Every Cancer Patient’s Journey is Different
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 also want to take a look at:
Jeff Johnson’s The Top 10 Things I Wish Everyone Knew About Having Cancer
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
What Do You Call Yourself? Warrior, Fighter, Patient, Victim?
Loving, Supporting, and Caring for the Cancer Patient
A Survivor’s Guide to Speaking with Cancer Patients
The Good That Can Come When We Stop Seeing Cancer as a Battle to Win or Lose
What Cancer Takes Away: When I Got Sick, I Warned My Friends: Don’t Try To Make Me Stop Thinking About Death.
Here’s an interesting article about the problem of crowdfunding care for unproven medical treatments
Information for Cancer Patients
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. They are relatively inexpensive. Often used to visualize injuries to arms and legs.
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. It’s good for visualizing fluid filled cavities such as the womb (hence its use in pregnant women to see the developing fetus), the heart, and the gallbladder.
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. However, it does not do a good job at seeing inside air filled cavities, such as the lungs. It is expensive and time consuming. Some people don’t like to get MRI exams because they get claustrophobic inside the MRI machine.
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. The dosage of X-rays from a CT scan is much, much greater than from a single X-ray. It can give 70 to 200 times as much radiation as a chest X-ray. It is also significantly more expensive than an X-ray.
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. PET scans are also very expensive.
Note: PET scans are often done as part of the initial workup of newly diagnosed HPV+ head and neck cancer patients, where they can show how far the disease has spread. However, they have also been done as part of follow up surveillance for patients post-treatment. A study was done to determine if this was equally valuable: Corpman, D.W. et al Posttreatment surveillance PET/CT for HPV‐associated oropharyngeal cancer. Head and Neck 41, 2, 456-462 (2019). Here are the results: “Surveillance PET/CT demonstrated 100% negative predictive value and sensitivity, 59.9% specificity, and 13.4% positive predictive value. Surveillance PET/CT led to 90 imaging studies and 31 biopsies; 91.1% and 77.4% were negative for recurrence, respectively. Surveillance PET/CT led to meaningful salvage therapy in 1.6% of cases. PET/CT‐detected recurrences did not have improved survival compared to clinically detected recurrences.” Their overall conclusion: “For HPV+OPSCC patients, surveillance PET/CTs frequently lead to unnecessary testing and rarely to meaningful disease salvage. They have no demonstrated survival benefit and should be interpreted cautiously to prevent patient harm.”
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 O 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. TO means there is no measurable 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. NO 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 O or 1. It says if the cancer has spread to organs and tissues in other parts of your body. A O means it hasn't, and a 1 means it has.
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. Another possible option is ELS - Endoscopic Laser Surgery, which is also generally restricted to early stage cancers, especially those found in the larynx. With laser surgery the cancer is either vaporized with the laser, or cut out. Both of these surgical techniques are often connected to a neck dissection procedure, where the surgeon removes lymph nodes in the neck and a pathologist examines them for signs of cancer to see if the tumor has spread there.
Note: a new second-generation surgical robot is in the process of being developed for TORS. It’s known as a single port system because all of the surgical tools enter the mouth through a single port, in contrast to the multiple ports found in the current DaVinci surgical robot. This has some significant practical advantages, which you can read about here.
Another option is a combination of immunotherapy treatment followed by robotic surgery. The idea is to use the immunotherapy to shrink the size of the tumor to one that can then be successfully removed by TORS. You can read more about this clinical trials approach here.
Below is a look at the general standard of treatment, which is combination chemotherapy and radiation. After reading this section, you may want to look below for the section Dose De-escalation Therapy for HPV+ Oral Cancers
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. Some chemotherapy drugs are designed to be used concurrently with radiation treatment, which increases the effectiveness of both agents. One example of this is cisplatin and radiation therapy for treating head and neck cancers.
Radiation. This is often used, especially in head and neck cancers. There are actually two types of radiation approaches used:
External beam therapy (EBT): a method for delivering a beam of high-energy x-rays to the location of the tumor. It is sometimes referred to as photon therapy. Some patients, and in areas where it is available, will be offered proton beam therapy, a different type of radiation. The idea behind proton beam therapy is that there will be less damage to the surrounding tissues, resulting in faster and/or better recovery, with less damage to the surrounding tissue. Whether or not this is truly advantageous in terms of overall better patient outcomes (e.g. improved survival) has not yet been determined. You can read about it’s advantages and disadvantages here. Note: many insurance plans do not cover proton beam therapy, considering it still to be experimental. Proton beam therapy is significantly more expensive than standard X-ray (i.e. external beam) therapy because the machines are much larger and more expensive to build and run.
