FEELING SO HELPLESS... a tongue cancer surgery for a father-to-be
3 yrs ago, my 32yrs old husband had stage 3 nose cancer. went through radiation and chemo treatment. He has fully recovered and has been eating very carefully. I'm now 7 months pregnant. We were both happily preparing and waiting for the arrival of our baby in July.
BUT last week, he was diagnosed with stage 2 tongue cancer (SSC). According to the doctor, he cannot go for radiation and chemo because he had gone through that before. Therefore, he has to do surgery to remove the tumour which is quite a big chunk of his tongue as well as some of his lymph nodes. we were told the surgery will affect his speech and taste buds badly. we are both so depressed.
It is so unfair, he has been watching what he eats. Being a food lover, he is so upset that he can no longer taste anything for the rest of his life. And couldn't talk well as before.
It is really a tough time for us. We hug together and cried so hard. It's so painful to see him going through this. Each time he sighed and looking so gloomy and depressed, my tears just couldn't help rolling down. I know it will affect my baby but I just couldn't stop my tears. How can i help him?
Comments
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First, my heart goes out to
First, my heart goes out to you. There are people on this board that have been re-radiated so perhaps they can give you some personal insight. There also several people who have/had tongue cancer and their personal stories may give you some positive thoughts. I don't know if you are getting this diagnosis from a major cancer center but if you are not then I would get another opinion. They can do a lot with the newer types of radiation machines to limit damage to previously radiated areas so don't give up.
John0 -
I'm so sorry to hear that!jtl said:First, my heart goes out to
First, my heart goes out to you. There are people on this board that have been re-radiated so perhaps they can give you some personal insight. There also several people who have/had tongue cancer and their personal stories may give you some positive thoughts. I don't know if you are getting this diagnosis from a major cancer center but if you are not then I would get another opinion. They can do a lot with the newer types of radiation machines to limit damage to previously radiated areas so don't give up.
John
I want to echo the previous post. Get a second or even a third opinion. You should at least have the peace of mind of knowing you investigated all of the options, and that YOU two made the choice of treatment from options presented to you. This may be a case where it's worth travel or even short-term relocation for the treatment period.
I'll be thinking of you!0 -
Believe In Miracles...
Like mentioned, there are several on here than have went through re-current cancer and radiation...Longtermsurvivor (Pat), and Hondo (Tim), come to mind first.
Also, like mentioned there are several that have had SCC tongue related cancers as well.
Sorry that you have to go through this again, especially at a time of joy and the birth of your child coming up.
But keep believing in those miracles, there are several on here that are living proof that they exist.
Here's a link to the SuperThread...tons of great information and links from the various survivors and cancer warriors on this forum.
SUPERTHREAD
Best,
John0 -
Not necessarily true
there are enough different choices for chemotherapy that there is absolutely no reason chemo cannot be done. Many people can be irradiated twice nowadays. The old rule that once you have been radiated that's it no longer applies to many of us. In general you need to be 2 years or more from first radiation, and it helps to have a cancer that is not in exactly the same spot as the first one. I had base of tongue cancer in1998, treated with rads, the a second cancer of the pharynx last year (that oversimplifies a bit, but for this discussion thats close enough). I was treated with chemo-radiation a second time, completing treatment in February of this year. I agree that you need to explore the possibilities, including a major treatment center opinion, if you have been told this is not possible.
best to you
Pat0 -
So sorry
So sorry to hear your news. I am a two timer and not even a year between rads. Aug 2010 dx scc on right upper lip. One inch of lip removed, 50 stitches (ouch) rads followed. July 2011 mets to left side of neck. Neck dissection followed by rads. Never had chemo. Second rad needed to be mapped carefully. I agree with Pat, get to a teaching facility, get a second opinion. Prayers for you and your new baby. Hopefully you have people around that will be able to help you care for the baby and your hubby.0 -
I echo the words above
wishformiracle,
As you can see, there are several people that had to walk this road a few times and are here to talk about it. The others have touched on the radiation part so far for you. I will touch on the tongue and speech part of it for the moment.
