My Sweetheart has cancer
Hello everyone!
I imagine you will be my best friends throughout the next few months. My husband was recently diagnosed with tonsil and lymphnode cancer. We go to Stanford Hospital on Monday to find out the plan for his treatment. We've been told by the referring doctor that he will have surgery and radiaton but we are not sure in what order. I'm so scared for him and have searched the boards for answers. This forum has been the best and appears to be honest with answers. I need to know everything possible I can do to help him. We have grown children but it will pretty much be me taking care of him. Any questions we should take with us on Monday? We have some but since we are so new to this I'm sure you could give us a better idea of what to ask. Thank you, thank you.... and God Bless you all. You will be my examples to him when he gets frustrated and beaten down. I love how positive and strong you all are. I had this posted in the wrong place and already one of you has helped to get me on the right path. Thank you again.
Comments
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Hello Christine....and welcome to this
wonderful group. You will find so much support here as you and hubby travel this road. At this juncture, my advice is 1) don't start searching the internet to find answers about the disease, you'll bump into wrong information, old information, and depressing information. 2) read the Super Thread (it's always at the top of our forum)....it is packed full of everything you'd ever need to know. As your man goes thru treatment, you will have many questions, and we will be here to help make that journey easier.
We'll love having you as a best friend
.p
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Hello Christine
Welcome to our family. I'm sorry you have the need to join us but I can assure you, you've come to the right place. I know how scary it is fom the patients point of view and we have many many caregivers here too that will be able to give you some pointers from that aspect.
So I assume it was the ENT that diagnosed your hubby. So the next step is Standford to meet the oncologist right? I would guess you are going to meet the radiation oncologist and if he thinks chemo is needed also, he will send you to the medical oncologist.
Usually most patients have surgery before rads but each case is different. We also have many tonsil cancer patients here and they can be really helpful to you. Mine was laryngeal cancer so my vocal cords was the target spot. That being said, my surgery was mild because I wanted to preserve my voice if possible. If they had taken anymore I would have needed a total laryngectomy. I had Erbitux for my chemo portion of treatment and 35 daily radiation treatments. I just had my 9 month scans and am awaiting the results but my 3 month scans were clear. This treatment while hard but doable, really works. Treatment for head and neck cancer patients has come so far and is so much more effective than ever!
I recommend that you try and get most of your information from your doctors and on here and NOT from doing web searches. The searches will only scare, confuse and frustrate you. Much of the info out there is outdated and simply wrong, anybody can create a web page and make it look like they know what they are talking about.
I know your husband is going to get thru this. Just stay close to us and ask us anything you might want to ask, no question is off limits.
As far as what to ask your dr....it seems you have a pretty good idea on that:
Surgery and what kind.
Radiation and how much/long
Chemo
PEG aka feeding tube...most people end up needing one as the throat gets pretty darn sore during treatment and makes it hard to eat by mouth. Some patients however amazingly got by without needing a PEG....my heroes :-)
Staging...that will also help determine the need for chemo in most cases
Cause...HPV is a very popular culprit although there are other causes as well.
Those are some things to start with. I suggest that when you go to meet the oncologist you speak up if you have questions or simply don't understand what he's saying. You will be spending a lot of time there and it needs to be a good repor. Most of the oncologists are amazing with educating patients and bedside manner but if something isn't feeling right, speak up.
I think I've probably said more than you wanted to know, I just hope I haven't confused you. As I said earlier, this is a great place and you will be hearing from lots of us.
I'm just down the road from you a bit, well quite a ways down but at least we are in the same state haha. I'm in the Los Angeles area :-)
Take good care,
Billie0 -
Welcome Christine...
I too was STGIII SCC Tonsils and a lymphnode HPV+...
Tonsils came out first, three cycles (nine weeks) of Cisplatin, Taxotere and 5FU, that followed up with seven weeks of concurrent weekly Carboplatin, and the 35 daily rads.
As for Monday, other than take a note pad to write down questions, not much to add until you get the plan of attack...
One thing the gave me was a chemo 101 class... Gave me information sheets on each type of chemo, possible side effects, etc... More info than you want to know at the moment, LOL.
You'll find tons of support here, awesome people...
If you have some time and want to look for information at times, the first thread on this forum, SuperThread has tons of great info and links..
BTW, while all of this is veryscary, it's also very survivorable, rough but doable...
I was Dx in January 2009, finished Tx Jun2009...all clean and clear since.
Best.
John
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You're in good hands with Stanford!
I had stage 4 base of tongue cancer, with lymph node involvement, diagnosed in Jan 2010, finished treatment in May of 2010. I had surgery, radiation and chemo. I've been seeing Dr. Michael Kaplan there since day 1, and I trust that man with my life. He saved it, as a matter of fact. Where are you located in California?
