I'm wondering if I should be here but I want to be prepared. My husband who is 51 years old has been feeling more tired, weaker, having throat pain, trouble swallowing and ear pain for over 6 months. He had his yearly physical and several doctor visits. Our primary doctor with regard to him not being as strong and maybe more tired is because he is not 30 or 40 years old anymore and that he is over 50. We even had his testosterone checked. But that was within the normal range. For the ear and throat pain he was given allergy meds and an injection. That didn't help. Several weeks ago he was given a nerve blocker for pain as we waited for an appointment referral for the ENT Dr.

Three days ago was our appointment and the Dr was very concerned about swelling at the base of his tongue and abnormalities and inflammation of the tissue around the tonsils. Right away he ordered a CT scan, blood work and an EKG which were performed that same day and a biopsy is scheduled for Monday. Wow! All these months of wondering what was wrong and now it's urgent!

My husband relayed to the Dr that he can see how fast he is moving with a sense of urgency, "What are we looking at and what is the outcome?" The doctor didn't want to exactly say. But said he would know more after the biopsy...I can't even remember all he said but when he mentioned radiation and chemo treatments I couldn't believe what he was saying!

Could he have cancer? My husband seemed strong, and took it better than I did but after going back to work for an hour or so somewhere along the way, it set in for him. And later that night he shared with me that the news has put him into a funk. How can in a matter of moments the chance of being told you might have cancer set us into a depression for the past couple of days? How could this be? He is so healthy. Works out everyday, takes vitamins, eats healthy, is at a healthy weight, has never smoked. I'm 8 years younger and he is and he is way more heathy and fit than I am. But I'm sure that is everyone's reaction when given the same information...why, how?

That night my husband began to get on the internet and for some reason he asks me the name of the actor that is married to Catherine Zeta Jones. "Michael Douglas?" I asked. And so he searched and read...he believes he has HPV oral cancer. I don't even know how he knew about Michael Douglas' cancer. But after him reading it to me, I agree too.

Rewind about 15 years ago and I had HPV in my cervix and had a procedure done to remove the cancerous cells. We've been together 22 years and just celebrated our 17th wedding anniversary.

No biopsy yet, but here we are with all kinds of scary emotions and I just didn't know where to go...so I ended up here. For the moment, I'm grateful to have a place to share and learn.

Cheri, welcome to OCF! No, you are not here too early. We will help you every step of the journey. Read and educate yourself both here and on the main OCF pages.

Until you have a confirmed diagnosis, try your very best to stay busy. It will help pass the time and make the unbearable waiting slightly easier. If the biopsy is being done next week it could be another week until the final results are in. Us OC patients and caregivers get pretty good at waiting (impatiently).

One thing you can do now is to focus on what your husband eats. If it is OC, his sense of eating and ability to swallow will be compromised for a while so start having him eat all his favorite foods. Now the good part, dont worry about your husband gaining weight.

Hang in there!

Hi Cheri and welcome to OCF. Insert the usual disclaimer here we're not physicians. If we were, like your ENT, we couldn't tell you anyway because the only reliable way to diagnose it is with a biopsy. The CT will help with working out the staging if it is cancer.

There are a number of things that lead a doctor to follow a particular direction. Risk factors and previous illnesses can point a doctor to investigate a range of conditions. I have no idea what an EKG would be for, I assume he has something indicating a heart condition as well? Anyway not everything is immediately obvious and sometimes symptoms need time to develop. My point is its not necessarily incompetence or neglect leading to delays in diagnosis.

This is a very scary time for you both with a lot of information to take in. You need to strip away the many things you can't control and focus on the things you can. Diagnosis and treatment are made up of a lot of steps, and its best to break down the journey into those steps. The next appointment, the next scan, etc. The next step for you is the biopsy. You'll know in a few days the outcome of that, and you'll know the next step.

Diagnosis, treatment and recovery can be enormously hard work, but they are all doable. It sounds like a cliche to say "keep positive" but it is so true, especially when the path ahead is unclear. Have a mindset from the start that you are both going to fight this, whatever it is, whatever the odds, and you are not going to give up. You'll feed off each other's strength and not each other's fears.

The internet can do two things for you. It can bring you good information helping you understand the torrent of information and new concepts the doctors are trying to explain to you. You can also use it to scare yourself silly. Not every headache is a brain tumour, but Google will point you in that direction. A lot of the information about survival rates and all that take a lot of medical expertise to analyse in context. Just don't go poking around in there. Take everything you read on the internet with a grain of salt (including what you see here) and run it by your doctor.

