Just diagnosed with colon cancer...Need advice about finding surgeon in Northern VA

Charley13
Charley13 Member Posts: 1
edited March 2016 in Colorectal Cancer #1

Hello everyone,

I was in the hospital with anemia last weekend after some occuranced of dizziness and general fatigue and had been having stomach digestive issues. 

I had a colonoscopy this past Tuesday which revealed a "circumferential stricture at 20cm in the sigmoid colon".

Result of the biopsy was an "invasive adenocarcinoma" -  'The carcinoma is moderately differentiated and is associated with stromal desmoplasia and surrounding adenomatous mucosa with high grade dysplasia. Immunohistochemical analysis for DNA mismatch repair proteins will be performed".

 So far this is all I know. I guess the next step is to consult with a surgeon. How do I choose one? How do I go about this? What questions should I ask? How many opinions should I get? 

I have a referral from the gastroenterology center. I have a client who had colorectal surgery six years ago and recommended her surgeon and a doctor at the hospital recommended another. I am in Northern Virginia if anyone has any specific recommendations. 

 I'm just kind of overwhelmed right now. Also, how can I expect this process to go? What kind of pre-op tests should I expect, etc...

 Any help/advice would be greatly appreciated.

 Thanks!

Charley in VA

Comments

  • John23
    John23 Member Posts: 2,122 Member
    You've come to the right place!

    You've come to the right place

    Finding a great surgeon is no different than finding a great car mechanic, and even then, it's all subjective; it's all a matter of opinion. And every situation is different; your cancer and it's progress can be totally different than mine.

    Nurses can often be the best supplier of physician references since they see both the “before” and “after” effects of treatment (surgery or otherwise). They'll know who has the best batting average, and who is best known for saving people.

    You would want to seek a “colorectal” surgeon, since they specialize with the intestinal tract and more often for cancer reasons affecting the tract. A surgeon that has “rights” (is accepted at more than one hospital to perform surgery) is also better than a more limited surgeon.

    The Indiana State University (Clarian Clinic) does intestinal transplants, but it's a bit of a drive from Northern Va. They may be able to recommend a qualified colorectal surgeon in your area, however. And of course, the Sloan Kettering facility in NYC is well known for their cancer work.

    A good colorectal surgeon is usually much more objective than an Oncologist. They may make a living doing surgery, but won't tackle the job unless they feel it's necessary. An oncologist usually will recommend chemicals and radiation, not surgery, as the first line of attack.

    Although I don't always follow my own advice (regrettably), I strongly suggest you gather a few opinions from a few different surgeons that are NOT of the same group or organization. And that holds true for any physician you may require for care. Even a GP can send you into harms way with bad advice (trust me). A wrong diagnosis, good or bad, can cost you your life.

    Pre-op tests include CT scans and/or MRI scans. PET scans were developed to outline a tumor more clearly for a surgeon, but has become a neat tool for Oncological treasure hunting. The PET relies on the uptake of radioactive glucose. The assumption that a cancer cell uses more glucose than a normal cell, is the basic narrative. The downside, is that cells in the process of healing can use more glucose than surrounding cells..... and a slow growing cancer cell may be surrounded by faster growing healthy cells... Using the PET to locate cancer cells can be very profitable, if you get my drift. Unless my colorectal surgeon requests a PET for pre-surgery reasons, I would not agree to one, and even then I voice my concerns.

    What to look forward to? You want the good news first, or the bad?

    It's in your sigmoid section, that's pretty low and close to your rectum, etc.

    You may or may not end up with a colostomy, temporary or permanent.

    Abdominal surgery can (and usually does) cause adhesions and/or hernias.

    And as anyone here can tell you, there are absolutely no guarantees that after you go through everything you never dreamed of having to go through, the cancer can return. No prognosis is all that accurate; a prognosis is based on how fast the cancer is presently progressing. If therapy works to slow the progression, the times period for your departure changes. If there's little or no change, get the papers in order. It's actually always best to plan for the worst, and hope for the best. My Mother went almost 17 years past her initial prognosis (lung cancer) (never did stop smoking) (well, yeah, at the end; cremation not factored in). I was diagnosed stage 4 colon cancer in 2006. I just got through filling out the forms at our local crematorium. Wills, phone numbers, insurance forms, etc., are in order.