Like you husband, I was told that I had a tumor on the base of my tongue and I was given options. I choose to have the tumor removed which meant losing part of my tongue. The Surgeon told me that I had the possibility of having a speech problem and having to feed myself thru the PEG Tube for the rest of my life. I am happy to say, that I am able to eat orally, not all foods that I once did, but most foods. My speech is good, I do have some trouble with some words, but everyone that knows me say that I sound like I did before.
My Radiation Oncologist told me that I healed up pretty good and that if he ever needed to, he could actually do radiation on me again. Even though the timing is lousy for this ( what time is good with cancer? ) you both have each other.
I know that it is hard right now, and I can tell you something from my heart. I too am a 2 time cancer survivor. When I found out I had cancer the 2nd time and it was just about 1 year after the base of tongue cancer, I was totally shaken. I then decided to get my head into the fight once again.
We will be here for you both, have questions? send them out and someone here more then likely will be able to give you their experience and advice.
My Best to Both of You and Everyone Here0 -
Bitter Sweet!!!
First let me congratulate you and your husband on your pregnancy; and hoping you are trying to take care of yourself during this stressful time. It definitely seems that life it bittersweet at times!!
I can't really add much more than what was already stated about getting to a major cancer center and getting second opinions, even a third!!!. But one thing I can add is look into cyberknife treatments which maybe a excellent option for your husband followed by chemo. Is he having the tongue biopsy tested for HPV? This may make a difference in treatment options?? Was his NPC tested for EBV?? Did they say if this is considered a new primary or is this a reaccurence of the original primary cancer?? I believe a new primary is a better scenario, but not sure if it makes a difference. Also, look into current cancer studies!! My prayers and thoughts are with you! There is always hope!!!!
Big Hugs!! Happy Mothers day! Try to keep your chin up!!!!
I know easier said than done!!
P.S. I would post on the oral cancer foundation web-site as well! They have a reaccurance section as well.
Charles0 -
I agree with Pat
Pat is the "message board doctor" but I imagine he is quite humble as to not announce that. But I agree with Pat! Please get a 2nd opinion.
There is a new robotic surgery now that is avaiable ....I hear it is the latest tech. that can really pinpoint a tumor.
You did not say if the last cancer was HPV positive or if this one is. Cistalin (sp) I hear is the new gold standard chemo for HPV SCC (Pat will correct me if I am wrong).
If the tumor is not in the same spot...yes, you can have radiation. I have read (again, Pat can correct) that most HPV tumors melt quite easily under radiation.
I spoke to an Eric Statler who live in Idaho and is on the board for the Oral Cancer Foundation and he is the one who told me they are trying visit doctors and tell them that Cistalin (I don't know if I have the spelling correct) along with radiation is the new "gold" standard for HPV SCC.
I strongly suggest you visit the Oral Cancer Foundation for great info as well as the link John gave you above.
As for "wishing for a miracle" ....I say let's pray for a miracle With your permission I will add you and your husband to my nightly prayer list. I really do keep one and I have grown so fond of my message board friends here on this site I can't imagine a night passing that I do not ask the good Lord to bless them with healing and strength....
Prayers coming your way. You can beat this!! Congrats on that new baby coming!
Best,
Tim / Idaho
timcogdill@yahoo.com0 -
you can do itTim6003 said:I agree with Pat
Pat is the "message board doctor" but I imagine he is quite humble as to not announce that. But I agree with Pat! Please get a 2nd opinion.
There is a new robotic surgery now that is avaiable ....I hear it is the latest tech. that can really pinpoint a tumor.
You did not say if the last cancer was HPV positive or if this one is. Cistalin (sp) I hear is the new gold standard chemo for HPV SCC (Pat will correct me if I am wrong).
If the tumor is not in the same spot...yes, you can have radiation. I have read (again, Pat can correct) that most HPV tumors melt quite easily under radiation.
I spoke to an Eric Statler who live in Idaho and is on the board for the Oral Cancer Foundation and he is the one who told me they are trying visit doctors and tell them that Cistalin (I don't know if I have the spelling correct) along with radiation is the new "gold" standard for HPV SCC.
I strongly suggest you visit the Oral Cancer Foundation for great info as well as the link John gave you above.
