Beginning the Chondrosarcoma Journey

Beginning the Chondrosarcoma Journey

Sunday

WHAT IS TUMOR STAGING FOR CHONDROSARCOMA?

Once chondrosarcoma is found, biopsy tests will be done to find out if the cancer cells have spread to other parts of the body. This is called staging. The doctor needs to know the stage of the cancer in order to plan treatment.



There are several staging systems for chondrosarcoma, but no single staging system applies to all types of this cancer. The treatment options in this summary are based on whether the cancer has spread or the amount of tumor left after surgery. The general non specific stages of chondrosarcoma are non-metastatic, metastatic, and recurrent.
 
Treatment by stage
If the Chondrosarcoma is stage I or II the treatment option may simply be surgery to remove all of the cancer. Patients may undergo close monitoring with CT scans on a regular basis to be sure the tumor does not place any vital organs in danger, or if complete removal of the tumor is not possible, or if the tumor comes back following surgery. Sometimes a second operation must be done to be sure that all the tumor has been removed, or if the tumor comes back following treatment. No recurrence of tumor after five years is considered to be cured. 


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36 comments:

Anonymous said...

THIS WEBSITE HAS GIVEN ME SOME GREAT INSITE INTO THIS TYPE OF CANCER!

Elizabeth Munroz said...

I'm glad you have found it useful!

Anonymous said...

what if it is stage 3 and you have had surgery to amputate leg,pelvis & hip to remove large tumor?

Elizabeth Munroz said...

If the tumor is biopsied and identified as stage 3 and it has been thoroughly removed by the hemipelvectomy, then regular scans, usually every 3 or 4 months are done to verify no further recurrences or metastasis. After a year, then often the scans will be schedule to about every six months. With no evidence of recurrence then scans might be moved to once a year. I hope that the healing process is far behind now and getting back to living life to it's best new potential is the present condition. I hope this helps answer the question.

Nathan said...

Elizabeth,

I really admire what you have done with this site. However, your information regarding when you are considered "cured" is not accurate according to what my doctors at Johns Hopkins and Walter Reed have told me. I had a stage 2 chondrosarcoma removed from my femur in 2003. My doctor says that since it is a slow growing tumor, it often comes back later than other tumors. If you have an aggressive tumor and you reach 5 years remission, you might be out of the woods at that point, but not so with a slower growing cancer. I have to get yearly CTs of the chest until I reach 12 years remission, and then every 2 years until I hit 20 years remission. Not until that point will I be considered cured (much to my chagrin). I believe 5 years remission is a general bench mark for many cancers, but not so in all cases. I have actually heard that some doctors stop tracking at 5 years only because of insurance reasons, not because you're statistically in the clear at that point.

Anyway, thanks for putting together this website. I too have never met another person with chondrosarcoma, so it's great that we can use the Internet to collaborate on our shared rare condition.

All the best,

Nathan

Elizabeth Munroz said...

Hi Nathan,

Thank you for pointing that out. I should have said "Some" consider five years without recurrence as cured. Not all hospitals and doctors agree on this point. Some say eight years, also.

I object to this also. I had yearly recurrences for a while, then one recurrence after four years, then one recurrence after another four years. Then eleven years later I had mets to the lung, which have remained stable for a long time. If you want to know the whole story on that you can find it in the Chondrosarcoma Support Group,

Thanks for bringing this to my attention. I will need to gather more information.

BJ said...

My brother in Arkansas has been diagnosed with this in his femur. The only hospital he has been to is the VA there in Little Rock.
He is reluctant to look at other options - 2nd opinion type options.
Can you provide a resource of encouragement to review options?
They want to replace his hip joint, the entire femur, and the knee joint. Blessings from BJ in Memphis

Elizabeth Munroz said...

This fellow is an orthopedic oncologist in Memphis.
http://www.orthomemphis.com/services/musculoskeletal-oncology

Corinne said...

