Surgery vs No surgery

NJMOM

I have read many of your stories and I know that each case is different. The day my husband had his biopsy the ENT told me that it's not an area they can operate on because of where it is and that chemo and radiation with the possibility of seed implants after treatment are the course of treatment. From some of your stories it appears as though some of you have indeed had surgery for the same cancer, so why do you think we were told no surgery. Local hospital versus cancer specialist centers?? I wish he would have had a second opinion before we started treatment but he didn't want to wait to start treatment and there was a 6+ week waiting period to get into Sloan Kettering. 

Ladylacy

Second Opinion

I would get a second opinion and even a third, if necessary.  This can be done during treatment or schedule one for when treatment is thru.  Also you need to see a head and neck specialist who has had a lot of experience with your husband's type of cancer.  I wish we had seen one first but that's hindsight.  We were referred to one after the first round of treatment failed, and he was great.  I often wonder how things would have turned out if we had gotten a second opinion instead of staying with our local ENT.

Wishing you and your husband the best -- Sharon

slk2015

Surgery or no surgery

I agree that a second and maybe third opinion is in order.  However, one of my relatives had throat/back of the tongue cancer and was told had the mass been half a centimeter further back, he would have been sent home and told there was nothing they could do.  Surgical removal of cancer is very dependent on the size and location of the mass.  A tiny bit in any direction and surgery may not be an option.

NJMOM

Ladylacy said:

Second Opinion

I would get a second opinion and even a third, if necessary.  This can be done during treatment or schedule one for when treatment is thru.  Also you need to see a head and neck specialist who has had a lot of experience with your husband's type of cancer.  I wish we had seen one first but that's hindsight.  We were referred to one after the first round of treatment failed, and he was great.  I often wonder how things would have turned out if we had gotten a second opinion instead of staying with our local ENT.

Wishing you and your husband the best -- Sharon

Second guessing

When I called SK they said they wouldn't even look at him while he was receiving treatment. They said when he's done with the proposed plan of treatment then if we want them to see my husband we can be seen by them. As I stated, my husband didnt want to delay treatment by even a few days so to wait 2 months was not an option as far as he was concerned. You would think that once you have been definitely diagnosed with cancer, that one of the cancer hospitals would take you quicker than two months. I think you always second guess yourself and that's why when I see stories of people who have had surgery I wonder why they had it and he can not. I think I'd feel better if they could cut it out to begin with or partially cut it out and then attack it with chemo and radiation.  The waiting to find out if we're making any progress is the hardest part right now!

ratface

Ladylacy said:

Second Opinion

I would get a second opinion and even a third, if necessary.  This can be done during treatment or schedule one for when treatment is thru.  Also you need to see a head and neck specialist who has had a lot of experience with your husband's type of cancer.  I wish we had seen one first but that's hindsight.  We were referred to one after the first round of treatment failed, and he was great.  I often wonder how things would have turned out if we had gotten a second opinion instead of staying with our local ENT.

Wishing you and your husband the best -- Sharon

We can make generalizations

We can make generalizations all day long but at the end of the day your husband is a very distinct individual. His physical attributes, tumor size, location, grading, medical history, etc will all paint a unique portrait. His treatment should be tailored accordingly. I have heard of robotic surgery using the Davinci robot for BOT but it may not be appropriate for your husband, there are parameters for every surgery. There are basic ENT's and there are cancer ENT specialist. You can shop for one if and when surgery is needed. How was the treatment decision reached for your husband? Was a tumor Board involved? This cancer in many respects is incremental treatment. It may be the case that surgery in his case could be more destructive than chemo/Radiation. In response to your question about world class hospitals and small local hospitals my personal experience was to use a local hospital for generalized treatment and seek a specialized skill set for surgery.  I had great treatment at both facilities. It's good to ask questions here so you can arm yourself for questions for his doctor. You will be his best advocate in the long run. A healthy dose of questioning with an equal healthy dose of reasonableness is required. Sounds like he is in good hands with you. All the best. 

