Random Thoughts On Cancer
Now that you have cancer you will begin to notice many articles and announcements about “Cancer” in magazines, newspapers, radio and television shows. For the most part, this information is not meant to educate you. Information about “Cancer” in the mass media is there simply because it “sells”. “Cancer” sells advertising time on television, it sells newspapers and magazines, etc.
Face it, as a society we are morbidly interested in cancer. Just about everyone knows a relative, friend or co-worker who has or had the disease. We all know that cancer is common and can cause death. People are naturally afraid of cancer because it is assumed that the diagnosis leads to sometimes difﬁcult treatment with surgery, radiation, and chemotherapy.
Advertisers and News Directors know that they can grab our attention by just mentioning the word “Cancer”. But don’t assume for a minute that the information you receive from a newspaper or television is timely or accurate (do you make that assumption for any other topic you read or hear about from these sources?).
We, the people who actually treat cancer, usually smile a little when we hear of a “New and Exciting” breakthrough. Without exception the “New and Exciting” breakthrough has either, a) been studied thoroughly and is currently incorporated into or has already been discarded from clinical practice, b) refers to pre-clinical animal or laboratory studies that have no relevance to treatment of real live human beings or, c) reports early human trials in which no conclusion can yet be made.
Just remember that even the information reported in major medical journals is rather dated by the time of publication. For instance, the time from submission of a medical article to publication in a major journal may be as long as 18 months! On top of this, the article may report the results of a study, which took several years to perform and was concluded years earlier. By the time that information reaches the mass media it may be really old stuff! As physicians, we inherently understand the historical nature of printed medical information. We take this into account when interpreting a newly published clinical study. The same cannot be said for mass-media outlets.
A few years ago I rode motorcycles (Harleys). I ﬁgured out a long time ago that it was always best to have a Harley-Davidson mechanic maintain and repair my motorcycles (rather than me hacking away at them). H-D mechanics go to a 2-year school before being certiﬁed. They maintain their certiﬁcation with regular training and seminars (just like any professional).
So what do motorcycles have to do with understanding gynecologic cancers?
Well, think about this. If you do a Google search you will get over 2,000,000 hits for “Harley Davidson” (try it!). I’ll bet that I could read every single word on each of those pages and still not be able to rebuild a Harley motor!
The same applies to use of the information on the internet to understand how we treat gynecologic malignancies.
Just as in any profession, physicians do not depend on the internet, television, newspapers or even our professional journals for the most current information on any medical topic. To do this we attend meetings of our Professional Societies (Society of Gynecologic Oncologists, American Society of Clinical Oncologists, etc) where information is disbursed long before publication, perform clinical research and discuss the new information with our colleagues.
You will ﬁnd that the best sources of information on any particular situation regarding your cancer will be me. I will be gradually educating you and your family about many topics related to the treatment of your cancer. You can always contact me with any question (no question is too minor to ask!). (Top of Page)
If you read the introduction to this area you know how vital is the line of communication between you and me during this time of your life. You will ﬁnd that I am always rather easy to contact. You can reach me at any time, 24 hours a day, and 365 days a year. This is a commitment I take very seriously!
You must take this commitment seriously also.
My office staff and I must be able to contact you 24 hours a day, 365 days a year during the time that you are our patient. There are many reasons for this:
Federal privacy laws prohibit us from leaving medical information (e.g., lab tests, biopsy results, etc) on voicemail machines at your place of work or even with close relatives.
I am often in surgery from early in the morning until late at night – I may have to return your phone call, email or text at odd hours.
The time/date of your planned chemotherapy or surgery may need to be changed.
“Phone tag” is a waste of your time and my time.
It is best to keep your cell phone on and nearby around the clock while you are being treated. It is best to give your cell phone number as your main contact number to our ofﬁce staff.
Record an identifying message on your voicemail. Without this, I cannot legally leave a message on your machine.
I love email and texting! You will be given access to our Electronic Medical Record Portal when you first become a patient in the practice. (Top of Page)
A Word About Privacy
The “Privacy Rule” of the Health Insurance Portability and Accountability Act (HIPAA) took effect on April 14, 2003. This Federal law has had a signiﬁcant impact on how your medical information can be disseminated. Severe penalties are applied to health care providers for any infraction of its multiple regulations. It has also had unintended but almost “chilling” effects on the doctor-patient relationship. For instance:
1. We (technically) cannot refer to you by your last name when in earshot of another patient or non-family member. This is why you are addressed by ﬁrst name only when being called from the waiting room.
2. We generally cannot have discussions with you or family members in our individual physician ofﬁces lest another patients chart, lab report, etc be accidentally viewed by you on our desk.
3. We cannot answer phone calls or respond to emails from a family member regarding your care unless you have given prior written permission to do so.
4. We cannot call you at your place of work. (Top of Page)
Friends and Family
Your friends and family love you and are concerned about you. They want you to know that they can be counted on as you go through the treatment of your cancer. So, of course, they will talk to you about the experiences that they have had with cancer. This may be their personal experiences or what they have witnessed when other family members or friends were diagnosed with a malignancy. Although cancer is not rare, most people have very limited exposure to the topic. What they do know about cancer will probably have no relationship to your particular case.
