Bone Cancer: Adamantanoma

heatherk_28

Hi, I am new to this chat group. I am looking for others who have had a rare bone cancer called Adamantanoma. Often, this type of cancer can be found in the jaw. Mine was in my left tibia. If anyone knows where I can get information/research, please let me know! Thanks!

shelly9501

Hi, I had a rare bone cancer too, it was called Ewings Sarcoma, NOT adamantanoma, but mine was in my left tibia. Did you have a limb-sparing surgery?
How is the prognosis,

Shelly:o)

mandy85

Hi! I also had adamantanoma. Luckily, my first visit in the hospital I met another kid who also had it so from the very beginning I've been very informed of what the disease entails. I also had it in my left tibia and had an allograft transplant in 1999. I've looked at a few web sites and they all say the same thing. It's a rare cancer and nobody really knows where it came from. Oh well. I hope you're doing well now

KatlynP1994

I had it too...
i had adamantinoma too, I had surgery in 2003 where they took out 7 inches of my tibia and replaced it with cadaver bone + 2 metal rods and held it together with 15 screws..since its been awhile since u posted, how's the prognosis? Any other health problems?

Bob Barrett

Also new looking for any help Adamantinoma
Hello, I also am new at this. I found out back in Dec 08. location left Ulna.
Had it removed Jan 30th,09. I was told just today that it has moved to
same arm lymph node. If you have any hopeful words sure would help...Bob

Bob Barrett

mandy85 said:

Hi! I also had adamantanoma. Luckily, my first visit in the hospital I met another kid who also had it so from the very beginning I've been very informed of what the disease entails. I also had it in my left tibia and had an allograft transplant in 1999. I've looked at a few web sites and they all say the same thing. It's a rare cancer and nobody really knows where it came from. Oh well. I hope you're doing well now

Please help with any good info.


Hello, Found out in Dec 08 Left Ulna. Removed Jan 30th. Just found
it has gone to same arm lymph node unsure what to think about this
aswell could use some helpful words of hope...Bob

andy63

Bob Barrett said:

Also new looking for any help Adamantinoma
Hello, I also am new at this. I found out back in Dec 08. location left Ulna.
Had it removed Jan 30th,09. I was told just today that it has moved to
same arm lymph node. If you have any hopeful words sure would help...Bob

I too had adamantinoma
Mine in my right tibia part cut out 2years and 3months back still trying to walk. Keep your chin up Bob, my philosophy: Don't worry about the things you can't change work on the things you can. I went in for 1 op and a week in hospital and it ended up 3months in hospital and 7 surgeries. Get all the information and options from your doctors to make the best decisions. Unfortunately I found out, the patient is the only one to make the decision on what to do for themselves. Its hard but with the right info you can do it.

Bob Barrett

andy63 said:

I too had adamantinoma
Mine in my right tibia part cut out 2years and 3months back still trying to walk. Keep your chin up Bob, my philosophy: Don't worry about the things you can't change work on the things you can. I went in for 1 op and a week in hospital and it ended up 3months in hospital and 7 surgeries. Get all the information and options from your doctors to make the best decisions. Unfortunately I found out, the patient is the only one to make the decision on what to do for themselves. Its hard but with the right info you can do it.

Thanks for reply... Your right about the decisions.


Andy, Thanks for the reply. found out yesterday that it's in my
lymp nodes. They ( the Doc's ) seem to think that since Chemo or
radiation don't seem to have any effect that my time frame is around
3 to 5yrs. Would you have any info on that subject or where to go for
up to date info. Once more thanks for your reply........Bob

Bob Barrett

andy63 said:

I too had adamantinoma
Mine in my right tibia part cut out 2years and 3months back still trying to walk. Keep your chin up Bob, my philosophy: Don't worry about the things you can't change work on the things you can. I went in for 1 op and a week in hospital and it ended up 3months in hospital and 7 surgeries. Get all the information and options from your doctors to make the best decisions. Unfortunately I found out, the patient is the only one to make the decision on what to do for themselves. Its hard but with the right info you can do it.

Thanks for reply... Your right about the decisions.


