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Surgery vs. No Surgery Please Weigh-In

Kimba1505's picture
Kimba1505
Posts: 557
Joined: Apr 2010

Hello everyone,
Mark had his diagnostic endoscopy/biopsy today...and the good news is nothing was found that wasn't expected to be found. The other good news is he is HPV16 and has two very good treatment options:
1. Surgery to remove primary in the left tonsil (robotic - very precise, and less envasive) with lymph nodes removed a week later. Lymphnode removal has the POSSIBILTY of being a RADICAL neck disection. With this plan I believe the thinking is the more that is removed surgically fewer sites need to be radiated and with possibly less intense radiation.

2. Radiation and Chemo only...with what I imagine to be more intense radiation, more sites, and carboplatin (sp?)

Our considerations are of course survival...but survival with preserving as much quality of life as possible. I know there is a range of side effect outcomes and everyone responds differently. Eating is a huge pleasure of Mark's. Radical neck disections concerns him regarding disfigurement.

I am looking for "no bones about it" feedback. Are you for #1 or #2 and why???? Give it to me straight.
Kim

stevenl's picture
stevenl
Posts: 587
Joined: Jan 2010

Kim,

I was not given a choice. My ENT saw me twice, an initial and a second after a needle biopsy. Surgery 7 days later. He was very quick and set everything up for me. What I am saying is he set up my entire medical team. The mass on my neck practically doubled in size in 1 month. The mass and lymph nodes were removed at the same time. I had a tonsillectomy
and 2 other procedures done. I am glad that I had the surgery. The tonsillectomy prepared me for the rads and chemo. What I mean is the tonsillectomy was as hard on me as the rest of the treatment.

The scar is not bad and the only bad thing is that my neck is real tight. But that has gotten a lot better with some exercises I am doing now. The area is numb and there is no pain for me there. The pain was the tonsils. To me, it really was worse than the treatments.

So, based on my experience, I would use every option to eliminate this monster from my body. I would go for the surgery and the chemo and rads. But I was stage 4 with mets to the lymph nodes. People on here like John,-Skiffin16, had no surgery and are doing fine.
I did pretty well with treatment and did not have the bad side effects like a lot of people have. God bless you Mark and Kim what ever you decide. I will be praying for you both.

Best,
Steve

P.S. I am 3 weeks post treatment

Terri_Nag
Posts: 7
Joined: Jul 2009

Hello Kimba. I have read a couple of your posts because we have been going thru the exact same thing since last June. My husband had the radiation and chemo before surgery was mentioned. The radiation and chemo did not get all of the cancer. He had a tonsilectomy and still found cancer in lymph nodes and behind nasal cavity. So in reguards to your questions.

You are so young. My husband, Gary, is 65. The surgery appointment did not go well because the dr. said he could not get all of the cancer and the surgery is so radical it would not be a good quality of life. The same thing was told to us about the neck surgery: disfigurment, plastic palet and a temporary trackeotomy (sp)... Gary's cancer, the dr. said is terminal by not doing anything...the dr. said to go LIVE.

It is such a hard decision for you to make and so soon after diagnosis. My heart goes out to you both and know you will make the right decision that will work for you.

Scambuster's picture
Scambuster
Posts: 975
Joined: Nov 2009

Hi Kim,

I wrote earlier on this but I opted to have the Surgery to remover the primary first (left tonsil). I think my Robot was my ENT Doc/Surgeon.

I had 2 lymph nodes that lit up in the scans but weren't too concerned about them so I did not have the radical/dissection surgery. I understand they did zap these nodes with the IMRT. I had Erbitux 'Target' Chemo and 7 weeks of IMRT.

Again, i suggest you discuss Amiphostine as a precaution to protect his Salivary glands. If the IMRT is set up well, they minimize collateral damage. The Salivary glans being zapped may happen regardless as they are so close to the tonsils. The taste issue will depend on how much and where the RT hits the tongue. I have most of my taste but am only 7 months out. I have pretty poor Saliva function but seem to regaining some now that I have been getting Acupuncture.

Hope it all goes well.
Scambuster

MarineE5
Posts: 744
Joined: Dec 2005

Hi Kim and Mark,

Not a easy decision either way. Basically, I had option # 1 done by Dr. W. Of course we e-mailed about this and he wasn't even doing the Robotic operations at the time of my cancer.

