On the journey......

PipLily

Hello......I’m back after a time, and just wanted to check in- thinking my husband will need everyone’s wisdom in the weeks to come. Things are progressing forward now. My husband had his TORS surgery 3-12. They were able to find the primary BOT. Small tumor...1.5 cm. He had bilateral neck dissection- both sides done because PET showed small uptake on right neck area. In all-  2 positive nodes on the left, none on right. Clean surgical margins, but unfortunately, one node showed microscopic Extranodal extension. Darn!! Because of that- Medical Oncology is saying chemo required. Radiation will consist of 6 weeks to left side only...thankful for that!! Our dilemma is that our surgeon, who is, I would say forward thinking in terms of current treatment trends, research studies, etc, does not feel that my husband requires chemo....Medical oncology is adamantly saying yes because of the ENE. We’ve been given the general number of 5% that chemo adds to odds of cure, etc. We are absolutely torn between what to do. Wondering if any of of you were recommended to have chemo but held off??? I’m so disappointed that we’re in this position of needing to decide. We know that the chemo potentiates the radiation, so both short term and long term effects could be worse. So while we want a cure, quality of the life lived is a concern, as I’m sure all of you know, more than us at this point!!! But definitely afraid of recurrence also. Any thoughts or words of wisdom welcomed! Mask fitting and planning session is Monday, then rads to start probably week after, so we need to decide. Thanks ahead of time!!! Appreciate you all!

MarineE5

PipLily,

I am sorry that you and your husband have been thrown a curve after already starting on your journey. Both of you will look at what is in front of you and decide what is best. I had Base of Tongue cancer in 2004, surgery to remove the tumor, Radical Neck Disection on the right side. Going into this I was warned that the Surgery could result in me having a Feeding Tube for the rest of my life and problems talking. I had been given a choice of Radiation and Chemo with no surgery, but I wanted the Tumor out of me. 

I told the Surgeon to hit me with the kitchen sink if needed since I only wanted to do this once. After Surgery with the Radiation Oncologist consulting with the Surgeon they decided that I only needed Radiation for 6 weeks. I had anticipated both Radiation and Chemo, but was told they thought it best to hold the Chemo for a backup plan. So far it has worked out for me. The Radiation can be harsh and you can read the Super Thread that is on the 1 st page here of H & N for tips during treatments. 

The Radiation does have side effects and not all of them pertain to all of us. I have severe dry mouth since I had the IMRT type of Radiation on both sides of my neck. I do not leave the house without a bottle of water. I have ringing in my ears and some other issues. All in all, I manage to continue to do things I did before cancer. I do not have a Feeding Tube, but have to be careful of what I eat as I have choked several times. My speech is pretty good as I did have a portion of my tongue removed but my wife and others state my voice sounds the same, I do stumble over words at times.  

One person years ago stated that when we go thru treatments, some people run thru them, others walk and others crawl, the important part is to get to the finish line. Recovery is measured in weeks, not days so we have to be patient on that. Again, each of us handles recovery different than the next person. 

Since 2004, improvements have been made in the way treatments are managed, newer machines, etc. Others will be along as we have a lot of knowlegeable people here. 

My Best to Both of You and Everyone Here

wbcgaruss

Here is Some Input-Hope it Helps

I’m with MarineE5 on the part where you want to do this once and be sure the cancer is gone. The question is how do you do it in each case because the patient and the circumstances are different.

