Rare Cancer Guide – A Concise Summary

Not all rare cancers have strange, unfamiliar names such as hair cell leukemia. Brain tumors, cancer of the liver and ovaries are all considered rare cancers.A cancer is considered rare if it is diagnosed in less than 15 people per 100,000 each year. This comes out to a total of about 40,000 cases per year in the US. For example, ovarian cancer occurs in about 21,000 women each year, which means it is classified as rare.Most rare forms of cancer in adults are grouped together in a larger classification. For example, leukemia is a general classification of several rare types of cancers that occur in the blood.The common cancers such as lung, breast, prostate, and colon cancer attract much more attention and get much more research funding than the rare types of cancer. Of course this makes sense because so many more people are affected by the common cancers.However, the common cancers may be caused by many different factors – only one of which may be a genetic predisposition. Many of the rare forms of cancer can’t be easily linked to environmental and other factors. Rare cancer research may be able to help scientists unlock the genetic codes which explain how humans get cancer.Getting Clinical Care For Patients With A Rare CancerThe problem with a rare form of cancer is finding a physician who is familiar with its diagnosis and treatment. Because these cancers don’t happen as much as the common cancers, most physicians don’t have experience in diagnosing and treating these cancers.In order to get appropriate treatment for a rare form of cancer, you may have to continually ask your oncologist for answers. You may have to learn how to do the research yourself and even travel to see other doctors who specialize in an area of research similar to your cancer. Don’t be surprised if the medical advice you get seems conflicting. Because these cancers are rare and the research may be limited, the science behind the treatments may vary widely.Don’t worry about offending your doctor by asking for a second opinion. Remember these cancers are rare, and most physicians will have little experience in dealing with them. It is OK to ask for a second opinion. Some insurance companies may even require a second opinion in the diagnosis of a rare cancer.Seek a referral to a nearby “major” cancer treatment center because this will increase your chances of consulting with a specialist who is more familiar with your cancer type. Major cancer treatment centers are usually located in large metropolitan cities. You can usually find out more about these centers by researching online.Take copies of your medical records with you and bring someone along to help you take notes of the your conversations. You don’t want to miss any important details! Get someone you know that is skilled in Internet research to help you out with your online research studies.How To Find Support For Rare Cancer PatientsMany people diagnosed with a rare cancer often feel alienated and alone because there are so few people who share their same condition. It is difficult to find others who can relate emotionally to these people. Most cancer patients find some sort of consolation in discussing their condition with others who have the same condition. Rare cancer patients have a difficult time finding others who have the same condition.In these cases, cancer patients may be able to find a sense of community through online means such as support groups and cancer forums or blogs. Enlist the help of someone who is skilled in Internet research to find these support groups and show you how to interact with them online.Rare forms of cancer may actually be easier to treat because they may have a single molecular genetic flaw that is common to them. However, the difficulty lies in detecting these rare cancers early, properly diagnosing the rare cancer and then seeking the appropriate treatment. Because the cancer is rare, it may be difficult to move through these phases quickly enough.Consider a Clinical TrialWhen cancers grow in spite of treatments such as chemotherapy, radiation therapy and surgery, it may be time to consider other alternatives such as clinical trials. Cancer treatments must go through clinical trials before they are approved for use with the general population. You can choose to be a clinical trial patient and help advance cancer research to find a cure. If you choose to become a clinical trial patient you will have to sign waivers for risk. Weigh the risks carefully!Get Insurance GuidanceRare cancer patients often face insurance hurdles. Ask about insurance issues when you visit your oncologist. Some insurance plans require pre-approval before they will pay for a treatment of a rare cancer. Without such pre-approval you and your family may be stuck with a huge financial burden as well as the burden of care.Keep careful records of all interactions with your insurance company. Document the time, date, the representative(s) you spoke with and the results of the conversation. Request for written approvals and do as much communicating as you can in writing instead of verbally. Make audio or video recordings of your conversations (ask for permission first!) with insurance representatives.If you can’t afford treatments there may be patient assistance programs that can help you. These programs are often referred to as “compassionate care” programs. Ask about these with your oncologist. Be persistent and firm and don’t give up!

