I am the CG to my wife who was diagnosed in Jan 05 with SCC left later tongue T2N1M0. This was followed with surgery and chemoradiation ending in July 05. She suffered terribly through the treatments and for about 9 months afterwords from side effects (lot of a mucus, nausa, vomiting). She was not able to eat for 8 months due to stricture of the esophagus and had to have 7 dilations of the esophagus.

She was just beginning to feel better and we had almost resumed our normal life until she begin to complain of pain in her tongue in the last 6 weeks.

She had a CT scan the first week of November and there was no sign of cancer. She saw her ENT about two weeks ago regarding the pain. He said the the tongue was irritated but no sign of cancer.

The pain got worse and she felt a bump under tongue at the original tumor sight this week. We saw her RO yesterday who felt the growrth under the tongue a said that it was hard tissue and he thinks it is a cause for concern.

He asked us to make an appointment with the ENT next week since the CCC is closed for the Thanksgiving holiday. We were scheduled to leave on December 1 on vacation but the RO said not wait and take care of his ASAP.

We are both devastated. We were very optimistic that the cancer would not recur since we were so close to our two year mark.
This has been the worst Thanksgiving of my life as I was depressed all day long. My wife told me that she is going to die if I do not snap out of it because she cannot handle me feeling that way. I just can't seam to find the strength after ou first battle with cancer. This is such a @#^%& disease.

I would like to hear from other forum members who have experienced a recurrence and what treatments were down and how they are doing now and I would appreciate any input or advice.

Vin,

Sorry to hear what you and your wife are going through. I'll hope and pray that when you get it checked out next week that it comes back negative.

Hi, Vin, Amy here. Wish you had not gotten that news. I know how hard you and your wife have worked to get her feeling well again. There are treatments for recurrences. {More surgery and chemo to name 2. If it does turn out to be cancer, you will just have to find that strength that got you through the first time to help her through again.

Vin, I know it has been a real struggle for your wife to get back to normal--and she's on about the same timetable I am (I was also diagnosed in Jan 05) so I was really sad to read this news. You still don't know yet that it is cancer--all you've been told is it's something they want to check out further so I think you should try to try to brace for the worst but not assume it's a definite yet.

Beyond that, I don't have any wise advice since I know I'd be devastated and very worried in your shoes as well. Try to be good to each other, though, in the middle of all this. Your depression over the news can't be helpful to your wife right now, who must be very very scared. I know you hae the strength in you to be her caretaker again should she need it--my thoughts are with you. Please come back and let us know whatever the results are!

Nelie

Hi Vin,

I, too, hope that the news you receive is that this issue is indeed not cancer.

My husband was diagnosed with a recurrence of SCC of the tonsil just this past September. He would have hit the five-year mark soon as the original diagnosis was rendered in May 2002.

He had neck dissection surgery in October and is now having a portion of his neck reiradiated and more Cisplatin. He commented to me and to some other radiation patients that he was glad he'd been through this before as now he knows what to expect, how he needs to think, and how thankful he needs to be for all that can be done for him. He's amazing.

I, on the other hand, am near tears constantly and afraid I'll lose the love of my life. I have to work very, very hard to stay positive. It helps to simply take it one day at a time.

Please let us know what's happening with you and your wife. You are welcome to post here or to email me privately if you wish.

Best,

Loretta

Dear Vin,
I am so sorry your wife may be facing this again. But this is not necessarily the end of the world. One of the good things about having had this disease before is that it is usually caught early the second time and while we can not normally get radiation a second time, there is still surgery and/or chemo.

I am hoping this is not a reoccurence but if it is, you guys need to be strong. Keep fighting. Some of us do make it back after the second go round. You can too.

Take care,
Eileen

Stoj,

Thank you for your reply and your prayers. We are also parying and hoping for the best.

Best wishes to you also and I hope you are doing well.

Vin

Hi Amy,

Good to hear from you. I continue to read your caregiver journal religiously. You and John are amazing. I wish I had half the strength and courage that you have. I hope that John is doing better with the fever. I was happy to read that he was able to go to walmart and the gardening work with the leaf blower.

I am doing better has I am slowly getting ovet to the schock of the bad news. If it turns out to be a recurrence, we have some amazing doctors at the University of Southern California Cancer Center. So we feel that we are in very good hands.

I have the battle scars from our first round of fighting cancer and I am now a veteran. I am ready for the second fight.

I am thankful for this site and the help and support I received from you and other forum members.

I send many prayers for you and John. You are my idol.

Vin,

I truly hope that things will turn out OK.

I had first round 2004 and had surgery to remove 1/4 tip of Tongue. Then in 2005 about a year from surgery, found lump in neck.

This time had Right neck dissection, removed part neck muscle, Jugular, and lymph gland. Chemo and Radiation. Finished Jan. 20th 2006

I think about Oct. I went in again and had them check tongue. I too felt a small area that would hurt. They checked it and was not cancer but a fungi infection.

