Merkel cell carcinoma (also known as neuroendocrine carcinoma of the skin) is a rare skin cancer. It usually is fast growing and can quickly spread to other parts of the body. As with other skin cancers, the number of cases is on the rise.

The first symptom is generally a fast-growing, painless bump on the skin which often appears on the face, head or neck but can occur anywhere on the body. It is usually shiny and may be flesh, red, blue or purple in color. If unchecked, the cancer can spread leading to swollen lymph glands, fatigue or pain. It is important to have any suspicious lesion checked out by a physician who may choose to remove or biopsy it for diagnosis.

It is not currently known what causes Merkel cell carcinoma but there are two leading theories. One is that the cancer arises directly from the Merkel cell which lies in the outmost layer of skin and the other is that certain immature skin stem cells become cancerous and develop features that resemble Merkel cells.

There are several risk factors for developing this type of cancer. As with all others, unprotected exposure to natural or artificial sunlight is one of the leading links. Others include age, having light or fair colored skin, a weakened immune system, or having a history of other types of skin cancers.

There are several treatments available. Several factors come in to play when your oncologist is coming up with a plan. The size and location of the lesion are important. Determining if the cancer has spread and if so, to what extent, is also vital. Small lesions that have not spread can generally be removed by surgically excising the lesion and a portion of the surrounding healthy skin. It may be advised to follow up the surgery with radiation to ensure that all cancer cells were removed or obliterated. Radiation can also be used to shrink the size of the tumor before surgery or as sole treatment in those who refuse surgery. For recurrent or metastasized Merkel cell, chemotherapy may be used.

All skin cancers should be under the care of an oncologist who can monitor and treat the lesions. Once skin cancer is present, the risk of developing more lesions or other types, increases so it is vital to be vigilant about sun protection and self-checking for new or changing lesions on the body.

To give you related information, I am sending you a copy of my Health Report “Medical Specialists”. Other readers who would like a copy should send a self-addressed, stamped number 10 envelope and $2 to Newsletter, PO Box 167, Wickliffe, OH 44092. Be sure to mention the title.

The mascot for these patients is the zebra because the disease is often misdiagnosed as irritable bowel syndrome, Crohn’s disease, and other bowel ailments. Because of the difficulty in getting a proper diagnosis, the motto is “If you think it’s a horse, think again”.

My husband’s case is unusual because his primary tumor was located around the descending aorta, not the liver, as is typical. The cancer has since spread to his lungs and bones. He is a valiant warrior and tries to live a normal life in spite of the devastating side effects. As far as we know there is no cure. Treatment is usually surgery to reduce the tumors or a drug called Sandostatin. My husband was given Interferon but had to stop because Medicare refused to pay since it is not an approved carcinoid cancer treatment.

We are fortunate to have a support group for this disease only 30 miles away. It has been a lifeline for both us as. Your readers may be interested in more information which can be found online at www.carcinoid.org.

DEAR READER:
Carcinoid cancer is a relatively complex condition. It involves slow growing tumors that can present in nearly any part of the body. The most common sites are the small intestine, appendix, rectum, and more.

Some tumors may even produce hormones that can cause a condition known as Carcinoid Syndrome. The primary symptom is carcinoid crisis that may involve flushing of the face and upper body, diarrhea and asthma-like wheezing.

Early detection and removal of all the tumor tissue may lead to a complete and permanent cure. However, because the tumors are so slow-growing, the onset of symptoms can precede diagnosis by several years. Some tumors may not even be noticed until they have spread and multiplied to painful levels.

There are a few treatment options including surgery, chemotherapy and cancer-specific medication known as somatostatin analogues given by injection. Radiotherapy is used only for tumors that have spread within the skeletal system.

Nutritious high protein diets, vitamin and mineral supplements, anti-diarrheal drugs and more can be used in conjunction with the above treatments, primarily as a means to reduce the severity and frequency of diarrhea.

The Carcinoid Cancer Foundation website has several helpful links as well as information about specialists who are diagnosing and treating Carcinoid patients. I recommend anyone interested in learning more about this condition or who thinks their prior diagnoses (of IBS, Crohn’s, etc.) may be incorrect (because of failure to respond to appropriate treatment), to speak with their physician or gastroenterologist.

Because you mentioned that Carcinoid cancer is often misdiagnosed as benign bowel conditions such as IBS, I am sending you copies of my Health Reports “Constipation and Diarrhea” and “Irritable Bowel Syndrome”. Other readers who would like copies should send a self-addressed, stamped number 10 envelope and $2 per report to Newsletter, PO Box 167, Wickliffe, OH 44092. Be sure to mention the title(s).

