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chapmanswife
@chapmanswife

Posts: 15
Joined: Mar 03, 2017

Diagnosis and discussions: HPV 16 Squamous Cell Carcinoma

Posted by @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!

REPLY

@chapmanswife Hello and welcome to Mayo Connect. I’m so sorry to learn of your husband’s diagnosis and I agree, “waiting is torture.” I am sorry to hear that your friends and family are not being empathetic at this time. Some folks just don’t know how to respond and/or feel that saying something is better than just being there for you. Be sure that you take care of yourself during this time. We have a caregivers group here at Mayo Connect @IndianaScott is the volunteer mentor of the group. He will probably be in touch with you and give you an opportunity to meet with other caregivers of family members who are dealing with serious illnesses. Please know that you can always find a “listening ear” here at Mayo Connect! Ask any questions and feel free to vent here. Mayo Connect also has a cancer group and I’ll tag @colleenyoung who can put you in touch with that group. Best wishes. Teresa

Hi @chapmanswife, I’m sorry to hear you and your husband are going through this, and I can completely relate to the waiting and inquiries. We went through the same thing. Frankly, I gave myself space to say “I’m taking care of me now” and did my best to be honest with people. This included some close family members who (although well-meaning) sometimes hit the wrong button. I would just say, this is what I need right now and that usually got a good response. I don’t think people realize what it feels like, and although they want to help–sometimes it just comes out wrong. I’m sending you hugs and good thoughts. Remember, one day at a time and even one hour at a time. And it’s COMPLETELY okay for you to sometimes not be okay. That’s part of going through this. Hang in there and find those one or two folks who get it. You are doing awesome with all of this. ((hugs))
Melissa

@mbear

Hi @chapmanswife, I’m sorry to hear you and your husband are going through this, and I can completely relate to the waiting and inquiries. We went through the same thing. Frankly, I gave myself space to say “I’m taking care of me now” and did my best to be honest with people. This included some close family members who (although well-meaning) sometimes hit the wrong button. I would just say, this is what I need right now and that usually got a good response. I don’t think people realize what it feels like, and although they want to help–sometimes it just comes out wrong. I’m sending you hugs and good thoughts. Remember, one day at a time and even one hour at a time. And it’s COMPLETELY okay for you to sometimes not be okay. That’s part of going through this. Hang in there and find those one or two folks who get it. You are doing awesome with all of this. ((hugs))
Melissa

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Melissa, thank you so much for your encouraging words! I understand why it is important to also take care of myself, but I feel a bit guilty in that department right now! My main focus is my husband & his care/concerns! I have found that by limiting the amount of information I share with family & friends, the better off we are. I dont mean that we hold back info, I just mean we dont go into detail! I also created a group on my phone to be able to send only one text that goes to everyone instead of repeating myself, which is very time consuming, as he has a very large family! Any tips anyone has out there as we go through this process are welcomed!
Sandy

@mbear

Hi @chapmanswife, I’m sorry to hear you and your husband are going through this, and I can completely relate to the waiting and inquiries. We went through the same thing. Frankly, I gave myself space to say “I’m taking care of me now” and did my best to be honest with people. This included some close family members who (although well-meaning) sometimes hit the wrong button. I would just say, this is what I need right now and that usually got a good response. I don’t think people realize what it feels like, and although they want to help–sometimes it just comes out wrong. I’m sending you hugs and good thoughts. Remember, one day at a time and even one hour at a time. And it’s COMPLETELY okay for you to sometimes not be okay. That’s part of going through this. Hang in there and find those one or two folks who get it. You are doing awesome with all of this. ((hugs))
Melissa

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Sandy, you are the sweetest! I know what you mean about the guilt, but know I’m hugging you as it’s not easy for the family. TBH, I think it’s almost worse for my husband at times–but I get it. I started a CaringBridge site to send out updates for us, b/c I couldn’t take all the texting/calling, etc. Then everyone gets everything at once and I can write as much as I need to. Sometimes, I tell you I just don’t feel like talking to everyone about it. Hang in there. I treat every day as a new day, if I have a rough one I just say to myself–well, today wasn’t the best but tomorrow will be better. It’s the best I can do sometimes. Lots of hugs to both of you, and there’s some great folks on here that can lend an ear when you need it. Thanks so much for sharing.
Melissa