Lastly, take care of yourself. Everyone, including you, will focus everything on the patient. The caregivers sometimes need someone to ask "how are YOU going?" When you come back here, I'll be looking for the answer to that question ok?

Let us know how the biopsy goes, we'll be here for both the good news and challenging news.

Hi Cheri - welcome to the family though I hope you really don't end up needing to be here. We wish that to all who are like you ... waiting on results... scared to death ... don't know what to do... so they worry... probably just like you.

Okay enough of the periods. You wrote about Michael Douglas, he's the first person I googled when I found out I had oral cancer from the biopsy results. Ironically, I had the same cancer he did, only if memory serves his was stage 4, where mine was stage 1. He survived just fine, I did too, your husband will too. It may just be an uncomfortable journey getting there.

But, many of us have gone through that same journey, and the forum family helped us all. It will help you and your husband too. It seems I was only down in a funk maybe once during my treatment, and getting on the forum and writing about it helped a lot. Just reading what others have gone through, or are going through right now helps us to realize we are not alone, we have a lot of friends who may be many miles away, but the internet makes us helpful and knowledgeable neighbors.

So, if this thing turns out to be oral cancer, just keep on writing and asking questions. We will help you both get through this.

take care,
Tony

Thank you for caring responses. The ENT performed a microdirect laryngoscopy with biopsy today. Prior to the procedure he told us the CT Scan showed an enlarged lymph node. He talked to a oncologist about our case and said if the tests come back positive for cancer they will prescribe radiation. The earliest we will hear will be Thursday or Friday (3-4 days from now). After the procedure the doctor told me the base of his tongue is hard which I guess leads him to believe its a tumor. He also said he has spoke with a radiation oncologist to start the process because it could take a week or two to get in. If it comes back negative or he has an infection which is our best case scenario we can cancel the appointment. I'm really happy this doctor is so proactive and certainly appreciate it. More waiting...

More waiting? Its all steps as I said. Sort out what you can do/ have to do before the next step, and in the meantime, live life. Eat well, watch movies, talk about football, watch sunrises, whatever. If there's one thing I've learned from this little adventure, you can't live your life watching days count down on a calendar waiting for a doctor to tell you its ok to smile again.

Please be sure to get a second opinion at a CCC such as UCLA. Where you are treated has a huge effect on your outcome and side effects.
All the best,
Rob

Hi Cheri, I am a caregiver to HPV, base of tongue. I was scared to death and the hurry up and wait made me crazy. I was terrified, but through education and the folks here on the forum, I mangaged to get a grip. Hopefully your results will be negative. If you end up having to deal with this, educate yourself and ask lots of questions here. It has helped me tremendously, I am not terrified anymore and I am confident we are going to beat our cancer.

Hang in there Cheri,

Hi Cheri, welcome to the club!
I agree with the feedback you are getting here.
I'm a caregiver to my super wonderful husband.

We watched Michael Douglas on Jay Leno last year and immediately after the show my husband decided to listen to his doctor and had a recommended second biopsy.
I was thankful for unintended public service announcement!!

It was up and down in the beginning, but I'm enjoying the good times. In the nine months since my husbands partial glossectomy, we've been traveling and enjoying every day to the max while tending to the steps that were discussed here.

Last month, during a routine exam, the doctor detected a mass in my husband's neck, there was a ct scan, biopsy and pet scan followed by a neck dissection two days ago. The doctor is testing the lymph nodes to recommend (or not) further treatment.

I'm not sure if this is good or bad, but my husband didn't stay in the hospital overnight either time. He's been washing, polishing and working on cars since we got home. He's draining his own neck tube, recording his own progress and taking his own meds. I took the week off my activities to encourage and support him, but I'm the one relaxing, watching movies, and eating Popsicles. Go figure!

The first surgery was scary, but this one was less anxious for me.
The draining tube should be taken off this Friday and we'll get the results on Tuesday. Crossing our fingers.

I try to stay positive with yoga, meditation and lots of prayer. I feel I should take care of myself by staying emotionally, spiritually and physically fit. I also just signed up for the university of Maryland study on caregivers which focuses on writing your experiences. I suggest you jump on it. I got the link from Christine.

My downfall is emotional eating, so I'm up 15 lbs since my husband's diagnosis.
...... And I'm enjoying every bite!!!!!