In 2004 I had a 0.5 centimeter high grade ductal carcinoma-in-situ removed. Upon three recommendations, I underwent 35 radiation treatments. Toward the end of the treatments I began to experience skin problems, namely burning, that continued to get worse — especially on completion of the radiation. At times my face, arms and upper body were extremely red and burned.

Everyone I consulted (dermatologist, oncologist, allergist, and more) said that the radiation had nothing to do with it. At that point, I couldn’t even walk in the sun or drive in a car without my arms and face burning. Nausea also become a problem.

Over time my condition has eased some but is still present. My eyebrows are beet red at times and burn. Occasionally burn spots will appear somewhere on my body for no reason at all.

I think this was the result of the radiation treatments because I have never had a skin problem before. I rarely used sunscreen and never burned no matter how long I was in the sun. To this day, however, I cannot get any physician to admit that the radiation was to blame.

I would also like to add that I am using Vicks on my skin and have seen some improvement. It works much better than the prescription cream I was given that only succeeded in burning my skin even more.

DEAR READER:
I don’t know what your physicians are talking about when they say that the radiation treatments you received are in no way related to your current skin condition. It is well known and documented that radiation can cause all sorts of problems, the most common of which is skin burning, tingling, scaling and more.

Unfortunately, the damage has already been done and there may be no options left for you. If you have had some success using Vicks to calm your skin, I recommend you continue it. You may also benefit by using topical balms, lotions, especially those that contain oatmeal or lanolin to keep your skin as hydrated as possible. Cool showers, rather than hot, followed immediately by application of lotion, cream or even baby oil may help.

I am not sure what other advice to give you other than traveling to visit physicians outside your area who may be more willing to listen and acknowledge you symptoms as a result of your cancer treatment.

I would like to add a final note. According to the United States National Institutes of Health National Cancer Institute, radiation therapy can cause dryness, peeling, blistering and redness to the skin at and near the treatment site. More information about treatment of affected areas can be found online at www.cancer.gov/cancertopics/radiation-therapy-and-you/. I urge you to print out the information and take it to your physicians and ask their opinions about your situation again, armed with the proof that radiation therapy can cause skin problems.

To date I still have a seroma which must be drained once a month and now my surgeon wants to do another surgery to see what is wrong. Have you ever heard of this problem?

DEAR READER:
A seroma is simply a build-up of fluid that usually follows surgery, especially mastectomy (breast removal). In most cases it disappears on its own. Some seromas may need to be drained, occasionally more than once.

In your case, your seroma has failed to be reabsorbed back into the body and continues to accumulate fluid which, I assume, is causing pain, discomfort or annoyance that necessitates its repeat drainage. It has been more than three years, making this a highly unusual case.

I suggest you take your surgeon’s advice and have the surgery to investigate what is causing the seroma to “stick around” for such a long period of time. He or she can then advise you what to do next to ensure that the seroma does not return.

To give you related information, I am sending you a copy of my Health Report “An Informed Approach to Surgery”. Other readers who would like a copy should send a self-addressed, stamped number 10 envelope and $2 to Newsletter, PO Box 167, Wickliffe, OH 44092. Be sure to mention the title.

My father suffered unnecessarily, I think, because he was misdiagnosed for several years with psoriasis when it was actually Sezary syndrome. Mycosis fungoides and Sezary syndrome are two forms of cutaneous T-cell lymphomas (cancer).

I believe my father died because a surgeon operated on his back without realizing how fragile his skin was from the Sezary syndrome. I think that a lack of information created a situation that could have been handled differently, and perhaps, my father would still be here.

I am sure that there are actual cases of psoriasis but I would hope that if there are patients with red, scaly, itchy skin that fails to respond to treatment, they would at least investigate these life threatening diseases.

DEAR READER:
Mycosis fungoides in a type lymphocyte cancer (lymphoma) that affects the skin. Lymphocytes are infection-fighting white blood cells. T-cell lymphocytes are specialized versions which help the body’s immune system. This is a relatively rare type of cancer with only about 1000 new cases diagnosed per year in the United States. It is more common in African-Americans than Caucasians and in more men than women. It usually presents at around age 50, but is occasionally seen in children and adolescents. The cause is unknown.

Mycosis fungoides ordinarily develops slowly over many years. In fact, because of non-specific laboratory testing of early lesions, it is often misdiagnosed as a benign ailment. The average time span between onset of symptoms and proper diagnosis is about six years.

In its early stages, the skin may become itchy and develop dry, dark patches, similar to those associated with psoriasis or eczema. As the disease progresses, tumors may develop. As more of the skin becomes affected, intense itching, scaling, thickening of the skin and more can develop. Skin infections can become more frequent due to cuts and tears as a result of scratching.

