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Is it normal to have surgery before radiation?

ScaredLilSis
Posts: 12
Joined: Sep 2013

Hi. I'm new here. my brother was recently dx with stage 4 ssc of tongue and tonsils. He had a pet scan Friday and will get the results Monday. My understanding is that if the cancer has not spread, he will have a surgery to insert a feeding tube and then a few days later he will have a 12-15 hour surgery to remove the cancer and do reconstruction. They will take skin from his leg and his arm for the reconstruction. Then he will be in the hospital for two weeks. Sometims rafter he comes home he will start radiation and/or chemo. 

It seems like a lot of other people have started with radiation before having surgery. Does anyone know why they might be doing the surgery first?

Also, one of his doctors said that his lymph nodes "felt full". Does this mean its likely that the cancer is in his lymph nodes? 

I am not directly involved in his treatment so I'm getting all of the information second hand. Does this sound like standard treatment?

Aloso, does anyone have suggestions on how I can best support him? Right now he is terrified of both the surgery and the possibility of dying.

Aher suggestions, advice or information would be appreciated.

Thanks!

hwt's picture
hwt
Posts: 1836
Joined: Jun 2012

Sorry to hear of your brother's situation. My cancer was of the jaw and yes, I had surgery first followed by rads and chemo. Lots of tonsil and tongue survivors on here so I'm sure they will post. It would not be too unusual for the cancer to also be in the lymph nodes of neck, mine was. You might direct your brother to this site. It will be encouraging for him to see how others in the same situation are living good quality lives. It is a difficult journey but doable. My surgery was 19 hours and I also spent 4 days in a planned induced coma then 2 weeks in ICU. That time was much harder on my family than it was on me. I really only recall the last 2 days in the hospital.  Radiation was tough on me but I got through it, like everyone else here. The best advice that I got when starting this journey was to always have an extra set of ears at my docotr appts. to listen and take notes. Encourage your brother to write down his questions to take to appts., not to read too much on the internet and things will start happening fast so a calendar is very helpful.

Prayers to your family

Candi

MarineE5
Posts: 746
Joined: Dec 2005

ScaredLilSis,

Sorry to hear that your brother is traveling this road, but you found a very good site for information, Candi covered a good bit already. As Candi mentioned, an extra set of ears is helpful, take notes and ask questions.

I too had my surgery first, had a couple of Lymphnodes involved and had a Radical neck disection to remove any questionable Lymphnodes besides the two that were found. One reason many Doctors do the Surgery first is that the Radiation changes the DNA in our tissue. Causing the healing process to be a little bit longer.

Your brother will more then likely start his radiation about 6-8 weeks after his surgery in order to heal for that period of time before the RAD's start.

Yes, your brother and whole family have had their world's tossed upside down at the moment, but as mentioned already, all of you can get thru this together. It is a bumpy road, but you will see the many people here that have been down the same path and will offer many good suggestions as you ask the questions.

My Best to You, Your Brother and Everyone Here

ScaredLilSis
Posts: 12
Joined: Sep 2013

Thanks.

ScaredLilSis
Posts: 12
Joined: Sep 2013

Thank you Candi and Mairne05 for responding to my post and for giving me information and support. It's good to know that others have gone through this and come out the other side. I will definitely let my brother know about this wonderful site.

phrannie51's picture
phrannie51
Posts: 3624
Joined: Mar 2012

nobody wants to join.  Many people have surgery first, then radiation.  It all depends on where the cancer is located.  I had nasopharyngeal carcinoma....there is no surgery for that, so I didn't have any surgery at all.  However, had the radiation/chemo not hit the lymph nodes after the rads and chemo were over I would have had a neck dissection....I got lucky. 

When we're novices at the "c" word....dying is right where we all leap when the word is first mentioned.  But as you will see on this forum, that's not where the majority end up....we all here to help and support one another, and those who are following in our footsteps.  The surgery he is facing is a long one....after all, they aren't just taking out his tonsils and the spot on his tongue, but are rebuilding using skin flaps from other areas of the body.  A number of folks on here have had that surgery, gone thru the chemo/rads....and are back to doing what they used to do. 

