hairdo
05-10-2009, 10:00 PM
My husband was just diagnosed with head and neck cancer.
I'm at a lost as to where to start.
please if anyone can offer me advice I'd appreciate it.
Thanks in advance.
:)
I'm at a lost as to where to start.
please if anyone can offer me advice I'd appreciate it.
Thanks in advance.
:)
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SamQKitty
05-11-2009, 04:10 PM
Head and neck? Is it definitely squamous cell? If so, chemotherapy make work wonderfully well. Although my cancer wasn't definitively squamous, it had similarities to squamous (also to small cell.) They used a combination of carboplatin and taxol for mine, and I'm cancer-free 8 years later.
Do you have an oncologist? First thing is to find a good oncologist...and one that you're comfortable with. Going through chemo is definitely not fun, and you need a doctor who is going to be aggressive about making sure your husband is as comfortable as possible during treatment. That means giving IV anti-nausea drugs before the chemo infusion along with medication to take for the next few days. It does no good if they just give oral anti-nausea medications "just in case", because if he does experience nausea and vomiting, he won't be able to keep the oral meds down. Giving IV anti-nausea meds along with the follow-up oral meds is a much better way to go. It also means, in many cases, recommending what to do to prevent constipation, as some chemos can cause very severe constipation, and it's easier to prevent it from happening than to deal with it once it happens.
Ask around through your friends and neighbors (and through your doctors) to find out which oncologist people recommend. Don't just assume that the "top" oncologist at the "top" hospital is the right one for you. Having had much experience at this, I am quite happy that I stayed with my mom's oncologist at our local community hospital. He is on top of all the latest research, but he's not arrogant and he's very committed to the entire patient, not just to the cancer.
Ruth
Do you have an oncologist? First thing is to find a good oncologist...and one that you're comfortable with. Going through chemo is definitely not fun, and you need a doctor who is going to be aggressive about making sure your husband is as comfortable as possible during treatment. That means giving IV anti-nausea drugs before the chemo infusion along with medication to take for the next few days. It does no good if they just give oral anti-nausea medications "just in case", because if he does experience nausea and vomiting, he won't be able to keep the oral meds down. Giving IV anti-nausea meds along with the follow-up oral meds is a much better way to go. It also means, in many cases, recommending what to do to prevent constipation, as some chemos can cause very severe constipation, and it's easier to prevent it from happening than to deal with it once it happens.
Ask around through your friends and neighbors (and through your doctors) to find out which oncologist people recommend. Don't just assume that the "top" oncologist at the "top" hospital is the right one for you. Having had much experience at this, I am quite happy that I stayed with my mom's oncologist at our local community hospital. He is on top of all the latest research, but he's not arrogant and he's very committed to the entire patient, not just to the cancer.
Ruth
mrsmediauph
05-11-2009, 04:47 PM
Do they know where the primary tumor is located? My husband is 1 month out of treatment for Stage IV "base of tongue" cancer which spread to a lymph node in his neck. His cancer is also squamous cell. Any questions, feel free to ask. Wanda
hairdo
05-11-2009, 05:15 PM
i just cry when he'My biggest problem right now is my husband, he's not sure they are right, so he's eating raw veggies and he cancelled his biopsies, the ones where they go into your throat and biopsy different places,the tongue, tonsils, etc. and we are visiting the dentist just in case it's only a abcess. he forgets that they did the needle biopsy and it came back squamous cell carcinoma. he didn't like hearing that he will have radiation five times a week for seven weeks. i told him this is normal but he said he's not ready for that yet. I just think it's so pitiful to see him trying so hard to find a different reason for this.
hairdo
05-11-2009, 05:20 PM
they want to find out the primary site but my husband is stubborn and he thinks he will find another reason why the needle biopsy came back as cancer. he doesn't even want a petscan.
SamQKitty
05-11-2009, 06:48 PM
People in denial are usually there because they are afraid. And, certainly, being diagnosed with cancer is a very frightening situation. But your husband should know that many, many cancers are, nowadays, completely curable. The problem is that the longer he delays in getting treatment, the more he puts himself at risk for the cancer becoming more aggressive and not being curable.
Perhaps you can encourage him to participate in this board and talk to some of us who have survived cancer intact? I am a 2-time survivor (Cancer of Unknown Primary, also called CUP, and bladder cancer.) The CUP was the one that had similarities to squamous and small cell. And, CUP is, by definition, always at least 2nd stage and in my particular case it was 3rd stage, having already spread beyond a lymph node. I had chemotherapy and radiation treatments and, as of this coming October, it'll be eight full years since I finished treatment, with no recurrence! The chemo was the worst of the treatment, although even that was mostly bearable. The radiation treatment for me was quite easy; although I wasn't getting radiation to the head or chest, which can cause more fatigue, I think, then radiation to the groin, which is where my tumor was. At any rate, the cancer was CURABLE...and perhaps your husband needs to know that there is tremendous hope, especially with squamous cell, for which there are excellent chemotherapies.
