hello all, I wanted to know what will my life be like after the neck dissection that is coming up very fast. My doctor said that he will know how extensive the surgery will be only after he had me on his table with a gash in my left neck. Say it becomes clear that it has to be a Radical neck dissection, what might I expect? I am being strong for my whole family that tell me just to keep a good attitude,"you'll be fine"! Well hello? I have recurrent cancer. The first time around was a walk in the park really compared to some of the stories I've read about. even though I was staged at level 4 SSC of Toncil the first time around. But this time it feels so much more real. This time RSSC with met to left neck is what I have to deal with. I don't think my family knows how bad my odds are. Don't get me wrong I am very hopeful and taking care of what I have to. But I keep thinking this will be the last family bbq that I will be for lack of a better phrase, "In tact". I am so worried about the fact that I am HIV+ and the last treatment hit my numbers hard. And now that their starting to inch up. I am worried about the annisteshia I don't care about the spelling right now.I been on one sort of benzodieasapine or another for 20 years (daily use) And I take suboxone which is opiate replacement therapy without the daily treks to the methadone clinic. so I have tolerance like a moe foe. So that's tolerance to tranquilazers and opiates. What if I wake up? That cant be pretty. And will they be able to control my pain? My mind has been altered by these medications for years and years. I don't know that they can overcome my tolerance. A am really hoping that out there their is a addiction speiselist who likes to write prescriptions. So if you were his patient or the patient of some similar doctor will you let me know how things went . And I know that no one can tell me for sure , there are so many variables . Somewhere in the ballpark would set well with me. Thanking you, Shawn U.
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Shawn,
I had a bilateral neck dissection in October 2012 (and I had woken up during a previous surgery - my body is weird with drugs in general - but my surgery which was 14 hours went without issue). I can tell you that I came through fine, and within 6 months was playing baseball.
I can't speak to the HIV issue, but the best advice I can give is for you to be completely honest with your doc about the issues.
The surgery isn't that bad - you look like a train wreck, but there really wasn't much pain as the nerve damage prevents it. I was off all pain killers in 4 days.
Good luck with everything.
Actually, I thought that the neck dissection was a piece of cake compared to the radiation and chemo. I also had one third of my tongue removed. The radiation is what has really done a number on me.
Shawn,
Sorry about the recurrence but where did it recur?
There are risks with any surgery, and it also depends on the experience of your ENT. I had three neck dissections, two that were radical, and one of them with radiation directly on the tumor during surgery, and a pec flap. These were the easier than chemo and radiation, and chemo was far worse than them all for me. Life is good. My neck is tight, numb, have limited left raising above my shoulder, limited trapezoid movement, but not much pain. I have more severe neuropathy in the legs, feet, slightly in the hands that bother me more than anything else, from chemo. A MRND and RND are basically the same, except the first preserves some structures, but the RND removes the nerve, vein and neck muscle, and lymph nodes in levels II-V. A MRND may just remove levels II-IV, sometimes. Good luck.
hey there... as a person who has had a neck dissection I can tell you... it's not that bad. You wake up with drains, there will be swelling but for the most part you are numb, your pain will be minimal. I was off pain meds day 2 - I have a high pain tolerance it seems, but because they cut the nerves in your neck you have more discomfort (not being able to feel your face from the ear down - stiffness, and your shoulder will be highly screwed for a while0. You will need physio for your arm and shoulder when all this is done. I am not sure if you will be meeting with the anaesthetist or not but makes sure your surgeon is aware of your concerns - re your tolerance to pain meds and anaesthesia. best of luck...
it will not be that bad.
Thank all of you for your responses. They are greatly appreciated. My stress level has dropped after reading them. I really just want to be on the other side of this thing so I can get back to my life. From what I have read oral cancer is a real sneaky little bugger, so many recurrences it seems. Or maybe its just that people who get the all clear don't post here anymore. Well in any event thanks again. Have a stellar day!
I thinks it's half and half - I think recurrences depend on a lot of things. The drugs used (erbitux vs cisplatin) initial treatment (surgery vs no surgery) and where they radiate, then there's your immune system, and staging and differentiation. All of it plays a role.
hugs.
Many members will return to their old lives and only return to post anniversaries. Others avoid OCF when they are well as it makes them think of their own mortality. Some other members are just too busy to spend time here, they are out living a good life. More of the ones who stick around have gone thru recurrences so that may appear that most OC patients will go thru it again. The odds actually are more will NOT have a recurrence than will.
Just think, next year this time this whole thing will be a distant memory.
Best wishes!
[quote=sunderwood1111]Thank all of you for your responses. They are greatly appreciated. My stress level has dropped after reading them. I really just want to be on the other side of this thing so I can get back to my life. From what I have read oral cancer is a real sneaky little bugger, so many recurrences it seems. Or maybe its just that people who get the all clear don't post here anymore. Well in any event thanks again. Have a stellar day! [/quote]
I know what you're talking about. I was on this forum daily for a while and from reading posts it just seemed like I should pick out my coffin and be done with it. Not that I'm saying that is ever anyone's intention. I mean lets face it. When you're first going through this you're not exactly thinking clearly and I can see now that I sought out worst case scenarios.
But once I got better I slowly stopped coming on to the forum. Partly because my oncologist said I had read a lot of misinformation and it clearly wasn't helping me as I wasn't utilizing it properly. And partly because I felt better.
As far as the neck dissection goes for me the operation side of the whole process was the easy part. I will say I have less strength in my neck but nothing dire.
My oncologist also said that the 50% survival rate is ridiculous because you can't generalize people whose only commonality is that they had similar forms of cancer. She said in my case there is very little chance, less than 1% of it returning.
Well im on the other side of the dissection, they managed to save important structures in my neck. The only one that had to go was the left jugular. I feel much better and it has only been 6 days post op. So that you for the feedback. Oh and the surgery was way easier and a lot less time consuming that the Radiation and Erbitux. Have a good day people...shawn U.
Great news Shawn, so happy to hear that things are going well. It will all get better from here!
Thank you guys, I really have to say that this site is one of the best cancer resources that I have found. And I've been looking! And the fact that you happen to be specialists in my area of cancer,
is just a bonus. again thanx.