While the article appears to indicate that it this type of tumor does not usually become malignant that it should be watched carefully and follow up is important.
Is this type of tumor something you have been diagnosed with or are you asking for a family member or friend?
While the article appears to indicate that it this type of tumor does not usually become malignant that it should be watched carefully and follow up is important.
Is this type of tumor something you have been diagnosed with or are you asking for a family member or friend?
I happened to be back at Connect, hoping to find an answer for what I think to be an IT band syndrome following knee replacement surgery. However, trying to join, I found I was already a member! It was so very good to see your reply to my post. Thank you. Somehow, I didn’t get email notification, so I’d no idea you’d written back after I’d written.
To respond to your question, it’s about me. I was first diagnosed with “enchondroma vs. chondrosarcoma” of my L pinkie (the largest incidence happen in the fifth finger) in ‘94. Sent to the Mayo Clinic, following surgery in SD, the tumor was fully removed and repacked with donor bone. At the time, while having suspicious findings, it was decided to be an enchondroma and to follow closely. With monthly, yearly, and finally a five year follow up, it’d reoccurred. In ‘09, I had my second surgery.
This time, then in Maine, Mayo, unfortunately, had been left out of the consult, and I later learned that the tumor wasn’t fully removed, according to medical notes. Then, too, surgery at the same time on the knuckle tendon I’m not sure was a good thing. Johns Hopkins biopsy, then, felt there were still more things to watch: this time it’d had a ‘permeative pattern’ which I’d understood from reading studies of it’s rarity meant not good findings. (The original SD surgeon, who’d suspected a chondrosarcoma and sent me to Mayo for follow-up surgery — my hand was simply wrapped — told me I’d have to watch this lifelong; that it could kill me. That’s when I began to collect research studies, and had learned of recurrences, symptoms and even some deadly outcomes.)
So, when I began experience pain in my pinkie in ‘18 — which I knew to be another troubling sign, as was a third recurrence — I insisted on an MRI which now showed three nodules, vs. only the one. When the orthopedist told me it was all the same enchondroma and not to be concerned, I knew he was wrong, and sought a local second opinion. And when that second surgeon said he’d not seen anything like it before — and that I knew more about it than he did — and that I should simply amputate, I reached out, again, to Mayo. Of course, still, I didn’t want to lose my finger unless absolutely necessary.
They’d said to come “sooner, vs later”, and I went right away. In September ‘18, with the new diagnosis of chondrosarcoma, I had the amputation, once it was verified that it hadn’t yet metastized. Seemingly, metastasis for this kind of tumor is just as rare as it’s conversion, and now, instead of periodic hand tumor following, I’m doing periodic lung CT scan following, as I had some lung nodules worthy of following (discovered earlier, but mostly disregarded), which now needed closer following. Metastasis for this tumor, generally, is to the lung.
However, after the December and March scans were just fine, the July scan showed two nodules had doubled in size which, thankfully, upon repeat scans in October turned out to be a false alarm. So, we’ve just moved from three month scans to six months. But I’m well aware from all the research that these extremely slow growing lo-grade (grade I) tumors can and do seem to become more active in one’s 7th or 8th decade. I’m 71...
Having read in the research about how there had been conversions to some folks, like me, I didn’t know if I’d find anyone in this forum having had the same experience.
Thanks, again, for listening and responding,
Linda
I happened to be back at Connect, hoping to find an answer for what I think to be an IT band syndrome following knee replacement surgery. However, trying to join, I found I was already a member! It was so very good to see your reply to my post. Thank you. Somehow, I didn’t get email notification, so I’d no idea you’d written back after I’d written.
To respond to your question, it’s about me. I was first diagnosed with “enchondroma vs. chondrosarcoma” of my L pinkie (the largest incidence happen in the fifth finger) in ‘94. Sent to the Mayo Clinic, following surgery in SD, the tumor was fully removed and repacked with donor bone. At the time, while having suspicious findings, it was decided to be an enchondroma and to follow closely. With monthly, yearly, and finally a five year follow up, it’d reoccurred. In ‘09, I had my second surgery.