NJMOM

ratface said:

We can make generalizations

We can make generalizations all day long but at the end of the day your husband is a very distinct individual. His physical attributes, tumor size, location, grading, medical history, etc will all paint a unique portrait. His treatment should be tailored accordingly. I have heard of robotic surgery using the Davinci robot for BOT but it may not be appropriate for your husband, there are parameters for every surgery. There are basic ENT's and there are cancer ENT specialist. You can shop for one if and when surgery is needed. How was the treatment decision reached for your husband? Was a tumor Board involved? This cancer in many respects is incremental treatment. It may be the case that surgery in his case could be more destructive than chemo/Radiation. In response to your question about world class hospitals and small local hospitals my personal experience was to use a local hospital for generalized treatment and seek a specialized skill set for surgery.  I had great treatment at both facilities. It's good to ask questions here so you can arm yourself for questions for his doctor. You will be his best advocate in the long run. A healthy dose of questioning with an equal healthy dose of reasonableness is required. Sounds like he is in good hands with you. All the best. 

I know that every case is

I know that every case is different. The ENT who did my husband's biopsy sent the doctors who are doing the chemo and radiation into his hospital room that day and my husband felt confident with them and what they had to say. I guess there is no use second guessing at this point and it is his decision ultimately so, I have to find peace with it myself. I think if we pushed we could find someone who might operate but the quality of life without his tongue or a major part removed would probably be something he wouldn't agree to either. I was just curious because you always wonder if you are indeed doing the right thing. Thanks for your input!

MrsBD

Surgery vs None

Everone's case is unique and not all of us had surgery.  My cancer was located at the  BOT and hypopharnx. I asked one of the oncologists why they didn't recommend surgery for me. He said it would have been extremely disfiguring and the team believed radiation and chemo ( Erbitux ) would cure me. It has been ten months and there is no evidence of cancer. My treatment was done at a smaller area hospital and they seemed to be on top of the latest information. If you aren't satisfied with the answers you've been given, definitely get a second opinion. 

wmc

Surgery vs No surgery.....Not always a choice

It is not always a choice we or the doctors get to make. The reason I say this is mine was larynx at the supraglottic and I have bad lungs, [Stage three emphtsema]. With the 3cc x 2.5cc tumor now restricting my left vocal coard they did not have many choices. The anesthesiologist would not touch me nor would my surgen, as they felt they could not keep me alive doing the surgery. The radioligest said my lungs were to bad to do radiation with my breathing problems. The two options I was given were not really what I wanted to hear. #1 was nothing and maybe chemo, [it was never mentioned] so just wait and see how long I had. #2 was to have a tracheostomy and breath through my neck the rest of my life. They will seperate my trach from my esophagus so all my air goes in my neck and anything that goes in my mouth will only go to my stomach, and my nose will an ornament. I took option #2. to live.

I have know many with BOT cancer and it is very different depending where it is. If it crosses over to both sides it has to be traeted much different. If it is large I have known some where over 80% of the toung had to be removed and rebuilt. Learning to speak again is very hard but many have done it. I think they have a better chance with talking without surgery. Getting a second opion would have been good to have even having to wait six weeks. Now the treatment has started you need to trust your doctors as they have a plan just for your husband and no one else. All the doctors prescribe the treatment for only that patient, as there is so many variables as age, overall health, where it is and how agressive it is. I am by no means a doctor but I hope this will help some.

Bill

NJMOM

MrsBD said:

Surgery vs None

Everone's case is unique and not all of us had surgery.  My cancer was located at the  BOT and hypopharnx. I asked one of the oncologists why they didn't recommend surgery for me. He said it would have been extremely disfiguring and the team believed radiation and chemo ( Erbitux ) would cure me. It has been ten months and there is no evidence of cancer. My treatment was done at a smaller area hospital and they seemed to be on top of the latest information. If you aren't satisfied with the answers you've been given, definitely get a second opinion. 

MrsBD

That's basically what my husband has going on kind of what they've told us as well.  Yet I have read other stories where they do surgery. I wouldn't want this whole experience to be any more horrific than it already is so if they think this is the best way to attack this beast then so be it. He's already said they get one shot at him and if there is no success after this, he's done. I would hate to see him go through all of this without a cure being at the end of it but it's not in our hands is it? Thanks for sharing!

