Friends,
This morning I got a telephone call from the P.A. for my oncologist at MDACC (lacking in bedside manner) informing me that my CT scan last week showed a node below the chin that was present in a previous CT scan last year, but appears to have changed somewhat. She said that the oncologist ( who is out of town ) wants me to come back in 3 months for another CT scan so that they can make a comparison. I asked that she have him call me when he returns to town.
I am not satisfied with this little bit of information so I immediately emailed my surgeon's P.A. who has always been a caring friend to me. She will have the surgeon take a look at the scan and the radiologist's report and get back to me. I also emailed my radiation oncologist and asked him to take a look.
Even though I have been dealing with this stuff and MDACC for almost 3 years, I had to remind myself to be my own advocate and not to sit back and just take it. It annoys me that the only person that I heard from was an insensitive P.A. and the prospect of sitting around for the next 3 months wondering what is going on is not pleasant.I hope to get better explanations from the various doctors.
Danny G.
Dear Danny
I agree with you. You're entitled to know what is happening NOW. I recently saw that William Hurt film The Doctor on TV. (The surgeon finds out what its like to be an oral cancer patient.) You are in charge of your medical condition, not the doctor, who needs to give you more respect.
I hope that your receive good news when the node is investigated and that you have a peaceful and optimistic next 3 months.
Love from Helen
Danny-
Wow, tough news to hear and have to sit on for three months. Give em ?ell and hang in there! Will keep you in my prayers! - Kris
Danny, sorry to read the news. Hopefully, it will just be a small, unimportant thing which is easily explained. Sounds like you are taking all the right steps to insure an early and complete look at the information and to develop a plan to address it. My prayers are with you.
Hello Danny; You're absolutely right to be dissatisfied with this situation. I know you will be right back at them until you have the assurances you require. Three months is an eternity to wait for news of any kind, whether it's good or bad.
All the best,
Fran
hi danny, what ashocking way to treat a patient u will be up tight eneough without themm adding to it. u go give them hell danny and query there policys and procedures
prayers for u danny
maz
Friends,
Thanks for your kind thoughts. My surgeon's P.A. (my guardian angel at MDACC) emailed me copies of the radiology reports and I also heard from my Rad. Onc., who was not greatly concerned but who said that I might want to get an ultrasound, possibly followed by a needle biopsy. One of my best friends is a radiologist and I forwarded the reports to him, and he is also not greatly concerned, and further, said that the little node is so small that it might not even show up on ultrasound, and that I might not want the risk/reward of doing the needle biopsy.
So, I am not greatly concerned either, but at least I turned up the heat a little and got a some action going. Ultrasound, although perhaps not so definitive, is easy and non-invasive so I might at least try that. My radiologist friend is going to speak to a radiologist at MDACC who does PET scans. Whenever I speak to my team at MDACC about PET scans, they always seem to suggest that PET scans are not appropriate for head and neck cancer,and yet I know that others, including, Brian Hill, have had PET scans. Oh well...life goes on.
Danny G.
Danny
Pete has PET scans every 3 months.
Can you Demand one? For peace of mind if nothing else?
No matter how much you are told "it`s nothing to worry about" you are going to worry about it!
I wish the healthcare community would realise this and not just blow us off.
I know they are busy and they do not want to get emotionally involved but... a weekend waiting for a test result is torture , never mind 3 long months.
Love
Marica
Danny,
I really understand your annoyance, it's amazing how information so delicate can be delivered so haphazzardly. I've been know to blow my stack when faced with a couple of similar situations. I try to be understanding that these people see things all the time, and perhaps they can become a little calloused depending on the day they're having, but then I always tell them to put themselves in the shoes of a patient or caregiver and ask them to think about what they just did. I'm sorry you had to experience that. Best wishes.
Dave
Hi Danny,
I've had two or three PET scans in less than two years. Have also had several MRI's And CAT scans during the same time. Sorry about the way a P.A. called to give you such unsettleing news. Wait three months, Give me a break. Waiting three days is hard enough. Keep giving them hell Danny!!! You come first.
Danny Boy
Though I understand their limitations and their over-sensitivity at times, I'm a believer in PET scans. My doctor ordered one last spring after I complained about some tenderness in an area of my neck. It came back showing a "hot spot". That set in motion me discovering that I had a quarter-sized cancerous lymph node. My doctor couldn't feel it when he did the manual test, even after knowing it was there. Who knows how long I would have gone not knowing that tumor was in there if not for my doctor's hunch and him encouraging me to have a PET done... Just my .02 worth... (FYI - my last PET in November came back negative for cancer recurrence)...
Friends,
I am lucky enough to have a first cousin here in Houston who is an eminent radiologist who recently retired from one of our best hospitals and opened imaging clinics. I sent him my latest reports from MDACC and he told me that I absolutely need to have a PET scan and he is scheduling me for one ASAP. He says that he views PET scans as essential in head and neck cases,thinks that we should have them every few months, doesn't have a problem with false positives and does not understand why they are not widely used at MD Anderson.
I am excited about using this diagnostic tool and not having to wait 3 months.
Thanks for all of your support and best wishes to everyone.
Danny G.
Danny, if you can get a PET/CT fusion...it is much more diagnostic. The combination of the data from the CT overlaid on the PET helps separate and define the importantPET findings from the ones that are lesser so.
Today I heard from my surgeon's P.A. regarding my having the PET scan next Monday. My docs at MDACC have no objection to me having the PET scan but their position is that PET scans are not an effective tool in diagnosing recurrences of head and neck cancer.
Heck, I don't know who is right but I am darn sure having the PET scan done and happy that I am doing something pro-active and immediate.
Danny G.
There are several articles in the news section of the OCF site that shed some light on this. One is a comparison of MRI, PET and CT scans, see
http://www.oralcancerfoundation.org/news/story.asp?newsId=671 and the other, a description of the combined PET/CT scan
http://www.oralcancerfoundation.org/news/story.asp?newsId=504 and its potential value.
It appears to me that there are not enough data yet for the oncological community to recommend a specific protocol but early returns make the PET/CT combo the imaging technique of choice. - Sheldon