My husband was diagnosed about a 15 months ago with STage 4, HPV, oral cancer, base of tongue and lymph nodes. He went through a month of triple chemo and then 7 weeks of brutal radiation. He did eventually get a PEG tube but otherwise did so incredibly well. I should note that he was in great shape before the treatments which I'm sure helped. He had very little nausea or stomach upset. His throat was uncomfortable but nothing like the nightmares I have read on this board and others. He didn't even use any pain meds. He never stopped being able to swallow or take in water but just couldn't eat because things "tasted too weird."

He is now eating pretty normally though his taste buds have not all returned. He has less saliva but doesn t even need medication anymore. He lost about 20 lbs which have stayed off but hes at a good weight. Hes back to exercising and his other healthy habits. He has had 2 ct scans so far every 3 months both negative. He otherwise seems completed 100% back to normal.

However, as a nurse, I know the odds. I feel like I am holding my breath. I read these boards when he was first diagnosed and had to stop because the fear of what might happen was causing such anxiety I couldn't function and I am the only breadwinner. Now I'm back for two reasons. I guess I want to know what the oncologists wont really talk about. Does anyone get through this disease 100% cured with no reoccurrence? I couldn't find any literature on this. I'm supposing that if people were cancer free they might not be posting here anymore. Any ways I am an anxious mess again not knowing what to expect...when will the shoe drop? Does anyone have any good reports?

Also my 82 yr old mom was just diagnosed yesterday with tonsil cancer. We are awaiting final diagnosis but her's is probably from smoking. She smoked for about 40 yrs but quit cold turkey...looks like this evil is coming back to haunt her. I know my mom will choose not to do any treatment so that also has me scared to death. I'm so stressed for both my mom and husband. Thanks for reading my post.

Hi, Lat -
Try googling: oropharyngeal cancer hpv alternate staging

The old-style staging is being revisited by some of the top researchers for hpv associated cancer. There is a recent paper by Dahlstrom you should be able to find that will probably make you feel better about your husband's prognosis though nobody can say 100% cured. Maybe you can dial down the fret level.

I'm sorry to hear about your mom - that is a tough diagnosis at 82. Even if you pretty sure she will refuse treatment, it wouldn't hurt to look into some of the immunotheray clinical trials.

Best wishes and don't be like me and get a massive RA flare from all the caregiving stress!
Maria

Welcome to OCF! You certainly have your hands full! No wonder you are stressed out about this, I cant imagine how hard it is to have 2 of your closest relatives have this horrible disease.

Most patients will get thru their OC treatments (some easier than others) move thru their recovery phase and go on to live happy, health long lives. Having a recurrance is not as common as you may think. After going thru such brutal treatments many patients (or caregivers) get anxious around scan times. This is completely normal to fear the worst after such a life changing event. Many patients and caregivers take anxiety meds to help them manage their fears. Talking with a therapist can do wonders to make it easier to handle.

Being a nurse you can probably have conversations with oncologists on a deeper level than the average patient or caregiver. Next time your husband goes for a check up, try asking the oncologist about these things. Im sure they can relate to you better than someone without a medical background.

Im very sorry to hear about your mother's diagnosis! Its extremely rare hearing about 2 members of a family having OC. Since your mother quit smoking, she is taking a positive step for her future. Her decision might just surprise you. I know treatments are not easy but some do get thru it easier than others. Ive noticed those who sail right thru are the ones who focus on their intake and have very minimal weight loss.

Being a caregiver is a tough job!!! Be kind to yourself and find some way to relax and get your mind off worrying, even if its just for a couple hours. It will help you manage all of this a little easier.

Best wishes!

Hi lat - congratulations to you and your husband for getting through the very tough treatment that so often comes along with any head and neck cancer diagnosis. As I've been told, and can attest to personally, being HPV+ is an advantage with this disease (versus the older and more traditional smoking-caused cancer). When I finished treatment nearly 7 years ago and asked my RO whether I was now in remission, she responded, "Oh no, you're cured."

So it is indeed possible. And although there's always a tiny voice in the back of one's mind reminding one of possibilties (nothing's ever 100% in life as we all know), I've basically stopped worrying about a recurrence.

I recommend reading some of the survivors' stories on the appropriate forum.

My thoughts are with you all, and especially with your mother. I know this must be very difficult for you and for her. Please keep us posted, and ask any questions that come up. We're here to help.

The odds are in your husbands favor! HPV positivity is the best prognostic measure we have so far in regards to head and neck cancer survival, as was mentioned. There are articles on this. Just recently, one small study about scanning and physical exams finding most HPV positive oropharyngeal cancer, and general times to recurrence.

Most of these recurrences were detected by either persistent disease appearing on 3 month post treatment imaging or by patients presenting with symptoms at follow-up visits. I can attest to that since I found all my recurrences, except one, by self palpitation, which were confirmed by imaging, biopsy. The other, was only found by imaging, due to the pec flap.

In this article, which are similar to others I've read, within 3 years, local control was 97.8% of all patients, regional control in 95.3%, locoregional control in 94%, and freedom from distant metastases was 91%. Even this article mentions "high cure rates", which term I heard used many times before.

I wish the best for your mother!

http://oralcancernews.org/wp/imagin...es-of-hpv-positive-oropharyngeal-cancer/

Hi there. My husband also was diagnosed with Stage 4 oral cancer, base of tongue with lymph nodes, so I think I understand your concern. My husband was diagnosed about 20 months ago and was treated with surgery and radiation, but no chemo. That scares me a bit, but so far so good. I have to force myself to say "today he is fine" and to go with that mantra. I too find this site very helpful, but also a bit scary although I can't seem to pull myself away from reading it routinely. I enjoyed reading the responses to your post from folks who have been dealing with this for a long time. Good luck to you and your husband, and your mother. And it sounds like a cliche, but take care of yourself!

I was diagnosed in 2008, non-HPV and no recurrence. I am considered cured. Yes, there are some pesky side-effects; have recently started experience muscle cramping in my neck, have reduced saliva and ongoing non-cancerous sores on what's left of my tongue, but these are really minor concerns.

The first few years, when you're really waiting for bad news are tough. Really tough. But yes, some of us do survive.