Stage 4 central mediastinal mass

[Guys17]

After a lobectomy 3 years ago, I now have a stage 4 central mediastinal mass. No reoccurrence in the lung or spread to other organs. I have been told that only palliative treatment is possible and offered (covid permitting) chemotherapy with immunotherapy. Has anyone experience of this cancer?

[Denzie Moderator Volunteer]

Did they do a biopsy yet? If yes, what did they tell you about the genomics of the cancer?

If this was me, I would be looking to get a second opinion at an NCCN affiliate.

nccn.org/members/network.aspx

The past 3 years have seen a proliferation of treatments for stage 4 cancer. The results of that genomic testing will tell them which one is best for you. Currently the best option for treatment if there is no targetable mutation is a Chemo doublet with an immunotherapy so it looks like your doctor is planning for standard of care.

Someone who has had a similar experience should be checking in soon.

[Guys17 in reply to Denzie]

Thank you Denzie both for the information and the work you do here.

[Seaspray298]

Waiting for your reply to Denzie regarding biopsy. What size is this mass? Did they mention radiation?

[Guys17 in reply to Seaspray298]

I have not had a biopsy on the mass. Adjacent lymph nodes are adenosquamous – rare. I shall ask size etc at next consultation (phone). Too many adjacent nerves etc for radiation / surgery.

I’m not sure that I am fit enough to travel to second opinion, and would I want the covid exposure – due to age and co-morbidity I am shielding.

On healthunlocked I am hoping for a private message exchange of info with patient or carer about symptoms and progression of central mediastinal mass and treatment if they have had it.

[Jenniferroseolson]

Don’t let the word ‘palliative’ bother you. Stage IV treatment is never actually expected to cure the cancer...so “palliative” means to treat and control the chronic disease. Yes, it is terrifying to think you will always live with this cancer. But the stories of hope abound on this site. I have lived for more than five years with stage IV NSCLC and am doing very well on immunotherapy after having four and a half years of chemotherapy (carboplatin, pemetrexed) and another few months of a doublet of immunotherapy (Yervoy plus Opdivo) before my current maintenance treatment of Opdivo monthly. As to the kind of mass, my cancer presented in lung nodules, pleural space, brain, adrenal gland, and liver. The fact that yours has not spread beyond the mediasteinum is really good news. I assume you have had a PETscan and MRI of your brain to be sure your brain is clean. Best wishes.

[Guys17 in reply to Jenniferroseolson]

Thank you Jenniferroseolson for this encouragement. I have had Pet and MRI scans. I have had enlarged lymph nodes here for the last year but the mass is new. I am fortunate - no cough. But covid precautions are isolating and makes medical information exchange difficult.I do hope your treatment continues to work well for you. Best wishes.