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everclearpc82's picture
everclearpc82
Posts: 21
Joined: Jun 2012

Well let me start by saying hello and my name is Patsy and I am 3 weeks shy of 30.I found out I had a malignant tumor in my rectum In the beginning of June.So I did all the research I could find on colon-rectal cancer when I went to meet with my oncologist they called it a squamous cell cancer so they think it might be anal i have to go to John Hopkins soon to figure that one out.So when I got my pet scan results back no good news a spot on my liver and one on my lungs.Did the liver biospy on Friday which was more painful then I thought.So when the results get back they will just confirm what the doc and I think it has spread.So then it is gonna be stage 4 and a big and long fight on my hands.I go to meet my radiologist on Thursday.I was wondering if there is any advise or questions I should ask my doctors that You guys wish you would have asked or think it might help me out,any advise would be great I have three small kids and I need to beat this for them.Thank you all:)

mxperry220
Posts: 369
Joined: Mar 2011

I had Stage 2 anal cancer. I was diagnosed November 2008. Below are the questions I took with me to discuss with my raiation oncologist. You might havesomeone go with you as a "second set" of ears.

What type of cancer do I have?

Is this considered a type of anal cancer or rectal cancer?

Is this a common type cancer?

How much of tumor did colon rectal surgeon remove?

How much of tumor remains?

Will treatments begin after tumor removal heals?

How many radiation treatments will I need?

How much chemo will I need?

What will be frequency of treatments?

How long can I expect treatments to last?

What is prognosis of my cancer condition?

Is this a common type cancer?

What stage is my cancer?

How many cases like mine have you treated?

Will treatments be painful?

Will I have pain medication to control pain?

Should I expect hair loss?

What are next steps?

Hope this helps some.
Mike

mp327's picture
mp327
Posts: 3116
Joined: Jan 2010

I am so sorry to read of your situation. Mike has provided a great list of questions and his advice to have someone accompany you is absolutely correct. I would add a few more questions to ask your doctors.

1) Is surgery an option for the liver and/or lung mets?

2) If so, would this be done prior to or after getting the standard treatment (chemo & radiation) for the anal cancer?

3) Can we pursue a clinical trial, keeping in mind that one usually has to have had the chemo/radiation prior to getting into a trial?

4) Can I get your assistance should I decide to be seen at MD Anderson in Houston (Dr. Catherine Eng is located there and is one of the leading experts on anal cancer).

5) If going to Houston is not possible, will you agree to pursue a phone consult with Dr. Eng after she has received all of my test/scan results?

6) Are you familiar with the Hainsworth study (google Dr. J.D. Hainsworth--he came up with a protocol for treating metastatic anal cancer to the liver)?

7) Are you familiar with Dr. Bernard Cummings who is also very knowledgeable in the treatment of such cancers (he is located at Princess Margaret Hospital in Toronto).

I would also recommend that you register on the website for the National Comprehensive Cancer Network (NCCN.org) and print out the latest treatment protocol for Anal Cancer. Become familiar with this information and print out a copy for your doc(s) also. That way you will know that they have a clear understanding of the latest treatment regime.

I'm sure your head is spinning right now and it's easy to get into informational overload. We all felt that way in the beginning. But I'm glad you are educating yourself. Get answers to your questions and if your docs don't know, then it's time to seek another opinion. My choice would definitely be Dr. Eng at MDA. I think she knows her stuff.

I wish you all the very best and hope you'll come here for support. We are here for you.

z's picture
z
Posts: 1272
Joined: May 2009

Welcome, Sorry you had to find us. Mixedperry and Martha covered it better than I ever could. I wish you the best. Just so you know there are several stage IV survivors, so just know that you can do this to0. You are young and thats a big plus. Lori

sandysp's picture
sandysp
Posts: 852
Joined: May 2011

I am still hoping you are not stage four. But we have others who have posted here who have been diagnosed stage four and are pulling through with the new protocols. You are definitely on my mind and in my prayers. Keep us informed of your treatment. Posting is therapeutic for all of us and good for helping others who may log on later exactly where you are at right now in your diagnosis. No matter what, it gets better when you have all the information in front of you and are able to make a decision with your doctors as to the best course of action and even better than that when you can begin to take action. Good luck.

cap630
Posts: 150
Joined: Jul 2011

So sorry to hear about your situation. List of questions above are best ones to ask the doctor. Know we are hear to listen...

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