HPV Cancer Resources

Helpful Information for Parents, Patients, Partners, and Providers

Helpful Information for Parents, Patients, Partners, and Providers

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Every Cancer Patient’s Journey is Different

Getting a cancer diagnosis is anything but easy. There’s a lot of fear and worry floating about, whether you’re dealing with this alone, or facing this with loved ones. Prognoses are uncertain. People expect that there are physical challenges ahead, with surgery, chemo, or radiation likely in the offing. One thing a lot of people don’t understand, however, is how the diagnosis is just as challenging mentally. Decisions will need to be made, accommodations put in place, financial burdens will need to be overcome. Uncertainty will reign supreme. You will learn the meaning of the term “scanxiety”, which refers to the anxiety cancer patients suffer while awaiting the results of their latest CT/MRI/PET scan. I’ve written about the 12 Lessons Learned from My Cancer Diagnosis, and you may find this information helpful. Or not. Despite the fact that you have gotten the same diagnosis of thousands of other patients, your path forward will be different from theirs. Part of this is because we all bring different life experiences into the doctors office with us. Another part is that the cancer cells themselves will be unique, like snowflakes. They will share many features with other cancer cells, but they will all be different at the level of their genes. Many cancer patients feel the burden of living up to some idealized image, that of the stoic patient who endures their treatments without complaint and somehow emerges from the ordeal changed for the better. That’s a lot to ask of someone. If you take that path, that’s great, but that is not a responsibility that you need to bear.

I reached out to several cancer patients following my diagnosis for reading suggestions, and the best one I got was Viktor E. Frankl’s Man’s Search for Meaning. It’s a memoir written by a Jewish psychiatrist who spent time in four Nazi concentration camps. His parents, brother, and pregnant wife were all killed. Every day he dealt with the greatest indignities imaginable, with a very reasonable possibility that it could easily be his last. What does this have to do with cancer? He ultimately figured out that, like cancer patients, he was unable to make the thing that was making his life terrible go away. This led to an understanding that when people face these challenges, the only thing we can really change is how we respond to them. You can’t cure cancer, but you can try to figure out a way to make the best of the situation. This, too, is not an easy undertaking, but you may find this book helpful.

You might alsowant to take a look at:
I’m Not The Perfect Cancer Survivor. But I’ve Learned to Live With That.
The Myth of Perfectionism
What Not to Say to a Cancer Patient
Loving, Supporting, and Caring for the Cancer Patient

Information for Cancer Patients

There’s a lot of information out there for cancer patients seeking details about their diagnosis. The info below is not meant to be in any way comprehensive, but is provided here simply to give some basic details about some of the more commonly used terms. As always, your doctor should be your first choice for getting information specific to your cancer.

Scans

There are five general types of “scans” that may be used in diagnosing your cancer. These are technologies that were developed to let doctors look inside the human body without cutting into it. Your doctor will choose which of these procedures is the most appropriate based on a number of criteria. Because each person’s treatment path and ultimate prognosis are often tied to the results of the various scans, many cancer patients develop “scanxiety” (i.e. scan anxiety) either during their scans, or while awaiting the results. These days many scan (and other medical test results) are sent directly to the patient via a patient portal as soon as they become available. My advice is to NOT look at your scan results in advance of going over them with your doctor. That’s because the descriptions often cannot be correctly interpreted without medical knowledge, and it’s easy for a patient to think that a particular phrase suggests something bad when it fact it does not. You’ll have to wait to discuss treatment options (based on the scan results) with your doctor until you meet in person, so I suggest going over the scan at the same time.

Here are some basic descriptions, but these techniques can be used in different ways depending on circumstances:

X-rays: An x-ray involves exposing a part of the body to a small dose of ionizing radiation to produce pictures of the inside of the body. X-rays are the oldest and most frequently used form of medical imaging.

Ultrasound: Ultrasound imaging (also called sonograms or sonography or ultrasound scanning) uses high-frequency sound waves to obtain images from inside the human body. Unlike x-ray radiography or CT scanning, there is no ionizing radiation exposure with sonography.

MRI: Magnetic resonance imaging (MRI) is an exam that uses a strong magnet to take pictures of internal organs and tissues. There is no ionizing radiation, as with X-rays or CT scans. The level of detail with MRI is extraordinary compared to any other imaging technique.

CT scan: A computed tomography (CT or CAT) scan allows doctors to see inside your body. It shows more detail than a regular X-ray. CT scanners use a narrow X-ray beam that circles around one part of your body. This provides a series of images from many different angles. A computer uses this information to create a cross-sectional picture. Like one piece in a loaf of bread, this two-dimensional (2D) scan shows a “slice” of the inside of your body. This process is repeated to produce a number of slices. The computer stacks these scans one on top of the other to create a three-dimensional (3D) image. This can give your doctor a better view of your organs, bones, or blood vessels.

PET scan: A positron emission tomography (PET) scan is an imaging test that uses a special dye containing radioactive tracers. These tracers are either swallowed, inhaled, or injected into a vein in your arm depending on what part of the body is being examined. Certain organs and tissues then absorb the tracer. The tracer will collect in areas of higher chemical activity, which is helpful because certain tissues of the body, and certain diseases, have a higher level of chemical activity. These areas of disease will show up as bright spots on the PET scan. Today, almost all PET scans are performed on instruments that are combined PET and CT scanners. The combined PET/CT scans provide images that pinpoint the anatomic location of abnormal metabolic activity within the body. The combined scans have been shown to provide more accurate diagnoses than the two scans performed separately.

