Tests and Worry and hx of Sarcoma and worry

WriggleNose

I hope I'm posting in right place... upcoming tests listed towards bottom... but how I got here:.... so, in 1997 I had a rare Stage III (some said it was Stage IV), multicellular synovial sarcoma - they think. Doctors never could exactly figure it out. I was 11-13 during this stage of my life. I underwent a large bone graft (cadaver), muscle resection and a shit ton of radiation. I don't think doctors were very optimistic I would live to adulthood. They never educated me about the likehood of developing a second cancer later in life. I've had health issues my whole life since including SLE, Hashimoto's thyroiditis, etc. I manage the autoimmune disease well.

Over the last year I've went through a divorce with a highly unstable narcissistic person. I have four children ages 4-10. I haven't been feeling well. I have had a lot of things going on and got kicked to Medicaid after the divorce and attributed a lot of things to stress. I've been to urgent care a few times, ulcers, stress, possible flare.

I have an appt with a dermatologist coming up for what will likely be another pre cancer removal.

Risk wise, My paternal grandmother had breast cancer. Two of my great aunts. My mom has breast issues.. no one talks about anything. I have a higher risk bc I have childhood sarcoma and a high amount of radiation, and have thyroid disease. There is a lot cancer and disease in my dads side of the family, I am considering testing for LI-Fraumeni if insurance will cover.

So. I found a lump. Like a hard pea, maybe smaller than a pea but when I feel around it there seems to be more hard fibrous stuff attached to back of it if that makes sense. I have breast implants and have had several issue since with them. I have very little breast tissue so anything that isn't implant is very obvious. I also have been have a lot of groin ache, swelling of nodes on right side of groin, menstrual changes (have been many times to doctor about it- but they say it's nothjng) and the my right thigh hurting (where I had sarcoma).... I've been having a random bouts of chills anytime of day, and night sweats.

My doctor felt it and immediately ordered a bilateral ultrasound. She said they are often cysts but said it felt “odd." I had never seen this doctor before. That is tomorrow. She also wrote me a referral to the gynocologist. I see them on Monday...

She also ordered a chest x-Ray... why? Is that usual?? That is also tomorrow.

She then ordered a full body bone scan.. is she looking for sarcoma or thinks I have breast cancer and is looking for Mets? That's on Friday.

She wrote a referral to a oncologist and I'll be seeing them late next week as long as results are back.

She also took a few vials of blood but didn't tell me what for... going to call for results tomorrow afternoon.

I'm worried. I'm worried I wasn't pushy with doctors or as diligent as I should have been under the burden of a really rough year. Is that a normal run of tests???

Thanks for reading my long post.

UPDATE 9/23: Ultrasound was BIRADS 3 or 4, there is some discrepancy posted elsewhere but bc of my personal and family hx will have biopsy.

X-ray report came back all clear except scoliosis, but that is my test that they were not paying close attention. I have an abnormality in one of my ribs. Radiologists that take their time - always note it. Radiologist’s that rush, don’t. But had bone scan anyway... so not too bothered by rushed report.

Bone scan was Friday. At beginning they said 35-40 minutes, then did additional shots and took 55 minutes total. They told me bc of “complexity" - they were going to need extra time for report which I will have some point this week. They did immediately give me images and told me to take them to any appts I have. Ive had many bone scans before - most recemt 5 years ago. I looked... it wasn't right. But I'm just trying to Be patient until the professionals review things.

I'll update when I have more info.

Moderators

WriggleNose, wow, you are going through alot right now. It sounds like the doctor(s) is truly on it, just trying to help you make sense of the symptoms. They may have ordered the X-ray as well due to breast implants, and your history. Are you also getting a mammogram? Based on when you posted this, we guess that all these tests are happening today. We are thinking of you, and all you are going through. Please check back with us and tell us how you are!!

WriggleNose

Update: Did chest x-ray yesterday and b/l ultrasound. The bone scan is Friday. I was able to take ultrasound images with me - and expect radiology report by tomorrow. Unfortunately because of my insurance, the worst medicaid plan in my state (trying to switch to a better one this month); I was not eligible to go to a breast center for imaging. Anyhoot, the ultrasound tech was very very fast and didnt take many images. She really just focused on the lump. Based on that, the preliminary ultrasound report she provided, not the radiologist yet, listed it a complex cyst. It was a little bigger than I thought it was as well. Looks like my blood work came in too but they told me the doctor needed to sign off on it before they could send it to me. So, back to waiting.

odat4me

Hi.

I am sorry that you are going through this now. I also had a sarcoma as a teen (osteogenic sarcoma). Not as rare as yours. I did have a bone graft as well and ended up losing my leg above the knee 10 years later (after a lot of surgeries). I had chemo no radiation but I did get a lot of chest xrays. We have another thing in common a narcissistic husband. I told mine that I wanted a divorce 1 month before finding out about my breast cancer. (I hope you do not you have been through so much). I did underestimate my risk for further cancers. I would home and say one and done. I am still under my husband's insurance but I do still want to pursue divorce. Marriage time to a narcissistic person is not good for your health. Praying and thinking good thoughts for you.

Stacy (ODAT4me)

WriggleNose

Thank you @odat4me - you can PM me anytime regarding the trials and tribulations regarding divorce from a narcissist. It is a different ballgame. I hope I do have breast cancer either... I also hope I don't have any cancer, but I am also making sure that I continue to pursue whatever is going on until I know for sure!

When I had my sarcoma, there was a very small chance I would live more than 5 years, so they didnt really think through my long term use of my leg, and did not do any reconstruction of the area where the muscle was removed. Needless to say, it has caused me a lot of discomfort and pain, especially over the last few years. I am sorry you had to deal with 10 years of issues resulting in an amputation. I would say, that no matter what the issue is - breast cancer or other - that is plagueing me now, I do feel like I can put up with just about anything. "Whatever it takes" like your signature says!

WriggleNose

Thank you Odat4Me - you can PM me anytime regarding the trials and tribulations regarding divorce from a narcissist. It is a different ballgame. I hope I do have breast cancer either... I also hope I don't have any cancer, but I am also making sure that I continue to pursue whatever is going on until I know for sure!

When I had my sarcoma, there was a very small chance I would live more than 5 years, so they didnt really think through my long term use of my leg, and did not do any reconstruction of the area where the muscle was removed. Needless to say, it has caused me a lot of discomfort and pain, especially over the last few years. I am sorry you had to deal with 10 years of issues resulting in an amputation. I would say, that no matter what the issue is - breast cancer or other - that is plagueing me now, I do feel like I can put up with just about anything. "Whatever it takes" like your signature says!

odat4me

Thank you! ❤️ You are a fighter! Look at what you have been through and you are tough as nails! I know that even tough girls get scared! So I am here with you. I hope you don’t have anymore cancer! I am go into get through this but having cancer is dejavu I don’t like! This is s piece of cake compared to the first. Do whateve it takes

odat4me

BTW having the amputated leg turned out to be a blessing for me. I am doing so much now 20 years since it happened.