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#38346 03-26-2005 02:11 AM
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In two weeks, I go in for my pre-op visit with the surgeon for the neck dissection. He's by far the most difficult and hard to take on my cancer "team" as he doesn't like to give many answers and thinks many of my questions are ridiculous. Thank goodness for this forum where I can at least hunt for other answers and soothe my worried soul.

I'm in agreement that I probably do need the neck dissection. Afterall, it will give me answers via the biopsy of the tumor site and the nodes as to exactly where I stand in this fight. Thus far, the original tumor was melted away during radiation. Guess this is positive news.

So far, all I know is that the procedure itself will take around four hours and I'll be in the hospital for at least a good five days. I am working myself around mentally to accepting this. I wish I knew what to expect though. Many of you have said that this neck dissection thing is nothing to worry about... "piece of cake" but I have to tell you, I've had so much pain and gloom on my plate lately it's hard to be positive.

My surgeon also wanted me to mull over what I want if he is to find cancer cells on my voice box. This did not put me in a positive spin either, but on the drive home, I guess I rationalized that if I'm in surgery and on the table IF they find cancer, I'd like it cut out of me then and there. It just terrifies me to awake in the hospital without a voice. The last couple of weeks, I've been without a voice and it's been miserable panicking everytime the phone rings. I cannot imagine being voiceless and having it be a permanent thing. I'm hoping they put all the "what ifs" out there in the next appointment so I know exactly what I might lose in the process. I do hope the lab isn't sloppy.

Anyway, I sort of need a boost of "don't worry" and some sort of what to expect for the surgery. My voice is slowly coming back, so I'm hoping that the surgery isn't too painful and doesn't regress me into being voiceless once again.

I realize that once I step up to the plate and endure this operation, I might well be done with the hard stuff. It would be nice to know what to expect so I can plan my five days in the hospital.

I'm worried about pain management as the last time I was in there, I had major problems with the morphine. It made me paranoid and didn't relieve the pain very well.

Any reassurances you all can give me to get me through this will be appreciated. I feel like such a baby sometimes, but this has become my alternative place for knowledge.

In the meantime, I'm going to try to buck myself up to be positive and cancer free.

Jen

#38347 03-26-2005 02:23 AM
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My husbands surgeon had planned a neck dissection and we opted for a second opinion at a major medical center where the top dogs there say they go with chemo and radiation.. no dissection for the past year of studies... have you had a second opinion???? We highly suggest the med centers where they have the latest... What about a PET scan which shows everywhere the cancer has gone including all lymph nodes

#38348 03-26-2005 03:17 AM
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Jen,

I had the neck dissection before radiation, so I can't comment on what it would be like in reverse order. My surgery was about 5 hours in the OR, 24 hours in ICU and then another 4 days in the hospital before going home. I spent a couple of weeks recuperating at home and then started back to work part-time and was feeling pretty good by then.

My surgeon (who I guess was much more empathetic than yours) also gave me the standard list of caveats and what-ifs. While all the possible downside risks sounded fairly daunting, I ended up with only a slight reduction in neck motion over the long term.

Like many others here, I've concluded that surgery was the least difficult part of the overall cancer treatment -- hope it will be the same for you.

Cathy


Tongue SCC (T2M0N0), poorly differentiated, diagnosed 3/89, partial glossectomy and neck dissection 4/89, radiation from early June to late August 1989
#38349 03-26-2005 03:17 AM
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I will be having this procedure in a few weeks, so cannot help you with what it will be like. I agree with brendaf that you may want to see another surgeon. The doctor should be able/willing to fully explain the procedure to you, and answer any questions you have- they are not ridiculous if they concern you. I would advise having this proccudure done in a facility that specializes in cancer, and with a physician who relates to you positively, and provides satisfactory answers to your questions. Good luck.

#38350 03-26-2005 09:11 AM
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Jen,

You don't say if you are getting treated at a comprehensive cancer center of if you've gotten a second opinion.

The National Cancer Institute (http://cis.nci.nih.gov/fact/1_2.htm) lists the University of Colorado Cancer Center, 1665 North Ursula Street, Aurora, CO (tel: 800-473-2288) as a designated cancer center that uses a multidisciplinary approach. I would suggest getting a second opinion at this type of insitution. Good luck with your treatment. - Sheldon


Dx 1/29/04, SCC, T2N0M0
Tx 2/12/04 Surgery, 4/15/04 66 Gy. radiation (36 sessions)
Dx 3/15/2016, SCC, pT1NX
Tx 3/29/16 Surgery
#38351 03-26-2005 09:36 AM
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Hi Jen,
I know you don't like the surgeon but do you trust him?? That's the question right now. If you do then I guess the warm fuzzies we all need can come from the rest of your team. I didn't care for my radiation onc but he was the best so that's who I wanted. Ended up I had more contact with his associate who I ended up wanting to take home to one of my older girls.
In your position I would want the neck disection. I have read to much about machines not catching small cancers in the lymphnodes and I would want someone to take them out and check them, literally. I don't remember having any pain with my disection and others say it was not a difficult part of treatment.
You can do it Jen. We're all pulling for you.
Minnie


