Rare Adult & Pediatric Cancer Web Blog

I am working on a rare cancer symbol and ‘ribbon’.  I will have that work done this week and (hopefully) will be drafting up some bumper stickers, window clings, decals, pins, and pendants for rare cancer survivors.

At the same time, I will be writing up the story behind this symbol and why I chose to design it this way.  I hope that it will let others see how we do not necessarily benefit from research done for more common cancers.  If anyone would like to participate by sharing your story of ‘difference’, please let me know.

Take Care,  Sharon - www.rare-cancer.org

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.”
=========

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

In 1998, I was diagnosed with a cancer - adenoid cystic carcinoma - that is slow growing (even indolent) at times, but can be aggressive or even turn that way after some time.  It has a propensity to metastasize to the lungs, primarily; but can also go to the liver, bones, and brain.

 Some people who are diagnosed with this rare cancer go through surgical removal and radiotherapy and go on to live a long life.  Others, are re-diagnosed many years after the initial diagnosis (past that magical ‘5 year’ cure marker), and their disease comes back with a vengeance.  Still others have a rediagnosis and live with the cancer in their lungs for many years.  And some never get past that first diagnosis.  Their cancer is the fast-growing variety and they perish very quickly.

 I bring this up for a reason.  As many of you know, I host a number of support groups for rare cancers.  And one question that I am asked repeatedly is how do I get on with ‘living’ again, when I am so afraid my cancer will come back?  How do I get past the fear?  I can only share my own story with them.

I went through surgeries and radiotherapy treatments for over a year.  It took a number of surgeries to remove my cancer and surgical removal is still the best (maybe only) treatment that works on it.  Then I went through almost another year of biopsy surgeries for benign lumps and reconstructive plastic surgery and recovery.  So, my ‘initial voyage’ was lengthy. 

I had started to think of myself as a lifetime cancer patient.  And then, it all stopped.  Boom!  And the medical professionals expected me to just turn around and forget about it.  I couldn’t!  Ever lump, every bump, scared me.  And the slow progessive recovery made me wonder if I was ever going to really live again.  And, slowly, I started getting past the fear.

Then, I was told there was a growth in my ovary.  But, ‘they’ would watch it.  I was scared again.  Breast cancer survivers have have higher percentage of ovarian cancer than ‘normies’.  And I sat and worried and waited for the next year’s checkup.  Slow growth, but growing.  I was still told not to worry because it was a ’simple cyst’.  The following year it turned questionable and kept growing.  The next year it was ‘larger’ (the doctors word, not mine).  Further tests showed it had turned complex, but I was still told not to worry.  After all, the uterus looked good.  The next year, my ovary had been ‘eaten’ (not my word either) by this ‘mass’ (yeah, that’s what they called it now).

God, how was I supposed to go through this.  The oncological surgeon wanted me to have just the ovary removed.  In fact, he insisted on it.  Thank God my gynecologist was also a surgeon and understood my ovarian cancer risk and my own fear.  He did the surgery that I requested - remove it all!  Including the cervix.  And thank God we did because from what he removed, I am sure it saved my life (whew, again!).

And ‘they’ are still following some nodules in my thyroid.  One is .7 cm. and of a complex structure.  I am told they cannot biopsy it because it is not large enough.  At 1 cm, they will.  And ‘they’ want to know why I am fearful of it.  My original rare cancer is normally found in the head and neck regions, but sometimes found in the breast and other areas.  Go figure! 

 I might sit back and wonder what clinicians feel like when they are diagnosed with a rare cancer, but I can’t.  You see, I have a good friend who was a doctor and has been fighting leiomyosarcoma for a very long time.  It has been attacking her body, over and over again.  And she fights it with all her might. 

She is afraid, sometimes.  I am afraid, sometimes.  So, when you ask me how you are supposed to get on with living.  I don’t know, life just has a way of becoming more demanding and, somehow, you do.  And how do you get past the fear?  I don’t know because I don’t.  I learn to live with it, just like some of my compatriots learn to live with their cancers, alive in their bodies.

