Beginning the Chondrosarcoma Journey

Beginning the Chondrosarcoma Journey

Friday

Who created this site?

Who is Elizabeth Munroz?

What does she have to do with this site, and Chondrosarcoma?


 

Raised in Niagara Falls, NY, Elizabeth presently lives in Watsonville, California. Born with Hereditary Multiple Exostoses, one of the benign bone tumors in her pelvis mutated into Chondrosarcoma. She had seven recurrences from 1967 to 1980. With such long term survival, she wants very much to encourage others with the diagnosis to have hope, and get help.

Elizabeth is the Founder and Administrator of the Chondrosarcoma Support Group.

You may learn more about Elizabeth's Chondrosarcoma Journey at the following links.

Elizabeth's Sarcoma Blog

Elizabeth's story on the Adult Bone Cancer site.

 
Elizabeth's childhood story of Multiple Hereditary Exostoses (suitable for children)


Elizabeth's article written for Sarcoma Alliance "Your New Normal"  about how life is after cancer.

Elizabeth's story on Sarcoma Alliance 

About Elizabeth written by Mimi Olsson


Personal Statement:

All Chondrosarcomas are not the same. (Just like heart attacks, there are different kinds and different methods of effective treatment). First, there is the differences of grades, then there is the type, then the size of the tumor, then the location in the body, and age/condition of patient. All these things have to be taken into consideration. So, for example, if there is a healthy young male with a large grade 3 dedifferentiated chondrosarcoma in the pelvis, he would receive different treatment than a retired lady with a small grade 1 in forearm. Both would probably have surgery. But, the first one would be necessarily much more radical.

First and foremost, total surgical ablation, is the ideal treatment to begin with for most chondrosarcomas. (some surrounding tissue that is not chondrosarcoma must be removed with the original tumor in order to be sure they "got it all") However, if tumor is not easy to cut out, such as those located within the skull near the eye, or at the base of the ribcage in the spine, for example, very highly talented doctors who have experience treating these type of cases must be involved in the patient's care. In all cases, post treatment, it is watched very carefully to be sure that recurrence does not happen, and if it does, immediate treatment must be begun.

Recurrence seems to happen for varying reasons: If the tumor was not cut out completely with surrounding unaffected tissue. And this is not entirely avoidable. How can one tell if there is a molecular piece of CS still inside the body if one has removed everything possible that one sees with the naked eye, and verified by scans? If the tumor was attached to or growing into other organs, sometimes something can be left behind. It comes down to doing radical amputation or trying limb salvage in the hopes that there is no residual tumor. If the tumor was located in a part of the body which is difficult to "clean out" If the tumor was particularly large Also, the higher the grade, the more possibility of a recurrence.

When biopsy is done, that is when it is determined the type of and grade of chondrosarcoma. Patients have the legal right to be fully informed regarding their condition. Get a copy of your biopsy report as well as the post-surgical pathology report, and then you can know for sure what yours is. The higher the grade, the more likely that the cellular matter can develop more than a cartilaginous (chondrosarcoma) tumor and begin to show aspects resembling bone, and to behave more like another sarcoma. If this is the case, then sometimes chemo or radiation are considered useful.

Also, regarding Clinical Trials, which are not the usual standard treatment, the FDA requires that techniques and treatments used in clinical trials be tested for years, first on the molecular level, then on the veterinary level. Then, finally, it gets to be tried out on human subjects who are willing to take part in the research protocol being offered, with carefully qualified physicians who have signed up to administer these treatments under very strict scientific requirements.

In the past, it was taught that surgery was the "only" method to use with chondrosarcoma. However, improvements in the methods used in chemo and radiation (and other treatments) are now showing some more possibilities for soft tissue cancers, such as some forms of Chondrosarcoma.