I too was concerned about survival, and quality of life. I know that I wanted the tumor out of me, period. Had 1/3 of my tongue removed and had the radical neck disection. You can tell that I had surgery on my neck if you look long enough, I've seen worse on other people. Allot depends on the number of lymphnodes removed and muscle taken. Mark may only need a modified neck dissection. I do have some side effects from the radiation and partial tongue removed. I am able to eat a good amount of different foods as long as they are moist. I can't eat steak anymore, bummer. But, I am here to enjoy my grandkids.

Dr. W told me that he prefers to operate first when at all possible, because once we are radiated, our DNA is effected in the radiated area and if he has to operate then the tissue is like wet tissue paper and delicate to work with. It takes longer for the tissue to heal after radiation.

I know of one person that my wife worked with and he was treated at the same time as me and he had no surgery. He had your option # 2 and he is doing well. He and I are out of treatments now 5 1/2 years.

My Best to Both of You and Everyone Here

Skiffin16's picture
Skiffin16
Posts: 8052
Joined: Sep 2009

Hi Kim,

It's really hard to tell what's the best choice for your husband. I can only speak of my experiences, which I'm sure you have read. Basically I was diagnosed with STG III right tonsil and a lymphnode. Like Steven, the lymphnode popped up relatively fast. I had minor discomfort in the tonsil area for a few months, the lymphnode tumor popped up probably in less than a month.

I saw my ENT on a Friday for the first time, that Monday my tonsils came out and he peromed a quick biopsy and determined at that time that indeed it was STG III SCC. The diagnosis of HPV came a few weeks later (although he was pretty sure that was the cause day one).

He was (and still is) the main or lead person on my team. They felt all along that dissection was going to be an alternative if the tumor didn't reduce or dissolve. Mainly because ofthe close proximity to the carotid artery, and dangers associated with that area. In conjunction with the other concerns you and others have mentioned.

I didn't really have an option, but I also trusted their experience and knowledge of their profession. In my case they were right and during the second round or third round of chemo the tumor dissolved.

I had nine weeks of chemo first (Cisplaten, Taxotere and 5FU) in three week cycles. Then seven weeks of Carboplaten and 35 rads 5 days/7 weeks. Also like Scam mentioned I had the Amifostine injections just prior to each rad.

I didn't have the thich mucous or phlegm, but did start getting fevers the last few days before the 35 was over, so I didn;t get Amifostiine the last few days.

My taste would come back during the nine weeks of chemo about the latter part of each second week period. Then somewhere along the line during the rads it was zapped out along with the salivary glands.

I finished all of my treatment last year June 18th or 19th. I have regained most all of my taste or at least about 85 - 90% but it's not completely the same. I can taste almost everything, but it's not as intense and a few things lose flavor rather quickly.

But, I can eat, drink, and gain weight (which I need to watch). I definitely still enjoy food and drink (especially water) and can survive. It may not be as good as before, but it's pretty darn good compared to what I had when I finished treatment.

I have also regained peobably 80 - 90% of my salivary function. That also has just been over the last month or so....

My treatment seems to have worked for me....best of all, "I'm alive". So when it come to Quality of Life, you have to still be alive to have that.

Also like Steven, and my team felt similar, even though I'm 55 (56 now), I was and am in good health. They wanted to hit it as hard as I could endure, having the best chance to kill it for good.

Those are all decisions that only you both can make (especially him). I know in my case that my ENT told me of a girl that went through just the Chemo, no neck dissection nor radiation. She is doing fine, but that he dosen't recommend taking that chance.

Would have I preferred not to have radiatiuon, of course. Do I regret going though it, no, I think between the chemo and radiation, it has allowed me to live a longer life.

Anyways, just my experience and two cents...
Best of Luck, God Bless,
John

stevenl's picture
stevenl
Posts: 587
Joined: Jan 2010

Hey John,

I am sorry, I had forgotten you did have your tonsils removed but no neck dissection. Is this right?

Steve

ratface's picture
ratface
Posts: 1231
Joined: Aug 2009

Personal opnion only. I am in the surgery court. I had chemo and radiation and a selective neck disection. The chances of a rogue cancer cell in the lymph nodes after chemo and radiation are relatively high and can lead to recurrence. I stress selective neck disection as this is where I would part company and consider not having the surgery if initial reports after chemo and radiation look good. You really have to consider a lot of variables at that point such as skill of the surgeon and facility as well as current physical shape and willingness to attend physical thearapy if need be.

I also think it's always your choice. Doctors can stronly suggest but in the end you have to make an informed decision. I had surgery against my Doctors advice just to better my odds. Disfigurement is really not an issue with the right surgeon. I saw a fellopw in group last week with a right and left disection that was not really noticeable. There will be some lymphedema, and nerve damage.

