I'm new here. Got diagnosed by my ENT on 5/24/17. Official on 5/2017 after CT scan and biopsy result. HPV tumor at back of right tongue and tonsil. Some lymph node involvement, but doctors say that is normal. PET scan shows no spread. I'm scared because I want treatment to start faster. I have dental exam on Friday. Then meet with chemotherapy doctor following week. I get another CT scan for radiation mask same week as meeting with chemotherapy doctor. Treatment will be radiation and chemotherapy. Is what feels like a time delay normal? Doctor said it was stage 3, but said staging was not the main thing because staging is changing. I'm so scared. My ENT and team say they are optimistic and they will get me through this. I am angry at myself that I did move faster, but I thought it was a sinus infection because I've had those in the past. Any advice, etc. would be appreciated. I'm trying to learn how to post as well. Thank you.
Philip

Welcome to the forum, nevertheless, I'm so sorry that you have to join our circle of friends.

The time span between diagnosis and the start of treatment does seem long, but there are so many things that have to be done that the time is actually necessary. I'm in Toronto, Canada; here, the government's expectation is for patients to start treatment within six weeks of the diagnosis. In the U.S., the protocol seems to be similar to me.

The best thing you can do for yourself right now is to find out if your hospital provides other services such as a nutritionist/dietitian, speech therapist and even psychotherapy. It helps to have all that information beforehand because if you need any of these specialists in the middle of treatment, you will know how to access them. It will also help for you to stop, take a breath and read all of the information pamphlets that your doctors may be giving to you, for example the ones on chemo brain, how to deal with skin breakdown during radiation, etc. there are tons of these around. They are factual and they have suggestions which you can follow. That will help you focus on your treatment and gain a measure of control over your illness. While we all fear cancer, fear doesn't help you deal with what you have to face when under treatment. If you have been given swallowing exercises, please learn to do these and maybe even start doing them so you get into the habit of doing them every day during treatment. These exercises are really helpful for keeping the swallowing muscles working so that they don't atrophy.

Do go out and eat all your favorite foods now. Don't worry about putting on weight as you are bound to lose weight during treatment. There will be taste changes so that for a while nothing will taste as they should. So, do that now.

Don't be angry with yourself. It's not going to help you deal with the disease. If you can at all, change your focus -- dealing with it so that you will have an easier time getting through radiation and chemo. Don't dwell on what you can't change.

I'm sure ChristineB will be by soon to talk to you about intake, so I will leave it to her. Do post again to let us know how you're getting on. There are members who are quite knowledgeable and they can be good support for you.

Welcome to OCF, Philip! You're in the right place for info and support. We will help you get thru this!!! Dont fret about any delay, you actually did quite good with your timeline of discovery and only a few weeks until treatment starts. As far as being sick, I thought the same thing... that I had a sinus infection but nope I had cancer as my family doc suggested. Im so glad I listened to him and went to the specialists he told me to or I wouldnt be here today. Its 10 years since I was first diagnosed and if I can do it then you can too

My advice for now is to eat all your favorite foods, desserts too. Treatments are going to change your sense of taste and ability to eat. For most of us its a temporary change but it can upset your normal eating for at least several weeks to a couple months. You do not want to go into this with cravings for something you cant fully enjoy when eating and you're half way thru treatments. Ill nag you soon enough about your daily intake of calories and water. Just eat everything now and if you are slim push to gain some weight before you start treatments.

You should have a thorough check up with flouride trays made and a full blood workup (including thyroid and testosterone) prior to any treatments. You need to have a baseline of what those normal numbers should be as you wont get an accurate reading after rads/chemo has started.

Anyone who offers you their assistance, tell them when the time comes you will let them know what they can do to help. People really do want to help but most of the time they have no idea what they can do. Theres all kinds of little things that can add up to making this much easier on you. Walking the dog, picking up groceries or prescriptions, driving you to treatment or an doctors appointment, doing a load of laundry, mopping your kitchen floor or if you have children taking the kids out for a Saturday of fun so you can get rest are all little things that are a huge help when you arent feeling well. Write down everyone who offers their help and then you or your caregiver will know who to call on when you need a hand.

The American Cancer Society has a patient/driver matchup program that might be useful to help you get to your treatments, or they will give you a $300 voucher for prescription copays or transportation costs. They are available 24/7/365 so call right away and get the ball rolling as the paperwork is likely to take a week or 2.

Im sure theres a million other things to tell you but off the top of my head I probably already said too much info. I know you are scared and boy is that one difficult sentence to write, even to a bunch of strangers its hard to admit. Ive been where you are and so have our members, we understand how scary the unknown is and the wide range of emotions that come with facing a serious potentially deadly disease. We got your back and will be here so if you need to vent or lean on someone its ok, we understand.

Best wishes with everything!!!

Thank you for the quick reply and encouragement. A friend directed me to this web site and forum. I like the idea of eating all of my favorite foods now. I've been told to avoid deserts, but my doctor says desert is ok. Is it ok? You hear so many things. Dealing with the anxiety and fear is the hardest. I have begun counseling one day per week and the doctors gave me some anti-anxiety and sleep medications. I'm am an emotional mess and can cry at the drop of a hat. I'm so grateful to be married to a strong and loving woman, but I know this will test our marriage like nothing else. I'm a solo attorney and I'm moving my clients and myself to a larger firm because I want the best for them. They will be in good hands and I will be available to them even if I'm unable to attend Court while I'm being treated. Thank you. Philip. .