Since you are really troubled by this decision and you want to get it right is there other hospitals or cancer doctors in your area to get a second opinion? In my first cancer of the throat, I was confident in My ENT and when he found the cancer I got a cat scan, a pet scan, etc. and he referred my case to chemo and rad doctors which after meeting them and going over my case I was very confident in them. Of course, being a new cancer patient what do we really have expertise at? Really none of it we have to evaluate our caregivers by listening and using our common sense and gut feelings. Nowadays we can do research online about providers and treatments. It can get overwhelming fast. The standard treatment has been 35 radiation treatments with chemo beginning middle and at the end but I am sure it can be different for each case. That is what I had the standard treatment and I was clear for 5 years and then got a cancerous spot on my tongue. I thought I was in the clear after 5 years but you never know I have found out. Then about a year later I got a sore neck on the left side again and hoping it was radiation leftover waited till my next ENT appointment. Well ENT did not see anything he was really alarmed about but had me get a Cat scan anyway. Well, I had cancer again in one Lymph node and after a PET scan, it showed it was not encapsulated and growing into other tissue. Anyway, to shorten this up I was operated on at a more major teaching hospital because of my situation and afterward, they recommended follow up radiation and I also saw the chemo doc but due to the after effect of my previous chemo (neuropathy, some tinnitus) he did not want to give me chemo because of more damage. So I got the follow-up rads only 30 treatments and they were very careful with the rad plan because of my previous rads. I think they would have given me chemo were it not for my previous chemo and the after-effects. MarineE5 said they held back chemo in his case for a backup and it has worked out for him, that is great. So maybe in your case that is workable also. You have decisions to make for sure. Maybe even seeing your family doc would help I'm sure they have seen many cancer cases. One more opinion.

Are they recommending a feeding tube? If so I would say get it before you start as if you need it later you will be feeling bad and I think any throat swelling may make it more difficult but not sure about that. Don’t tough it out get the feeding tube ahead (My Opinion Only) and during treatment take plenty of meds if you need them and Stay Ahead of any nausea or pain you may encounter. If the rads affect your taste and saliva like most of us you will have a period with no taste and saliva may be very thick. Keep it cleared out and use the salt and water and baking soda mixture to rinse a lot.

Rinse your mouth every 4 to 6 hours, or more often as needed. Use one of the rinses listed below:

• One quart (4 cups) of water mixed with 1 teaspoon of salt and 1 teaspoon of baking soda.

Above all check out the Superthread at the top of the head and neck page before you get started as it is loaded with information you will probably find helpful. Prepare well.

 

Looking back I am satisfied with all my treatments and I believe all the doctors and nurses and aids did everything they could to eradicate my cancer and beat me up with the treatments as little as possible.

I would say get a second opinion. Use your gut feeling. If it doesn’t seem right ask questions and don’t proceed till you feel comfortable. Sorry this is so long but hope it helps and everything works out-Take Care-God Bless

HobbsDoggy

One Or Both?

My treatment was over 9 years ago so what happened then may no longer apply.  Also, I am no doctor and have zero medical training so my views are just my own experience no more than that.  I was told that the addition of chemo made the radiation more effective and it was my choice.  The oncologist happened to be an acquittance of mine who I really respected.  He said that chemo would add to after effects in making recovery generally longer and could reduce quality of life, but that was unknown and likely about a 10% impact.  It all depended on how aggressive I wanted to be to get rid of the cancer.  My general health was good and I wanted the cancer gone.  He made no promises.  I was also lucky in that I was able to get a consolation with a renowned specialist quite by accident who said the goal is to cure you so do what it takes.  The treatment was rough and for a few weeks after treatment I thought I was going to never get taste back, would have a feeding tube forever, would be just miserable, etc.  Slowly things got better and I was able to work again and enjoy life again.  There are still effects and life is not perfect and there is still fear, but the journey was worth the result.  Support groups really helped as did a counselor at the cancer treatment center.  Should you do what I did and add chemo, I cannot say that is for sure you can only weigh what the doctors tell you, ask others and make your best decision, it will be the right one.  

PipLily

MarineE5 said:

PipLily,

I am sorry that you and your husband have been thrown a curve after already starting on your journey. Both of you will look at what is in front of you and decide what is best. I had Base of Tongue cancer in 2004, surgery to remove the tumor, Radical Neck Disection on the right side. Going into this I was warned that the Surgery could result in me having a Feeding Tube for the rest of my life and problems talking. I had been given a choice of Radiation and Chemo with no surgery, but I wanted the Tumor out of me. 

I told the Surgeon to hit me with the kitchen sink if needed since I only wanted to do this once. After Surgery with the Radiation Oncologist consulting with the Surgeon they decided that I only needed Radiation for 6 weeks. I had anticipated both Radiation and Chemo, but was told they thought it best to hold the Chemo for a backup plan. So far it has worked out for me. The Radiation can be harsh and you can read the Super Thread that is on the 1 st page here of H & N for tips during treatments. 

