We can make a difference, one person at a time.

Since only 1% of all cancers in adults are sarcomas, there is very little professional interest or research funding in creating a cure. In children it is 20%. Comparing the percentages of other "well-populated" cancers, funding for research is aimed elsewhere. So, other cancers get the opportunity to have new treatments available. Many cancers that were deadly forty years ago when I was first diagnosed are now treatable. In fact many of them have a cure. Little progress has been made in the field of sarcoma.

One may not think of Testicular Cancer as a form of Sarcoma.

Seminoma is the name.

For any man reading this, PLEASE regularly examine yourself for any signs of a lump on the testicle. We see all kinds of reminders in our daily lives for women to check themselves, but men need to be aware of their possible health issues.

If you find a testicular lump do not wait to see if it changes. Get yourself to a Urologist immediately and have an ultrasound (completely painless test). It's not time consuming. It's not invasive. If it's not Seminoma, then you have the assurance you need. You wont have that lump continually haunting you in the back of your mind. Or just trying to ignore it.

If it does turn out to be Testicular Cancer and you have caught it early, it is quite curable. Surgery and a few weeks of chemo, and that's it. You're on with your life.

Like I said, regular self-exam and a quick visit to the doctor. Don't wait, and insist on an appointment as soon as possible. Catch it early. It's curable.

If you are under age 30, this is imperative!!!

For any women who may be reading this, tell the men in your lives.

If you have read Lance Armstrong's book, "It's Not About the Bike", then you may be thinking that he had Testicular Cancer and he didn't have an easy cure. That's correct.

For those who haven't read the book, Lance said he didn't give his symptoms much thought at first. Then, he felt that other things were more important in his life, and he could get to the issue later. In the meantime it grew very large and painful before seeking help. By that time it was quite aggressive - to a stage 4, which means it had moved out of the tumor itself and spread to other parts of his body.

Lance Armstrong is a very lucky man to have survived.


A number of people have been asking for details about the 2008 Team Sarcoma Bike Tour which is part of the 2008 Team Sarcoma Initiative. You may know, it is an internationally coordinated set of events to raise awareness of sarcoma and raise funds to support sarcoma research, clinical trials, and patient and family services.

Those who have been on one of the Team Sarcoma Bike Tours can tell you what a very special week it is.

The 2008 Initiative consists of the "core" Team Sarcoma Bike Tour (which will be held in Germany and Austria biking along the Danube River from Passau, Germany to Vienna, Austria during July 12-19, 2008) and various local Team Sarcoma events that will be held worldwide during the same week.

Here is where you can learn more about the Team Sarcoma Bike Tour.

If you would like the multi-page (more detailed itinerary), please send a request to Bruce Shriver by an e-mail message to info@liddyshriversarcomainitiative.org

Each day, team members have a choice of three programs: one designed for strong cyclists, another for leisure cyclists and the third for those who would prefer to walk or hike.

More History of Sarcoma
In the 1800's, Sarcoma was a known medical entity. I have mentioned before about my curiosity in this subject, (I just find it fascinating) and recently, did a search of old newpaper archives online. The full page is digitally copied and presented for example, but totally unreadable. So excerpts of the articles were transcribed by OCR technology which produces garbled text. (Typeface fonts were hard to read back then, even to the human eye.) I have attempted to discern what I can from the following articles.

1810
March 13 - Edinburgh Advertiser
A medical book, "a handsome pocket volume", was being offered for sale. Mention is made of the Antiquarian and Chirurgical (surgical) Society, and the "Practical Directions for the Management of Cancer", with SARCOMA listed in the Index.

1829
August 08, The Sandusky Clarion, (Ohio) ,
Dr. Wilson placed notice (advertisement) encouraging others, "who may unfortunately be in need of any similar assistance", discussed his expertise in the disease designated an osteo-SARCOMA in which was an enlargement of lowerjaw bone."

1838
March 15, Alton Observer
The Degree of Doctor of Medicine was conferred upon the following individuals and a paper on Medullary Sarcoma was presented by John Evans.


Enalns AL on Blood Letting
Edwin H. Davis, on Electricity as Cause of Epidemics (as in weather electricity)
EK Dayton, on Blood letting
John Evans, on Medullary SARCOMA
Elia Garat, on Acute Gastritis
John If, the Blood
Edward Kimball, on Arachnilios" (spiders?)
Joseph Redhead, on Lesions of the Pleura
John A. Fating, Relations of the nervous and vascular systems in Intermittent Fevers

1879August 29, The Decatur Daily Review
At Carrollton, Mr. H Dowdall died under a surgical operation. For nearly a year the patient had suffered from osteo-SARCOMA, resulting from the fracture of the thigh bone. Dr. Younkin, a surgeon of St. Louis, operated upon the case. The patient bore the chloroform and operation well until he began to come out of the anaesthetic, when he immediately sank and died.

1881
November 18, Fort Wayne Daily Gazette
Osteo-SARCOMA, by Dr. Stemen, presents an interesting case which came under his practice.

