated the appt date via several venues - in office for weekly blood test, left vm on clinician phone line, submitted request via online patient portal. I only once received 1 response that office is awaiting dr call back. We feel let down by oncologist.

Just thinking how we could make best decision if no definitive clinical direction. Might a PetScan perhaps reveal if cancer specks remain in adrenal gland?

We got “emergency appt” with oncologist’s NP today. Yes, oncologist and surgeon have discussed.
- Oncologist says best survival chance is Adrenalectomy.
- Surgical oncologist says he cannot remove functional adrenal gland no mass, but he will discuss my husband’s case at Tumor Board next week.
- So Oncologist recommends next best is Targeted Radiation, then monitoring.

Should we get 2nd opinion from another surgical oncologist?
Does Targeted Radiation have bad side effects?

I’m even more confused and concerned.

Oncologist said/implied that Adrenalectomy is (best/only) option to live.
- If so, why wasn’t surgery performed immediately when CT scan found the adrenal mass midChemo?

Treatment proposed is Targeted Radiation. Targeted on what? Mass is gone.
- How can it target possible cancer specs that cannot even be lit up by PET?

Monitoring will be CT and PET every 3 months.
- Would cancer specs create a new tumor? And Adrenalectomy be done then?
- Or will cancer specs travel around just causing more cancer, such as in the adjoined kidney?

@abob, a CT scan doesn't confirm a mass is cancer, which is why I would guess that they didn't do surgery immediately. It sounds like your Oncologist and Surgeon have different ideas about what's going on and how to treat it. I always recommend a second opinion. I got one after my first diagnosis and again after it metastasized to my brain. I flew to MD Anderson for the second one. That was despite the fact that I thought my team was, and is, remarkably responsive and thorough, which both second opinions confirmed.

A surgeon is a specialist who is called in to do a job. You may never see them again, but you and your Oncologist need to be good friends. He/she needs to be someone you trust completely. In your shoes, I would be looking for a second opinion now, and I'd be targeting the best cancer institute in your area. At the same time, I'd be contacting a Pulmonologist in your Oncologist's medical center, someone he or she knows. And I'd be asking your Radiologist the Radiology questions. It takes a team.

The good news is that it doesn't sound like they have a confirmed cancer diagnosis because if they did, the path forward would be clear. Hang in there. Stay positive. Work on doing what you can and be persistent. Keep giving us updates as you receive them.

All the best to you.

Thanks for your reply. PET scan confirmed cancer . Since Interventional radiologist could not get good biopsy, didn’t know if if’s lung metastasis or adrenal cancer. Now we know lung metastasis bc LC chemo eliminated the mass.

Surgeon is a surgical oncologist. Both he and oncologist said to finish chemo then recheck. Since there was a possibility that chemo would eliminate mass, but Oncologist would still think gland should go, then I think Adrenalectomy should have been performed when mass was present.

I understand surgeon and I understand oncologist, but I want what’s best for my husband. We are where we are now, and it looks like husband will be subjected to radiation bc oncologist fears cancer specs and another PET now will not reveal them. Or we get a second opinion surgical oncologist.

@abob, there is no such thing as "lung chemotherapy". All chemotherapy attacks the quickly-replicating cells in your body. Chemo doesn't recognize cancer, at all. That being said, there are different chemotherapy drugs. For example, my nonsmall cell EGFR Exon 19 mutation was treated with a combination of Carboplatin and Pemetrexed. However, Carboplatin and a couple of others are used both in the treatment of adrenal cancer and lung cancer. Do you know which chemodrugs were used? Maybe that's what your doctor meant by "LC chemo". For example, Carboplatin is a platinum-based chemotherapy drug that is used to treat both cancers, but Pemetrexed is not used for adrenal cancer.

There may be multiple reasons your doctors are reluctant to surgically remove the adrenal glands. They sit on top of the kidneys, so there is the usual risk of bleeding and infection, plus the risk of damaging nearby organs. In addition, they produce the hormones that regulate blood pressure and sodium and potassium levels in the body. Ongoing low sodium levels are why I have a Nephrologist on my team. They also regulate cortisol levels, which affects metabolism and blood sugar levels. Sigh, I get those checked regularly as well. And I still have both of my adrenal glands.

It sounds like you do feel you have a good relationship with your Oncologist. I know how hard it is to feel that we are completely in their hands, but we are. They're the ones who went to school for a dozen years, including residency and everything else they have to go through to practice. And they're the ones reading the latest medical studies, trying to keep up with this rapidly developing field.

All the best to you and your husband.

Yes, exactly, those 2 chemo drugs used for post Lobectomy adjunct treatment dissipated the small mass found on adrenal gland.

Oncologist thinks adrenal removal is best because it is attached to kidney and is concerned about any cancer specs remaining in adrenal getting to the kidney. Surgeon said adrenalectomy is not a difficult surgery.