It is important for anyone diagnosed with chondrosarcoma to be seeing a doctor who is very qualified to treat it. Since there are approximately 200 chondrosarcomas diagnosed per year, in the US (for example) the most qualified doctor to see would be a Musculoskeletal Tumor Specialist or Orthopedic Oncologist at the nearest possible University Medical Center. If the chondrosarcoma is located in the head or chest, then an expert neurosurgeon or thoracic surgeon who has worked with chondrosarcoma patients in the past would be important to be referred to! Deciding on a doctor because it is a matter of convenience is not the best way to get expert care for Chondrosarcoma. One needs the best possible care to spare one’s life regardless of the inconvenience to get treatment. Would you take your BMW (if you had one) to the corner gas station for a major repair? Would you take your baby to the local drugstore for suggestions for treatment if the child needed expert care? By the same token, take your precious body to a specialist who has experience with chondrosarcoma. And, if necessary, get a second opinion!


Elizabeth's 2004 interview from the Livestrong site.






If I can help further let me know by leaving a comment. It will remain private unless I approve it to be shown. If you leave personal contact information in the comment, I will not make it public.

Join the Facebook Chondrosarcoma Support Group Community where you can information and answers from many others facing the same issues.
https://www.facebook.com/groups/Chondrosarcoma.Support/ 

If either of those methods wont work for you, call my home phone only between the hours of 12 noon and 9pm Pacific Standard Time. Please respect the times or your call will be ignored.
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27 comments:

Anonymous said...

Thank you so much for creating this webswite. i live in Buffalo NY ande tomorrow my Dad will have surgery to remove a tumor located in his upper palate. The CT scan showed a 3cm x 4cm tumor attached to his top palate destroying his nasal cavity and it is suspected that it might be chondrosarcoma. A biopsy will be done when the tumor is removed. I have been a nurse for many years but had never heard of this type of cancer until the day I read the results of my fathers CT scan. Thank you for your website and God Bless You on your continued journey to educate

Elizabeth Munroz said...

Thank you for commenting. I'm grateful to learn that the site is useful. I'm so sorry to learn of your father's diagnosis and am aware of the type of surgery he is having. There are several members of the chondrosarcoma support group with similar issues to your Dads. Please feel free to join the group yourself to gain further personal information from others going through the same thing. Perhaps when your Dad is more fully recovered he might find it helpful too.

www.chondrosarcoma-support.org

jennt said...

I really appreciate you for putting up this site, it has been very insightful and i'm glad to have found it :)
I'm currently diagnosed with a tumour in my skull base, the neurosurgeon suspects it to be chondrosarcoma, but there is no way of being 100% sure unless they get a biopsy, however seeing that i'm mildly affected by it (double vision, and it's also pressing on the 3 rd cranial nerve of my right eye..., but it's more blurry) he suggests we monitor the tumour and see if it grows or if the symptoms get worse... then we will need to do surgery. I will have my next MRI on aug 7th, 2011. it's weird to say, but i'm looking forward to it, i want to know what the tumour's up to, it has been about 3 months since i have been diagnosed. when i read in your blog that people with chondrosarcoma can be deceivingly looking well, i laughed, but it has been my case so far (aside from my right eye vision and droopy eyelid)

once again, just wanted to say thanks for putting up this site as well as the support group forum :)

Elizabeth Munroz said...

If you join the Chondrosarcoma Support group, you will find other skull base chondrosarcoma patients and can read through their experiences and ask question. Whether it is Chondrosarcoma or Chordoma, it would be very important to get an actually diagnosis. These are two of the best qualified (in my personal opinion) in your area
Fred Gentili, MD, MSC, FRCSC, FACS
Skull Base Neurosurgeon
Deputy Chief, Department of Neurosurgery
Director, University of Toronto Skull Base Centre
University of Toronto

Toronto, Ontario
Canada
Phone: 416-603-5250
Fax: 416-603-5298


Michael Cusimano MD, MHPE, FRCS, DABNS, PhD, FACS
Skull Base Neurosurgeon
Professor, Department of Neurosurgery
St. Michael's Hospital, University of Toronto
1005-2 Queen Street East
Toronto, ON M5G 3C7
Canada
Phone: 416-864-6048

holbertclan said...

AMAZING
You are ABSOLUTELY AMAZING!!!

thanks for the inspiration you have just given me, I will sleep well tonight! God Bless you!!

Elizabeth Munroz said...

Thank you kindly!

Anonymous said...