1884
April 24, Indiana Weekly Progress
A post mortem examination, made on Sunday conducted by four doctors, developed the theory that the disease was SARCOMA or tumor combined with or producing softening of the brain.

1885
January 19, - New York Times

A NEW CANCER CURE: EXPERIMENTING WITH A BRAZILIAN REMEDY KNOWN AS ALVELOZ

The story of the Cundurango (Brazil) cure for Capt. John A. Duble, of the District, has been treated for a cancer of the face (Epithelioma) with an application of "alveloz," a Brazilian remedy.



May 07, - Cambridge Jeffersonian
"A cancer, of whatever kind, is always malignant. Though hard cancer, of which an epithelioma is one, is not so malignant as a soft cancer, in which the cells preponderate over the fibrous tissue. What is now called SARCOMA, which was once thought to be a cancer, is a benign tumor generally, but may be malignant. It differs from a cancer mainly in having its cells separated from other by intervening substance. In the latter the cells lie against each...."

June 10, - Newark Daily Advocate
"...patient's cheek gradually assumed a black appearance. In several places small pieces of bone could be felt where the jaw had become affected and had thrown off sharp splinters. After a careful examination the disease was diagnosed as a SARCOMA, or cancerous growth of a malignant type. Internal treatment did not check the progress of the cancer and the patient consented to risk a surgical operation, though he was told that the chances were all against him."

I received a message recently from my friend Mimi, who has appealed to the greater Sarcoma Community, (all those groups and organizations who have formed due to this rare form of Cancer). Mimi is the Moderator for the Mesenchymal Chondrosarcoma Support Group on Yahoo. She works tirelessly on behalf of her members as well as through the other groups helping to disseminate the latest of research information and connects people up with sources they didn't know were available. As a group moderator, I know what a tear in the heart it can be when one of your "own" succumbs to the disease. So I can relate to Mimi's request for taking a moment here. This is her message:

The Mesenchymal Chondrosarcoma Support Group is small. Unfortunately, the names of those who were struck down by this cancer are many. Please join
me in remembering them.

IN MEMORY
Mesenchymal Chondrosarcoma Warriors

Sylvia S
Jeremy D
Voitek
Elsie C
Xu, Yulian
Tim Hill
Wendi J
Tiffany R
Lisa W
Andrew Wreghitt
Scott Stafford

Jonathan Chelliah



Jacqui C



Mike Hauenstein







Ty Cheverier





Dr. Zheng-yu Peng







David

Kokjohn

I get frustrated where sarcomas are concerned because it seems that little progress has ensued over the generations. Though, I am sure, perhaps on the molecular level there are strides as any scientist will tell me. However, still no definitive cure in sight. Bone tumors capture most of my interest simply because I was born with a plethora of them. I have Multiple Hereditary Exostoses, otherwise known as Multiple Osteochondromas. That means I have many cartilage bone tumors all over my body. One of them mutated into a form of bone cancer called Chondrosarcoma. Since my diagnosis in 1967 I have sought answers, and have waited for science to come up with a cure. Here we are 40 years later and, well, no cure. Sometimes it seems to me that nothing is new in the world of bone cancers and sarcomas. To illustrate my point, I spent some time researching a little history of chondrosarcoma. This is some of what I gleaned from various sources:

Hippocrates had a special interest in bone tumors. One of the things he said, "What cannot be cut out, can be burned". (Hence, with tongue in cheek, I suggest the concept of RFA was born.)

1850
Dr. Langenbeck reported on a complete scapular resection for a cartilage tumor. (Guess what? We are still performing this type of surgery today.)


1867
Rudolf Virchow (considered father of modern pathology) recognizes primary bone tumors such as fibrosarcoma, myxoid sarcoma, osteosarcoma and chondrosarcoma as more rare than tumors metastasized to bone. (Yes, and they are still considered rare today. A blessing I suppose that many people do not have to suffer from them. A curse, on the other hand, because little research funding is put to finding a cure.)

1876
Dr. Hinds introduced "scraping" for palliative treatment. (What amazes me is that a big clinical trial for this sort of treatment for Chondrosarcoma has been going on for the last couple years. Did someone forget it had already been done? Yes, I am admittedly a bit cynical.)

1879
Professor of Surgery, Samuel Gross, published "Sarcoma of the long bones..." stating those which form a matrix (osteosarcoma and chondrosarcoma) metastasized to the lung, and much less commonly to the lymph nodes. Because of aggressiveness, he recommended amputation as the treatment of choice. (And amputation is still a treatment option. (Though, I must be kind, not the only method these days. But, it is still used more than I would like to see, especially where hemipelvectomies are concerned!)

1905
Dr. William B. Coley was impressed with how effective radiation was with aggressive osteosarcoma. (Yes, you guessed it, still doing this today. I so much would wish they would come up with something better after all this time. Don't you?) Coley is famous also for his fever cures cancer theory and used bacterial vaccine to create it. Fascinating, authentic article about it here.

