Adamantanoma - Many Reoccurences

cassidyjoyh Member Posts: 2 Member

Hello all, 

I'm a 30 yo female, who has had 3 reoccurences of Adamantanoma, plus kidney cancer. Is there anyone else out there diagnosed with Adamantanoma and having such reoccurences?

Here is the breakdown of my history: 

1) First diagnosis of the right tibia in 1999 with I was 13 years old; limb salvage surgery completed - found by self due to pain

2) First reoccurence in lower right leg muscle (next to tibia) in 2004, 21 years old; second limb salvage surgery and tendon repairs procedure - found by self due to pain

3) Second reoccurrence in right groin lymph node in 2012, 27 years old; found by self examination due to discomfort and lump in groin. 

4) Third reoccurrence in right lung in 2012 - found via chest CT and body scan when lymph node biospy was positive. 

5) Additional, second type of cancer diagnosis in 2012 - Renal cell - Bilateral kidney cancer - found via same body scan in 2012 when lymph node biopsy was positive. 


As of tomorrow 8/14/15, I will be 3 years cancer-free, since my last surgery removal of tumors in 2012. Right now, my doctors are doing routine scans every 6 months to watch for reoccurence. But, I feel like we should be doing something more proactive. It's hard to push for more information of such a rare cancer; being preventative seems unheardof. I recently did some genetics testing, but everything was normal and no more insight to my outlook were provided. 

Any insights/similar stories and how you are manage your care are apprecitated! Looking to connect with others who are dealing with this rare cancer.