Cancer is not a chronic disease, yet!  I hope, for my grandkids sake, that it will be someday.  But, my experience as a rare cancer advocate has taught me that it kills, sometimes; brutally debilitating sometimes.  And I will always take the ‘lumps and bumps’ seriously.  No matter what ‘they’ tell me!!

I am sorry I have not published a Rare Cancer Forums newletter in quite some time.  I have been swamped with work for the website and software modifications that have had to be made because of hacker possibilities and security defenses.  Sometimes, just keeping up with this is a full time job.  Let alone, all the work of keeping the website maintained, answering cancer patients on the internet and phone, etc..

I realize that many of you do not have the time or inclination to volunteer to help.  I have learned to accept that.  Many of us on the forums are adults, but we have some parents with children also.  These kids won my heart and soul years ago and motivated me to become a cancer advocate.  When I was going through my own cancer surgeries, I was also helping a young child with brain cancer that a family member of mine had referred to me.  The ‘kids’ have been there with me from the beginning.

That is why I am sending out this plea to you for help.  Volunteer whatever you can give in time, or ask a family member or friend if they would like to help.  I have been unable to spend any time working on the KidsPlea website:
Kidsplea.Org

I need an army of volunteers to help me look up pending legislation that may effect our cancer kids.  I believe that if we start pushing for legislation, as a group, we just might be able to keep the kids from going through what we have all been through.  If you (or someone you know) can give me a half or hour of your time, each week, please contact me.  I can teach you how to do this, regardless of your computer expertise level.  I will walk anyone through it, if they are going to stick it out on the job for a while.  Please, I cannot spend my time training if you are not going to follow through with your intentions.  I have done far too much of this for the ‘volunteers’ who have not stuck it out with me.  I need volunteers that can commit to this project. 

Thanks for reading this.   Please pass it on to anyone you know who might want to get involved.  They can use the contact form on the website to contact me:
Contact Form

I hope you are all doing well.  Our membership is growing but very little posting on the forums is being done.  I am not the expert on your cancer - you are.  And as a ‘group’ you are very expert in your cancer areas.  You just need to start sharing information with each other to find this out.  Use the forums, it will help us all.

Take Care,  Sharon
http://www.rare-cancer.org

I spent several hours doing updated research on adenoid cystic carcinoma - breast and head & neck, cancers of the appendix, carcinoid, phyllodes, pseudomyxoma peritonei (pmp), and several other rare cancers.  On some, there was not much new since my last update.  But, others had some very interesting journal articles. 

If you new (or relatively new) to the rare or pediatric cancer world, you are probably wondering where I got all these great articles. So, I will share what I learned early in my own cancer journey. 

When I was dx’d in 1998, I had a very rough time finding information.  The internet was not as easy to navigate and the rare cancer info on it was sorely lacking.  I knew I needed to do my own research because my oncologist honestly told me that.  I asked around until I found out that tucked away in my local hospital, in a coat closet (it sure felt like one), under a stairway (literally) was a treasure trove of information.  It was called the medical library and it was there to service the doctors on staff.  And in that library was a virtual life raft for me - Laura, the medical librarian!

This lady was drop dead gorgeous, so the last thing I expected was someone so helpful and intelligent (me and my stupid assumptions!).  She not only helped me find articles, she printed them for me, even spent her free time researching for me.  She was very computer literate and medically literate and she taught me a great deal about finding treasure troves of info on the WWW.  And I shut my mouth and listened and learned.

That was several years back and I have migrated around the country.  I am sure Laura has moved on (at least I hope someone offered her something better than a stairwell!).  The most important lesson she taught me was that most hospitals, teaching hospitals, or universities with medical education programs, have a medical library. 