This time, then in Maine, Mayo, unfortunately, had been left out of the consult, and I later learned that the tumor wasn’t fully removed, according to medical notes. Then, too, surgery at the same time on the knuckle tendon I’m not sure was a good thing. Johns Hopkins biopsy, then, felt there were still more things to watch: this time it’d had a ‘permeative pattern’ which I’d understood from reading studies of it’s rarity meant not good findings. (The original SD surgeon, who’d suspected a chondrosarcoma and sent me to Mayo for follow-up surgery — my hand was simply wrapped — told me I’d have to watch this lifelong; that it could kill me. That’s when I began to collect research studies, and had learned of recurrences, symptoms and even some deadly outcomes.)
So, when I began experience pain in my pinkie in ‘18 — which I knew to be another troubling sign, as was a third recurrence — I insisted on an MRI which now showed three nodules, vs. only the one. When the orthopedist told me it was all the same enchondroma and not to be concerned, I knew he was wrong, and sought a local second opinion. And when that second surgeon said he’d not seen anything like it before — and that I knew more about it than he did — and that I should simply amputate, I reached out, again, to Mayo. Of course, still, I didn’t want to lose my finger unless absolutely necessary.
They’d said to come “sooner, vs later”, and I went right away. In September ‘18, with the new diagnosis of chondrosarcoma, I had the amputation, once it was verified that it hadn’t yet metastized. Seemingly, metastasis for this kind of tumor is just as rare as it’s conversion, and now, instead of periodic hand tumor following, I’m doing periodic lung CT scan following, as I had some lung nodules worthy of following (discovered earlier, but mostly disregarded), which now needed closer following. Metastasis for this tumor, generally, is to the lung.
However, after the December and March scans were just fine, the July scan showed two nodules had doubled in size which, thankfully, upon repeat scans in October turned out to be a false alarm. So, we’ve just moved from three month scans to six months. But I’m well aware from all the research that these extremely slow growing lo-grade (grade I) tumors can and do seem to become more active in one’s 7th or 8th decade. I’m 71...
Having read in the research about how there had been conversions to some folks, like me, I didn’t know if I’d find anyone in this forum having had the same experience.
Thanks, again, for listening and responding,
Linda
Linda @ilovedaisies, I'm so glad that you found your older posting here on Connect and that you posted this extensive update. This will help future members who come looking for information about enchondroma. You really had to advocate for yourself, and with good outcome!
I have chondrosarcoma. I just had my fifth surgery on the 6th. My first surgery in 2012 they removed a 4-1/2 lb tumor from my lung. Two years ago they removed my right lung. I now have seven tumors in my left lung. I won’t undergo surgery on that until it is absolutely necessary as I am kinda addicted to breathing😂 Chondrosarcoma is extremely rare. My do tor is on two Tumor Boards and they are at a loss on treatment. Basically, there is no treatment. Knowing that in a few years I will either have a diminished life or lose it, I keep a positive attitude. I enjoy every day that I have. I refuse to stress over what cannot be changed. Life is a gift, and God has a timeline for all of us. Enjoy your life. Be sure your doctor networks with other doctors. God bless
Just a simple question: Does anyone that has been diagnosed with Chondrosarcoma, remember of very early on symptoms, as you think back on it? Like back pain without any breathing issues (mid to lower back)? Unexplained weakness when get the very sharp pain?
Thanks! Roger
Just a simple question: Does anyone that has been diagnosed with Chondrosarcoma, remember of very early on symptoms, as you think back on it? Like back pain without any breathing issues (mid to lower back)? Unexplained weakness when get the very sharp pain?
Thanks! Roger
No. I am not even suggesting I have Chondrosarcoma.
Other than unexplained back pain in the area I read about (real severe at times), that come and goes, I am just looking for what others remembered early on before actually being diagnosed. I think if folks would keep notes of odd pain and etc, it might help doctors close in on the problem a bit sooner, providing the insurance companies let the doc's take the time and they want to do so, look at those notes.
The doctors think I have some sort of inflammatory arthritis (neck and parts of spine). I am just trying to help myself figure out other possible causes (if there are any), that are so far, only somewhat unexplainable.
I have chondrosarcoma. I just had my fifth surgery on the 6th. My first surgery in 2012 they removed a 4-1/2 lb tumor from my lung. Two years ago they removed my right lung. I now have seven tumors in my left lung. I won’t undergo surgery on that until it is absolutely necessary as I am kinda addicted to breathing😂 Chondrosarcoma is extremely rare. My do tor is on two Tumor Boards and they are at a loss on treatment. Basically, there is no treatment. Knowing that in a few years I will either have a diminished life or lose it, I keep a positive attitude. I enjoy every day that I have. I refuse to stress over what cannot be changed. Life is a gift, and God has a timeline for all of us. Enjoy your life. Be sure your doctor networks with other doctors. God bless
I am recently (March 2024) diagnosed with chondrosarcoma on my left lower pelvis. I had an MRI back in 2021 showing a lesion at the same spot, but was considered benign.