Just realize that when friends and family compare your treatment to “Uncle Joe” who might have had colon cancer 10 years ago (for instance), they are, in a strange way, just telling you that they care about you. (Top of Page)
It’s Not All The Same
Most people believe that “Cancer” is one disease – it just starts in different parts of the body. Yet those same people have no trouble in understanding that a viral sore throat is somehow different from peritonitis resulting from a ruptured appendix – even though the sore throat and ruptured appendix are both “Infections”.
“Cancer” is actually a term used to describe many diseases. To an extent, there is as much of a difference between breast and ovarian cancer as there is between a sore throat and ruptured appendix. Somehow, we all understand that there is a difference between a viral infection that causes a sore throat and bacterial peritonitis caused by a ruptured appendix (both are “infections”). Likewise, there is a tremendous difference between breast and ovarian cancer (even though both are “cancers”). Breast and ovarian cancer are treated differently, have different prognoses and microscopic appearances.
The treatment given to you is unique to your cancer. Furthermore, the treatment you will receive is probably a little different than that used to treat the same cancer a few years ago and it will probably be different from the treatment administered to a patient with the same cancer a few years in the future.
Changes in the treatment of gynecologic malignancies occur frequently as new information is incorporated into clinical practice. We don’t treat any gynecologic cancer in exactly the same way that we did even two years ago and I fully expect that we will be treating these cancers differently two years in the future! (Top of Page)
All You Engineers Out There…..
I should include Mathematicians, CPA’s, Physicists and anyone else who lives in a world where 2+2=4. You are now entering the “Biologic World of Medicine”. My world……
In my world 2+2=4 most of the time, but every once in a while the correct answer is 5, or 6.7, or 3…..you get the idea.
We can know the general direction you must take in order to optimize your likelihood of cure. We just cannot know the exact path you will take to get there. It will be different in every person. Keep reading…. (Top of Page)
The Big Question
Everyone asks it. Why did I get cancer? What did I do wrong? There must be a reason.
Believe it or not, we really do not know why a given individual gets cancer on a given day of her life! We actually do not know why people get most diseases! Take appendicitis (again)………
Why does a given child get an infected appendix on a given day of his/her life? We know how to diagnose appendicitis. We know how to treat appendicitis. But we don’t know why that appendix decided to become a problem last Thursday.
Here’s a real puzzler. My oldest sons are identical twins. They are genetically identical. They are also environmentally identical (they have the same friends, and were always in the same classes and sports teams at school). When Nick was 11 months old he got itchy eyes, a skin rash and started sneezing when I brought a little kitty home from the pound one day. Chris, on the other hand, was not allergic. Neither of my boys had ever previously been exposed to cats! How can this be? Maybe if we could explain how identical twins with identical immune systems can react so differently to an allergen we could then go on to explain simpler things like why people get cancer.
Most of the time when we are diagnosed with a disease we don’t tend to spend a lot of time looking for reasons why... we accept the diagnosis and do what we need to treat the illness. Conversely, we don’t spend a lot of time wondering why we don’t get an illness (do you spend a lot of time questioning why you were the only one in your ofﬁce that did not get the ﬂu last winter?).
A diagnosis of cancer, however, often leads one to an exhaustive search for reasons. You may assume that we, as physicians, should be able to explain why you got cancer. After all many behaviors have been associated with a higher incidence of cancer. But let’s look at this a little more carefully.
Everyone “knows” that smoking cigarettes causes lung cancer, right? Well, then why do very few people who smoke heavily actually get lung cancer? Why is it that 20% of lung cancer cases occur in people who have never smoked? Why did Uncle Joe, who smoked 3 packs a day, get lung cancer at age 71 – why not a year earlier or a year later?
Obviously, I’m not minimizing the effect of smoking on the development of lung cancer. I only want to illustrate the difﬁculty in ﬁnding simple explanations to complex problems.
Maybe someday in the distant future medical science will be able to predict the exact day in our lives that we are destined to develop any given disease. Until that time I, like my father (a pathologist) and grandfather (a general surgeon), will have to be content in ﬁnding better methods of early detection, and safer, more effective treatment of diseases. (Top of Page)
How Long Has It Been There?
How long have I had this cancer? Have you already asked yourself this question? Believe it or not, the length of time that a cancer has been present prior to diagnosis can never be determined!
When you meet someone for the ﬁrst time are you able to tell exactly what day, month and year they were born? At best, you can only estimate their age (e.g. “between 20 years old and 40 years old”).
It’s the same with a malignancy. As physicians, we might be able to estimate how long you’ve had your cancer (e.g. “between 2 months and 2 years”) but no doctor can know exactly how long it has been present. (Top of Page)
Am I Going To Die?
“Death is the enemy. The first enemy and the last. The enemy always wins…..and we still need to fight him.”
Yes, you are going to die. We are all going to die.
What we all want to know is when we are going to die. That’s a tougher question to answer. Even when you have been diagnosed with a serious disease, like cancer, it is not really possible for any doctor to tell you when you are going to die! Only one force in the universe knows the answer to this question (unfortunately God is a good listener but he doesn’t talk to doctors and give us the answers to questions like this).
