Well, I received some bad news yesterday. After being a near 5 year survivor, I learned that the beast is back. This time, base of tongue, near the epiglottis. I see the ENT again tomorrow and we are talking about possible robotic surgery in Cleveland. I will know more then. Sorry to join this new club.

Oh no!!!!! I am so sorry!!!! Please keep us posted on your options.

Best wishes!

Thank you Christine. I certainly will.

I responded to your other post... this really sucks I am so sorry... You'll get through this. HUGS...

Know how it feels after such a long time. I'm back, it's back after four years. Life changes yet again.

Best of luck with the action plan and the surgery itself.

I am so sorry that you joined the recurrence club. I became a member nearly 5 years after my first diagnoses so I understand how you feel.

Best of luck. Please keep us posted. HUGS!

So sorry that you are part of the club. I do remember that when my husband was first diagnosed in 2012, the MO told us that as long as the cancer does not go below the collar, the doctors are confident that they can get it. I hope this will mean some comfort to you.

Wow. That totally sucks!! So now we dig deep and do whatever we can to get rid of the beast - AGAIN.

Mine came back within 3 years and while it is rare for it to come back after almost 5 years, it is not unheard of. That is why I NEVER say I am cured or cancer free. Despite the negative effect of "the jinx", the fact is that we all need to remain vigilant with oral cancer regardless of how long ago our first dx was.

I am now about 9 1/2 years since the end of treatment for the 1st cancer, and 5 years post end of treatment for the 2nd one.

You will get through this. Tell them to hit you with the best shot - you never want to see this devil again!! We are walking with path with you. Keep us informed.

Hugs

Donna

Thanks, everybody, I had an MRI yesterday, and have a PET scan scheduled for tomorrow. Then, next Friday I have a consultation with a doctor in Cleveland who is a specialist in surgeries for head and neck cancers. We will decide if I am a good candidate for robotic surgery. Since it would be less invasive than regular surgery, we are hoping that is an option.

So sorry you are a part of the club. Keep us posted.

Wishing you the best in your treatment plan. So sorry that you have to deal with this AGAIN. Prayers, healthy thoughts and good vibes coming your way.

Best,
Anita

Update: I have exploratory surgery scheduled at University Hospitals (Case Western Reserve) for March 10. This will determine if I am even a candidate for the robotic surgery. Because of the radiation damage to my mouth, I can't open it that wide, so he won't know if he can use the robotic instruments until he actually tries to get in there. If the robotic is not an option, they will try the more "standard" surgery, which will involve opening up my jaw. My doctor is Dr. Rod Rezaee, who is the Director of Head and Neck Reconstructive Surgery at the Seidman Cancer Center at University Hospitals.

I hope everything goes smoothly and as planned with your exploratory procedure. Its wise to always have a plan B which Im happy to see you already have in place. You can never be too prepared or plan too much.

Good luck!!!!

So glad you have a few answers... fingers crossed that you can have the robotic surgery,.... stretch!!! ;o) before then. Cracking the jaw will not be fun! particularly after rads... very much hoping for option one. hugs.

Well that is good news - a treatment plan.
I think we all feel slightly better about things when we have a plan in place.
Not long now. Take care.
Tammy

Well, option one is not an option, I am afraid. The condition of my mouth and the invasiveness of the tumor make that impossible. Now I have two options. One is to do nothing and essentially give up. The other involves very invasive surgery which would also involve some major lifestyle changes. I would have a permanent feeding tube, and a permanent trache. I am not sure that I would ever be able to eat or speak normally again. I know that there are others on here who have faced similar challenges. I would like to know how you coped and are coping with them. I am not ready to totally give up yet. I have a new granddaughter due in April, and I would like to be part of her life if possible.

Im so sorry the options are not what was expected! Please dont give up!!!! I almost did but the members of this forum helped me to see the big picture.... you cant quit without even trying. I have life long issues that I deal with on a daily basis which make some days harder than others. The important thing is Im still here, despite any lifestyle changes. What helps me to keep going is I help others. I refuse to focus on my own problems and sit around dwelling on any deficiencies I now have. I was never one to feel sorry for myself, instead I look on the bright side of things. Much of this is about the person you are inside..... that does not change no matter what else changes. As we get older, looks will fade and we all have our ailments but one thing will remain constant --- who you are inside. There isnt anyone who could change who you are and the good person you have inside of you. Not sure if this helped or not but it works for me so maybe it will for you too.

Hang in there!




PS.... My first grandbaby will be arriving next month. We will both be grandmothers together in only a few more weeks

Thanks, Christine! You are an inspiration to all of us. I am in a handbell choir at church and the director called me this afternoon. I told her that I might be back to bell choir eventually, since I don't need to speak to play the handbells...I just ring! She said that they would keep my bell warm for me. I had been planning to stay home from my Kiwanis meeting tomorrow night, but I have rethought that. I think that I will keep going to the meetings at least until they schedule my surgery. Thanks again for your words of wisdom.

