I'm currently in remission for a rare form of bone cancer, called telangiectatic osteosarcoma. I finished chemo in June and had my limb salvage surgery in April. My July scans showed no evidence of disease. Now I seem to have another problem.
I've been having pain in my upper left thigh/butt area. I went into my oncologist and they did a bone scan and MRI on the area, the only thing that showed up was something in my uterus, sitting directly on a nerve down to my leg. My bone scan was clean. They said that it doesn't look like it's related to osteo, but after meeting with the radiology department and the gynecology department they aren't sure of what it is exactly. It doesn't look like a cyst, but it is fluid filled. They scheduled me for a PET scan on Friday. My surgical oncologist's PA says he's pretty sure it's not cancer, but wants to be 100% sure. He said it could possibly be a hemorrhagic cyst.
I know it's very rare for sarcoma to spread to the uterus, but unfortunately, I already have a rare subtype of a rare cancer, so I tend to freak out a bit. Has anyone had a similar experience where they had no clue what it was from an MRI? Would a CT be better? I know the PET scan will show if it's cancer or not, I'm just looking for someone that has perhaps had similar symptoms before?
Hi, DazzledStar. I don't know if you will read this before your PET scan, but I wanted you to know someone was thinking of you. It sounds like you have certainly been through a lot. I had uterine cancer 4 years ago but it was the more common "endometrial adenocarcinoma". I know aot about that one but not so much about saarcomas except they tend to be nasty, don't they? I have read that PET scans can "light up" for reasons other than cancer, i.e. inflammation or infection. I would think the only definitive way to know for sure would be a biopsy. Would you be able to see a gynocological oncologist (gyn/onc)? That would be my recommendation to you. Please let me know how things turn out for you!
I actually live in Davenport, FL. Davenport, Iowa is much larger and more well known than we are, lol.
My PET scan was fine, I was a bit uncomfortable due to my pain, but the scan itself is nothing. My husband ran into my oncological surgeon's nurse while I was in the scan and she said she would be sure to call me Monday asap after they got the results of the PET. Depending upon what it says, I will most likely end up seeing a gynecological oncologist at Moffitt Cancer Center (where my osteosarcoma was treated) so they can figure out how to handle whatever it is. I'm lucky to already be at the best place in the state to handle tumors, cysts, etc.
If it does turn out to be something bad, I'd honestly rather have another form of cancer aside from my sarcoma spreading. Sarcoma is nasty and once it goes to your organs your survival rates drop so dramatically that it's terrifying.
Thank you for your kind words and support! I will update after I receive a call tomorrow!
Quote:
Originally Posted by kraklowm
I see we both live in Davenport (I assume Iowa!) How did your test go today?
I forgot to ask how you are doing with your cancer? Are you still in treatment or in remission now? Either way, you are in my thoughts!
Quote:
Originally Posted by kraklowm
Hi, DazzledStar. I don't know if you will read this before your PET scan, but I wanted you to know someone was thinking of you. It sounds like you have certainly been through a lot. I had uterine cancer 4 years ago but it was the more common "endometrial adenocarcinoma". I know aot about that one but not so much about saarcomas except they tend to be nasty, don't they? I have read that PET scans can "light up" for reasons other than cancer, i.e. inflammation or infection. I would think the only definitive way to know for sure would be a biopsy. Would you be able to see a gynocological oncologist (gyn/onc)? That would be my recommendation to you. Please let me know how things turn out for you!
I am almost 4 years out from my diagnosis and aside from a couple of little scares on chest CTs, I have had no further problems. I see my gyn 2x a year.
You will be in my thoughts and prayers. Please feel free to let me know how you are doing and how I can pray for you. I know how hard it is to wait for results (at least it is for me!) Sweet dreams to you tonight!
Well, I received a call from my onc's office today and my PET scan was clean! It's some sort of cyst sitting directly on my sciatic nerve. My doctor discussed the surgical option with me. He wants to wait 2 weeks to see if my pain dies down (unlikely since it's getting worse) and have me come in. He said that they would have to go in through the back because of the location. Out of all the places the cyst could have gone it decided to settle down right on my sciatic nerve, how aggravating.
I'm a bit nervous about the prospect of surgery. My onc said it would be a rather long recovery period since they would have to go in through my back, so I'm not thrilled about that. I'm ready to be rid of this horrible pain though, so I don't know of any other option.
Thanks for thinking of me! I'm glad you're doing well now!
I am SOOOO relieved to hear the results of your PET scan!!! It certainly is aggravating that this cyst is where it is and is causing so much pain for you. I am praying that it will shrivel up and go away forever, and you won't need surgwery at all!
Just want to let you know there is another cancer called uterine sarcoma and this has nothing to do with bone sarcoma. It is a different type in different location.
So it does not mean you would have uterine sarcoma which is entirely different. I had uterine sarcoma and I am cured (had chemo in 2000).
