Hi Marjorie,
I moved your post to a new topic so people could find you easier

Marjorie
Member
Member # 1248

posted April 15, 2004 08:11 PM
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I don't know if I'm happy or sad that I found this website. My mother who will be 85 in Sept. was just diagnosed yesterday with cancer of the tongue. Everything went so fast, we were at the oral surgeon at 9:00 am and he gave the diagnosis, a rush appointment at the ENT the same day and he got us an appointment the next morning at University of Penn with the ENT Oncologist. He explained to us that it is very curable and she is scheduled for surgery on the 13th of May. He said at Univ. of Penn Hospital they do not use radiation, that surgery is the preferred method of treatment, but that radiation may be used after surgery if cancer is found in the lymph nodes of the neck. She is frail, weighs 114 and cannot really afford to lose any weight. I am trying to fatten her up prior to her surgery but I have read some real horror stories here. I am new to some of the words, like Peg, and will have to learn what it is. Please pray for her and for us to make the right treatment decisions. Thank you all.
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Posts: 1 | From: New Jersey | Registered: Apr 2004 | IP: Logged

Hi Marjorie,
and welcome to the forum. In the long run you'll be glad you found us because we can help take some of the mystery out of this.

The first thing to do is take a deep breath. Remember that many of the stories here are based on the worst case scenario and your mothers experience may be far easier.

It is vital that someone accompany your mother to all of the appointments and take good notes. You are discovering, like the rest of us, that treatment decisions must be made rather quickly.

Among first things you will need to know are the staging and type of cancer. This will be the basis for her treatment decisions.

The PEG is a stomach feeding tube. Typically not a big deal. There is much information on this elswhere on the site. Some of us didn't need one. It is important that you meet with the nutritionist and discuss your options there also.

It sounds very promising that they stated the cancer is "very curable". There have been others here recently with older parents who have gone through this and they will be responding to you also.

Is she being treated at Abramson Cancer Center or a network hospital?

Hello Gary,

Thank you so much for your help. As I said, I'm in the beginning stage of this ordeal. She is scheduled for surgery at University of Pennsylvania Hospital and her Dr. Gregory Weinstein is quite reknowned there. I guess I have not asked enough questions, such as what stage is her cancer. She had no other side effects with the exception of a small sore on left side of her tongue. An MRI is scheduled for soft tissue of her neck with GAD and we must take films to her pre-op visit on 5/5. I will have to do more searching and learn a lot more before this visit as I have many questions. Other than this, she has always been in excellent health and she is quite optomistic about the surgery. I will be searching this site so that I am armed with questions and answers prior to her surgery. Again, thanks for your concern.

It sounds like an early stage and a single treatment modality is often recommended for that.
Ask for a copy of the MRI radiologist report as well but remember that it is a small part of the diagnostic information so don't try to read too much into it. We are here to help you.

It's great that she is optomistic and has a positive outlook - that really helps a lot.

Hi Marjorie,

If it makes you feel any better, I have been being treated at the same hospital since my first surgery and they have managed to keep me alive. Read my signature at the bottom of this to see what and how long ago that was. Also as my surgeon told me, 'remember surgeons think like surgery'.

Well all be praying for her on the 13th.

Take care,
Eileen

Has the surgeon told you how much of the tonuge they are likely to take? If it's more than 30% I'd look into a reconstruction of the tongue called a free flap, usually from the forearm. This helps with problems like aspirating and speaking. I hope that it's not that extensive, but sometimes the surgeon doesn't know how much he'll take until the margins come back clear of cancer. I wonder why they are waiting so long to get her in? Is that the fastest date they could schedule?

Lynn

Marjorie,

I am sorry to hear of your mother's diagnosis. You are beginning a journey of learning and you have come to an excellent place to begin your education process. As you know more feel free to post for others in similar circumstances can help you understand much of what is going on now or in the future.

Ed

Hi Marjorie
Don't forget we are all here for you both.. If it gets tough.. We will always be here... Don't forget that... What ever it takes we will support you both...
Love and Hugs
Helen

Hi Everyone,
My name is Carol and I am Marjorie's sister. She told me about this website and it has been most helpful. I live about 1200 miles from my sister and Mom and am anxious and sad that I'm not there right now. Hopefully things will turn out well for us.
Thanks,
Carol

Hi Carol
Please as I posted to your sister.. share anything you cannot deal with.. we will all do our best to support you... ask questions.. keep posting it's the best way to get the information you need right now..
Love and Hugs
Helen

Dear Marjorie,
Since March 10th, my mother (age 67) has undergone 3 surgeries with Dr. Weinstein (floor of mouth resection, partial laryngectomy, modified neck dissection). He is an excellent surgeon and you couldn't ask for a better hospital. Rest assured, you are in the right place!

We were a little skeeved about her PEG tube at first, but now realize that she is getting all the nutrition she needs to get well. The tube was inserted during the first surgery. It took over 4 weeks for the incision to heal and it still leeks a little. Better she had the tube placed when she was relatively healthy as opposed to having it inserted when she became malnourished.

Mother also had tracheostomy to ensure that she could breathe adequately after the surgeries. We are still really skeeved about the trach tube. It needs to be suctioned out quite often. However, it is only temporary until the swelling in her neck goes down.

Coincidentally, we have an appointment on 5/5 with GSW. I would be happy to discuss our experience with cancer, Dr. Weinstein and HUP in detail if you like. I found that sharing experiences with others helps a great deal. This is my first post so I

CCUFF......you can private message the person that you wish to talk to and there is no way anyone at OCF or elsewhere can access whatever you send. Click on the second little icon of the people shaking hands to do this. You could also ask the person you wish to talk to to private message you their email address and speak to them that way. OCF is considering putting the email links to everyone back up on the board (A fourth litlle icon that we took off). We took them off line when we thought that they might easily be acessed by spam companies, but many people have contacted me that they want them turned back on. We had not had a problem before, we were just trying to be safe and protect the posters.