Thank you so much for creating this website. My Mother died from this 24 years ago. She was diagnosed when I was a small child in the early 70's. Hers was in the hip area and we were told it attacked the flat bones of the body. She lived with it for 18 years! After all this time I still have so many unanswed questions. She had hundreds of surgeries. Went to the Mayo clinic multiple times and was in a full body cast once for 6 months! They didn't seem to know what they were doing back then and she was in a lot of pain. My question to you is; what are the chances of this being passed on? My sister has bone spurs and I have had melanoma(early stages) and cured and I worry for the future. My Mom was only 23 years old when she was diagnosed. I wonder if I could still get mer medical records after all this time? I have so many questions now that I am old enough to understand this. She was such a gift as a Mother and a person. We lived a lifetime in the time we had.

.

Elizabeth Munroz said...

If you would like to see old medical records, the time to ask for them is now. Start by calling the medical records department of the hospital where she was last treated, as well as the doctor's office. They may not have the records from the 1970's but they may have some from her last years.

Chondrosarcoma is not inheritable. You do not pass it on to your offspring. You mention your sister has bone spurs. I wonder if they might be the benign bone tumors that can be inherited. That is what I have, as well as other family members. A person with Multiple Hereditary Exostoses (osteo chondromas) will have a higher chance of getting chondrosarcoma than the rest of the population. A person who does not have this condition but is in a family of others who have it will have the same chance of getting chondrosarcoma as the rest of humanity. Remember, it is very rare. Only about 200 cases per year are diagnosed in the U.S.

Since your Mother went to the Mayo Clinic, she was in the right place at the right time, as it is one of the top medical facilities for chondrosarcoma care. In the past she would not have had such good chances for survival. Though she lived through many years of surgeries and suffering, she had the chance through those 18 years to become who she was. I was going through pelvic recurrences during that same period of time. It is bittersweet to know I am still here and she is not. I'm sorry that she is no longer with you.

I hope my site has answered some of your questions. If I can help further let me know at: chondrosarcoma underscore care at yahoo dot com

Anonymous said...

I was diagnosised with a chondrosarcoma of the left temporal bone in 1992. I went through two surgeries to try and have it removed. In 1995 we discovered that it had returned. I was sent to Mass General in Boston for a special kind of radiation therapy. I have been in remission for 17 years. The tumor is still there but is not growing. I still suffer from alot of the symptoms that the tumor causes but I am alive.
Sandy

Elizabeth Munroz said...

Hi Sandy,
I am delighted to know you are a long term survivor of Chondrosarcoma!!! Sad to know you still have some problems.

Proton Beam Radiation is very useful for skull chondrosarcoma. I'm glad you had it.

Anonymous said...

I wish I had found this last year! Last April (2011) I had surgery to remove an 8 CM tumor from my ribs. I also lost 2 ribs in the process. It was Chondrosarcoma. I'm still going through all the regular scans, appointments, etc.

To say it was scary is an understatement. My father died from complications due to cancer only a year before I was diagnosed.

My prognosis is good and I'm slowly getting back to normal. If I could ever get rid of all the side effects, I think I would be back to normal!

Thank you for the wonderful information.

Elizabeth Munroz said...

I'm sorry you didn't find the site before you had surgery. I know that CS of ribs can be a very rough surgery and the long term results challenging to adjust to. Have you considered joining the support group? There are others who have dealt with rib chondrosarcoma. You could share with them your experiences. It would be beneficial, I think. www.chondrosarcoma-support.org

Anonymous said...

Hi mrs elizabeth my name is leshell greene n I have really enjoyed reading your profiles . My mother was diagnosed with chondrosarcoma of the chedst in 2009. She had four rib her chest bone collar bone and half of her lung removed from this disease and after surgery whn the doctor came to consult with us he told us he got it all we ask if she would need any treatments to pervent it from coming back he said no treatment was need. Well eight months later the tumor came back very agressive. There was no bone specialist called or anthing they basically used her as a ginnie pig. They gave her six month to live an said there was nothing else they could do. Well after a year an a have later after they told her six months they decided to try radiation. And it started to work after 15 treatments once she had reached stage four of the cancer she past away 3 weeks after start of the traetment on jan. 25 2012. I would like to knw if there was sumthing else that could've of been done in her case or what can I do can I retrieve her medical record I would really like to hear from you I'm leshell greene from ridgeway sc 803 608 4816 thank an may u continue to be blessed

Elizabeth Munroz said...

