Hi All,

Just found this site. Wish I had found it 9 months ago. In a nutshell, late Dec 2011 - diagnosed BOT (3.3 cm tumor) stage 4a (right & left lymph nodes involved), Jan 2012 - started Chemo (Cisplatin) and IMRT radiation treatments, Mar 2012 - treatment finished (3 chemo sessions, 35 radiation sessions), late Apr 2012 - first upper endoscopy with esophageal dilation, late May 2012 - second esophageal dilation, 6 June 2012 Post treatment PET scan, 7 June 2012 declared CURED, no cancer sites remain in my body, Aug 2012 - rehab still ongoing, swallowing is better, everything still tastes "wrong". My question is, what's next, Am I really cured? Can anybody who's past 5 years survival answer this?

Hey Jt,
I am sorry I can't answer your questions. When I read about your cancer It is alot like my husbands. He has had 2 chemos already and has 14 days of radiation left. It is getting real bad and I am so scared that it can get even worse. He won't eat and he barely drinks and he is getting ugly. He never smoked or chewed and isn't a big drinker. How do you know if your cancer is from HPV? I just have so many questions, I wish you the best. I would like to ask you more questions if you don't mind? Thanks.

Hi leelee,

I'm so sorry about your husband. A biopsy is required to definitively tell if the tumor is HPV related. I would be happy to answer (to the best of my ability) any questions you may have. Be advised that many of the answers will be for your eyes only and may not be pleasant. If I knew at the beginning of treatment what I know now, I don't know if I would have gone through it all with an unknowable result.

Hi leelee,
I'm glad that you have found this forum as I did a little to late, but still get alot of answers and ideas to help me through these difficult times. I do not have 5 years only a little over 1 year. Everyone is different and respond to chemo and radiation differently. I am still feeling the effects of the TX that I received. I know there are others on the forums who will be glad to help once they have read your message. Hang in there!

Bot cancer has a good survival rate if it's HPV related - the virus reonds well to treatment, good luck!

What's next is to enjoy each and every moment to the fullest!! Appreciate what you have and what you are which is Cancer Free! Live, Love, Laugh and Learn. My son is almost 6 years cancer-free and enjoying life. No one knows what comes next - tomorrow you might win the lottery or you might get hit by a bus. Give those you love a big hug and kiss. JMHO.

JT,

See my Signature Brother.

Look as far as I'm concerned you will be fine BUT your recovery can take every bit of 2 years so just be patient. I recommend that you try and consume 3000 cals each and every day as your body needs all the "recovery fuel" it can get. I did that and I didn't gain 1 pound my entire first year of recovery.

Trust me all of us ask "what's next" after this ordeal. For me this is what happened. My saliva and taste (which I think go hand in hand) slowly improved. I saw my first noticeable improvement at 4 months post Tx (PT); another at 5; the biggest at 14 months and the last at 24 months. I estimate both recovered at appx 90% only because you never can remember what 100% was. I was very weak PT but within the first year I was back to riding my bike with the "big boys" just as before Tx. I had a very positive attitude throughout but couldn't have survived without my wife. Some go through a period of depression PT and it usually comes from trying to answer the "what's next" question. Appx 4 months PT I had a hearing test and I found out that Cis had permanently damaged my high frequency hearing in both ears. Nothing I could do but eventually I'll need aids. Also about that time my thyroid crapped out from the rad and I take a small pill once a day. No big deal. Other than that life goes on for me. If you stay around you will soon learn that we fortunately had the baby form of this cancer so in a sense you should count your blessings that you didn't have to go through what so many have to with oral cancer.

The worst is over. It should be all up hill from here.

Welcome to OCF, Jay Tee. Its always nice to have another survivor join the forum. Recovery can take a full 2 years. Its a long but very worthwhile road. Not everyone will return to exactly how they were before their cancer diagnosis but for most they are close enough to lead a good life. Many have some lingering after effects that we just deal with. Sure is better to be alive and complain about the little annoyances than the alternative.

Wishing you well with your continued recovery!


PS... To leelee, to find out about HPV status, the tissue needs to be tested specifically for HPV. Ask the doc who did your biopsy if it was tested for HPV. Many times it is not checked. A biopsy is done to detect cancer. While its being tested for cancer they can also check for HPV.

Leelee,

Welcome to the site. Your question needs to be the start of it's own thread. That way posters can focus on one topic. If you need help PM me.

JayTee
I'm assuming from your profile as a retired military you are used to hearing it like it is.
Posting [quote]Be advised that many of the answers will be for your eyes only and may not be pleasant. If I knew at the beginning of treatment what I know now, I don't know if I would have gone through it all with an unknowable result.[/quote] in response to another brand new poster who is a scared wife/caregiver of a fellow cancer patient strikes me as wrong on many levels.
Only your implicit confession of just how badly the uncertainty concerning recurrence has affected you prevents me from saying more than I can't imagine an experience that is so awful or unpleasant that it has not already been shared on this forum. Plus advice to a scared new caregiver is better on an open forum so others can chime in with different views and attitudes. I know you are trying to be helpful but I don't think this would be helpful to her.
Heads up, nobody knows if their TX will prevent the cancer from coming back. If having an "unknowable result" were a rational criteria for not suffering through this treatment, then not a single person would ever have radiation or chemotherapy. You are not helping yourself with this line of non-reasoning. Hey, trust me, I've been where you are at, not only once, but twice. It's hard, but doable.
Keep the Faith

Charm

LeeLee

Since you were able to hit reply to JayTee' post, let's spell out how you can post your own thread about your husband and get answers from people who have not only survived but thrived with the exact same cancer as your husband plus comments from other caregivers like yourself.
At the top of this page on the left hand side there is a blue
Introduce yourself", just click on it and you will be on the Introduce yourself forum home page. At the top right, underneath the blue lines, there will be a button saying:
New Topic. Just click on that and a box will pop up for your post, just like the one when you hit reply to JayTee.

