New Diagnosis/Overwhelmed

[O Stoma Mia]

...Lastly, my previous post with this info appears to be lost but ...

Actually, I'm not so sure that your previous post was lost. It might have still been in the Moderator queue waiting for approval and not yet displayed on the main board.

Since you are new here with only 5 posts, your status is 'Newly Registered User', which means that all of your new posts are hidden until they undergo review and are released to the main board. You have to have a few more posts before you are promoted to Regular User status. Once you have reached Regular User status your posts appear on the main board as soon as you click on Submit.

Is this the previous post that you were referring to?
http://coloncancersupport.colonclub.com/viewtopic.php?f=1&t=59672&p=474097#p474097

[retiredteacher]

The folks here really know what they are talking about! I came here late - when diagnosed my doctors told me they didn't need to do the MRI/ultrasounds and so did not do an initial staging - they told me I didn't need an initial staging; that staging is inaccurate; that the surgery would be the same regardless; that all that really matters is if I am alive in 5 or 10 years. Found myself going into a planned surgery not knowing the stage or even how far up the tumor was. After coming here, it took awhile to digest all the information and realize my mistakes. A very good advocate for my husband two prior cancers, I realized I was being a terrible advocate for myself. Was able to change direction, find an excellent surgeon, and have had an excellent outcome - without an unnecessary ileostomy - much better than if I had stayed with my initial referrals. But none of that would have happened if I had not come here. This can seem overwhelming at the start. If you can go to the NCCN website and research your particular situation, you will be better prepared to ask questions of your medical team. As has been stated - start with the binder! Know that, while it all seems daunting at the moment, you'll be on top of everything in time. People here are VERY supportive, very experienced, and very honest. Keep asking questions and welcome, again!

[NHMike]

Second, I'm starting to freak out more because I now see things with different eyes. The weird sensation I was used to in my anus that I was told was a skin tag (by the first Rectal Surgeon who told me I had anal fissure - after a rectal exam) and also a hemorrhoid (that I keep tucking back in) by my GYN office - I'm thinking this must be the polyp (tumor? what's the difference?). It's right there around my sphinctor - and it does give me a full feeling at times. So I am thinking I am going to need a surgeon who is well-versed in sphincter saving strategies (if even possible, if this is indeed where it is) and I'm thinking I need to get this process going ASAP, given the location. I wonder if anyone here knows of any better sphincted saving surgeons.

My tumor popped out a few times and I either pulled it back in with my sphincter muscles or pushed it back in with a finger (we kept food-handling gloves in the bathroom). The tumor can give you the feeling that you need to go when you don't need to. So mine was low enough to go outside the body but it shrunk over 90% with chemotherapy and radiation. I was in a big hurry to start because I was worried about how big the thing was getting. It started shedding about two to three weeks into chemotherapy and radiation and things got better (in terms of the tumor shrinking) from there.

After chemo and radiation the anal verge was a big over five centimeters and my surgeon thinks that I should have a good outcome after reversal.

You want a board-certified CRC surgeon to do the work, ideally in a large cancer center where they do a lot of this. Here's the bio of my surgeon so it gives you something to compare prospective surgeons to: https://physiciandirectory.brighamandwo ... ery-boston

It sounds like Boston would be rather inconvenient to you and there are excellent cancer centers that are closer. The surgery wouldn't be until after your Neo-Adjuvant Chemotherapy and Radiation (6 weeks), and 5 or so weeks to recover. So it's good to get the ball rolling on a surgeon but the Radiologist and Oncologist are more important on getting started.

[Caat55]

Susan,
Traveling may need to happen to help you settle all the questions. A second opinion from both an oncologist and a colorectal surgeon is time well spent. For me the bonus was I felt better about what treatment I do get locally. The surgeon you will see maybe once before surgery, in the hospital and then again a few weeks later then its at least six months before you go back again. The most important person is the oncologist who you see at least monthly. The radiation oncologist is a big in the first part and then done.
I had a MRI and a Petscan within a week of my colonoscoy so that when I saw the oncologist and surgeon they had lots of information.
Susan