Diagnosis and discussions: HPV 16 Squamous Cell Carcinoma

Posted by chapmanswife @chapmanswife, Mar 2, 2017

Hi my husband is just in the diagnosis stage of what two doctors believe is HPV 16 Squamous Cell Carcinoma. His biopsy was reviewed then sent to the Mayo clinic for further review. Now we wait… but while we wait.. how does everyone deal with friends and family who mean well, but are hurtful when they tell me to ” buck up” and get through this! I feel like I am doing the very best I can right now to not completely lose my mind. Waiting is complete torture!

@chapmanswife

Today we got “the” phone call! The one that says.. we are so sorry… your husband is positive for Squamous Cell Carcinoma! PET scan is set up for next Wednesday the 15th .. then a followup with the dr to discuss the scan results! We knew this diagnosis was forthcoming, but to hear the actual words were a stab to our hearts! I am without words tonight, my heart hurts, my head confused!
Sandy

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The binder became my mom’s lifeline and almost strength-giver as she accompanied my father in his cancer journey. More than once she produced test results that weren’t in his medical records during an appointment (PS: this wasn’t at Mayo, but rather the community hospital where his treatment was continued.)
She was able to quickly produce a list of all his medications when needed. Your pharmacist can print out a record of all his meds and supplements (if any) for you.

@chapmanswife

Today we got “the” phone call! The one that says.. we are so sorry… your husband is positive for Squamous Cell Carcinoma! PET scan is set up for next Wednesday the 15th .. then a followup with the dr to discuss the scan results! We knew this diagnosis was forthcoming, but to hear the actual words were a stab to our hearts! I am without words tonight, my heart hurts, my head confused!
Sandy

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I fully endorse the idea of a binder. I didn’t use it but it would be a very useful resource. I just didn’t think of it!!

@chapmanswife

Today we got “the” phone call! The one that says.. we are so sorry… your husband is positive for Squamous Cell Carcinoma! PET scan is set up for next Wednesday the 15th .. then a followup with the dr to discuss the scan results! We knew this diagnosis was forthcoming, but to hear the actual words were a stab to our hearts! I am without words tonight, my heart hurts, my head confused!
Sandy

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@chapmanswife I am so sorry to hear the news. Even though it was expected, it is still a shock, isn’t it? Give yourself time and get as much rest as you can. Praying for you both as you face this new challenge! Teresa

@chapmanswife

Today we got “the” phone call! The one that says.. we are so sorry… your husband is positive for Squamous Cell Carcinoma! PET scan is set up for next Wednesday the 15th .. then a followup with the dr to discuss the scan results! We knew this diagnosis was forthcoming, but to hear the actual words were a stab to our hearts! I am without words tonight, my heart hurts, my head confused!
Sandy

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I got a binder & dividers.. trying to set it all up! Any advice on what catagories to use? I have 8 dividers.. also printed off a calendar, included loose paper & spiral notebooks…thank you again for the awesome advice to get organized!!
Sandy

@chapmanswife

Today we got “the” phone call! The one that says.. we are so sorry… your husband is positive for Squamous Cell Carcinoma! PET scan is set up for next Wednesday the 15th .. then a followup with the dr to discuss the scan results! We knew this diagnosis was forthcoming, but to hear the actual words were a stab to our hearts! I am without words tonight, my heart hurts, my head confused!
Sandy

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I set up a binder for my husband who has salivary duct carcinoma. These are the categories that I have found helpful: medication list, tests results, Primary physician, radiologist, surgeon, oncologist, treatment, research, appointments, insurance. I keep several sheets of lined paper in each doctor tab to record notes. Unfortunately, Ken was stage 4 when diagnosed, so surgery and radiation have not been an option. He is currently taking immune therapy.. Keytruda. The therapy has damaged his endocrine system, so we will be off for 9 weeks while taking steroids. The good news is the tumors do not appear to be growing. We are scheduled for a scan in 2 weeks and will resume therapy in 3 weeks. Being organized is key to being able to support your husband. This is one area that I can control.

@chapmanswife

Today we got “the” phone call! The one that says.. we are so sorry… your husband is positive for Squamous Cell Carcinoma! PET scan is set up for next Wednesday the 15th .. then a followup with the dr to discuss the scan results! We knew this diagnosis was forthcoming, but to hear the actual words were a stab to our hearts! I am without words tonight, my heart hurts, my head confused!
Sandy

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@chapmanswife Hi Sandy: As I see there is a discussion on keeping a binder, I’m reminded of a great little book I read a number of years ago, Doing Well at Being Sick. The author, Wendy Wallace, has a number of serious health issues and I’m sure you will find lots of information and inspiration from her book. She also kept a binder that traveled with her when she left home. The story of how she and her family dealt with her illness is really remarkable. I believe it can be ordered from Amazon. Teresa

@chapmanswife

Today we got “the” phone call! The one that says.. we are so sorry… your husband is positive for Squamous Cell Carcinoma! PET scan is set up for next Wednesday the 15th .. then a followup with the dr to discuss the scan results! We knew this diagnosis was forthcoming, but to hear the actual words were a stab to our hearts! I am without words tonight, my heart hurts, my head confused!
Sandy

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That is very good advice. It would give you and your husband a sense of control, something that we need when life throws these things at us.

