Rare Pediatric Cancer Support
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Prior To Cancer Treatment

Prior to deciding on a treatment for your cancer, you may want to have a base knowledge of what your cancer is and how far it has progressed.  Rare cancers are not necessarily easy for a pathologist to identify on a laboratory slide, since they are rarely seen.  Mistakes or misinterpretations are sometimes made.  So the first thing I would advise you to do, is make sure that you have the correct diagnosis.  If you have not had a second independent opinion on the pathology of your cancer specimen, you may want to request one.  Also, request a copy of both pathology reports for your own records.  You will need this if you are going to attempt doing research on your cancer.  The treatment suggestions that your physician makes will be based largely on your pathology report and your overall health.  The correct pathology and diagnosis is extremely important.

Suggested treatment protocols are normally based on past knowledge about the cancer, it's stage, your physical health, and the availability of the treatment.  Rare cancers may create a challenge based on this standard method, because of the small number of patients being treated and reported.  This means that with many rare cancers, standard treatment protocols may not be available. For many, it is not an easy task for scientists and physicians to find enough patients with a particular cancer to be able to test a variety of treatment protocols.  Somehow, many researchers do overcome these barriers and are able to formulate drugs and protocols that work very well on a particular rare cancer.

In the instances where I have seen this happen, since the beginning of my online cancer journey, the support groups were the starting point for many people becoming aware of the new treatment.  They become a beehive of activity and the word gets spread among the communities quickly.  It is an incredible miracle to watch.  Keep in mind that treatments are being developed globally, so some treatments may be available first in a country other than your own.  Online support communities offer you a method of gathering global information.  Being aware of the treatments that have worked well for your rare cancer may involve an active participation on your part.  

If your cancer is considerably rare, chances are you do not have an oncologist in your area that has treated it in the past.  You may not feel comfortable having an oncologist who is unfamiliar with your cancer.  Which means you will have to build your own database of information to make a wise decision on how you may want to proceed.  You may decide to leave your area and visit an oncologist that has treated your cancer in the past, this will also take some research on your part.

Once you have chosen an oncologist to treat your case, he/she will suggest a treatment protocol.  Here are some suggested questions that you may want to think about and ask your doctor prior to treatment:

Have you treated this cancer in the past?  If so, how many patients have you treated?  If not, is there a professional in this area who has?  Or, are you willing to do research or confer with other specialists (world wide) on my cancer and share the information with me?

Have you treated this cancer successfully with this treatment?  What was the overall outcome of this treatment?

If you have not used this treatment in the past, can you supply me with the information that you have which made you arrive at a decision to try this treatment?  May I have it in writing so that I can review it?

Is this treatment considered experimental (in the trial phase of development), curative (resulting in a known cure or remission), or palliative (for comfort)?  If it is in the trial phase, do you have someone available to explain the full procedure and the complete clinical trial information?

Will other medical professionals need to be involved with this treatment?  If so, have they treated this cancer in the past?  Will you be coordinating the team effort on this treatment?

Do you believe I am physically capable of completing this treatment?  If I am unable to complete it, how will that affect my overall outcome?

What have been the long and short term side effects of this treatment?  Are there medications that will help me to control the side effects?  How long will the side effects last?  Are there any permanent side effects?

What measures will I be able to use for pain management, if needed?  Are there side effects to these?

What are the projected risks or benefits of this treatment?

Does this treatment require hospitalization?  Or is it administered on an outpatient basis?

How much time will be required for the treatment?  Over what period of time?  Will there be intervals between treatments?  Will I be able to resume normal daily activities during those intervals?

Will I be monitored by you or another professional during this treatment for effects and progress?  Will I have access to you or another physician in case I need to discuss unacceptable side effects?  Will you be able to detect whether the treatment is working properly?

What physical limitations can I expect during and after treatment?  How long will the recovery process last?

Does this treatment require that I have assistance in transportation or assistance at home?

Will my insurance company cover the cost of this treatment?  If not, is there financial assistance available?

Are there other treatment options available to me?  What are the pros and cons of each vs. this treatment?

Does your facility have support staff for help with insurance, financial, transportation, educational, or emotional issues?  If not, is there someone on the staff that will assist me in finding this help?

And here are some questions you may want to ask yourself:

Do I need to get a second opinion?  (My personal suggestion is that with rare cancers this is always advisable.)  Does the second opinion agree with the first?  If not, should I go for a third opinion?  Or should I do further research to help my decision process?

Am I comfortable with this physician and his credentials?  Do I feel free to ask questions or make comments?  Will he/she take the time to answers those questions?  If not, do I want to choose another physician to coordinate my case?

Will I feel comfortable postponing decisions or changing my mind during treatment, if I find the treatment intolerable or unacceptable?

What are my treatment goals?  Am I looking for a cure or remission; or am I looking for improved quality of life for the time I have left?

Have I heard of this treatment being used on others with my cancer?  Am I comfortable with that knowledge?

Would I prefer finding an oncologist who has treated this cancer?  If so, am I willing and able to travel for that care?

Do I believe I am physically and emotionally capable of completing this treatment?  If not, is there assistance available that would make it more acceptable to me?

Will I be able to take care of myself (pay bills, eat, rest, get to appointments) or will I need assistance?  If I may need assistance, is it available to me in my community (friends, family, other survivors, or organizations)?  Can I arrange this assistance ahead of time so that I am more prepared?

Does my insurance pay for this treatment?  If not, will I be able to financially afford this treatment?  If not, is there financial aid available?  Do I need the help of an advocate for insurance difficulties?

Are there things in my life that I can do ahead of time that will lighten my burden during and after treatment?

The Treatments option on the expandable menu contains modules that give you brief information on many of the cancer treatments in use today, along with methods to learn more about each.  You can access those modules by clicking on their respective icon.  There are many other treatments available, including combination therapies.  New treatment protocols are being developed on a constant basis.  And theories of cancer treatment and cancer care are in a constant state of development and testing.  Hopefully, you will get a basic knowledge by reading the modules in this section and that will help in your research of treatments for your particular cancer.

You may want to look at this resource, in preparation for your treatments:

American Cancer Society - self care guides for treatment side effects.