Hello All,

Let me first apologize for the ranting and raving but I am very angry and frustrated right now and need to vent. For those who read this, what I am looking for is either validation of my thought process or being shown the errors in my thinking, and any suggestions you may have.

Up until today, my mother's course has been seeing a GP for the growth on her palate - he said "probably" oral cancer - go to oral surgeon for biopsy. Also get Neck CT. Got biopsy -confirmed squamous cell, CT showed bilateral neck adenopathy. Today was THE day. We would know what other tests were needed, possible stage, and treatment recommendations. This was at an NCI facility. Well, they should have paid me for what my mother was told - or in my opinion, what she "wasn't" told. He did not explain anything of a cancer nature to my mom, did not review the CT with her. After examining her throat, nasal passage, and palpating her neck (he did not look into her ears), he pronounced two options: Surgery then radiation or Radiation and Chemotherapy, then MAYBE neck dissection depending upon lymph node response. His recommendation was the second. That immediately told me that he was not going to be aggressive in his treatment. Now, my mother is not really interested in having surgery, but I don't believe in doing things half-assed. I specifically asked the doctor if he was approaching this in a curative manner or a palliative manner. He said curative, but I don't buy it. I even had to ask him what stage he thought this was (Stage III). After some more pointed questions from me (the purpose was for me to get a better spin on where this man was coming from), he said she would have appointments to see the radiation oncologist, the prosthodontist, a CT chest scan, and insertion of a PEG tube. No blood tests, no head CT, no further elimination of possible other metastases BEFORE deciding on course of action. And the chest CT was not scheduled until after the radiation consultation and PEG tube insertion. To me, they are putting the cart before the horse.
I pitched a fit and told them to get us a script and we would get the chest CT. It's being done this Friday.

So, am I missing something or are they? There is another facility about 90 miles away that I would consider but my mother can't justify the drive. On one hand she wants to fight but on the other hand I don't think she's fighting the "good" fight.

I would appreciate your spin on the situation and any recommendations.

Thanks for listening.

Cynthia

P.S. Other than saying squamous cell, the doctor didn't even give us a specific name i.e. oropharynx, base of tongue, larynx. He's guessing that it is tonsillar. As far as I'm concerned, they are not being paid to guess!

I think you are correct in wanting the full story beore signing your mother up for a course of treatment. With my own mother all the tests and xrays were done and then the test results and options were discussed with my mother and her children present. I don't blame you for thinking about another facility. There aren't alot of second chances with this kind of cancer if the doctor gets it wrong the first time. As far as pursuing treatment, I found that my mother would pursue anything her family thought she should. She became very dependent on her 4 children during the course of her illness and while she has returned home she still depends on us for help in making any healthcare decisions. Maybe your mother is just looking for reassurance that she will have someone by her side as she goes for all these procedures and the treatments she will eventually have to undergo. Best wishes and hope your luck with the medical establishment improves.

I agree 199% with vb.....you need to be as informed as possible, and if you are not comfortable with this doctor, get another. I had my mom get a second doctor's opinion (which was uninformed) and then we decided to go with a specialist 127 miles away! We traveled every day, 5 days a week, sometimes twice a day for radiation and chemo. The surgeries were also at the same place, but until the day I die, I will say..IT WAS WORTH IT! Unfortunately, though, like in your case, not all necessary tests were performed initially ( my mom's choice) and by the time she was recovering from the oral cancer, it had metasticized to other areas. Im not saying this to discourage you, I want to ENCOURAGE you....have as many tests done as she needs and keep informed. If the doctor she saw doesn't give you enough info, find someone who will. Also, make sure you keep checking in here, because, even though doctors are great, you will find answers to questions here as well. The wonderful people on the board speak from experience. Good luck! Prayers are with you both!

Cynthia,

I agree with both of the posts above. Go see another doctor. Ask questions and get answers. Your Mom is lucky to have you with her. My husband asked all the questions and helped me make my decisions. I was in too much shock just hearing the words "You have cancer." Keep pushing until you get the answers that you need/want. If you have to travel to another facility to get proper treatment, do it. Your Mom deserves it. If she doesn't want to go, she may be in shock as I was. Push her if you have to. I will never regret the pushing, pleading and explaining my husband put me through two years ago.

Take care and you are in my thoughts.

Anne.

Well you didn't say where you were, so I can't offer other options to a multidisciplinary facility for second opinions.

My PERSONAL opinion, is that a GP shouldn

brian,

What are the sentinel nodes?

Thank you for your responses.

My mother and I had a conversation "on the fly" due to her receiving a phone call to schedule her PEG insertion next Thursday.

She asked me what I would do and I told her. What I would do would involve leaving this state (Florida) and seeking treatment elsewhere. Having dealt with this facility, I have no faith in their ability (nor any independents in the area). She can't even see the worth of driving 90 miles.

We have totally different views on how to approach this. I think she simply wants a doctor to tell her what to do and that's it. I simply can't fight with her - if she doesn't trust me to do what I think is best for her, I'm not going to cause more tension. She knows what I went through with my husband. If she didn't learn anything from that, I can't force her to do something she doesn't want to.

Of course, I will be by her side to help her through whatever treatments she decides on but I will not butt heads with the doctors if I think something is not appropriate. I simply do not have that fight in me.

Thanks again.

Cynthia

My mother decided against both oncologist and ENT's recommendation not to have surgery to remove part of her tongue last May. She agreed to neck dissection followed by radiation/chemo. By December her ENT was worried that there was a spot on her tongue that he hoped was the remains of scarring from radiation. He had her biopsied and it was cancer again. Only this time it had spread to her mandible and floor of mouth. After all the tests again she was scheduled for surgery in February. She had over 1/2 her tongue removed her mandible on the right side and part of the floor of her mouth. She was in surgery for over 6 hours and in the hospital for a month due to infection, etc. My point is that maybe you can convince your mother she should get more information from more informed sources before she opts to listen to her GP. My mother is still recovering and wishes she had listened to her doctor last May and maybe she would not have had to have such drastic surgery. She is doing well, but has a very difficult eating, drinking and swallowing as well as much altered speech. You have been through the ringer with every thing else, but you will most likely regret not trying at least once more to convince your mother to see another doctor before she makes her final decision. Best of luck!!!!

You can only push so hard and far. Everyone in the end is responsible for their own decisions and the consequences of those that they make. We all are the architects of our own destiny. If the most that you can do is be supportive of her decisions, than that is the role you will be delegated to play. With cancers in general, there isn't time to change plans mid stream. I hope for the best possible outcome for your mom.

Molly,

All lymph nodes are grouped in chains, or sequential lines of attached nodes. The logic behind the sentinel node concept is if the first node in a particular chain isn't involved, and contains no cancer cells, those nodes further down the same chain will be clean also. Disease does not skip over nodes but is transferred in sequence further and further down the chain as it progresses. The first node in a chain is the "sentinel " node.