There is lots of information out there. Read read read. Also the order of procedures can be changed around and surgery done as a possible post treatment option. Good luck with a very difficult decision.

Skiffin16's picture
Skiffin16
Posts: 8052
Joined: Sep 2009

No worries Steve,

I didn't even think of it that way, I relized you were talking neck dissection. Yes, tonsils out, but not the neck dissection.

Very glad that you have finished and on the road to finally let your body start fighting back on it's own...you seem to be a strong guy also, so I'm sure you'll get there, it just takes awhile. Like me, I think you and I probably get a little discouraged because we don't have the stength and stamina that we are used to. So when we are doing things that normally had never caused a problem fatigue wise, it's frustrating. It'll get better he further out you go, I'm doing much better now in my 10th month or actually 11th month post treatments.

John

Landranger25's picture
Landranger25
Posts: 207
Joined: Nov 2009

I had SCC BOT with mets to one lymphnode right side. After an exploratory surgery taking biopsies everywhere ENT thought prudent and looking in lungs and down esophagus and into nasal cavity areas, he was convinced that BOT was only tumor and RT side lymphs. Was going to take tonsils during exploratory but left them in. Day after exploratory he took all findings to Henry Ford cancer board, Detroit area, and my "team" of Doctors came up with 2 courss of treatment. Radical neck disection with chemo and radiation or just the chemo and radiation. He told me that whichever I chose he thought the outcome would be no different. For my wife and I, that statement was what we based our decision on. I had just the rads and chemo. 75Gy in 33 sessions 5 days a week with no Sat/Sun. 18 "doses" per session, both sides of neck and BOT. 2 kinds of chemo in 3 week sessions concurrent with rads. 1st week, Monday all day cisplatin infusion. At end of day, pump installed and 5FU infusion for 96 hours sraight, pump removed Friday afternoon. 2 weeks off, 2nd week chemo same as first. 2 weeks off, 3rd week chemo same again. Just had 6 month PET and got the all clear from the oncologist. See ENT this Thursday and hope he agrees with Onco that all is well. I will be having my port removed soon should ENT agree with Onco. I would say my quality of life is good. Eating a little different but not much. Doc's said whatever is not back to normal in a year probably won't change after that. I have 6 more months to get a little better in that regard. Hope this helps. Good luck and keep in mind what was a good course of action for one of us may not fit the bill for someone else. Ask a lot of questions and find out as much as you can. Like my wife and I it sounds like you want the no nonsense approach. That's my ENT. No sugar coating, this will be a ***** but I'll be with you all the way. Our kind of guy. Hope yours is too.

Mike

fbcuthguy
Posts: 15
Joined: Feb 2010

Kim-
My team went with option 2 and have said that surgery in my case was a last resort. I had 9 weeks of induction chemo- taxol carbo, and then 39 rad with cisplatin every 3 weeks. I had an unknown primary, so there was no doubt I was going to get intense radiation. I did have a tonsillectomy as part of the many blind biopsies searching for a primary.

My tumor was located is an area that the ENT felt was very likely to result in serious after effects if they did surgery.

I am only 2 weeks out of rads, so I can't tell you anything long-term. The tumor began to shrink during induction & all of my docs say it is undetectable by touch at this point. It started out 2.5 x 4 cm, so that's pretty amazing!

I have compete confidence in my team (Vanderbilt).

I will be praying for you & Mark & whatever you end up doing.

Rob

Irishgypsie's picture
Irishgypsie
Posts: 331
Joined: May 2010

I just joined an posted new thread titled: confused in Rochester!

Have T2N2M0 IVa HPV+ Right tonsil scc with one lymph node involvement at Level II cervical area.

I'm a RN so I believe that surgery is a must if it is a operable tumor! But the next step is where I'm not sure. The tumor team that did my surgery feels that because my margins were so clear and that I only had one lymph node positive out of 38 that radiation would only be needed. however went to 2nd opinion at Roswell and the doc said the the research is too early on the HPV + tumors to decrease from standard tx and that I should get chemo (cisplatin) and radiation. I'm going to drive to NY city on Friday have 3rd opinion at memorial Sloan Kettering! Not sure what to do! This sucks!!!!! :( I'm too young for this crap! I'm so scared; I cry every day, I can't believe this is happening! I feel like my life is over! :9

Charles

Irishgypsie's picture
Irishgypsie
Posts: 331
Joined: May 2010

Hi, Sounds like me and Mark are in the same ball game right now :(; I had the tonsillectomy and right neck resection on April 6th. I am still confidant with my decision to have surgery because you don't need your tonsils; the neck resection just depends how much they have to remove. Mine wasn't bad yes; I do have a scar but I'm a military guy and a Registered Nurse; so I've seen plenty of scars. No big deal; just not sure about radiation alone vs chemo and radiation. I will find out on Friday for my 3rd opinion. I do have hope that having HPV+ tumors is good; even though I still get pissed off then sad thinking about mine a Marks bad luck; but everyone else on here got through it we will too! :) Mark is lucky to have a caregiver to help him. I'm single so will be relying on friends!! Keep me posted!

