Surgery, chemoradiation or Chemoradiation

MJG1

I would be interested to know how decisions were made regarding surgery then chemo/radiaion or the decision to try to avoid surgery with chemo/radiation.  My husband and I have been trying to decide what we think is in his best interests before we hear from the Drs.  They met today about him.  if he has surgery he faces, 4 lymph nodes being removed, right base of tongue removed and replaced with skin from his forearm, right tonsil removed, half of hyoid bone removed, and probable inability to lift his right arm above his head.  what does he gain?  The tumor will be out and chemo/radiation will not need to be as strong.  Possilility of saving a couple salavry glands.  His daignosis is P-16 Squamous cell carcinoma.  

Kari2007

Surgery not offered

My head and neck cancer surgeon told me surgery was not their first line of treatment for this type of cancer because they get such good results with only chemoradiation. He said surgery tends to come with more life limiting complications. I suppose it depends on how large the tumor is and where it's located, but it was never even suggested for me and I have P16 SCC. Not sure if that helps, but the protocol here in Seattle seems to shy away from surgery. 

Kari

MJG1

Kari2007 said:

Surgery not offered

My head and neck cancer surgeon told me surgery was not their first line of treatment for this type of cancer because they get such good results with only chemoradiation. He said surgery tends to come with more life limiting complications. I suppose it depends on how large the tumor is and where it's located, but it was never even suggested for me and I have P16 SCC. Not sure if that helps, but the protocol here in Seattle seems to shy away from surgery. 

Kari

Surgery not offered

Kari, 

Thanks for the response.  Initially the Surgeon was leaning one way then the other.  The team met today, but we have not heard any results from their discussions.  My husband is in SO much pain and we're concerned that if the tumor doesn't shrink enough he will be in a weakened state post chemo/radiation and then have to have surgery any way.  It is difficult to know what to do and what the best route is since we don't specialize in this!! Again, thank you for taking the time to share and best of wishes for continued healing and good health.

cardoza33

MJG1 said:

Surgery not offered

Kari, 

Thanks for the response.  Initially the Surgeon was leaning one way then the other.  The team met today, but we have not heard any results from their discussions.  My husband is in SO much pain and we're concerned that if the tumor doesn't shrink enough he will be in a weakened state post chemo/radiation and then have to have surgery any way.  It is difficult to know what to do and what the best route is since we don't specialize in this!! Again, thank you for taking the time to share and best of wishes for continued healing and good health.

Tough call

My wife and I spent alot of hours stressing over this decision.  The ENT surgeon suggested surgery, the Oncologist and Radiation suggested Chemo/rad.  I was stage 4 and had cancer in my nasal passage, several lymph nodes and my tongue.  I would have also had to have an extensive surgery.  I was particulary concerned by them cutting my tongue as I am a trial attorney and speak for a living.  What swayed my decision was when my doctor basically told me I could go ahead and have the surgery but I was infected enough I would still have 35 radiation and 3 chemos just like I would if I didn't have surgery. Why not try to get rid of all of it without surgery.  In the end even my ENT said it was not a bad idea to try to get it without surgery first.  I am now 6 months past treatment with 2 clean scans, so at this point I am happy with my decision.  Ultimately, you need to be content with your decision.  I can tell you in the many many hours of reading on this and other cancer websites, there are many success stories of both people who choose surgery and who don't.  You are doing the right thing and getting as much information you can in order to make the best decision you can.  Once you talk with your treatment team it will hopefully make the decision somewhat easier.

CivilMatt

what you going to do?

MJG1,

For me I wanted the cancer gone (don’t we all) so I opted for surgery first.  A chunk of my tongue and a jugular vein dissection and phase 1 was complete.

cardoza is very right, even with surgery they will probably recommend radiating the same locations to knock out any residual cancer cells.  Maybe, with a lower dose if you have surgery first.

You did mention a number of areas to treat and you want to make sure you go after it all this go around. 

Ask your team to be 100% honest and seek a 2^nd or 3^rd opinion if needed.  Chances are, like many of us, you’ll be weighing your options at home, just the two of you.  As if your head wasn’t spinning enough already.

Your team will not let you make a wrong choice and whatever options you choose a happy “new normal” is just a few months away.