I do know, however, that if everything regarding the treatment of your cancer is done in the right way at the right time your likelihood of attaining a cure is maximized. My goal is that you die some time in the distant future of something other than your gynecologic cancer! I would like you and your family to look back on these days from some point many years from now and barely be able to remember the emotional distress and physical discomfort that you went through to get there. (Top of Page)
In the internet search of your cancer you will read of percentages of various markers (e.g. overall survival, progression-free survival, response rate, etc.,). It is a good idea to understand at the outset of your journey how information like this is meant to be used and why you will rarely hear me speak of "percentages".
Think of it....you will not be 40% or 90% cured....you will either be completely cured (100%) or completely not cured (0%). Your treatment cannot be 30% "effective" or 75% "effective".....it can only be "effective" or "ineffective".
Data produced by prospective trials and epidemiologic study of cancer treatments is very useful in designing the particular regimen most likely to be successful in attacking your particular cancer. However, the same data cannot be used to predict the exact response of treatment in one particular person. (Top of Page)
There’s no way to get around it….you will have many occasions to come to our ofﬁce to see me, and, if needed, my chemotherapy nurses. Hopefully, you will have many visits over many years (think about it).
Now, don’t take this the wrong way, but ofﬁce visits are not meant to be a social event. The time to have long, unhurried conversations is not during an ofﬁce visit. This is my opportunity to assess the effectiveness of your treatment, investigate any new symptoms or ﬁndings, and determine whether any further evaluation is needed.
Don’t worry, you and I will have many long discussions about all aspects of your care as time goes by. If you have any surgical procedures we will have plenty of time to talk while you are in the hospital. I especially like to talk by phone after hours or early in the morning.
A ﬁnal word about ofﬁce visits….
We try very hard to keep things moving and run on-time during those busy ofﬁce days but unexpected issues always seem to arise. I know that you would probably rather be almost anywhere else than waiting in a physician’s ofﬁce, but there will be times when we will run late. Bring a book to read, surf the web or bring some work to complete for those days….we will promise to keep you waiting infrequently and for the shortest possible time. (Top of Page)
All About Chemotherapy
Chemotherapy drugs are cellular poisons. After all, they are supposed to kill cancer cells.
The “horror stories” you may have heard about chemotherapy just simply do not apply to the current management of gynecologic cancers. Yet, it is not difﬁcult to understand the negative impression of chemotherapy held by the general population.
Most people treated with chemotherapy have been diagnosed with one of the three most common malignancies – breast, colon or lung cancer. It is true that the regimens used for these cancers can tend to be rather tough on people. It is also true that by the time chemotherapy is needed for one of these cancers the overall outlook for that patient may be rather poor. Therefore, the general impression by the non-medical public about chemotherapy tends to be rather negative.
The initial treatment of gynecologic cancer, on the other hand, usually consists of chemotherapy drugs that are not particularly difﬁcult to tolerate. With rare exceptions, you will be able to return to work full time or otherwise resume whatever your normal activities were prior to your diagnosis.
Immunotherapy or immune-based cancer treatment, currently being evaluated in numerous cancer types, has the potential to further improve cure rates. Cancer immunotherapy is designed to help boost a patient’s immune system, which is often compromised following a cancer diagnosis. Immunotherapy enables the immune system to recognize, target, and eliminate cancer cells. (Top of Page)
In order to facilitate the safe administration of chemotherapy drugs and to make drawing blood for tests easier, a semi-permanent device (Portacath or PasPort) will be inserted. These devices consist of a small tube (catheter) placed into a large vein behind your clavicle or in your upper arm. The catheter is connected to a small device called a port that is about the diameter of a nickel and is placed underneath your skin (nothing shows from the outside).
A Portacath is placed beneath the skin of the upper chest. Placement of a Portacath takes about 10 minutes and is done by me in an outpatient surgery setting. The procedure can be done under either a local anesthetic or a brief general anesthetic; it’s your choice.
When you need chemotherapy, a special needle is inserted through your skin directly into the port. Our chemotherapy nurse then knows that the agents she is infusing are going into a large vein and circulating throughout your body appropriately. Blood can also be drawn from these devices, thereby eliminating the need to “dig around” in your arm for a vein every time you need a blood test. I recommend that once placed, Portacaths not be removed until we are sure that your cancer is cured – usually about 2 years after your initial diagnosis.
Usually, we will insert a Portacath within a week or two of your diagnosis and initiate your chemotherapy either that same day or shortly thereafter. (Top of Page)
Chemotherapy used to treat gynecologic cancers is administered either intravenously (injected into a vein) or orally as pills.
The agents most commonly used in the initial treatment of cancer of the ovary, uterus, fallopian tube and peritoneum consist of a combination of Taxol and Carboplatin.
Taxol will cause complete hair loss. You will see hair loss within 10 – 14 days of your ﬁrst dose. Taxol also causes numbness in the ﬁngertips and toes which gets worse as you go through your treatments but usually resolves completely after all of your chemotherapy has been given (although sometimes this can take many months).
