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  • Surgery Date: Tell me what you think about this please

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    Old 03-09-2006, 11:23 AM   #1
    christy217
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    Surgery Date: Tell me what you think about this please

    Hello All,

    Just to refresh your memory and sorry if this is a broken record, I am 29, newly diagnosed a week after I turned 29. Started having symptoms of anemia the beg of Feb, had to have 2 blood transfusions and now am on constant iron, I have to go get iron, fluids and procrit shots every week now because of the constant blood loss and iron def., I was diagnosed with an adneocarcioma in the cecum, 3 cm, well to moderately differentiated. My CEA was .2 on 2/21 when they actually found out it was cancer through colonscopy, but didn't tell me until 2/23, the path wasn't back until 2/24, but they told me a day earlier, which I still don't know why they couldn't tell me on 2/21, I was awake and aware for them to ask me which surgeon I wanted to go to, that is with the local doctors down here.

    I took it upon myself to find a board certified by the ACS in Colon Rectal surgery in the DC area, I live in Southern Maryland. I found a doc at WHC, he is voted among the top 100 docs in the DC area, and he and his partner were the only two listed in his field, he's been in practice since 1973 and is the director of the colon rectal surgery department. I met with him on 2/28 for a surgical consult. We discussed my wanting to get this out as soon as possible, he stated possibly the week of the 13th, he stipulated he wanted me to see a hematologist and medical oncologist prior to having surgery and we both discussed my desire to have a PetScan prior to surgery to get a staging if possible and baseline uptake, the docs down here wouldn't do that, he and I felt it necessary though, that's one thing I liked about him, and the fact that he specializes and spent 2 hours with me during the consult, he also stated that cancer patients should have surgery, if deemed necessary within a month of diagnosis, I was diagnosed on 2/23. So I've done my homework, I have the petscan next monday and the other appt on Tuesday. I called the DC surgeon's office, which I haven't been able to get through since the appt, I called on 3/2, 3/3 and 3/6, then on 3/8, they told me they had already scheduled the PetScan up there at DC, I told them no, if it was fine with the doc, I'd rather have it done locally so I wouldn't have to waste a trip, they agreed, however, they didn't fax the order to the place like they said they would, then she goes on to say that they've had me scheduled for surgery and the scan and sent info to me in the mail, I must not have received it yet, this was on 3/8, I didn't ask her when she sent it but then she told me my surgery date was for 3/27! I was appauled, I told her I was VERY eager to get this out before it spreads through the entire lining of the colon, so far my ABD/Pelvic/Chest CT are clear for mets, but I don't know if any lymph nodes are involved and won't know that until surgery. The docs down here have the urgency and wanted me to have surgery the week of 2/27, however, they don't have the expertise, and that I believe is what cost my mom her life in battling colon cancer, so that is why I chose to go to DC.

    The DC doc thinks I have FAP, because my fam hx, my mom diagnosed at 46 and died at 51, her brother diag. at 46 and died at 48, two weeks after she did, her father died of it, and her younger sister had ovarian and uterine ca, at 35 and died, her older two sisters have had lung and colon, so far the only one without it is the oldest sibling. Therefore, as you can see I HAVE AN urgency to get this out. My cancer is in the same spot my uncles was, and he had symptoms like I do, and died within 2 years. My surgery is going to be a whole collectomy of the large intestine, they will ressect the ileum from the small intestine and connect it to my rectum, he stated I have a 5-10% chance of it coming back in the rectum, if it does I have two other surgical options, full rectum removal and an illeostomy or a partial and a j-pouch internal.

    I feel I am at my wits end, I don't know what to do, I really didn't think I would be two months into this before a surgery date and am freaking out, I really thought I would be having surgery two weeks earlier, I really don't know what to think or do. I just hope I get some answers on Monday once I have the PetScan. They think since the low CEA that I don't have it in my bloodstream yet, so I am hoping that it is still low, I think when I go to get my iron on Wednesday, 3/15 I will ask them to run another CEA.

