Very concerned - bone pain

Hello all. I have quite a long story to tell and dont really know what I aim to get out of this, but sometimes it's nice to just put everything you're feeling down in writing. I'm a 22 year old male and in the summer of 2017 began to feel slight pain in the mornings at the very top of my left leg. I put it down to recent medication I had been taking that had a side effect of joint pain. In November 2017 I was woken up during the night in severe pain in the same area, and this continued to happen every night. I went to the GP in December 2017 who referred me to the orthopedics department of my local hospital. They took an X-Ray and referred me for an MRI scan of my pelvis. After having the scan, I was called in the next day to see someone as they suspected a tumor within my pelvic bone. I was referred to a specialist sarcoma unit and met with them the next week who, after looking at the scan, said they believed I had Fibrous Dysplasia, a condition which causes fibrous tissue to form in the bone instead of normal bone tissue. I had numerous tests, including chest X-Ray, CT scans, a bone scan and a biopsy and nothing more came of it. At a follow up appointment, they confirmed Fibrous Dysplasia, although the doctor did worry me when he said "we may have to do another biopsy". Nothing more was said about that and it didn't end up happening. I was instructed to follow up at the sarcoma unit every 6 months for routine check ups. Anyway at my checkup this Summer I told them I was still having pain every night (the pain hasn't got any worse since it began in 2017), and taking paracetamol and ibuprofen on a daily basis for this (which I don't believe is a normal thing to need to do). He ordered another MRI scan which I had in August this year. I then found a lump in my groin around a month ago, which I went to the GP about and was told to contact the sarcoma unit myself and tell them about, which I did. I received a phone call last friday (25th October) saying I needed to come to the sarcoma unit on monday at the consultant's request, which I did. The consultant told me that the MRI has shown changes in my soft tissue and bone marrow around my pelvic bone, and wanted to perform a biopsy that same day (which I couldn't do as I drove myself to the hospital and wouldn't be able to drive afterwards). So I have a biopsy on this coming monday to see what's going on. I am very very scared. My main concern is that the first diagnosis of Fibrous Dysplasia was incorrect, but with the amount of tests they performed to diagnose it, this is unlikely. Surely if a biopsy was inconclusive they would have to perform another one to confirm a diagnosis? If this is a primary bone cancer, I've had pain for over two years now so won't it be too late to do anything about it?

I appreciate you taking the time to read this if you have, and please feel free to offer any words of advice to me as I am feeling quite isolated and alone with this feeling.

Harry

  • Hi Harry

    I have no experience of this so can't help much but didn't want to just read and run. However I would be surprised if you were diagnosed with Fibrous Dysplasia if the test was inconclusive. As the consultant says there has been changes since the diagnosis and I would treat this as seperate from the orginal diagnosis until they say otherwise. Of course this next biospy could also be benign. Try not to worry too much and fingers crossed for a good outcome x

  • Thanks for taking the time to reply. I know that statistically the chances of it being bone cancer are very low, I think there are less than 100 diagnoses in the UK every year. But the chance is always there and the fact I have a benign bone tumor already is what makes me feel extra anxious. On top of this I'm a 3rd year uni student and my work has been put on hold until I know what is going on with my health. It's just a lot to deal with I guess and it's isolating because nobody around me has been through anything like this.

    Harry

  • Hi Harry,

    Yes it can be worrying, I've had lots of tests over the years and the waiting is awful, the unknowns always worry us and our imaginations can get out of hand. Its good the Drs are running these tests for you and keeping an eye on things so I would take some comfort in that. Uni is stressful enough without this added concern but you should have the answers in the next week or so. I hope you have support from those at university including your mates - we all have to deal with the isolating experience of our illness if we don't know anyone who had been in our shoes but all we can do is let our friends and family support us as best they can. We are also here to support you  :)  

  • Hello again, just a little update if anybody is interested. I had my biopsy today (quite an uncomfortable procedure actually!) and I found out more information from the people who did the biopsy. Basically they are suspecting it could be Lymphoma, whether or not this is related to the Fibrous Dysplasia is unknown at this point. Although it's still a lot to take in, I sort of feel relieved as according to the doctor, if it were to be Lymphoma, it's highly treatable, and all this time I had been convinced I had bone cancer of the pelvic bone which according to the internet is quite hard to treat. I know you shouldn't trust Dr Google but it's human nature to investigate things! So all in all I'm feeling more positive about the situation. Will update or possibly create a new thread once I receive the results next week.

    Harry

  • Hi Harry

    Thanks for the update, glad your feeling more positive and please let us know the results when they come through.