Newbie
I was just diagnosed with SCC (HPV+) with bilateral lymph nodes involved. From what I've been able to find, I'm guessing it will be Stage IV. The ENT surgeon told me throat cancer but described the abnormal area as "large" going from my right tonsil, base of my tongue, up to (and including part of) my epiglottis. I had a PET scan completed yesterday and will be meeting with medical oncology monday morning and radiation oncology Tuesday to set up treatment.
I have read through a lot of helpful information but wondered if any one has suggestions on what things to make sure I ask the doctors or even just words of advice??? It's been a lot to take in and being a single mom with 3 small children, I don't get a lot of free time to sit and let things absorb!
PS... I just read through the length of survival thread....AMAZING! Definitely gave me the hope and inspiration I needed tonight!
Comments
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Welcome
Jamie Ann, sorry to hear of you joining our club. A couple of things off the top of my head:
Take notes, you will be overloaded with information, all strange and unfamiliar. Impossible to remember it all.
If you don't understand something, anything, don't hesitate to ask them to
explain again and again until you are clear.
Best of luck to you Jamie Ann. Cheers
Jimbo0 -
we believe in you
Jamie, I had your same diagnosis four years ago. They put me on a chemo called Erbitux for six weeks and six weeks of twice a day radiation. There were times when I felt like it was all too much, but you just put one foot in front of the other and make yourself continue on. And our caregivers, ususally our spouse, but there are plenty of others, are the most wonderful people in the world. Someone I trusted asked me how I planned on being the better for having gone through this. That challenge floored me, and it still haunts and drives me today.
Spit in this beast's eye and overcome it. And when they mention a PEG tube, don't hesitate, just say "yes".0 -
The Group
Jamie,
I agree with the others, sorry to hear that you are here seeking advice for your cancer. But, you have found a good site to listen, learn and ask questions that you might forget to ask when you are in the Doctor's office and also pick out questions to ask before getting there as well.
I do have a little suggestion if it is possible for you, to take along someone you know well to take notes and listen to what the Doctor's have to say. As mentioned above, there is allot to take in during a short period of time. Another set of ears doesn't hurt.
My Best to You and Everyone Here0 -
Newbie
When we were newbies, this forum helped me, the caregiver, immensely. Lots of questions just don't always get answered. We opted to have chemo and radiation. Surgery was just too daunting to consider. Buzz also had a large tumor on the base of his tongue, classfied as Stage IV. Three months after the end of treatment, the scan shows the tumor is gone! There is hope. You will need the support of family and friends and someone should go with you to each appointment. You might not hear everthing given your emotions as you try to absorb everything. Take care and know that we are here for you! Karen0 -
Welcome
Hi Jamie,
Sorry to read about your new diagnosis. This board can offer a lot of support as you're going through treatment. Lots of experience here.
The only thing I have to suggest is get a 2nd and a 3rd opinion on both diagnosis and recommended treatment. It would be good if at least one of those came from a major cancer treatment center. It would also be worthwhile to start looking into alternative therapies that will support the chemo/rads. Things like accupuncture, massage, diet and nutrition, yoga, supplements. All of these will help get you through treatment and will enhance the treatments themselves. Let us know how it goes. Someone is always here.
Bob0 -
Welcome.adventurebob said:Welcome
Hi Jamie,
Sorry to read about your new diagnosis. This board can offer a lot of support as you're going through treatment. Lots of experience here.
The only thing I have to suggest is get a 2nd and a 3rd opinion on both diagnosis and recommended treatment. It would be good if at least one of those came from a major cancer treatment center. It would also be worthwhile to start looking into alternative therapies that will support the chemo/rads. Things like accupuncture, massage, diet and nutrition, yoga, supplements. All of these will help get you through treatment and will enhance the treatments themselves. Let us know how it goes. Someone is always here.
Bob
Hi Jamie. I agree with having a person come with you to take notes, and I would also write down anything you want to ask so you don't forget. If you haven't done it yet, I would peruse the HNC Superthread on the first page of this board. It might answer some of the questions you have, and help you come up with others.
Sorry you have need of our little club, but glad you found it before treatment. There are so many people here that are very knowledgable and supportive. Wish I found this group earlier, as it was a great help to me.
Blessings,
Sweet0 -
Welcome!sweetblood22 said:Welcome.
Hi Jamie. I agree with having a person come with you to take notes, and I would also write down anything you want to ask so you don't forget. If you haven't done it yet, I would peruse the HNC Superthread on the first page of this board. It might answer some of the questions you have, and help you come up with others.
Sorry you have need of our little club, but glad you found it before treatment. There are so many people here that are very knowledgable and supportive. Wish I found this group earlier, as it was a great help to me.
