Women who don't have BRCA mutations could have other high-risk genes that affect treatment choices
by rbhdjf77 on Mon Apr 23, 2012 12:38 AM
My husband has been diagnosed with tonsil cancer and based upon a needle biopsy it has spread to at least one lymph node. He is scheduled for a neck dissection surgery. Any advice on what to expect and how I can best help him through the surgery?
PET scan does not show any metastases, but who knows....
Seems like a brutal surgery....
Thanks in advance for any help.
by Chrismd on Mon Apr 23, 2012 12:52 AM
I had a modified radical neck dissection, one side only.
They took something like 42 lymph nodes, two of which had lit up as cancerous on my PET/CT scan.
I had 2 drainage tubes for a week or so.
I had my cancerous tonsil removed at the same time. The tonsil removal hurt the most.
I still do daily neck stretches, due to stiffness from the surgery (I'm over 5 years out of treatment).
So, it's not so horrific as it sounds.
by Sdurnell on Mon Apr 23, 2012 10:21 PM
I had a partial neck dissection shortly after my cancer was diagnosed. No tonsils to remove (and no primary every found), but my ENT took all the lymph nodes on the left side. One was cancerous, but it had clean margins, meaning that the cancer was encapsulated in that one node.
The surgery was very minor for me. I took one pain pill, in the hospital, because the nurse was so insistent. I was teaching in less than a week, and no one even noticed the scar.
The treatment after was what taxed me. Compared to the radiation and its effects, surgery was not much at all. My son and his friend took out my stitches on Thanksgiving as entertainment between turkey and pie!
Best of luck to your husband and to you. He will need you as the head of his support team, and you can do it!
by rbhdjf77 on Mon Apr 23, 2012 10:33 PM
Thanks for telling me of your experience...it's very intimidating to think of this surgery....I had no idea there are so many lymph nodes in the neck, glad to know that. I've heard about the drains and knowing they're in a week or so is helpful.
The stretches sound like a great idea so we'll have to plan on that.
Congratulations on being 5+ years out!!
by rbhdjf77 on Mon Apr 23, 2012 10:36 PM
Thanks for the upbeat prognosis for the surgery. We're taking one step at a time and the surgery is step #1. My husband has been told he will prbably need the radiation as well.
Wish you well with your recovery.
by ianelliott on Fri Apr 27, 2012 11:21 PM
Hi, I have just seen this message. It has been almost 3 years since my surgery. I have no idea if your husband's tonsil cancer is connected to any other parts in his mouth (mine was also connected to my tongue, my soft pallette and my jaw bone), your ENT will help you here. I wrote a blog which can be found atwww.ianstonsilcancer.blogspot.com I wrote it to help other folk get through this. I still have some problems and I am still trying to resolve them but guess what? I am still here and I am enjoying my life!! Knowledge is what you need to see what you have in front of you. You can do this!!
by wyckfordpond on Sat Apr 28, 2012 12:47 AM
I will have my tonsils taken out on Tuesday and they will look for the primary. Like your husban I have a lymph node that will need to come out after they find the primary or not.
I'm not so sure reading negative stories has done me any good. If people want to focus on woundedness and pain and call it being real then I need to read past it. Sure cancer is a journey and it can be used to help others. If people want to help me than pray for me. That's what I am going to do for you and your husban. God bless us all.
by wyckfordpond on Sat Apr 28, 2012 12:52 AM
I love this story it was well done and up beat.
by pineconepeg on Sat Apr 28, 2012 09:42 AM
I wish I had seen this post sooner. My husband has cancer in and on his left tonsil, and also in 3 lymph nodes on the left. He still has his tonsils. Our doctors told us that it is better to do the radiation and chemo with the tonsils in place. They said they may remove the lymph nodes at some point if they remain large and unsightly. I'm not sure why your doctor chose a different plan of action, but you may want a 2nd opinion.
by rbhdjf77 on Fri May 04, 2012 04:08 AM
Well, it's been a week since my husband had his neck dissection surgery. He had both tonsils and 18 lymph nodes removed. 3 of the 18 lymph nodes were positive for cancer. While the scar from the external surgery looks wicked, it caused very little pain. Inside the throat was another matter being very painful and uncomfortable. A couple hours after surgery he began coughing up and throwing up blood. A doctor worked about 2 hours in the room trying to cauterize the areas bleeding. Finally a surgeon became available and he went back into surgery....with a stomach full of blood. So he was high risk for the second surgery with concern for aspiration into the lungs during surgery. Anetheseologist took precausions in case this were to happen. Second surgery took about 2 hours. Per the surgeon as one bleeder was stopped, another would begin so they ended up having to use additional stitches to stop the bleeding. Turns out this bleeding is one of the risks of having one's tonsils out and can be serious if bleeding to too fast/much. My husband lost at least a unit of blood...but he used to donate all the time, so his body was used to that. Pain management after second surgery was tough. He was on IV morphine and oral hydrocodone. Problem was his throat was so raw he could not get the hydrocodone donw. Finally primary surgeon ordered 12 mcg Fentenyl patch and that did the trick. Beat the pain, don't wait until there's pain to take meds. A couple days later, the next challenge was vomiting everything....a quick presciption of anti nausea medication took care of that. Just had staples taken out from neck...incision ran from just behind ear, straight down 3-4 inches then across the neck to the other side of his adams apple.... The incision is doing well and hides nicely in the lines of the neck (and my husband doesn't have a double chin). Eatting is still difficult and he's on soft food like soup, popsicles and scrambled eggs. So all went relatively well...just watch for that bleeding complicaiton and get the doctors to act on it ASAP. Next is to see oncologist and radiologist. thanks to all who have provided information.
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