Mycosis fungoides is a chronic condition that, unless caught very early, is often fatal. Depending on the stage of disease at diagnosis, life expectancy can range from normal (for early cases) to as little at one year (for advanced cases). It is important to be under the care of an oncologist once properly diagnosed. For those who have been diagnosed with conditions such as eczema or psoriasis that fail to respond to appropriate medications, ask about further testing to determine if there is, in fact, a different cause.

Thank you for writing to remind me about this rare, but very serious skin cancer.

To give you related information, I am sending you a copy of my Health Report “Psoriasis and Eczema”. Other readers who would like a copy should send a self-addressed, stamped number 10 envelope and $2 to Newsletter, PO Box 167, Wickliffe, OH 44092. Be sure to mention the title.

I am a practicing gynecologist and do not order a routine CA125. This is a non-specific test that can generate abnormal results for a number of reasons, to include fibroids and endometriosis. If I referred each abnormality to my local oncologists, they would throw up their arms in dismay, having to sort out a plethora of possibilities in an attempt to determine the real cause for the elevated readings. This is an expensive process and would take precious hours.

I implore you to write a retraction.

DEAR DOCTOR: I am fully aware a CA125 is normally drawn prior to a patient beginning treatment for ovarian cancer to provide a marker for comparative purposes against future readings. The testing is also generally recommended because of a strong family history of ovarian cancer or because of questionable symptoms such as a change in bowel habits, fatigue, low back pain, loss of appetite, gastrointestinal upset, and more.

As you pointed out, abnormalities in the testing can occur for a number of reasons and, therefore, it may not be useful as a screening test for everyone. The early, unrecognized symptoms of ovarian cancer can be overlooked all too easily. In fact, some 20,000 American women are diagnosed with ovarian cancer every year.

After a given age, men are routinely screened for prostate cancer as part of their annual testing. This PSA test more often than not results in abnormal results that must then be sorted out by a urologist or oncologist. Does this seem fair that men are allowed to “waste” the time of medical personnel but women are not? Certainly not, in my opinion, but I guess I was being too cautious in recommending each woman include a CA125 as part of an annual test.

If I owe an apology to all oncologists for causing unnecessary investigation, then consider it done. However, I cannot stress too strongly that those women with a family history or questionable symptoms request the test. They can first apologize to their oncologist for all efforts in getting to the bottom of a benign condition but can then rest more easily knowing they have a clean bill of health.

A brief medical history is called for. In September 1995, at the age of 55 I was diagnosed with colo-rectal cancer and surgery was performed to remove the diseased areas. I had 31 radiation treatments and one year of chemotherapy. In August 1996 I was able to return to my teaching position. However, in February 1997, I developed an intestinal blockage due to the radiation treatments and needed surgery. Due to the effects of the surgery and radiation, I was forced to resign. I was diagnosed with radiation enteritis and am now classified as permanently disabled.

The long-term effects of the above treatments began to develop and a gradual loss of independence and freedom followed. I started having frequent, urgent and sudden bowel movements on a daily basis. I continue to have bouts of diarrhea and most frustratingly, I have episodes of fecal incontinence. I have been prescribed Asacol, Colozal, Rowasa, and Cortenema all with little or no relief. The symptoms I’ve described continue to be debilitating and almost paralyzing. I’m now reluctant to leave my house and if I do, it is for very brief periods of time. When doctor appointments are needed, they must always be scheduled late in the day and no food can be consumed until after I return home. I am forced to have people run many errands for me and must request other people to transport my wife to her appointments. Needless to say, attending church services and social gatherings are now an impossibility. In short, I’ve lost almost all independence and freedom of choice.

These many years of living in the way I’ve described have led to a few conclusions. Medical science may have saved my life but it certainly didn’t restore it. I never expected to be the person I was prior to the diagnosis and treatment of cancer, but I didn’t expect to be one step removed from becoming a shut-in either.

I now firmly believe that individuals in the various fields of medical science who develop treatments and therapies for diseases such as cancer also have an equal responsibility to develop ways to deal with the long-term effects of the treatments that are applied. Failure to do so almost gives one the impression they have become the “victim” of a cure, left to fend for themselves now that they are cancer free. I would like to see the treatment for the long-term effects of cancer therapies be as aggressive as the treatment for the disease itself. I wonder if cancer survivors who read about declining death rates for those diagnosed with cancer become curious about the quality of life that may result. Certainly, my experiences tell me that surviving cancer can come at a very high price.

I cannot predict your reaction to my letter and you may or may not offer a reply. That is your choice and I realize you are under no obligation. Nevertheless, I believe that experiences like mine should be made known not so much to be merely critical but to encourage the development of more refined and less debilitating treatments.

DEAR READER:
I have chosen to print your letter in its entirety because you have made many valid points.

As far as science has come in understanding and treating cancer and other serious conditions, it still has that much farther to go to develop treatments that are not as potentially harmful. You have experienced very serious side effects from your life saving procedures. I am not an oncologist and therefore cannot say if the severity of your problem is common as a result of your treatment. I hope it is not.