Blessings,
Sweet
Hi Jamie, I want to offer you all the love and support I can! You're a single mom with 3 kids, sounds like you're as tough as they get already! Take care and use this site to the best of your advantage!
Love, Kristyn0 -
Thank you
Thank you everyone for the warm welcome. I will definitely make sure someone comes with me next week. I have some knowledge of the process as I just lost my dad to this same cancer 18 months ago. At first I was really devestated, but after finding this board and reading through your posts and stories, it really gave me HOPE!
I am in the process of setting up a second opinion, mostly because the ENT surgeon said he did not see a surgical benefit for my case. Just want to make sure that's the right answer as it seems like that is a first step in most cases. :-)
Also, I did see the superthread and have already been taking notes on which things everyone seemed to have the best luck with. I'm in for the long haul so I look forward to getting to know everyone.0 -
Their's no place like this place!Jamie_Ann said:Thank you
Thank you everyone for the warm welcome. I will definitely make sure someone comes with me next week. I have some knowledge of the process as I just lost my dad to this same cancer 18 months ago. At first I was really devestated, but after finding this board and reading through your posts and stories, it really gave me HOPE!
I am in the process of setting up a second opinion, mostly because the ENT surgeon said he did not see a surgical benefit for my case. Just want to make sure that's the right answer as it seems like that is a first step in most cases. :-)
Also, I did see the superthread and have already been taking notes on which things everyone seemed to have the best luck with. I'm in for the long haul so I look forward to getting to know everyone.
Hi Jamie, I wanted to let you know my wife Connie got the same diagnosis in Oct. 2010, SCC HPV+ with local lymph nodes involved. It hit us both pretty hard. Connie has finished her chemo and radiation treatments at MD Anderson Cancer Treatment Center as of Mar.17,2011. Connie's doctor told us the same thing, her treatment would start with 9 weeks of chemotherapy followed by 7 weeks of radiation. We were disappointed as we thought surgery would get rid of the cancer quicker and we wanted it gone asap. She had 2 lymph nodes that were so swollen they were literally trying to break through the skin. After her 1st induction chemo treatment though, her lymph nodes shrunk to normal size and her neck was back to normal in a week. Her chemo doctor said she had a dramatic response and I pray you have one too. Some people will tell you that surgery is the best way to go but since her tumors reacted so positive to the chemo, I am glad she didn't have surgery. Connie did have a peg tube installed which has been a blessing for her to get the nutrition she needs as the radiation treatments effect your taste, saliva and ability to swallow. These symtoms are temporary but we are still waiting for the day when she will eat normal again. Connie had a ct scan after chemo and no tumors were detected but she still had radiation just to be on the safe side. I have been praying that her ct scan on May 5th will come back "all clear" and we will be able to spend a long life together. I hope you have a lot of support from family and friends as their will be some "ups and downs" involved in your treatment. It will all be worth it though to see your children grow up, graduate, marry and enjoy your grandkids someday! With Lots of Love, Homer & Connie0 -
Another vote for
Taking notes and bringing a second person to doc visits. I missed stuff and got info wrong when I went in myself, ending up in fun stuff like miscalculating my wean and going through a short but rather unpleasant pain meds withdrawal after treatment was over. Two sets of ears are better if you can manage it!0 -
TReatmentsJamie_Ann said:Thank you
Thank you everyone for the warm welcome. I will definitely make sure someone comes with me next week. I have some knowledge of the process as I just lost my dad to this same cancer 18 months ago. At first I was really devestated, but after finding this board and reading through your posts and stories, it really gave me HOPE!
I am in the process of setting up a second opinion, mostly because the ENT surgeon said he did not see a surgical benefit for my case. Just want to make sure that's the right answer as it seems like that is a first step in most cases. :-)
Also, I did see the superthread and have already been taking notes on which things everyone seemed to have the best luck with. I'm in for the long haul so I look forward to getting to know everyone.
Hi Jamie,
I was in a similar boat but not as advanced so i opted for Surgery first, and then Erbitux and IMRT (Intensity Modulated Radio Therapy). Figured if they could cut it out first, then do that, and then mop up with the Chemo and Rads. Erbitux is actually called Target Therapy as it's more of a Bio agent to stimulate an immune response.
Yours is a difficult one for surgery so they will probably suggest they shrink it with Rads (Get IMRT if you can) and then reassess if surgery is needed or an option.
The rads knocked me around pretty badly but I am 18 mths out and kicking butt. You can do it. Stay positive, convince yourself you will survive and get through it. I also focused on diet and supplements once I was through treatment. There is plenty of info about 'Anti-Cancer' diets. PM me if you need further direction there. Diet is hard through treatment as you eat whatever you can. I used a plant based nutritional supplement and put that through the PEG as I couldn't take food by mouth from about week 3 of the 7 weeks of treatment. That kept me going.