Andy, Thanks for the reply. found out yesterday that it's in my
lymp nodes. They ( the Doc's ) seem to think that since Chemo or
radiation don't seem to have any effect that my time frame is around
3 to 5yrs. Would you have any info on that subject or where to go for
up to date info. Once more thanks for your reply........Bob

andy63

Bob Barrett said:

Thanks for reply... Your right about the decisions.


Andy, Thanks for the reply. found out yesterday that it's in my
lymp nodes. They ( the Doc's ) seem to think that since Chemo or
radiation don't seem to have any effect that my time frame is around
3 to 5yrs. Would you have any info on that subject or where to go for
up to date info. Once more thanks for your reply........Bob

Info is hard to get
I am in Australia and because our tumors are rare and little known about the adamantinoma I had to rely on my doctors for all the information. I could only find info about my treatment (involving case studies on other patients) not about my condition That is one reason I am on this site as I can not find anything or anybody to talk to about this in my country. I have a sister who works in a library and can access some of the medical sites for me if I want but I don't like to fill my bead with unnecesary clutter. I found this changed my whole thoughts on the way I see things; I think my life it getting back on track now other than the doctors visits and xrays to check there are no more little surprises; and I choose to enjoy everyday the way I want to. My friends and family don't see me as much and we don't always agree on things because now I spend my time with my partner and children and doing the things we want to do not what everyone else wants to do. Time is precious, no matter how small my wants and dreams are I don't put anything off now I put it on my calender and do it.

Unknown

This comment has been removed by the Moderator

heatherk_28

Adamantanoma
I apologize for not posting a long time ago. Here I am 18 years later and have not had a reoccurence. My tumor was in my left tibia. My surgery was performed at the Mayo Clinic in Rochester, MN by Dr Michael Rock. He removed 3/4 of my tibia and replaced it with my fibula also from my left leg. He used two screws to hold it in place and used bone graphs from my left hip to fuse the bone in place. My fibula has now grown to the width the tibia once was. I still get checked out every two years with x-rays of my leg and lungs.

Luckyjinx7

Adamantinoma survivor
I'm a survivor too. I just had limb salvage 8 months ago... Dude anyone else start out with osteo fibrous dysplasia? Apparently there's some research that suggests these non cancerous tumors can develop into adamantinoma as mine did. I'm still waiting for a new CT to see if it's in my lungs. It has a 20 year recurrence rate. I found out I had OFD in 2004 and adamantinoma last year. I also had it in the left tibia. I'm glad I found this group... It is so rare that it felt impossible for awhile to find anyone to relate to.

Rene83

Adamantinoma

Hi Everyone

My name is Rene I have been diagnosed with cancer in October 2006. My treatment is in UK Oxford. My doctors said there were two options but we have chosen an Ilizarov method.

My adamantinoma was in my right tibia therefore 15cm of my bone was cutt off. An ilizarov frame attached to regrow 15 cm.  I had an ilizarov frame for almost 2 years on my leg, there was few complications but in the and we managed to regrow 15cm. After that I had few different casts and another surgery as my ankle and foot didn't work as they should. In total it took me almost 4 years to go back on my feet. Since 2010 October I can walk normally without the crutches. Have special insoles in my shoes to modelise my feet when I am walking. Of course I have some pain.. Now much less then before but can say that I am doing fine. Of course there are some things I can't do as my leg is sensitive and I need to becareful however I booked a sky dive in Jun so will see how it goes.

Apparently I had adamantinoma for years since I was a kid. And it was just growing and eating my bone. I am glad that somehow I end up in Oxford and chosen an Ilizarov, although it was the hardest and the most painfull time in my life, I am here now and trying to leave as normal as possible.