Cancer Staging

From WebMD:
Most cancers that involve a tumor are staged in five broad groups. These are usually referred to with Roman numerals. Other kinds, like blood cancers, lymphoma, and brain cancer, have their own staging systems. But they all tell you how advanced the cancer is.

Stage 0 means there's no cancer, only abnormal cells with the potential to become cancer. This is also called carcinoma in situ.

Stage I means the cancer is small and only in one area. This is also called early-stage cancer.

Stage II and III mean the cancer is larger and has grown into nearby tissues or lymph nodes.

Stage IV means the cancer has spread to other parts of your body. It's also called advanced or metastatic cancer.

Another approach used by doctors to determine your overall cancer stage is the TNM system, short for tumor, node, and metastasis. Your doctor will measure each of these and give it a number or an "X" if a measurement can't be determined. The symbols are a bit different for each type of cancer, but this is generally what they mean:

Tumor (T): "T" followed by a number from 0-4 tells you how large the tumor is and sometimes where it's located. T0 means there is no measureable tumor. The higher the number, the bigger the tumor.

Node (N): "N" followed by a number from 0-3 tells you if the cancer has spread to your lymph nodes. These are glands that normally filter things like viruses and bacteria before they can infect other parts of your body. N0 means lymph nodes aren't involved. A higher number means the cancer is in more lymph nodes, farther away from the original tumor.

Metastasis (M): "M" is followed by either 0 or 1. It says if the cancer has spread to organs and tissues in other parts of your body. A 0 means it hasn't, and a 1 means it has.

Treatment Options

HPV-caused cancers are treated in the same way as other cancers are treated. Here are the methods used:

Surgery. Whether or not this is an option depends on a number of factors. It’s an option for all of the organs affected by HPV-caused cancers. In addition to regular surgery, some head and neck cancer patients with small oral tumors will be offered TORS - Trans Oral Robotic Surgery. A surgeon guides a surgical robot to remove the tumor by going in through the mouth. This procedure is much less invasive than the procedure it replaced, which often severely affected patients with head and neck cancers. It is often connected to a neck dissection procedure, where the surgeon examines lymph nodes in the neck to see if the tumor has spread there.

Chemotherapy. These are drugs that non-specifically attack dividing cells, which includes those in the tumor as well as other tissues in your body (e.g. hair follicles, intestinal linking, blood cell development). Many factors are involved in choosing a chemotherapy regimen; details can be found here.

Radiation. This is often used, especially in head and neck cancers. There are actually two types of radiation used. One is the standard type of X-ray radiation that has been employed for many years. Some patients, and in areas where it is available, will be offered proton beam therapy, a different type of radiation. The idea behind protein beam therapy is that there will be less damage to the surrounding tissues, resulting in faster and/or better recovery. Whether or not this is truly advantageous in terms of better patient outcomes has not yet been determined. You can read about it’s advantages and disadvantages here.

Immunotherapy. This is a technique that harnesses the body’s immune system to attack the tumor. It’s a relatively new technique, and is the subject of intense study and numerous clinical trials. There are currently two immunotherapy drugs approved for treating head and neck cancers, pembrolizumab (Keytruda®) and nivolumab (Opdivo®). Both belong to a class of drugs known as checkpoint inhibitors. You can learn about how they work here.

Precision medicine. In this approach, some type of agent (generally a small drug or an antibody) is directed at a protein that is important to the growth of the tumor. These types of drugs are used to treat a number of different types of cancer because they target key proteins that are involved in making cells cancerous across a wide range of tissues. In the case of HPV-caused cancers, scientists are working to develop drugs that target two viral proteins, E6 and E7, that are believed to be critically important to the process by which normal cells are transformed into cancer cells. There are currently no precision medicine drugs on the market directly targeted against HPV-caused tumors, although there are some in clinical trials.

I’m generally not a big fan of looking at survival rates for various cancers, because the numbers are simply averages, and you may do better or worse than the average. How you do with your treatments will depend a lot on what stage your cancer was at when it was found, how effective the treatments are, and how well you tolerate these treatments. There is a lot of inter-individual variability, and patients diagnosed with the same cancer type and staging can and do have very different outcomes. Some patients may be eligible to participate in a clinical trial, in which a new drug or treatment is tested. In addition, advances in the treatment of many cancers have been seen in recent years, rendering these survival numbers out of date and not relevant. If you must see this info, here’s a recent summary:
Five-year relative survival for human papillomavirus-associated cancer sites (2018) Rezzaghi et al Cancer 2018;124:203-211

MEDICAL DISCLAIMER

Just to be clear: I am NOT a doctor. The information contained in this website is NOT intended as a recommendation for the self management of health problems, medical conditions, or wellness. It is not intended to endorse or recommend any particular type of medical treatment, physician, or treatment facility. Should any reader have any health care related questions, I strongly suggest you call or consult your physician or healthcare provider before looking into other things on the internet. The information contained in this website should NOT be used by any reader to disregard medical and/or health related advice or provide a basis to delay consultation with a physician or a qualified healthcare provider. HPV Cancer Resources disclaims any liability based on information provided in this website.