Hang in there Jamie and use the friends here on the h&N CSN board to help you through no matter what you need, just ask.
Scambuster
SCC left Tonsil + 2 nodes Aug 2009.0 -
HI JamieBrianKrashpad said:Another vote for
Taking notes and bringing a second person to doc visits. I missed stuff and got info wrong when I went in myself, ending up in fun stuff like miscalculating my wean and going through a short but rather unpleasant pain meds withdrawal after treatment was over. Two sets of ears are better if you can manage it!
Go into the treatment with a kick a## attitude. Go in saying I will beat this crap, whatever it takes. We're here for support when you need it.
all the best during treatment,
Steve0 -
Hello
If you're a single mom, you already have lots of the "training" you need to get through treatment - you're used to doing things that you don't want to do, don't know if you CAN do, and wouldn't consider doing IF you had a choice, but you do them cause they have to get done.
When I was diagnosed with stage four base of tongue cancer with two lymph nodes involved, I was very disappointed that all docs I consulted said "no surgery up front". Like you, it seemed to me it'd be better to get rid of it right away, then mop up stragglers with chemo and rads. One doc I consulted even said they'd do surgery first UNTIL his superior looked at my scans and told him "no".
After googling info, and figuring I was a goner, I found this website and its WONDERFUL GROUP OF PEOPLE. I was raised to think that stage four cancer was meant you were definately dying - just a question of when, and the when would not be years down the road. So pleased to learn times have changed.
I'm with the others, take at least one other person with you to your appointment tomorrow (hopefully a level-headed person who won't cry or become too stressed), write down questions before you go, and do not feel bad about asking questions - you're not an idiot, you just haven't been exposed to this before, so of course you don't know what they're talking about. You are not wasting the doctor or nurse's time - YOU PAY THEM.
Come here often - you already know you can get lots of good info from folks here. They are also a shoulder when you need support, and backup chorus when you need to scream in defiance. Do well.0 -
Hello Jamie!Pam M said:Hello
If you're a single mom, you already have lots of the "training" you need to get through treatment - you're used to doing things that you don't want to do, don't know if you CAN do, and wouldn't consider doing IF you had a choice, but you do them cause they have to get done.
When I was diagnosed with stage four base of tongue cancer with two lymph nodes involved, I was very disappointed that all docs I consulted said "no surgery up front". Like you, it seemed to me it'd be better to get rid of it right away, then mop up stragglers with chemo and rads. One doc I consulted even said they'd do surgery first UNTIL his superior looked at my scans and told him "no".
After googling info, and figuring I was a goner, I found this website and its WONDERFUL GROUP OF PEOPLE. I was raised to think that stage four cancer was meant you were definately dying - just a question of when, and the when would not be years down the road. So pleased to learn times have changed.
I'm with the others, take at least one other person with you to your appointment tomorrow (hopefully a level-headed person who won't cry or become too stressed), write down questions before you go, and do not feel bad about asking questions - you're not an idiot, you just haven't been exposed to this before, so of course you don't know what they're talking about. You are not wasting the doctor or nurse's time - YOU PAY THEM.
Come here often - you already know you can get lots of good info from folks here. They are also a shoulder when you need support, and backup chorus when you need to scream in defiance. Do well.
This is a great site with wonderfull people. We all try to help each other with different advice & opinion's. Make sure if you are offered help to take it no matter how proud you are. Make sure to bring someone with you to your appointment's & write everything down. I did not remember a thing going through my treatment etc. Remember we are all here to help each other & I wish you great success with your treatment & recovery!
God Bless!
Roz0 -
Talk about pain medications
I had Stage II Cancer, mostly confined to a vocal cord. Treated with radiation only. I would ask a lot of questions about pain medications. And the pain medication's side effects, which are usually drowsiness. I opted for a short-acting med, which I took by mouth every 4 hours. It gave me one hour were the pain was reduced (but not gone). I could eat during that hour. For the other 3 hours, I did not even swallow. I spit into a tissue. Those hours were practically "pain-free". Well, not totally pain-free. I kept a clear head through most of the day; although I was too sedated to drive.
I think the option I choose would be best for a very few patients. Most patients use a patch which is replaced on a daily basis. And a patch might be safer with children in the house (rather than a "good-tasting" liquid narcotic). I'm 67; and all my children are grown. Nevertheless, I think it is good to know the pain options.
I THINK YOU NEED TO ASK HOW SEDATED THE PAIN MEDICATION WILL MAKE YOU. The answer, of course, is that nobody knows. Everyone is different.
Rick
I guess I should add that the radiation treatments themselves do not hurt.0
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