Hello all,

I am feeling extremely anxious and scared about my moms appointment with her ENT tommorrow. When I discussed the scar tissue versus tumor issue with him last week he seemed to think that what the dentist was seeing was scar tissue but he wants to see her tommorrow anyway just to check it out. I just really hate the feeling that I get before she goes for the appointment. I can remember sitting in the waiting room for the doctor so we could get some biopsy results and I swear I was practically climbing the walls going crazy. I wish I was a little less of a worry wart because this stuff just kills me. I'm sure all the stress I've had for the last year because of this awful diesese has taken years off my life. I just wish there was an easier way for me to cope and that I handled stuff like this a little better.

Thanks for letting me vent.....

Dani

Dani,

There is nothing wrong with asking the doctor for something to take the edge off. This is a very traumatic experience for you and we all know how special our mothers are. It has been about 5 years ago my mother was diagnosed with ovarian cancer. She had it beat at one point and then three months later was diagnosed terminal. The cancer had totally taken over her digestive tract. Every day was a blessing and her 4 weeks went on for 9 months. Your mother is very blessed to have someone who loves her so much by her side through it all. I can not imaging going through this disease alone.

I am hoping your appointment brings good news and praying for you to get a good night's sleep. We all go through a tough night before our exams, too.

Ed

Hi Danielle,
I had scar tissue and slow healing for a long time in the back of my throat. The radiation oncologist kept using terms like "she wasn't completely happy yet" and it near drove me crazy! This was all based on palpation exams. The scar tissue showed up on the MRI's as well and the reading radiologist didn't like it either. It turned out to be nothing BUT scar tissue and it eventually resolved itself (the area completely healed and is a nice healthy pink) and the radiation oncologist "is happy now", in fact moving me to 6 month appointments (I still see the head & neck surgeon every 3 months).

Like Ed said, there's nothing wrong with anti-anxiety meds. My wife and I both took them. We are just now dealing with her feelings and stress from the past year.

Ed,

You are such sweetheart. Your posts are so thoughtful and caring.

Gary,

You are so awesome!

My mom just got out of the doctors office and he is amazed with her progress he says she looks better than anybody he has seen go through what she went through and amazingly her speech is better now after the radiation than before she started (because of her tongue being 2/3 smaller than it used to be). He sees nothing out of the ordinary and thinks the dentist is just referring to scar tissue on her tiny little tongue. He will not do another PET scan until she is six months post radiation due to the scar tissue etc and says its not really worth it because everything will light up on the scan if he does one now. So I am happy and relieved. If I get anymore scares though I will seriously think about taking something for my anxiety. I'm here at work practically climbing the walls while I waited for her appointment to be over and for the phone call from my sister. But its good news and I couldn't be happier.

Thanks for getting me through the tough times!

Dani

I have a whitish patch and a spot that looks like a divot (you golfers will know that that is) on my tongue. My dentist was also being overly cautious (after all they didn't know what that 6x3 cm tumor was poking up off my tonsil intially so now they're erring to the conservative) which is ok by me. I asked my head&neck guy about it and he simply said it was damage from the radiation and nothing to worry about.

We LIKE good news!

Hi Danielle,
Please tell your mom how happy I am for her and for you. I always have one of my older daughters with me at my appointments and I am very aware of how anxious they get, even though they try hard to hide it. The look of relief on their faces when the doc says all looks good is priceless.
Take care,
Minnie

Dani,

I am overjoyed at the GREAT news! You fret as much as you need to and we can all high five when news like this comes back. Your mother is blessed to have so much love. If it helps, ALL of us and our families are very nervous as the next test comes up and as we wait for the doctor. I catch myself peeking at his expression before he says anything but he isn't a good poker player. He had the radiologist prepare a written report between the 9:30 PET scan and the 1:30 appointment because he didn't want us to wait too long. His ear-to-ear grin was all we needed to see!

Ed

Hello Danielle,

Its me Stephanie..The one with the mom with similar cancer and the same doctor. I have not been to this web site in a while and came to see how you and everyone was doing. I am sorry to hear you had a scare but happy to hear your mom is doing well. I know exactly how you feel about the anxiety. I would love to talk to you. I am so scared myself right now. My mother is finishing her third week of radiation and she can barely speak and eat. She has blisters on her tongue and her mouth hurts. Danielle, please tell me how long she will be like this. I know your mother started her treatment long before my mom and you probably can give me good advice. Also, if anyone else out here can offer some advice as to what to do to help her with pain, etc. I would love to hear. I took her today to radiation and it was hard on me. She still has three weeks left and I scared at the thought of her getting much worse. Will she be able to eat at all? Did your mom go on a feeding tube? THis is MUCH worse than I ever expected it to be! Danielle and everyone in here, I am here for you all. You all have been such a great support for me and it means a lot to me that you all care so much. I just need some help right now with my anxiety as well. It is interfering with my work and emotions. All I do is worry and think about my mom and she has been crying and not dealing well with this. Can anyone offer me a good idea of when she should be better. I want to plan a vacation for her but would like a good idea about when she would be better.

Danielle, I am happy to hear your mother is speaking and eating better. I am so happy. Pleas send her my best wishes. Also, if you ever need to talk, I am here. You have my phone and email.

My mom's face is pretty swollen now and I just am so worried. Is there food or anything you all would suggest to help her with the dry mouth and pain?

Thank you again.

God Bless
Stephanie

Stephanie,
I know how hard it is to watch someone you love go through so much suffering. I was caregiver to my husband (now 13 months post radiation/chemo.) I wanted to tell you that, though my husband was resistant to the idea, the feeding tube ended up taking alot of pressure off of both of us. There is too much other stuff to deal with to have to be constantly thinking about getting enough nutrition as well. He finally got his at 5 weeks into radiation.

As far as planning a vacation (which sounds like a GREAT idea), the rule of thumb that has been repeated on this board and that we found to be very true is one month recovery for every week of radiation.

Sending good thoughts and prayers for healing and strength your way;
Anita

Stephanie,

I understand your concerns about vacation planning. Before I was diagnosed, my husband and I had planned a major trip and had put down a large deposit (unfortunately without getting trip cancellation insurance). Even with a letter from my oncologist detailing the reasons why we wouldn't be able to take it as planned, we were only able to get part of our money back. By about four months after my last radiation treatment, my facial swelling had gone down a bit, the mouth sores had healed, and I was feeling like I could handle a trip of a week or so, so we set up something on fairly short notice. However, rates of healing can vary, so it's hard to predict while you're still in the middle of treatment.

Regarding your dry mouth question -- I still have a lot of dry mouth problems, even 15 years after completion of treatment. I was in clinical trials for oral pilocarpine (a drug primarily used for glaucoma treatment which can help stimulate saliva production) about a year or so after I finished radiation. I found it helpful enough that I have been using it ever since, 3 times a day. It's one of those things that's not for everyone, but it can be helpful to some people. I don't know if it can be used while radiation is still going on, or if it must wait until after.

Your mother is fortunate to have you looking out for her.

Cathy