The Radiation does have side effects and not all of them pertain to all of us. I have severe dry mouth since I had the IMRT type of Radiation on both sides of my neck. I do not leave the house without a bottle of water. I have ringing in my ears and some other issues. All in all, I manage to continue to do things I did before cancer. I do not have a Feeding Tube, but have to be careful of what I eat as I have choked several times. My speech is pretty good as I did have a portion of my tongue removed but my wife and others state my voice sounds the same, I do stumble over words at times.  

One person years ago stated that when we go thru treatments, some people run thru them, others walk and others crawl, the important part is to get to the finish line. Recovery is measured in weeks, not days so we have to be patient on that. Again, each of us handles recovery different than the next person. 

Since 2004, improvements have been made in the way treatments are managed, newer machines, etc. Others will be along as we have a lot of knowlegeable people here. 

My Best to Both of You and Everyone Here

Thank you!

So appreciate all your thoughts, MarineE5! And just so encouraging for someone new to all this to hear stories from those who have made it through to the other side of this! My husband hasn’t yet wanted to sign up on this site, so I just get the information for him, and I will be sure to share your great outcome with him! I’m happy for you! And grateful for your thoughts:)

PipLily

wbcgaruss said:

Here is Some Input-Hope it Helps

I’m with MarineE5 on the part where you want to do this once and be sure the cancer is gone. The question is how do you do it in each case because the patient and the circumstances are different.

Since you are really troubled by this decision and you want to get it right is there other hospitals or cancer doctors in your area to get a second opinion? In my first cancer of the throat, I was confident in My ENT and when he found the cancer I got a cat scan, a pet scan, etc. and he referred my case to chemo and rad doctors which after meeting them and going over my case I was very confident in them. Of course, being a new cancer patient what do we really have expertise at? Really none of it we have to evaluate our caregivers by listening and using our common sense and gut feelings. Nowadays we can do research online about providers and treatments. It can get overwhelming fast. The standard treatment has been 35 radiation treatments with chemo beginning middle and at the end but I am sure it can be different for each case. That is what I had the standard treatment and I was clear for 5 years and then got a cancerous spot on my tongue. I thought I was in the clear after 5 years but you never know I have found out. Then about a year later I got a sore neck on the left side again and hoping it was radiation leftover waited till my next ENT appointment. Well ENT did not see anything he was really alarmed about but had me get a Cat scan anyway. Well, I had cancer again in one Lymph node and after a PET scan, it showed it was not encapsulated and growing into other tissue. Anyway, to shorten this up I was operated on at a more major teaching hospital because of my situation and afterward, they recommended follow up radiation and I also saw the chemo doc but due to the after effect of my previous chemo (neuropathy, some tinnitus) he did not want to give me chemo because of more damage. So I got the follow-up rads only 30 treatments and they were very careful with the rad plan because of my previous rads. I think they would have given me chemo were it not for my previous chemo and the after-effects. MarineE5 said they held back chemo in his case for a backup and it has worked out for him, that is great. So maybe in your case that is workable also. You have decisions to make for sure. Maybe even seeing your family doc would help I'm sure they have seen many cancer cases. One more opinion.

Are they recommending a feeding tube? If so I would say get it before you start as if you need it later you will be feeling bad and I think any throat swelling may make it more difficult but not sure about that. Don’t tough it out get the feeding tube ahead (My Opinion Only) and during treatment take plenty of meds if you need them and Stay Ahead of any nausea or pain you may encounter. If the rads affect your taste and saliva like most of us you will have a period with no taste and saliva may be very thick. Keep it cleared out and use the salt and water and baking soda mixture to rinse a lot.

Rinse your mouth every 4 to 6 hours, or more often as needed. Use one of the rinses listed below:

• One quart (4 cups) of water mixed with 1 teaspoon of salt and 1 teaspoon of baking soda.

Above all check out the Superthread at the top of the head and neck page before you get started as it is loaded with information you will probably find helpful. Prepare well.

 

Looking back I am satisfied with all my treatments and I believe all the doctors and nurses and aids did everything they could to eradicate my cancer and beat me up with the treatments as little as possible.

