Confused and really need answers after many years

schastain Member Posts: 1
edited April 2023 in Bone Cancers #1
In 2007 after getting a bone scan done for right leg pain the orthopedic doctor came into the room and showed me the image of my bone scan and told me that I had bone cancer. I was stunned and so scared. I didn't know how to feel or what to think. I wanted answers and have been searching for answers ever since. I had a MRI with and without gadolinium and the MRI showed a lesion of 4 centimeters in length and it was undetermined through an MRI whether it was malignant or benign. The radioligist on the radiology report thought it was enchondroma (which is a benign bone tumor) but the border were ill defined like a typically seen. A recommedation of a CT scan and biopsy was suppose to be the next steps. I was seen at wake forest university medical center at the cancer center by an orthopedic surgeon who specialized in oncology (bone cancer). After the intial assesment that I presumed would be for a biopsy I was given a CT scan to compare with the MRI and bone scan that I previously had and I was told by the orthopedic surgeon that he felt that I had enchondroma or possibly bone infarcts - which is dead tissue in my femur that can be due to a blood clot. Not only could he not tell me how the tissue died or if it would continue to deterorate or die but he could not tell me how I had gotten the enchondroma- which is a benign bone tumor. I was very distraught by the diagnosis and when I asked to get a biopsy done I was informed that if I had the biopsy done then they would have to drill down my hip bone and into my right femur and whatever they extracted they would have to fill with a cement mixture which would require months of healing and no walking. I told the orthopedic doctor I would do whatever it took in order to know exactly what I was dealing with and that it did not matter if I was on bed rest for 6 months after my biopsy. The doctor not only refused to do the biopsy but did not recommend any treatment exceot for a follow up CT scan after 6 months to monitor any changes to the lesion.
I was outraged and fought to get a PET scan but could not obtain one since I did not have a diagnosis of cancer. The orthopedic doctor that said that I originally had bone cancer retracted his diagnosis and said that the orthopedic doctor had more authority over the situation and more medical practice with the situation that he would not go against the doctor. I was extremely beside myself after that and since then I have fought to find answers. I have not been the same since then. Since 2007 when my night sweats started they have continually came and went intermittently. My bone pain is off and on. Sometimes my right femur pain gets so bad that I fall down and can not stand any weight bearing on my right leg. It is as if it feels like my right femur breaks apart and the bone shifts completely. I have not been able to run since 2007 when the pain in my right femur started. The pain just is too intense. My right hip feels as if it it scraping and cutting into my pelvis if I walk too much.
I have recently (in the past 2 years) had an abnormal breast exam by my oncologist. I was recommended to get an ultrasound of my breasts since one felt abnormal. The radiology report showed something unspecific in my right breast. The diagnosis for a biopsy was not recommended unless I had previous treatment or diagnosis of cancer in my breast. That really freaked me out. My doctor that order the ultrasound made me fly home from california where I was working to discuss the results to me. I told him at the time that since I did not have medical insurance then I would not pursue it if medicaid did not pay for the procedure to have anything biopsied. I am concerned that what was going on in my leg in 2007 that was called bone cancer and then enchondroma or bone infarct has metastisied to my breast. I really want a PET scan or any scan that will help me but I dont know the best doctor to go to in order to get these tests or biopsies performed. Any help in this matter or input anyone would like to share with me would be an intense blessing. I have been praying for years for someone to be just be kind enough to help me. My body has been telling me there is something wrong and I have not been able to figure out what it is. Since 2007 my symptoms have gotten worse. Most of my back is now numb. I have been diagnosed by a neurologist as having nerve pain in both my upper and lower extremeties. Before 2007 I served in the military and had no issues or medical problems. I do not understand how this all happened and I want answers now before it is too late. I know my body and I know there is something wrong. I just havent been able to figure out what it is or what doctor can help me or get the tests done that I need done in order to fix the situation. Any help would be a blessing. God bless you.