1912
Dr. A. H. Tubby becomes aware there is a difference between primary and secondary tumors, as well as benign and malignant in relationship to exostoses and chondrosarcomas. (I kid you not. That's his name.)

1924
Dr. Joseph Bloodgood suggested curretage, phenol wash, and autograft as acceptable treatment option for Giant Cell Tumor. He also developed the Bone Tumor Registry. He also suggested the name myxoma for what was probably a myxoid chondrosarcoma. (Again, there's that curretage, though I'd rather have clear margins.)

1930
Dr. Phemister clarifies a distinction between chondrosarcoma and osteogenic sarcoma. This classification was not accepted and approved until 1942! (What took them so long?)

1931
Dr. Warren shares information on a patient with a vascular chondrosarcoma who had a blood clot go to the lungs. (I had a pulmonary embolism after one of my surgeries. You think with all this forwarning there might have been some way of watching out for that possibility, or maybe even preventing it. Okay, I am grumpy about this one.)

1941
Dr. L. Mayer declared a chondrosarcoma patient cured five years after chondrosarcoma resection. ( I wonder what he would have said of my seven recurrences over eleven years and late lung mets another eleven years after that?)

1942
Jaffe admitted: To make a diagnosis of chondrosarcoma on a histologic basis alone is often difficult if not impossible... hardly any studies which adequately indicate distinctions or transition stages between benign and malignant cartilage tumors of bone on a histologic basis alone. (This is true today. And sadly, many of the chondrosarcoma patients in my Chondrosarcoma Support Group have had the unfortunate experience of having been misdiagnosed for this same reason.)

1943
Two pathologists published the rules of recognizing chondrosarcoma as it's own entity, a bone tumor, and established the difference between central (arising from enchondromas) to peripheral (arising from osteochondromas) At that time, they knew CS developed in those who might have a solitary benign tumor, MHE, or Ollier's. They also knew that CS could be the result of irradation. The only treatment for CS was amputation.

1950
Amputations could be modified with the "turn about" procedure as designed by Dr. Van Nes, though not applied to sarcomas until 1982, whereby The foot became the substitute for the knee joint. (Gosh, and I thought this was something new developed in the 21st century.)

1959
Dr. Dahlin noted that those with pelvic chondrosarcoma were more likely to develop metastasis and did poorly. (I'm guessing it was because the only way to diagnose was with palpation and X-ray, then surgery. Unfortunately, full hemipelvectomy (half the pelvis, including the leg) were amputated.

1959
Mesenchymal Chondrosarcoma finally recognized as a different entity from conventional Chondrosarcoma.

1964
By this time scientists were able cause chondrosarcoma to grow in a rabbit by giving intravenous Beryllium, (presently used in nuclear weapons, by the way).


1967
An internal Hemipelvectomy was performed by Dr. Eugene Mindell, of Buffalo NY. The patient eventually was able to walk again. Though there were many recurrences the patient survived many years. (I can't say this was a first, but it was for me.)

1973
Still, the most common treatment for chondrosarcoma was amputation, unless the lesions were small or easily accessible.

I suppose I should have sited my sources now that I realize I didn't. Duh!

Well, I stopped putting this info together at 1973 because it was four o'clock in the morning. To be continued.....

A snake sarcoma article caught my eye one time. It was about a corn snake that was treated with chemotherapy for Sarcoma. (I think it was Ewings).

Now, I ask you, chemotherapy for a snake? What kind, and what dosage? Did the disease go into regression? Was it cured? Did the snake survive?

Shown to the left is a fellow being embraced by a friendly Boa Constrictor. Though the Boa in the picture, to the best of my knowledge does not have a sarcoma, this link will take you to the the article about the one who does.

Other reptiles get sarcomas, too! (even a crocodile.) Upon further reading, I also learned that, in the case of snakes, research has shown that their sarcomas are caused by viruses!

I knew about rat sarcoma virus. So, now I wonder how it is known they are caused by viruses. Does that human sarcomas also caused by viruses? I read all these articles that do not suggest it. Is anyone studying this possible cause in direct relationship to humans?


Speaking of Snakes and Sarcomas:

In Wirral, UK and youth named Nathaniel Fletcher needed a whole body scan because he has Clear Cell Sarcoma. His parents are members of a local motorcycle club, who arranged a reptile show charity event fund raiser with the Wirral Herpetological Society.

The National Health Service only offers Nathaniel and other children like him a partial scan on a yearly basis. Since Nathaniel's parents see the need for a full scan for their son, they saw the necessity of holding the fundraiser. A scan costs £750 if a person wants to pay for it himself. The event was "hands on" where those interested had the opportunity to touch and hold the snakes of all sizes. There were spiders, lizards and also owls. The event raised £534.


Some other articles of interest regarding reptiles with Sarcoma:

Monocytic Leukemia with Tissue Metastases in a Bearded Dragon

Undifferentiated Sarcoma in Western King Snake

Hemangiosarcoma in Corn Snake


Melanoma in Marsupials, Bird and Reptile