Decision Time

While I'm just my husband's caregiver, after seeing all that he has been thru with radiation, chemo, surgery, second round of radiation and chemo, and all the side effects from the radiation (his was laryngeal cancer and 2nd primary of cancer at the cervical of his esophagus and then spread to lungs) I would opt for the surgery first and I still have my tonsils.   Radiation the first time, did a job on my husband's throat and they had to reconstruct this throat during surgery.  He had a must easier time with the surgery than he did with the radiation and chemo.

Just remember everyone is different in how they react to any treatment and that includes removing your tonsils.  I know they say it is harder on adults when they remove their tonsils, but times have changed and methods have improved.

Wishing you the best -- Sharon

G55,

In your case (it sounds like) you are more comfortable with surgery followed by “cancer monitoring”.  That leaves options on the table for downstream

When the decision was mine, I opted for surgery, rads and Erbitux.  I wanted the cancer gone!  In hind sight, I truly did not understand the reality of side effects, but life is good and things have improved greatly and I would do it over again.

I also think to properly stage and map H&N cancer a PET scan is essential, but that is just me.

Good luck,

Matt 

Mine was Stage 3 supraglottic SCC T3; N0;M0, when I say the tumor board. First Dr that came in was Rad Onc. He was saying we'll do 5 weeks of Rad. [He had not seen all my other health conditions yet] Then came in the Surgeon and some other Dr. and 15 more, it's a teaching hospital, and they all looked down my throat. When we broke for lunch I saw one of the Dr in the hall and he said " you don't sleep good do you", No I don't.

Now let me go back to before I went there. I wanted surgery first to remove the tumor. I had seen the photo of it and caughing up large amounts of blood and had silent asperating, food going down the wrong tube and not knowing it was happening. I have Stage 3 COPD, lungs look like a hand grenade went off in side, MRI photos. I did not want radiation first and was ready to tell them.

Well the Head doctor who I wanted and did get is the head of ONC and the head surgeon as well. I'm prepaired for anything he could say. Well, I guess I wasn't ready for what he said wnen he told me my lungs are to bad and I cant survive radiation or surgery. I think I stopped breathing for several seconds. I was not ready for that. He then said they could do the surgery if I had a Trach put in. This would be perminent and they would remove my Voice box [Larynx] as well, and I would breath through my neck, but I could survive the surgery. They would do a neck dissection on both sides level 2~5 as a precaution. Now after the PET/CT I went to T4;N2;M0. Well I got what I wanted in a way. We did the surgery and I did not need Chemo or Radiation. Because of surgery first I healed very good. I got lucky, I ended up T3,N0,M0. Now the left side of my neck from ear to center of chin is numb and always will be from the surgery.

I healed very well and was able to learn to talk in 17 days and eat anything I wanted to. Start on soft and go from there. Got back to work full time in 10 weeks. I have been NED for 13 months and don't expect anything to come back. But I could do radiation now if needed. There saving it for my lungs in the distant future. Oh, I still have my tonsils, go figure.

I felt that you remove the tumor, don't shrink or try to kill it. If they can remove it that's what I wanted, you can always do radiation later. I never had a real choice. Mine was this or nothing, and see you later. I like the surgery...... I would take both out. The pain will be the same just on two sides but not more, and they will keep your pain undercontroll very well. I had no pain at all on the third day. Had some pain when the drain tubs came out but not bad. Why have to go back and for the other one. Most children that had then removed always had both.

What ever you do chose to do, don't ever try to second guess your dission, always beleave it was the right one for you. You have to have faith in your doctors, and they do listen to you, and you have the final dission. You must have even more faith in yourself. You are the one that really decides how well you recover. Dr tells you to walk three times in the hospital do five. Belive in you. I was told persons with a laryngectomy can't, blow there nose, whistle, blow out candles, and many other things. I can do all of that. [Go to my expressions and There is a video, and some photos after the surgery as well] Best of luck with your dission I'm sure it will be the right one for you.

Bill

gdawg55 said:

Thank you everyone for your

Thank you everyone for your input.  You all have been through so much and I appreciate your kindness.  Bill, I think similar to you here....get in there and remove it if possible, then go from there. That's the main reason I'm considering surgery first.  Let's get this desease out and if that's all that's required then bonus for me.  If they don't get it all or I have some in my neck then I'll certainly get in line for the radiation machine.  Just hoping to have to miss this step all together.  I can't help but think surgery offers the shortest recovery with the least amount of side effects.  I suppose taking both tonsils aout while there in there does make the most sense.....just thinking if they take only one, then maybe healing is a bit quicker with a little less overall pain.

Thank you all for your input.  God bless you all.

Based on what you posted I'd make the same decision: surgery to remove the primary and some nodes to look for any locoregional mets. Better chance of less long term side effects avoiding chemo and radiation. But surgery is not a picnic nor free of long term side effects. There are plenty of folks who have long term nerve and pain issues related to surgery.

Battling oral SCC cancer under all conditions is never an easy trip but if you trust your doctors then trust their recommendation, charge ahead, and never second guess your decision.

Good luck

Don

gdawg55 said:

Thank you so much,

Thank you so much, Bill....that's a very nice way to think about it.

And, you'll probably get your 2015 deductible met the first week of the year.  I know I did - I went into the er on Jan 2 - stayed until the 10th, had a trach on the 6th.  went back in on the 12, and stayed to the 28.

Tonsilectomy and neck dissection will be a breeze!

Lorna 2007 & 2014

I just saw this and can offer up my husband's experience. He was given the exact same choice for the exact same diagnosis. Actually, initially the plan was just chemoradiation after the initial biopsy surgery which, itself was no piece of cake. His pet scan was inconclusive as to whether there were lymph nodes involved.

He got a second opinion at Stanford and their tumor board suggested that he have left side neck dissection and tongue surgery to see if any tumor remained after biopsy surgery. Their hope was to find no lymph node involvement and if he had clear margins, no radiation. If there was lymph node involvement he would have radiation, but no chemo, unless they found extracapsular spread.

His recovery from the neck disection was pretty straightforward. I know that tonsilectomies are quite painful but only for a few days. you have to stay on top of the pain with meds and really must also take a laxtive since the meds really mess things up. Don't wait on that!

But more to the point: they discovered that he had 4 lymph nodes with cancer,  one with minor extracapsular spread. So he needed the chemoradiation after all. But here's what I believe: even though he needed the treatment anyway, it seemed that more information was better. The field of radiation is more targeted and it seems compared to many on here that he had fewer side effects from radiation. If he hadn't had the dissection, we wouldn't have known about the extracapsular spread and perhaps not treated that enough. 

The whole ordeal was pretty terrible of course, but I'd say within a month or so from the end of treatment, he was 80% back to normal. Now, a year and a half out from the end of treatment it just seems like it was all a bad dream.

We were hyper-vigilant about nutrition and somehow either througnh luck or diet he avoided thrush which was big. If you can start some kind of strong probiotic regimin (doctor approved, of course) it might make all the diffrence.

Of course, every person reacts differently, my husband was pretty lucky, I guess, and I hope you will be too.

Helen

Good Luck,

Helen