This is the best...most knowledgeable....most supportive....most positive....forum on the internet.  ALL questions will be answered quickly...and no question is out of bounds.  There is a ton of experience here to help make his journey as doable as possible.  If you can, encourage him to join (or his wife if she is inclined)....The Drs. take care of the medical end of things....but we are great at the details on how to make it through....things the Drs. don't even think about.

He is going to get through this....it's a rough patch on the hiway.....but he'll soon be back to pavement again....sailing along, seeing this experience in his rear view mirror.

p

ScaredLilSis
Posts: 12
Joined: Sep 2013

Hi Phrannie,

Thanks for your reply and encouraging words. It seems like this is a good place to get information and support.He will get the results of his PET scan first thing tomorrow morning. Fingers crossed!

CivilMatt's picture
CivilMatt
Posts: 2861
Joined: May 2012

ScaredLilSis,

Welcome to the H&N forum where many of us started out scared to death (and of death).  The frightened feeling let up (some) once you get your plan and realize people do live (and live well).

I had surgery on the base of my tongue and a Jugular vein dissection to remove the two locations of known cancer.  My surgeon mentioned having surgery last, just encase the Jugular vein was too involved, but it was doable and he did.  I healed from the surgery very well.

How you support him depends if your close enough (distance wise) to be hands on or can offer only moral support from a distance.  Each can be very helpful.  You will just have to evaluate your place in his treatment train.  Some siblings get right in the thick of treatment and care.  For me my wife was my caregiver and “wheel man” (you see I took one Lorazapam for rads and could not drive).

Others here have gone through what you have described for your brother and they are doing well.  I would think your brother will do well too.

Matt

ScaredLilSis
Posts: 12
Joined: Sep 2013

Thanks Matt,

I'm glad your surgery went well. I was curious if they took a vein from your arm to do the reconstruction in your neck. I think that is the plan for my bro.

debbiejeanne's picture
debbiejeanne
Posts: 2278
Joined: Jan 2010

sls, welcome.  very sorry to hear about ur brother.  i'm also glad u came here and i hope he will come as well.  he can learn all about his tx from people who have already gone thru it or is going thru it now.  there r probably several here w/the same cancer as your brother who will be able to help him know what 2 expect.  they will answer any/all questions you or ur brother may have.  info from here is much more up-2-date and correct than anything u will read on the internet b/c these people have lived it.  you will also see here that the tx is very doable and people ARE SURVIVING!  check out the Superthread (very 1st topic on the page), it has tons of info about EVERYTHING.  please keep us posted on ur brother's progress.  if he joins the forum, ask him to mention that  u r his sis so we put the 2 of u together.  God bless.

dj

ScaredLilSis
Posts: 12
Joined: Sep 2013

Thanks Debbiejeanne. I did tell my brother about the site and he was glad to hear that there are people who are surviving and doing well. He's on pins and needles waiting for results of PET scan to see if he can even move forward with surgery. It feels strange to hope he will have a chance to go through all this awful treatment but its better than the alternative!

Laralyn's picture
Laralyn
Posts: 436
Joined: Apr 2012

Is the cancer HPV+? If so, many treatment centers are starting to opt for radiation + chemo first, and surgery only afterward if the cancer is still present. That's how I was treated.

It's probably worth getting a second opinion, especially if you have a major cancer center or teaching hospital near you. Hope this helps!

robswife87's picture
robswife87
Posts: 175
Joined: Mar 2013

My husband has SCC Tonsil with lymph node involvement. No surgery. Had radiation and chemo. We go for first PET scan Monday.

If anything remains then surgery will be done. They felt the area gets zapped with the radiation and found through trials that there was really no significant difference in doing surgery first.

Sandy

ScaredLilSis
Posts: 12
Joined: Sep 2013

Hi Laralyn,

I'm pretty sure his cancer is NOT from HPV but from years of heavy drinking and smoking. Is the prognosis all ally better with or without HPV?

 

robswife87's picture
robswife87
Posts: 175
Joined: Mar 2013

My husband is a heavy smoker, hasn't drank much in the last 20 years or so but teens and 20's drank like a fish. His cancer is HPV+. 

Treatment will be the same HPV or not, but research says overall outcomes are better for HPV derived cancer.