Good luck,

Matt

RottiesMom

Surgery not offered

My Doctors said the protocol for my cancer was no surgery, 7 weeks radiation and 3 cycles of Chemo ( cisplatin ) 3 weeks apart. I have SSC Stage IVA T1N2bM0 tonsil cancer (tonsil is origination site, metastized to 2 lymph nodes)  for the same reason Kari said, they have excellent results with this type of treatment.  

Joanne

 

yensid683

Surgery - no

I was diagnosed in March of 2012 with stage IV-a, HPV 16 SCC, the primary tumor was 30 mm on the left base of my tongue and had involved the left cervical lymph nodes (60mm) and part of the left pharyngeal wall.  Surgery was not an option, as they noted so much would have to be removed to get clear margins that it would not be necessarily survivable long term.

My MO opted for induction chemo first, 3 rounds, each round to be 5 days as an in patient on continuous high dose chemo.  I only had one session due to issues with my kidneys but it substantially reduced the size of the lymph nodes, like to the point of being barely able to palpate them.

I then moved to concurrent chemo/radiation with a medication called Erbitux (Cetuximab) and it was very effective.

I did have surgery after treatment, a selective neck dissection to remove the lymph nodes in the left side of my neck and it is now 4 years later, no sign of recurrence, no real issues.  I can speak, swallow, eat just about anything (some items are a challenge) but all in all, I'm good.

each case is different, I'm not a physician and can't make recommendations on what you should do, but for me, HPV 16 positive SCC, this worked.

MJG1

yensid683 said:

Surgery - no

I was diagnosed in March of 2012 with stage IV-a, HPV 16 SCC, the primary tumor was 30 mm on the left base of my tongue and had involved the left cervical lymph nodes (60mm) and part of the left pharyngeal wall.  Surgery was not an option, as they noted so much would have to be removed to get clear margins that it would not be necessarily survivable long term.

My MO opted for induction chemo first, 3 rounds, each round to be 5 days as an in patient on continuous high dose chemo.  I only had one session due to issues with my kidneys but it substantially reduced the size of the lymph nodes, like to the point of being barely able to palpate them.

I then moved to concurrent chemo/radiation with a medication called Erbitux (Cetuximab) and it was very effective.

I did have surgery after treatment, a selective neck dissection to remove the lymph nodes in the left side of my neck and it is now 4 years later, no sign of recurrence, no real issues.  I can speak, swallow, eat just about anything (some items are a challenge) but all in all, I'm good.

each case is different, I'm not a physician and can't make recommendations on what you should do, but for me, HPV 16 positive SCC, this worked.

yensid683-Thank you

Yesterday we were given the plan.  Chemo and Radiation.  Initially the Chemo will be alternated with a different (test study) chemo which has been found to show great success in P16 patients.  My husband's treatment should it have been surgery would have been a BIG one too so I think the Drs. believe this is easier long term on him and with just as good a success rate.  We're counting on it!! Thank you for your thoughtful response.

MJG1

Hondo

do what we can do

 

Sometimes all we can do is what we and the doctors think best, from there I put it in Gods hand to do all the rest.

Tim

cardoza33

MJG1 said:

yensid683-Thank you

Yesterday we were given the plan.  Chemo and Radiation.  Initially the Chemo will be alternated with a different (test study) chemo which has been found to show great success in P16 patients.  My husband's treatment should it have been surgery would have been a BIG one too so I think the Drs. believe this is easier long term on him and with just as good a success rate.  We're counting on it!! Thank you for your thoughtful response.

MJG1

Always a relief once you know

Always a relief once you know the plan.  Now go tackle it and kick its butt!!!

MJG1

cardoza33 said:

Always a relief once you know

Always a relief once you know the plan.  Now go tackle it and kick its butt!!!

Yes absolutely

We're going to kick its butt!!

MJG1

Hondo said:

do what we can do

 

Sometimes all we can do is what we and the doctors think best, from there I put it in Gods hand to do all the rest.

Tim

God----Yes absolutely

I pray all the time.  Thanks for that reminder though.

wmc

Just my thoughts

I did not have [BOT] base of tongue. Mine was just above my vocal cords and I had bad lungs. I really never had a choice if I wanted to survive. I would not survive radiation or surgery. My choice was to remove my larynx and breath out my neck. Also, I had a neck dissection on both sides level 2-5 and took 86 glands.

