Rare Adult & Pediatric Cancer Web Blog

From ASCO -

http://tinyurl.com/n5o3k

The Benefits of Online Support
Kevin Wright, Ph.D., a researcher at the University of Memphis, has studied online groups that deal with cancer. Wright, whose mother’s death of breast cancer several years ago sparked his interest in online support for cancer patients, has found numerous benefits in online support. “Online communication allows people to interact with a diverse network of people dealing with similar issues,” Wright said.

“In our face-to-face networks, we tend to communicate with people who are very similar to us. But when we are faced with an issue such as cancer, we may find that people in our closest networks may no longer be able to identify with what we are facing on an emotional level.”

According to Wright, privacy is another important benefit of online support. “Other benefits include the ability to safely disclose information to people who are removed from someone’s primary social network. Years ago, communication scholars found that people typically will only disclose sensitive information when they know people extremely well. However, there is one exception. For example, sometimes when people meet others on airplanes, buses, etc., they will disclose highly sensitive and intimate information since there is little risk that they will see the person again.”
Wright continued, “The same thing is true in online support groups. If you are talking to an anonymous person with cancer who lives on the other side of the country, it is doubtful that you will ever meet this person face-to-face. People in online groups have mentioned to me in my studies that they like the ability to disclose sensitive information about themselves in a relatively risk-free environment.”

Online support groups are, Wright noted, “relatively risk-free environments.” He said cancer patients can “sound off about problems without feeling like they are placing an excessive burden on others.” The researcher believes that “the opposite seems to be true in closer face-to-face networks.”

Finally, Wright said the Internet provides cancer patients with a vast deal of informational support. For example, if you pose a question or concern on a message board, you may receive a great deal of information – personal experience and links to professional websites, information, etc.”
Ultimately, Wright said he believes people with cancer who seek support online are “looking for people with similar problems who will understand their feelings and concerns.”
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This is so true…….

Stan

I am always so surprised at rare cancer patients when they believe that they have no information that would help another person with their cancer.  That is so wrong!

Your own personal experiences can help others with your cancer.  Online support groups allow us all to share our personal diagnosis and treatment experiences.  If we do that, after a while, patterns start to emerge.  Patterns that tell us if a particular treatment may or may not work for our cancer.

 And our personal experiences of how we got through a particular treatment can help others.  We all have a way of learning some simple techniques that helps us.  Others may not have figured that out yet.  If you share your technique, they might be able to use it to help them.  You also offer hope to others by sharing your own survivorship.

Lastly, the group itself may sometimes help a clinician or researcher access the sheer patient numbers required for clinical studies. This could help them evaluate a prospective treatment or disease aspect.

 Your participation in a group may possibly help someone to survive their disease, or could even help a researcher to beat the disease.  Please, don’t ever think you have nothing worthwhile to share.  With rare cancers, all information is worthwhile!

Adult Soft Tissue/Bone Sarcoma -  

Soft tissue/bone sarcomas are malignant tumors that may arise in any of the connective tissues (muscles, tendons, vessels that carry blood or lymph, joints, bones, nerves and fat). The peak age incidence is around 50 years. Sarcomas are a diverse range of tumors, they are named after the type of soft tissue/bone cell they arise from. Types of soft tissue/bone sarcomas include; alveolar soft-part sarcoma, angiosarcoma, fibrosarcoma, leiomyosarcoma, liposarcoma, malignant fibrous histiocytoma (MFH)*, hemangiopericytoma, mesenchymoma, schwannoma, peripheral neuroectodermal tumours, rhabdomyosarcoma, synovial sarcoma, osteosarcoma and other types.

Kaposi’s sarcoma is a type of cancer where malignant cells are found in the tissues under the skin, lining of the mouth, nose, and anus. Symptoms may include red or purple patches (lesions) on the skin and other parts of the body. Many (though not all) Kaposi’s sarcomas are AIDS related.

August 5, 2006

I have metastatic MFH* since 2000: (Eight Occurrences – as of 8-5-06)
(all surgery path reports were notated  MFHs).

All the following were tumors:

1. Right shoulder/arm interface – limb-sparing surgery, with adjuvant external radiation.

2. Anterior right thigh – surgery, with adjuvant external radiation.

3. Left para-spinal muscles – surgery.

4. Anterior left thigh, on the femor bone – chemo trip (only Adriamycin) to see if it can kill the MFH. Chemo didn’t.  5. Recur – left para-spinal muscles – surgery, with adjuvant external radiation. (Recur because of no radiation – in the first instance - #3).

6. Upper lobe of my left lung – surgery (thorocoscopy/thorocotomy).

7. “Satellite” of the left para-spinal muscle – surgery, with adjuvant external radiation. Was due to collection of MFH semi-solid sac that appeared ~ 1 month later from #5.

8. (Just last month) – (3-month growth of) 2 cm. “presumably” MFH on the anterior left chest wall, projecting into the pleural space; this was a  “left-over” piece from the thorocotomy (in #6. above). Radio-Frequency Ablation (RFA) performed for this tumor – to be imaged for effect – (CT) on/about Sep. 20, 2006. The RFA was a “piece-of-cake”, and I feel “great” since then.

If other tumors show up in percutaneous locations, I will explore the RFA procedure to apply to these. I’m tired of the “cut-and-take” jobs on my body.

So, you see that I am a sarcoma “survivor”, and at 75!

I am of the opinion (unfortunately), that rapid spread and recurs of sarcomas are more prevalent in people of age 50 or younger.

So, “youngsters”, if you have ANY symptoms (lumps, pain, etc. – anywhere on your body), go to a sarcoma center-of-excellence ASAP – to get the RIGHT diagnosis the FIRST time, and to start treatment – as per protocols.

With Hope & Life For All 
Stan