    No one desires to even think about such morbid things, but taking care of the details well in advance will be a real blessing if and when you become panic stricken with some new development. Doing things when you have plenty of time, and not burdened with impending feelings of doom, can seriously provide one with a better ability to properly address the health problem at hand. If you're like me, and can't chew gum and walk at the same time, my advice will come in handy. Get as much of the dribble out of your way as quickly as you can and allow the path you have to travel become less encumbered.

    Take a deep breath. You'll do fine! First, locate a couple of colorectal surgeons and get some different opinions. Ask around as you had been doing. And above all, keep moving forward / Lean Forward. This isn't the end of the world, it's just a path you didn't expect to take.

    My very best hopes and wishes for you!

    John

     

  • NewHere
    NewHere Member Posts: 1,428 Member
    Welcome

    Sorry you are here, but it is a good place to be.  John has an really good roadmap pretty well covered in his post.  The only thing I will add is try to find the experts and do not let travel dissuade you.  There is good places in the D.C. area.  I am in NY and close to Memorial Sloan Kettering.  There is no doubt in my mind that going there significantly changed my outcome.  (I had this all start for me just over a year ago, surgery last Feburary and almost a year since I started my 6 months of chemo following surgery.)

    I met with one surgeon as a courtesy more than anything when the gastro who did my colonoscopy basically said "no big deal any surgeon can do this."  The surgeon was of the same group, but my GP had already started getting me into Sloan Kettering.  When I first heard I had cancer, my immediate reaction was I was going to Sloan Kettering.  I also convinced someone else to go there after they have been through the mill and back with their cancer.  Sloan was able to help them quickly.  (They as stayed local before then an ran into a ton of issues.)

    I am not sure off the top of my head of which members of the board are from your area, but they may have some names for you.  

  • lp1964
    lp1964 Member Posts: 1,239 Member
    Dear Friend,

    You came to the right place for advise. It is natural the way you feel now and I assure you that this is the worst part of this process, the unknown. As soon you start your treatment and especially they remove the cancer you will feel much better. 

    You need to find a good surgeon and a good oncologist. If you live in a bigger city and you have options interview at least two more ideally 3 three of each. Look at their education, experience and personality then choose the one you feel more comfortable with. I like positive optimistic doctors, because I want to shoot high when it comes to saving my life. 

    Your treatment may consist of chemo and surgery depending on the staging. If there is indication the the cancer spread to the lymph nodes or other organs they usually start with chemo. If it's only local usually surgery first followed up with chemo.

    I hope I covered everything and if not just ask.

    All the best,

    Laz

  • beaumontdave
    beaumontdave Member Posts: 1,289 Member
    My tumor was 22cm into the

    My tumor was 22cm into the sigmoid section of the colon, they cut it out and resected, since it's the sideways part and can be pulled together. Among the risks are the main nerve connected to erections. You need a PET scan to stage the cancer, and if any spread exists, you'll likely do chemo after surgery. I can't recommend any doctors, since I'm in Southern California, but someone who deals with colon cancer regularly is obviously the better choice. Time may be a factor, the sooner, the better. Take someone you trust to the appointments, an advocate who will listen to what is said, ask the important questions, since you may be too stressed to think of all the stuff you need to know and ask. We all started out flustered and overwhelmed, but when you get a plan in place, you'll feel less so. Good luck, Charley, and let us know how it goes.................................Dave

  • JanJan63
    JanJan63 Member Posts: 2,478 Member
    I can't help with any

    I can't help with any suggestions as I live in Alberta, Canada. I'm sorry for the reason you're here but welcome.

    After I was diagnosed the doctor that did the colonoscopy referred me to a surgeon, I didn't get to choose. Or maybe I could have buy I had no experience with this and was pretty numb. I think I got the best surgeon I could have. I really like him and he did a good job as far as I can tell. He made me feel like he was very competent and I felt safe with him. I've met other people since then that have been to him for various reasons and a few have said they think he's arrogant. I just felt like he know what he was doing and just did it, no bs. He was never arrogant with me, just confident. My daughter was the one that dropped me off for the surgery and he got her call phone number and called her himself after the surgery was over. I really appreciated that. On the other hand my oncologist was a woman ans was kind of wishy washy and too nice and I didn't like that. I wanted compassion but I also wanted to feel confident in her and I didn't.

    Best of luck, I hope you find someone you have trust in.

    Jan