 

NJMOM

wmc said:

Surgery vs No surgery.....Not always a choice

It is not always a choice we or the doctors get to make. The reason I say this is mine was larynx at the supraglottic and I have bad lungs, [Stage three emphtsema]. With the 3cc x 2.5cc tumor now restricting my left vocal coard they did not have many choices. The anesthesiologist would not touch me nor would my surgen, as they felt they could not keep me alive doing the surgery. The radioligest said my lungs were to bad to do radiation with my breathing problems. The two options I was given were not really what I wanted to hear. #1 was nothing and maybe chemo, [it was never mentioned] so just wait and see how long I had. #2 was to have a tracheostomy and breath through my neck the rest of my life. They will seperate my trach from my esophagus so all my air goes in my neck and anything that goes in my mouth will only go to my stomach, and my nose will an ornament. I took option #2. to live.

I have know many with BOT cancer and it is very different depending where it is. If it crosses over to both sides it has to be traeted much different. If it is large I have known some where over 80% of the toung had to be removed and rebuilt. Learning to speak again is very hard but many have done it. I think they have a better chance with talking without surgery. Getting a second opion would have been good to have even having to wait six weeks. Now the treatment has started you need to trust your doctors as they have a plan just for your husband and no one else. All the doctors prescribe the treatment for only that patient, as there is so many variables as age, overall health, where it is and how agressive it is. I am by no means a doctor but I hope this will help some.

Bill

Thanks Bill

It is what it is at this point. He feels confident with the doctors have suggested so I guess I have to let go and let God. All of your posts in spite of what you've been through are positive and packed with information and encouragement, I really admire your strength and wish I had a little bit of it. Thanks!

phrannie51

NJMOM said:

Thanks Bill

It is what it is at this point. He feels confident with the doctors have suggested so I guess I have to let go and let God. All of your posts in spite of what you've been through are positive and packed with information and encouragement, I really admire your strength and wish I had a little bit of it. Thanks!

You DO have the strength NJ...

You're still in the "trying to find firm ground" phase of all this.  Peddling air doesn't offer much of a feeling of strength, but ya gotta peddle to get your feet on the ground....and that takes strength.  You're also a great advocate...which is an imperitive side-kick for anyone going through this. 

I believe in asking....ask the Dr. Why he chose no surgery, I'm sure he has an answer.....some of these guys just aren't talkers, it seems (to my chagrin)...and I didn't start out as an asker....but became one.   I never had surgery because of the placement of the tumor....I had concurrent chemo and rads....and then another 9 weeks of chemo after the rads were done....3 years out of treatment on August 28th. 

If you're anything like me, all the reading on the internet is not to my benefit.  100 things positive I read, don't seem to be able to counteract the one negative thing.....that negative thing sticks in my brain with super glue....I hate that I do this.

p

NJMOM

phrannie51 said:

You DO have the strength NJ...

You're still in the "trying to find firm ground" phase of all this.  Peddling air doesn't offer much of a feeling of strength, but ya gotta peddle to get your feet on the ground....and that takes strength.  You're also a great advocate...which is an imperitive side-kick for anyone going through this. 

I believe in asking....ask the Dr. Why he chose no surgery, I'm sure he has an answer.....some of these guys just aren't talkers, it seems (to my chagrin)...and I didn't start out as an asker....but became one.   I never had surgery because of the placement of the tumor....I had concurrent chemo and rads....and then another 9 weeks of chemo after the rads were done....3 years out of treatment on August 28th. 

