| | Joined: Aug 2007 Posts: 1,301 "OCF Down Under" Patient Advocate (1000+ posts) |  "OCF Down Under" Patient Advocate (1000+ posts)
Joined: Aug 2007 Posts: 1,301 | I am so sorry that the news was not good Liza.
Words you will see here often are �one step at a time� and �breathe�.
Now you need to see what the tests on Friday show.
You are already getting good advice from people who have been through this and are here to support you now.
As per my PM if you want I am happy to chat. As time goes by you need to come here often and lean on your OCF family.
Gabriele
History Leukoplakia bx 8/2006 SCC floor mouth T3N0M0- Verrucous Carcinoma.
14 hour 0p SCC-Right ND/excision/marginal mandibulectomy 9/2006, 4 teeth removed, flap from wrist, trach-ng 6 days- no chemo/rad.
6 ops and debulking (flap/tongue join) + bx's 2006-2012.
bx Jan 2012 Hyperkeratosis-Epithelial Dysplasia
24cm GIST tumour removed 8/2013. Indefinite Oral Chemo.
1/31/16 passed away peacefully surrounded by family
| | | | | Joined: Nov 2009 Posts: 493 Platinum Member (300+ posts) | | Platinum Member (300+ posts)
Joined: Nov 2009 Posts: 493 | You will get through this, Liza, because that's what you have to do. Everyone here will support you all along the way. So glad you found us, even though we wisht that you didn't need us.
Female, nonsmoker, 70, diag. 5/09 after tongue biopsy: stage IV. Left hemi-gloss. and left selec. neck disec. 30 lymph nodes removed May 20. Over 7 weeks daily rads. with three chemo. PEG removed 12/4/09 Am eating mostly soft foods. Back to work 11/09 Retired 4/1/11. 7 clear scans! Port out 9/11. 2/13. It's back: base of tongue, very invasive
surgery involving lifestyle changes. 2/14: Now speaking w/Passey-Muir valve. Considering a swallow study. Grateful to be alive.
| | | | | Joined: Jun 2009 Posts: 875 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Jun 2009 Posts: 875 | Hi Liza:
I am sorry the results of your biopsy weren't good, but with the radiation and chemo, you stand a good chance of survival. Recurrances are so bad, but they can be beat too. So, do what you have to do and get cancer free. I, along with the other Forum members, will be sending up big prayers for you. YOU CAN DO IT!
julieann
Julieann Nov 2007 SCC on right tonsil following tonsillectomy. Was smoker, QUIT. (Stage IV T2 N2b) 7 weeks radiation one day/wk chemo (carboplatin and 5-FU). Allergic to Taxol; PEG in, lost 30 lbs. TX completed January 2008. PEG out mid- 2008. PET/CT 1/17/2011;2/3/12 NEGATIVE for cancer  | | | | | Joined: Dec 2003 Posts: 528 "OCF Down Under" "Above & Beyond" Member (500+ posts) | | "OCF Down Under" "Above & Beyond" Member (500+ posts)
Joined: Dec 2003 Posts: 528 | I am very sorry to hear your news, Liza. All I can say is that your treatment will help and hopefully cure.
I did not find radiation easy although I had great help from docs, technicians etc. However there is no doubt that it cured my cancer which had spread to the lymph system. I am nearly 8 years from end of treatment.
As you now know, OCF members are here for you as you begin your new treatment journey. Thinking of you, love from Helen
RHTonsil SCC Stage IV tx completed May 03
| | | | | Joined: Jan 2011 Posts: 63 "OCF Down Under" Supporting Member (50+ posts) | | OP "OCF Down Under" Supporting Member (50+ posts)
Joined: Jan 2011 Posts: 63 | Thanks everyone...it's a battle trying to stay focused. I am not ashamed to say that I am petrified of the treatment and the outcome. How do you guys stay so positive? I would love to hear about the one's who have had recurrences and are living proof that survival is possible. I keep thinking about my family and what they are going through...and I feel so sad. My chest feel so heavy and has this awful feeling 24/7..I am trying to deep breathe, pray, meditate but my mind sure has it own plans and is not allowing me to have any peace.I really need to dig deep for the courageand peace that I am lacking at this point. Any advice would be appreciated.
