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they say morbid and radical surgery

splockard
Posts: 2
Joined: Jul 2013

This is a first post for me  - I have squamous cell  - cheek , nose, lip with nerve involvement . Their primary course of action would remove my nose (half missing already), my cheek bone because the CA is following nerve, hopefully not my eye ( "see when we get in there"), and my upper lip. This followed by radiation.

I have seen 2 surgeons and tumor board and they are sending me to surgeon who has done more of these " complicated" surgeries.  

I obviously dread a maxillectomy and at 63 I am considering not having surgery and just getting radiation and chemo.

What is the "quality of life" following this kind of surgery and how much time is invested in recovery and attempts to do some reconstruction ( apparently limited /mostly prosthetic)?

I would appreciate any feedback  - this "plan " is crashing down on me and a need to make surgery decsion very soon.   Thank you very much . Steve

KTeacher
Posts: 928
Joined: Jan 2011

I am glad that you found us, sorry that we have to meet this way.  You are dealing with quite a lot, and I know in a very short time.  Perineural invasion is ugly, no other way to say it.  That cancer bugger travels the nerves and does more damage.  Hopefully you are at a large, well know cancer center.  It is amazing how we heal, yes there are difficulties but life is good.  I started out in Aug 2010.  Lump on right upper lip.  I inch of lip removed, 50 stitches.  Radiation only.  SCC, perineural involvement, spindle cell varient.  One year later, Aug. 2011, lump on left side of neck (not supposed to cross from right upper lip to left neck--cancer doesn't follow any rules).  Neck dissection followed by more radiation.  Last Sept I notice double vision, got worse, after many scans and a biopsy, 'c' went up my nerve in my cheek and into orbital nerve.  I needed to have my eye removed Nov. 2012.  Not easy but I am here to see grandchildren.  I am able to eat.  There is an amazing woman on the Facebook site for Head and neck survivors--PHRANNIE, I need your help!!!  Phrannie can tell you how to find this group, I am sure that she will drop in soon.  I also go to a site, Lost Eye.   It has been very helpful to my recovery and adaptation.  Prosthesis are amazing these days.  Get the cancer.  Life is good.  You will adjust to a new normal.  Do you have family and friends that can help?  Read the Superthread for information about treatment and side effects.  Feel free to pm me.  I am leaving for vacation for a week and will try to check in but can't guarantee I'll be online between Sunday and for a week.  I recently read about someone with the nose situation, I will have to find out what site I was on.  Good luck to you, prayers go out for you.

phrannie51's picture
phrannie51
Posts: 3690
Joined: Mar 2012

My cancer was all on the "inside" so I didn't have to face what you are facing.  I did however look up maxillectomy to get a better feel for exactly what's ahead of you.  What have the Dr.'s said about skipping the surgery and just going with rads and chemo?  Is that really an option when it comes to survival?  I've seen the prosthetic noses, and they look pretty darn good....a cheek bone can be replaced....and we've all seen people with prosthetic eyes...and they look pretty good, too (if it comes to that when they "get there"). 

In my travels to see exactly what a maxillectomy was, I did bump into a forum....the last entry was 15 days ago, which isn't too bad for cancer forums.  My heart goes out to you on this decision ahead of you....not an easy one for sure.  This is the link to that forum I saw in case you want to check it out.  This forum is great, too.....very supportive with lots of knowledgeable people on it.

http://forum.maxillectomy.com/

KT....I didn't see your post till I'd finished mine....the HNC Survivors group at Facebook is H & N Warriors, and the link is: 

https://www.facebook.com/#!/groups/293022777446795/ 

They too are ultra supportive, and you may find someone there who has gone through the same thing....lots and lots of people there.

p

KTeacher
Posts: 928
Joined: Jan 2011

Phrannie, I knew you would come through for me.  I looked and that was the exact post that I was thinking about.  I check out the rare and skin cancer boards, they are not as active as this one. 

 

Steve,  On the FB site, Michelle Bloomer has been very open about her recovery, she had quite a lot of jaw, cheek bone removed.  I am sure that she will be very helpful.  (She is on vacation right now.  I believe that she is on the east coast, by the time stamp on your post, I think that you are on the east coast also.  I am on the left coast, I go to Stanford for my surgeries and had my chemo and radiation locally.

If you go to the Lost Eye site I am Pirate Grandma.  I knew for about a week before surgery that I would have my eye removed and this site helped with the monovision issues that I was going to face.

CherieLW's picture
CherieLW
Posts: 425
Joined: May 2013

Steve,

So sorry to hear about that... I'm here supporting my dad (who is a Steve also) so unfortunately I do not know much about any cancer or treatments, just what I have heard on here.  Whatever you chose, I hope you are content with as my dad is 66 and his wasn't nearly invasive.  Although, treatment was still rough.  Praying for you!  Hope you are able to get some good feedback on here from someone who may have better info.

Tim6003's picture
Tim6003
Posts: 1495
Joined: Nov 2011

I'm sorry I have no feedback to give on such issues ....sounds like you have gotten some good stuff already, but I wanted to chime in and say as a fellow warrior I offered a prayer you get good results and healing as well as wise doctors!

Best,

Tim

patricke's picture
patricke
Posts: 463
Joined: Aug 2006

Hey Steve,

If you live anywhere close to NYC, or can get there, I strongly suggest that, given your situation, that you first look up MARK URKEN, MD on line, and then, get an evaluation from him if at all possible, he does amazing reconstruction.  He has done some remarkable work on me, and I am scheduled to be back in his surgery suite in the not so distant future.

PATRICK

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