Hi Leshell. I'm sorry to learn of your mother's diagnosis of chondrosarcoma and all the difficulties she faced. From what you described it sounds like she had a very large tumor, and an immense amount of surgery. When a surgeon says they got it all, they mean they got every piece or part of tumor that they can see. And just to make sure they have to cut out some area nearby the tumor too, including bone it might be growing from. There is no way to determine if there is still one little tiny chondrosarcoma cell still floating around inside that might grow back again into another tumor. As far as I know, there is no way to prevent a recurrence. Radiation and chemo are not useful in chondrosarcoma, so that is why they are not used. When a chondrosarcoma grows back more aggressively sometimes the cells change so much that occasionally doctors might try radiation to help it shrink down a little bit. But, it will not kill off chondrosarcoma. Sometimes, also, radiation is used to help control the patient's pain. When a doctor gives a patient six months to live or whatever number, they know they can't predict to the exact time. Some people are stronger and some are not. So, it is an estimate. If a patient is expected to pass away and Hospice care is needed then the doctor needs to say they have six months to live in order to qualify for the care. That is the way I understand things. I am not a doctor or nurse, but just a patient. I cannot decide what else could have been done. I think doctors cannot always save chondrosarcoma patients when the tumor is very, very large and especially if the lung is involved. It is my understanding that in order to get copies of medical records, call the hospital where she was treated and ask to speak to the medical records department, explain your mother has passed away and you would like copies of her records. They might ask for a copy of the death certificate and ask you for proof that you are related.

Anonymous said...

My husband was diagnosed with chondrosarcoma in his pelvis in May. It is very large - 16cm. The pathology report came back as grade 1 though. We live in an area that has proton therapy centers. My husband decided to try this type of treatment because the surgery was so radical. He is currently going through the treatments. Have you known of anyone else who has used proton therapy to treat chondrosarcoma? Also are there others who have survived this cancer in the pelvis and what is their quality of life? Thank you.

Elizabeth Munroz said...

I had a large chondrosarcoma grade II in my pelvis. I had radical surgery. I didn't have radiation. I still can walk quite well. Though long term pain and stability are issues I continue to face these many years later. I know of two people who had Proton Beam Radiation to the pelvis. They still had surgery to remove the tumor. Both had some long term bowel problems even though a "balloon" was put into the pelvic cavity to displace the bowels and other internal organs. There are many who survive chondrosarcoma in the pelvis, including those with complete hemipelvectomies. Since it is necessary to remove the whole tumor completely, sometimes this results in radical surgery. But, that might be considered to be a desired quality of life above and beyond metastasis. I wish you and your husband well. May his healing be a smooth one.

Anonymous said...

Hi Elizabeth....Thank you so much for your non stop information...I was diagnosed 2 weeks ago with CS after having a tumor from my left heel removed, which came back low grade. I was 49 at the time of diagnosis. And I have two young children, ages 7 & 10 so it's been a very trying time. They will now have to do another surgery to remove the CS. I can't tell you how alone and lost I felt due to the limited info I had been able to find until now. I am seeing an orthopedic oncologist but didnt know to ask all the questions your info has raised. I live about 2 hours from the doctor and its pretty difficult to contact someone at his office so thank you again for the info...

Elizabeth Munroz said...

You can join the online support group for CS and have contact with others, too. www.chondrosarcoma-support.org

Bill said...

Elizabeth...In March 2011 I underwent 12 hours of surgery to remove a massive CS tumor in my chest wall. I had an artificial chest wall, about 6" in diameter, implanted to cover my vital organs. An 8mm nodule in my left lung was also removed. After 10 days in ICU I was released. Since then I have rehabbed nicely and exercise 2 hours daily. Last week I learned from a recent CT scan 2 small nodules were found in each lung. My specialists are tracking this and most likely I will have surgery in October to remove the nodules. Are you aware of any current patients who have CS that spread to the lungs with successful results from chemotherapy?
Thank you
Bill

Anonymous said...