I worry about my husband and myself. I try not to show how awful I feel. This cancer has been hard on him and his emotions.
I am sure just like you.

I like reading the survivor stories. It makes me think I may have a chance. Tell your wife I am thinking of her and I pray for Both of you that the words you hear are NO CANCER.

Take care,
Diane

Hi Nelie.

Thank you for your reply as I appreciate it. I hope you are doing well.

I took my wife to see our RO last Wednesday because she had been complaining about the pain and the bump she was now feeling on her tongue at the original tumor spot. The RO said that it was a cause for concern and sent someone from his office to get our ENT/surgen who is in the next door building so that the ENT could also look ay this. Unfortunately, due to the Thanksgiving holiday the ENT was already gone since it was late in the day.

We are going to see our ENT/surgen this week and we hope for good news else we are going to tak care of this immediately. Both our ENT/surgeon and his collegue surgeon at our CCC are internationally known for their surgical abilities and the treatment of head and neck cancers so we have the best team of doctors taking care of us and we feel good about that.

I took me a couple days to get over the intial shock of the possible bad news but I regained my composure and I intent to be a "rock" for my wife and to take care of her to the best of my abilities as I have already done with our previous bought with cancer.

She is concerned and worried as I am but she is hoping for the best. Actualy she handled this alot better that I did. I told her that I am here for her no matter what and she knows that.

It is amazing that she had a CT scan the first week of November and it was all clear. She saw the ENT that same week who looked at and felt the tongue area where the original tumor was and he did not find anything wrong although he said that the pain was due to the tongue being inflamed. The bump on the tongue showed up last week almost overnight. Anyway it is still possible that this could be nothing serious so we are hopeful.

Diane,

Thank you for your post and sharing your experience as it gives me hope that this could also be a fungi infection. I totally relate with the way your husband feels. This cancer has also be hard for me and I feel that my nerves are shot.

When my wife was first diagnosed I hit the Internet and I began to read all kinds of stuff which scared the stuff out of me. Then I began reading survivors stories only and that brough a lot of comfort to me and lifted my spirits. When I get down I still read survivors stories and that makes me feel better.

I hope that your fight cancer is finally over and I send my best wishes and prayers to you and your husband.

Vin;
In addition to the Fungi infection Diane mentioned the RO could have felt some scar tissue from your wife's surgery since you said the pain's located in the same area as before, especially since your ENT didn't mention the "bump".
Hopefully all of that coupled with the clear CT will lend a positive outcome.
You're in my prayers.

Thank you to everyone who responded. My wife and I appreciate you sharing your experinces with us, your good wished and your prayers.

We saw our ENT yesterday. He looked at the suspect spot on the tongue and then he felt it with his fingers. He said that this suspect area was there at our last visit in the first week of November and it had not gotten any bigger.

He said that it may be due to the radiationt therapy since there is discoloration but he proceeded to say that since the pain in the tongue is getting worse it may also be a tumor. To be sure, he scheduled us for a biopsy and if it turns out to be a cancerous growth that of course it needs to be removed. The ENT did not seem overly concerned and we left his office feeling a little better.

Since we had plans to travel overseas, the ENT said that it was OK for us to go and have the biopsy after we return from our trip.

Dear Vin,

If you read "CA has reoccurred", you will see that sometimes things are turning for the bad and sometimes they don't. I am the CG of David and I too was and still is completely chattered by what we are going through, by what is happeneing to David ansd consequently to us. We have 3 children aged, 7, 11 and 13 so despair is really around the corner...actually it is right in our face!!!

Enjoy your holidays to the max but please, please be strong for your wife because SHE is the one who needs you NOW. She is the one who is going through the worst. It doesn't mean that it is easier for us as CG but we have our physical health. As CG we too have to go through the drama but NOW SHE needs you to be strong, to be there for her and if you have a family to look after, SHE needs to know she can count on you so she can put ALL her energy to get better. YOU MUST be the "rock" as you said earlier.

You must find a well where you will be able to reach for extra energy and strengh; prayers? god? friends? family? sports? medication? what ever works for you!!! For me, it is my children, my friends (some family members are included in this circle) work and sports. There is no good or bad answer. It is what makes you regain your hope, your courage and your energy!!! Did I mentionned, Pinot Noir from Hawkes Bay .... outloud???

heaps of love to you and your wife

Vin- Don't know if you are on vacation but have been thinking about you and your wife.Hope you are enjoying every minute. I was so pleased to hear that the dilations worked. My husband Gil is finally able to eat food in small amounts and it takes a long time. He ate fish this weekend. Huge moment! He will continue to have his esopaghus dilated weekly until they can't. Small steps.
My fingers are crossed that you will have good news regarding your wife's health. I think of reoccurenceevery day and then take a deep gulp and enjoy every moment I have with him.

Vin,

I dont want to sound like a broken record here but, It aint cancer until they say it is.
Might be an infection. I had them on my tounge up to 9 months post treatment.

You are in my prayers.

Peace and Love
Robert Hamilton