Carboplatin can cause a low-grade type of nausea, which is usually completely prevented by anti-nausea drugs given to you at the same time as your chemotherapy. Some will notice a “ﬂu-like” syndrome 2 – 3 days after administration that lasts about a day.
If you are given intravenous chemotherapy you will most likely receive an initial 6 “cycles” (a cycle takes place over 28 days) of combined Taxol and Carboplatin. After 6 cycles you may be a candidate for “consolidation therapy” if there is no evidence of cancer on imaging studies (e.g. CT scans), physical examination or blood tests (e.g. CA125). Consolidation therapy currently consists of long-term administration of an oral PARP inhibitor or intravenous VEGF inhibitor (or both) for several years.
While you are given your chemotherapy you will sit in a special reclining chemotherapy chair. We encourage you to bring family or friends with you. (Top of Page)
If you have been diagnosed with cancer of the cervix, vagina or vulva your treatment will often require radiation after a surgical procedure. A special type of chemotherapy is given in conjunction with the radiation for these cancers.
While receiving your radiation a chemotherapy drug called Cisplatinum is given intravenously every week. When given in this way Cisplatinum potentiates the effect of the radiation (makes the radiation more effective). The radio-potentiating effect of the Cisplatinum lasts about 24 – 36 hours after administration. For this reason, you can receive the Cisplatinum on any weekday except Friday (your radiation will typically be given Monday through Friday). Cisplatinum does not cause hair loss but it does cause nausea.
You will receive additional drugs to prevent nausea but these drugs make you sleepy. For this reason, you will need someone to drive you to and from your chemotherapy.
Since your radiation may be given for as few as 4 weeks you may only need to receive 4 courses of Cisplatinum. For this reason, I do not typically suggest that a Portacath be placed. (Top of Page)
Almost all chemotherapy drugs cause some depression of your white and red cell counts and your platelet counts. We actually want to see this to some extent since the depression of your cell counts tells us that you are getting appropriately aggressive treatment. We just don’t want to see your counts go down too far or stay down too long. If we do start to see this then we may start you on medicine to force your red blood cell and/or your white blood cell count to come back up (Procrit, Neupogen). Sometimes we will have to delay your chemotherapy for a week or two to allow your counts to return to normal. This is all expected and will not compromise the treatment of your cancer. (Top of Page)
All About Radiation
Just as with chemotherapy there are a lot of unfounded “myths” about radiation circulating out there.
Radiation is a way of using high-energy sub-atomic particles to kill cancer cells. It is a very effective way of supplementing surgery or surgery + chemotherapy for gynecologic cancers.
We are fortunate here in Orange County, to have a number of excellent, topnotch, Radiation Therapy Centers. If you need this type of therapy you will be referred to a Radiation Oncologist at one of these locations.
External Radiation Therapy (ERT) is the most common type of treatment needed for gynecologic cancers. It is most commonly needed after a hysterectomy for uterine or cervical cancer if “high risk” microscopic features are identiﬁed at surgery. ERT takes a few minutes a day to administer. It is usually given daily, Monday through Friday, for 4 – 6 weeks.
ERT does not cause “skin burns” and you don’t lose your hair. ERT almost always will cause some diarrhea (easily managed with the usual anti-diarrhea medications) while you are going through treatments.
Sometimes ERT is combined with a special type of radiation delivered to a small area at the top of the vagina. This is done with a special intra-vaginal device. A very high dose of radiation can be delivered to this area very safely using this technique (Top of Page)
There Must Be An Easier Way
Cancer is a scary word. Treatment of cancer is neither quick nor easy. It is quite natural to look for a cure that does not involve surgery, radiation or chemotherapy.
You will ﬁnd an entire industry of “alternative” cancer therapies that take advantage of the fears and desires of patients with serious illnesses. This has always been the case. Let’s look at some of these “cures” a little more closely.
Shark Cartilage. This product probably ﬁrst appeared over 40 years ago and pops up again every few years. The original theory for its use was that sharks don’t get cancer and, therefore, one can treat cancer by eating shark products (?). I’ve always thought that this theory smacked of the ancient tendency of the human race to acquire the power and strength of an animal or relative by practicing cannibalism. Unfortunately, 14 different types of cancers have been described in sharks. On the other hand, no cancer has been described in earthworms………
Free radical scavengers. The theory is that “free radical” cause cancer (oh, if it was only that simple!). Various products have been used over the years (wheatgrass juice, etc.) but the current winner of the popularity contest is intravenous infusion of Vitamin C.
Herbs and Spices. You’ll see a gazillion various “natural” herbal products that claim to treat cancer. I am continually amazed at the new, exotically named products that turn up at health food stores. I am sure that I’ve seen some of these products in my salad seasoning, too.
Anti-oxidants. All you have to do is eat foods with “anti-oxidants” (e.g. blueberries) and you will kill cancer!
All alternative therapies have some commonalities:
No side effects. Look, you are an intelligent, hard-working individual. Have you ever gotten something for nothing in your entire life? Of course not! The same is true in treating a serious illness. It’s hard work. Be suspicious of any cancer treatment that claims to have no side-effects.
