My Mom is seeking a second opinion because her ENT & Oncologist do not agree on how to proceed with her treatment. So far, she has received her lifetime of radiation and about 30 mild chemo treatments. After one month of treatment the pet scan showed that the cancer was already back in her right tonsil. They believe this is where it started originally. I should also mention that she had ulcers maybe even tumers under her tongue.

They than agreed to take the right tonsil out. She had that done over one month ago. Now they are suggesting the Flap procedure and possible taking out part of her jaw but she wants no part of that! She has agreed to have a scrabbing of the tissue behind the right tonsil which is not scheduled until the 30th of this month.

My sisters and I are scared that if she doesn't have this flap procedure that she will not make it. Her depression is very bad and she cries every morning due to the pain. She can't seem to find anything that helps it except for Advil. Narcotics don't seem to help and most cases just knock her out.

We are seeing her ENT again this week and I need to know the right questions to ask him. Any suggestions?

We are all so scared and frustrated with this that it's really getting difficult to deal with.

What can you do for someone that is refusing to do what the doctors recommend and feels that it will just kill her in the long run regardless of what she does. I should mention that she has lost 4 brothers & sisters to cancer and two sister in-laws.

Please help!!!

Debbie, I'm so sorry about your mom. Hopefully we can help. Is she being treated at a comprehensive cancer center? if not, get her to one in your area. Make sure you have pro's on the job that have lots of experience with successfully treating this type of cancer. Some of the hardest decisions are made considering treatments that will effect quality of life issues with head & neck cancers. I can relate with how your mom is feeling. 2nd opinions are a good idea. Erik

Pain management is a basic patient right. Advil is not going to get it. She needs "long term" opioid pain management such as Fentanyl pain patches and "short term" such as morphine for the breakthrough pain. Yes it can knock you out until your body adapts to it. Sometimes they have to try different things like Oxycontin, etc. She needs to describe her pain on a scale of 0-10 with 10 being the worst, unbearable, etc.

She probably needs medication for depression as well as this is a very common treatment side effect.

The flap procedure is to replace the bulk of the tissue that was removed during surgery. It shouldn't impact her survival.

The ulcers could be caused by a variety of post treatment issues such as radiation damage, thrush. etc. They can take a long time to heal but they they do.

There are people here who have had flaps and some with piece of jawbone removal and are doing well. I am sure that they will share their story shortly.

Take to heart what Erik said about going to a comprehensive cancer center. She really needs a coordinated medical team approach to this disease.

Your mom needs pain meds and you should demand them. A lot of them come in liquid form and it would be easy for her to take. If her worst pain is in the morning then thats when she would need it most and then she could take a smaller dose during the day if she feels better. Nobody has to suffer these days but sometimes you have to stand up and get tough to get what you need.

My thoughts are with you and your sister. I hope things turn out for the better soon.

Blessings,
Barb~