My sister was diagnosed with squamous cell cancer of tonsil (right) in Feb 2002. The day she had the neck dissection because of a lump the family was called in and told that tne swollen node was cancerous and they had to find the primary source-the tonsil. 22 lymph nodes were removed with that one being the only cancerous one. It was stage 4. She has recooperated great since having radiation twice daily for 7 weeks. She is back to playing tennis. She just went for her 2nd 3 month check-up and all looks fine. However, when I ask her what scans or exrays were done she says he just looks down my throat with a scope at where the cancer was. All she sees is a radiation oncologist. He has told her the only reason to also see a medical oncologist is if she had chemo. He also has told her all she needs to see is her primary care doctor, that her chances of getting cancer back were as much as anyone else. I am so afraid that he is not doing enough and that a couple of years down the road may be a regret. I have talked to her about mu concerns but she puts all her trust in this one dr. and I don't know what to do. Maybe if some of you would be kind enough to post to convince her or to calm me!
I don't know if this will help you or not but my primary care doctor at the moment is my oncologist (I am currently in treatment-chemo/rad). I was told that after treatment has ended it will revert back to the Head and Neck Surgeon for bi-monthly exams and occasional PET and MRI scans for several years (and he will then be my primary care physician). He made the original Dx based on biopsy, and MRI.
My husband finished treatment for stage IV ssc of right tonsil on July 21,2000. He was treated at MD Anderson cancer Center in Houston TX. After treatment, he went back every three months for the first year and a half. Each time they did blood work, CT of head and neck and chest xray. After the first year and a half was up, we have been going back every six months for the same tests. Were told when we go back in July, our three year anniversary, yeah!, we will be put on yearly schedule.
Hope this helps.
Julie
It appears that each doctor has his/her own way for the follow-up checks. I was also diagnosed stage IV tonsil cancer. I had surgery, Rad and Chemo. The radical neck dissection removed more than 70 lymph nodes with 4 of them positive. I think the treatment was pretty agreesive and I was OK with it. What concerned me is the follow-up checks. My ENT doctor simply looking into my throat with his naked eye, not even using an endscopy, then felt my neck for possible lump, that's it.
The Rad oncologist ordered CT head, CT neck and chest X-ray at the end of the RAD treament as the baseline INFO, I will be seeing him again next month for another CT neck and CT chest. Nobody ordered blood work, therefore, I asked my primary doctor to do it for me, but I am not sure if the liver fuction test he ordered was appropriate for cancer detection.
I am still confused about the procedure for these follow-up checks. It seems to me that there are standard methods for treatment but there is no standard methods for follow-up.
Molly,
Just my opinion, but you hopefully you can get your sister to a different doctor. Of all my docs the radiation oncologist was my favorite, but he also never did anything on a follow-up but look down my throat and ask me how I was. And say yep, he burned that tonsil up.
I don't know that he's supposed to do any different. My ENT and Rad guy were on alternate months for follow-up. I wasn't comforatble with someone just looking down my throat (thanksto this board) and switched to an ENT Oncologist, who immediately sent me for blood tests and ct scans. No one ever did an after rad & surgery ct scan. So no baseline,until he sent me.
I'm not sure how long he would have waited for another series of scans. I didn't get to find out, because while all these docs were making really good money off a 10 minute appointment to LOOK down my throat, I was growing tumors on my liver.
No one ever did an abdomen or pelvis scan on me to see if my SCC had spread. Angry, yes I get angry, if it hadn't been for Brian and this board, I might not have gone to the doctor when I did. And I have Stage 4/metstastc liver cancer.
Julie has the right things happening and hopefully with my new team of oncologists I'll be in good hands in the future. (by the way, none of my cancers have shown in the blood-not even the liver cancer)
Take care,
Dinah
Molly,
I had CT Head, Neck and chest taken as a baseline about 2 months after radiation. I alternate between seeing my radiation oncologist and ENT each month. I see my medical oncologist about every three months. So I see at least one doctor each month. Most of the appointments consist of an oral exam and feeling my neck. My medical oncologist orders blood work every three months.
I was told I would be monitored every month for the first year and then every other month for the next year. Sometimes they use an endscope, but not always.
The follow-up CT exams are a different story. I have to ask for them. My ENT wants my radiation oncologist to order them. My CT exams are schedule about 3 months apart so far.
I am on a bi-monthly check up with my oncologist who is the doctor in charge of my case throughout.I don't have appointment with my ENT doctor unless I request. I have blood test every time and ever since completing the last radiation a year ago, I have CT scan, ultra sound every six months. My next scan falls in March which includes abdomen scan and head/neck scan. I am lucky that money is never an issue because I am treated in a public hospital and since I am a civil servant, I enjoy medical benefit. But even if you aren't, medical charges in public hospital in Hong Kong are very low.If I were treated in a private one, I had to pay a lot for consultation , treatment and medical tests, etc.
Well I'm going to weigh in with an opinion, which is just mine, and not that of a doctor. Each institution has a written protocol for follow-ups. They have to adhere to this, or there are liability issues. Missing a recurrence due to inadequate monitoring gets hospitals sued. For those who are seeing a private doctor outside of a hospital or multidisciplinary medical setting, they have a more hit and miss issue with follow up monitoring. (I