@chapmanswife

Today we got “the” phone call! The one that says.. we are so sorry… your husband is positive for Squamous Cell Carcinoma! PET scan is set up for next Wednesday the 15th .. then a followup with the dr to discuss the scan results! We knew this diagnosis was forthcoming, but to hear the actual words were a stab to our hearts! I am without words tonight, my heart hurts, my head confused!
Sandy

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I will look that up. It sounds like excellent advice.

@chapmanswife

Today we got “the” phone call! The one that says.. we are so sorry… your husband is positive for Squamous Cell Carcinoma! PET scan is set up for next Wednesday the 15th .. then a followup with the dr to discuss the scan results! We knew this diagnosis was forthcoming, but to hear the actual words were a stab to our hearts! I am without words tonight, my heart hurts, my head confused!
Sandy

Jump to this post

I think the first one should be for test results. It worked for me to have at least three copies to hand out to the different doctors you will be seeing. I know they will offer to make copies, but it is best to keep the original always in your book. Keeping a few sheets of lose paper in each divider works really well (you already figured that yourself). The second one is good for doctors. I printed their info from the internet, with their picture, and inserted loose paper after each doctor for notes. In this divider, get a plastic sheet with dividers for cards, that way you will have a directory with the cards you will be handed at their offices.Insurance and receipts is another one. Also keep copies of his insurance in there to hand out. Another divider for appointments. Another for medications and make copies as well to hand out., etc. The calendar is a great idea. That could be your cover.
Whenever you see a doctor, bring a list of questions with you, with spaces for the answers. If you feel tired or too overwhelmed, bring with you a fresh mind that can take notes for you. Remember that from now on, you are the caregiver, and you need to be strong, rested, and well fed. Do not be a super woman, and request help from family and friends. They can bring food, and seat down with your patient while you take a gulp of fresh air. There is a computer program called “Lots of helping hands”, that works wonders to organize help from others. It is a great idea to have a group text to communicate the progress. When it becomes necessary, you can delegate someone to do the reporting.
Maybe I am going too far, and overwhelm you myself! Hope for the best, prepare for the worst kind of thing. I just want to help as much as I can.
Love and prayers, Loli

@chapmanswife

Today we got “the” phone call! The one that says.. we are so sorry… your husband is positive for Squamous Cell Carcinoma! PET scan is set up for next Wednesday the 15th .. then a followup with the dr to discuss the scan results! We knew this diagnosis was forthcoming, but to hear the actual words were a stab to our hearts! I am without words tonight, my heart hurts, my head confused!
Sandy

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Excellent advice

@chapmanswife

Today we got “the” phone call! The one that says.. we are so sorry… your husband is positive for Squamous Cell Carcinoma! PET scan is set up for next Wednesday the 15th .. then a followup with the dr to discuss the scan results! We knew this diagnosis was forthcoming, but to hear the actual words were a stab to our hearts! I am without words tonight, my heart hurts, my head confused!
Sandy

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No Loli- These are all great great ideas! I have no idea what all I need or dont need.. your help along with others is invaluable to me! I dont anticipate any help from family as none live close by or have even said they are coming to Omaha when he has surgery! I think Im on my own so I have to be very prepared!! Thank you again so much!
Sandy

@chapmanswife

Today we got “the” phone call! The one that says.. we are so sorry… your husband is positive for Squamous Cell Carcinoma! PET scan is set up for next Wednesday the 15th .. then a followup with the dr to discuss the scan results! We knew this diagnosis was forthcoming, but to hear the actual words were a stab to our hearts! I am without words tonight, my heart hurts, my head confused!
Sandy

Jump to this post

Thank you Teresa! I will check into her book!!
Sandy

@chapmanswife

Today we got “the” phone call! The one that says.. we are so sorry… your husband is positive for Squamous Cell Carcinoma! PET scan is set up for next Wednesday the 15th .. then a followup with the dr to discuss the scan results! We knew this diagnosis was forthcoming, but to hear the actual words were a stab to our hearts! I am without words tonight, my heart hurts, my head confused!
Sandy

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@chapmanswife You will enjoy it, Sandy. She brings her faith into her health situation beautifully! Teresa

@alpaca

Hello and sorry to hear your husband’s news. I’ve had SCC diagnoses three times and I’m still here and reasonably functional! One of the hardest parts is what you are going through right now. Once the diagnosis and treatment plan are complete you will feel a lot better. The waiting is hard, I know. I would suggest lots of nice food because HNC treatment usually means a period where food intake is difficult so enjoying food while he can makes sense. It takes a while to get back to eating after surgery and radiotherapy causes a sore mouth for a few weeks or months. I understand what a shock those words are. Usually a sort of battling instinct kicks in quite soon as treatment begins and then the emotional pain recedes. Wishing you all the best.

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Hi Sandy,
Checking on you. Just another bit of info: There is another program called TakeThemAMeal. com This is a good site for sending meals if your family and friends are far away and want to help with meals when the time comes. Usually, it is when you come back from the hospital and are so busy taking care of your patient. This works well, so you are not loaded with food the first few days, and later you have no help at all.
Just thinking of you and sending prayers and love.
Loli

Thanks Loli! I dont know where to begin…. my husband & I will be headed to Omaha Nebraska for his surgery very soon, then back home for treatment. His PET scan showed no other areas, but it also showed no point of origin. His dr believes he has micro tumors in his tonsils that arent able to be detected on scans. I am so frustrated with this process
Has anyone else had this happen where the point of origin was not found?
Sandy

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