No regulation by any state or federal agency. Drugs must be shown to be “safe and efﬁcacious” before being approved by the FDA. The safety of food products is regulated by both State and Federal agencies. Most alternative cancer therapies are neither drugs nor food products and, therefore, skirt any regulatory issues. This includes providing a comprehensive list of ingredients on the product label. Go ahead….take a look at the label….you might see a list of the origin of the ingredients (e.g. ginger root, grape seed, noni juice, etc.) but you probably will not see a list of the actual chemicals in the product)
Anecdotal claims of efﬁcacy. Effective cancer treatments must undergo a rigorous series of clinical trials before being approved for use. Alternative therapies do not. Instead, individual claims of efﬁcacy are substituted. You do the math.
You don’t need a prescription to obtain the product. Duh!
All forms of cancer can be treated by the product. People would think I was crazy if I recommended that all cancers should be treated with the same chemotherapy agent. Yet, this is a hallmark of alternative therapies.
In the past, I dismissed most alternative therapies as harmless and did not discourage their use as long as they were not used as a substitute for potentially life-saving standard therapies. I’m not so sure about this posture anymore.
Some herbal products contain drugs, such as epinephrine, that may be harmful to patients with certain lung and heart conditions. Some products (chlorophyll) can cause severe diarrhea which complicates the administration of radiation and chemotherapy. Some products (Vitamins A, D, E, and K) are damaging to the liver when taken in high doses thereby complicating the metabolism of some chemotherapy agents.
Think twice about the chemicals going into your body. It is never a good time to load up on unknown, potentially harmful chemicals (whether these chemicals come from smoking a cigarette, eating a Twinkie or ingesting some weird herb from China).
Just check with me before putting one of these “alternative” products into your body. (Top of Page)
Diet And Bowels
As a general rule now is not the time to make drastic changes in your daily routine. You will be under enough emotional and physiologic stress while undergoing treatment of malignancy and you don’t need to compound it by choosing now to make drastic dietary changes, start a vigorous weight loss program, or stop smoking.
I would, however, recommend a few common sense dietary and bowel considerations:
If you are recuperating from a surgical procedure caloric intake is more important than the quality of your diet. You may not be able to tolerate large volumes of food so you are better off eating small amounts of high-caloric foods (junk food!). Yes, a piece of Godiva chocolate is better than a piece of fruit or a bowl of cottage cheese at this point in your life (this is not a good long-term plan, however).
Limit or eliminate difﬁcult-to-digest foods from your diet. This is especially true if you have had bowel resections, pelvic radiation therapy or are currently undergoing chemotherapy. These foods include corn (including popcorn), green beans, nuts, beef, gas-producers (beans, cabbage, etc), fruit skins, etc.
Drink plenty of liquids. At least 64 ounces daily (8 "normal-sized" glasses daily). No carbonated beverages (causes gas). Gatorade is a great choice because it is similar to some of the intravenous ﬂuids we give to hospitalized patients. If you don’t like the taste of Gatorade then drink water, fruit juice, coffee, tea. A glass of wine is not going to hurt a thing.
Take a multivitamin daily. Any of the multivitamin products like Centrum, One-a-Day, etc., are ﬁne. You really do not need to take any other supplements.
Drink 2 glasses of Metamucil or Citrucel daily (1 scoop in 8 ounces of water or fruit juice). Add one tablet of Senokot (available without a prescription) once or twice a day if necessary to produce nice, soft bowel movements.
Take Milk of Magnesia (MOM) if you do not have a good bowel movement at least every other day. Take a “swig” (between a “sip” and a “gulp”) of MOM directly from the bottle every 20 minutes until you start having bowel movements…..it always works! (Top of Page)
I am an Allopath. No, Allopathy is not a secret society or weird religion. Anyone with an “MD” behind his/her name belongs to a branch of medicine called Allopathy.
There are many branches of the Healing Arts. All have their rightful place in the management of emotional and physical pain.
Herbal therapy, Naturopathy, Acupuncture, Homeopathy, Chiropractic and even Religion have importance in various aspects of our health.
My younger brother is an Osteopath (a cross between Allopathy and Chiropractic). Osteopaths account for the majority of physicians in some parts of my home state of Iowa.
Allopathy is unique among the Healing Arts in that it is not based around any particular theory of disease. Rather, Allopathy scavenges the best of all other forms of the healing arts for models and treatments that are truly effective in treating illnesses. Allopathy then studies and reﬁnes any promising treatments and eventually incorporates them into clinical practice.
Non-Allopathic forms of medicine start with a theory of disease and then try to ﬁt treatments into that particular model. Allopathy looks ﬁrst at the disease process and then deﬁnes a theory of treatment.
Allopathy, therefore, uses the best of all of the Healing Arts and discards the approaches that don’t work. Examples include:
Taxol. One of the most important drugs used to treat breast and ovarian cancer comes from the bark of the Paciﬁc Ewe tree. Taxol is actually a reﬁned “natural” product. In fact, many of the drugs used to ﬁght cancers and other illnesses started as natural or herbal products.
TNS Units. Transcutaneous Neural Stimulator Units are used to treat chronic musculoskeletal pain. This is actually a reﬁned type of Acupuncture.