If you're anything like me, all the reading on the internet is not to my benefit.  100 things positive I read, don't seem to be able to counteract the one negative thing.....that negative thing sticks in my brain with super glue....I hate that I do this.

p

Thanks Phrannie

I appreciate the vote of confidence. I did ask briefly the day of the biopsy about surgery and was told by the ENT that eating, swallowing, etc , normal life so to speak would be none existent. They said there was a tiny cyst on the outside of the base of the tongue but that was just the tip of the iceberg. His tumor is pretty deep into the actual tongue supposedly and because of the location not able to be operated on. I, too, have read lots of people's stories on here and am horrified by some of the stories, and will not share those with him because he doesn't need that right now. I try and pass on all the useful information that all of you have learned the hard way but he's such a hard head that I think some of what I say goes in one ear and right out the other. I try and impress upon him that we're not dealing with a common cold and your body is under attack from all ends...try what others have had success with. Give yourself some slack for this period in your life..take a pill if they tell you it will help you feel better and give yourself some time. Try to understand you are not the same person you were before cancer entered the picture and you may never be...but you know men do not make the best patients to begin with. Your positive outlook and posts always make me smile so keep 'em coming!!

bebo12249

NJMOM said:

Thanks Phrannie

I appreciate the vote of confidence. I did ask briefly the day of the biopsy about surgery and was told by the ENT that eating, swallowing, etc , normal life so to speak would be none existent. They said there was a tiny cyst on the outside of the base of the tongue but that was just the tip of the iceberg. His tumor is pretty deep into the actual tongue supposedly and because of the location not able to be operated on. I, too, have read lots of people's stories on here and am horrified by some of the stories, and will not share those with him because he doesn't need that right now. I try and pass on all the useful information that all of you have learned the hard way but he's such a hard head that I think some of what I say goes in one ear and right out the other. I try and impress upon him that we're not dealing with a common cold and your body is under attack from all ends...try what others have had success with. Give yourself some slack for this period in your life..take a pill if they tell you it will help you feel better and give yourself some time. Try to understand you are not the same person you were before cancer entered the picture and you may never be...but you know men do not make the best patients to begin with. Your positive outlook and posts always make me smile so keep 'em coming!!

I've just had surgery and

I've just had surgery and have chemo/rad to start soon. I was told that if the tumor (tonsil in my case) can be removed with clear margins then surgery (with chemo/rad to follow) is an option. The other option is chemo/rad alone. But if the surgeon thinks he/she cannot get clear margins, then surgery is essentially a waste as they will have to do the same chemo/rad as if the surgery attempt never happened. Of course as I have had surgery, my surgeon recommended surgery, but my Rad onc recommend against surgery (wanted chemo/rad only) and my medical (chemo) onc recommended surgery but only given that I had an outstanding surgeon with much experience in H&N CA. Your case must have had characteristics that didn't support surgery as an option. Even the docs disagree in some cases.

Kiev1996

NJMOM said:

Thanks Phrannie

I appreciate the vote of confidence. I did ask briefly the day of the biopsy about surgery and was told by the ENT that eating, swallowing, etc , normal life so to speak would be none existent. They said there was a tiny cyst on the outside of the base of the tongue but that was just the tip of the iceberg. His tumor is pretty deep into the actual tongue supposedly and because of the location not able to be operated on. I, too, have read lots of people's stories on here and am horrified by some of the stories, and will not share those with him because he doesn't need that right now. I try and pass on all the useful information that all of you have learned the hard way but he's such a hard head that I think some of what I say goes in one ear and right out the other. I try and impress upon him that we're not dealing with a common cold and your body is under attack from all ends...try what others have had success with. Give yourself some slack for this period in your life..take a pill if they tell you it will help you feel better and give yourself some time. Try to understand you are not the same person you were before cancer entered the picture and you may never be...but you know men do not make the best patients to begin with. Your positive outlook and posts always make me smile so keep 'em coming!!

Hi. If you are in NJ, then i

Hi. If you are in NJ, then i can recommend  two ENT docs in NY : dr Eric Genden and dr Mark Urken. Both do wonders and operate on things where noone else does. Wait time for Dr Urken was about 4 weeks last time.

CivilMatt

surgery?

NJMOM,

First off, is that dog all right?   He looks just like I did after I had tongue surgery.

For me, the treatment was surgery radiation, and Erbitux.  Even after I decided to have the surgery my ENT prefaced the surgery with he would try to get it all but until he looked at it he would not know.  Long story short, it all worked out fine.

Chances are your husband treatment plan is first rate and he will do just great.  Many of us had similar treatment plans with similar results and many of us were given choices we had to make.  With surgery being optional, I don’t see it as being a life or death decision or they wouldn’t make the offer.