P.S. Congrats on being a new grandmother. Grandchildren are the best! Little Madeline Rose will join her 3-year-old brother Alexander on April 19.

Well, I too am sorry this isn't quite what you were expecting.
When we got Kris's treatment plan we never in our wildest dreams were expecting that. I even contemplated killing us both off by driving into a tree on the 3 hour drive home. Of course I quickly dismissed that. Children to live for . Future Grandbabies to live for.
So we just got on with it. Has it been challenging? Definitely. But you know, there is still good life to be had. Kris does have a good and worthwhile life. He keeps very busy. Yes social contact is a lot more restricted and going out for dinner takes on a whole new meaning. But he accompanies me and enjoys the social interaction . We are planning a holiday in Vietnam again this year. So yes, life will still be worth living. You just make adjustments.
If you have any specific questions I can help with, just ask.
Tammy

I am over on my end the the states praying for you. I'm really sorry to hear what you will need to go through. Prayers for the best outcomes and the least challenging symptoms when it's all said and done. Hang in there.

I have not had some of the challenges you MIGHT be facing, but I can speak (pun intended) to not being able to speak well. I have about 1/8th of my tongue and my speech is somewhere between that of a hearing impaired person and someone who has had a stroke. In spite of this, I continue to try to speak regularly. I think you will find that there are some who will understand you fairly easily and those who cannot. I very much appreciate the extra efforts others make to understand. You get through. When your doctors are telling you all of the side effects, they are required to tell you about them all, regardless of which will probably apply to you.

Good luck, and hugs

Donna

Hun Do whatever you can to get through this. Do not let people tell you what you can or cannot do, do not let them limit you that way. Take what they say to be the worst possible scenario then move past that to achieve the maximum quality of life you can. Dr.s give you "Scary" (they told my father in law 6 months likely with the peg - after he had his esophagus removed and replaced with his stomach. His surgery was a month yesterday he's taking everything by mouth, only flushing his peg. If he maintains his weight it's coming out next week.) they always give you worst case scenarios do what you can to surpass their expectations - not for them - for you! HUGS.

Dear Zengalib, if your energy level allows it, there is no reason why you should wait to go back to your belling group.. My husband is a potter and he goes and works in his studio (it is really just our garage) everyday unless he has a medical appointment. He told me that it "fed his soul." Maybe belling can do the same for you. You also get to see your friends there.

The only reason I haven't gone back to bell choir is that they are working on music for Easter, and hopefully I will be in the hospital or recovering from surgery by then. I hope to rejoin them in the fall, though. I have been going to my Friday morning coffee group, and my Kiwanis meetings. So, I haven't dropped out of everything.

Hugs again...

That's good. It is important to keep busy and to keep those social contacts up.
Tammy

I am so deeply sorry that you have had to deal with this monster popping up again. Never in my life would I think that I would find so many good, caring friends in the face of adversity and tragedy.

You are brave and I applaud you for keeping up with your social routine as you face your upcoming surgery. I fell apart both times when I was diagnosed and could not function at all. We all have our own way of dealing with things.

I hope that you have a great support system in place. Congratulations on the immanent arrival of your sweet granddaughter. Just think of how it will feel to hold her in your arms for the first time. That warm, tiny bundle of joy; a new life to live. Think of the wonderful smell of her tiny little head; one of the sweetest smells in the world.

Hang on to anything that keeps you going and makes you want to fight for your life. I think it's great that you already have plans to return to your bell choir after you recover some.

It's so incredibly hard, in so many ways. Even though I am a two-time survivor, I feel like I got off lucky compared to many on these forums.

I wish you all the luck one could have in this world as you endure this surgery and recovery. I wish I could say something more profound or comforting. I wish I could wave a magic wand and make everything go away. I wish that for all of us.

xoxo,
Kerri

I am so fortunate that I have such a great support group. Not only my family and friends, but my church family and my community. I was the town librarian until I retired in 2011, and the community rallied around me 5 years ago at my first diagnosis. It was overwhelming. When I retired, there was an open house for me at the library, and even my congresswoman came. I live in a wonderful town with truly amazing people.

Sorry to read that you are having a recurrence.
I have been keeping up to date both here and on FB!
It is great that you do have a wonderful support group around you.
Sending good vibes and positive thoughts as you go through surgery and recovery!
Gabriele

Got a date for surgery. April 9. Not sure if it will be a total or partial laryngectomy or a total or partial glossectomy, but there will be some skin grafting, a feeding tube, and a trach. It will be a long haul, but doable.

ZengaLib, I'm so sorry you're facing this after all you've been through. I hope it's a relief to have a date and a plan. You have so much to look forward to -- your new grandbaby, bell choir, friends and many good books -- You will get through this to enjoy all that and more. Come here and vent when the going gets rough, keep taking care of yourself, and you will be through this before you know it.

