Stage 4a tonsilar cancer - newbie
Comments
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i am saddened that you and
i am saddened that you and your husband have joined us but you have stumbled upon a great resource of information and tons of friends and support
i cannot offer you an ANSWER but can offer your my experience.
my mother, 62 was also diagnosed with tonsil cancer. she had a clean PET CT, 9 nodes removed ( 1 positive), tonsillectomy ( + cancer in right tonsil) .. peg tube installed and has had 13 radiation treatments.
we were offered/recommend chemo tx. we had several discussions with our team ( oncologist and radiation specialist) about the pros/cons, risks/benefits, side effects and options.
he discussed with us at length what percentages he feels he has seen in patients with and without chemo. he strongly recommended it but also stated that other oncologists in other hospitals would not recommend it.
it was a VERY difficult decision, for mom and her loved ones .. but it was a decision she made and no matter what the outcome a decision she is at peace with .. as am i.
it does appear to me that a lot of people on here with tonsil ca .. with head and neck Ca have had chemo. however i am aware of people who have chosen not to have it ( or there docs did not recommend it) and hopefully they will chime in as well.
i very common theme in this board .. is trust in your medical team. it is never too late for a second opinion, other opinions etc. if you have doubts i would seek one and also directly ask you oncologist WHY he is not recommending chemo
P.S. i would think they would have tested for HPV before starting treatment????? testing the tumor specimen??
prayers and thoughts are with you and your husband throughout the journey. please update us and do not hesitate to continue to ask questions and share your experiences0 -
Hello
I have the same question - I would ask the radiologist why he "would find someone" to do chemo "if you wanted" vs. recommending chemo. I looked at one of my docs, and asked what he'd recommend if I were a family member.
As for testing for HPV - my doc did not check until I asked about it - he said it was because he'd recommend the same protocol whether I was positive or negative.
You'll probably hear a lot from both camps - pro and anti chemo. I am one of the folks who had juicy amounts of chemo, and I'm glad I did, and would do it again - I feel it helped me. But, as you've read many times I'm sure - we're all different. You're just as likely to hear from someone else that their docs told them that c hemo wouldn't make much of a difference.
Hoping you've got your hubby with you for another thirty years. Do well. I will say - I do think that having the tonsillectomy as an adult helps you get throught he radiation pain.0 -
Welcome!
My husband has stage 4a tonsil with left side tumor. I'm not sure about the size of the tumor. The HPV is negative. He was diagnosed last month. At first they were going to do radiation daily with chemo once every 21 days. Now it has changed to 5fu chemotherapy. He had the PICC line catheter put in last Friday. They said it would be 24 hrs daily for 4 to 5 days and two weeks off. I'm not sure how many weeks and I'm not sure when the radiation will start but he already has his mask made for it. I've read the different treatments from others on the board. I'm not sure what to expect or why he is having chemo first. My husband has his first treatment Wednesday. Tomorrow we have a chemo class together. I know they want to shrink the tumor as much as possible. This is all new but I'm sure others here will be able to give you some of their input with the types of treatments they had. My husband still has not had the PEG. I think he believes it's not necessary until the radiation starts. I hope I can get more information about the PEG tomorrow. He is not happy at all about the PEG.
Best of luck to you and your husband.
Donna0 -
Olybee
I was diagnosed with the same thing as your husband, but I was right tonsil with mets to two nodes on the right side. I had surgery and went through treatment at UW Medical Center and the Seattle Cancer Care Alliance (SCCA). I was tested, and came back positive, for HPV 16. I have a friend who is being treated at another hospital on the eastside and from what I've been hearing from him, they weren't aggressive enough on his first go 'round and now he's facing hospice. Unless there is a medical reason why your husband isn't getting chemo, I would question the docs decision on this. You really don't want to ****-foot around with this. Treatment sucks and he's probably not feeling up to being his own advocate at the moment.
I'm 6 months post-treatment and feeling great. There is a light at the end of the tunnel.
Good Luck!
Grace0 -
Best Answer
First welcome to the forum....
Best for your hubby, who can really say....
I had similar SCC STGIII HPV+ Tonsils (right) and a lymphnode on that same side. Like your hubby, I had the tonsils out, port installed, I didn't have the PEG though.
Nine weeks (three week cycles) of Cisplatin, Taxotere and 5FU from a pump for a few days), all of that each three weeks cycle.
Then seven weeks of concurrent where I had weekly Carboplatin, and daily (35) rads sessions.
Who is really to say what is best...for me that's the protcul they decided to be most effective. Not saying it is or isn't....
The feeling was that other than having cancer I was in good health, and fairly young at 56. So they decided to hit it as hard as my body could take it with the hopes of completely eliminating it.
So far so good, that treatment ended in June 2009 (Dx in January 2009). All scans have been clean and clear, praying they stay that way.