Thank you for all these informations.

I don't know yet if the tumor is malignant or not, but it's big (6 cm). I have to see my doctor and I think she will tell me the only way to know for sure is a biopsy, and I am really scared about that.
Since I have known that, I have not been able to sleep more than 2 hours per night and I am really exhausted.
It seems that I am in the middle of a nightmare.
Thank you for your site, thank you so much.

Elizabeth Munroz said...

Corrine,
Please try to get some rest. It is very important that your brain chemistry gets rested. Without it, we add more stress hormones to our already stressed out body. Whether you have Chondrosarcoma or not, it sounds like surgery might be necessary anyways. In either case, having surgery works out much better with a less stressed body. I hope you can find a way to help yourself with this issue. Maybe it would help if you wrote down a list of all the things you might be concerned about or having fear about. I did that when I was first going through diagnosis. I got to the most obvious... What if I die? and realized it would be better if I prepared for it, "just in case". Then there was fear about pain and suffering. I don't know if you have had a baby, but if so you might recall how everyone had their own birthing stories, some scarey and some not. One thing I learned is that things happen to us that we cant always control. But, it is the way we handle it that makes it easier on us. I'm not suggesting to put on a fake smile and pretend everything is fine. But, you can make a decision every minute... How can I handle this so I feel better about it? I think you will find the answers you need to get through whatever comes up. Just remember you are not alone in this. There are others going through the same thing and are healing, recovering and getting back to their lives.

Lisa in Washington said...

Thank you for this website. I have found it very interesting. Although I have met a few others with this type of cancer, I have never met anyone else with it in their scapula. I was diagnosed 12 years ago with Condrosarcoma in my right scapula. I've just completed surgery number 6. My ortho oncologist now wants to talk about the possibility of radiation. What type of questions should I be asking? The thought of radiation makes me very concerned and I really want to be educated before making this type of decision. Thank you.

Lisa in Washington

rahul said...

My father realised a few months ago that he had a small golf ball sized lump in his right thigh, he got some MRI scans done which showed that there was a tumour which was benign, however still following the word of a close surgeon he got the same removed from his leg.
When we sent the tumour for excisional biopsy it said that it is very close to extra skeletal myxoid chondrosarcoma.
Now the surgeon has got in touch with a good oncologist who has suggested some PET scans and CT scans. i am hoping for the best now and i believe it will all be good. but finding out someone like you who has provided such good information and that too in such detail is amazing. thanks a lot and well done for your effort.

Elizabeth Munroz said...

It sounds like it might have been caught in time. It would be what most consider normal to have scans every three or four months after surgery to watch for recurrence. Then after a year scans are usually done about every six months. Then after that, yearly. Some will do it for five years, some will continue until the eighth year. Good luck and good health to you and your father!

rahul said...

aww thank you so much for the assuring words, i want him to be fine.

Elizabeth Munroz said...

I hope he will be fine, too!

Anonymous said...

I have been told I have high grade chondrosarcoma in my index finger. Found when I had a lump removed thinking it was a giant cell tumor.Pathology was twice evaluated..2nd at Sloan Kettering with the diagnosis of chondrosarcoma. Been told the best route is to have finger amputated. Scares me to no end!

Elizabeth Munroz said...

Try not to let fear get in the way of making a good plan for yourself. I'm sure the idea of a malignant high grade tumor is scary. The idea that it is not treated with chemo or radiation might seem lacking. But, please keep in mind that complete surgical removal of tumor with good margins is the treatment mode for chondrosarcoma. If this means amputation, then that is a clear indication your doctors know what they are doing. While seeking information, please keep in mind how much you are affected by "negative" information. Are you keeping a rational balance in what you are learning? Are you paying attention to all the "positive" information, too? In the meantime, get some support, either in a local cancer support group, with a counselor, or if you choose, join an online support group for sarcoma patients. This one is for chondrosarcoma: www.chondrosarcoma-support.org

Anonymous said...