    What would you do if you were me? Would you sit tight and wait for the 3/27, or would you search for another surgeon? I can't help thinking that while I am waiting another three weeks for surgery, it could be spreading to my lymph nodes. BTW, I called back a second time and asked to speak with the surgeon, and the nurse said she'd have him call me back, and he told her he didn't feel the need to move my surgery up at the moment, she stated if I wanted to call him back I could to talk with him, I haven't done that, but thought about putting my concerns in writing and faxing them, and possibly getting my docs down here to put the push on him.

    Sorry for the novel and the rant

     
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    Old 03-09-2006, 11:58 AM   #2
    hiswife1
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    Re: Surgery Date: Tell me what you think about this please

    The first thing I feel you should be sure of is "Do you feel comfortable with the surgeon and think he knows what he is doing?" If the answer is yes, then that would help you feel better about some of the other questions. If you were diagnosed 2/23 and they do surgery 3/27, that's just a little over a month. (I know, it seems like an eternity!) From the date of my husbands diagnosis to surgery was 1 month and 2 days. I didn't think the time would ever get there and this time he has had to wait for 2 months because of the Avastin to have surgery, so I know how you feel.

    Good luck and I will keep you in my prayers. dee

     
    Old 03-09-2006, 02:07 PM   #3
    cinda
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    Re: Surgery Date: Tell me what you think about this please

    You have rectal cancer, right? Did they do a sonogram for preliminary staging purposes? I would be okay with waiting, but your family history and experience with this is different than mine, so your response is of course going to be different. I waited a lot through this process to get things done-- I waited to start chemo so I could do fertility treatments (~2 months. diagnosed in june, fertility in july and august ), I waited for surgery to do neo-adjuctive chemo and radiation (uh, started in late august, finished in...the begining of october). I waited for my body to heal from radiation so I was ready for surgery (in November). But I also felt like I was fighting it off for most of that time. If that's not how you feel, then talk to your doctor. See why he doesn't feel earlier surgery is necessary, explain why you're not comfortable waiting.

    Good luck.

     
    Old 03-09-2006, 08:44 PM   #4
    CancerDad
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    Re: Surgery Date: Tell me what you think about this please

    Christy:
    With a well to moderately well differentiated adenocarcinoma, you DO have time to think things over. This is the BEST kind of colorectal cancer to have, if you can have a best!

    If I were you, I would NOT go ahead with a full colectomy until my bloodwork for genetic testing came back positive.

    Colorectal tumors are very slow growing and usually not very agressive... especially with the histology of yours being well differentiated.

    I know your head is spinning right now, but PLEASE get another opinion. Get the genetic testing NOW so that you don't have to wait to long for the results. When I was counseled, the wait for genetic results was 3 months. Where you are, it may be MUCH quicker and worth while. I would NOT want to have my entire large intestine removed un-necessarilly. Especially with a 0.2 (normal level CEA). Radiation is out of the question due to it being in the cecum... they only do radiation for rectal cancer... seeing that you have a lesion in your cecum, that's right at the junction between the large and small intestine. It will be a BIG change for you having NO large intestine... easy dehydration, electrolyte imbalance, significant urgency to use the bathroom, etc. Not that you won't have these problems by removing a section, but it will be SO much less severe. And the notion is to try to remove ALL the cancer while maintaining as much normalcy as possible... unless you have positive genetic factors in which case one could argue that you should have your entire Large intestine removed. Realize though, unless necessary, this is MAJOR to remove your entire large intestine.

    People hear the "C" word and freak out and just want it gone. I know you have experience with your Mom and all, but you MIGHT NOT have genetic mutations. And to remove everything when all you may need is a small resection would be a shame. Remember, you HAVE TIME... it's NOT going to go to your nodes in a matter of a couple weeks with a well differentiated, and 0.2 CEA. I know this is all very scary and difficult. Slow down, get another opinion and do genetic testing ASAP.

    Food for thought. I wish you the best.

    BTW FAP patients usually have literally hundreds of polyps. HNPCC patients usually have less than 5. If you were to have a genetic factor at play, it's most likely HNPCC (Hereditary non-polyposis colorectal cancer). However both genetic factors usually present in the right colon with poorly differentiated cells. You have it in the right colon, but NOT Poorly differentiated cells, which would make me even more suspicious as to whether you have genetic factors... despite the coincidence of family history.