As for "wishing for a miracle" ....I say let's pray for a miracle With your permission I will add you and your husband to my nightly prayer list. I really do keep one and I have grown so fond of my message board friends here on this site I can't imagine a night passing that I do not ask the good Lord to bless them with healing and strength....
Prayers coming your way. You can beat this!! Congrats on that new baby coming!
Best,
Tim / Idaho
timcogdill@yahoo.com
Welcome to the forum. I am here to tell you that I lost 75% of my tongue, had it replaced with tissue/artery from my forearm, had a neck dissection and radiation and I AM DOING FINE ONE YEAR POST LAST TREATMENT DAY. You should definitely go get a second opinion from a comprehensive cancer center. as other have said, sometimes they can re-radiate. I had to have a feeding tube for 15 months, but for the last 6 months, I was adding back real food in my diet every day something new to try. Some things worked right away taste wise and some didn't. Your husband is way younger than I was, so that is definitely in your favor. Go thru some of the older posts on here and you will find others who have been thru the same and are here to talk about it. I know others will chime in here shortly. Send me a private message if you want to chat more. Wishing you the best. and congrats on the new little one.0 -
WishforIngrid K said:you can do it
Welcome to the forum. I am here to tell you that I lost 75% of my tongue, had it replaced with tissue/artery from my forearm, had a neck dissection and radiation and I AM DOING FINE ONE YEAR POST LAST TREATMENT DAY. You should definitely go get a second opinion from a comprehensive cancer center. as other have said, sometimes they can re-radiate. I had to have a feeding tube for 15 months, but for the last 6 months, I was adding back real food in my diet every day something new to try. Some things worked right away taste wise and some didn't. Your husband is way younger than I was, so that is definitely in your favor. Go thru some of the older posts on here and you will find others who have been thru the same and are here to talk about it. I know others will chime in here shortly. Send me a private message if you want to chat more. Wishing you the best. and congrats on the new little one.
Agree about the 2nd opinion at a top notch C center.
Not untypical for more rads to be a no-no with recurrence, but possibly a secondary chemo can be used. The surgery is the typical solution to recurrence, I'm sorry to say.
Tim was treated with Erbitux, I see, which has been used in Europe a lot more than in the US. Cisplatin has, in fact, been the standard chemo for H&N for over 20 years, though some may say it's longer than that. Erbitux is a secondary chemo that's more patient-friendly, and most often used as the chemo for a second round after a first round w/Cisplatin in the USA. If your husband went thru H&N some 3 years ago, he is no doubt familiar with Cisplatin and 5-FU, as almost all of us are. Thing is, Wishfor, just the chemo for a significant recurrence is not apt to take care of it, I'm sorry to say. Depends, though, on the specifics of this recurrence. Best option is at a major center, as the Johns have said. ANY TIME something drastic is to be done- wisest move is to get a 2nd at a major C center.
Know this is not the kinda news you need with all you got going-on in your lives, but it is what it is, Wishfor. Same goes for all of us. Typical guilt lies with booze and smokes for H&N, they say, and I don't know where your husband stands in regards to that- not that it really matters. All that matters is that you keep moving forward in the Positive, get this recurrence taken care of with the best option possible, and ASAP, as the time element with recurrence seems to be more critical.
Prayers
kcass0 -
ThanksKent Cass said:Wishfor
Agree about the 2nd opinion at a top notch C center.
Not untypical for more rads to be a no-no with recurrence, but possibly a secondary chemo can be used. The surgery is the typical solution to recurrence, I'm sorry to say.
Tim was treated with Erbitux, I see, which has been used in Europe a lot more than in the US. Cisplatin has, in fact, been the standard chemo for H&N for over 20 years, though some may say it's longer than that. Erbitux is a secondary chemo that's more patient-friendly, and most often used as the chemo for a second round after a first round w/Cisplatin in the USA. If your husband went thru H&N some 3 years ago, he is no doubt familiar with Cisplatin and 5-FU, as almost all of us are. Thing is, Wishfor, just the chemo for a significant recurrence is not apt to take care of it, I'm sorry to say. Depends, though, on the specifics of this recurrence. Best option is at a major center, as the Johns have said. ANY TIME something drastic is to be done- wisest move is to get a 2nd at a major C center.