Definitely rough, but very doable, many others on here have had similar Rx.
Thoughts and Prayers,
John0 -
Samedepressed63 said:Welcome!
My husband has stage 4a tonsil with left side tumor. I'm not sure about the size of the tumor. The HPV is negative. He was diagnosed last month. At first they were going to do radiation daily with chemo once every 21 days. Now it has changed to 5fu chemotherapy. He had the PICC line catheter put in last Friday. They said it would be 24 hrs daily for 4 to 5 days and two weeks off. I'm not sure how many weeks and I'm not sure when the radiation will start but he already has his mask made for it. I've read the different treatments from others on the board. I'm not sure what to expect or why he is having chemo first. My husband has his first treatment Wednesday. Tomorrow we have a chemo class together. I know they want to shrink the tumor as much as possible. This is all new but I'm sure others here will be able to give you some of their input with the types of treatments they had. My husband still has not had the PEG. I think he believes it's not necessary until the radiation starts. I hope I can get more information about the PEG tomorrow. He is not happy at all about the PEG.
Best of luck to you and your husband.
Donna
I had right side tonsil. I had the 5fu and on week three a big dose of DDP (which I nicknamed DDT). Due to the DDP I did have a port installed vs the pic line which made treatment much easier and didn't destroy my veins. Happiest day I had was when I was able to drive my car over the mask...
Good luck to all.0 -
My husband and I just had
My husband and I just had this discussion and if we had to do it over again, he would have had chemo during radiation. He had SCC in tonsil with met to one node in neck. We were told that he only needed radiation and surgery but we could opt for chemo if we wanted. We were told that because only one node in neck was malignant and it was very small that it was very small chance that cancer had spread elsewhere. Four months after radiation, he has 14 nodes on right lung and 6 on left lung, with one two-inch mass on left. Hit us like a sledge hammer. We were told that it took only one small cell to scurry out of the head/neck region and create the new mess we are in. That cell could have been killed with chemo during radiation. I know there is mixed thinking on chemo and radiation but I say..don't take the chance. My hubby is now going through chemo or carboplatin, erbitux and docetaxil. It's no fun. But what is worse is that his prognosis now is: no cure.0 -
WOW...nwsunni said:My husband and I just had
My husband and I just had this discussion and if we had to do it over again, he would have had chemo during radiation. He had SCC in tonsil with met to one node in neck. We were told that he only needed radiation and surgery but we could opt for chemo if we wanted. We were told that because only one node in neck was malignant and it was very small that it was very small chance that cancer had spread elsewhere. Four months after radiation, he has 14 nodes on right lung and 6 on left lung, with one two-inch mass on left. Hit us like a sledge hammer. We were told that it took only one small cell to scurry out of the head/neck region and create the new mess we are in. That cell could have been killed with chemo during radiation. I know there is mixed thinking on chemo and radiation but I say..don't take the chance. My hubby is now going through chemo or carboplatin, erbitux and docetaxil. It's no fun. But what is worse is that his prognosis now is: no cure.
So sorry for the way things worked out....
Just remember that we all are different, and never ever give up hope or the power of positive thinking....
Thoughts & Prayers,
John0 -
Wow !nwsunni said:My husband and I just had
My husband and I just had this discussion and if we had to do it over again, he would have had chemo during radiation. He had SCC in tonsil with met to one node in neck. We were told that he only needed radiation and surgery but we could opt for chemo if we wanted. We were told that because only one node in neck was malignant and it was very small that it was very small chance that cancer had spread elsewhere. Four months after radiation, he has 14 nodes on right lung and 6 on left lung, with one two-inch mass on left. Hit us like a sledge hammer. We were told that it took only one small cell to scurry out of the head/neck region and create the new mess we are in. That cell could have been killed with chemo during radiation. I know there is mixed thinking on chemo and radiation but I say..don't take the chance. My hubby is now going through chemo or carboplatin, erbitux and docetaxil. It's no fun. But what is worse is that his prognosis now is: no cure.
I'm so sorry to hear about that situation with your husband. I pray that he will make it, and the chemo will do it's thing. I have my 2 year post-treatment PET Scan read to me tomorrow, and I really wish I hadn't read your post. They threw every canon, grenade, and kitchen sink at me for treating my left tonsil SCC. I'm not sure if I could go through all that again. But, if I had to..........I'm sure I would.
Larry0 -
Hi John -- Thanks for theSkiffin16 said:WOW...
So sorry for the way things worked out....
Just remember that we all are different, and never ever give up hope or the power of positive thinking....