There were two times (in 3 years) that I thought I pulled my muscle at the back that it hurt when I walked. But it did not catch my attention. I had some sleep, and the next day I woke up, I was fine. So I never really looked into it, until this time, I thought I hurt my back again because we were moving. I went to the orthopedic for x-ray, and found out that it had became malignant.
I’m meeting with doctors at Mayo to discuss a plan for surgery. I’m quite concerned about my ability to walk after the surgery.
It’s difficult to find any type of information about chondrosarcoma online, and it’s hard to imagine what type of after care I will need.
I am recently (March 2024) diagnosed with chondrosarcoma on my left lower pelvis. I had an MRI back in 2021 showing a lesion at the same spot, but was considered benign.
There were two times (in 3 years) that I thought I pulled my muscle at the back that it hurt when I walked. But it did not catch my attention. I had some sleep, and the next day I woke up, I was fine. So I never really looked into it, until this time, I thought I hurt my back again because we were moving. I went to the orthopedic for x-ray, and found out that it had became malignant.
I’m meeting with doctors at Mayo to discuss a plan for surgery. I’m quite concerned about my ability to walk after the surgery.
It’s difficult to find any type of information about chondrosarcoma online, and it’s hard to imagine what type of after care I will need.
Hi @snowpea (love the username, by the way), I can imagine you're worried about surgery and how it might affect your mobility given it is in the lower pelvis. I'm tagging fellow members like @skullbasecancer4@kathleenkin@ilovedaisies@jinna78@ronib@mickeyambrose49@acherf23hk@kyp1255 who also have experience with chondrosarcoma (not necessarily of the pelvis). They can share more about their experiences.
What did you learn about surgery and care you may need for recovery after speaking with Mayo doctors?
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Hello @ilovedaisies
I appreciate your posting this interesting question regarding enchondroma becoming malignant. I did a little research on Google and found one reference to your question from Cleveland Clinic. Here is the link, https://consultqd.clevelandclinic.org/fortunately-enchondroma-lesions-are-rarely-malignant/ Please click on the link and read the information.
While the article appears to indicate that it this type of tumor does not usually become malignant that it should be watched carefully and follow up is important.
Is this type of tumor something you have been diagnosed with or are you asking for a family member or friend?
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Helpful -
Hug
1 ReactionHi, Teresa,
I happened to be back at Connect, hoping to find an answer for what I think to be an IT band syndrome following knee replacement surgery. However, trying to join, I found I was already a member! It was so very good to see your reply to my post. Thank you. Somehow, I didn’t get email notification, so I’d no idea you’d written back after I’d written.
To respond to your question, it’s about me. I was first diagnosed with “enchondroma vs. chondrosarcoma” of my L pinkie (the largest incidence happen in the fifth finger) in ‘94. Sent to the Mayo Clinic, following surgery in SD, the tumor was fully removed and repacked with donor bone. At the time, while having suspicious findings, it was decided to be an enchondroma and to follow closely. With monthly, yearly, and finally a five year follow up, it’d reoccurred. In ‘09, I had my second surgery.
This time, then in Maine, Mayo, unfortunately, had been left out of the consult, and I later learned that the tumor wasn’t fully removed, according to medical notes. Then, too, surgery at the same time on the knuckle tendon I’m not sure was a good thing. Johns Hopkins biopsy, then, felt there were still more things to watch: this time it’d had a ‘permeative pattern’ which I’d understood from reading studies of it’s rarity meant not good findings. (The original SD surgeon, who’d suspected a chondrosarcoma and sent me to Mayo for follow-up surgery — my hand was simply wrapped — told me I’d have to watch this lifelong; that it could kill me. That’s when I began to collect research studies, and had learned of recurrences, symptoms and even some deadly outcomes.)
So, when I began experience pain in my pinkie in ‘18 — which I knew to be another troubling sign, as was a third recurrence — I insisted on an MRI which now showed three nodules, vs. only the one. When the orthopedist told me it was all the same enchondroma and not to be concerned, I knew he was wrong, and sought a local second opinion. And when that second surgeon said he’d not seen anything like it before — and that I knew more about it than he did — and that I should simply amputate, I reached out, again, to Mayo. Of course, still, I didn’t want to lose my finger unless absolutely necessary.