Lung Cancer – So Much Advice, So Little Time

As a current lung cancer survivor I continue to look for things that I believe might be helpful to anyone who has been diagnosed with lung cancer and the people that surround those individuals.I am constantly reading articles that were written by people who have opinions on what are the right and wrong ways to treat lung cancer and most of them have merit in the fact that they are usually backed up with some facts and testimonials but I have yet to read anything that would give me the confidence to say, “This will cure lung cancer.”I am confident that there are some very exciting things being researched out there that hopefully provide steps in the right direction like these tidbits of information that came from the ‘Cancer Update From Johns Hopkins’ that I received in late February.The Article begins by reminding us that we all have cancer cells lurking in our body being held in check by our immune systems. When our immune systems are strong and on the job, cancer cells are destroyed before the can multiply and form tumors. When a person is diagnosed with cancer it is an indication that there has been a breakdown in the defenses that your immune system provides. So what causes these breakdowns? Generally the arrival of cancer is an indication of multiple nutritional deficiencies. These could be due to genetic factors, environmental or food and lifestyle factors. A solid diet including supplements are key to keeping the immune system strong and functioning.Where Johns Hopkins is starting to change their thinking is in regards to chemotherapy and radiation as the only way to try to eliminate cancer.For those of you who are not familiar with the ‘Batman and Robin’ of cancer treatment, we will start with Chemotherapy.Chemotherapy involves poisoning the rapidly-growing cancer cells which is a good thing. The downside to chemotherapy, it knows no boundaries so it will destroy rapid-growing healthy cells just as quickly. Chemotherapy can also cause damage to the liver, kidneys, heart, lungs etc. There are various medications that you can take while undergoing chemotherapy and radiation treatment that will assist you in reclaiming things like red and white blood cells both crucial in your on going fight and survival, but these provide short term assistance.Radiation is a little more cut and dry in its effects it destroys cancer cells but also destroys healthy cells and can damage healthy tissue and organs. Radiation is the proverbial ‘Bull’ in the ‘china shop’ that is your body. I could write another three pages on the immediate effects of both on the human body, but I think that you get the point, both have the potential to do as much harm as good. As far as long term consequences, as a current lung cancer survivor of three years, I’m not sure what long term means. Sounds like another article for another time.Although both chemo and radiation can reduce the tumor size, when the body has too much toxic burden placed upon it by these two, the immune system can be compromised or destroyed altogether. This is what almost took my life in June of 07 when I found myself fighting off an infection with a very depleted immune system. The equivalent of fighting off a lion with a toothpick. Luckily for me, I ended up in intensive care before the various infections that were raging through me ended up putting an end to me.Chemo and radiation can also cause cancer cells to mutate and become resistant and difficult to destroy.With myself, surgery was not an option. There was a fear with my small cell lung cancer spreading quickly by exposing the cells, so surgery has not been an option at any time. I will tell you this much, the two of them together, Chemo combined with radiation, comprised the treatment that I received for small cell lung cancer, that treatment has been the driving force behind my fight and has helped me stay alive as long as I have.So here it is, John Hopkins thought is that an effective way to battle cancer is to starve the cancer cells by not making the foods that these cells need to multiply available to them.According to Johns Hopkins, depriving cancer cells of such things as sugar and sugar substitutes, table salt, milk, beef and pork as well as coffee, most tea and chocolate will have a huge positive impact in your fight. As far as water is concerned drink purified or filtered water no tap water or distilled.A diet consisting of 80% fresh vegetables and juice, whole grains, seed nuts and a little fruit combined with about 20% cooked food including beans would be ideal to move your body from the acidic breeding ground for cancer cells to a more alkaline and healthy environment. I cannot begin to tell you the benefits of fresh vegetable juice which will put live enzymes into your system within 15 minutes to help enhance the growth of healthy cells. I would like to add that the introduction of organic vegetables and food into my system have been a key component of my early cancer success. There are some very good cancer diet books at your local library that can help you get on the right track as well as the internet and your health provider who will also be able to answer your questions, point is do some research in the field of proper cancer diet and nutrition it could mean the difference between life and death.They also talk about the importance of the right supplements to help build up the immune system. I will tell you also to think about the importance of vitamin D to the health of the human body. Exercising daily which can be as simple as walking for a half hour a day and deep breathing