Physicians have a duty to explain the potential harmful effects of any given treatment as well as the benefits. This simple step can help a patient decide if the risks outweigh the benefits and if they are willing to take that gamble. Thankfully, most treatments are benign and side effects are minimal but as the disease becomes more severe, so do the treatments.

I urge you to speak to your oncologist or gastroenterologist about any new therapies or procedures that may be available to combat the side effects of your radiation and chemotherapy. He or she should be up-to-date on the latest breakthroughs and treatments. For example, you might consider surgical removal of the colon followed by a colostomy bag. This will allow you to function in public in a normal fashion and those around you will be completely unaware.

To give you related information, I am sending you a copy of my Health Report “Constipation and Diarrhea”. Other readers who would like a copy should send a self-addressed, stamped number 10 envelope and $2 to Newsletter, PO Box 167, Wickliffe, OH 44092. Be sure to mention the title.

In 2002, as a 47-year-old, otherwise healthy woman, I was diagnosed with not only an ovarian tumor the size of a six month old fetus, but also a totally unrelated cancerous polyp in my uterus that was found DURING the hysterectomy.

Imagine my shock when my OB/GYN told me that PAP smears do not indicate either type of the cancers I had. I had thought I was fine since all my PAPs came back clear.

I beg you at least to mention this in your column as many thousands of women are still unaware and think they are totally safe by only having annual PAP smears.

I realize that no test is “fool-proof” but this is a very important tool in diagnosing and taking care of a silent but deadly killer of women of all ages. Men are given a PSA tests at annual exams to be sure their prostates are healthy but in this still sexist society, women are not afforded the same right. A lot of insurance companies still do not recognize it as the life saving tool it can be.

In the long run, having this simple blood draw done would save not only lives, but millions of dollars. If patients are diagnosed with cancer earlier, they may not have to go through an extensive surgery, and chemo, radiation and life long follow-ups may be kept to a minimum.

DEAR READER:
I am printing your letter because you make a valid and important point. Ladies, please, ask your physicians to order this blood test during your annual PAP smears as part of a comprehensive and preventive step toward reducing the risk of cancer-related death.

DEAR READER:
Normal prostatic specific antigen (PSA) readings are from 0-4. Your husband’s reading was high. Having said that, prostate cancer affects about one in six men in the United States and the incidence increases with age.

Prostatitis is inflammation of the gland. Forms of the condition are either bacterial, non-bacterial, or inflammatory. Any organism that can cause a urinary tract infection can also cause acute bacterial prostatitis. Trauma, obstruction, catheterization, cystoscopy or infection in another part of the body can result in bacterial prostatitis. So, your husband’s hospitalization could have come from a number of sources.

Armed with the elevated reading, your husband’s advanced age and the urinary tract infection, the surgeon was obviously leaning toward cancer. That was probably why he chose to perform the biopsy and recommended surgery. He was acting on the side of caution.
To be on the safe side, return to your husband’s primary care physician and request a referral to another urologist for a second opinion. If he or she feels the first urologist acted appropriately, you and your husband then have a decision to make. Does he want to undergo another biopsy? Is there pain involved? Is surgery safe at his age? You have a number of questions that need answering. Sit down for a frank discussion. You will then be in a better position to make an educated decision.

When I returned home I saw my physician who was concerned about my kidney at first. I asked for a referral to a specialist who ordered another CT scan. Again, it showed I had a mass on my kidney. I was told that it was under 4 cm so it was caught quite early.

My urologist doesn’t want to do anything about the kidney right now despite the fact he feels it is cancer. He says it may have been there a long time and that these things are usually slow growing. He appears to be more concerned with the blood clots in my lungs.

I am scheduled for a follow up CT scan in 90 days and am looking at surgery sometime this fall.

My concern is that if this is cancer, waiting is just giving it a chance to spread. I would like to have the cancer dealt with right now. My daughter is an RN and agrees with my urologist so I am not sure what to think. Can you help? Does the urologist’s approach seem right to you?

DEAR READER:
I am not a urologist but agree with him.

The blood clots in your lungs are the most serious problem you have. They are more likely to cause immediate problems or even death should they move.

Your kidney tumor on the other hand, was found incidentally; therefore, I assume it was not causing any symptoms. Without the blood clot testing you probably would not have even known you had a kidney tumor until it grew or spread causing symptoms. You are lucky that it was caught early.

Follow your urologist’s advice. Stay on the Coumadin.

To give you related information, I am sending you a copy of my Health Report “Kidney Disorders”. Other readers who would like a copy should send a self-addressed, stamped number 10 envelope and $2 to Newsletter, PO Box 167, Wickliffe, OH 44092. Be sure to mention the title.