Thoughts & Prayers,
John
Hi John -- Thanks for the encouragement. Actually, he considered not opting for treatment and choosing instead to use the remaining time in as fun a way as possible. Either path, though, is a difficult one -- what with chemo and side-effects or no chemo and the body failing quickly. Talk about a hard choice. And that has been combined with our anger, shock and overwhelming sadness that the cancer spread so fast. It's been surreal. Nevertheless, he is doing chemo and we are becoming students of the approach found at the Block Center for Integrative Cancer Treatment. (Easy to find online) We're not a patient there -- too far -- but the diet they advance is intriguing. We're now on treatment #3 and so far, he has the horrible erbitux rash but no shortness of breath. Doctor thinks that tumors have slowed in growth based on symptoms but we won't know anything definitive until a scan is done. And yes, we pray. But what really blows me away is that he has told me that if treatment fails, he will use assisted suicide by physician, which is legal in our state. Hard for me to believe we are even discussing that.0 -
Oh I am so sorry to haveCajunEagle said:Wow !
I'm so sorry to hear about that situation with your husband. I pray that he will make it, and the chemo will do it's thing. I have my 2 year post-treatment PET Scan read to me tomorrow, and I really wish I hadn't read your post. They threw every canon, grenade, and kitchen sink at me for treating my left tonsil SCC. I'm not sure if I could go through all that again. But, if I had to..........I'm sure I would.
Larry
Oh I am so sorry to have affected you in that manner. Keep in mind that they did throw the "kitchen sink" at you. I bet that you have nothing to worry about -- after all if they did systemic treatment, betcha they got all of the little buggers. Hope you will post back and let us know how things go.
As I did write to John, we're becoming rather fanatical about the approach advocated by the Block Center. Actually, our own oncologist pointed us to Dr. Block's work. The diet information fascinates us. If we should get some extra time, I know we'll be sticking to that diet as much as possible. It's a no red meat/high phytonutrients/anti-cancer diet, which is kinda hard for my meat-potato guy but too much is at stake to not try it. I'm already nearly vegan so it wasn't as hard for me. Our doc, nutritionist and I are all reading concurrently Blocks book "Live Over Cancer." Kinda cool.
I know I sound strong here but that's only because we have already gone through all the wall-hitting, screaming, crying, and every other emotion possible. We've decided to cut that out, have s*x as often as possible, laugh as often as we can, travel back-roads, and keep fighting.0 -
Chemonwsunni said:Hi John -- Thanks for the
Hi John -- Thanks for the encouragement. Actually, he considered not opting for treatment and choosing instead to use the remaining time in as fun a way as possible. Either path, though, is a difficult one -- what with chemo and side-effects or no chemo and the body failing quickly. Talk about a hard choice. And that has been combined with our anger, shock and overwhelming sadness that the cancer spread so fast. It's been surreal. Nevertheless, he is doing chemo and we are becoming students of the approach found at the Block Center for Integrative Cancer Treatment. (Easy to find online) We're not a patient there -- too far -- but the diet they advance is intriguing. We're now on treatment #3 and so far, he has the horrible erbitux rash but no shortness of breath. Doctor thinks that tumors have slowed in growth based on symptoms but we won't know anything definitive until a scan is done. And yes, we pray. But what really blows me away is that he has told me that if treatment fails, he will use assisted suicide by physician, which is legal in our state. Hard for me to believe we are even discussing that.
Like I said, don't give up and believe in the miracles of modern medicine, along with faith. Actually chemo isn't that bad on everyone. I hardly had any difficulties.
Also, the tumor I had completely dissolved away during chemo...so don't give up and keep positive thoughts...
Best,
John0 -
HPV testbpell0402 said:i am saddened that you and
i am saddened that you and your husband have joined us but you have stumbled upon a great resource of information and tons of friends and support
i cannot offer you an ANSWER but can offer your my experience.
my mother, 62 was also diagnosed with tonsil cancer. she had a clean PET CT, 9 nodes removed ( 1 positive), tonsillectomy ( + cancer in right tonsil) .. peg tube installed and has had 13 radiation treatments.
we were offered/recommend chemo tx. we had several discussions with our team ( oncologist and radiation specialist) about the pros/cons, risks/benefits, side effects and options.
he discussed with us at length what percentages he feels he has seen in patients with and without chemo. he strongly recommended it but also stated that other oncologists in other hospitals would not recommend it.
it was a VERY difficult decision, for mom and her loved ones .. but it was a decision she made and no matter what the outcome a decision she is at peace with .. as am i.
it does appear to me that a lot of people on here with tonsil ca .. with head and neck Ca have had chemo. however i am aware of people who have chosen not to have it ( or there docs did not recommend it) and hopefully they will chime in as well.
i very common theme in this board .. is trust in your medical team. it is never too late for a second opinion, other opinions etc. if you have doubts i would seek one and also directly ask you oncologist WHY he is not recommending chemo
P.S. i would think they would have tested for HPV before starting treatment????? testing the tumor specimen??
prayers and thoughts are with you and your husband throughout the journey. please update us and do not hesitate to continue to ask questions and share your experiences
We were told they didn't know it was HPV 16 for sure - the test is expensive, and it wouldn't matter one way or the other for the treatment. Since the surgery was 4/20, do you think it is too late to say, hey, we just want to know, so test it??0 -
chemo/radiation/surgery??depressed63 said:Welcome!