I would say get a second opinion. Use your gut feeling. If it doesn’t seem right ask questions and don’t proceed till you feel comfortable. Sorry this is so long but hope it helps and everything works out-Take Care-God Bless

Thank you!

Thank you, wbcgaruss, for such a thorough response!! We have a tentative second opinion set up, but I also don’t want to delay treatment, and things just seem chaotic doing anything right now with Covid issues, so I guess I’ll figure that out early this week. I got on the superthread, and just made a list of things to get this week, so thanks for reminding me that thread was available. 

Our treatmeant center and Speech Pathologist recommend NO tube so as to not lose swallow muscle and function....unless absolutely necessary.  So just praying that my husband is able to muster strength to forge ahead with swallowing when it becomes intense. He is a pretty big, solid guy, so there’s a bit of leeway as he sees it:;

I am sorry you went through this three times....I’m sure that was so difficult both mentally and physically. Your courage, and that of everyone here, really helps those of us new to this unwanted fight we’re in. Thank you!

Elizabeth

PipLily

HobbsDoggy said:

One Or Both?

My treatment was over 9 years ago so what happened then may no longer apply.  Also, I am no doctor and have zero medical training so my views are just my own experience no more than that.  I was told that the addition of chemo made the radiation more effective and it was my choice.  The oncologist happened to be an acquittance of mine who I really respected.  He said that chemo would add to after effects in making recovery generally longer and could reduce quality of life, but that was unknown and likely about a 10% impact.  It all depended on how aggressive I wanted to be to get rid of the cancer.  My general health was good and I wanted the cancer gone.  He made no promises.  I was also lucky in that I was able to get a consolation with a renowned specialist quite by accident who said the goal is to cure you so do what it takes.  The treatment was rough and for a few weeks after treatment I thought I was going to never get taste back, would have a feeding tube forever, would be just miserable, etc.  Slowly things got better and I was able to work again and enjoy life again.  There are still effects and life is not perfect and there is still fear, but the journey was worth the result.  Support groups really helped as did a counselor at the cancer treatment center.  Should you do what I did and add chemo, I cannot say that is for sure you can only weigh what the doctors tell you, ask others and make your best decision, it will be the right one.  

The right decision....

I agree with you.......my husband and I were talking yesterday, and we both agreed that whichever way he/ we decide, it WILL be the right one. We will have made the decision with the best information we had. And we’ll never be able to think, “we’ll, what if we had........” , because either way could have repercussions. So once we decide, we’re goi to try not to second guess. Thank you so much for responding, because it helps to hear perspectives from others who have walked through this. Congratulations on 9 years....that’s wonderful!

Elizabeth

Logan51

Elizabeth

Not much I can add to what's been said, other than to be wary of the amount of Rads applied to the base of throat. I was NPC "unknown Primary," even after 2 surgical biopsies, and got blasted in 20 places/session with concurrent Cisplatin & FU-5. Life was good for a number of years, and still worked as an Inspector. The first problem was neck spasms, which a combination of meds has helped with. The biggest impact is due to the 68Gys of Rads applied to the base of my throat, resulting in my becoming feeding tube dependent. The aspiration started almost 9 years, post-tx, cause by growth of scar tissue around esophagus aperture. Lord knows if, or when, scar tissue growth will impact my breathing, and it all is a result of the Rads applied to the bottom of throat. Looking back, I sure do wish I had gone to the U of Iowa for a 2nd opinion, as they are highly rated. But, being 11 years out and C-free, I reckon I shouldn't complain. Getting rid of the C is priority #1. 

PipLily

Logan51 said:

Elizabeth

Not much I can add to what's been said, other than to be wary of the amount of Rads applied to the base of throat. I was NPC "unknown Primary," even after 2 surgical biopsies, and got blasted in 20 places/session with concurrent Cisplatin & FU-5. Life was good for a number of years, and still worked as an Inspector. The first problem was neck spasms, which a combination of meds has helped with. The biggest impact is due to the 68Gys of Rads applied to the base of my throat, resulting in my becoming feeding tube dependent. The aspiration started almost 9 years, post-tx, cause by growth of scar tissue around esophagus aperture. Lord knows if, or when, scar tissue growth will impact my breathing, and it all is a result of the Rads applied to the bottom of throat. Looking back, I sure do wish I had gone to the U of Iowa for a 2nd opinion, as they are highly rated. But, being 11 years out and C-free, I reckon I shouldn't complain. Getting rid of the C is priority #1. 