Thank you for commenting. Yes, I am trying to get all the positive info I can. My husband is being such a rock for me. Nine months ago I had my thyroid removed for cancer and we thought that would be our journey. Well it continues and we will get through this too. Just lots to learn and emotions to go with each step.

carol mills said...

Hi I like your website, I didn't know so many people had Chondrosarcoma, I got it when I was 3 yrs old and I'm now 23, and i had surgery, chemo, and radiation, and it was on my spine, and it returned when I was 4 or 5 yrs old, but I've been cancer free since then, but anyways I was told that it's rare for kids to get it and survive is that true? Because I heard that there wasn't any cases of children surviving it, but that was in 1992 so I was just curious if it was true or not back then,
Carol.

Elizabeth Munroz said...

Hi Carol,
Yes, children get Mesenchymal Chondrosarcoma. It is very, very rare. It's not the kind of Chondrosarcoma that adults get, though it is not unheard of. Mesenchymal Chondrosarcoma is very aggressive. If caught in time, chemo and radiation are effective. There were few known cases back in the time period you mention. It wasn't that there weren't any. It was because it is rare and it was not common to have a complete count of how many cases existed in the world. The survival rate in the past was not good. But, with more modern treatment children have a better chance of survival. The kind of internet connection we have today helps doctors to have more information about it. There is an online support group specifically for Mesenchymal Chondrosarcoma run by a woman named Mimi Olsson. Her 5 year old granddaughter was diagnosed with it ten years ago and has survived. You can read about Carly here: http://www.childrenshospital.org/chnews/archive/12-06-02/carly.html

I think Mimi would be very interested if you made contact with her. You can find her at the Mesenchymal Chondrosarcoma Support Group here: http://health.groups.yahoo.com/group/MesenchymalChondrosarcoma/

carol mills said...

Ok thanks for the info :)

Anonymous said...

what will happen if the necrosis of the tumour starts in chondrosarcoma sternum

Elizabeth Munroz said...

I don't know. Sorry.

Anonymous said...

hi elizabeth
i want to ask you that on what basics higher and lower grading was done . i mean to say that what we call lower grade ...grade 2 is lower or higher? .....if size of tumor is 8cm then what grade it will be ....and is there possibility of cure with that much size.

Elizabeth Munroz said...

Grade 1 is the lowest grade.
Grade 2 is next.
Grade 3 and 4 are highest grades.
Grading is not based on size of tumor alone.
Grading is based upon what the cells look like under the microscope.
If there are a lot of normal cells and only a few malignant cells that is grade 1. Sometimes it is difficult to tell the difference between a benign tumor and a malignant chondrosarcoma when it is grade 1.
Grade 2 will have more malignant cells than grade 1
Grade 3 will have many many malignant cells that have many obvious changes.
Also in the grading system it is important to recognize if there is de-differentiation. That suggests a more agressive tumor.

Anonymous said...

what is the prognosis once one has lung metastasis ?

Phuong Tran said...

Thanks for the website.
My name is Tracy live in CA. My husband has been diagnosed with mesenchymal chondrosarcoma (grade 3). He is only 33 years old. He had two surgery before and going to have another one (if possible) because this time the location is on base of skull. Some doctor already refused to have him surgery . but we still trying to get another opinion. Then he will start radiation treatment. My worry is can he survive after all the treatment ? Can he live more than 5 years. We have been told this cancer it not gonna take life away, is this true

Elizabeth Munroz said...

If you go to this website you can find information on where to find help for Mesenchymal Chondrosarcoma. It is a very rare form of CS and needs a different treatment protocol. http://sarcomahelp.org/mesenchymal-chondrosarcoma.html#tpm1_2

There is also an online support group for MCS. Very important to get in touch with the woman who runs it (Mimi Olsson) as she would know EXACTLY, where you could get help from doctors who know what they can do for your husband.

