| | Joined: Apr 2006 Posts: 794 "Above & Beyond" Member (500+ posts) |  "Above & Beyond" Member (500+ posts)
Joined: Apr 2006 Posts: 794 | Leo, I have had the exact surgery that your girlfriend is about to have. I am doing fine, and you would not be able to tell that I had had surgery.
One thing I want you to change right now, for both of your sakes, is discussing her surgery in terms of "ripping out her teeth and bones." This is demeaning to her and to the process. The surgery is a necessity........there is NO way around it....and she will possibly feel somewhat diminished in spite of all your best efforts to convince her otherwise. Your job is to treat this surgery as a medical treatment, and your job after that is to convince her that it does not change HER in any way, nor your feelings for her. She may need that reassurance.
One thing to explore with your surgeon is whether or not he would consider doing a reconstruction surgery at the time of the cancer surgery. My surgeon didn't want to do it then, feeling that he wanted to be certain that there was no recurrence, but I understand that sometimes the reconstruction is done at the time of surgery. That surgery involves a fibular free-flap graft, taking the small bone from the lower leg, along with other tissue and a blood vessel.
The very first step, right now, before surgery, is for your surgeon to refer you to his prosthodontist, so that you can get impressions made before surgery for her appliances afterward. If he hasn't mentioned this, you need to ask.
AND if he hasn't mentioned this, you are not in the right place....not with the right dr.
Where do you live? You need to take her to a CCC for a team approach, and only then will you know that you have gotten the very best advice.
And if you continue with your alternative treatments, she will lose MORE teeth and bone than if you hadn't wasted time. Nothing is going to stop this cancer in this location except removal. I was told that, fortunately, because of the nature of these tissues, this is a location where removal is generally successful, with less chance of return than in some softer tissues of the mouth. You can be thankful for that.
Now...talk nice.....get to a CCC....make sure to have a prosthodontic consultation before surgery, and accept the fact that you and she need to be a team. Your main job will be to fix her soft meals or pour her Boost or Ensure for a while, and in the meantime, make sure she knows that she is still pretty to you.
--Colleen
Colleen--T-2N0M0 SCC dx'd 12/28/05...Hemi-maxillectomy, partial palatectomy, neck dissection 1/4/06....clear margins, neg. nodes....no radiation, no chemo....Cancer-free at 4 years!
| | | | | Joined: Apr 2006 Posts: 794 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Apr 2006 Posts: 794 | Leo, I have written at some length to others facing maxillectomy and palatectomy. You can do a search for my past posts (as "August") and if you still have questions, fire away. I don't come to the forum every day, so be patient.
--Colleen
Colleen--T-2N0M0 SCC dx'd 12/28/05...Hemi-maxillectomy, partial palatectomy, neck dissection 1/4/06....clear margins, neg. nodes....no radiation, no chemo....Cancer-free at 4 years!
| | | | | Joined: Dec 2008 Posts: 1,004 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Dec 2008 Posts: 1,004 | Hi Leo,
I am 29 also and I was diagnosed at age 27. My husband has been WONDERFUL. He has supported me every step of the way and I don't know what I would have done without him. Ne never treated me any different and always keeps me laughing. Be that person for your girlfriend. Rub her back, buy her soft food and tuck her in at night. These are things my husband does for me and it makes me feel so loved and happy. Nobody else can do that for her but you.
Suzanne
***********
T1 SCC on right side of tongue
Age 31...27 when diagnosed
4 partial glossectomies
No chemo or radiation
Biopsy on 2/2/10-Clear
Surgery needed again...no later than April 2011
Loving life and just became a mother on 11/25/10
It's not what we CAN'T do..it's what we CAN do:)
| | | | | Joined: Jun 2007 Posts: 214 Gold Member (200+ posts) | | Gold Member (200+ posts)
Joined: Jun 2007 Posts: 214 | Leo,
I am a huge fan of alternative healing and herbal remedies. But NOT for cancer!! When I was diagnosed I had a hard time giving up the ideaa that I could cure this 'naturally'. In the end, I bit the bullet and had the chemo, rads, and surgery. Alternatives that I was able to use in conjunction with conventional treatments were Reiki, acupuncture, massage, yoga, and guided imagery.
Colleen gave you some very good advice, especially the part where she said make sure your girlfriend knows that she is still pretty to you!!
Teresa
Left tonsil SCC, HPV+. T2N0M0. Tonsillectomy 3-07, bilateral radiation, cisplatin 3x, Tx completed 6-06. Clear PET 4-01-2008.
Thyroidectomy 5-9-08, resulting in permanent surgically-induced hypoparathyroidism and adrenal problems. Bummer.
| | | | | Joined: Apr 2009 Posts: 5 Member | | OP Member
Joined: Apr 2009 Posts: 5 | I appreciate all the info and I have been concentrating on helping and supportting my girlfriend. I am confidient that this procedure is going to turn out good because we caught this thing as it turned. As of right now she only stands to loose a couple of teeth since it is in the upper gingiva. I have consulted some friends in the medical field and they say that everything is going to be fine.
| | | | | Joined: Apr 2009 Posts: 5 Member | | OP Member
Joined: Apr 2009 Posts: 5 | BTW she is not my girlfriend anymore. I asked her to marry me this weekend.
She is now my fiance
| | | | | Joined: May 2007 Posts: 666 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: May 2007 Posts: 666 |
Partial glossectomy (25%) anterior tongue. 4/6/07/. IMRT start @5/24/07 (3x) Erbitux start/end@ 5/24/07. IMRT wider field (30x) start 6/5/07. Weekly cisplatin (2x30mg/m2), then weekly carbo- (5x180mg/m2). End of Tx 19 July 07.
| | | | | Joined: Apr 2006 Posts: 794 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Apr 2006 Posts: 794 | Congratulations! She's a lucky girl! Holler if you need my advice later, after the surgery.
I wish you the best of luck, with the surgery, and in your life together.
XO
Colleen--T-2N0M0 SCC dx'd 12/28/05...Hemi-maxillectomy, partial palatectomy, neck dissection 1/4/06....clear margins, neg. nodes....no radiation, no chemo....Cancer-free at 4 years!
| | | | | Joined: Mar 2009 Posts: 54 Supporting Member (50+ posts) | | Supporting Member (50+ posts)
Joined: Mar 2009 Posts: 54 | Congratulations to both of you. You're definitely a "keeper" Leo.
Sweetpea
********
2/09 MEC Rt Submandibular Gland,Tumor Exc,age 68; 4/09 Rt Neck Resect, Excise Rt Lingual Nerve, 10 nodes; 1 month later- Lge Abscess Drained 5/09; 4 more cancers, final path report; 6/09 IMRTx33
| | | | | Joined: Sep 2006 Posts: 8,311 Senior Patient Advocate Patient Advocate (old timer, 2000 posts) | | Senior Patient Advocate Patient Advocate (old timer, 2000 posts)
Joined: Sep 2006 Posts: 8,311 | Yes congratulations to the both of you and I'm sure you will be the best Caregiver possible. It's not an easy job but it is an extremely important one. I credit my wife for saving my life on more than one occasion.
David
Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
| | |
| Forums23 Topics18,168 Posts196,924 Members13,103 | | Most Online458
Jan 16th, 2020 | | |
|