Know this is not the kinda news you need with all you got going-on in your lives, but it is what it is, Wishfor. Same goes for all of us. Typical guilt lies with booze and smokes for H&N, they say, and I don't know where your husband stands in regards to that- not that it really matters. All that matters is that you keep moving forward in the Positive, get this recurrence taken care of with the best option possible, and ASAP, as the time element with recurrence seems to be more critical.
Prayers
kcass
Hi all, thanks for the info and thanks for being so encouraging.
I was hoping that they can at least shrink the tumor by radiation or chemo before the surgery to minimize the permanent damage to the taste buds and speech.
But we have seek for 2nd and 3rd opinions. Sadly, all of them said the body will not be able to take on anymore radiation. The best solution is to get rid of the tumor by surgery. I'm living in Singapore. Maybe it is their normal practice here.
We are going to see an Oncologist and a Surgeon tomorrow. But I bet they going to say the same thing.0 -
Wishfor: after my surgerywishformiracle said:Thanks
Hi all, thanks for the info and thanks for being so encouraging.
I was hoping that they can at least shrink the tumor by radiation or chemo before the surgery to minimize the permanent damage to the taste buds and speech.
But we have seek for 2nd and 3rd opinions. Sadly, all of them said the body will not be able to take on anymore radiation. The best solution is to get rid of the tumor by surgery. I'm living in Singapore. Maybe it is their normal practice here.
We are going to see an Oncologist and a Surgeon tomorrow. But I bet they going to say the same thing.
Wishfor: after my surgery (removed 75% of my tongue), I still had my taste buds and could speak perfectly...it was the radiation that killed off the taste buds (but not permanently), and although I sound funny/different to myself, everyone says I sound fine.
If surgery ends up being the only and best option, don't be afraid of it. I would do it over again in a heartbeat...the surgery was far far easier than the radiation.
Wishing you well.0 -
Check out this thread regarding radiation treatments againwishformiracle said:Thanks
Hi all, thanks for the info and thanks for being so encouraging.
I was hoping that they can at least shrink the tumor by radiation or chemo before the surgery to minimize the permanent damage to the taste buds and speech.
But we have seek for 2nd and 3rd opinions. Sadly, all of them said the body will not be able to take on anymore radiation. The best solution is to get rid of the tumor by surgery. I'm living in Singapore. Maybe it is their normal practice here.
We are going to see an Oncologist and a Surgeon tomorrow. But I bet they going to say the same thing.
Hi Nancy ...(wishformiracle) ...I read a thread from previous posts ...thought you might should check it out since some of the posts spoke of having radiation a 2nd time for recurrent cancer.
Singapore or not, get pushy if you feel you need too.
http://csn.cancer.org/node/239805
keeping you in my prayers!
Tim Cogdill / Idaho
timcogdill@yahoo.com0 -
Thanks againTim6003 said:Check out this thread regarding radiation treatments again
Hi Nancy ...(wishformiracle) ...I read a thread from previous posts ...thought you might should check it out since some of the posts spoke of having radiation a 2nd time for recurrent cancer.
Singapore or not, get pushy if you feel you need too.
http://csn.cancer.org/node/239805
keeping you in my prayers!
Tim Cogdill / Idaho
timcogdill@yahoo.com
Thanks everyone again.
Looks like our best option is surgery. None of the doctors here recommend radiation in our case.
Hi Ingrid K,
would you mind to tell me more about the feeding tube? Are you using the PEG tube? Is it painful? What kind of food can be fed through the tube? How do you make sure you get enough nutrition? Thanks.0 -
tube infowishformiracle said:Thanks again
Thanks everyone again.
Looks like our best option is surgery. None of the doctors here recommend radiation in our case.
Hi Ingrid K,
would you mind to tell me more about the feeding tube? Are you using the PEG tube? Is it painful? What kind of food can be fed through the tube? How do you make sure you get enough nutrition? Thanks.