    Fondly,
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    Last edited by CancerDad; 03-09-2006 at 09:09 PM.

     
    Old 03-10-2006, 06:20 AM   #5
    sammypt
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    Re: Surgery Date: Tell me what you think about this please

    Christy, I have responded to your posts a few times, I had the same urgency as soon as you know there's something wrong, you want it out ASAP. I understand that but what Cancerdad said is true, it is slow growing and does give you some time to reflect and make educated decisions. I live in Virginia (the northern part close to West Virginia). I ended up having my surgery at UVA with a colorectal specialist, and I had to wait a few extra weeks, but he was excellent, I don't know how far UVA is for you but it was a great team approach and they were very thorough. Good luck.

     
    Old 03-10-2006, 08:43 AM   #6
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    Re: Surgery Date: Tell me what you think about this please

    Christy, my cancer was in the cecum too, also well to moderately differentiated. I went for genetic testing due to family history, and it can be a very long process. I went to MSKCC in August, they are certain it is HNPCC cause the tissue block tested 5/5 high MSI microsatellite instability, (which is considered a 90+% positive indicator for HNPCC) but are still testing it for the various genetic mutations. Sometimes a specific mutation can be located, othertimes it can't cause it hasn't been discovered yet, but you can still be HNPCC. There is a woman on the HNPCC board that also went for testing, nothing specific was found, yet 3 or 4 out of 5 sisters all developed colon cancer and she is considered to have HNPCC. Another woman on a different CC board, tested positive for HNPCC and has been through 2 colon cancers, ovarian, endometrial and breast cancers. She has not had a total colectomy and it is twelve years since her last cancer and she is doing well.

    Having a total colectomy is one of the preventative recommendations for those with HNPCC, as is close observation, with yearly colonoscopies. I have opted for the yearly colonoscopy. It should still detect a metachronous (second colon cancer) while still in the polyp stage. Even though HNPCC colon cancer develops much more quickly than sporadic ones do, a yearly colonoscopy should be adequate. I had a right hemicolectomy with gall bladder and appendix removal. My bowel function quickly returned to normal.

    Good Luck on whatever you decide to do.
    Leslie

    Last edited by LESLIETOO; 03-10-2006 at 08:45 AM.

     
    Old 03-10-2006, 09:52 AM   #7
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    Re: Surgery Date: Tell me what you think about this please

    Thank you all for your replies you've given me some more food for thought, , I don't know if that is a good thing or bad with how neurotic I can be, the surgeon recommending the whole collectomy, stated he thought I had FAP, but I agree with CancerDad and you, I feel as though I really don't fit that critieria and I am the HNPCC type if anything. This is the first polyp, a sessile one at that, that I've ever had.

    While, yes, this is well to moderately differientiated, and not a rapid growing cancer, the doc thinks it could have taken years to develop, I beg to differ, because my last colonscopy in Nov 2003 was clear, that was strictly done as a follow up one, and not for any other reason. This new onset started in Feb with me being severly anemic, I went and got all my CBCs from previous doctor visits and other consulting docs, like my neurologist, and my H&H started going down around September of last year, so therefore, even though EVERYONE states this is a slow growing cancer, and I know from what I read it is, HOWEVER the cancer is causing the anemia because the polyp is bleeding, and every week until surgery I have to get blood, iron, and fluids. I truly think and feel from losing the loved ones I have to this dreaded disease that you can only find out so much about certain things, even though you might know it is this type or that type, you don't know how it will affect that person, in that body, you know what I mean? What might be a slower growing deal in someone else, might not be in me.

    I don't mean to sound harsh, so I hope I don't come off that way. I know I am very blessed to found it at such an early stage, and although I won't know until after surgery, it probably has not spread to any of my lymph nodes, so I realize what a blessing it truly is, to be at the stage I am at.