Yes, desserts are ok. Have one for me too!

Some patients are able to work during their treatments, but most arent. It depends on the type of job and the persons overall health, age, etc.

What you are experiencing is completely normal. Its almost like the stages of grieving. Just be aware many OC patients and caregivers will need some help to get thru treatments and recovery. Its perfectly acceptable to need anxiety meds and a therapist to help you manage your emotions. Its usually a temporary thing just like anything other treatment aid, its a tool to get you thru the rough spots. Depression runs high in OC patients, its pretty easy to fall into a slump when you hit the hard parts of treatment and recovery. Its not easy to think of things on the bright side when week after week you feel worse and worse. Im glad to see you have already reached out to someone at your treatment facility. Its nothing to be ashamed of, if I had to guess I'd say about half of patients need this to help them get back on their feet. Also, one of the very best things about our group is we completely understand where you are coming from and you are anonymous. Nobody here knows who you are or any personal info unless you tell us and that stays here, we never share our members info. So dont ever worry... your secret and info is safe with us.

You are right, this will be a big test on your marriage. Being a caregiver is a tough job!!! I always thought as the patient I had the easy job, I just sat thru all the treatments and eventually recovered. I cant imagine how I would be as a caregiver. I dont think I would be able to handle watching someone I loved go thru heck while keeping a smile on my face and always being positive but also managing appointments, foods, medications, doctors and occasionally putting on the nurse hat from heck*** and being an advocate for my patient. Nope, Im NOT cut out for that job at all. Just understand how difficult this will be for your wife and make sure she gets a break once in a while to walk away and clear her head. Going out to lunch with friends or getting a mani/pedi can be a huge morale booster for a caregiver who is overwhelmed. You're very fortunate to have such a strong person to watch out for you. She can also benefit from our site by learning about your disease and how to help you when the going gets tough.

Welcome Philip!

Sorry to hear of your diagnosis but glad you found us! I too had never posted or been involved in ANY on line social media, including Facebook, until joining this group. You will find everyone here very supportive and willing to share their experiences and knowledge to help you get through this very tough, but beatable disease.

As far as the timeline goes you are doing fairly well. It took me close to 2 months from noticing the lump in my neck and seeing my GP, to getting confirmation from the actual biopsy. Then another 4 weeks to get everything set up prior to treatment start. A little delay due to my doctor's vacation schedule.

Like Christine said, the depression and anxiety are par for the course. You may have never taken a pill for emotional issues in your entire life, but you have never been diagnosed with cancer either. I understand exactly how you feel. I am a pretty well balanced individual but this unhinged me big time.

You have a lot going for you so take some heart. I am sure you know that the cure and survival rate for HPV cancer is significantly higher than for those of us that are not HPV positive. You have a strong and loving wife to help you get through this. I have been married for over 40 years and have had a good relationship with my wife. Our love has only deepened through this entire ordeal. You just need to be aware of her feelings as well, as I am sure you will.

Just remember, when you hear someone refer to battling cancer, it's just that. A "battle." I am sure that when you walk into a courtroom you go in with the intention of winning. Take the same attitude here and you will do just fine. You are going to kick some butt!

Keep us up to date with your progress and best of luck. You are going to be OK.

Ed

🤠

Philip,

Your clients are very lucky to have you looking out for their interests even when you are faced with a crisis in your own life.

I cared for my husband for close to four years at home. If anything, those were times when we drew closer than before; we created new memories for us. We tried to carry on s normal life, we made jokes, we people-watched together at the hospital and we discussed the medical options together. I had the feeling that we were fellow travelers on this cancer journey. Honestly, if he had shut me out by not letting me participate in the worst trial of his life, I would have been really hurt and sad. I imagine your wife would probably feel the same way.

You would be amazed at how many people seek help from a therapist during treatment. At our hospital, there is a whole department that does the work. Like my family doctor used to say to me, "You would go get help if you have a broken leg, going to a therapist is no different." We all grieve, get angry are filled with fear when we hear the dreaded diagnosis. It's okay to cry "at the drop of a hat" like you said. Some people may grit their teeth and bear it, others may take solace in learning everything they can about cancer and the treatments; there's no one way to deal with such a difficult stumbling block in life. Give yourself permission to do what brings you relief.

Here's a shout-out to your lovely wife.

I'm so grateful for all the advice. I'm at back work today, trying to figure this out. I know I need to trust my treatment team and follow the process, but the anxiety can be overwhelming. I have been prescribed medication and I am taking it before bed and if needed, during the day. My blood work just came back as normal. Next step is to meet with dentistry this week and then next week chemotherapy doctor meeting, new CT scan for mask. I hope the treatment s begin right after that.
Philip

I'm so grateful for all the advice. I'm at back work today, trying to figure this out. I know I need to trust my treatment team and follow the process, but the anxiety can be overwhelming. I have been prescribed medication and I am taking it before bed and if needed, during the day. My blood work just came back as normal. Next step is to meet with dentistry this week and then next week chemotherapy doctor meeting, new CT scan for mask. I hope the treatment s begin right after that.
Philip

Did your doctors do a full work up including thyroid and testosterone? If not ask them about this.... it really is important. BTW, most of us have not had anything show up in the bloodwork showing we had cancer. Our kind of cancer is a sneaky bugger, hard to detect and hard to kill.