I stayed local and had one opinion from a series of doctors.

Also, I could not wait to have the surgery and cut that crap out of me.

Good luck,

Matt

NJMOM

CivilMatt said:

surgery?

NJMOM,

First off, is that dog all right?   He looks just like I did after I had tongue surgery.

For me, the treatment was surgery radiation, and Erbitux.  Even after I decided to have the surgery my ENT prefaced the surgery with he would try to get it all but until he looked at it he would not know.  Long story short, it all worked out fine.

Chances are your husband treatment plan is first rate and he will do just great.  Many of us had similar treatment plans with similar results and many of us were given choices we had to make.  With surgery being optional, I don’t see it as being a life or death decision or they wouldn’t make the offer.

I stayed local and had one opinion from a series of doctors.

Also, I could not wait to have the surgery and cut that crap out of me.

Good luck,

Matt

Thought the picture was appropriate

Thought the picture might be indicative of what many of you have felt like during and after treatment! Again, I say I guess if you ask enough people eventually you can find someone who will say what you want to hear. Since today was 21 out of 35 treatments and he only has one more double day session of chemo in another 2 weeks, we're going with the proposed plan and hope for the best. I'm guessing what they saw on the MRI, etc was enough for them to rule out surgery. I really was just curious at to why some were candidates and others were not.u

NJMOM

Kiev1996 said:

Hi. If you are in NJ, then i

Hi. If you are in NJ, then i can recommend  two ENT docs in NY : dr Eric Genden and dr Mark Urken. Both do wonders and operate on things where noone else does. Wait time for Dr Urken was about 4 weeks last time.

Actually called Dr. Urken and

Actually called Dr. Urken and as I said my husband was anxious to get treatment started ASAP and wasn't willing to wait to be seen because he was convinced that his plan of treatment was standard for this type of cancer so why wait. From the day of his diagnosis 7/2/2015 till the time we started treatment 7/14/2015, we spent every day meeting with one doctor or another or had all the pet scans, cat scans etc, making of the mask, done so he could start ASAP. I think he was still a little impatient waiting those 12 days but I think when they said stage 4 we were both caught off guard that it was that advanced. I have heard good things about Dr. Urken and others say he's a little too eager to cut sometimes so I guess it all depends on who you ask.

debbiejeanne

CivilMatt said:

surgery?

NJMOM,

First off, is that dog all right?   He looks just like I did after I had tongue surgery.

For me, the treatment was surgery radiation, and Erbitux.  Even after I decided to have the surgery my ENT prefaced the surgery with he would try to get it all but until he looked at it he would not know.  Long story short, it all worked out fine.

Chances are your husband treatment plan is first rate and he will do just great.  Many of us had similar treatment plans with similar results and many of us were given choices we had to make.  With surgery being optional, I don’t see it as being a life or death decision or they wouldn’t make the offer.

I stayed local and had one opinion from a series of doctors.

Also, I could not wait to have the surgery and cut that crap out of me.

Good luck,

Matt

matt, you are so funny.  i

matt, you are so funny.  i laughed so hard at your comment that i choked.  i absolutely love the laughter you bring to us in this family.  we can all use that, even on a good day!

love and hugs,

deb

littlemisskitty

Different people, different recommendations

We are very careful people and did lots of second and third opinions. My mom has oral cancer that spread to her lymph nodes. Different situation mostly but with the oral cancer, since it was in te upper jaw and could be successfully removed with margins and would leave her the opposite side of the upper jaw and allow her to still eat on that side, they decided operating was the best option. When it spread to her lymph nodes, they of course operated to remove what they could but no margins could really be created due to the location and has to go through radiation and chemo. Every case is different. I know at one hospital, they said radiate and chemo before surgery, the other said after. Dana Farber in Boston said to remove more the second surgery she had but Yale where she went said the min alloted of margins was fine. One year later and her mouth is still clear according to Pet scans and biospys. Doctors tend to tailor the treatment plans according to the location and size of the tumor as well as quality of life for the patient. I know with my mom's case with her already having surgery and her upper jaw removed on the opposite side than the cancer spread, they took into consideration her ability to eat and her quality of life given certain side effects. In the end, we can only find the best doctor where they seem to care and are seeing your exact case and situation and trust them. I'm sure this doctor knows what he's doing in your husband's case and it sounds like his reasons were strong. I would trust that he knows what he's doing as long as you personally feel comfortable with him. Second opinions don't hurt though. 