    Genetic testing and counseling, the doctor did recommend I look into this, if I wanted to, however, my insurance does not pay for anything dealing with genetics, so it would be all out of pocket, then it would the additional time in between. The thing I worry about, is this, the pandoras box I'd be opening with getting genetic testing done, meaning now I know I carry this gene mutation, so do I have to disclose that to every health insurance carrier, I apply for coverage with, do I have to disclose it to life insurance that I apply for, etc., with HPNCC, I'd be more prone to other types of cancers, and some health insurance companies could deny me coverage, I know now that with life insurance, the only I have is through my job, that no one would touch me for 2-5 years after I am cancer free. So it's a lot to think about, as is, the whole collectomy.

    I know this surgery will be life changing and altering, and not just for the first 8 weeks, but for my entire life afterwards, I will probably never have normal bowel movements again, etc., but if I don't have a colon for it to come back into then it's just the rectum, and I can deal with 15 cm more than 2-4 feet of possible colon to worry about. I know in my heart of hearts that this is going to come back if I just get a ressection. I will worry everyday of whether or not it's back, every other year my mother's came back. I feel by having the whole collectomy done, which now 3 other doctors have advised me of, that it's my best option to avoid reoccurance. I am going to see if there are any docs at John Hopkins too, specializing in Colon Rectal Surgery and get another opinion, just for piece of mind.

    Thanks again for all your replies I appreciate them.

     
    Old 03-10-2006, 10:47 AM   #8
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    Re: Surgery Date: Tell me what you think about this please

    Yes, genetic testing is expensive. Luckily my insurance is paying for it. So far the tab is up to $2,000 and the meter is still running. As far as telling your health insurance if you have HNPCC, if you have paid for the testing yourself the results are kept private and not revealed even to your other physicians without your signed permission. No one but you and the genetic counselor need know the results of testing.

    It's possible that the polyp was already there during your last colonoscopy prior to the most recent colonoscopy discovering it and was considerably smaller and missed then. Since sessile polyps are by definition flat, they are much harder to detect than the ones on stalks. Also, it could have been hidden in a fold or covered if the cleansing was less than ideal.

    I agree that if your mother's cancer came back every other year, it might make sense to have a total colectomy or you could wait until the first recurrence, which may or may not happen to you, and then get everything out.

    Leslie

    Last edited by LESLIETOO; 03-10-2006 at 10:51 AM.

     
    Old 03-10-2006, 12:13 PM   #9
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    Re: Surgery Date: Tell me what you think about this please

    Thanks LeslieTOO, can you tell me what where the main things your genetic counselor pointed out? If you had to do it over again would you? Thanks for your replies I appreciate your input.

     
    Old 03-11-2006, 07:07 PM   #10
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    Re: Surgery Date: Tell me what you think about this please

    The recommendations included:

    Colon: Annual colonoscopies for family members beginning at age 25.

    Stomach & Pancreas: Upper endoscopy including duodenoscopy at least every 4 years beginning at age 30-35. If adenomas are found, upper endoscopy including duodensocopy. Screening for pancreatic cancer is investigational and has not been demonstrated to reduce mortaility.

    Gynecologic: women who have intact uterus and/or ovaries should undergo screening with transvaginal ultrasonography and CA-125 measurement every 6 months and endometrial sampling annually, beginning by age 30.

    Urinary Tract: Urinary tract screening with urine cytology and renal ultrasound every 1-2 years starting at 30-35 optional if no family history that includes urinary tract cancers which can be part of HNPCC.

     
    Old 03-12-2006, 06:57 PM   #11
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    Re: Surgery Date: Tell me what you think about this please

    Thanks so much for this very useful information

     
    Old 03-13-2006, 05:56 PM   #12
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    Re: Surgery Date: Tell me what you think about this please

    Hi Christy. I was just thinking about you and how your PET scan went. I hope all is O.K.
    Rachel

     
    Old 03-14-2006, 11:29 AM   #13
    cinda
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    Re: Surgery Date: Tell me what you think about this please

    i had genetic counciling done: I haven't sent in the stuff to have the blood tests and biopsy analyzed yet. During the counciling (also at mskcc), I asked if the genetic testing would affect my health insurance. They said, while I should try hard not to let my health insurance lapse, so far there has not been any record "genetic discrimination" of people being denyed or dropped from insurance.

     
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