Tswmom said...

My daughter was duagnosed in January 2010, at age 9, with what turned out to be chondrosarcoma in her femur at the hip. She had excision surgery in April 2010, but MRI after showed they did not get it all, we were in wsit and watch approach until october 2012 when she became symptomatic agsin and MRI dhowed growth frim 6 months prior. December 2012 she had 2nd excision surgery with goal to temove it all but post op MRI in June 2013 showed additional small spots. Good news is bone scan was clear for other areas and ct scsn of lungs was also clear. MRI today shows no sign of growth in spors. So we are on 3 month MRI cycle to watch forbfrowth or if she becomes symptomatic. Location of tor is fifficult to remove without taking too much femur and she is now only 13 and still griwing. She is grade 2 tumor. She is patient at childrens hospiral boston and for that we are greatful. She had no prior injuries or reasons given in available research to explain how dhe got this but she has it.

Elizabeth Munroz said...

I'm so sorry to learn of your daughter's diagnosis. Did she have myxoid or mesenchymal chondrosarcoma? I'm so glad to know she got her treatment at Boston's Children's Hospital. That's one of the best places she could receive treatment! I hope she continues to do well.

Tswmom said...

She has no prior myxoid or mesynchymal chondroma and no prior injury to site, no radiation, chemo, etc. they originally thought it was chondromyxoid fivroma but further testing showed this was not accurate pathology. No explanation as to how or why she has it.

Elizabeth Munroz said...

There is no known "cause" for chondrosarcoma. Sometimes there may be an underlying condition such as MHE, Ollier's or Mafucci's that might possibly contribute. But, not necessarily. It is unusual for one so young to have conventional chondrosarcoma. If you are uncomfortable about this getting a second opinion on the pathology might help clarify things.

mh said...

My husband was first diagnosed with mesenchymal chrondrosarcoma Oct of 2000. His is located in his spine. First surgeries were in Mar and April of 2001. Prognosis given at that time was 6 months with radiation treatment. Luckily was in remission until 2006, then diagnosed with malignant tumour in 1 kidney. He had kidney completely remove May 2006 no other treatment. Approximately Nov of 2009 reoccurring of spinal chrondrosarcoma. He under went surgery in Jan 2010 no other treatment. The doctor told us he was unwilling to perform another surgery if had reoccurring as would need a radical surgeon team. In May of 2011 other reoccurence of the spinal tumor. He had surgery Jun 2011 left him with paralysis of right leg. Most of 2011 he was in and out of hospital due to surgery complications. By Jun 2012 yet another reoccurence. Doc said no further treatment or surgery avail to him. Prognosis was given as terminal and placed on hospice. He is still battling now. He is completely paralyzed from hips down. Has so much pain!!! He is given narcotics and morphine for pain control which only helps about 50 per cent of the time.

Elizabeth Munroz said...

Hello MH, I'm so sorry to learn of these difficulties your husband has faced with the very rare mesenchymal form of chondrosarcoma. Does your husband have metastasis in the lungs? or elsewhere? Have you gone for a second opinion, or third, at a university medical center?

mh said...

Hi Elizabeth, unsure if cancer has metastasized as hospice does not allow any further testing or referrals. My suspicions based on amount of stomach pain, back pain, and rectal bleeding is that it has metastasized. The last surgeries were at a University hospital. Because the surgery involved fusing his spine with metal rods and pins, the surgeons advised no other surgeries were possible. The spinal sac was also replaced with some type of fabric as the tumor was wrapped into it. He also has a cage that replace a small portion of the spinal bone. He is now on 200mg of fentanyl patches, morphine, methadone, gabapentin, and ibuprofen.

Elizabeth Munroz said...

I'm so sorry to learn this. Mesenchymal type of chondrosarcoma can be so relentless. I do hope his pain can be more well managed and he can be peaceful, for his sake as well as yours. Hang in there. Hugs!