Hello everyone,

My mother had her first radiation oncology appointment today. However, the bad news actually came prior to that when I picked up the chest CT and report that she had done Friday. She has a 2 cm lesion on her right lung. The CT radiologist's reading of this was that it was "metastatic" based on his knowledge that she had soft palate cancer. She also has calcified hilar nodes and calcification in the spleen and liver and the presence of fluid "just inside or deep to the gallbladder in the hilus of the liver which may represent a metastatic focus".

So, we had the meeting with the radiation oncologist at Moffitt who said "they" have decided that she should be treated with once daily radiation for 35 treatments with chemotherapy added at the beginning, middle, and end of radiation. And then he said "Oh, by the way, there's also a lesion on your lung. You'll have to be seen by the Thoracic surgeon to determine whether it's metastic or primary. But I think it is primary lung cancer based on the film". I asked why the recommendation was for once-daily radiation instead of twice and he said there was no evidence that twice-daily was more effective. I guess we read different reference materials.

My mother and I had already discussed this prior to seeing this doctor. I told her that there was no way any doctor in the Moffitt Thoracic clinic was touching her - been there, done that! And surprisingly she agreed to a second opinion elsewhere.

Fortunately, I have her CT's and reports BUT Moffitt refused to give us her pathology slides. They said they "had" to be returned to the original laboratory. I told her that I would get the slides from the "original" laboratory and she could do whatever she wanted with the ones she had!

For now we have decided to find a local pulmonologist to have her lung biopsied so there is no "guessing" as to what it is. When that is determined, we will then decide where we want to go for another evaluation. We must find some doctors who will show some compassion and answer "honestly" the questions we have.

I would greatly appreciate any info from anyone that has dealt with head and neck cancer metastases or two primary cancers. Truthfully at this point, we are painfully aware that we are now talking "palliative" not "curative" but I do want my mother to have the proper care for what time she has remaining.

Sorry for the length. I needed to vent. Thanks for listening.

Cynthia

Oh Cynthia! I am just so very sad at this news. At the same time I applaud your efforts and very smart actions. Your mother could not have a better advocate. Many years ago I played that role for my mother for a different cancer, and can report that pitching an intelligent fit should get good answers, or you take your questions elsewhere. From my view point, you are doing everything right in very difficult circumstances. Please know you have friends here who have "been there, done that" and we understand. Vent anytime.

Joanna

I'm the guy that always has something to say. The facts come easy, the recommendations for treatment are on the tip of my tongue. I don't think that the phrase "economy of words" and my name have ever been used in the same sentence. But when I read posts like this I am at a loss. Obviously I am very sorry to hear about where this is headed for not only your mother, but for the whole family. I wish that something inspirational would flow from me, but every time that another person is taken from us by oral cancers and their metastasis, what I feel is not only empathy, but also frustration, perhaps even anger.

My wife and I have discussed the

Brain put it in perfect words....having been through a similar battle with my mom not long ago, I couln't agree more with what he says. I have to say, in my mothers doctors defense, that he assured her that he would want the same. If there is something that can be done that will be beneficial, not only adding on some time, that's a different story. However, if it is only a matter of time, comfort and peace of mind for the family as well as the patient should be priority. My family all got a chance to talk intimately with my mom, and tell her all the things we ever wanted to say. And even though watching someone you love so tremendously get ready to "move on" to their next level is a miserable thing, it is also a great chance to speak openly and honestly about feelings, fears, hopes, and love. I know for sure that I have no regrets..because I said all I needed to say. That does give some peace of mind in the long run...trust me. My prayers and thoughts are with you, your mom and entire family.
brooke