Sandy

ScaredLilSis
Posts: 12
Joined: Sep 2013

I actually haven't asked that question but it seems like it would be good to know. Thanks for the info.

fishmanpa's picture
fishmanpa
Posts: 1105
Joined: Jan 2013

My cancer was HPV+. Due to an unknown primary and some rather agressive tumors, my team opted for surgery first, followed by chemo/radiation. It all depends on your situation. A second opinion, as Laralyn mentioned, preferrably from a CCC is prudent.

"T'

ScaredLilSis
Posts: 12
Joined: Sep 2013

Thanks for suggesting a second opinion but I'm not sure its an option because he has no insurance or $. The first hospital he went to (local) said it was too advanced and there was nothing they could do. They sent him to a large teaching hospital. Although he has now applied for financial assistance through Medicare he hasn't been approved yet. Other than this hospital, I don't know if anyone else would see him with no insurance or funds.  

TracyLynn72's picture
TracyLynn72
Posts: 645
Joined: May 2013

I'm not sure where you are located, but I did not have insurance either.  I had TWO major surgeries followed by 30 rads.  I applied for Medicaid and it took them over 5 months to approve me.  Tell him to keep on Medicaid.  Annoy them.  Stay on top of what they want from him.  Take notes.  Make copies.  I had to fight for months but finally got what I needed.  I went through Levine Cancer Institute and told them upfront that I had no money or insurance from the beginning and they understood and  helped me anyway.  Best of luck to him and tell him to keep pushing on.  I had my surgeries at a major hospital through one of the top surgeons with a major cancer institute.  I just was honest about the situation from the very beginning. 

ScaredLilSis
Posts: 12
Joined: Sep 2013

Thanks for the advice. He seems to be getting good treatment even though he hasn't yet been approved for Medicare or Medicaid. I'm glad you were also able to get the treatment you needed and to finally get approved.

Benjamin.Brown's picture
Benjamin.Brown
Posts: 1
Joined: Sep 2013

Hi Tracy, 

My name is Benjamin Brown and I am the community manager for Carolinas HealthCare System (Levine Cancer Institute is a part of our system). I wanted to take a moment to thank you for your positive feedback about LCI and for sharing that with your community. We sincerely appreciate it!

Sincerely, 

Benjamin M. Brown

Community Manager

Carolinas HealthCare System

http://www.carolinashealthcare.org

TracyLynn72's picture
TracyLynn72
Posts: 645
Joined: May 2013

I LOVE the Levines and CMC!!!  Nothing but good things to say about them :)

Roar's picture
Roar
Posts: 237
Joined: Mar 2013

the same treatment after surgery for me - i had 1 lymph node removed followed by chemo three treatments and 32 rads - at he end of treatment my doc added 8 more rads aimed specifically at the lymph nodes in my neck

sin9775's picture
sin9775
Posts: 191
Joined: May 2013

Hi Lil Sis.  I happen to be a Big Sis in this journey we are on.  It is not easy loving someone and not being directly involved.  You have to get all of your questions answered either by your brother or his spouse (if he's married).  You will feel like you are bombarding him with questions.  You will worry that you will increase his anxiety with your questions.  He may need to know less than you "need" to know.  Been there.  You have found the right site.  The people on here are amazing, not only in knowledge, but in spirit.  They will lift you up when needed, but not sugar coat things either.  Our whole family assumed that my brother's cancer was related to his heavy drinking and smoking, but he is also hpv+.  Your brother won't know until he is tested.  The prognosis for hpv+ throat caner patients is very good. The treatment will be the same, regardless.  It won't be easy for him, and your heart will break for him.  My brother is 8 weeks post treatment now and is SLOWLY recovering.  Just keep bringing your questions here.  You will get your answers.

There is at least one other person on here that also has had to deal with this with no insurance.  I am sure she will chime in.  From what I understand, it took a couple of months to get approved by Medicare, but she did. There is so much to worry about with the cancer, my heart just goes out to those who have to worry about money on top of everything else.

Hang in there.  Prayer has helped a lot of us here, and we are all willing to pray for others on this site.  I will add you and your brother to my prayers this evening. 

