Anyone have cancer with unknown primary?

Hi. Thanks so much for all of the information that you shared. I have a question regarding how you became aware of the condition. Did you have any unexplained swelling in a foot?
I have what appears to be unexplained lymphedema in my foot — which to add to the confusion, came on after a couple of bad orthopaedic injuries. It did not go away. Had a fairly complete medical work up with inconclusive results. Vascular insufficiency was suggested. Results also inconclusive after two tests. One doc said 6 veins not working. Another said no vascular issues but lymphedema, probably from orthopaedic injury to lymph tissues. Earlier this month had another test at a vascular clinic with a lymphedema expert on site. Diagnosis is lymphedema. Learned how to wrap leg overnight. Soon after, had a slight swelling /tenderness of neck lymph node. Also, lots going on in the pelvic area. Saw doc. Had blood work—no results yet. However, my leg is less swollen after wrapping at night but tender to pressure. Not sure this is normal recovery from lymphedema. Sometimes it feels as though there is a rush of fluids in the leg. Very odd. By the way, I have never been diagnosed with cancer nor had any nodes treated, biopsied nor removed. I do have non-symptomatic gallstones.
Do you have any thoughts or suggestions for me based on your recent experience? Any suggestions would be appreciated. Thanks and best of luck in your recovery.

I completely understand how scary to have this diagnosis going though it myself.
I did 6 rounds of chemo (cisplantin) every Monday and radiation for 6 weeks daily. They did what they called a booster or accelerator radiation the last few. I saw my oncologist every Monday as a check in and they were fantastic to see what I needed for pain relief and such from the radiation and chemo.
I did have weird symptoms that I thought was my sciatic nerve but was running down the front of my leg instead of the back of my leg. just odd but not really uncomfortable. I had an appt with my neurologist already set up as I have transverse mellitus and they have been checking me for MS. She scheduled MRI's but thought I might be wise to also do a urine test incase of a UTI. this showed blood. Next was a bladder scan and a CTA. the CTA scan is what showed the lymph nodes. I am so grateful for this neurologist to thinking about the UTI.
This is my 3rd bout with cancer 2 different breast cancers(had mastectomy) and now a 3rd different in lymph node. I have always been very active and I now continue to be. This didn't happen right away and has taken a few months but I must say I feel great. I am back to exercising, taking classes, and enjoying going out with friends. thanksful for my wonderful doctors and enjoying my life.
Im here for you if you have questions I can help with or for any support.

I completely understand how scary to have this diagnosis going though it myself.
I did 6 rounds of chemo (cisplantin) every Monday and radiation for 6 weeks daily. They did what they called a booster or accelerator radiation the last few. I saw my oncologist every Monday as a check in and they were fantastic to see what I needed for pain relief and such from the radiation and chemo.
I did have weird symptoms that I thought was my sciatic nerve but was running down the front of my leg instead of the back of my leg. just odd but not really uncomfortable. I had an appt with my neurologist already set up as I have transverse mellitus and they have been checking me for MS. She scheduled MRI's but thought I might be wise to also do a urine test incase of a UTI. this showed blood. Next was a bladder scan and a CTA. the CTA scan is what showed the lymph nodes. I am so grateful for this neurologist to thinking about the UTI.
This is my 3rd bout with cancer 2 different breast cancers(had mastectomy) and now a 3rd different in lymph node. I have always been very active and I now continue to be. This didn't happen right away and has taken a few months but I must say I feel great. I am back to exercising, taking classes, and enjoying going out with friends. thanksful for my wonderful doctors and enjoying my life.
Im here for you if you have questions I can help with or for any support.

What treatment did you have? So how are you feeling? Did you have symptoms prior to your diagnose? Always love hearing the positive stories to give us all hope.

Yes scheduled appointment next week. He will take all the paperwork to the new specialist so hopefully they can disect it from there. He has enlarged lymph node in his neck and chest.

It’s hard because I do too much research on these topics which is scary but luckily my parents stay away from google.

Will keep you updated. If you think of any more questions to ask please let me know.

Hello @mattydlb

It looks like @dkoontz has offered you some good information based on his personal experience.

From your post, it appears that your dad will be seeing another doctor. Has this appointment been scheduled? If so, you might take the time to review all of his previous test results (both scans, blood tests and biopsies). If you notice anything outside of the range listed as normal, you might want to discuss this with the new doctor.

Figuring out where an unknown primary is located can be quite a mystery and may take a lot of detective work on the part of you and the medical team who is treating your dad.

Will you let me know if you have any other questions?

hi @mattydlb. I sorry your dad is going through this. I too had a similar situation. The cancer was found in my lymph nodes in my pelvis area. Based on the cell type (squamous cell) it pointed them in a couple of directs to look and do biopsies. Unfortunately, after many biopsies it was never found and as they monitored the growth of the lymph nodes they decided to treat based on where they thought it should be. Im in Chicago with Northwestern Med (a teaching hospital). My doctor brought my case to the tumor board for boarder discussions with all the experts. I recently had my first scan after treatment and the lymph nodes appear to be normal and no signs of cancer elsewhere. I hope this helps.

Thank you for your response. I live in Melbourne Australia so unfortunately that doesn’t help me.
Luckily we do have good medical facilities here but at the same time I do feel like every scan every test every appointment just makes it all a slow process.

My dad has seen one specialist and has organised another via a friend who has also been going thru cancer recently which gives him a bit more trust I think.

Do you have any questions or advice you recommend he mentions on his visit?

Thank you and will keep you up to date with progress. It definitely helps me feel a bit better discussing on here.