Vaccines. Many vaccines for viral and bacterial illnesses consist of dilute dead or live-attenuated forms of the disease-carrying organism. Homeopathic practitioners would be proud of us!
Physical Therapy. The comparison to Chiropractic is obvious. (Top of Page)
Before, during and for many years after treatment of your cancer you will have various blood tests, imaging studies, and physical examinations. All of these tests are needed to determine the extent of your cancer, evaluate the success of surgery, radiation, and chemotherapy, and provide long-term surveillance following all treatment.
You will have numerous blood tests for many years. Some tests, called “tumor markers” (CA-125, HCG, Inhibin) measure proteins produced by some cancers and, when measured repeatedly over many months, can tell us whether the number of cancer cells in your body are increasing or decreasing. Other tests tell us whether the number of red and white blood cells and platelets in your body are at an appropriate level to administer chemotherapy agents.
The most common routine imaging studies used to evaluate gynecologic malignancies include ultrasound and CT scans, MRI and PET scans.
Physical examination is centered on pelvic and abdominal examination. You will have many, many of these exams during and after treatment! Get used to having at least a pelvic exam every time you are seen by me.
Unfortunately, there is no such thing as a magical test that can determine whether or not the very last cancer cell in your body has been destroyed. All tests have a degree of error (both false-positive and false-negative results). For this reason, determination of the status of your cancer at any given point in time requires interpretation of all available testing data (blood tests, imaging studies, physical exam) and knowledge of the natural history and prior treatment of your cancer.
After completion of your chemotherapy (or if you did not require chemotherapy), you will need a physical exam every few months until the 2-3 year anniversary of your surgery. You will then need exams at 6-month intervals until the 5-year anniversary of your surgery. At each exam, you may need blood tests. You will also get imaging studies (such as CT scans) at regular intervals during the ﬁrst 2-3 years of follow-up. (Top of Page)
Infections – Contrary to popular belief, you will not be more susceptible to infections as you go through your chemotherapy. You don’t have to stay away from crowds or children.
During your chemotherapy, your white blood cell count may fall a little in between courses. We actually use this fall as an indication that you are being appropriately and aggressively treated. However, we do not want the drop to go too low or stay down too long. Your risk of infection, therefore, is not signiﬁcantly increased during your treatments.
This is different in patients being treated for leukemia, for instance. Leukemias are cancers of white blood cells. Since effective treatment requires the destruction of white blood cells, these patients are often susceptible to serious infections.
“Energy Level” – As you go through your chemotherapy don’t be surprised if your “energy level” is lower than normal. This is expected. You will probably need a little extra rest each day but almost everyone undergoing initial treatment is able to return to a normal work/activity level during chemotherapy.
Estrogen – There is no evidence that the prognosis of any gynecologic malignancy is adversely affected by estrogen replacement therapy. Most women diagnosed with a pelvic malignancy will end up being cured. Estrogen replacement therapy is important for your long-term health. Unless speciﬁcally told otherwise, you can take your estrogen replacement during and after your treatment. (Top of Page)
Pathologists are physicians that are very important in the treatment of cancer patients. They analyze blood tests, biopsies, and tissue samples removed at surgery. Your diagnosis cannot be made and your subsequent treatment planned without the active involvement of pathologists. You will never meet the pathologists involved in your care, but they are intricately involved in your care.
Tissue specimens are analyzed in two basic ways – the “Frozen Section” and the “Permanent Block”.
A frozen section is obtained at the time of surgery. The pathologist performs a “quick and dirty” analysis while the surgery continues. A report is usually available within 10 – 15 minutes.
As a cancer surgeon, I am interested in only very basic information from a frozen section. Usually, I just want to know if a piece of tissue is malignant or benign. In fact, at times this is the only type of information that a frozen section can provide. But, again, at surgery I am not necessarily interested in more detailed information such as the grade or histologic subtype. Although detailed information is invaluable in designing a treatment plan at a later date, it is not necessary at the time of surgery to determine the extent or type of procedure that needs to be performed.
Biopsies and tissues removed at surgery are always submitted for a permanent block analysis. This more detailed analysis takes 2 – 3 days to perform but provides extensive and detailed information about the tissue being studied. We always await this ﬁnal specimen analysis before making major decisions about prognosis and treatment.
During the few days that the permanent sections are being made and analyzed by the pathologist you and your family will, undoubtedly, be on “pins and needles”. This process cannot be sped up. I actually prefer that the pathologist take his/her time at this point and provide me with the most accurate and detailed information possible.
When a pathologist looks under a microscope at a specimen of human tissue, he/she is actually evaluating how the different shapes and colors of cells relate to one another. The pathologist then has to project his/her interpretation of this two-dimensional collage to a living 3-dimensional human being. What an amazing feat!
Much of what is seen under the microscope can be described in objective terms. However, a large part of histologic interpretation is quite subjective. My father, a Pathologist, described this aspect of his profession using an analogy. Imagine a museum tour group is looking at a painting by Picasso. They would all “see” the same painting. There would also be as many interpretations of what they “saw” as there were people in the tour group!
Suppose the same tour group analyzed a photograph of the Three Stooges. It is safe to say that all members of the group would agree not only in what they observed but also in its interpretation!