Here are a couple of studies you can review with your doctor if you are considering proton beam therapy.
References: Baumman, B.C. et al Comparative Effectiveness of Proton vs Photon Therapy as Part of Concurrent Chemoradiotherapy for Locally Advanced Cancer. JAMA Oncol. 2020;6(2):237-246. doi:10.1001/jamaoncol.2019.4889 FREE download.
Also look at Frank, S.J. et al Comparing Intensity-Modulated Proton Therapy With Intensity-Modulated Photon Therapy for Oropharyngeal Cancer: The Journey From Clinical Trial Concept to Activation. Seminars in Radiation Oncology Volume 28, Issue 2, April 2018, Pages 108-113. FREE download.
The radiation beam is generated outside the patient (usually by a linear accelerator for photon/x-ray and a cyclotron or synchrotron for proton beam) and is targeted at the tumor site. These radiation beams can destroy the cancer cells, and conformal treatment plans allow the surrounding normal tissues to be spared.
Another option is intensity-modulated radiation therapy (IMRT): an advanced mode of high-precision radiotherapy that utilizes computer-controlled x-ray accelerators to deliver precise radiation doses to a malignant tumor or specific areas within the tumor. The radiation dose is designed to conform to the three-dimensional (3-D) shape of the tumor by modulating—or controlling—the intensity of the radiation beam to focus a higher radiation dose to the tumor while minimizing radiation exposure to healthy cells.
Another potentially important development is something known as an MRI-Linac, or an MRI linear accelerator. This is not a new type of radiation machine. It’s an upgrade to the linear accelerator, a longtime workhorse of cancer care that hits a patient’s tumors with radiation. The MRI-Linac merges that machine with its other namesake, a magnetic resonance imaging scanner, or MRI. The result is a machine that aims to treat cancer far more precisely than the tools widely used for years. It’s meant to image the tumor better in real time. That’s especially important when hitting a tumor with radiation. Everything inside the body is constantly on the move — organs, tissues, and even tumors. A tumor can shift an inch with just a deep breath. That’s made radiation therapy — which beams high-energy rays at a tumor — a challenging business. The MRI-Linac is designed to tamp down on those toxic effects by giving providers a way to watch where radiation is hitting in real time and make modifications. The MRI-Linac has a screen that shows patients their tumor and the radiation area. It looks like two circles of a Venn diagram, one the tumor and one the radiation. Providers have the patient hold their breath until the tumor almost completely overlaps with the radiation area. When they need to take a breath, the tumor might move out of that radiation area — and the machine automatically knows to pause the radiation until the tumor is in the right spot again.
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. Merck first clinched an accelerated approval to use Keytruda in recurrent or metastatic cases in 2016, targeting patients whose disease progressed on or after platinum-based chemotherapy. On June 11, 2019, the FDA converted it into a full approval right at the end of a priority review period, and additionally stamped its OK on Keytruda as a frontline treatment for head and neck cancer. That covers both monotherapy (in patients whose tumor express PD-L1) and a combination with platinum and fluorouracil, or FU (whole population). In the Phase III KEYNOTE-048 clinical trial, Keytruda improved overall survival over the standard regimen comprising cetuximab and carboplatin or cisplatin plus FU. The hazard ratio was 0.78 (p=0.0171) for PD-L1 positive patients in the monotherapy group and 0.77 (p=0.0067) for the entire combo cohort. “Head and neck squamous cell carcinoma has historically presented many challenges to physicians and patients, including limited treatment options and physical and functional issues caused by the disease and its treatment,” said Jonathan Cheng, Merck’s VP of clinical research.
Immunotherapy, thought promising, also has a number of unusual side effects that can crop up. Check out this article New Drugs, New Side Effects: Complications of Cancer Immunotherapy from the National Cancer Institute that discusses some of these problems, and why they are difficult to predict.