Charles

stevenl's picture
stevenl
Posts: 587
Joined: Jan 2010

Hey Charles,

Glad you found your way here, sorry for the reason. I was dx Jan. 15 with stage 4, scc.
Had the surgery, right neck dissection, Tonsillectomy and lymph nodes removed. Mass was pretty large by the time I got to surgery. Right tonsil found to be primary. Just finished treatment 3 wks ago.

I smoked for 40 years, drank 35 years and I am HPV positive. So which one caused it?
Answer, all of them. I had a relatively easy time during treatment. Had one trip to the
hospital near the end. I just could not quit throwing up. But once I got there it was quickly taken care of and stayed 2 nights to get everything straightened back out.

Hang in there Charles, if I can do it you can do it. Ask questions and the people here will help you, they certainly helped me.

Best,
Steve

sweetblood22's picture
sweetblood22
Posts: 3230
Joined: Jan 2010

I had SCC HNC Unknown Primary Stage 4. DX December of 2008. I am also a Fanconis Anemia Patient and due to that I could not have chemo. I had a modified radical neck dissection, they took my salivary gland and 23 lymph nodes. Three were cancerous, clean margins. I can tell you that I found a swollen lymph node the weekend of 10-09-08. My tumor by december was the size of a very large lemon by December. My neck was hurting, and it was limiting my mobility. Actually I think I have a picture of it on the second page of my expressions pages. I wanted that thing out of me! Yes, I was very scared of disfigurement. They were not sure what they were going to find when they got in there. Also they warned me that my left arm might hang limp. I told my parents before my surgery that I "felt" that the tumor was attached to my jaw. Just had a feeling, and it was. I am very lucky. I have a bit of paralysis on my lower left lip. A little bit of a curve to it, and a 'quirky smile'. My left arm is okay now. I could only bring it half way up after surgery, but now I can raise it to 95% of what it was. I am lucky, all things considered.

I think for me, if something is operable, I want it out. But that is just me.

I am glad that Mark has you. I am sure he is too. My best to both of you,

'sweet'

Kimba1505's picture
Kimba1505
Posts: 557
Joined: Apr 2010

Welcome Gypsieguy...sorry you have found yourself here...but you need to know in the few short weeks I have been on the boards...I have found understanding, strength, knowledge, and freindship. All good things going into the battle to be fought.

I am so grateful for all of your input regarding surgery/no surgery...for those of you who have said "cut it out if you can"...I am of that thinking too. We are concerned about the radical neck but as our surgeon said yesterday, "the body wants to live; the brain will accept a skinny neck". Mark was convinced...and there is still a possiblity that the neck could be modified/selective. Surgeon will not know until he is in.

So, following the surgeries he will probably have radiation and cisplatin. Doctor for some reason is still saying "maybe just radiation". I guess the margins are what tell. Surgeon is very confindent about his cutting, especially since the tonsilectomy will be TOR (robotic).
It all begins tomorrow...they are firing up the robot...thank you again for all of your support!!!
Kim

sweetblood22's picture
sweetblood22
Posts: 3230
Joined: Jan 2010

Wishing Mark the very best of luck tomorrow. I am amazed at the fact that it will be robotic. I guess I am "that old" where these things do amaze me.

As a skinny neck myself I have to agree with the surgeons assesment! I had my tonsils out as a kid. I guess it is worse as an adult. Better get some ice cream ready.

I am glad that you found your way here and you are both prepared for battle! Charge!

MarineE5
Posts: 744
Joined: Dec 2005

Last week when I was there for my Pet Scan,I was in a small room with the curtains drawn so I could relax before the Pet. On the other side of the curtain, a patient came in and the nurse asked who his Doctor was. He said Dr. W. Anyway, I asked him a few questions and he said that he was the 30th patient that Dr. W did the Robotic operation on. He said he was doing good. The Nurse heard us talking and told us to be quiet. : )

We all will be thinking of Mark and you tomorrow.

My Best to Both of You and Everyone Here

rozaroo
Posts: 667
Joined: Apr 2010

All my best to both Mark & you tomorrow. You are in my thought's & prayer's.
Roz

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