Wow! Ran across this late tonight. I was diagnosed in 2008 with CS in my knee/femur. The tumor was removed and an allograph was done. Two years later I had to have a knee replacement to "straighten" my leg. To date...all clear! I do have daily pain and some swelling. I am assuming that it is nerve damage from the first operation and will be something I just need to deal with....I am very fortunate and blessed. I looked for information on CS and never really found too much..until tonight. Thank you for taking the time and effort to help so many learn about chondrosarcoma. My story.. I was chasing a puppy one Sat am., my knee started to hurt so I thought I had pulled a muscle..the pain worsened so I visited my PD...Two days later he arranged a CAT scan...and it was wild for the next few months. I am grateful to the wonderful docs both in Richmond, VA and Philadelphia who took such great care of me...and my family who were so supportive during this stressful time!
Thanks again for creating this site!

Elizabeth Munroz said...

You are most welcome. It does my heart good to know that someone has benefited from my site. I wish I had the opportunity to see such a thing when I was diagnosed so many years ago. But, at least I survived to tell the story and I like to think it brings some hope to those newly diagnosed and facing the unknown. My very best wishes to you!

Anonymous said...

Thank you for this wonderful site!!! So easy to understand! I was diagnosed with grade 2 chondrosarcoma in mouth/teeth area last week and have so many questions. The specialist wants to do a partial maxillecotomy within the next 3-5 weeks and I'm trying to make sure I get all of my questions answered before then. He is in the process of getting a second pathology report to confirm the disagnosis.

Do you know why chondrosarcoma has to be operated on right away? I've done a CT scan and it does not appear to have matastisized at this point and is still localied in the upper part of the mouth. Since the original cyst was removed by the first oral surgeon (before we knew it was cancer), I relaize the oral surgeon did not get clear margins around the cyst, but I wonder if most of the cyst was removed and if we need to act right away with a partial maxillectomoy or if we can wait and see if it starts to grow again... I'm sure I'm just grasping at straws, but I thought I would ask the question.

You can contact me at kellymarinmartin@gmail.com. Thanks for your help!

Anonymous said...

Elizabeth...thank you for your this it has been helpful,,,sorry I called at the wrong time I forgot there are 2 time zones going west...haven't talk to you yet I will keep trying from the 402 area code...I have read that many have walk again after having a hemipelvictomy...mine was a internal amputation of the pelvic,hip,and top of the femur bones...without any replacement parts...can a person walk again after that...its been 2 years and I don't ever see it happening..

Anonymous said...

It's so good to know there are other long term survival condrosarcoma patients. I have mesenchimal chondrosarcoma for more than 13 years, had 5 neurosurgeries so far and radiotherapy. Now I am stable.

Elizabeth Munroz said...

I'm happy to know you've survived 13 years. You are certainly welcome to join the facebook chondrosarcoma support group.

Tam Oosterlaw said...

My daughter who is 25 is having he 3rd reoccurance of chondrosarcoma of the lower left ankle/leg. The 1st time she was 19 they cleaned it out and replaced with cadaver..no cryosurgery spray was given...it returned for a 2nd time and it again was cleaned out and replaced with cement...well now a 3rd time and she is 25..she has med-i-cal with Kaiser and I am not a fan. I want to get a 2nd opinion of of Kaiser using cal-optima (state coverage). Any info how how to accomplish this would be helpful. Also any hospitals or doctors with high success rate can anyone recommend? My daughter already suffers from depression and just got a diagnosis of aspergers yesterday..she feels life is over...and she needs to be a fighter..any help with an accredited hospital and doctor would be a God send. Thanks..one worried mom and very sad daughter here

Elizabeth Munroz said...

Tam, what type and grade is the chondrosarcoma? I don't know anything about insurance issues so I can't help there. I notice you are from Orange county CA. There are several very good orthopedic oncologists in Southern California. Regardless of the services you are receiving at Kaiser, if your daughter is being treated by an orthopedic oncologist, that is the right kind of doctor to be treating her.