The reason I am saying this is there is always a chance something like he can't raise his arm above his shoulder.  I do know many that did happen to. Maybe I just had a better surgeon, but I was cut from ear to ear, [I'll leave out what was next] and removed my larynx. I am numb on the left side from my ear to my chin. I take a muscle relaxer so I have the full rotation on my neck to drive. If I don't take them my neck is stiff and I have 75-80%, and I wanted 100%. I have no problem with either arm being raised. They have to tell you because they are cutting almost every muscle and nerve. As for the hyoid bone, that was removed with my larynx.  When they took my larynx the tumor was in there so they got everything and more. I never needed radiation or chemo. Those were first explained with the hope of saving my voice.

You asked what does he gain?  The best chance to beat it. This is a choice he will have to make, and get the doctors input. If you don't have surgery and the tumor doesn't shrink completely, and then you have to have surgery they now have to cut through radiated tissue which is much worse than tissue that was never radiated. It also heals slower and can also have side effects.  I was told they got all of the cancer, and they even biopsied the lymph glands when I was still in surgery. I could have radiation if I wanted, but my Head doctor was not recommending it, the radiologist wanted it but he was overruled by all the others on the team.

Whatever choice he makes, don't ever go back and second guess it. He will make the choice that is right for him.

Prayers help too.  I know because I'm still alive and only 5 thought I would be.

Bill

bebo12249

I had SSC of the tonsil with

I had SSC of the tonsil with two positive lymp nodes. My surgeon rec surgery followed by rads/chemo and my my radiation onc rec rads and chemo only but said according to the current guidelines, either approach is recommended. I elected to have surgery first (got clean margines). As it turned out, my kidneys did respond well to Cisplatin so I had to receive a reduced dose. I'm glad I had the surgery first since I couldn't take the recommended dose to chemo.

MJG1

wmc said:

Just my thoughts

I did not have [BOT] base of tongue. Mine was just above my vocal cords and I had bad lungs. I really never had a choice if I wanted to survive. I would not survive radiation or surgery. My choice was to remove my larynx and breath out my neck. Also, I had a neck dissection on both sides level 2-5 and took 86 glands.

The reason I am saying this is there is always a chance something like he can't raise his arm above his shoulder.  I do know many that did happen to. Maybe I just had a better surgeon, but I was cut from ear to ear, [I'll leave out what was next] and removed my larynx. I am numb on the left side from my ear to my chin. I take a muscle relaxer so I have the full rotation on my neck to drive. If I don't take them my neck is stiff and I have 75-80%, and I wanted 100%. I have no problem with either arm being raised. They have to tell you because they are cutting almost every muscle and nerve. As for the hyoid bone, that was removed with my larynx.  When they took my larynx the tumor was in there so they got everything and more. I never needed radiation or chemo. Those were first explained with the hope of saving my voice.

You asked what does he gain?  The best chance to beat it. This is a choice he will have to make, and get the doctors input. If you don't have surgery and the tumor doesn't shrink completely, and then you have to have surgery they now have to cut through radiated tissue which is much worse than tissue that was never radiated. It also heals slower and can also have side effects.  I was told they got all of the cancer, and they even biopsied the lymph glands when I was still in surgery. I could have radiation if I wanted, but my Head doctor was not recommending it, the radiologist wanted it but he was overruled by all the others on the team.

Whatever choice he makes, don't ever go back and second guess it. He will make the choice that is right for him.

Prayers help too.  I know because I'm still alive and only 5 thought I would be.

Bill

Thanks WMC

The Team of Drs. opted to do Chemo for 9 weeks ...Cisplating and Abraxine.  Both will be combined every three weeks on the weeks inbetween it will be Abraxine only.  All of this followed by 7 weeks or chemo/radiation.  He's a part of a test study which has had good success so we shall see.  None of this is easy.  Our road has been a bit rougher because of the scheduler for one of the oncologists dropping the ball on 7 appointments...We get to them and not appt. has been made and no Dr. orders have arrived.  It's ridiculouis.  This should not happen at Siteman.  I'm concerned if we complain to them more than we already did they will kick him out of the program.  I suppose they could so we will roll with the punches.