Deb
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Welcome, and get ready for the ride
Everyone here is tremendously helpful and supportive, so you have found the right place--and early in what will be a long process, full of ups and downs. My own advice is to have a plan for how you and your husband are going to manage the next several months and beyond. He didn't have a choice in getting his cancer, but you both will have lots of choices and decisions to make. There are a lot of things that will be under your control, so get the best information you can to make well informed decisions. Of course, you can rely on folks here to speak from experience and knowledge of what we have learned in our own journeys.
My other advice is to know your enemy. In the short term, cancer is not your biggest enemy. It's the sometimes brutal side effects that can come from any of the three main treatment options--chemo, radiation, and surgery. Learn as much about those things as you can, and know the signs of potential side effects, so you can be ready to respond to what comes along.
Mike
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Christine
By all means trust what Phfrannie says, stay off the web, in most cases those postings go without a useful purpose except for venting on the bad stuff. The great folks on here have gone through it and as you will find out all have fared with different variations with regards to the side effects. They will be straight forward with the bad, and will be very happy to celebrate the good with you throughout you and your husbands journey. I say that because as you have already come to realize he has to go through it with you standing guard next to him.
Welcome to the club, your initiation is tough road ahead but as John states very doable. So slide on over to the driver seat because yor husband will need yo to take control for a few months while he complains about the f---ing potholes. You have to remember to remind him that is why God created blacktop..........to fill in those potholes.
Remember..........everyone on here will help you both. I found this place after my surgery but before the start of radiation and I made the mistake of not visiting until well after radiation was over because I was afraid of the world wide web thing. I will celebrate 3 years of completing radiation the day after Good Friday, you guessed it................on Good Saturday.
Enjoy the day
Jeff
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Thank you!phrannie51 said:Hello Christine....and welcome to this
wonderful group. You will find so much support here as you and hubby travel this road. At this juncture, my advice is 1) don't start searching the internet to find answers about the disease, you'll bump into wrong information, old information, and depressing information. 2) read the Super Thread (it's always at the top of our forum)....it is packed full of everything you'd ever need to know. As your man goes thru treatment, you will have many questions, and we will be here to help make that journey easier.
We'll love having you as a best friend
.p
Thank you so much for responding. I have taken your advice and will not search another site. I truly believe I've found the best one here will all of you.
Christine
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Thank you all!Duggie88 said:Christine
By all means trust what Phfrannie says, stay off the web, in most cases those postings go without a useful purpose except for venting on the bad stuff. The great folks on here have gone through it and as you will find out all have fared with different variations with regards to the side effects. They will be straight forward with the bad, and will be very happy to celebrate the good with you throughout you and your husbands journey. I say that because as you have already come to realize he has to go through it with you standing guard next to him.
Welcome to the club, your initiation is tough road ahead but as John states very doable. So slide on over to the driver seat because yor husband will need yo to take control for a few months while he complains about the f---ing potholes. You have to remember to remind him that is why God created blacktop..........to fill in those potholes.
Remember..........everyone on here will help you both. I found this place after my surgery but before the start of radiation and I made the mistake of not visiting until well after radiation was over because I was afraid of the world wide web thing. I will celebrate 3 years of completing radiation the day after Good Friday, you guessed it................on Good Saturday.
Enjoy the day
Jeff
I thank all of you for responding. I somehow feel that Alan is a little safer with all of you on his side and that is very comforting. I love that you all have a success story, yet here you are helping all of us that are just beginning the journey.
Hope your day is wonderful!
Christine
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Welcome
Christine,
Can't add anymore to the excellant advice already given. Just wanted to let you know we are all here for your husband and yourself. One day at a time. Katie
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christine, wishing u luck as
christine, wishing u luck as you travel this road. you have come to a good place as so many here have gone thru the same thing. you and hubby will be in my thots and prayers.
God bless,
deb
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welcome
Hi Christine,
Welcome to the H&N forum, so sorry you find the need to be here.
I was stage IVa, scc, bot, hpv+ with 1 lymph node, I had surgery first followed by radiation and Erbitux and I am feeling better everyday.
Stanford has Deb’s vote and that sounds good to me. Go into this with your eyes wide open and once you have a good team, you’ll have a good plan. You may have to make some treatment decisions, but the doctors will help you with them. Pretty much your questions will be about surgery (yes or no), radiation (how much, how does it work, where and side effects) and chemo (what kind, how does it work and side effects). For me they had me watch a film about cancer 101.
