| Joined: Mar 2003 Posts: 4 Member | OP Member Joined: Mar 2003 Posts: 4 | My father has very recently been diagnosed with oral cancer. Starting on the back of his tongue and spreading onto his tonsils. Our fear is that since there has been a swelling on the side of his neck for 3 months with the complaints of a sore throat and ear ache, they fear lymphnodes may be in play. All this time he felt he had had a bad cold that he simply couldnt shake. After a visit to the oncologist yesterday, radiation is already scheduled to begin 2x daily for 3 weeks followed by chemo in a few weeks. PET scan and MRI next week. Meanwhile it has been difficult for him to speak from the biopsied area and my mother is actually forced to cook. (Not always a good thing! With that said we are looking for help. He will obvioulsy need his strength as he embarks into treatments but it will be painful to eat nutritionally. I fear the constant Ensure will be a depressing sight to him. Are there any recipes for soothing and smooth-type foods? Mom and Dad are in their mid 60's and live in Florida during the winter and Maine in the summer. Currently they are alone and away from most friends and family. They are frightened and need some guidance for choices especially since things are happening so quickly. Even without the MRI, they have already scheduled radiation and chemo. I have read in some of the posted notes of alternatives to radiation. What of 2nd & 3rd opinions. How do we determine the competency of the doctor? Should they remain in Southern Florida for treatment? Should they explore alternative Medical centers? My father has mentioned the Cleveland Clinic since his dad died there 40 years ago from colon cancer. Which are the best for oral cancers? Laurie, member 638, and I are sisters and we both share this surreal moment in time. We are numb and looking for any help. Thanks for all of your time. God Bless Lisa | | | | Joined: Mar 2002 Posts: 1,140 Likes: 1 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Mar 2002 Posts: 1,140 Likes: 1 | Welcome, Lisa and Laurie. I know this is a terribly scary time for you, but to me it looks impressive that things are moving so quickly. As you may have read, time is of the essence, so I think your dad is in good hands as far as that goes. About food, do a search of this forum for "cookbook" and you will find a discussion of one written by a nutritionist for people with difficulty chewing and swallowing. You might want to look into the possibility of a PEG tube. Many of us were unable to swallow anything without a great deal of pain, and the tube was literally a life saver which allowed water, food, and medication to be taken easily. Do another search for "PEG" and you will find all the information you need and more. This has been much discussed, particularly by me, who was unreasonably afraid, and as it turned out, unnecessarily. Given the area involved, I would guess the docs will suggest a PEG, and you can then be up to speed about it. The next couple of months are going to be a real battle for your dad, and stressful for your family. Know that there are many people here to answer your questions and provide support. Joanna | | | | Joined: Nov 2002 Posts: 3,552 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Nov 2002 Posts: 3,552 | Ask for a meeting with the hospital nutritionist and they will give you all kinds of information and recipes. I meet with one every week and she is part of my treatment team.
Gary Allsebrook *********************************** Dx 11/22/02, SCC, 6 x 3 cm Polypoid tumor, rt tonsil, Stage III/IVA, T3N0M0 G1/2 Tx 1/28/03 - 3/19/03, Cisplatin ct x2, IMRT, bilateral, with boost, x35(69.96Gy) ________________________________________________________ "You are a mist that appears for a little while and then vanishes" (James 4:14 NIV)
| | | | Anonymous Unregistered | Anonymous Unregistered | Welcome to the board. Seems as things are moving quickly for your Dad and that is a positive happening. Joanna answered your questions about nutrition...that and the peg tube have been discussed extensively on these boards. An dif you will go to the sitemap there is even more information. I was treatened with the peg tube and it was never inserted. Which was not a good thing after all. They are invaluable at keeping up strength and nutrition. I just received the Easy to Swallow Cookbook and the recipes are very simple and look pretty good to me.
As far as hospitals and treatment centers you will find that MD Anderson and Sloan Kettering alternate years as the top Oral Cancer Centers in the coutry. Patients are treated by teams of docs - oncologists, chemo, surgery, radiation. I wasn't that lucky with my treatment and wish I had been. From what I have read that is the best way to go. Again go to the sitemap and look at all the offerings.
Good luck and know that there are many people here to answer questions and try and help. This board has some of the absolute best caregivers in the world.
Take care, Dinah | | | | Joined: Mar 2002 Posts: 4,912 Likes: 52 OCF Founder Patient Advocate (old timer, 2000 posts) | OCF Founder Patient Advocate (old timer, 2000 posts) Joined: Mar 2002 Posts: 4,912 Likes: 52 | I second the motion for MDACC and MSKCC as the two top choices. Go to the resources page of the OCF site... about halfway down you will find two things, a list of web sites for the main cancer centers, and a link that goes to NORC "the best hospitals" This will help you narrow a choice. We all wish your father the best possible outcome.
Brian, stage 4 oral cancer survivor. OCF Founder and Director. The first responsibility of a leader is to define reality. The last is to say thank you. In between, the leader is a servant. | | | | Joined: Mar 2002 Posts: 188 Gold Member (100+ posts) | Gold Member (100+ posts) Joined: Mar 2002 Posts: 188 | Lisa and Lori ... So sorry to hear of your father's cancer. However, you've come to the right place in search of insight, questions, and answers with regard to Oral cancer. Fire away with the questions; there is always someone on this board who has "been there, done that" and are more than happy to share their findings and results. Keep us posted. We care. Sincerely, Donna
SCC first time 1989, with a diagnoses of 'cancer in situ' removed lesion, no other treatments. SCC recurrence 1997 of tongue and floor of the mouth. Stage III /IV Hemmiglossectomy (removed over 60% of tongue/ floor of the mouth), free flap, modified neck, RAD and Chemo(cisplatin, 5fu) simutainously. Cancer free 6, yes, six, years!
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