As a caregiver, you will find other caregivers understand your issues plus the patients will also chime in with their first hand experience and advice on problems and issues facing your husband. Welcome to OCF. There are no questions you cannot ask here in the open forum that will upset us and don't worry if they sound basic or silly. We've thought them ourselves at some point whether we asked them or not
Charm

David,

Thank you so much. This is exactly the type of information I was looking for. And you are right about our significant others. Without her I know my outcome would not be as positive as it is. To all you CG's out there, you are more important than you know.

I've renewed my gym membership and will begin this week getting ready for this winter's ski season. I see my RO tomorrow and have a number of questions on recurrence and is there anything I can do other than be as healthy as possible to keep close by sites (tonsils, etc) cancer free.

Once again, your answers were spot on for what I needed to hear.

Thank you,

Hi JT,
My husband Kevin had the same dx and has the same hearing loss and taste/dry mouth issues David spoke of. It is getting better by the month.
I don't think any of us has a week (maybe day) that we don't wonder if it will come back. It's not as bad now as it used to be though. My hope is that as we get farther away from it I will think less and less of recurrence. Kevin doesn't talk much about things, but I know he thinks about it too.
We have a PET and scope in October. I'm already nervous about it! We have been through the statistics thing, but really, like others have said, we are all different. David is an inspiration and Kevin and I have decided we will follow in his footsteps!! LOL
Blessings,
Kathy

Jay Tee,

My advice is don't bother with asking your doc about your recurrence. It won't matter as you either will or won't. OK so your human. In that case ask away but the only thing you can be told is that statistically studies have shown that HPV + SCC responds better to the Tx that you had (vs HPV- SCC) and therefore one can draw the conclusion that your chances of recurrence are therefore less than HPV- SCC.

My other advice is for you to forget about your bout with cancer and get on with the rest of your life.

Hi Jay Tee

I am only 2 months ahead of you and had a very similar dx. My experience of recovery has been that it is happening at a snails pace. But it is happening. I have been back at work part time for the last 2 months which has really helped me to feel more normal again, this has been psychologically very important. My taste has improved a lot in the last month. but swallowing and dry mouth are still a challenge. Sounds like you have had a tougher time than me with the swallowing though. What was the indication that you needed oesophageal dilatations so soon after treatment?

In terms of the future I fully endorse David's comment above. Now is the time to get on with living. I have been lucky enough to have been given a second chance at living (without the successful treatment we have both received we would not be in a good place right now!) and I have had a chance to reassess the important things in life. Before my dx I was in a bit of a rut, fed up with my job, overweight and unfit. Through my treatment I was bowled over by the support I got from all sorts of people, family and friends as well as work colleagues and the medical team giving me the treatment. As a result I now value my life, I am looking good, heading towards being fitter and eating a much healthier diet. I was feeling very happy with life earlier today and wondering if I am a bit in denial of the seriousness of the situation. But I don't think so. If I have the bad luck to get a recurrence of this horrible cancer in the next few months or years, I will be really pissed off with myself if I have wasted the good health I have at the moment worrying. I hope that makes sense!

Wishing you all the best with your recovery.
Sally.

Hi Leelee

I also had a similar dx and I was where your husband is now, over Xmas and New Year. My mouth was so sore I couldn't eat or drink and I was very miserable. I didn't want to see anyone and my poor partner was in your position having to deal with me without being able to put it right for me. All I can say is hang on in there. It does get better, though it will get a bit worse first. I found that even water tasted horrible and I couldn't tolerate hot or cold. I found that the best thing to sip at was a small bit of ginger root infused in hot water. To keep the temperature right I used a thermos cup and topped it up with hot water periodically to keep the temperature right.

Do please ask questions. Everyone reacts differently to both the chemo and the radiation, but there will be people here who can answer questions on on all aspects.

The treatment is worth it.
Sally

I was diagnosed in July and just started tx. When I first realized I had cancer I was despondent. I began to plan for the end, totaling up life insurance to see if my family would be OK, and sorts of things. I believed I was dying, and had many morbid thoughts. Everything I did I kept thinking "this could be the last time I do this", whether it was seeing a great sunset or getting a hug from my daughter or eating the ribs I love so much. Then it hit me: this was nothing new! For any of us, every single thing we do could end up being the last time we do it, as none of us ever know when our particular time on earth will end.

When I realized that my attitude changed, and I went back to simply enjoying all those good things. You will be in my prayers, and based on what others here say, I know that we can get through the tough times and come out on the other side--it's just a matter of time and perseverance. Once on the other side of all this, as for how long we will be here, none of us can say, so enjoy it all. Until then, try to find something good even on the bad days (even if it is only the memory of a past good day, or the hope instilled by others here of the promise of a future good day to come).

[quote=saxicola] If I have the bad luck to get a recurrence of this horrible cancer in the next few months or years, I will be really pissed off with myself if I have wasted the good health I have at the moment worrying.[/quote]

Sally,
What you said makes perfect sense, and you have given me a great positive image with which to move forward; whether it be 2 years or 20 years, or more.

Thank you,