Bone cancer

A place for people affected by primary bone cancer (including osteosarcoma, Ewing's sarcoma and chondrosarcoma) to support one another, ask questions, and share their experiences.

Difficult to biopsy osteochondroma/osteosarcoma?

wichmam
Posted by

Hi everybody. 

I just joined this group because I've been dealing with an assumed osteochondroma for a few months now that causes a lot of pain and affects my ability to walk, move, stretch, etc. As my orthopedic doctor put it, it's "bigger than the average bear", and it has a cartilage cap that is borderline of whether or not they consider it a sarcoma. This means that everything about it has been confusing, and we planned on waiting to see if it grows but after a couple months I've gone stir crazy with being barely capable of walking at times, or hurting when I'm in bed or just move it wrong. Doctors are always afraid to call it cancer until they have a definitive diagnosis, but due to the size and location, my doctor is afraid to biopsy, so I've been waiting for my transfer to oncology. (Already been waiting 2 weeks, as my doctor determined the transfer necessary). However since it's not officially diagnosed, I'm at the back of the list for oncology, so I get to keep waiting because nobody will give me answers! Has anybody else experienced an "osteochondroma" that was difficult to officially diagnose, and was it actually an osteosarcoma? 

latchbrook
Posted by

Hi  and welcome to the online forums

I'm afraid I can't answer your question, as I've just popped over from the melanoma group when I noticed that your post had gone unanswered, but wanted to welcome you.

It doesn't look like the bone cancer group is a very active one so you might not get a reply. I thought I could point you in the direction of the ask a nurse section of this site where you could post your question. The nurses aim to get back to you within two working days. Alternatively you could also speak to someone on the Macmillan Support Line. It's free to call and will re-open on Tuesday at 9am.

Best wishes

 "Never regret a day in your life, good days give you happiness, bad days give you experience"

What is a Community Champion?

Canary Vindaloo
Posted by

Wichmam,

      I had chondrosarcoma in 2013. National orthopaedic hospital said at the time that biopsy is unreliable on these things and recommended a wait and see. That turned into surgery for me which was all good and I have been clear for a while now. Talk to the nurses. We are a rare group even if we don’t want to be. You’ll probably find phone calls if mine on line as mine was inside my tibia!

Best wishes

Steve

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Canary Vindaloo
Posted by

Not phone calls! Pictures!

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wichmam
Posted by

Thanks for the input! I actually am scheduled now with an orthopedic oncologist who will remove my tumor next week! We will do pathology after but he's leaning toward it being benign which is a huge relief. 

I had so many doctors say osteochondromas don't hurt, this doctor says sometimes something changes that causes pain and it never gets better. So glad I should be done with this soon. Thanks everybody!

Tubulartina
Posted by

Hi Wichman I was just wondering how you got on ? My husband had just had an osteochondroma possible chondrosarcoma removed and we are waiting for results . He was diagnosed 12 years ago with an osteochondroma - it has just grown very slowly . He never had any pain or problems so left it until February this year . It was biopsied ( using guided CT ) in April and that did not show any malignancy but then they talked about false negatives on biopsies . Surgery was done 10 days ago . To be honest it’s been a bit of a performance - we live 200 miles  from nearest bone sarcoma unit which doesn’t help . 

TT

UpperMichigander
Posted by

Hi there,

I know this thread is old so I fear this message of mine will sort of just get lost in the great internet beyond! 

I've had a lump on my sternum for 17 years. When I first had it looked at I was told it was a benign cartilage growth and that it was fine. I was told that if it ever started to hurt or get larger to then have it re-evaluated. Fast forward 17 years, I decided to ask my current GP to diagnose it. He ordered x-rays which came back "highly suspicious for malignancy". I then had an "abnormal CT scan". They then did a core needle bone biopsy and I am currently awaiting the results of that. It has now been 9 days (7 business days) since the biopsy and I am utterly beside myself waiting for the results. My GP seems oddly unaffected and unconcerned about it. He said that if it did transition into a malignant mass that it'll likely be low grade. My question to anyone here is, did any of you have a benign chondroma that transformed into a malignant one? And if so, what malignancy was it: osteosarcoma, chondrosarcoma, etc? Also, how long did your bone biopsies take? My GP said that the many bone biopsies for bone masses come back inconclusive and that ultimately the mass has to be excised completely to be able to arrive at a proper diagnosis. If anyone has any advice, info, tips, words of wisdom I would be forever grateful. I am in utter despair with this and can barely function I'm so scared. I have a two year old daughter and spent my 38th birthday last Friday crying in my bedroom alone, telling myself I was surely going to die of bone cancer. I have a tiny shred of hope that the images may have looked malignant but that the cells within the mass will come back benign. Maybe that's me being ignorant. My head just keeps spinning and I could really use some help. 

I sure hope everyone here is doing well and in good health. 

All the best,

Kelly 

Tubulartina
Posted by

Hello Kelly

I am very sorry to read your post .

my husband had a benign osteochondroma that turned into a chondrosarcoma. 

He had the osteochondroma diagnosed in 2006 and it was 2018 when he had the cancer diagnosis.

His lump had changed size  ( it was on his hip at the top of his femur ) but was not painful. 

The biopsy came back negative but because of it’s size it was removed anyway and the post op histology showed some malignancy but low grade . He recovered well from the operation . 

he is now 14 months post surgery . His next check up is in about 10 days. He will have check ups for 10 years . 

He was treated at the oxford Nuffield hospital . This is 200 miles from where we live so not easy. 

Please feel free to ask any questions. 

It is a scary lonely time - but there are people out there 

TT

dee87
Posted by

Hi there,

I was diagnosed with osteochondroma in my left hip 1 year ago.  just got another MRI and there has been no changes.  I have been in a lt of pain lately on and off. this last flare I have been limping when I was and If I put pressure on my leg its a sharp pain.  I am wondering if it is hitting nerves.  I am scared but considering surgery and just wondering since your husband had it if he now has a normal functioning leg and how long was his recovery? Thank you!

wichmam
Posted by

Hi! 

I had a golf ball sized osteochondroma removed from my leg. My leg is perfectly normal after, it's been just over a year! However, it depends on what type of surgery they do. One clinic wanted to remove it assuming it was cancer. They would've taken much more bone and muscle tissue and it would've impacted my walking. The other clinic (who I had do the surgery) removed as little as possible. Hope this helps. 

dee87
Posted by

Hello,

Thanks for your response! I have been to 2 different orthopedics and they believe the osteochondroma is completely benign.  Was your growth in your hip?

UpperMichigander
Posted by

Thank you so much for the response. I was delighted to get it. 

Ive calmed down a bit since my post but the lump is aching tonight which has turned my mood to worry again. I was so hoping to have the biopsy results back before the weekend but alas, they did not come yet. In my heart I fear this lump has transitioned into a malignancy. I pray it is low grade and removable. 

I can’t tell you how happy I am to hear that your husband got his removed and I’m even happier to know that removing it proved, once and for all, that there were in fact malignant cells in there, even though the biopsy said otherwise. I’m glad he’s doing well post-op but I know those regular follow-ups are going to be a lot of work... it’s ok though. Totally worth it!! 

Since all of this has gone down I’ve read quite a bit about core needle biopsies not always providing accurate results. All the more reason to get this mass cut out and GONE! 

Thank you again for the response. I appreciate it more than you know. 

Wishing you and your hubby all the best!