THE GUERILLA MENTALITY
(A PRIMER FOR BEGINNING PANCREATIC PATIENTS)
This checklist is provided to help you implement a plan of action to keep an upper hand in the challenge of your pancreatic cancer. This checklist is constructed from personal experience. Its purpose is to help you get organized when you're forced to switch into overdrive to meet the demands of the cancer and also accommodate your emotions that can be equally as daunting and consuming.
1. Risk factors for pancreatic cancer include: chronic pancreatitis, smoking and diabetes mellitus (which affected my father and became, in our eyes as we look back, the first symptom of what eventually became his cancer).
2. Symptoms: weight loss, loss of appetite, abdominal pain, change in urine color (may become dark with a coffee grain appearance). You may experience back pain as epigastric pain radiates in 50% of these cases. Cancers in the head of the pancreas may cause jaundice, an enlarged liver, and a palpable gallbladder, also called "Courvoisier's sign". You may experience one, all, or any combination of these symptoms. Jaundice and change in urine color were the first physical signs that alerted my father to his cancer. He made two office visits to his regular physician during the time he had jaundice who made no mention of it despite, his conducting a physical exam. It was a passing comment by a phlebotomist two weeks prior to his visit to this doctor who first brought the jaundice issue to my father. My father respected physicians and was quite upset with this phlebotomist for making such a statement. As it turned out, she was the one to note that something was wrong but because of her position and my father's perception that it was inappropriate for her to make a such a statement, he dismissed it. Doctors are not infallible. If you observe a change in your lifestyle or detect something that doesn't appear appropriate to you, make an effort to be emphatic in explaining your concern to your physician. If you do not receive a satisfactory acknowledgement of your concern, go for a second opinion.
3. A diagnosis of a pancreatic tumor is made. This is usually done by a CT scan and possible CA19-9 blood marker. A CT scan is more accurate than a transabdominal ultrasound. Endoscopic ultrasonography and magnetic resonance imaging (MRI) are promising new diagnostic modalities, although their test characteristics have not been well described. Be advised that CA19-9 markers may not be covered by Medicare, due to its assumed "experimental" status.
4. In some cases an ERCP may be conducted. This procedure is conducted via the radiology department. The procedure is invasive and expensive but allows direct visualization of the ampulla and radiographic visualization of the intrahepatic and pancreatic ducts-information that is helpful when malignancy is suspected. ERCP also allows dilation of a stenotic ampulla or stent placement (which helps to alleviate jaundice).
5. Now is a good time to purchase that medical dictionary. As you have seen, there is a lot of medical and science terminology being thrown at you. A personal recommendation is Mosby's Medical, Nursing, and Allied Health Dictionary. The cost is around $32 but it contains practically every term that you will encounter including those "annoying" acronyms you will see over and over again.
6. "Tumor size does appear to impact survival rates. The larger the tumor, the less likely it is to be cured by resection. However, even large tumors may be removed and a number of patients with tumors greater than 4-5 cm appear to have been cured by surgery. There is increasing evidence that the best pancreatic cancer outcomes are achieved at major medical centers with extensive experience - those that perform more than 20 Whipple procedures annually." (Ronald S. Hirshberg Memorial Foundation for Pancreatic Cancer Research.)
Additional information about better cancer care at major medical centers can be found in an article by Joseph Simone and Maria Hewitt. Simone, is the medical director at the Huntsman Cancer Foundation and Institute, University of Utah, Salt Lake City. I found this article in the Cleveland Plain Dealer, May 14, 1999, page 11-B.
7. There are at least a dozen highly regarded cancer centers that have their own web sites . Another way to see if a cancer center has extensive experience is by checking published research articles on pancreatic cancer from doctors affiliated with these institutes. If you live near a medical library, library or medical center that has MEDLINE, that is a wonderful place to begin. These on-line data bases can limit a search based on keywords or subjects. Medline is not the only on-line data base but it came in rather handy for us. You will also want to check out the National Cancer Institute's web site. They also have an 800 number: 1-800-4-cancer. They offer a service that will give you information on clinical trials that are being conducted in your region of residence.
Please note: In my research of clinical trials for my father, some trial eligibility requirements indicated that the patient have had no chemotherapy or resection, etc. Although time and treatment is of the essence, I do want to mention that you take into consideration some of these eligibility requirements if you are interested in enrolling in any clinical trials.
8. Housing - Okay, so now you've done some of your initial research and planning. If you are a candidate for the Whipple procedure™ and you have found a medical center that you feel is appropriate for you - you should contact their patient services department to see if they offer housing. Many medical centers offer housing, free shuttle service and meal plans at their facilities at reduced rates.
10. Begin a binder to place all your newly acquired research articles, newspaper clippings, lab reports and discharge reports. Having this information will be handy if you plan to enroll in other medical center clinical trials or just to keep abreast of what has been occurring in your own health care. Become an active and educated participant in your health care with your medical team. You can compartmentalize your information into areas such as; research, lab results, wellness information, alternative treatments, pertinent clinical trials, travel/accommodations, etc.
11. One final thought on treatments/therapies - There have been a number of newly-regarded therapies. Anti-Angiogenesis is just one of the new therapies being conducted at a few medical centers. There are a number of new procedures in the research phase that can be considered if chemotherapy or radiation is not a viable option for you. Be sure to check with your medical team to see if they know of any or if you qualify for any of these therapies. In your literature search, you will undoubtedly come across articles on some of these therapies. You should bring these to the attention of your physician to see if they are aware of them and if they are applicable or are of possible benefit to you.