(((HUGS)))

Lynn

I was glad to read that you feel the surgery is "doable." It speaks to your fighting spirit. Way to go!

Okay I'm hoping and praying for a partial on all accounts. As for the trache hopefully it will be temporary. April 9 is okay... but if you are up for it ask them to put you on a waiting list in case they have a cancellation sooner, and get your preops done early to accommodate this possibility. Hugs and blessings to you.

I don't have to do pre-ops because I just did them before I had the exploratory surgery. I just need to have some bloodwork done, and that will be done next week. I also have to meet with one of my doctor's partners next week. I don't really think that it can be moved up, since it is an all day surgery with multiple docs. Right now I am looking at rehab facilities for after surgery.

Thanks for everybody's good vibes and good thoughts.

Hugs and feel better... hopefully they do what they do quickly get it all with minimal impact - and spring you. ;o) hugs my dear.

Update: I had the 11 hour surgery on April 9, was in the hospital for a week, then was transferred to a skilled nursing facility for rehab. I had a detour and had to return to the hospital for 5 days for a MRSA infection. I was in the rehab center until July 11, and have been home since then. I have a feeding tube and a trach. I see a visiting nurse now once a week and an SLP twice a week. I don't think that I will be ever able to eat normally, but I still have my vocal chords (or "vocal folds" as my SLP says), and I am able to say some short phrases and some words. I have a portable suction machine and a machine with moist air. I also have a hospital bed, so I can keep my head raised. The next step will be trying to use a Passy-Muir valve to help with my speech. I am trying to speak as much as I can, without having to write everything down. I really like my speech guy. It has been really hard (and still is) but I am hanging in there, even though I get tired.

Thanks for posting your update. Its great to see your sense of determination at your recovery. Sounds like you have a long road ahead. I too used a possey muir valve trach. For me, it worked very well. I was lucky and only had my trach for 2 months.

There are some programs that my friend uses on her ipad where she types and it will talk for her. Im not sure what its called but it helps her communicate as she has no voice at all after having her voice box removed.

Keep up the good work and best wishes with your continued recovery.

iSpeech is a old one used a lot but IOS 5 and higher has it built in. Go to Settings, General, Accessibility, Speak Selection, On.va bit cheesier, but doable.

I'm glad to hear the update, too. You've done really well and I hope that continues.

Kris uses Speakit in his IPad, when he needs too.
Pleased to hear you are doing okay.

So glad to hear such an encouraging update! Keep up your fighting spirit! I have the IOS 5 on my iPhone and and it does very well with the speech function. It even has a selection for speaking rate that you can slow down (or speed up) to make words easier to understand, in addition to all the different language voices.

I have a couple of apps on my ipad for speaking, but it is just as easy to write it down. Sometimes the volume on the iPad isn't has loud as I would like. I am trying to use my voice as much as I can.

One more thing...they got all of my cancer with my surgery, but one of my surgeons kind of wanted me to do 30 bouts of radiation, too...just in case. I decided not to do this. I already had 38 rads in 2009, plus 3 cisplatin. The surgeon admitted that the rads would slow down the healing from surgery, so I decided against it. I am going to have a baseline PET scan in November, so we will see what that shows.

Hi, zengalib
I am very glad to hear from you! You have certainly had a tough six months, but are carrying on with your usual grace and courage. It's wonderful that the speech therapy is coming along, and that you like your therapist. The internet and all the new technologies are fine things in there own ways - but to speak with one's own voice is a blessing.
Very best wishes - and keep posting.
Maria

So glad you are doing well. (Or better - I'm surprised you didn't go with the rads though I hear you on the healing, hugs

Zengalib-I am glad to hear that you are doing well. I also hope you are enjoying your grandchildren! Babies=happiness.

I decided not to have the radiation, because I already had the rads 5 years ago. They really kicked my butt. This most recent surgery has made my original partial glossectomy and selective neck dissection look like a walk in the park. I didn't feel I could handle the radiation at this time, too. I did the whole bit in 2009 and the cancer still came back. I made the decision I did because I felt it was best for me. I am pushing 70, and have had a good life, so I am comfortable with this decision. I am enjoying my beautiful grandchildren, and was glad to be able to live to see them born.

Kris was not offered any radiation after his surgery. I did ask. We were told that radiation had not worked for Kris, so why have more.
Knowing what I now know about increased effects of more radiation I'm kinda glad .
Tammy

Makes total sense Zen. I hear you on the rads. And it would definitely be a long haul and probably have a big impact on quality of life. fingers crossed it's gone for goood!

Hope all finds you well. Your decision sounds best for you, lets hope the Beast is gone and you have a very long life!!!Keep up the good fight. Semper-Fi Bob

It's always comforting to know when we have made the right decisions for ourselves. Keeping all good thoughts for you.