| Joined: Sep 2009 Posts: 701 Likes: 1 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Sep 2009 Posts: 701 Likes: 1 | Hi, Angelia,
I am so sorry that you are having pain and I can hear the worry in your words. Waiting two more days must seem like an eternity now but hang in there. You have a lot of friends pulling for you. Keep venting.
My best to you- Anita
Anita (68) CG to husband, Clark, 79, DX SCC 11/07, T4N0Mx, PEG 1/08, RAD, post rad infection 3/08, HBOT 40 dives, ORN, Surg 11/09 mandibulectomy w/fibular graft. Plastic Surg 4/10, 12/10, 3/11, 10/11, 4/12, 10/12. All PETS clear, PEG out 1/11. 6/11 non union jaw fracture Fractured jaw w/surgery 7/14 Aspiration pneumonia 7/21, 10/22 PEG 7/21 Botox injections
| | | | Joined: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Jun 2007 Posts: 5,260 | Geez Angelia, It's time for you to get a break so you can calm down and relax. You are a very special lady and needed by not only your kids ar home but the kids you have at school. Gonna have to give uyou extra prayers and hope everything is OK.
Since posting this. UPMC, Pittsburgh, Oct 2011 until Jan. I averaged about 2 to 3 surgeries a week there. w Can't have jaw made as bone is deteroriating steaily that is left in jaw. Mersa is to blame. Feeding tube . Had trach for 4mos. Got it out April. --- Passed away 5/14/14, will be greatly missed by everyone here
| | | | Joined: May 2009 Posts: 1,412 Patient Advocate (1000+ posts) | OP Patient Advocate (1000+ posts) Joined: May 2009 Posts: 1,412 | Thanks Jim. This is so nerve racking. The not knowing is the worst. I wold just like to know so I can get on with my life. If I knew it wa snot cancer, I could leanr to deal with the pain. The right side of my tongue is rapidly changing. I have a 2CM indentation with a white area in that indentation on my tongue. The indentation is bigger then it was Thursday when i went to my ENT. UGH!
Angelia 31 at Dx. DX: 4/30/09, 10/21/09 SCC on floor of mouth, T1NOMO, T2N1M0 TX: 39 IMRT, 8 cisplatin 11/30/09 PET/CT: 11/03/09: Lymph node involvement PEG/PORT: 11/09 TX end: 02/01/10 PET Scan: 04/05/10 clear PEG Out: 06/21/10 Biopsy: 12/23/10: fibrosis HBO: 01/04/11 - ORN Baby girl born 11-30-12
| | | | Joined: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Jun 2007 Posts: 5,260 | Do you get food in the identation? When I brush and rinse after, I have enough food come out of my hidden places in my mouth that I could feed a hungry person. LOL Unless my mouth is that large. I can feel your pain thru your words. I won't even look into my mouth since the 1st time I did. It's scary isn't it.
Since posting this. UPMC, Pittsburgh, Oct 2011 until Jan. I averaged about 2 to 3 surgeries a week there. w Can't have jaw made as bone is deteroriating steaily that is left in jaw. Mersa is to blame. Feeding tube . Had trach for 4mos. Got it out April. --- Passed away 5/14/14, will be greatly missed by everyone here
| | | | Joined: Sep 2009 Posts: 126 Senior Member (100+ posts) | Senior Member (100+ posts) Joined: Sep 2009 Posts: 126 | Angelia, Vent away..I know there is not much we can say, but we are praying that you will know something soon and get some relief.
Sharon
Sharon, 57; Hard Palate; T1, High Grade, DX 6-12-09, Surgery, maxillectomy 7-14-09, 33 RT (9-2-09 to 10-19-09); Prothesis (obturator). None smoker, non drinker.
| | | | Joined: May 2009 Posts: 1,412 Patient Advocate (1000+ posts) | OP Patient Advocate (1000+ posts) Joined: May 2009 Posts: 1,412 | I am so scared. I do not want to do this again, not at Christmas time. It is not fair. I know they have not said the words, but I know my body and I know what is changing on my tongue daily, is not good. The pain is increasing by the day. I hope that my MO can get something done for me.