Blessings,

Bad news...but was prepared (I guess). My husband received a call from the ENT Dr. The biopsy came back positive for cancer, SCC. That is all the info we have for now. He requested a PET scan and an appointment with a medical oncologist is now set for 10-31-14.

We are both trying to come to terms. My husband really hasn't slept much in 3 days. We asked for a prescription of anti-depressants and a sleep aid. Our primary care doctor's nurse said he will need to see him first but there isn't an appointment available until Tuesday. That is frustrating! The nurse said the primary doctor will review his chart and notes from ENT doctor and call us back. Didn't hear back before close of business yesterday. I found some Simply Sleep that I have used in the past and gave to my husband last night. We both went to sleep I think rather well, but I was up at 2:30am. He is still sleeping (i'm assuming). And hope he is able to do so. We each have a business to run and we need to function and figure the next steps clearly.

I am so sorry to hear the news, Cheri. It always takes me back to that exact moment when I hear such news.

What you both are experiencing will pass once there is some sort of order and routine established. There will be a lot of activity for a while. Just keep focused on the care and above all, remember many of us have been down the path ahead of you guys and we are here to help.

So sorry for your bad news. It wasn't that long ago we were going through the same thing. Sleepless nights, worrying, waiting for appointments. Hang in there. It gets better. There is a lot of good information in the forums here, and a lot of support from people who have been through it.

Do your best to take care of both of you! Hugs & best wishes.

Thank you Uptown and Gracie mars. May I ask...how much time away from work have you had to experience?

I think that's dependent on how well your hubby takes the treatment. Caretakers may need to be around from week 4-9 (I know his treatment will run for 6.5 to 7 weeks but the two weeks following radiation are actually worse. If he stays well hydrated and maintain his weight within reasonable standards, he may need 2-3 months off - likely from week 3-4 until he's feeling okay - possibly a month after treatment has finished (I'm being optimistic here) some people manage to work through it is they are independent workers and can do desk type work at home at their own pace. Mostly the person feels tired if they have trouble with chemo there may be varying degrees of nausea. There is also the potential for skin burns on his neck etc.... So that's a difficult question. I drove myself daily to treatment but not everyone can. I was very blessed that even though it was horrible. I was okay. Hugs and best of luck,

Sorry to hear about the diagnosis. In my own experience, the sleepless nights and worry lessened with time. Once I had the diagnosis, my mind switched over from worry to just simply trusting the doctors, nurses & other staff at the cancer center & believing that they're professionals & will do the best they can to fix me up. Once I resigned myself to the fact that there's really no benefit to me worrying about it, there's nothing I can personally do about it now, and that the only people that will make it better are already doing what they can, I started being able to sleep again. I was reasonably lucky to get my treatment fairly quickly.

As business owners, I suppose you'll feel the need to get back to it as quickly as possible. I'm just a regular old grunt working for someone else, but was lucky enough to have a fairly substantial short term disability coverage at work, and was off for a bit under four months with pay. How long your husband will be out of commission will probably depend on what they end up doing with him in terms of treatment.

Cheri, my circumstances were so strange and I doubt if anyone would ever be able to duplicate it. I was working from home with daily conference calls even while having chemo. I lost my voice the last 2 weeks of radiation and stopped working but I was able to go back in 7 weeks. It was much too early and I ended up staying home for about 6 months.

Chrnlar

Sorry to hear the bad news but hang in there. I am my mothers caregiver . She also had ear pain which brought her to the ENT. From there it all began. SCC started in my mothers left lower jaw.

I know the feeling of no sleep. I find myself online all night researching a lot . I asked the Oncologist to prescribe my mother Ativan for the anxiety. It seems to be working well and she rest much better also.

Hang in there and also you will find this forum very helpful to many questions you might have.

Good luck
Heidi

Cheri,
my husband worked on radiation (but not chemo) days until the last week. He took that off, and half a week following treatment. I drove him when he was on narcotic pain killers. He HATED that ... and went off them cold turkey the week after treatment. He is stubborn.
He had to sleep a lot longer than normally during and after treatment. Our schedule included me calling him at work to remind (nag) him to drink his afternoon Ensure.
He was lucky in that the Cetuximab chemo did not knock him for too bad of a loop, although it did give him a pretty good rash.
I think that walking our old dog everyday helped - got us out, and it was something normal.
Best wishes to you both,
Maria

Hi Cheri- I'm only a couple weeks ahead of you and I can still remember the day we heard ..."it's cancer". We had to say it out loud to each other a bunch of times just to make it real. My husband and I did and continue to focus on what we heard from the beginning...." This is going to be difficult, but at the end your looking at a cure" . My husband took off a week after surgery and plans on taking off 3 more weeks at the end of radiation and right after radiation ends. This may be optimistic but that's what we're going with. He's finished day 12 of radiation and still eating and drinking without a feeding tube thanks to the drug combination he's taking. We make the most out of the weekends while he is still feeling okay.

