Rare Adult & Pediatric Cancer Web Blog

This procedure allows for direct infusion of chemotherapy agents into an artery.  This enables the doctors to more precisely pinpoint the area to be treated, deliver higher doses and concentrations of the drugs, and decrease exposure to the rest of the organs of the body.  This is a definite advantage in many circumstances; such as brain tumors where the blood-brain barrier may prevent many drugs from reaching concentrations that would kill tumor cells.

Your doctor may use the insertion of a catheter to deliver these drugs.  Which means, there are possible complications that you need to consider.  If the tumor being treated is in the brain, the procedure used to insert the catheter will require anesthesia, drugs to prevent seizures during or after the procedure, and blood-thinners during the procedure to prevent stroke. 

Make sure that you thoroughly discuss the procedure and any possible complications with your doctor.  Ask your doctor how many of these procedures he/she has performed.

Intraperitoneal hyperthermic chemotherapy is being used, sometimes in conjunction with cytoreductive surgery, for selected peritoneal malignancies. Here is an excellent video presentation of intraperitoneal hyperthermic chemotherapy:
Wake Forest Video Presentation

You must have Real Player installed on your computer to view this video.  For a free download of Real Player, click here.

Types of cancer/conditions treated may include:

• Appendiceal Neoplasms with Peritoneal Dissemination
• Peritoneal Carcinomatosis
• Peritoneal Mesothelioma
• Peritoneal Sarcomatosis
• Pseudomyxoma Peritonei

Other types treated can be found here:
Dr. Sugarbaker - Current Indications For Use 

You can become a part of on of these clinical trials:

• Thalidomide in Treating Patients Who Have Undergone Surgery and Chemotherapy for Cancer That Has Spread Throughout the Abdomen Due to Colorectal Cancer or Appendix Cancer
• Continuous Hyperthermic Peritoneal Perfusion With Cisplatin Plus Intraperitoneal Paclitaxel and Fluorouracil Following Surgery in Treating Patients With Peritoneal Cancer
• Surgery Followed By Chemotherapy With or Without Intraperitoneal Chemotherapy in Treating Patients With Peritoneal Carcinomatosis From Gastrointestinal Cancer

So Is IPHC right for you? Blistering, burns, tissue swelling, blood clots, bleeding , and renal dysfunction were the possible side effects quoted in some of the abstracts I read. 

Morbidity is low if this treatment is administered in specialized centers with the necessary expertise and technical resources.  Keep in mind that this procedure is still considered relatively new.  Not all facilities/physicians are using it.  If you have chosen to do this, choose a physician who has extensive experience in this procedure. 

Take Care,  Sharon  www.rare-cancer.org 

I found an excellent resource on the web for those of you who are considering gamma knife stereotactic radio surgery.  It is a comprehensive video website presentation of an actual procedure; including the entire planning process.  Make sure that you have Real Player installed on your computer.  For a free download of Real Player, click here.  Once you have Real Player installed on your computer, click here to read about this video:

Wake Forest video of gamma knife stereotactic radiosurgery

Click on the View Archived Webcast button and the video should start to download on your machine.  If you are considering this procedure, you are going to want to view this. 

In the year 2005 100,417 patients where treated with gamma knife in north and south america.  Tumors treated were both benign and malignant.  Of the 29,332 benign tumors treated, this is the breakdown:

• Meningioma 43%
• Vestibular Schwannoma 31%
• Pituatary Adenoma 14%
• Other, Benign 12%

The breakdown for the 44,960 malignant tumors treated is:

• Metastatic Tumors 78%
• Malignant Glial Tumors 18%
• Other Malignant 4%

There were also 76 cases of uveal melanoma treated with gamma knife.  I can tell you that these statistics have increased considerably in 2006.

So, is this treatment right for you?  Yale-New Haven has put together a good FAQ about Gamma Knife:
Is Gamma Knife right for me?

You can also watch another video and read more information at the Leskell Gamma Knife website:
Stereotactic Radiosurgery

Now, you will at least be armed with plenty of information before making your decision.  If you choose this treatment, please come back here and share your experiences with it.

Take Care,  Sharon  www.rare-cancer.org

“Acceptance is the answer to all my problems.” My close friends said that to me when my husband died. He did not die from cancer (I am the cancer patient), but he did die from long term medical problems. Many of my friends said “you knew it was coming”. And they told me that I would feel better, day by day. None of this was true. None of it was ‘acceptable’ to me.I went through stages of anger, sadness, loneliness, fear, and a desire to die myself. It took a very long time to feel even a little better. And a much longer time to find some normalcy in my life again. Some people told me it would take me one year. It took me 5+!

So, one thing I learned was that each person is different, each loss is different, and each grief process is different. The one thing I can tell you is to expect the unexpected and to not listen to other’s judgments about what you should, or should not, be feeling, thinking, doing. Be patient and caring with yourself.
 

Take Care,  Sharon  www.rare-cancer.org

From ASCO -

http://tinyurl.com/n5o3k

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!

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 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