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#185855 10-12-2014 03:56 AM
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Chrnlar Offline OP
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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-43 year old caregiver
51 year old husband with BOT Cancer, SCC, HPV16, enlarged lymph node at the neck, non-smoker, healthy and fit
ENT Appt 10-9-14
Biopsy 10-13-14, Results of Cancer 10-16-14, 1.8x2.2cm left side lymph node
1st Medical Oncologist appt 10-21-14, learned Stage 3 or early 4, T3N1Mx
1st Radiology Oncologist appt 10-30-14
PET Scan 10-27-14
1st weekly Erbitux chemo 11-12-14
PEG tube surgery 11-13-14
1st of 30 IMRT Radiation Treatments 66 gy 11-25-14
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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!



Christine
SCC 6/15/07 L chk & by L molar both Stag I, age44
2x cispltn-35 IMRT end 9/27/07
-65 lbs in 2 mo, no caregvr
Clear PET 1/08
4/4/08 recur L chk Stag I
surg 4/16/08 clr marg
215 HBO dives
3/09 teeth out, trismus
7/2/09 recur, Stg IV
8/24/09 trach, ND, mandiblctmy
3wks medicly inducd coma
2 mo xtended hospital stay, ICU & burn unit
PICC line IV antibx 8 mo
10/4/10, 2/14/11 reconst surg
OC 3x in 3 years
very happy to be alive smile
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Posts: 286
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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.


Cheers, Dave (OzMojo)
19Feb2014 Diagnosed T2N2bM0 P16+ve SCC Tonsil.
31Mar2014 2 Cisplatin, 70gy over 7 weeks (completed 16May2014)
11August2014 PET/CT clear.
17July2019 5 years NED.
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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


Tony, 69, non-smoker, aerobatics pilot, bridge player/teacher, avid dancer (ballroom, latin, swing, country)

09/13 SCC, HPV 16, tonsillectomy, T2N0.
11/13 start rads, no chemo
12/13 taste gone, dry mouth,
02/14 hair slowly returning
05/14 taste the same, dry sinuses, irrigation helps.
01/15 food taste about 60% returned, dry sinuses are worse in winter.
12/20 no more sinus problems, taste pretty good

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Chrnlar Offline OP
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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...


Cheri-43 year old caregiver
51 year old husband with BOT Cancer, SCC, HPV16, enlarged lymph node at the neck, non-smoker, healthy and fit
ENT Appt 10-9-14
Biopsy 10-13-14, Results of Cancer 10-16-14, 1.8x2.2cm left side lymph node
1st Medical Oncologist appt 10-21-14, learned Stage 3 or early 4, T3N1Mx
1st Radiology Oncologist appt 10-30-14
PET Scan 10-27-14
1st weekly Erbitux chemo 11-12-14
PEG tube surgery 11-13-14
1st of 30 IMRT Radiation Treatments 66 gy 11-25-14
Joined: Mar 2014
Posts: 286
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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.


Cheers, Dave (OzMojo)
19Feb2014 Diagnosed T2N2bM0 P16+ve SCC Tonsil.
31Mar2014 2 Cisplatin, 70gy over 7 weeks (completed 16May2014)
11August2014 PET/CT clear.
17July2019 5 years NED.
Joined: Feb 2007
Posts: 176
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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


6-05, Left Tonsil-T1N2bM0 stageIVA, chemo(Cisplatin), radiation(6660cGy), neck disection, no PEG. HPV negative. (Doc suspects posit)
3-9-09 last of 30 HBO treatments.
Joined: Sep 2014
Posts: 27
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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,


Caregiver
BOT 3 cm 08/24/14
Pet Scan 09/24/14 localized
Rad started 10/07/14
Cisplatin started 10/09/14
PEG 10/28/2014
Last Rad 11/26/14
Last Chemo 11/21/14

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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,



Patty / husband Dx with Stage 1 SCC
November '12, BOT ulcer
June '13, first biopsy-negative.
October '13, second biopsy-positive
November '13, second opinion at CCC, T1
December '13, partial glossectomy.
September '14, biopsy on lymph nodes, 1 tested positive.
October '14, right side neck dissection. 14 nods out, with only one affected.
November '14, T1N1M0 radiation in the recommended by oncologist
December '14, radiation treatment

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Chrnlar Offline OP
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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.


Cheri-43 year old caregiver
51 year old husband with BOT Cancer, SCC, HPV16, enlarged lymph node at the neck, non-smoker, healthy and fit
ENT Appt 10-9-14
Biopsy 10-13-14, Results of Cancer 10-16-14, 1.8x2.2cm left side lymph node
1st Medical Oncologist appt 10-21-14, learned Stage 3 or early 4, T3N1Mx
1st Radiology Oncologist appt 10-30-14
PET Scan 10-27-14
1st weekly Erbitux chemo 11-12-14
PEG tube surgery 11-13-14
1st of 30 IMRT Radiation Treatments 66 gy 11-25-14
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