Anyone have cancer with unknown primary?

@wasserja
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Hello,
Thank you for sharing your story. I know how overwhelming this is and please know that you are not alone.My husband Joe started this same journey in February. He has HNC SCC CUP He first had tonsillectomy. They did not find primary. Very painful, about 3 weeks recovery, insist on pain meds. Next he had neck dissection to get rid of mass which was in his submandibular gland, also removed lymph nodes and a tiny part of jaw. This surgery hurt him the least and he recovered fairly quickly. They still did not find primary. We then went to Mayo Clinic for a second opinion. Mayo did TORS still could not find primary. TORS very painful like tonsillectomy . He lost 25 pounds total from 3 surgeries.
They were recommending targeted radiation and standard chemotherapy.Seven weeks. We decided to come back to Georgia for this. The 3 surgeries were a pain but the goal was to find the primary which we did not but since they eliminated these areas the radiation could be targeted. It was 10 minutes a day and he says not too bad with very few side effects. The chemotherapy was once a week 6 hours. He brought his iPad and watched movies.Took nausea pills and slept a lot. I left him be and did stupid stuff like mindless mall shopping, coffee with gals or baked on the chemo days.
Now a month out from finishing these he is regaining taste, strength, all motor movement and only has to shave on one side of his face. He can spit again and his smile is less and less crooked. We will have a follow up in 3 months.
The Mayo second opinion cost us about $14, 0000 but worth every penny for our peace of mind. We came home knowing that we had excellent care here and trusting the process.
Try to stay in the 24 hours you are in, be supportive and take care of yourself. It can get tense and is overwhelming but thank goodness for modern medicine. Namaste 🙏 MAC

@maryannecrawford thank couch for your reply:support. My brother in law is having a very hard time but just 5 more days til mediation complete and healing begins. He has pneumonia RLL and is having a heck
Of a time. Please pray for him and all those with this struggle .

@carlajones101 I will him in my prayers.

My Mom has Carcinoma of unknow primary. Her Ct scan & MRI shown no tumor or lesions, but the test came out from her fluid in her lung said she has some cancer cells. She had not symptom. The oncologist gives her chemo every week with Taxol & Carbo for 3 months and I don't know what is going on after that. She's 74 years old and I don't want she has chemo for long time. These Chemo drugs are strong for her. Is anyone out there had cancer like her and what do we can do. Thanks.

@khanhngd, I can understand not wanting to see your mom having to take strong chemo medications for a long time. I assume they will monitor the response to treatment after three months to determine next steps. When will your mom complete the 3 months of chemo? How are YOU doing?

@sylvia67
My sister has cancer and they can’t find where it is coming from. She is starting chemo Wednesday,but her legs have blown up and she can hardly walk..she has terrible pain in her right side of stomach. Lost 30 pounds. Has anyone has there legs blown up like a balloon? She is on diuretic but no help

@sheridonaldson yes m sister just received that diagnosis, she is in a lot of pain but is starting chemo Wednesday. They have no idea where is is located but they said it is stage 4 and has math a year to live. I am devastated..so we will start chemo Wednesday oh and her legs are so swollen she can hardly walk, we are 71 but have been in great health until this…we are twins so now I am worried. Anyone else had their legs blown up like up like this

@jmw184
My brothers feet were swollen not legs but that was from the steroid . His chemo changed over time (clinical trials) and the side affects were always different but no swollen legs

@jmw184, how is your sister doing? Did her oncologist and symptom management nurse help to resolve the swelling legs?