It is very scary at first and the reason he got cancer is who knows, but you will get through it and in a few months you will be cancer free and on the mend.
Best,
Matt
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welcome
Welcome Christine. My husband and I are new to this board. Although his diagnosis was back in January, we will only just be starting treatment next week. We went for several opinions and had Tors surgery and a neck dissection at Stanford. His recovery from surgery has been phenomenal and we have Stanford to thank for that. You are in very capable hands.
As you have already discovered, the people on this board are unbelieveably helpful and supportive, and full of wonderful advice. I don't yet have much advice to offer except I want to add to what others have said about staying off the internet. I was not able to do so and have learned a lot, but also have wasted countless hours and lots of sleep because of it. It just hasn't been that productive. You are much better off asking your doctors and people on this board what ever you want to know. And try to enjoy this time before treatment starts.
These days, I take one ativan before bed and it helps me sleep through the night a little easier. My husband usually takes one too.
If you are comfortable with it, it may help to add specific info to your profile regarding your husband's diagnosis and syptoms thus far, it may atrract people who share your specific concerns. You will find that most people here have so much in common anyway, and typically, this cancer presents itself at a later stage so most have experience doing both chemo and radiation. But perhaps your husband will not do both, there are a few people here who have had only radiation and I seem to remember one lucky dude who has had neither, surgery only.
Do you live in the Bay Area? We are over in Berkeley.
Good Luck with everything,
Helen
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HelenBack said:
welcome
Welcome Christine. My husband and I are new to this board. Although his diagnosis was back in January, we will only just be starting treatment next week. We went for several opinions and had Tors surgery and a neck dissection at Stanford. His recovery from surgery has been phenomenal and we have Stanford to thank for that. You are in very capable hands.
As you have already discovered, the people on this board are unbelieveably helpful and supportive, and full of wonderful advice. I don't yet have much advice to offer except I want to add to what others have said about staying off the internet. I was not able to do so and have learned a lot, but also have wasted countless hours and lots of sleep because of it. It just hasn't been that productive. You are much better off asking your doctors and people on this board what ever you want to know. And try to enjoy this time before treatment starts.
These days, I take one ativan before bed and it helps me sleep through the night a little easier. My husband usually takes one too.
If you are comfortable with it, it may help to add specific info to your profile regarding your husband's diagnosis and syptoms thus far, it may atrract people who share your specific concerns. You will find that most people here have so much in common anyway, and typically, this cancer presents itself at a later stage so most have experience doing both chemo and radiation. But perhaps your husband will not do both, there are a few people here who have had only radiation and I seem to remember one lucky dude who has had neither, surgery only.
Do you live in the Bay Area? We are over in Berkeley.
Good Luck with everything,
Helen
I forgot to mention that I found it useful to record the doctor visits. Sometimes it's just so overwhelming that you forget some of the info. Many times I listened to the recordings and heard stuff that I missed during the visit. I used my Iphone which automatically has that feature. Obiously, you might not have one but if you can find a way, it could help.
Helen
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AppointmentHelenBack said:I forgot to mention that I found it useful to record the doctor visits. Sometimes it's just so overwhelming that you forget some of the info. Many times I listened to the recordings and heard stuff that I missed during the visit. I used my Iphone which automatically has that feature. Obiously, you might not have one but if you can find a way, it could help.
Helen
Sorry you & your husband have to travel this road. I suggest getting a calendar/appointment book if you don't already use one. I used to be able to keep things like that in my head but the number of appts. just got overwhelming. If you can take an extra set of ears to your appt. Monday, that would be a good idea. It's hard to recall everything when you are emotional so that extra set of ears (in my case, my sister) can be very helpful. She took notes too. My advice to you now is to start fattening up your husband, any extra weight will come in handy. Throughout the tx, hydration and nutrition will play a big role.
I got thru with the philosophy of "take it as it comes and deal with it". I tried not to consume myself with worry about things or side effects that never happened to me personally.
I hope your husband's journey is not as difficult as he might anticipate.
Candi (St Louis,MO)
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We live very close to one anotherHelenBack said:welcome
Welcome Christine. My husband and I are new to this board. Although his diagnosis was back in January, we will only just be starting treatment next week. We went for several opinions and had Tors surgery and a neck dissection at Stanford. His recovery from surgery has been phenomenal and we have Stanford to thank for that. You are in very capable hands.
As you have already discovered, the people on this board are unbelieveably helpful and supportive, and full of wonderful advice. I don't yet have much advice to offer except I want to add to what others have said about staying off the internet. I was not able to do so and have learned a lot, but also have wasted countless hours and lots of sleep because of it. It just hasn't been that productive. You are much better off asking your doctors and people on this board what ever you want to know. And try to enjoy this time before treatment starts.