But in the final analysis, you probably can't force him to deal with this. The only other thing I can suggest is to have his doctor talk to him about it again. And you could always remind him of a quote from Mark Twain: "Courage is not the absence of fear; rather, it is the decision to act IN SPITE of the fear." We all have fear when we hear the word cancer...but we need to act, or it'll be fear that kills us and not the cancer.
Ruth
Perhaps you can encourage him to participate in this board and talk to some of us who have survived cancer intact? I am a 2-time survivor (Cancer of Unknown Primary, also called CUP, and bladder cancer.) The CUP was the one that had similarities to squamous and small cell. And, CUP is, by definition, always at least 2nd stage and in my particular case it was 3rd stage, having already spread beyond a lymph node. I had chemotherapy and radiation treatments and, as of this coming October, it'll be eight full years since I finished treatment, with no recurrence! The chemo was the worst of the treatment, although even that was mostly bearable. The radiation treatment for me was quite easy; although I wasn't getting radiation to the head or chest, which can cause more fatigue, I think, then radiation to the groin, which is where my tumor was. At any rate, the cancer was CURABLE...and perhaps your husband needs to know that there is tremendous hope, especially with squamous cell, for which there are excellent chemotherapies.
But in the final analysis, you probably can't force him to deal with this. The only other thing I can suggest is to have his doctor talk to him about it again. And you could always remind him of a quote from Mark Twain: "Courage is not the absence of fear; rather, it is the decision to act IN SPITE of the fear." We all have fear when we hear the word cancer...but we need to act, or it'll be fear that kills us and not the cancer.
Ruth
mrsmediauph
05-12-2009, 01:27 PM
I completely understand the denial. My husband is only 55 and had never been sick a day in his life before he was diagnosed with this. He also never smoked a day in his life and was just a casual drinker. The first couple of months after he was diagnosed he couldn't even say "cancer", he would say "the situation" or "my condition". My husband just finished 7 weeks (35 IMRT) radiation treatments and 7 weeks of Cisplatin (chemo). Tomorrow he will be 1 month out of treatment. My husband had a PEG (feeding tube) put in before treatment started. This cancer has one of the most brutal treatments but it can be beat! My husband lost 30 lbs. even with the feeding tube in - he now weighs 143 lbs. He still can't swallow or eat but hopefully things will get better soon. So far all indications are the tumor is gone. His PET scan and chest x-ray were clear before he started treatments. This cancer is very aggressive and needs to be treated ASAP. If eating raw vegetables killed it, my husband would have never gotten eat since he ate a salad every night with dinner. Good luck.
hairdo
05-12-2009, 03:38 PM
thank you so much for the support and help. my husband also never smoked but was in viet nam and worked on aircraft carriers all his life. I hope your husband stays well, and i hope you are ok. I never felt the feelings that i felt in the past two weeks, anger, pity, fright and also real sympathy for other people.
hairdo
07-10-2009, 07:52 AM
my husband's treatment is supposed to be radiation 5 times a week for 7 weeks, and chemo once a week for 7 weeks. he's decided not to have the chemotherapy i'm not happy about that but it's his decision.I just don't understand why anyone would not do everything they could to get better.They already talked about a feeding tube,I think the treatment is so harsh that he's worried.He also thinks that he can cure himself with an all vegetable and health food supplement diet, he's already lost 30 lbs from this diet and the dr is not happy.They told him he will have to stop all supplements for chemo and i think that's another reason he doesn't want chemo,he thinks the health food supplements are better than chemo. If anyone knows anything good or bad about only having radiation and not having chemo for tonsil and lymph node cancer please let me know.
mrsmediauph
07-10-2009, 10:22 AM
I'm sorry you are faced with this and that your husband isn't doing everything he can from the start to beat this. My husband is currently 12 weeks out of 7 weeks (35 treatments) radiation and 7 weeks (1 x a week) of Cisplatin. The way the doctors explained it to us was that chemo alone won't cure this cancer but it "enhances" the radiation and makes it work more effectively. My husband just had his feeding tube removed this past Monday. He lost 30 lbs. even with it in and eating is still a struggle. The main effects of this treatment are from the radiation not the chemo. Radiation blasts through your taste buds and salivary glands. He has a very small appetite and really has to force himself to eat. Nothing tastes the same and food textures are different. I know you can't control or make decisions for your husband but he really should reconsider not doing the chemo. This type of cancer is very aggressive and has a high recurrance rate.
Please do a web search under the Oral Cancer Foundation. They have a TON of information on this type of cancer along with message boards which are very active. Best wishes.