to help get more oxygen to the cells since cancer cells cannot thrive in an oxygenated environment. Johns Hopkins also talks about keeping a positive attitude and trying to limit stress as keys to fighting a successful battle.I agree with all of the things that they are saying,(how often do you here that?) Let me ask you, “Why would a drastic change in your diet have such a dramatic effect on your health?” Do I really need to point this out to you?You might want to sit down while you read this next section if you are startled by things that are as obvious as the nose on your face.Had we paid more attention to begin with what we have been eating, we might not be a country that faces more health issues then the rest of the world. I am not just talking about cancer. I’m also talking about heart issues, high blood pressure, stroke, heart attack, diabetes and probably includes a number of things that you are now taking one of the hundreds of new medications that have been advertised non stop as of late. About that, did it ever occur to you as you were listening to the various side effects of everything being advertised that these new wonder drugs are more detrimental to your health then what ever it is that they are treating? Here’s another thought for you, how many new prescriptions will you eventually need to counteract the side effects of the first prescription that you never needed to begin with? I don’t want to get too far off subject, but the prescription craze that we have so easily fallen into coincides nicely with the amount of poor nutritional choices we make. We have become the “happy meal” society, surrounded by giant size portions of questionable products. We are far too busy to prepare our own meals so we eat fast food and pre made dinners packaged in plastic containers for our convenience. Problem being that we have no idea of the quality of the product and the container that we are heating by microwaves releases toxins into the food we eat when we heat it. I am not even going to discuss the various chemicals that have been in use to grow our food or the amount of toxins that we ply upon ourselves in an attempt to make our teeth whiter, our breath fresher our skin firmer. The amount of children being born with autism coupled with the steady increase in life altering diseases that we are inflicted with should be telling us something. The childhood obesity epidemic in this country should be telling us something.We could look back over the past few decades and look at the trail of personal destruction that we have opened ourselves up to if you want starting with banks foreclosing on our Nations family owned farms which I believe was the beginning of things all the way through the get rich quick decade where wealth on paper backed by exaggerated real estate values helped us all reach a little farther then we had any business reaching. Bringing us to today where unemployment and foreclosure have brought us back down to the Earth which we continue to destroy.Our view on the environment seems to follow suit with the rest of the way we choose to live. In denial. But again, I’ve strayed off my path. Back to what we were talking about, Johns Hopkins is right, for the cancer patient, our diet helps determine the outcome and overall success of our treatment. My point in case you missed it is that you should not wait for a life altering event to begin taking better care of yourself and taking responsibility for your health, which means paying attention to your eating habits as well as the quality of the food you eat. If you are responsible for a family you have an obligation to ensure that your family is being provided for properly. There is a very simple thought here, change your eating habits now by investing a little time, effort and thought up front and the return on that investment will be reduced health cost in the future and a longer, happier life for the people you are responsible for.I don’t know what the cure for cancer is hopefully someone will find it and make it available for anyone and everyone who needs it regardless of their financial status or health care plan. I do know this for a fact, lung cancer is the leading killer among all cancers. Diet, Chemotherapy, radiation and any other alternatives that are found to be of value should be explored when it comes to your treatment. As of today the only guaranteed treatment for surviving lung cancer that I know to be 100% effective is avoidance.Look at early detection testing, (Respiragene is the only one I know of) along with a strong smoking sensation program(many available programs out there) if you are a person who smokes. Review your diet and change your eating habits if need be to become a healthier person. A little exercise and some vitamins and maybe your immune system will remain at a level that allows you to avoid many life altering illnesses. Take the money you were going to spend on the next PlayStation game for your 6 year old and build him or her a sandbox or swing set instead. I believe that kids who are active and allowed to get their hands dirty reduce their chances for immediate and long term health issues.Sure there is no accounting for your genetic makeup which makes us all individuals and many times is the main catalyst in deciding which of us will be more susceptible to what. What I’m talking about is controlling the things in your life that you can control to lessen the likelihood of you needing to make life and death decisions regarding treatments. Who knows maybe we can change the path we are currently on and set a better example for generations to come.