All the best to everyone if any one wants to contact me you can email me on Renata.Adamik1@gmail.com

aussi-intraining

adamantinoma

Hello,  I am new to the web site. I was diagnosed with adamantinoma in Jan 2013. I've had 10cm of my right tibia removed and replaced with a implant.  I have so many questions and feel more than a little lost as there does not seem to be much information on the internet. Any info would be greatly received. I'm being treated in London, UK. Many Thanks Sarah x

 

colleen50

Bone cancer-Adamantanoma left tibia

Just joined, have had fibrous dysplasia since agd 7 which developed into this rare bone cancer which was just diagnosed this past February 2013. My surgery is scheduled for June 3 2013. They are replacing my tibia with my fibula. Has any one had this procedure? I know my fibula will eventually grow stronger but was wondering how long this will take. Also how long to walk and bear weight on my left leg. ANY INFO WOULD HELP, as this is a rare cancer it is hard to find anyone who has gone through it.

colleen50

Luckyjinx7 said:

Adamantinoma survivor
I'm a survivor too. I just had limb salvage 8 months ago... Dude anyone else start out with osteo fibrous dysplasia? Apparently there's some research that suggests these non cancerous tumors can develop into adamantinoma as mine did. I'm still waiting for a new CT to see if it's in my lungs. It has a 20 year recurrence rate. I found out I had OFD in 2004 and adamantinoma last year. I also had it in the left tibia. I'm glad I found this group... It is so rare that it felt impossible for awhile to find anyone to relate to.

 Fibrous Dyspalsia >Adamantanoma

 Fibrous Dyspalsia left tibia (have had over 43 years) developed into Adamantanoma<diagnosed feb. 2013

Felicidad

Adamantinoma

Hello, I was just diagnosed this week and completed testing for spread yesterday.  Because it is so rare and not well understood it is hard to make decisions.  I am 33, female.  It was found in my left tibia and I was diagnosed by biopsy.  Not sure when to get the wide margin surgery as it seems like a major surgery and Im not quite sure it is going to affect my mortality.  Will update as I get more info.

jposa002

Felicidad said:

Adamantinoma

Hello, I was just diagnosed this week and completed testing for spread yesterday.  Because it is so rare and not well understood it is hard to make decisions.  I am 33, female.  It was found in my left tibia and I was diagnosed by biopsy.  Not sure when to get the wide margin surgery as it seems like a major surgery and Im not quite sure it is going to affect my mortality.  Will update as I get more info.

Hi my son too was diagnosed

Hi my son too was diagnosed recently, he is 14 yo.  We are looking to get a second or third opinion.  There seems to be the allograft option, donor bone.  And the fibula option form the other leg or from the same leg, seems like each doctor specializes in one procedure.  I'll like to know what are the outcomes with the different procedures. 

jposa002

aussi-intraining said:

adamantinoma

Hello,  I am new to the web site. I was diagnosed with adamantinoma in Jan 2013. I've had 10cm of my right tibia removed and replaced with a implant.  I have so many questions and feel more than a little lost as there does not seem to be much information on the internet. Any info would be greatly received. I'm being treated in London, UK. Many Thanks Sarah x

 

Hi
Hope you are making

Hi

Hope you are making progress in your recovery, my son has not had surgery yet, but he may have the same procedure you had.  I know the progress is made slowly, I would like to find out how is your recovery progressing?

Rhea Kutche

jposa002 said:

Hi
Hope you are making

Hi

Hope you are making progress in your recovery, my son has not had surgery yet, but he may have the same procedure you had.  I know the progress is made slowly, I would like to find out how is your recovery progressing?

I am sorry that I have not

I am sorry that I have not answered you and to hear about your son,has he went through the surgery?    Recovery was 4 years after my surgery.  The second time I had Adamantinoma in 2009. I was just released and told I have beaten this cancer January 2013.  It took 2 years of physical therapy, 3 times a week, which is very painful, but I had to endure it, to learn to walk again. The emotional and physical toll it takes upon a person, I think it is hard for others to understand.  I wore a boot for 2 years, and used crutches.   At the beginning, I used a wheelchair, and the walker, and the worked up to crutches.   

I walk with a limp, and sometimes with a cane.  Depending on the pain.  Even though I have beaten this cancer, life is forever different.  There are alot of things I can no longer do, but I am finding out each day what I can.

I hope I have helped, please feel free to ask me anything. 

My heart goes out to your son and family.

Sincerely,

 

Rhea