Today, I spent my research hours at the University of Arizona Health Sciences library. It is a 45 minute drive from my house, but well worth the trip and gas money.  I always find a great deal of precious information there.  I downloaded 4MB of journal articles today that I will read in my spare time (WHAT spare time??). 

In any event, if you want information on your cancer, search the stairwells of your local hospital.  Find your medical or university library and start using their resources.  For me, I just want to give two thumbs up to the librarians of the world.  One of you not only helped me save my own life, but gave me the knowledge to help others save theirs!

Since 1998 I have been helping rare cancer patients find information for their cancers.  It has always astounded me that the larger percentage of these people do not have a copy of their original pathology, hematology, or surgical report. 

This report is invaluable when it comes to doing research for rare tumors or cancers.  It gives you the specific diagnosis, size of the original tumor, whether it was completely excised with clean margins, cell type, and any important characteristics (sometimes called ‘markers’).

Doing research without this information is like driving with a blindfold on.  You may be lucky and find things, but you may just crash and burn from spending hours doing research that does not apply to your cancer.  So, my best advice for any person who is newly diagnosed is - Get a copy of this report. 

Keep it in that notebook that I discussed earlier.  And, if you have multiple surgeries to remove your tumor(s), get all subsequent reports.  I have a close friend whose cancer migrated in cell structure three times.  Changes can occur.  They are rare, but isn’t that what brought us all here?

When someone is diagnosed with cancer, they are profoundly and immediately changed.  ‘Overwhelming’ is a gross understatement.  Then there is all the new ’stuff’ you have to do - doctors, labs, surgeries, treatments.  I am going to add one more, very important, thing to your ‘to do’ list.  Start a Cancer Notebook.

 I learned, very early in my cancer journey, that doctors don’t necessarily communicate well.  You will most likely be traveling to a number of doctors or medical facilities.  And asked a LOT of questions, reapeatedly.  You will find out that doctors do not necessarily share precious information about you with each other.  This is where your notebook just may save your life when you are in the fight of your life - battling cancer.

Start the notebook with a complete medical history - all surgeries, diseases, conditions, medications, etc..  Anything your doctor asks you for in the way of information should be added to the notebook. 

Also, include all the doctors you are seeing - general practitioner, cardioloigst, oncologist, etc..  Any, and all doctors should be included, along with their addresses, phone number, and specialty.  List all the laboratories where you commonly have lab tests, such as blood tests, xrays, mammograms, etc.. And any facilities that might have imaging or laboratory tests pertinent to your cancer diagnosis.

Now, you need to start filling your notebook with reports.  When you are first diagnosed, your doctor will discuss your diagnosis.  He/she get much of that information from your pathology, hematology, or surgical biopsy report.  You need a copy of that report to put in your notebook.  This is a MUST!   If you had multiple biopsies or surgeries, make sure you get copies of ALL pathology, hematology, or surgical reports.  Every time a piece of cancer is removed from your body, you need the report

You should get copies of all reports from imagings, labs, ekg’s, pre-surgery tests, etc..  And it would be very beneficial if you could get your ‘consult’ reports.  Normally, when one doctor sends you to another for an ‘opinion’, they draft up a consult report to summarize their opinion about your case.  Get copies of these and put them in your notebook. 

Now you are ready and armed to do battle!  When you go to see a specialist, you will have everything they need to review your case, wisely.  If you have just a few reports, you may want to make copies and give them to the new specialist.  They may not know any of this information.  You would be surpised how many doctors do a consult without being given the entire history of the patient.  They depend on you, most often, to verbally tell them everything.  Well, being a cancer patient, your mind might not be clear enough to remember it all yourself! 

Oddly enough, doctors treat cancer patients as if they should be clinical, calm, and detached in their view of their own cancer.  I don’t know about you, but I was anything but calm and detached.  I was nuts!  My notebook somehow saved me from looking nuts, though.  I ‘had it all together’ - at least in the notebook!

Take Care,  Sharon Lane   www.rare-cancer.org