It appears you have not yet Signed Up with our community. To Sign Up for free, please click here....



Cancer: Rectal & Anal Message Board
Post New Thread   Closed Thread
LinkBack Thread Tools
Old 01-28-2005, 02:38 PM   #1
Member
(female)
 
Join Date: Jan 2005
Location: outside Orlando
Posts: 63
JJSMITH HB UserJJSMITH HB User
I have rectal cancer, but refusing surgery...please help me

On August 12, 2004, I had my first colonoscopy and dr found and removed 9 polyps, which were benign. He also found a large mass (silver dollar size) at 10 cm from the anal verge, which he disected and removed in 6 pieces. The pathology report came back "RECTUM (POLYPECTOMY): INVASIVE MODERATELY DIFFERENTIATED ADENOCARCINOMA ARISING FROM ADENOMATOUS POLYP." I also have significant melanosis coli throughout colon. The clear margin was only .5 mm.
I am a 56 yr old female. My Father had colon cancer, which he survived, but died many years later from lung cancer.
I was told by the dr that he was "99% sure that he got it all and to just have repeat colonoscopsies, CEA and CT every 3 months for 2 years." He ordered an immediate CEA, PET and CT scan, plus an endorectal sonogram, which all came back negative, with no signs of metasasis. During the last 6 months, I have had a total of 3 colonoscopies, with additional biopsies..and they have all come back negative. The original CEA, which was done 1 week after removing the mass, came back "6." The last one done in December, came back ".06."
I got very scared and went to an Oncologist. He referred me to a colorectal surgeon who, of course, insisted that I should have an immediate resection done because they are unable to stage me until they take out the lymph nodes.
Because I have had SO many different tests done, and they have all come back negative, I have refused the surgery. I have moved to FL and last week went to a cancer intitute Oncologist. He has now referred me to a colorectal surgeon....and he is also adamant about the resection surgery. I am terrified of this surgery because it is highly invasive and I've read horror stories about possible complications afterwards.
I had NO symptoms before diagnosis and none since. I have no nausea, eat like a horse, no rectal bleeding and no pain. I feel totally "normal" and since all tests have been negative, I feel like I don't need the surgery.
I am new to this message board, but I was so impressed by posts from a member named "FUDD" and would be so very relieved if this member or anyone else that has been through a similar problem could help me.
I don't want to die because I've been stupid in my choices here. Thank you in advance. I am supposed to go back to the surgeon in 1 week to make my "final" decision about this.

 
Sponsors Lightbulb
   
Old 01-28-2005, 06:34 PM   #2
Senior Member
(female)
 
Join Date: Oct 2003
Location: Vancouver, Canada
Posts: 247
West Coast Girl HB User
Re: I have rectal cancer, but refusing surgery...please help me

I know this type of surgery can sound scary but if two colorectal surgeons feel you should have the resection then that's probably what's necessary. This would be the only way to make sure all the cancer is gone by testing the lymph nodes. I had a similar situation to yours as I had only some ocassional minor rectal bleeding but otherwise felt fine and was in excellent health. My cancer was very low in the rectum so I received a temporay ileostomy as my surgeon felt he could spare me from a colostomy. Unfortunately my rectal area refused to heal so I did end up having to have a permanent colostomy. Don't let this scare you are most resections do not result in an ostomy. Both surgeries were complicated but I never experienced any major discomfort and was only in the hospital for 6 days each time. My colostomy hasn't slowed me down at all as I'm back to my regular life style of swimming, biking, scuba diving, cross country skiing and working out at the gym. I feel this is not a bad deal at all as I am free of cancer. But remember every circumstance is different and make sure your surgeon explains exactly what he intends on doing so you are fully informed before the surgery. If you feel the need, get a third opinion.