Cancer Markers

There, I said it – the big C word. No one wants to hear it. You may have a family member who has it, be a survivor yourself, or know someone who has died from it.Since I have PBC (primary biliary cirrhosis) I am concerned about liver cancer. I have blood tests every so many months to keep an eye on my liver enzyme levels. There is a high incidence of liver cancer resulting from individuals who have had liver cirrhosis.You may have been curious how doctors can tell what stage of cancer a person has.Alpha-fetoprotein or AFP is a type of tumor marker which is used to diagnose cancer. These markers are used to determine which stage of cancer a patient has. Tumor markers are substances (mostly proteins) that are produced by the body or by the tumor itself in response to cancer.A high reading of certain proteins in a urine or blood sample may indicate a more aggressive cancer. Usually, the higher the resulting number of the marker, the higher the stage of cancer.Where symptoms suggest cancer in a patient, urine and blood samples are taken and submitted to a laboratory to be tested for cancer tumor marker levels.The results assist the physician in determining if a patient has cancer. They can also help diagnose the type of cancer the patient has.Cancer markers also are useful in determining the prognosis for the patient. They are also used to check to see if cancer has returned after remission.A biopsy is taken once a diagnosis of cancer has been made, and again tumor markers can help to determine the amount of cancer that is present in the patient’s body.Advanced cancer is indicated by higher tumor marker levels and the prognosis is less positive.With the help of cancer markers, a doctor can then determine the best treatment for the patient.Types of Cancer MarkersSome of the most common cancer markers (AFP) are used for diagnosing the following cancers:Liver
ProstateCancer research is ongoing in hopes to discover tumor markers for other types of cancers.Not just one tumor marker is used for all cancers, and not all cancers have tumor markers that work specifically for their diagnosis and treatment.Once cancer treatment has been started by a patient, they will need to have further testing with tumor markers to see if their particular treatment is working.If the tumor marker level declines, it usually is an indication that the current treatment is working.If the level increases or stays the same, the physician may try a different form of treatment.It is important that a certain amount of time has passed between cancer marker testing to give the treatment a chance to work on the tumor.Drawbacks of Cancer MarkersThere are only a few cancer markers that are able to find cancer in the early stages. In fact, there are certain noncancerous diseases which may contribute to a high tumor marker level.On occasion, cancer marker levels may not be elevated in a person who really has cancer. It is important that all tests are taken into consideration, including a complete physical examination, history of the patient, other laboratory tests and scans.Another drawback of testing with markers is that sometimes you get a false positive. There are a few factors that might contribute to an inaccurate lab test. Certain medications can alter the results of blood and urine tests, including Vitamin C, Naproxen Sodium or Tylenol. Some antibiotics can also affect the tests.False positives rates for cancer marker tests are usually 5 per cent. For other false positives or false negatives and their causes go to this link.Personally, I have lost a boss to cancer from smoking. It was not lung, but nose cancer. He was way too young to die, and was a very kind man. He was a chain smoker.I am glad that research continues on these types of markers to help in detecting cancer cells early on so a person has a better chance of surviving.If you have peculiar symptoms, breast changes, weight loss, unusual bleeding, unexplained fatigue, gnawing pain, indigestion, changes in lymph nodes, depression, or persistent cough or sore that will not heal, go to see your doctor. It is better to be tested early rather than wait until it is too late to treat it.