Liza
SCC of the Buccal Mucosa (R cheek)- T1N0M0.10 hour Surgery on 27/9/10 involving resection with freeflap from radial forearm..clear margins. Neck dissection..negative nodes.Trachy, NGT, no rad or chemo needed at the time. Neck lump positive for SCC..again! MND 14/2/11. Waiting to have chemo and rads
| | | | | Joined: Mar 2008 Posts: 3,082 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Mar 2008 Posts: 3,082 | Liza So sorry to hear the bad news about the cancer coming back. My wife and I were in total shock when mine came back and even my ENT surgeon teared up as she described the salvage surgery and exceeding the maximum radiation. Words can't describe how it feels to be told the cancer is back and feeling sad and depressed is normal. In fact you would have to be some psychotic Pollyanna (just my outrageous opinion) or a fracking Saint to accept this right off the bat. I neither am nor was either one, but luckily we don't have to have immediate peace. Surprisingly enough, LIFE will bring you there although nowhere as fast or straight as you would like. Sometimes I consider quitting posting on OCF because I feel like if I was a newbie and read about just how badly this has all turned out for me despite being HPV+ and having a top notch CCC, I'd worry. But then I see a post from someone who has been told this terrible terrible news. The fear that each and every OCF patient and caregiver has deep in their hearts: the cancer is back again; has turned into bitter reality. But only someone who has survived and thrived can reassure that it can be done. I did it, you will do. Trust me, there is life after cancer coming back. It's a good life, not the optimal one. It's not a paradise, but it's not hell either. It's just life. You do have the courage already inside you, but just like the Cowardly Lion character in the Wizard of Oz, you don't realize it yet. I can't eat, I can't drink, my speech is impaired, yet I would not trade my life for anyone else's. Why ?: because you can't trade your life. The key to moving on is to stay focused on the NOW not fantasy. Do the TX, the surgery, the radiation, the chemo. Then recover. Give yourself permission to truly mourn the life that is no longer yours, but open up to the life that you will have. Read the Book of Job in the Bible. Read "Why Bad things happen to good people". Or for a more pratical approach, read the American Cancer Society pages When your Cancer comes back Last but not least, EAT, DRINK and BE MERRY now. Heck I still put wine down my feeding tube. It's just the Catholic in me but God does have a plan for us all, we just can't see it clearly here (although that plan does include wine, see the first miracle: the wedding at Cana) Seriously, when this is all over, I'll bet you can eat and drink but just have some scars and speech therapy. Is it easy to accept this? NO. But does it get better with time. YES Best Wishes Charm
65 yr Old Frack
Stage IV BOT T3N2M0 HPV 16+
2007:72GY IMRT(40) 8 ERBITUX No PEG
2008:CANCER BACK Salvage Surgery
25GY-CyberKnife(5) 3 Carboplatin
Apaghia /G button
2012: CANCER BACK -left tonsilar fossa
40GY-CyberKnife(5) 3 Carboplatin
Passed away 4-29-13
| | | | | Joined: Jun 2009 Posts: 875 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Jun 2009 Posts: 875 | Liza:
Isn't CHARM great? No one could have said it any better than he. We are so blessed to have him on the Forum. He told it like it was/is. He and others have done it, and you can too. So, never, ever, ever give up. We are all here for you.
Big hug from julieann
Julieann Nov 2007 SCC on right tonsil following tonsillectomy. Was smoker, QUIT. (Stage IV T2 N2b) 7 weeks radiation one day/wk chemo (carboplatin and 5-FU). Allergic to Taxol; PEG in, lost 30 lbs. TX completed January 2008. PEG out mid- 2008. PET/CT 1/17/2011;2/3/12 NEGATIVE for cancer | | | | | Joined: Jan 2009 Posts: 1,844 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Jan 2009 Posts: 1,844 | I for one Charm am so glad that you continue to post on these forums. You are and have been an example for me and I hope to be able to meet someday my friend.
Liza, for what you are going through you've found the BEST place for support and comfort. I'm glad you are here and I hope you let the love and hope we have take hold in your heart.
keep your chin up
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: 6 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: 6 | Liza, just look at how many friends you have in your corner already. When you see others who have been thru recurrences already are here encouraging you, it should make it a little bit easier. Nobody wants to go thru this once let alone twice, but it can be done. Im so glad you are able to see the compassion that makes OCF so great.
Charm, this is one of your all time best posts!
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: Jan 2011 Posts: 63 "OCF Down Under" Supporting Member (50+ posts) | | OP "OCF Down Under" Supporting Member (50+ posts)
Joined: Jan 2011 Posts: 63 | Charm, you are another person on this site that has inspired me. I am going to read your post as well as all the others to give me the courage I need. Sometimes, I feel like a caged animal. I guess it will take a few days for my brain to process all this. I feel so unlucky to get a reccurence after 4 months. I thought I was healing so well :-(
It's so strange that ever since I went to have my ultrasound, I feel so many things not right around my throat and neck area..almost like its psychological. Wonder if anyone else experienced these feelings?
Thank you once again to everyone for their prayers, advice and positive thoughts. I am very blessed to have met you all. God bless xx
Liza
SCC of the Buccal Mucosa (R cheek)- T1N0M0.10 hour Surgery on 27/9/10 involving resection with freeflap from radial forearm..clear margins. Neck dissection..negative nodes.Trachy, NGT, no rad or chemo needed at the time. Neck lump positive for SCC..again! MND 14/2/11. Waiting to have chemo and rads
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