Welcome everyone. The past couple of days i have been reading posts on this website and wanted to thank everyone in advance for thier input.
My girlfriend who is 29 years old was just diagnosed with Squamos Cell Carcinoma of the up gingiva. I am tired and frustrated at the answer that i get in that surgery is the only option in her case and they would have to cut out part of teeth, bones and gums just to get this cancer out.
I am trying some holistic approaches while we get all of our Scans done.
Has anyone had any success with alterantive treatments to just ripping out her teeth and bones?
Also what do i need to prepare myself with in this case for me to get ready. Emotionally and physically.
The best thing you can do is be there for her at all times. She is going to need someone she can depend on to help her and to take her to appointments. You have to keep her mind in the direction that she is going to beat this stuff. A good care giver is one thing she will need for sure. As for alternative meds, forget them. You wqaant the best for her and not someones pipe dreams or snake oils. I lost all of my teeth , had radiation and chemo after losing them. Then I had to have radiation seed implants put into my tongue and be in isolation a few days surrounded by lead and no visitors. I remember none of this and I guess should be glad. I was just told I am cancer free now and that is the best news ever. Stick with that girl if you love her and do everything she needs. Just make sure she gets treated at a Comprehensive Cancer Center. Good luck to her and make her the lite of your life.
What she needs is tried and true approved medical approaches and that never will include internet cures.
We all know the frustration that comes with being told we have cancer and then hit with the harsh realities of treatment but believe me if you want to see her turn 30 you better stop feeding her emotions with unproven quackery and endorse proven medical science. You can always encourage her to get second "qualified" opinions at a Comprehensive Cancer Center. Here's a list for your convenience:
http://www.oralcancerfoundation.org/resources/cancer_centers.htmDon't mean to be so abrupt but this is a very aggressive cancer and I have seen far to many people die an inhumane death from it.
Welcome to OCF. Alternative treatments will not cure cancer. Get her to a comprehensive cancer center immediately so she has a chance to beat this. Oral cancer is very fast moving. Surgery isnt easy either is chemo or radiation but its sure better than dying.
It will be tough but she can get a denture that will make it look liek nothing happened. It will be along provess it won't be easy but surgury radiation and chemo are the only trie dand true methods of kicking this disease.
Dear New Friends
I aprreciate in advance all the help that i am getting in this forum. We have been moving very fast on this matter to try to minimize the time that she will have this cancer in her. We are getting ready to schedule surgery today and I know that we have a long road ahead of us. In the meantime i am trying to detox her and at least get her spirits up. As far a denture is concerned I think that she will be fine.
I am trying now to research Possible implants in the future for her. I hope that she can get them to restore her natural biting function. Any thoughts?
Leo
You will be more than tired and frustrated if you go "holistic" instead of realistic. You will be guilty and remorseful that your girlfriend died because the doctors gave you accurate answers instead of wishful thinking,
that said, go to a CCC, perhaps they can put together an agressive combo of radiation and chemotherapy instead of the surgery. I went that route the first two years but had to face the facts and get surgery when it came back,
Nothing wrong with being healthy or holistic: I did yoga, pilates, no sugar, etc etc, it just does not cure cancer,
Leo
for yourself, stockpile PATIENCE. Go with your girlfriend to every doctor appointment and treatment, Take notes independently and ask questions for her if she is not up to it,
Being a caregiver is harder than being a patient in my mind as I see what my wife suffers.
If not body has mentioned it yet, discuss getting a PEG (feeding tube) before the surgery if there is going to be any issue of swallowing or eating, It will really help her out,Take care of yourself during this time as she will really need you,
finally, have HOPE
Charm
Leo,
I'm happy to see that you have abandoned the alternative treatment route. All that would have done was wasted valuable time.
You're getting way ahead of yourself starting to research implants at this point. There will be plenty of time for that later.
Right now you should concentrate on learning all you can about being a caregiver and how you can support your girlfriend as she goes through her treatmant.
Jerry
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
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
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.
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
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.
BTW she is not my girlfriend anymore. I asked her to marry me this weekend.
She is now my fiance
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
Congratulations to both of you. You're definitely a "keeper" Leo.
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.
How wonderful!!! Congratulations!!!!!
I'm not sure about implants. I'd ask the surgeon and radiation oncologist. They will know best.
I did lots of alternative treatments to combat the effects of my cancer treatments. That is where holistic medicine can compliment. There may be a alernative health center connected to the hospital where she's being teated. I went to the one conencted to my CCC and it was a wonderful resource. It alos made me feel comforted to know that I wasn't taking anything or doing anything that interfered with my traditional tried and true cancer treatment methods. The biggest thing is antioxidents. They don
t want you to take any supliments when you are getting radiation. It interferes with it.
Best of luck to you and wishing your special lady a full and healthy recovery from this!
KATE
Hi, Leo -
Before I had my surgery, the first thing on my list was getting implants; after my surgery, it was the last thing on my list. I forgot that being alive trumps how I looked. Of course, when I got the diagnosis, my thinking got turned upside-down, no matter how logical I thought I was.
I'm one of the fortunate ones, as my cancer also was caught early, and my surgery was not too involved. I have no external deformity, but my journey through cancer has helped me prioritize what is really important. I don't have enough bone for implants, but I haven't had reconstructive surgery, nor do I plan to have it. My son's friend had OC 7 years ago. He's a public speaker, & his thoughts, prior to surgery, were on reconstructive surgery. He says he's doing fine. My daughter-in-law's friend had OC 12 years ago, just before she got her PHd. She had reconstructive surgery because her surgery was more extensive. We are all comfortable with our decisions.
You have a great attidtude that will help you deal with whatever comes your your way.
Good luck, and congratulations, again!
Marlene
sorry ... I meant to say my son's friend is doing fine without reconstructive surgery.
Marlene
son's friend had OC 7 years ago. He's a public speaker, & his thoughts, prior to surgery, were on reconstructive surgery. He says he's doing fine.
I just have to say congrats to both of you. Asking her to marry you is the heigth of love. I wish you at least 50 yrs of haooiness and may the love be there every second along the way. Mine had asked me to marry her 3 times and I just said wait which I should have held her tighter and said lets do. Needless to say she is gone . Hindsight sure isn't what I needed with OC working me over. Again and congrats and a long life to you as Mr and Mrs
Can I ask how they found the cancer in the gums?
SABW,
Not sure if this answers your question but the only way to confirm this cancer is through a biopsy.