  • funkygigi83
    funkygigi83 Member Posts: 1
    edited June 2018 #2
    OMG I feel as if I'm reading

    OMG I feel as if I'm reading exactly what I'm going through right now . 12cm possible echrondroma or chrondosacrcoma in humeral shaft painful very painful. Also diagnose a few months ago with fibrocystic breast disease without with debris I them. I have a nonuniontibial fracture which broke 4 yrs ago from NOTHING (fib broke as well but healed . I am for deficient and when I went to the Ortho oncologist he said watch for 6 months I asked for full body scan and said to them I have great insurance and they said no that they don't like to give e them . I also have extreme back /leg pain . I don't know what to do . I'm in constant pain and frustration now not knowing. I was curious did they ever find out what was going on with you. 

  • clinicauthority
    clinicauthority Member Posts: 1
    I always doubt and prefer seeing an Orthopedic Surgeon

    In these similar sistuations I always doubt myself and consider seeing an Orthopedic Surgeon who can carefuly diagnose me and give me recommendations. There are so many information on the internet which makes it very hard to precicely make a guess on how serious an issue is and the best treatment.

  • KimberlySmith13
    KimberlySmith13 Member Posts: 1 *

    I understand so much of this. I was diagnosed with Sciatica in May of 2022. The pain was really bad and the doctors gave me some steroids to help. Nothing helped. I went back to the doctor and was told it was coming from my bone on bone arthritis in my knees and they did x-rays of my knees. Still the pain got worse. I went back to the doctor and was told this was probably a Pinched Sciatic Nerve and I would have to go to Pain Management to get a Epidural (nerve block) in that Sciatic Nerve. I had this happen once before about 20 years ago so it made sense. But the pain persisted. By this time the pain in my back and my right leg were so bad I could no longer walk. I could not even get myself into my bed to sleep. I was forced to sleep on the sofa. I finally got X-rays and MRI ordered by the Pain Management Doctor. They said I would need the Epidural (nerve block) but they could not get me an appointment till after Christmas and maybe the first of the year.

    On Dec 4th 2022 I fell. I could not get up. Had to call for help. That night I was able to take a shower by getting on my transfer bench. But then I spent the next 12 hours tying to get off of the shower transfer bench. I ended up having to call the Ambulance and they took me to the ER. I was dressed and cleaned up. X-rays were taken. I was admitted. I stayed in the hospital from 12/05/2022 to 12/19/2022 and was diagnosed with Cancer within 24 hours of being admitted. I am told it is Biliary Cancer at first they thought it was originating from the Pancreas, then they said no. To this day they cannot even find out where the cancer started. But I was told right away that it had already spread to the bone and I had one lesion on my hip and four lesions on my back.

    I had 10 days of Radiation. The big pelvic bone on the right side is eaten up with cancer. Radiation was horrible. I was sick, in pain, tired. I thought Radiation was horrible and hope I never have to have it again but am sure I will have to have more.

    I am now in Chemo. Even though they tell me the Chemo will not cure my cancer. I wonder why I bother if there is no cure. But I have small Grandbabies and I want to live long enough for them to have actual memories of me. But the loneliness and isolation are the worst. I can get into my bed now. But I am still not walking. I do have a mobility scooter but it is on the back of my car. I cannot walk to the back of my car. To go anywhere I have to drive there. Get a stool with wheels and set it down on the pavement. Then I have to push the stool to the back of my vehicle. Then I unstrap the mobility scooter, and put down the ramp. Then manually drive the mobility scooter down. Then I have to transfer to the mobility scooter. I have to put the stool up. When I leave I have to do all of this in reverse. If the place (like my church) has a dirt or gravel parking lot I cannot go as the stool will not move on that type of service. I cannot go shopping as my mobility scooter is not equipped for shopping.

    The pain is bad. Chemo caused all my hair to fall out and my hair was way down my back. I get severe diarrhea each week. I usually have a little blood in my urine. Nothing in my life is easy for fun any more. I sit at home worried about dying. I am so confused by all of this.