 
Old 01-28-2005, 07:00 PM   #3
Member
(female)
 
Join Date: Jan 2005
Location: outside Orlando
Posts: 63
JJSMITH HB UserJJSMITH HB User
Re: I have rectal cancer, but refusing surgery...please help me

WEST COAST GIRL:
Thank you so much for your response! I feel so "whiny" ..you've been SO brave and have been through so much. I have actually had 3 surgeons tell me that to make absolutely sure that the cancer was all removed and it has not gone into my lymph nodes, that I must have the resection. All of my records were "lost in the system" when I was diagnosed last August, so I have felt like they are all sort of "guessing" at this point and I'm terrified of this surgery for some reason. Since I have moved to FL, all of these drs are new, so maybe that is part of my fear. Again, thank you for taking the time to help me. I will post again after I see the surgeon. JJ

 
Old 01-28-2005, 08:15 PM   #4
Senior Veteran
(male)
 
Join Date: Apr 2004
Location: Northeast USA
Posts: 1,497
CancerDad HB User
Re: I have rectal cancer, but refusing surgery...please help me

JJ:

.06 is fine for a CEA. Do you smoke? Smoking drives up your CEA. But anything below 4 is good. I would only worry if your CT or CEA change. Usually if you see a surgeon, they will recommend surgery.

I don't agree with the transrectal surgery that you had, but you had it and appear to be doing well. Did you do any chemo or radiation. Did they do a transrectal ultrasound (you mention endo rectal sonogram, but don't mention what "T" stage it is) to see how deep the tumor went? Moderately diff. cells are actually pretty good-- slow growing. Did you have a PET scan to see if you had any cancer cells show up anywhere else in your body?

That's probably where I would go to first. And see an Oncologist down there, or the new surgeon you are seeing can order a PET. They now have a new PET/CT to actually hone in on "hot spots."

Let us know what the surgeon says.

Regards,
CancerDad

 
Old 01-28-2005, 08:20 PM   #5
Senior Veteran
(female)
 
Join Date: Oct 2002
Location: florida
Posts: 777
delrae4753 HB User
Re: I have rectal cancer, but refusing surgery...please help me

to JJSMITH

my brother had a rectal mass diagnosed in october with a total recum removal and a total large colon removal he has done wonderfully after 2 months he is back to work full time had no complications just a sore hinney he does have a permanent colostomy but it is something he can live a long life with we came so close to loosing him without the surgery he would be dead by now im so grateful for the wonderful team of surgeon and care takers he will live a long time dont need no chemo or radiation becuse there was no involvement with the lymph nodes and thats a blessing he hasd a very large mass iut was 4-6 cm large . please dont hesitate on having the surgery if you want to live and you can with some inconviences have this surgery think about your family... im sure there is some support team out there for you my brother is 57 and i wasnt ready to loose hime we live in tampa fl what part of the state are you in?
__________________
To live my life to its fullest and to put all my trust in God.

 
Old 01-28-2005, 08:23 PM   #6
Senior Veteran
(female)
 
Join Date: Oct 2002
Location: florida
Posts: 777
delrae4753 HB User
Re: I have rectal cancer, but refusing surgery...please help me

also most rectal cancer are diagnosed with out symptoms my brother had no symptoms no pain and just a small spot of blood 1x................you have my prayers.
__________________
To live my life to its fullest and to put all my trust in God.

 
Old 01-28-2005, 08:44 PM   #7
Senior Veteran
(male)
 
Join Date: Apr 2004
Location: Northeast USA
Posts: 1,497
CancerDad HB User
Re: I have rectal cancer, but refusing surgery...please help me

Quote:
Originally Posted by delrae4753
also most rectal cancer are diagnosed with out symptoms my brother had no symptoms no pain and just a small spot of blood 1x................you have my prayers.
Delrae:

I'm glad your brother had such a good experience with his surgery. What stage Rectal Ca was he? How many positive nodes?

I am over a year post-op and am still not back to work... I'm now 32 years old, but had MANY complications and Pain that continue. Dx stage 3C, with 6/10 positive nodes... radiation and chemo. Just goes to show you, some bounce back, and for some reason others don't so quickly.

I look forward to your response.

Regards,
CancerDad

 
Old 01-28-2005, 09:01 PM   #8
Member
(female)
 
Join Date: Jan 2005
Location: outside Orlando
Posts: 63
JJSMITH HB UserJJSMITH HB User
Re: I have rectal cancer, but refusing surgery...please help me

Quote:
Originally Posted by delrae4753
to JJSMITH

my brother had a rectal mass diagnosed in october with a total recum removal and a total large colon removal he has done wonderfully after 2 months he is back to work full time had no complications just a sore hinney he does have a permanent colostomy but it is something he can live a long life with we came so close to loosing him without the surgery he would be dead by now im so grateful for the wonderful team of surgeon and care takers he will live a long time dont need no chemo or radiation becuse there was no involvement with the lymph nodes and thats a blessing he hasd a very large mass iut was 4-6 cm large . please dont hesitate on having the surgery if you want to live and you can with some inconviences have this surgery think about your family... im sure there is some support team out there for you my brother is 57 and i wasnt ready to loose hime we live in tampa fl what part of the state are you in?
Thank you for your help. I live just outside Orlando. My dr called this afternoon and he's scheduling another PET scan. I had one just 6 days after the mass was removed and it was negative for metasasis, but I've been told that the results can not be relied on because it was too soon after the cancer was found. I am so pleased to hear about your brother and his succeess after his surgery! God bless you and your family.