12. Financing your cancer care - Some of you may be short on funds and think that perhaps, you can't afford to go to medical centers away from your home. This is where you need to become creative. If we refer to the beginning of the AIDS crisis, many patients and their loved ones implemented guerilla tactics to avail themselves to treatments, drugs, housing, and other ancillary needs not covered by health insurance companies or social agencies. They had the ability to create foundations and organizations that covered needs such as; meal delivery, rent subsidizing, medical supplies, etc. You can do the same for pancreatic cancer.
How you ask? Here are some suggestions. Your church, the local media, The American Cancer Society, your local civic group. Some local retailers may be able to assist you in a monetary way. Let's take a look at some of the possibilities.
a. If you need to fly to another city to attend a particular medical center, you can inquire if that airline has any programs that offer discounted airfares for patients and their immediate family members. Also check with your local travel agency. If you have a large corporation in your town that owns a company jet or the local town millionaire who is involved in philanthropic causes and owns a personal plane, may be another option. You may also want to contact the Dream Foundation at (805) 564-2131. They assist adults with life-threatening diseases. They are not affiliated with The Make a Wish Foundation but act in a, somewhat, similar manner.
b. Hotels. Some hotels have arrangements with local medical centers to offer discounted rates to families who have a loved one receiving medical care. Check with that medical center's patient services department for more information.
c. The local media. Pancreatic cancer is not a highly publicized disease. Your local newspaper or TV station may want to do a human interest story on pancreatic cancer involving the town's practicing oncologist speaking about the devastating effects of this disease and its need for greater public attention. The piece could also incorporate your current situation as a patient living with pancreatic cancer. In the piece, the journalist mentions that money is needed for you to be able to travel to a particular medical center for treatment or money is needed to help defray costs. A trust account can be set up at a local bank where donations from interested townspeople can be made. We see these stories all the time. There is no reason for you not to think of this as an option.
d. Your local church. A collection may be taken up to help defray the cost of your medical care. Perhaps a potluck can be held or a church dinner with the proceeds being donated to help with your expenses.
e. Friends and relatives. Gifts are a beautiful way to show that you care and are supportive of your friend or loved one who is living with pancreatic cancer but as the saying goes, "Nothing says I care better than money". Think of what that money would mean to someone who is dealing with their cancer and also dealing with the stress of insufficient funds? If you are a friend or relative reading this, you may want to make the gesture of a cash gift to show just how important this person's survival is to you. There is nothing worse than to be dealing with a major illness and also wondering how you are going to pay your bills or finance your care.
f. The American Cancer Society or a local cancer organization or support group. You may want to enlist the help of these organizations. I'm not sure what assistance you may receive from The American Cancer Society. They may have knowledge as to established Foundations that have allocated monies for such needs. You may also want to contact a local cancer support group. People who were cancer patients may be empathetic to your cause and may happily want to donate money to you to see you also become a survivor of cancer.
g. Your local retailer. Many stores make donations to local fund-raising activities. You may inquire about a local retailer donating a percentage of its daily receipts to your cancer care. I have seen TV news pieces that reported on certain local stores sponsoring such events - it is one more option you have to utilize.
The main objective is to do whatever you can to keep you or your loved one alive. There are many other sources you can utilize to help find funding but the main thought is "you got to play in the game if you want to win". You may want to submit suggestions, via email, to me and I will forward them to other interested emailers.
13. NUTRITION. Nutrition is an important element in keeping yourself fit to endure your chemo- or radiation therapy. It is also important to nutritionally rebuild yourself after surgery. There are many wonderful books available at your local library on the subject of nutrition and cancer. You may also want to spend a morning at your local bookstore perusing nutrition magazines. Your local cancer agency may also have brochures on nutrition and cancer available. As I have previously stated, I don't endorse or advocate any particular therapy, book or item. You should make yourself aware of as much information from all areas of theory, as it pertains to pancreatic cancer. You can write to me to get a list of pertinent available readings.
14. Keeping abreast of your chemo- or radiation therapy. Communication with your physician is key to your survival. As I have mentioned before, its your life and you must become an active partner in your health care. Report any physical symptoms or "odd" feelings you may be experiencing with your therapy. Discuss a plan of action with your physician. Some patients do not respond to certain types of therapies. Ask your physician for the response rates of your currently prescribed therapy(s). Ask them what the course of action would be if such a failure occurs. In the literature that I have read, it is indicated that when a diagnosis of pancreatic cancer is made (the primary cancer), it is rarely confined to the pancreas and there is usually metastatic activity occurring in another organ, this is the reason why pancreatic cancer carries a low survival rate. Look, you've already been dealt the most disheartening news, a diagnosis of pancreatic cancer. Now, it is time to take charge of the situation and do all you can to keep this cancer in check and to keep yourself alive!
15. DON'T LET YOUR CANCER CONSUME YOUR LIFE!!. You undoubtedly are saying to yourself, "What! is this guy nuts? He has us doing all this work and now tells to also have a life?" You have been given a jump on things so that you don't have to spend endless hours just getting to the point of having a plan of action. It is imperative that you make time to do relaxing and enjoyable things. Go to the movies, a concert, sporting event, read, watch TV, exercise. Pamper yourself with a massage, or a weekend trip or vacation. You can accommodate your cancer care, your family, your job and recreation. Remember, that in putting forth all this time and effort to extend your life, that you don't forget that you still have a life!
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Site created 07/03/1999
Last updated 03/08/2002