Doses....

Hi Dave....We met with the Rad Oncologist Monday, along with mask fitting. We really really liked her! She stressed how careful she is planning his treatment, taking great care to pinpoint treatment and avoid areas that aren’t required to be treated. She spent a considerable amount of time with us. The site of the tumor at BOT ( that was resected with TORS) will be 62 Gys, the 2 positive lymph node sites that were resected will get 60 Gys, and other areas to neck will have 54 Gys. Left side only. Not sure where that falls in the “range “ of things. 

 

PipLily

My husband decided

My husband has decided to receive the chemo therapy. He starts Radiation ( 6 weeks total) and chemo next week. We’ve stocked up on supplies, and ordered Skandishakes and Benecalorie supplements. The radiation department recommended to start with Aquaphor for his neck......I’ve read some like it and some don’t. So we got some, and just figure we can always switch if needed. Very scared to get going, but also anxious to start just to get things behind us. My husband is so wonderfully strong with a positive attitude!

HobbsDoggy

Attitude Will Help For Sure As Will Oncologist

Great news about the Oncologist.  Having an Oncologist that cares and takes her time and plans well is so important.  You are in good hands there.  It will make a world of difference.  Yep the chemo will add a bit of extra "fun" to the mix, but will help kick cancer's butt for sure.  Scared is a good way to be as if you were not you would not be a normal human.  As a friend of mine always says, the brest we will ever be is human.  We are all puling for you.  Keep us informred how its going.

PipLily

HobbsDoggy said:

Attitude Will Help For Sure As Will Oncologist

Great news about the Oncologist.  Having an Oncologist that cares and takes her time and plans well is so important.  You are in good hands there.  It will make a world of difference.  Yep the chemo will add a bit of extra "fun" to the mix, but will help kick cancer's butt for sure.  Scared is a good way to be as if you were not you would not be a normal human.  As a friend of mine always says, the brest we will ever be is human.  We are all puling for you.  Keep us informred how its going.

Thanks so much for the

Thanks so much for the encouragement!!

wbcgaruss

I am Glad

You have decided on a definite plan. That will relieve some stress. Now you can move ahead and focus on the treatment ahead-Take Care-God Bless

PipLily

wbcgaruss said:

I am Glad

You have decided on a definite plan. That will relieve some stress. Now you can move ahead and focus on the treatment ahead-Take Care-God Bless

Thanks wbcgaruss....

If it weren’t for Covid, I would feel very confident in our decision. As things are, I’m nervous about the benefit of chemo, versus the immunocompromised state my husband will be in, but he feels very happy with his decision, so I’m supporting him 100%, and we will just be OVERLY careful!!! You take care, and stay safe!!

motorcycleguy

PipLily said:

Thanks wbcgaruss....

If it weren’t for Covid, I would feel very confident in our decision. As things are, I’m nervous about the benefit of chemo, versus the immunocompromised state my husband will be in, but he feels very happy with his decision, so I’m supporting him 100%, and we will just be OVERLY careful!!! You take care, and stay safe!!

Pip,

I finished chemo 9 months ago, and as of my last blood test (a couple months ago), my red and white cells were still "not in the accepted range".

So, you're very wise to be concerned about his immunity. Hopefully, you can keep him isolated as much as possible, and Covid fades away SOON.

Please take care, and I wish you the best possible outcome!

mg

big G

motorcycleguy said:

Pip,

I finished chemo 9 months ago, and as of my last blood test (a couple months ago), my red and white cells were still "not in the accepted range".

So, you're very wise to be concerned about his immunity. Hopefully, you can keep him isolated as much as possible, and Covid fades away SOON.

Please take care, and I wish you the best possible outcome!

mg

Pip Lily

I also had the TORS for BOT with several nodes involved on the right side. I was told to be prepared for the chemo but after the path report I was informed of no extension so 6 weeks of IMRT. 54 gys to the right side then the last week in the 60's to the tumor site. Extension is automatic chemo most if not all the time.The Aquaphor you mentioned is great stuff if you don't mind it being a little greasy and messing up a few t-shirts but I'm convinced it kept my neck in good shape no redness or burns. wishing your husband a speedy recovery. Stay safe.