SCC Left Mandible. Jaw replaced with bone from leg. Neck disection, 37 radiation treatments. Recurrence 8-28-07, stage 2, tongue. One third of tongue removed 10-4-07. 5-23-08 chemo started for tumor behind swallowing passage, Our good friend and much loved OCF member Minnie has been lost to the disease (RIP 10-29-08). We will all miss her greatly.
#38352 03-26-2005 02:48 PM
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Hi Jen,
Where was your original tumor that 'has now melted'? I ask because of the voice box question.
I haven't the time to make a lengthy post now, but I and many others have posted on this subject often. Search the archives. It is the easier half of the treatments. Are they oing one side or both? Will he have to remove muscle? Make certain he doesn't remove your saliva glands unless absolutely necessary. I'm a little surprised they are scheduling this so quickly. I would have thought they would have given a lttle more time for skin to heal. Operating on irradiated tissue is more difficult than if you had had the neck dissection first. Ask about using Biafine to help heal before and after surgery. Iive had two of these ops and needed very little morphine after I woke up and only for a day, but every person and surgery is different

Take care,
Eileen


----------------------
Aug 1997 unknown primary, Stage III
mets to 1 lymph node in neck; rt ND, 36 XRT rad
Aug 2001 tiny tumor on larynx, Stage I total laryngectomy; left ND
June 5, 2010 dx early stage breast cancer
June 9, 2011 SCC 1.5 cm hypo pharynx, 70% P-16 positive, no mets, Stage I
#38353 03-26-2005 11:04 PM
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So far everything sounds normal. My surgeon is raved about by my other doctors, but his manner towards me puts me on edge. He's very cocksure. Yes, I am being treated a major cancer facility. He's the last step since I'm healing up after radiation. The whole voice box bit is probably because the tumor was located originally on my surpaglottis. I'm crossing my fingers that I am officially cancer free and all I need done is this last step to confirm it.

This is why I'm concerned about the pain. I really don't want to be away from my family for five days in the hospital in total pain. There won't be anybody to advocate for me, since we live an hour and a half away and it's best my husband take care of my children. Yes, Ssax, the cancer center you listed is where I'm being treated at.

I know it seems like I'm a whiner. I made it through radiation and chemo. I need to buck up my courage, think positive and make it through this. You all have gone through far more than I have. I'm going to cross my fingers and hope that all goes according to plan and I don't end up in too much pain or permanent loss here.

Afterall, I'm almost done with this cancer stuff. Since my entire year has been wrapped around it, I'm due for a break where I'm on the mend and not worrying about cancer.

Cross your fingers for me, folks. Here's hoping that I'm all clear and the surgery goes smoothly.

Jen

#38354 03-27-2005 04:19 AM
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Jen
You CAN do this, the pain from your neck will be less than you expect, the pain of being away from your family will be harder to bear, I hope that the problem with your voice turns out not to be serious.
Sunshine... love and hugs
Helen


SCC Base of tongue, (TISN0M0) laser surgery, 10/01 and 05/03 no clear margins. Radial free flap graft to tonsil pillar, partial glossectomy, left neck dissection 08/04
#38355 03-27-2005 04:19 AM
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Jen, we are all different, but just to give you an alternative experience, I had my neck dissection after rad/chemo. It was about 6 weeks after treatment ended, only because they tried it at 4 weeks and found "suspicious" tissue samples, which they take before getting on to the surgery and the pathologist couldn't get a test result while I was on the table. So they brought me out of it and told me I had to get it done again after they got the biopsy results. I don't remember, but my wife told me I cried in the recovery room because I told her I couldn't do it again. Of course, that was just the drugs. Turned out there was no cancer in the samples taken, so we rescheduled the surgery and then cancelled it the day of the surgery because the doctor threw his back out and couldn't operate. Rescheduled it again and finally had it done on 5/5/04.

The good part of the deal was I was never checked into the hospital. I was put into recovery and kept there overnight and they released me to go home the next morning, Saturday. I started work from home the following Monday and during the next week had my two drain tubes removed and continued working.

The surgery was no big deal. It was less than the rad, less than the tonsilectomy, by far, and only a little worse than chemo which for me was the same as not having had chemo. I still can't guarantee they ever gave me chemo because I had no trouble with it (had some problems with the first antinausia meds, but only once and when changed, all was OK). So you shouldn't worry too much about the surgery. By the way, mine was supposed to take 1 1/2 to 2 hours and ended up taking 3 1/2 due to the doctor scrapping tissue off of the nerves and carotid artery. All told, they took 35 nodules in 5 different nodes and an additional 10 oz. (approx) of tissue. Mostly muscle.

Long term effects has been a stiffening of the tissue on the surgery side and a soreness, loss of strength in the shoulder. Physical therapy helped and then normal activity has more or less resumed with some strength and function reduction. So you should be OK.

I didn't have any voice box discussions. Perhaps because my primary was in the tonsil. Like you, though, I lost speaking ability for a bit after rad. Not too long, and it wasn't totally gone, but it was limited, and I saved it for work as much as possible.

Try some other pain meds, like oxycotin, to try to avoid morphine if it bothers you. Doctors should be able to advise you on that. Keep a positive attitude as you are in the last inning here. From here on out it is just going to get better.


Regards, Kirk Georgia
Stage IV, T1N2aM0, right tonsil primary, Tonsilectomy 11/03, 35 rad/3cisplatin chemo, right neck dissection 1/04 - 5/04.
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