 

For the record, there is a difference between a second opinion and asking someone to do the plan. When we were deciding on my mom's treatment plan, we were honest with the doctors and let them know they were a second opinion. They had us bring over all the work that the other hospital had done and sat down with us and said how they would handle it. Some doctors reviewed the other hospital's recomendations and some we were told specially didn't so they could make their own judgement call and we could compare. None refused to work with us (granted we didn't do Sloan Kettle but instead went through Yale and St. Francis which in CT is part of their affliates) and most were helpful. We weren't asking them to operate though so the situation might have been different. 

 

We did look into cyberknife and proton. She was not eligable since we had started the process with Yale already. I don't think hospitals like to pick up in the middle of treatment plans. 

NJMOM

littlemisskitty said:

Different people, different recommendations

We are very careful people and did lots of second and third opinions. My mom has oral cancer that spread to her lymph nodes. Different situation mostly but with the oral cancer, since it was in te upper jaw and could be successfully removed with margins and would leave her the opposite side of the upper jaw and allow her to still eat on that side, they decided operating was the best option. When it spread to her lymph nodes, they of course operated to remove what they could but no margins could really be created due to the location and has to go through radiation and chemo. Every case is different. I know at one hospital, they said radiate and chemo before surgery, the other said after. Dana Farber in Boston said to remove more the second surgery she had but Yale where she went said the min alloted of margins was fine. One year later and her mouth is still clear according to Pet scans and biospys. Doctors tend to tailor the treatment plans according to the location and size of the tumor as well as quality of life for the patient. I know with my mom's case with her already having surgery and her upper jaw removed on the opposite side than the cancer spread, they took into consideration her ability to eat and her quality of life given certain side effects. In the end, we can only find the best doctor where they seem to care and are seeing your exact case and situation and trust them. I'm sure this doctor knows what he's doing in your husband's case and it sounds like his reasons were strong. I would trust that he knows what he's doing as long as you personally feel comfortable with him. Second opinions don't hurt though. 

 

For the record, there is a difference between a second opinion and asking someone to do the plan. When we were deciding on my mom's treatment plan, we were honest with the doctors and let them know they were a second opinion. They had us bring over all the work that the other hospital had done and sat down with us and said how they would handle it. Some doctors reviewed the other hospital's recomendations and some we were told specially didn't so they could make their own judgement call and we could compare. None refused to work with us (granted we didn't do Sloan Kettle but instead went through Yale and St. Francis which in CT is part of their affliates) and most were helpful. We weren't asking them to operate though so the situation might have been different. 

 

We did look into cyberknife and proton. She was not eligable since we had started the process with Yale already. I don't think hospitals like to pick up in the middle of treatment plans. 

When I spoke with a

When I spoke with a representative at Sloan Kettering and edplained that my husband had the diagnosis and all the necessary pet scans, MRI's etc. and was due to start treatmemt within days of my call to SK, she said they had a waiting period and there was no way they could see us before he started treatment. She said they wouldn't even consider looking at him once he started treatment elsewhere. I had heard such wonderful things about SK and really wanted him to be seen what I considered the cancer pros but I guess it's all water under the bridge. IF and I'm not even allowing myself to think it but IF this round of treatment is not successful I think I'm going to insist he let them check him out.

Kapital

Surgery

Hi NJMOM. My husband was treated for stage IV tonsil SCC T1N2b hpv16+ with 33 days of IMRT radiation and 3 rounds of chemo - carboplatin. Surgery was never recommended as an option. Each person is unique in the location and extent of their cancer. We put our faith in the experts and decided that they had the training and knowledge base to know what the best route to follow was. We live in a large city and used a large health care facility.  My husband has done well, so far, no recurrence. I'm grateful that he didn't have to go through the additional discomfort of surgery. Radiation and chemo is not easy either, but so far so good.