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. One example of this is larotrectinib (brand name: Vitrakvi), a drug that targets specific genetic change in NTRK genes. This type of genetic change is uncommon, but does occur in a range of cancers, including head and neck cancer. Larotrectinib is approved as a treatment for head and neck cancer that is metastatic or cannot be removed with surgery and has worsened with other treatments. 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
Post Treatment Side Effects
Common side effects of radiation therapy include:
Skin problems. Some people will experience dryness, itching, blistering, or peeling. Skin problems usually go away a few weeks after treatment ends. If skin damage becomes a serious problem, your doctor may change your treatment plan.
Fatigue. Feeling tired or exhausted almost all the time. Your level of fatigue often depends on your treatment plan. For example, radiation therapy combined with chemotherapy may result in more fatigue.
Long-term side effects. Most side effects go away after treatment. But some continue, come back, or develop later. These are called late effects. One example is the development of a second cancer. This is a new type of cancer that develops because of the original cancer treatment. The risk of this late effect is low. And the risk is often smaller than the benefit of treating the primary, existing cancer.
Here’s a list of some of the specific problems you might encounter, organized by the treatment areas:
Head and neck
Dry mouth (also known as xerostomia) is caused by a reduction in the flow of saliva. Details on how this arises, and what you can do to combat it, can be found here. I also came across this analysis of whether or not acupuncture can provide some measure of relief from xerostomia (dry mouth), a lack of saliva production often seen in H&N cancer patients who have been treated with radiation. A critical look at the data in this study indicates that, unfortunately, acupuncture is NOT helpful in treating this. FYI. Here's the reference: https://respectfulinsolence.com/2019/12/16/acupuncture-xerostomia-spin-negative-study/
Anorexia and cachexia
Candida (thrush) infections
Mouth and gum sores
Stiffness in the jaw
A type of swelling called lymphedema
Tooth decay (dental caries)
Carotid artery stenosis
Chest area (in the case of HPV+ cancer, this would generally be to treat metastases)
Shortness of breath
Breast or nipple soreness
Cough, fever, and fullness of the chest, known as radiation pneumonitis. This happens between 2 weeks and 6 months after radiation therapy.
Radiation fibrosis, which causes permanent lung scars from untreated radiation pneumonitis. The radiation oncologist knows how to lower the risk of fibrosis.
Stomach and abdomen. Radiation therapy aimed at the stomach or abdomen may cause these side effects:
Nausea and vomiting
These symptoms will likely disappear after treatment. And your doctor can prescribe drugs to manage these side effects. Making changes to your diet may also reduce your discomfort.
Pelvis (covers anal cancer, penile cancer, and cervical, vaginal, and vulval cancers
Incontinence, which is when a person is not able to control his or her bladder
Additionally, men and woman may have different symptoms.
Potential side effects for men include:
Sexual problems, such as erectile dysfunction, which is the inability to get or maintain an erection
Lowered sperm counts and reduced sperm activity. This can occur from radiation therapy to the testes or prostate. And it may affect a man's ability to father a child. Learn about ways to preserve your fertility.
Changes in menstruation, such as having menstruation stop
Symptoms of menopause, such as vaginal itching, burning, and dryness
Infertility, which is the inability to conceive a child or maintain a pregnancy. This may occur if both ovaries receive radiation therapy. Learn about ways to preserve your fertility.
Radiation recall is a rash that looks like a severe sunburn. It is rare and happens when certain types of chemotherapy are given during or soon after external beam radiation therapy. The rash appears on the part of the body that received radiation. Symptoms may include redness, tenderness, swelling, wet sores, and peeling skin.
Typically, these side effects start within days or weeks of radiation therapy. But they can also appear months or years later. Doctors treat radiation recall with medications called corticosteroids. Rarely, you may wait until the skin heals before continuing chemotherapy.
Source: Side Effects of Radiation Therapy. Cancer.net
Dose De-escalation Therapy for HPV+ Oral Cancers
I’m not a doctor, and even if I was, the decision to try dose de-escalation therapy needs to be decided on a case by case basis. For those of you who want to dive deep into the arguments on both sides, check out this article, preferably with your doctor:
Wirth et al Point/Counterpoint: Do We De-escalate Treatment of HPV-Associated Oropharynx Cancer Now? And How? 2019 ASCO EDUCATIONAL BOOK https://doi.org/ 10.1200/EDBK_ 238315 FREE Download
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.