HPV Cancer Resources

If you’ve found your way to this page, I’m sorry that you received this awful news. It really sucks. You’re likely distraught. Worried. Panicked! I was. That’s completely natural. You’re about to embark on a journey that you didn’t ask to take, and it’s going to be a bumpy ride of indeterminate length that you can’t easily get off of. Your world may never be the same, but you are going to find the inner strength to navigate a way forward. Why? Because you have no choice but to do so. What you need to do is to figure out how to make this journey as smooth as possible, and yes, there are going to be obstacles on the road ahead. I can’t promise you a good outcome. No one can. But following some of the tips below may ease the burden of your journey.

Step One: Control What You Can Control
A cancer diagnosis can be devastating. You probably have a lot of questions and very few good answers. Your diagnosis has set off a cascade of emotions that you may not have experienced before. Are you feeling a sense of dread? Uncertain how this will affect now only you, but your family and friends? This is perfectly normal. You’re feeling unprepared for what lays ahead, but try not to let the fear control you. You are going to be able to find your way forward. When we face these big challenges, it's important to understand that the only thing we can really control 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 is not an easy undertaking, but you should strive to do so.

Step Two: Involve Friends, Family, and Neighbors If You Can
Bring a trusted friend or family member to appointments with you if possible. If not, ask your doctor(s) if you can record what they’re telling you so you can review it later. Most will say yes because they know you’re likely to be overwhelmed by the information being given to you. The person with you can help by taking notes and provide you with emotional support. They can also act as your advocate when you’re just not capable of advocating for yourself. Many of us have brains that stop listening when we hear scary words like “cancer,” “surgery,” “chemotherapy,” or “survival rates.” This is natural, and you may not even realize this is even happening. That’s why it’s good to have someone else there to take notes and help you maintain your focus.

Step Three: Find A Place to Get Treated
Studies have shown that the best outcomes are associated with being treated by doctors who see lots of patients every year who are just like you. Put another way, in fighting cancer, experience and where you get treated matters. This means that the best place to seek treatment is generally a clinical cancer center, not your community hospital. This is due in part to the fact that certain treatments, such as robotic surgery (TORS), are not likely to be available to patients at community hospitals. There are multiple studies that support this idea. For more details, look at FAQ 10 here. If you can work this out, you will have a better chance at a successful treatment, although it may be hard to relocate in order to do this. You can learn about financial resources that might help you to do this on my Financial Help page. For many people it's simply not possible to travel for treatment for financial and/or logistical reasons. A key point for all to remember no matter where you get treated: it's important to get started on your treatment plan as soon as you can. Don' hesitate to advocate for yourself no matter where you get treated.

Step Four: Develop A Plan
You want to be on the same wavelength as your doctor if possible. When fighting a serious disease such as cancer, where you get treated makes a big difference. Your treatment is going to be all about communication and trust. If you’re not connecting through both of these channels, give serious consideration to changing doctors if it’s possible. This is also one of the reasons for seeking a second opinion at the outset if you can. It’s unlikely that you’re going to know as much as your doctor about what might be the best treatment for you. That’s not to say that you shouldn’t ask loads of questions, or push back if you feel you’re either not getting a straight answer, or not understanding what you’re being told. If that happens, simply ask your doctor to try and explain it in a different way. Ideally, your treatment plan should be a partnership, and you should be included in any and all discussions. These include discussions where you might decide to forego treatment if you feel that the treatment is simply ruining your quality of life. It’s your life, and while you don’t need to drive the discussion, you need to make clear to your doctors what your wishes are, and if you want to stop treatment or possibly explore other options (e.g. clinical trials).

Step Five: Focus On the Positive
Admittedly, this is a tough thing to do, and something you may struggle with. Try to have a positive mindset along your journey. One thing they don’t tell you about getting a cancer diagnosis: handling the mental stress and strain may actually be the hardest part. Look for ways to lemons into lemonade if you can. Maybe your diagnosis will bring you closer to others. Or give you time to reflect on what are, and what aren’t, the most important things in your life. Seize on life’s little victories as you make your way down the path. Do this by seeking out any positives that you can find, even if you need to look mighty hard. No doubt problems will crop up along the way, but try not to let them drag you down. Hope for the best in your treatment but prepare for the worse. While getting a cancer diagnosis is terrible, that’s not a reason to throw in the towel. Millions of cancer survivors would agree with me on that point. Keep in mind that the five-year survival rate (a standard measure of cancer treatment effectiveness) for HPV-caused throat cancers is in the range of 90 to 95 percent, which is excellent. Try to keep your eyes on this prize.

Step Six: Sidestep Stigma
If you have an HPV-caused cancer, don’t waste your time trying to figure out how you got this sexually transmitted virus. About 90% of men and women will acquire an HPV infection during their lifetimes; there’s no shame associated with this. It’s a medical issue, not a social or sexual one. Most people have immune systems that are able to fight the virus off, but a few unlucky ones will not and the virus will lead to cancer. This process can take decades, and it doesn’t matter who may have given you the virus. It’s highly unlikely they knew they were infected (infections generate no symptoms), so don’t think ill of them. Unless you’ve only had one intimate partner, there’s simply no way to know who passed the virus on to you.

Step Seven: Forgive Those Who Don’t Step Up
Forgive partners and friends who have not stepped up to help or support you. Learn to ignore negative feelings towards those who don’t respond to your cancer diagnosis in the way that you wish they did. It’s not that they don’t care about you, but they may be worried about upsetting you by not saying the right thing when talking with you. Or maybe they have many other things on their plates. For those of you who worry about not knowing what to say when a loved one is diagnosed with cancer, all you need do is say that you’re sorry to hear the news and ask if you can be of any help. Give a hug, wipe a tear, bring over a cooked meal, or just be there to listen. And if you offer to help, please follow through on your offer. Be sensitive to the fact that many people want to be treated exactly the same as they were before the diagnosis. This doesn’t mean they’re in denial; it’s just their preference as to how they’re going to cope with the situation. Do your best to honor their wishes.

Step Eight: Share Your Story
By sharing your story, you’ll likely hear similar tales from friends and acquaintances. Fighting cancer isn’t a battle you want to go in to alone. Join a local support group, or find one that fits your situation on social media. Stories reinforce our connections, even if we’re all members of a club we never wished to belong to. Hearing stories from other patients let me know that others were getting on with their lives as best they could, even with cancer’s shadow hovering over them. Knowing that many others have survived their cancer diagnoses should give you great hope that your treatment will also be successful.