Most microscopic diagnoses are straightforward with essentially no expected inter-observer variation (the Three Stooges). Every once in a while a microscopic diagnosis is more challenging and opinions are need from more than one pathologist in order to come to an agreement on some at times rather subtle ﬁndings (Picasso).
If more analysis of a tissue specimen is required, we will often have several different groups of pathologists render an opinion. This, of course, takes additional time – sometimes several weeks. But, as noted above, as an oncologist I would prefer that the pathologist take as much time as needed to give the information I need. (Top of Page)
Laboratory and Clinical research is extremely important in developing newer and more effective means of treating gynecologic cancers.
Human studies of a new cancer drug are always preceded by years of laboratory and animal research. If it shows promise, the new drug will enter a series of human clinical studies.
The ﬁrst type of study (Phase 1) is meant to determine only whether the toxicity proﬁle of the drug is acceptable. Because a Phase 1 study is not meant to determine efﬁcacy, only patients who have a very short expected survival are entered into this type of study. In the large sense, Phase 1 studies are not only necessary but are ethically required so that drugs with intolerable side effects are “weeded out” early in the process. In this way, the number of patients exposed to drugs with more risk than beneﬁt is minimized. Obviously, patients who enter Phase 1 studies are truly unselﬁsh, altruistic individuals.
As physicians, however, our duty is to the individual patient we are currently treating. You can see the ethical dilemma that develops.
Phase 2 studies are the ﬁrst attempt to determine the efﬁcacy of a drug that has already passed through a Phase 1 protocol. This type of study is usually designed to determine the appropriate dose, treatment interval, interaction with other administered drugs, etc. Many drugs are studied in Phase 2 trials for virtually every cancer at many different centers at any given time. Some of these drugs have the potential to improve cure rates and survival. Entering such a study potentially allows a patient to receive a newer treatment years before it is available to the general public.
Phase 3 studies compare a new treatment that has already passed through both Phase 1 and Phase 2 trials to the current standard treatment for the given cancer being studied. In order to be considered for a Phase 3 trial a new treatment must be considered to have a very real likelihood of having better, not just equivalent, effectiveness to the current standard therapy.
Current standard therapies for most gynecologic malignancies are quite effective. Phase 3 studies are, therefore, rather uncommonly performed. In some cancers (e.g. gestational choriocarcinoma) Phase 3 studies have actually been suspended because the currently used standard chemotherapy is almost 100% effective! At any given time we have a number of Phase 2 and 3 studies open to patients in our practice. (Top of Page)
You’ve been diagnosed with cancer. After the initial shock, you may go through a period of disbelief (“They must have mixed up the biopsy with someone else’s!”). Eventually, you will reach a point of acceptance. You will understand that treating your cancer is going to be hard work, maybe the hardest work you’ve ever had to perform. But, after all, you’ve been a hard worker your whole life! You’ve never gotten something for nothing! By golly, you’re going to beat this, too!
Prior to reaching a point of acceptance, however, most people will pass through a period of confusion and even anger (“I never did anything wrong, I’ve taken care of myself, I don’t deserve this!”). You may ﬁnd yourself upset with God for “giving” you this burden. You may lash out at those closest to you, your spouse or children (“You can’t understand what I’m going through!).
Your anger almost certainly will be directed toward the medical system at some point. Inevitably you’ll be upset that your HMO didn’t “move fast enough”, or your insurance company denied payment of a bill, etc. You’ll ﬁnd reasons to get mad at the hospital because you spent too much time waiting in the Registration Area or maybe your hospital room was too hot at night, etc.
You will almost certainly get upset with your doctors and nurses;
. “The nurses take too long to get to my room when I ring my bell!”
. “I never get any sleep because nurses are always taking my blood pressure!”
. “The nurse had to stick me 5 times to get blood from my arm!”
. “The doctor was 30 minutes late for my appointment!”
. “The doctor isn’t going to do my surgery for 2 weeks!”
Yes, being upset and sometimes even angry is a natural part of being diagnosed with cancer. But you must remind yourself that these feelings are negative, wasteful and completely unhelpful in going through all of this. You can’t avoid going through an “anger” period but you can try to make it as short as possible. If you take a good look at why you are upset about something you will usually see that your emotions are misplaced.
You may disagree but I doubt that God “gave” you this cancer because He is mad at you. I like to think of God as a pretty nice guy. I imagine that He’s actually quite concerned about you and wants to help you through this as much as anyone. I’m told that He is a good listener if you take the time to talk to Him.
Of course, your HMO and insurance company never live up to your expectations. But you were probably quite happy with the (generally) low premiums you paid every month to have access to the best health system ever seen in history. In our practice we will care for any patient with cancer regardless of ability to pay. I feel a deep obligation to our profession and the generations of doctors that preceded us. We will always care for you despite any shenanigans pulled by your HMO/Insurance company. It’s how we sleep well at night. If you’re unhappy with your HMO just let us know – we know whom to call and we know how to make things move! If you’re upset with a bill then just let us know. We know how to work with your insurance company.