Someone earlier in this thread talked about trusting the doctors, I really struggle with that as his care giver. He goes right along without question. This forum is fabulous but also a bit scary. I'm beginning to understand that everyone has their own journey and although sometimes I'm reading about the worst, I work hard to think the best. Good luck and I'll add you to my prayers!

Cheri welcome to OCF. I am sorry you have to be here but it is the right place. Please take this time to educate yourself as well as your husband. Ask questions of all Doctors,Nurses and members on this site. Use the time wisely. Encourage your husband to bulk up and increase exercise for strength. He needs to prepare for a fight. Draw close together and strategize the care. Lean on this group above all. We have been where you are going.

Hi Cheri,

My heart goes out to you and your husband, cancer shatters all that you know about your life and flips everything upsidown and inside out. The strange thing is that you and your husband will grow closer than you knew possible. Stephen and I were laying in bed last night looking back at our emotional state of desperation as though it was yesterday. We became closer because we lost all that we knew and rebuilt our life from scratch. There is a kind of nostalgia that comes from living through a profound existential experience. You too will feel that it is a rebirth of sort, you will make it through!

-Both of us needed a little medication to help with the panic attacks at first.

-My husband is an artist and managed to paint a watercolour the week before his surgery though he hadn't worked as of his diagnosis in September '13. He returned to painting the week after radiation but he struggles with energy levels still.

-Your husband must eat and sleep as much as he can pre surgery and you must do anything you can to gain your strength now. Eat, sleep, go for walks in new places, do everything you can to put yourselves first. Be firm and make sure your family respects your needs. You have all the right to think of your needs first, your health is number one.

-Make a list of all the things you will need help with while you are away and assign people to the tasks. Little things like frozen prepared meals such as pur�ed soups can come in handy once you are back home.

-You will want to meet your physio therapist as soon as you can(this is usually after surgery) and do the strengthening exercises to maintain range of motion.

- You will want to meet your speach pathologist ahead of the radiation to strengthen and maintain swallowing ability. The prescribed exercices must be done three times a day. My husband is 8 months post radiation and noticed that the scaring around his neck progressed and he must return to doing the swallowing exercices so that his throat closes completely when he eats.

-Ask yourself if you trust your medical team. If the answer is yes, trust them to do the heavy lifting but ask all the questions that will put your mind at rest. Try not to do too much internet reading, this was a really negative experience and futile in my case.

You have found the best spot in the world here! The connections you make are immediate and the knowledge is profound. I see now how positive the outlook can be and how critical it is to believe that you will make it. The level of care your husband will need will be outstanding and he will need you at his side after surgery. I moved into the hospital with him as soon as he was out of ICU. Being there 24/7 for Stephen was the most important thing I have ever done in my life.

(Side Note about Work options for you) Oct 24 '14 will be one year post op for my husband. I was not able to return to work until the next school year because of stress/shock and eventually exhaustion. I had the fortune of an employer who understood. My doctor put me on sick leave and my employer payed me all my accumulated sick pay which I never use so it was almost 6 months, after that the options are 'Employment Insurance' or long term disability if you have insurance and you qualify. Take the time you need people will understand and help you figure out the process.

Being present and open to your husband is the biggest gift you can give him. Focus on the now.

Keep reaching out, Sophie

Thank you all for the new posts! We have laid low this weekend. Spent time with our 7 month old lab puppy, enjoyed the sunshine from our back patio, had dinner with some friends (needed to leave more early than normal because my husband was tired). Today we took our jeep on a trail for a picnic with the puppy. It was great to get out of the house and do normal things. Actually...this dx is making us slow down and smell the roses. We have been a on the go couple for the past 5 years with my husband's business, do alot of traveling and working weekends. But the past two weekends at home I've been so engrossed with research it was driving me crazy. I read an entire book in 2 days on caregivers and survivors of head and neck cancers.

I can say I really take comfort in having a place to learn and share.

Anytime you need anything.... We're here...

So happy to hear you are taking the time to enjoy and support each other. Sophie