PipLily

motorcycleguy said:

Pip,

I finished chemo 9 months ago, and as of my last blood test (a couple months ago), my red and white cells were still "not in the accepted range".

So, you're very wise to be concerned about his immunity. Hopefully, you can keep him isolated as much as possible, and Covid fades away SOON.

Please take care, and I wish you the best possible outcome!

mg

Chemo question

Hi mg- I think we’re as equally nervous about the chemo as the radiation. What did you feel like after the infusions?? Sick or lots of nausea? Just wondering what to expect those few days after the infusion. He will be getting 2 infusions 21 days apart. Thank you!

PipLily

big G said:

Pip Lily

I also had the TORS for BOT with several nodes involved on the right side. I was told to be prepared for the chemo but after the path report I was informed of no extension so 6 weeks of IMRT. 54 gys to the right side then the last week in the 60's to the tumor site. Extension is automatic chemo most if not all the time.The Aquaphor you mentioned is great stuff if you don't mind it being a little greasy and messing up a few t-shirts but I'm convinced it kept my neck in good shape no redness or burns. wishing your husband a speedy recovery. Stay safe.

Hello big G!

Great to hear first hand about the Aquaphor. I was thinking of getting Aloe also, but maybe we’ll just stick with one thing unless it doesn’t work. 

Yes, I figured with the Extracapsular Extension that chemo was probably a done deal. I’ve been reading a lot of studies, though, that they may be rethinking the importance or significance of that with HPV POSITIVE patients. Our radiation oncologist says there will be an important study coming out most likely this summer, others later to follow, to see if there can be de-escalation either for chemo or radiation. Guess our diagnosis came too early to benefit from that possibly Glad for you that you were able to not have it!

motorcycleguy

PipLily said:

Chemo question

Hi mg- I think we’re as equally nervous about the chemo as the radiation. What did you feel like after the infusions?? Sick or lots of nausea? Just wondering what to expect those few days after the infusion. He will be getting 2 infusions 21 days apart. Thank you!

Pip

I thought radiation was easy, but chemo was more difficult. It can make you nauseous, and not want to eat. It saps your energy levels - so hopefully can take time off from work, if needed.

On a positive note, I lost blondish/brown hair - but it all came back, just much darker and curlier ...

I wish you and your husband the best possible outcome!!

mg

Pclark21st

PipLily said:

Hello big G!

Great to hear first hand about the Aquaphor. I was thinking of getting Aloe also, but maybe we’ll just stick with one thing unless it doesn’t work. 

Yes, I figured with the Extracapsular Extension that chemo was probably a done deal. I’ve been reading a lot of studies, though, that they may be rethinking the importance or significance of that with HPV POSITIVE patients. Our radiation oncologist says there will be an important study coming out most likely this summer, others later to follow, to see if there can be de-escalation either for chemo or radiation. Guess our diagnosis came too early to benefit from that possibly Glad for you that you were able to not have it!

You should definitely get the

You should definitely get the Aloe.  Aquafor first and main ingredient is petroleum.  Radiation doesnt mess around...you can get severe skin burns.  We actually used Aloe,  Calendula and also Coconut Oil...had only one tiny area that just turned red.  Our medical team was shocked and kept asking what we were using...and it's one natural thing you can do for your body among all the other toxins.

PipLily

motorcycleguy said:

Pip

I thought radiation was easy, but chemo was more difficult. It can make you nauseous, and not want to eat. It saps your energy levels - so hopefully can take time off from work, if needed.

On a positive note, I lost blondish/brown hair - but it all came back, just much darker and curlier ...

I wish you and your husband the best possible outcome!!

mg

Thank you!

And I have heard from many people abou the curly hair after chemo......he’s straight silver right now, so he would probably like a change!! He retired in December, 2 weeks before his diagnosis. So while that’s a complete bummer, the bright side is that he can just focus his total energy on getting better and moving on to the REAL retirement!!