Angelia 31 at Dx. DX: 4/30/09, 10/21/09 SCC on floor of mouth, T1NOMO, T2N1M0 TX: 39 IMRT, 8 cisplatin 11/30/09 PET/CT: 11/03/09: Lymph node involvement PEG/PORT: 11/09 TX end: 02/01/10 PET Scan: 04/05/10 clear PEG Out: 06/21/10 Biopsy: 12/23/10: fibrosis HBO: 01/04/11 - ORN Baby girl born 11-30-12
| | | | Joined: Jan 2009 Posts: 1,844 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Jan 2009 Posts: 1,844 | Angelia,
Be calm my dear. It is normal to worry, but do not let worry turn to panic, which is what I'm reading in your post. Breath...in and then out and know that you haven't heard the words yet and no matter how well you "know" your body, even you can't tell it's cancer without a biopsy.
I know it's tough to hear, but really get it out of your head and enjoy the season with your loved ones. None of us are guaranteed tomorrow, so treasuring the time you have with those you love while you can is really what life's about. Let tomorrow and the next day or the next bring what it brings, but live and love and enjoy what you can. Life's too short to let worry and hysteria steal the joy out of the time you have right now.
Peace be with you friend.
Eric
Young Frack, SCC T4N2M0, Cisplatin,35+ rads,ND, RT Mandiblectomy w fibular free flap, facial paralysis, "He who has a "why" to live can bear with almost any "how"." -Nietzche "WARNING" PG-13 due to Sarcasm & WAY too much attitude, interact at your own risk.
| | | | Joined: Jun 2007 Posts: 10,507 Likes: 8 Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) | Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) Joined: Jun 2007 Posts: 10,507 Likes: 8 | Angelia, nobody (not even you) knows what the test result will be. Listen to what Eric wrote, it makes alot of sense. The last time I was diagnosed with Stage IV oral cancer, I couldnt believe it. I had done a 25 mile bike ride the day before I was diagnosed. It was the best I had felt in 3 years. So please stop panicing, relax and take it day by day. Stop letting cancer rule your life. You are wasting precious time and energy over something that you have no control over. You are in my prayers. ChristineSCC 6/15/07 L chk & by L molar both Stag I, age44 2x cispltn-35 IMRT end 9/27/07 -65 lbs in 2 mo, no caregvr Clear PET 1/08 4/4/08 recur L chk Stag I surg 4/16/08 clr marg 215 HBO dives 3/09 teeth out, trismus 7/2/09 recur, Stg IV 8/24/09 trach, ND, mandiblctmy 3wks medicly inducd coma 2 mo xtended hospital stay, ICU & burn unit PICC line IV antibx 8 mo 10/4/10, 2/14/11 reconst surg OC 3x in 3 years very happy to be alive | | | | Joined: Feb 2007 Posts: 790 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Feb 2007 Posts: 790 | Hi Angelia,
I am hoping that a lot of what you are experiencing is the tongue just healing and the tissue sloughing off. I lost almost of of my tongue but others who have more tongue tissue from what I've seem here seem to go through a longer period of having things change with thier tonge from the assalt of surgery and radiation. It really does a number on the body- especially the radiation. I often get little nicks and sore spots from being too bold and eating foods that are crunchier than I should- and or eating them too fast. Its hard to adjust to this new life.
I know how difficult it is to endure constant uncertainly. It is just awful and nothing can help until the doctors say everything is OK. I understand completely.
You hang in there and try and relax. I still use warm salt water rinses and also half hyrogen peroxide and water to take care of any irritations I get and it seems to resolve most things that used to freak me out. Maybe that could help. I find that it feels good and keeps my mouth cleaner and my gums healthier too which is hard to do without a tongue.
You are in my thoughts and prayers. Hopeing you start feeling better physically and less worried about things too.
Big hug to you
KATE
I wish there were
Tongue Cancer T2 N0 M0 / Total Glossectomy Due to Location of Tumor
Finished all treatments May 25 2007 Surviving!!!
| | | | Joined: Jun 2009 Posts: 440 Platinum Member (300+ posts) | Platinum Member (300+ posts) Joined: Jun 2009 Posts: 440 | Oh Angelia, I wish I could just give you a hug! Try to be positive girl, don't let the worry consume you. I'll be praying for you and your results.
Dx 3/27/09 @ 28 years old with High Grade MEC T4N2M0 Elizabeth, 33, mother of 3 girls (4,7, &8yrs old) 3 rds of chemo(Carbo/Taxol) Rt Mandibulectomy, rt fibular flap,& rt ND with trach, picc,& g-tube. 30 rds of rads with weekly cisplatin SCANS ALL CLEAR! OCF Regional Coordinator of San Antonio Walk
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