Please do a web search under the Oral Cancer Foundation. They have a TON of information on this type of cancer along with message boards which are very active. Best wishes.
wnysnowstorm
07-10-2009, 12:58 PM
I had the same surgery in 1992. Because the "margins" were bad, I needed radiation as well. The surgery was difficult, the radiation was worse. I didn't have chemo. I was 46yo and really didn't realize the seriousness of my illness. Maybe my ignorance was a good thing, because I just willed my recovery and I recovered. It wasn't till several years later that I researched the recovery and relapse rates, which were sobering.
The loss of taste buds was depressing, but they do return. I don't have much saliva, and this results in getting plugged up, but I survive. I highly recommend that your husband go to a knowledgable dental clinic, one that is associated with a major cancer center. From now on his dental care will need to be spectacular if he's to retain his teeth. I go to Roswell Park Cancer Institute in Buffalo, NY regularly for dental care. But he must look into this now, it's important.
I've really not let my problem interfere too much with my life. I'm now 63yo and I exercise and run daily. I'm in fantastic physical condition. I've found things to eat that don't cause many problems and use lots of olive oil as an aid in swallowing. The surgery is difficult, the radiation is moreso, good luck and just keep at it. Write if you like and I'll answer.
The loss of taste buds was depressing, but they do return. I don't have much saliva, and this results in getting plugged up, but I survive. I highly recommend that your husband go to a knowledgable dental clinic, one that is associated with a major cancer center. From now on his dental care will need to be spectacular if he's to retain his teeth. I go to Roswell Park Cancer Institute in Buffalo, NY regularly for dental care. But he must look into this now, it's important.
I've really not let my problem interfere too much with my life. I'm now 63yo and I exercise and run daily. I'm in fantastic physical condition. I've found things to eat that don't cause many problems and use lots of olive oil as an aid in swallowing. The surgery is difficult, the radiation is moreso, good luck and just keep at it. Write if you like and I'll answer.
hairdo
07-11-2009, 12:04 AM
Thank you for your information. I'm so frustrated with him because now he wants another doctor because he doesn't want radiation or chemo because someone he works with said he beat his cancer with diet, i think the man is a liar and i will end up a widow because my husband believes a goofball instead of the doctors.Soon i will wash my hands of the whole thing and just hope he can make a reasonable decision.All he eats is vegetables so he has already lost 30 lbs.
wnysnowstorm
07-11-2009, 11:23 AM
Thank you for your information. I'm so frustrated with him because now he wants another doctor because he doesn't want radiation or chemo because someone he works with said he beat his cancer with diet, i think the man is a liar and i will end up a widow because my husband believes a goofball instead of the doctors.Soon i will wash my hands of the whole thing and just hope he can make a reasonable decision.All he eats is vegetables so he has already lost 30 lbs.
Your husband needs to go to a national cancer center or a recognized university affiliated cancer hospital and seek advice. I'm not an oncologist, but I'm certain that "diet" will not cure throat cancer!
Your husband needs to go to a national cancer center or a recognized university affiliated cancer hospital and seek advice. I'm not an oncologist, but I'm certain that "diet" will not cure throat cancer!
SamQKitty
07-11-2009, 11:07 PM
You have my deepest sympathy, Hairdo...it is so hard to watch someone being so self-destructive. Diet may enhance his health to a certain extent, but it absolutely will not cure cancer. The worst part of this is that it is way easier to cure cancer in the earlier stages, and his stubborness is liable to delay treatment for so long that he will not have much chance of a cure later.
It really saddens me to see people (your husband isn't the only one) who are so convinced that chemo/radiation is the worst thing in the world, when I know of so many people who have been completely cured through those treatments, as I have myself. But there is, unfortunately, little you can do to force him to start treatment. You might alert his doctors to his state of mind; but other than that, I don't know what to tell you. I'll keep you and your husband in my prayers.
Ruth
It really saddens me to see people (your husband isn't the only one) who are so convinced that chemo/radiation is the worst thing in the world, when I know of so many people who have been completely cured through those treatments, as I have myself. But there is, unfortunately, little you can do to force him to start treatment. You might alert his doctors to his state of mind; but other than that, I don't know what to tell you. I'll keep you and your husband in my prayers.
Ruth
hairdo
07-12-2009, 09:53 PM
thank you for your prayers and help. He is such a good person, always helping everyone and caring for everyone. I think he just can't face the fact that he will need help. He's supposed to see the oncoligist this week for radiation simulation and a cat scan.I just hope he goes because he already is talking about cancelling the appointment.What makes it so bad is a man he works with was supposed to have lymphoma and melanoma and he swears that he cured himself and he is always telling my husband how bad doctors are and that they are usually wrong.He said he had 6 months to live and he cured himself with his diet of all raw vegetables,I think the man is full of baloney( or vegetables).I just pray everyday that he will do what he has to do.I think he must be scared of the treatment also.I admire anyone like you for going through such a harsh treatment. Thank you again for your support.