 
Old 01-28-2005, 09:10 PM   #9
Member
(female)
 
Join Date: Jan 2005
Location: outside Orlando
Posts: 63
JJSMITH HB UserJJSMITH HB User
Re: I have rectal cancer, but refusing surgery...please help me

Quote:
Originally Posted by CancerDad
JJ:

.06 is fine for a CEA. Do you smoke? Smoking drives up your CEA. But anything below 4 is good. I would only worry if your CT or CEA change. Usually if you see a surgeon, they will recommend surgery.

I don't agree with the transrectal surgery that you had, but you had it and appear to be doing well. Did you do any chemo or radiation. Did they do a transrectal ultrasound (you mention endo rectal sonogram, but don't mention what "T" stage it is) to see how deep the tumor went? Moderately diff. cells are actually pretty good-- slow growing. Did you have a PET scan to see if you had any cancer cells show up anywhere else in your body?

That's probably where I would go to first. And see an Oncologist down there, or the new surgeon you are seeing can order a PET. They now have a new PET/CT to actually hone in on "hot spots."

Let us know what the surgeon says.

Regards,
CancerDad
Thanks for your reply. Yes, I do smoke. I KNOW I shouldn't, but I've been such a wreck for the past 6 months, I need to smoke more than ever. Bummer, huh? I also do not agree with the transrectal surgery, but it was done during a routine colonoscopy and I wasn't given a choice. No, no one has ever mentioned having chemo or radiation. Since I have not had the surgery..no one has actually "staged" me and claim that I can't be staged until they have done a resection and have the lymph nodes. PET scan was done right after the cancer was diagnosed and was negative. The new Oncologist that I went to see earlier this week is going to schedule another PET scan. My husband is out of town right now and I know I shouldn't, but I've spent the past 5 hours reading gory details about the open resection and I'm now terrified than ever. I will post again as soon as they tell me more.

 
Old 01-29-2005, 10:25 PM   #10
Senior Veteran
(male)
 
Join Date: Jul 2003
Location: Ontario, Canada
Posts: 778
jaydees HB User
Re: I have rectal cancer, but refusing surgery...please help me

Quote:
3 surgeons tell me that to make absolutely sure that the cancer was all removed
The operative word is "absolutely". You indeed have a choice and to a surgeon that means a choice between surgery or no surgery. Go back to the oncologist and ask about chemo regimens w/o surgery. On the other hand not having the surgery will likely mean a permanent colostomy as the mass was so low down. I have a colostomy, it's no biggee any more(3 1/2 yrs post op) but surgery is scary, no doubt about it. Also, not having surgery does mean that if there is still are cancerous cells there that its resurgence will be worse next time since it is starting within the rectal wall rather than on the inside surface. Only surgery can avoid that.

It is your choice and it is a difficult one to make.

BTW, and like you haven't heard this before, smoking is doing you no favors.

 
Old 01-30-2005, 09:23 AM   #11
Senior Veteran
(female)
 
Join Date: Oct 2002
Location: florida
Posts: 777
delrae4753 HB User
Re: I have rectal cancer, but refusing surgery...please help me

my brother was in a stage 1 no nodes were involved thanks god.
__________________
To live my life to its fullest and to put all my trust in God.

 
Old 01-30-2005, 11:12 AM   #12
Member
(female)
 
Join Date: Jan 2005
Location: outside Orlando
Posts: 63
JJSMITH HB UserJJSMITH HB User
Re: I have rectal cancer, but refusing surgery...please help me

Quote:
Originally Posted by delrae4753
also most rectal cancer are diagnosed with out symptoms my brother had no symptoms no pain and just a small spot of blood 1x................you have my prayers.
Your brother was SO lucky...but he DID opt to have they surgery to make sure it wasn't in the nodes, right?