My husband has stage 4a tonsil with left side tumor. I'm not sure about the size of the tumor. The HPV is negative. He was diagnosed last month. At first they were going to do radiation daily with chemo once every 21 days. Now it has changed to 5fu chemotherapy. He had the PICC line catheter put in last Friday. They said it would be 24 hrs daily for 4 to 5 days and two weeks off. I'm not sure how many weeks and I'm not sure when the radiation will start but he already has his mask made for it. I've read the different treatments from others on the board. I'm not sure what to expect or why he is having chemo first. My husband has his first treatment Wednesday. Tomorrow we have a chemo class together. I know they want to shrink the tumor as much as possible. This is all new but I'm sure others here will be able to give you some of their input with the types of treatments they had. My husband still has not had the PEG. I think he believes it's not necessary until the radiation starts. I hope I can get more information about the PEG tomorrow. He is not happy at all about the PEG.
Best of luck to you and your husband.
Donna
did your husband have neck dissection? Perhaps that's the difference - the tumor was removed, so chemo is given if surgery didn't happen?
For those of you who did have chemo, how much worse was it than the radiation??
Sorry to ask so many Qs, but it is all so overwhelming, and who better to ask than the actual poor souls who have had to undergo all of this. THANKS FOR YOUR HELP!0 -
So sorry to hear about yournwsunni said:My husband and I just had
My husband and I just had this discussion and if we had to do it over again, he would have had chemo during radiation. He had SCC in tonsil with met to one node in neck. We were told that he only needed radiation and surgery but we could opt for chemo if we wanted. We were told that because only one node in neck was malignant and it was very small that it was very small chance that cancer had spread elsewhere. Four months after radiation, he has 14 nodes on right lung and 6 on left lung, with one two-inch mass on left. Hit us like a sledge hammer. We were told that it took only one small cell to scurry out of the head/neck region and create the new mess we are in. That cell could have been killed with chemo during radiation. I know there is mixed thinking on chemo and radiation but I say..don't take the chance. My hubby is now going through chemo or carboplatin, erbitux and docetaxil. It's no fun. But what is worse is that his prognosis now is: no cure.
So sorry to hear about your situation now. I hope you have quality of life together for as long as possible.
thanks for the input0 -
does anyone know, does itGraceLibby said:Olybee
I was diagnosed with the same thing as your husband, but I was right tonsil with mets to two nodes on the right side. I had surgery and went through treatment at UW Medical Center and the Seattle Cancer Care Alliance (SCCA). I was tested, and came back positive, for HPV 16. I have a friend who is being treated at another hospital on the eastside and from what I've been hearing from him, they weren't aggressive enough on his first go 'round and now he's facing hospice. Unless there is a medical reason why your husband isn't getting chemo, I would question the docs decision on this. You really don't want to ****-foot around with this. Treatment sucks and he's probably not feeling up to being his own advocate at the moment.
I'm 6 months post-treatment and feeling great. There is a light at the end of the tunnel.
Good Luck!
Grace
does anyone know, does it matter if the chemo isn't started until he's going through radiation? We're in week 3 of radiation, haven't talked about chemo, but now I'm ready to have a strong conversation with the oncologist when we meet tomorrow0 -
TREATMENT OPTIONS
Hi, I was diagnosed with Tonsil CA with Mets to the neck. Stage 4-2-B.
I am 46 and in good health otherwise, so my Medical Team recommended to do surgeries to remove the Tonsil and to remove 24 Lymph Nodes, of which 19 tested positive for CA. I also did 35 radiation treatments and dis 3 rounds of Cisplatin during radiation. This was the hardest thing I have ever endured, and still have and probably always will deal with some side effects from treatment.
I am glad that I chose to hit the beast head on with everything the medical community could throw at it. I will be 8 months post treatment next week and CT scans of my Chest and Neck this past Monday came back clean.
Best!!
Mike0 -
Newbie
So sorry you have to join our "club" but you will find a lot of help as you go through treatment. My husband, Buzz, had tonsilar cancer 9 years ago and had surgery involving a tonsillectomy and right neck dissection with 28 nodes removed, 2 of which were cancerous. He then had 6 weeks of radiaiton to the right side of his neck. A very small number (I am not trying to scare you) develop a second primary and he was diagnosed with base of tongue cancer last summer with 1 positive node in the left neck. This time he had chemo and radiation. He finished treatment in January. The standard of care in you case may be radiation and surgery but a second opinion would clarify you options. Take care. Karen0
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