They’d said to come “sooner, vs later”, and I went right away. In September ‘18, with the new diagnosis of chondrosarcoma, I had the amputation, once it was verified that it hadn’t yet metastized. Seemingly, metastasis for this kind of tumor is just as rare as it’s conversion, and now, instead of periodic hand tumor following, I’m doing periodic lung CT scan following, as I had some lung nodules worthy of following (discovered earlier, but mostly disregarded), which now needed closer following. Metastasis for this tumor, generally, is to the lung.
However, after the December and March scans were just fine, the July scan showed two nodules had doubled in size which, thankfully, upon repeat scans in October turned out to be a false alarm. So, we’ve just moved from three month scans to six months. But I’m well aware from all the research that these extremely slow growing lo-grade (grade I) tumors can and do seem to become more active in one’s 7th or 8th decade. I’m 71...
Having read in the research about how there had been conversions to some folks, like me, I didn’t know if I’d find anyone in this forum having had the same experience.
Thanks, again, for listening and responding,
Linda
-
Like -
Helpful -
Hug
2 ReactionsLinda @ilovedaisies, I'm so glad that you found your older posting here on Connect and that you posted this extensive update. This will help future members who come looking for information about enchondroma. You really had to advocate for yourself, and with good outcome!
I have chondrosarcoma. I just had my fifth surgery on the 6th. My first surgery in 2012 they removed a 4-1/2 lb tumor from my lung. Two years ago they removed my right lung. I now have seven tumors in my left lung. I won’t undergo surgery on that until it is absolutely necessary as I am kinda addicted to breathing😂 Chondrosarcoma is extremely rare. My do tor is on two Tumor Boards and they are at a loss on treatment. Basically, there is no treatment. Knowing that in a few years I will either have a diminished life or lose it, I keep a positive attitude. I enjoy every day that I have. I refuse to stress over what cannot be changed. Life is a gift, and God has a timeline for all of us. Enjoy your life. Be sure your doctor networks with other doctors. God bless
-
Like -
Helpful -
Hug
6 ReactionsJust a simple question: Does anyone that has been diagnosed with Chondrosarcoma, remember of very early on symptoms, as you think back on it? Like back pain without any breathing issues (mid to lower back)? Unexplained weakness when get the very sharp pain?
Thanks! Roger
Hi Roger, are these symptoms you remember experiencing?
No. I am not even suggesting I have Chondrosarcoma.
Other than unexplained back pain in the area I read about (real severe at times), that come and goes, I am just looking for what others remembered early on before actually being diagnosed. I think if folks would keep notes of odd pain and etc, it might help doctors close in on the problem a bit sooner, providing the insurance companies let the doc's take the time and they want to do so, look at those notes.
The doctors think I have some sort of inflammatory arthritis (neck and parts of spine). I am just trying to help myself figure out other possible causes (if there are any), that are so far, only somewhat unexplainable.
Hi. I know this is an old post . I hope
You are doing ok .🙏🙏🙏🙏
Hi!
I am recently (March 2024) diagnosed with chondrosarcoma on my left lower pelvis. I had an MRI back in 2021 showing a lesion at the same spot, but was considered benign.
There were two times (in 3 years) that I thought I pulled my muscle at the back that it hurt when I walked. But it did not catch my attention. I had some sleep, and the next day I woke up, I was fine. So I never really looked into it, until this time, I thought I hurt my back again because we were moving. I went to the orthopedic for x-ray, and found out that it had became malignant.
I’m meeting with doctors at Mayo to discuss a plan for surgery. I’m quite concerned about my ability to walk after the surgery.
It’s difficult to find any type of information about chondrosarcoma online, and it’s hard to imagine what type of after care I will need.
I’m grateful for any sharing posted here. 🌷
-
Like -
Helpful -
Hug
1 ReactionHi @snowpea (love the username, by the way), I can imagine you're worried about surgery and how it might affect your mobility given it is in the lower pelvis. I'm tagging fellow members like @skullbasecancer4 @kathleenkin @ilovedaisies @jinna78 @ronib @mickeyambrose49 @acherf23hk @kyp1255 who also have experience with chondrosarcoma (not necessarily of the pelvis). They can share more about their experiences.
What did you learn about surgery and care you may need for recovery after speaking with Mayo doctors?