 
Old 01-30-2005, 03:22 PM   #13
Senior Veteran
(female)
 
Join Date: Oct 2002
Location: florida
Posts: 777
delrae4753 HB User
Re: I have rectal cancer, but refusing surgery...please help me

his mass was so large that there was no other choice either he had the surgery or face death lucky for him it wasnt in the nodes but the drs ecpected worse. he was having bleeing in the rectum also
__________________
To live my life to its fullest and to put all my trust in God.

 
Old 01-30-2005, 04:39 PM   #14
Senior Veteran
(male)
 
Join Date: Apr 2004
Location: Northeast USA
Posts: 1,497
CancerDad HB User
Re: I have rectal cancer, but refusing surgery...please help me

JJ:
Delrae's brother had a stage 1 lesion, which means it did NOT penetrate the wall. That's why I was inquiring about the "T" stage during your transrectal ultrasound. That will give you an idea how deep the tumor was. This is unlikely that you received one given the fact that the GI removed it via colonoscope. If the GI was able to remove it transrectally, then he/she must have believed that it did not infiltrate the wall, where it can spread to nodes. I agree with JD's comments... talk to the oncologist. Get the GI reports and go from there. Ususally a good GI will not attempt to remove it if imbedded in the wall. He/she will only biopsy.

Your CEA is .06 b/c you are still smoking/ I would keep an eye on this and continue with scans regularly. If ANYTHING is suspicious, get the resection and/or chemo/radiation. Or, consider chemo/radiation now, which will kill any remaining cancer cells. I personally would NOT go through having all your nodes around the lesion removed now... although they could probably do it laparoscopically.

Those of us who have had full surgeries have had tumors that are imbedded in the walls, and they are uncertain of spread. Therefore, the rectum must be resected, and nodes removed, and likely radiation, chemo, etc. Delrae's brother is a rare case in which they caught the cancer VERY early. Stage 1 has a great prognosis. Like I said before, I probably would have opted for a resection if your GI didn't remove the tumor via colonoscope. However, if I were you, I would leave well enough alone, and continue monitoring very closely as you have been.

Best of Luck, and keep us posted with additional questions, and updates.

Regards,
CancerDad

PS I Also agree with Jadees-- I know it's hard, but put out those cigs!

 
Old 01-30-2005, 05:35 PM   #15
Member
(female)
 
Join Date: Jan 2005
Location: outside Orlando
Posts: 63
JJSMITH HB UserJJSMITH HB User
Re: I have rectal cancer, but refusing surgery...please help me

You're so right! I just checked the doctors report on the ultrasound, and there is no mention of a "T" stage. Actually, the dr didn't tell me anything except that it was normal, but still advised a resection. One month after the mass was removed, I had a second colonoscopy with a different surgeon and the operative report says: ..."This patient had a large sessile mass removed in piece meal a month ago. CAT scans and other tests have been negative for any recurrence, but as I look at the pictures and evaluate this, this is a sessile lesion that was removed and the path report shows moderately diffferentiated invasive adenocarcinoma with tumor extension within less than .5 mm of distal surgical margin of resection. This makes me concerned and very worried that this needs to be resected." It THRILLED me to read that you agreed that I should leave well enough alone and continuing monitoring very closely! I will continue to push the drs for every test that is available on a constant basis. Thank you

 
Closed Thread

Similar Threads
Thread Thread Starter Board Replies Last Post
Rectal Cancer spread to Lungs Ronnied Cancer: Colon 8 01-25-2009 11:36 AM
chemo-radiation before rectal surgery?? susie24 Cancer: Colon 11 10-28-2007 06:26 PM
update and rectal surgery Jeni61 Cancer: Colon 20 09-29-2006 08:31 AM
27, diagnosed with rectal cancer cinda Cancer: Colon 20 07-27-2005 09:49 PM
help / bright red rectal bleeding / what is it? skr Digestive Disorders 2 04-23-2004 07:42 AM




Thread Tools

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is Off
HTML code is Off
Trackbacks are Off
Pingbacks are Off
Refbacks are Off




Sign Up Today!

Ask our community of thousands of members your health questions, and learn from others experiences. Join the conversation!

I want my free account

All times are GMT -7. The time now is 07:44 PM.



Site owned and operated by HealthBoards.comô
Terms of Use © 1998-2014 HealthBoards.comô All rights reserved.
Do not copy or redistribute in any form!