~Shawn~

ScaredLilSis
Posts: 12
Joined: Sep 2013

Hi Shawn,

I am glad to hear that your brother made it tsurgery treatment so far and is starting to get better. I very much appreciated your post- many of the things you said really hit home. Bro is divorced so mom is taking care of him. I just asked her and she said no one has mentioned HPV in all the doctor visits she has been to with him. I am out of state so can't I can't help with the day to day stuff but am close enough to visit often Which I will do. I will also be there for his surgery this week.

I will keep touch and and let everyone know how it goes.

Thanks again!

 

Skiffin16's picture
Skiffin16
Posts: 8057
Joined: Sep 2009

I too had STGIII Tonsil Cancer with a lymphnode, HPV+...

Tonsils came out first, then nine weeks of chemo (three week cycles), and an additional seven weeks concurrent with radiation. The reason that I can see of having surgery first is to remove infected tissue, then clean up any residual with chemo and radiaiton.

HPV is a biggie as for H&N cancer these days.., though treatment is pretty much the same regardless... If I were to have someone that I know now, that was Dx with H&N cancer, and no mention or suspicions of HPV were mentioned, I think I'd be skeptical of the MD's..., or at least question them.

I think most of us that haven't been exposed to a lot of people with cancer, feel they are going to die.

Myself included, when Dx all I thought about upfront was pale, no hair, no color people that eventually whithered away and died..., far from reality.

This is the best time in history as for treeatment, knowledge and success rates on treating cancer successfully... So get the dying thoughts out of your head..

Speaking of which, a positive attitude is huge, find one, keep it, and stick those nay sayers in your back pocket for later..

Hydrate, hydrate, hydrate....

Many here will help with anything you encounter or question...

Best,

John

ScaredLilSis
Posts: 12
Joined: Sep 2013

Hi Everyone,

My brothers PET scan came out clean - so no spread of the cancer. In addition, this hospital went in to look around and do their own biopsy and they said that its probably stage 3 not 4. They canceled the 12 hour surgery and sent him home to do radiation and maybe chemo. So I guess this WAS the second opinion that people were suggesting. I still don't know if they found HPV or not but its kind of hard to get information. I'll probably found out when I can see him and talk to him.

Once again I want to thank everyone for their support, advice and information. I'm sure I'll have more questions as he gets into treatment. But for now, I'm going to focus on it not being as bad as we were originally told.

 

TracyLynn72's picture
TracyLynn72
Posts: 645
Joined: May 2013

to hear he got good news!!  Keep us posted on how he's doing and check in often :)  Tell him to stay on top of them at Medicaid.  They're dropping me the end of this month, so I'm on my own after that.  It's a hard fight, but worth it in the long run. 

jackflash22's picture
jackflash22
Posts: 225
Joined: Aug 2013

I had surgery first, mine all happened very quickly. I found a swelling in my neck  between the ear and jawline. I saw my doc, he recognised the signs immediately and sent me to hospital for biopsy, biopsy showed a cancerous nodes,  the primary was base tongue cancer, surgery neck dissection, three cancerous nodes removed and 29 healthy ones. Tumour at base of tongue removed and repaired with the inside of my cheek. That meant I didn't have to have a flap cut from my arm or skin graft. recovery was quick the tongue felt normal and  I got my swallow back. The surgery healing wasn,t painful as you are numb where nerves are cut. Thetough bit was the trachea in my throat it kept getting blocked with mucus but they 'hoovered' that out and cleaned it. That lasted about a week. I think it's because it's such a long op it affects the lungs a bit. I now have 6weeks of radiation without the chemo. had first one today. The mask is a bit tight so you don't move while your being zapped. That to protect the healthy cells, the radiation is computer planned to hit the cancer  Everything is so clever these days. You probably have read of cancer side affects which are different in different people. My rad is about 10mins once I,m lined up. I,m told I won't have much affects the first 10days then there is medication and sprays to help you.  My room mate in hospital her rad first and her skin on her neck just wouldn't,t heal after surgery because the rad made it thin and sore. She,s fine now tho'. I,m having my PEG  put in next week, may not need it but its there if I do. Tell your brother to stay positive it does help if you keep telling yourself "I will be  OK "and have a nice holiday after its all over.I,m planning mine in Spring in Florida with my sister who lives on the space coast. I,m in Uk so it will be a pleasant month inth he sunshine after a cold British winter

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