Hi Wish... I had a PEG tube for 15 months and I was so glad I had it. It was put in during my surgery, so I never felt a thing. It never gave me any pain. The doc prescribed a special tube feeding formula (I had OSMOLITE, but there are others). It packs the calories as well as all the recommended daily nutrition he will need. It is very similar to infant formula. You can also get creative and as long as you puree food items and blend with enough water, you can put them through the tube. However, since you can't taste the food anyway, the only thing we added was powered protein (Bene-protein). Protein helps immensely in the healing process. If you use the canned feeding, the doc or a nutritionist will tell you how many cans/per day hubby will need b/4 he leaves the hospital. In my case, it was 7 cans/day. Once he starts eating real food, you can sl owly back off on the number of cans. You can also put all his meds thru the tube. In some cases, you may need to ask for liquid versions...if you have pills, you can crush them and then mix with water to put thru the tube. But the most important thing I can tell you is: MAKE SURE HE GETS ENOUGH WATER. If he can't swallow, give him ice chips to suck on to keep his swallow muscles working, and put water in thru the tube. He does not want to get himself de-hydrated. Happy to answer any other questions. just ask. also sure that others will chime in.0 -
sent you a CSN emailwishformiracle said:Thanks again
Thanks everyone again.
Looks like our best option is surgery. None of the doctors here recommend radiation in our case.
Hi Ingrid K,
would you mind to tell me more about the feeding tube? Are you using the PEG tube? Is it painful? What kind of food can be fed through the tube? How do you make sure you get enough nutrition? Thanks.
wishfor.... I sent you a private message also. Let me know if you want to chat via telephone and I will send you my number/info.0 -
wishfor...Ingrid K said:sent you a CSN email
wishfor.... I sent you a private message also. Let me know if you want to chat via telephone and I will send you my number/info.
Just chekcing in on you and your husband to see how things are going ...??
Still have you on the prayer list and looking for some good feedback from you.
Tim0 -
miracle
there are so many supportive ,intelligent and loving people on this discussion group,i hope that you are getting what you need ..the greatest of the tools is faith and hope,which we can all avail ourselves of..i'm just a survivor of tonsil/lymph cancer 1 month..i dont know much, but i figured out these guys know a lot..hang tough,for you,for your hubby,for your child ..you all deserve a life after this,and together we will help y'all get thru..0 -
My heart goes out to you and
My heart goes out to you and your husband; it unfair, and I am sorry that your husband and you have to go through this journey. Just being there with and for your husband will help him. I had BOT cancer in 2000, and my doc was able to preserve my taste sensation nerve, so I am able to taste today. So, as exploring possible treatment options has been previously suggested, you might want to explore that possibility for your husband. Also with the technology available today, is it possible that some reconstruction could be done to restore some of the removed tissue. Your husband's speech will be affected, but he will probably still have understandable speech. I wasn't as clear as I used to be, but folks, for the most part, were able to understnd me; I had a 5 cm tumor removed along with a lot of the left side of my tongue. As I am want to say, it's a challenge, but it sure beats the alternative; the most important thing is for your husband to be here for you and your child. Hang In There, you and your husband can do this.
PATRICK0 -
Thanks allpatricke said:My heart goes out to you and
My heart goes out to you and your husband; it unfair, and I am sorry that your husband and you have to go through this journey. Just being there with and for your husband will help him. I had BOT cancer in 2000, and my doc was able to preserve my taste sensation nerve, so I am able to taste today. So, as exploring possible treatment options has been previously suggested, you might want to explore that possibility for your husband. Also with the technology available today, is it possible that some reconstruction could be done to restore some of the removed tissue. Your husband's speech will be affected, but he will probably still have understandable speech. I wasn't as clear as I used to be, but folks, for the most part, were able to understnd me; I had a 5 cm tumor removed along with a lot of the left side of my tongue. As I am want to say, it's a challenge, but it sure beats the alternative; the most important thing is for your husband to be here for you and your child. Hang In There, you and your husband can do this.
PATRICK
Thanks, Tim. And thanks everyone for your replies, concerns and encouragements.
Really appreciate and grateful.
Just a little update, for the past few weeks, we have been seeking advice from several doctors. Seems like our only solution is surgery. The surgery was scheduled yesterday. However, my husband doesn't feel good to go through this surgery. We have been struggling esp for the past few days before the surgery date. After much thought and consideration, we decide to go for the alternative ways. It is not easy route. But we will go for it.0
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