@hopeful33250

@chapmanswife Hello and welcome to Mayo Connect. I’m so sorry to learn of your husband’s diagnosis and I agree, “waiting is torture.” I am sorry to hear that your friends and family are not being empathetic at this time. Some folks just don’t know how to respond and/or feel that saying something is better than just being there for you. Be sure that you take care of yourself during this time. We have a caregivers group here at Mayo Connect @IndianaScott is the volunteer mentor of the group. He will probably be in touch with you and give you an opportunity to meet with other caregivers of family members who are dealing with serious illnesses. Please know that you can always find a “listening ear” here at Mayo Connect! Ask any questions and feel free to vent here. Mayo Connect also has a cancer group and I’ll tag @colleenyoung who can put you in touch with that group. Best wishes. Teresa

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Thank you Teresa! I look forward to hearing from others and their experiences!

@chapmanswife Hello Sandy, I’m glad that you have connected with Melissa, she is a great encourager! I’m sure that you will connect with others as time goes on. Keep in touch with us and let us know how you and your husband are doing. At Mayo Connect we care for each other. Teresa

Hi Sandy,
As Teresa suggested, I have moved this discussion to the Cancer group, so that you can connect with others talking about Squamous Cell Carcinoma. You may also be interested in following the Caregivers group here: http://mayocl.in/2h1ttpY I think you might be interested in these discussions:
– The Caregivers’ Guilt Dumpster – Open for business http://mayocl.in/2cHbo19
– IMNSHO: The Top Ten Things NOT to say to a Caregiver http://mayocl.in/2mBxF3v

Also here’s a link to the CaringBridge that Melissa referred to https://www.caringbridge.org/ It’s one place where you can share with all members of your family and friends, whoever you decide to share with.

I hope you have recognized already that Connect is a place where you can speak frankly, without judgement. Glad you found us. May I ask, where is your husband’s cancer located?

Thank you! We have been told its in the right lymph node in his neck, but also in the right tonsil!
Sandy

@chapmanswife

Thank you! We have been told its in the right lymph node in his neck, but also in the right tonsil!
Sandy

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Sandy,
I’d like to introduce you to other members talking about squamous cell carcinoma. Please meet @carolynswebb who’s son has squamous cell cancer, @mrsjhagen18 who has squamous cell carcinoma of the tonsil and @lzzie who has squamous cell carcinoma of base of tongue. Also meet @sylviapf @lisa_sj99 @loli @alpaca and others who are talking about head and neck cancer here:

– Head and neck cancer http://mayocl.in/2eskY6G

Sandy, how are the two of you doing today?

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

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.

@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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Thank you for that! Im so sorry for the trials you have endured! It is very fearful to not know what lies ahead! Many prayers & hugs to you!
Sandy

@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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I know. And I would never minimise the struggle but we can still make a good life for ourselves after treatment. Go well.

@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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Hi Sandy,
I am so sorry you had to hear this words. Alpaca is right: After the initial shock, the warrior in your husband and yourself, will kick in. I recommend you get a binder with dividers, and keep a couple of copies of the initial diagnose in the front pocket of the binder. Make as many divisions as needed, one for notes and ?, one for medications, one for doctors, etc. Get well organized and make it his life’s new project. We will be here to help and cheer, and share, if needed our expertise. I had my 4 year check-up yesterday, and I am grateful every morning for another wonderful day.
Love, 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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Loli thank you for your encouraging words… I am hoping 4 years from now we will feel as you do! Thats a great idea to get a binder and dividers… I would have never thought about it!! We dont know what we are in for, but Im guessing organization with notes, appts, etc will become very important! Thank you again! I am sure as this progresses I will need a shoulder to cry on!! Much love & hugs to you!
Sandy

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