Beginning the Chondrosarcoma Journey

Beginning the Chondrosarcoma Journey

Friday

UNDERSTANDING CHONDROSARCOMA

The following questions about Chondrosarcoma are answered in language the average person can understand. Each question is a link. Click on the question to find the answer.

1) What is Chondrosarcoma?

2) What's the difference between healthy bone and Chondrosarcoma?

3) What are the risks of developing Chondrosarcoma?

4) What are the symptoms of Chondrosarcoma?

5) What locations in the body are Chondrosarcoma tumors found?

6) Why is Chondrosarcoma so rare?

7) Where is the best place to go to receive appropriate treatment?

8) What are the methods used to diagnose Chondrosarcoma?

9) What does "tumor staging" mean in Chondrosarcoma?

10) What are the different kinds of Chondrosarcoma?

11) What are the chances for recurrence, remission, cure and survival?

12) What would happen if no surgery is done to remove the Chondrosarcoma tumor?

13) Why are radiation and chemotherapy ineffective for Chondrosarcoma?

14) What are the possible long term effects of Chondrosarcoma Treatment?

15) Where can I find a support group of others diagnosed with Chondrosarcoma?

16) Are there any alternative methods of treatment known to be successful in curing chondrosarcoma?

17) Who is the long term Chondrosarcoma survivor who created this site?

18) Can I read other patient's stories here?

The information provided is from a layperson's understanding. It is important to check out the facts for yourself with your medical care team.

This site is being maintained by a patient who has survived Chondrosarcoma. I am not a physician. I have no medical professional degree. I am an average person, a patient, who has long term survival, and no recurrence of Chondrosarcoma for many years.

I have learned many things along the way about Chondrosarcoma. I am sharing here what I have learned, and providing as much appropriate information as possible to the best of my ability, and understanding in words the average person can comprehend.

It can be very confusing to research Chondrosarcoma on the internet. There are so many kinds of Sarcoma, and one can get confused sorting out the facts. Over the years, some of my doctors have taught me a great deal. I have attended college courses, including pre-med. I have learned how to do appropriate research on how to find authentic, peer reviewed scientific articles on Chondrosarcoma. I hope to save others from having to spend their lives trying to learn about Chondrosarcoma on their own.

If I can help just one person to get through their experience with Chondrosarcoma, then all my years of going through it alone, and never knowing another soul with the same diagnosis, will have been worth it.

The most valuable lesson I learned from my experiences with Chondrosarcoma? It is imperative to ask questions, get answers, then ask more questions and get more answers. Also, go for a second opinion if necessary, with those most qualified to make the diagnosis and treatment.

Doing this bothered me at first. I wasn't used to questioning doctors and insisting on answers, but it was worth it to be a little uncomfortable. After all, it was my life and my health at stake.

*Note: Chondrosarcoma in English, is pronounced ( KAHN - dro - sar - KO - ma )

8 comments:

Heritage Wood Art said...

I have been diagnosed with an enchondroma but the radiologist's report said a chondrosarcoma could not be ruled out. Accordingly I was referred to Sloan Kettering in NYC, and have my first appointment at next week. Have been spending lots of time informing myself. Just wanted to say thanks fort this blog. It is intelligent, candid, and extraordinarily helpful. I hope I can be as helpful to others as you've been to me.

Joseph

Elizabeth Munroz said...

Thank you, Joseph. I hope chondrosarcoma will not be your diagnosis, but if it is please feel free to join the chondrosarcoma support group. Good luck!

Anonymous said...

This is a great site. My wife has had severe pain in her left shoulder and arm area for that last week or two. It has been a dis-comfort for some time and has become far worse. Dr's keep brushing off as a link to her rheumatoid arthritis but she seems to feel this may be something more and even mentioned bone cancer to me yesterday ! I have blogged and come across this condition in line with her symptons and although an x-ray was clear, she is due to have an ultra sound scan in the next 10 days. I very much it is nothing untoward but knowing more about this condition and the possible successful outcome is a huge comfort.

Rgds

Alex

Elizabeth Munroz said...

Hello Alex,

I also have arthritis in my shoulder area and it always does wonder if I have a steroid injection. I was scared to have that done the first time, but was in so much pain and didn't want to take pain pills that I went for it, and have not been sorry. The procedure is a bit painful, but within three days I am without any shoulder pain like I had before.

I hope the ultrasound pinpoints exactly what is going on and your wife gets some relief. I do hope she does not have chondrosarcoma.

If for any reason there are still any doubts, perhaps a visit to an orthopedic oncologist would rule it out completely. They are the ones who are most qualified to identify and treat chondrosarcoma.

Anonymous said...

I really need some help.
My brother belongs to Kaiser, it took them two years after him complaining of pain in his upper leg he has ChondroSarcoma. He has had three surgeries, the 1st they scraped and cleaned the bone area the 2nd they removed the fimur. The cancer came back in his abdomen, that doctor cut it out but could not get it all. The cancer is back in the same leg behind the knee and I just found out it is back in his abdomen. My brother has been asking Kaiser to refer him to a Sarcoma center but they refuse. Do you know what the guidelines are for Sarcomas.
Thank You
Sharon

Elizabeth Munroz said...

Hello Sharon,
Unfortunately, it is common for people to go quite a while before getting properly diagnosed. It is no fault of the doctors. There are so many other conditions that can be considered as the problem. Chondrosarcoma is so rare that it is not always the first thing a doctor will think it is when trying to figure out why a patient has pain. I'm so sorry to learn of the recurrences. There are some doctors through Kaiser who are well qualified to treat chondrosarcoma. But, it depends on which Kaiser. At this point, I hope your brother can get to a sarcome specialist, either at Kaiser or elsewhere. I am very concerned about the recurrences!

Anonymous said...
This comment has been removed by a blog administrator.
Nikul Dadia said...

Respected Madam,
I would like to heartfelt thank you for the noble cause you are doing. People like you are the reason why this world is still a great place to live. Your inspiration to others is praiseworthy. I myself had gone through this and had referred your site before operation. I am glad to inform that after 3 months I am completely fit and healthy.

Please keep up the good work. I could also contribute my story and hope it could be helpful to someone else and might also help to reduce some of the fears and phobia associated with chondroscarcomo.

Regards,
Nikul Dadia.