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Anyone have cancer with unknown primary?

Cancer | Last Active: Nov 9 1:19pm | Replies (155)

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@dkoontz

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.

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Replies to "I completely understand how scary to have this diagnosis going though it myself. I did 6..."

All the different treatments and the process always sounds so complex.
So you had enlarged lymph nodes where abouts?
Sounds like you found the perfect treatment for your body. Being a fit an active person definitely would have helped your recovery.
My dad is 80 but very active for his age. He dances and plays tennis and never smoked or drunk. He doesn’t really have any symptoms except a bit of a husky voice here and again.
He is seeing private specialist on Friday so hopefully they can give him more attention then we have been getting from the public system. I feel like there are just so many delays and communication between doctors etc aren’t very good.
If you have any questions you think should be ask please let me know as any help is most appreciated.
I’m glad your getting back into your social lifestyle.

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.