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2nd opinion different from 1st

StruTanToot
Posts: 108
Joined: Aug 2012

I went to Duke for my second opinion today (1st came from UNC). The differnces:

Duke is not ready to stage it. UNC said stage one.
Duke wants to use IMRT radiation. UNC wants to do traditional or 3D.
Duke did say the final decision would be based on the planning session.
Duke is giving me a PETScan. UNC said nothing about this scan.

While I like doctors at both (except for the surgeons), I have decided to be treated at Duke. Duke seems more thorough to me because of the PETScan.

The radiation oncologist at UNC said I was state one and "completely curable." Duke is not ready to say that. All those feelings of fear came rushing back, and I'm struggling right now.

Does anyone have any thoughts about the differences in the opinions?

Thank you everyone.

mp327's picture
mp327
Posts: 2883
Joined: Jan 2010

I left you a comment on the other thread, but I will repeat--I think you are making the right decision by going to a center that has IMRT. It's more targeted. Also, getting a PET scan for staging is excellent. I know you have been told by UNC that you are Stage 1 and do not want to hear anything different. However, keep in mind, that treatment for Stage 1 or Stage 2 would be the same. I would insist on that PET scan to rule out any other hot spots that a CT might miss. You and your docs need to know everything that needs to be dealt with from the very beginning. Hopefully, it will show only the anal tumor and nothing more. Keep your head up and try not to be fearful. This cancer has very high cure rates and you will come out on the good side.

sephie's picture
sephie
Posts: 521
Joined: Apr 2009

you need IMRT and you need a Pet scan. This will make it easier to kill it and will be better for your body in the end. you will conquer this. sephie

Dog Girl
Posts: 100
Joined: Sep 2010

I would definitely recommend a PET scan. In my case my tumor (4 cm on my sphinchter muscle) was growing north behind my anal canal (like a lower case "b") and this did not
show up on my initial CT scan, but did show up on my PET scan. Therefore they were able to direct radiation to that area as well to eradicate it. And Martha has already told you about the benefits of IMRT radiation. (Check with your insurance to make sure that they will cover that. I didn't have a problem getting my approved; I just had to get prior approval.)

I think you will find that most doctors will be very conservative in what they tell you especially if they don't have test results.

StruTanToot
Posts: 108
Joined: Aug 2012

Thank you all for responding and for sharing what you know. Most of all, thank you for your encouragement and support. Because of you, I feel a lot better. I feel like your arms are around me and holding me up. Just can't thank you enough. Please know I that I am more grateful than I can say.

I hope each of you are doing well. Everyone on this site is in my prayers. Thank you for being here for me.

mxperry220
Posts: 360
Joined: Mar 2011

Before any treatments started I had CT, MRI, and PET scans. Once the doctors got the results back from these tests then a treatment plan was developed. I live in the Dallas/Fort Worth Texas area. Baylor Hospital/Plano treated me.
Mike

StruTanToot
Posts: 108
Joined: Aug 2012

Hi Mike...I had the radiation planning session today and the PET scan is schedule for next week.Treatment starts Aug. 27.

mxperry220
Posts: 360
Joined: Mar 2011

Try not to worry at this point about staging. What is important is that the doctors are all on the same page and there is the agreement as to what the treatment plan will be for radiation and chemo. I was Stage 2. I was diagnosed in November 2008 and completed treatments January 15, 2009. 30 doses of radiation and 2 rounds of chemo (Mytomycin and 5FU).
Mike

mp327's picture
mp327
Posts: 2883
Joined: Jan 2010

If you haven't already done so, I would highly recommend getting on the website for the National Comprehensive Cancer Network (NCCN.org) and registering so that you can access the latest guidelines for the treatment of anal cancer. There is very good information contained there and you will become a very well-informed patient, which I think is very important. I would suggest printing out a couple copies of the guidelines and discussing them with your doc(s) so that you are assured that everyone is on the same page regarding your treatment plan. Also, reading through the guidelines before meeting with your docs will prompt some questions for you to ask.

As you get closer to the start of treatment, please update us when you can. We are here to help you through this journey!

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