These days, I take one ativan before bed and it helps me sleep through the night a little easier. My husband usually takes one too.
If you are comfortable with it, it may help to add specific info to your profile regarding your husband's diagnosis and syptoms thus far, it may atrract people who share your specific concerns. You will find that most people here have so much in common anyway, and typically, this cancer presents itself at a later stage so most have experience doing both chemo and radiation. But perhaps your husband will not do both, there are a few people here who have had only radiation and I seem to remember one lucky dude who has had neither, surgery only.
Do you live in the Bay Area? We are over in Berkeley.
Good Luck with everything,
Helen
Hello Helen,
Thank you so much for your post. We live in Concord. Helen it was actually one of your earlier posts that inspired me to join this forum. Everyone was so kind and caring to you. We will have to stay in close contact since our husbands will be going through this about the same time. May I ask how soon your husband's surgery was scheduled once you'd gone to the initial visit at Stanford. I will update our profile once we learn the exact terms and such. Also....I do have an iphone and I love the idea of recording the doctors visits that is a wonderful idea. We have grown children that want to know every detail but are not able to go to all visits with us. Thank you again for everything and I will add both you and your husband to our prayers.
It's a beautiful day, enjoy the sunshine!
Christine
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Candi brought up anhwt said:Appointment
Sorry you & your husband have to travel this road. I suggest getting a calendar/appointment book if you don't already use one. I used to be able to keep things like that in my head but the number of appts. just got overwhelming. If you can take an extra set of ears to your appt. Monday, that would be a good idea. It's hard to recall everything when you are emotional so that extra set of ears (in my case, my sister) can be very helpful. She took notes too. My advice to you now is to start fattening up your husband, any extra weight will come in handy. Throughout the tx, hydration and nutrition will play a big role.
I got thru with the philosophy of "take it as it comes and deal with it". I tried not to consume myself with worry about things or side effects that never happened to me personally.
I hope your husband's journey is not as difficult as he might anticipate.
Candi (St Louis,MO)
essential for going through this treatment.....one day at a time....and only dealing with what you are facing today. Not every person deals with every side effect....and those side effects come in infinate degrees. Having some things on hand before he starts treatment will do wonders. Creams for his neck, a case of Ensure....stuff that he will need. Oh, and if you don't have an Amazon account, I'd sign up. So many things can be gotten from them that you can't find locally, if you need them. Their prices were pretty good, too. I got all my Boost drinks there.
p
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Welcome!
Sorry about the circumstances that brought you (and all of us) here, but this group is amazingly supportive and informative. Don't hesitate to post questions, progress reports, or just come here to vent when you're tired or angry. We've all been through what you and your husband experienced. I went to Stanford for my second opinion and the people there seemed great!
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Hi Christine
Sorry to hear the news but rest for sure you found the right place to get a lot of answers to most of your questions. I was lucky most of my kids were all in there teens when I first got sick and the treatment made me turn into a mean old bear so they all left. Afterward I returned to my good old mr nice guy and enjoy life with the grandkids. Wishing you and your husband all the best in care.
God Bless
Hondo
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I'm planning on that one dayphrannie51 said:Candi brought up an
essential for going through this treatment.....one day at a time....and only dealing with what you are facing today. Not every person deals with every side effect....and those side effects come in infinate degrees. Having some things on hand before he starts treatment will do wonders. Creams for his neck, a case of Ensure....stuff that he will need. Oh, and if you don't have an Amazon account, I'd sign up. So many things can be gotten from them that you can't find locally, if you need them. Their prices were pretty good, too. I got all my Boost drinks there.
p
This is wonderful advice. I never would have thought of this until I needed it. I really want to be as prepared as possible. Is there a specific cream I should get? Thank you again. And if anyone else can think if anything he may need I'd love to know it now while I have the time to go and get it.
Christine
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There are several creams to get youChristine Gabrielle said:I'm planning on that one day
This is wonderful advice. I never would have thought of this until I needed it. I really want to be as prepared as possible. Is there a specific cream I should get? Thank you again. And if anyone else can think if anything he may need I'd love to know it now while I have the time to go and get it.
Christine
started...Aquafor you can get at Walmart. I bought it, but it was so so greasy, I couldn't stand it. I used Calendula cream (suggested by the Rad doc)....picked it up at the Health Food store....I'd put on Aloe 99 first...let it dry and then use the Calendula. Aloe Vera is also good to have on hand. I also got chapstick....but not that brand....I bought Burt's Bees because it was creamier (not so waxy)....lips get pretty dry during rads.
p
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