Small cell carcinoma with no primary

Welcome @pbishop3, Having an unknown primary source of the cancer has to be confusing when the doctors can't seem to provide the answers that you want, but it does happen. It sounds like your husband is in good hands, and getting the treatment that he needs, localized radiation and systemic chemotherapy.
Here are a few links to past discussions regarding cancer with an unknown primary:
https://connect.mayoclinic.org/discussion/primary-cancer/
This discussion was started long ago, but has had some activity in the past year:
https://connect.mayoclinic.org/comment/917026/
Do you happen to know if the doctors performed any molecular testing on his tissue, fluid, or blood? Are they radiating spots in his lungs and/or elsewhere?

Thanks for the information Lisa @lls8000. Matt has had no molecular testing done at current hospital. He had 31 radiation treatments on his Rt inguinal lymph node. No radiation anywhere else. We will have a CT scan April 17th to get a great report that they got it all!

Please consider doing a follow up second opinion with an NCCN affiliate. If Mayo Clinic is not close to you me of the others may be. Most are conducting clinical trials in small cell cancers. Like Mayo, they will be more likely to have someone who has more experience with small cell cancer of unknown origin than a regional cancer center.
https://www.nccn.org/home/member-institutions

Hi @pbishop3, I'd like to add my welcome and to tag @cindylb on this discussion. Her husband also has cancer of unknown primary, which is being treated as lung cancer. It can be such a frustrating diagnosis.

What type of chemotherapy did he have? How is he doing? And you?

@colleenyoung Thank you for responding.
Matt’s initial scheduled treatment was carboplatin with etoposide and immunotherapy until the day of treatment, when the oncologist learned there was no primary found. The immunotherapy was removed from the treatment plan. A radiation oncologist was brought in to our long strange trip.
Our plan was four cycles of chemo for three days every three weeks. Radiation five days a week for fifty one days.
The chemo drug the next two sessions was cycplatin which works with the radiation. We were back to carboplatin for fourth chemo session. Our CT is scheduled for May 17th, not April that I said earlier.
Matt has been extremely tired these seven weeks after treatment. The carboplatin has kicked his butt adding nausea to his side effects. Compazine and zofran have become his favorite snacks.
Matt and I are looking forward for some good news. Only positive vibes here!

Hello, Colleen referenced me above. My husband has Cancer of Unknown Primary (CUP) for SEVEN YEARS!
When he was first diagnosed they gave him a few months but here we are (thankfully)! I hope you and your husband have a similar experience with longevity.
My husband has had both chemo and radiation over the course of these years. He is currently having a flare of his cancer and is doing radiation to the new spot where the cancer has appeared.
His cancer was discovered in his lung and a nearby lymph node. It has spread to his spine and hip and most recently to a soft tissue tumor on his back, which has now spread to the lymph nodes in his right armpit. We tackle each reappearance, primarily with radiation to the new spot(s). It will then disappear for as much as two years and come back. Very odd. They have tested in every way possible but can't determine a type of cancer. He used Keytruda along with his Chemo (very short one week treatment with chemo)....he has other health issues which make Chemo very difficult for him and as you're learning, chemo is a rough sport. He may use Keytruda again at some point. It is the only immunotherapy the testing shows might work and at that.....might not be very successful. I hope this gives you a perspective on another patient battling the very odd CUP diagnosis. Big hugs to you and your husband.

Thank you for taking the time to reply @Cindy1b. What a journey you and your husband have traveled. I hope continued longevity for your husband. We have not received the “report card” from our first round. Where are you receiving treatment and is it where you started the treatment? We are so new we don’t know what we don’t know. Some are suggesting molecular testing done. We will look into that if we don’t get a perfect outcome in May. We are on hold until then.
Take care of yourself and your husband. Hopefully warmer weather coming will come soon and last a long time.
Pam

Hi @pbishop3, I just wanted to check in and see how you and your husband are doing. Was he able to have his follow up CT? Have some of the chemo side effects started to diminish, or is he still struggling? Any tips that you would like to share on how you have been able to make him more comfortable?