Do you really want to get mad at your doctors and nurses? Do you really want to get upset with the very people who are directly responsible for your comfort, possibly for your life? Think about it.
That nurse may take a few minutes to answer your bell because she is administering medicine to another patient, discussing a case with a doctor, or trying to calm the apprehensions of the patient in the next room. Believe me, she is not sitting around eating Bon-Bons!
That nurse isn’t coming into your room in the middle of the night to wake you up for the fun of it. She’s there to make sure you are safe.
Drawing blood from a vein in your arm is sometimes difﬁcult and takes several “sticks”. I should know…I started my career as a lab tech working for my father, a Pathologist. I learned how to draw blood when I was 15 years old (I guess you could get away with that in a small town in Iowa back in the 1960s!). Lab Technicians and Nurses must now pass a special training course before being allowed to draw blood. It still isn’t easy in many people! Many of the tests and procedures you will need are uncomfortable. Get used to it. Is there any other goal in your life that doesn’t require some pain and sacriﬁce along the way? Those of you who ski understand that “catching an edge” and “wiping out” hurts! But “pushing it” is the only way you’ll become a better skier. You still ski, don’t you?
Maybe the doctor was late for your appointment because he was unexpectedly delayed in surgery, or maybe he had to spend a little extra time on the phone speaking with a distraught spouse. All of us in Orange County are busy – we’ve got places to go, people to see and things to do. We don’t like to wait! However, you will come to realize that my office staff and I will always give you as much attention and time as you and your family require – just remember that someone else will probably need to wait for a little if that is the case. Come prepared to your ofﬁce appointments – bring a book or some ofﬁce work! You husbands out there can take a little time off from work to be with your wife during these visits. Heck, if you get done a little early you can take her out for lunch! I’ll recommend a good nearby restaurant if you ask.
When you get a new diagnosis and surgery is required there is a natural feeling that you’ve got a “time-bomb” somewhere in your body and it’s got to be removed as soon as possible. Well, it’s true that there is no beneﬁt to you in delaying your surgery for cancer, however, despite what you may feel; surgery in this situation is never an “emergency”. There is much to do before we can simply wheel you into an operating room. We will need to get written approval from your HMO or insurance company before we can schedule surgery. You will need to get blood tests and maybe an EKG and chest X-ray. You may need to complete a bowel prep. Most importantly we will need to ﬁnd operating room time to perform your surgery (easier said than done!). We will get your surgery done and your treatment initiated promptly and safely (promise).
Yes, it is natural to get angry about a new diagnosis of cancer. Getting upset with those who love you or those trying to help you is quite counter-productive even as it is understandable.
There are exceptions –
If you do need to direct a little anger at someone else I would ask that you consider my ofﬁce staff as being off-limits.
My ofﬁce staff is a collection of very special women, some of whom have been part of our practice for over 20 years. Without exception, these are hard-working, dedicated individuals who love the satisfaction of caring for women with gynecologic malignancies. They are very good at what they do! You will get to know them all quite intimately as time goes by.
You will be confused, upset, and hurt (at least initially). You cannot avoid it. Just don’t let these feelings overtake you. Talk to us about how you are dealing with your emotions. We are good listeners. (Top of Page)
My grandfather, a general surgeon, began practice in Kansas during the Great Depression in the early part of the 20th century. There were no health insurance companies at that time so patients paid him in cash or barter. One patient paid for her surgery by baking him a German chocolate cake every year on the anniversary of her procedure….for 23 years!
My, how things have changed!
PPO, HMO, Medicare, Part B, CalOptima, Pre-Approval, Denials, Deductible, Out-of-Network, …. this is the reality today. Confusing to you and confusing to me!
No one is happy with the increasing cost and complexity of the payment structure in American medicine. This includes me and my staff. “Financial toxicity” is a well-recognized side effect of cancer care. Serious discussions are currently being held among national physician organizations and governmental agencies to address the cost of life-saving, modern cancer treatments.
Financial stress, just like emotional and physical stress, can get in the way of your treatment. My staff and I will always care for you despite any shenanigans by your insurance company or your ability to pay…..that is a promise. Unfortunately, I have little to no impact on charges you receive from hospitals, pharmacies, laboratories, etc. So, here are some suggestions I can give you to, hopefully, keep your frustration level at a minimum:
Save a copy of every bill you get from any source. Categorize your bills for easy retrieval (e.g., Hospital, Radiology, Pharmacy, etc.). File your bills by source and date…this will make it easier to find disputed bills in the future.
Check every bill carefully. Billing services are staffed by well-meaning people, but people can make mistakes. Accidental double billing or overbilling can occur just like in any business.
If you have a question about a bill it is best to address the issue immediately. Phone or email the insurance company or billing agency and document the conversation and/or save the email chain. I have known patients who have gone as far as recording every phone conversation with billing agency representatives.
There is a certain amount of inertia in the medical billing business…it’s unavoidable. After all, we are talking about huge bureacracies in large insurance companies, hospital conglomerates and the government. If your billing issue is not resolved immediately don’t give up…be persistent. If you do not get a timely return phone call or email from one of these entities don’t get frustrated…just document the poor response to your inquiry and call/email again.(Top of Page)