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Help Please..Distance of Tumor from Rectum..Surgery Next Week

carrieh's picture
carrieh
Posts: 146
Joined: May 2012

Hi everyone,

I'm really new here and everything is happening fast. Overwhelmed today. Long story short..(If anyone has any knowledge about this; pretty please reply)...I'm having colon resection in a week..the tumor is (on surgeons report from flex sig) 14 cm from anal verge. He said he's planning to resection and sew me back together/ and no bag expected...however a temp one could be possible if the tumor is too low down once they get inside. He also said they normally cut 5 cm from tumor on either side to get any affected tissue out. I of course asked, "Isn't that why you measured precisely?" He said yes..so why is a bag a "possibility" if he isn't expecting to do it?

How much of the lower colon is needed/ must be left to avoid a bag (colestomy or collectomy..im not sure what the difference is..aplogize). Has anyone had a tumor around this location? If so, would you mind sharing please?

Also, my uterus doesn't move. Most peoples do. It's stuck. Other surgeon said it could be fibroids, adhesions, or tumor has grown from colon to uterus or vice versa. It will also be removed of course..but aren't there any tests they can do to see why it's stuck before next week? I had myself prepared for anything mentally (that I knew might happen) felt happy and optimistic despite everything..total colon removal (previous plan), scars, pain, something going wrong like infection...and now..wham..new scary stuff! if its the tumor does that mean it's probably metastisized..? Can they be that big and not have gone to liver and lungs?

I don't mean to only post when I have a question; I just feel like I don't have a lot to offer in advice to others because I haven't been fighting very long yet. Thank you for reading and responses...
You are all so kind and brave
Carrie

danker
Posts: 1270
Joined: Apr 2012

My tumor was from 10 to 15cms from anus before chemo and radiation. Was given a 6 weeek rest between radiation and resection. Was given an iliostomy to let colon rest. After 7 weeks with a bag, had iliostomy reverseed(take down) . The reconnection was about 6 cms
from the anus. Acquired a fistula which healed itself fome the inside out. A year after the resection, a colonoscopy showed I was NED
(no evidence of desease) It is now another year later living a normal life. Still see Drs for tests,scans,etc. But life is good. Just celebrated my 80th birthday. Don't be afraid. You too can get through it all, just take it a day at a time. Best of luck to you. Hope this helped!!

pete43lost_at_sea's picture
pete43lost_at_sea
Posts: 3908
Joined: Nov 2010

its a big op, but we all bounce back pretty well.

it is hard work after the op, put your questions back to your surgeon.

he is covering his butt, because when they open you up they might find something unexpected, that cts / mri don't show.

smile , you are taking a large step on the path to better health. keep asking lots of questions, its the best way to learn, you will give yourself the best shot at a cure.

hugs,
pete

Dyanclark's picture
Dyanclark
Posts: 296
Joined: Apr 2012

PETE I read your post last week that your scans are all clear but your CEA is high. Are you doing chemo at this time. My husband just finished about 4 months of chemo and his scans were clean when his CEA was rising. I felt they should have started chemo last year. Well now his CEA is 5 down from 46 and again scans are clear. These scans are just not accurate in my opinion. His cancer finally showed up in two lymph nodes. It was his surgeon who fond the swollen nodes nobody else was seeing them.

steved
Posts: 835
Joined: Apr 2004

At this stage in your journey there are so many major decisions and events happening it is hard to keep up and having some basic knowledge helps you feel at least sltightly in control of things.

With the issue of stoma etc for the tumour the distance your tmour is from the anus will determine whether the bowel can be rejoined (anastomosed). IF they need to cut out any of the last 5 cm of the rectum then rejoining is hard to do at all and some end up with a permanent stoma (the bowel is openined onto the stomach wall and empties into a bag- an ileostomy is small bowel opening and a colostomy is large bowel opening). This is unlikely for you. It is likely they will be able to rejoin the bowel for you but it may be that they want to give the rejoining a chance to heal without poo passing over it in which case they do a temporary bag. I had this for a year postop op while it healed and I had 6 months post op chemo which is common in rectal cancer. I then had a reversal and plumbing is fairly normal now. This technique makes it less likely that you will have complications related to the rejoining.

The scans they have done are good but not perfect. They will know more when they get int ehre, hence the reason they can't be 100% certin what will be best for you till they are inthere and they are telling you all the possibilities.

As for the uterus I'm less sure. The uterus sits between your rectum and your baldder at the front. Ehnce cancer can spread through the wall of the bowel and affect the uterus. It can do this without metastsising to other parts of the body. An MRI scan should have shown this. However, it may also become fixed because of a wide range of other causes. Talk to your team and put your questions to them.

Do some reading of basic sites and try and understand a ;little more about your illness and treatment- it might give you a bit more strength and feeling of being in control at a time when you undoubtably feel out of control.

Hope this is helpful,
steve

herdizziness's picture
herdizziness
Posts: 3642
Joined: Apr 2010

They tell you about the bag just in case things aren't exactly where it shows on scan or in a more difficult place. They told me the same thing and I had the surgery and no bag, when I woke up that's the first thing I felt for. About that point though I had already been accepting of it, if it meant I could live longer, but I was very happy I didn't have to. I believe they have to tell you about the possibility of a bag to cover their butts is all, I wouldn't worry too much about it, if they told you it wasn't a sure thing. My tumor actually ended up being on the opposite side that my scans had shown it as being, even my pain had been on the wrong side, imagine my and their surprise when they did the colonoscopy a week before surgery and discovered it on the left side and not the right side. As a matter of fact I just learned a few weeks ago that it had actually grown outside the colon, my surgeons never mentioned it, nor did my onc (of course he wasn't there for the surgery and didn't do the surgery, I think he probably thought the surgeons told me)I only learned it from the doc that's supposed to do my next colonoscopy, the things your learn later. However, am NED at moment, 2 1/2 years out from diagnosis of Stage IV.
Best of luck on your surgery, sending good vibes your way, and I'm sure everything will be fine.
Winter Marie

danker
Posts: 1270
Joined: Apr 2012

I too am 2 1/2 years out from.dx., and also currently NED. Being 80 I expect to live to 90. LOL May you also make it to that great age!!!

Doc_Hawk's picture
Doc_Hawk
Posts: 685
Joined: Jan 2012

Everyone is different in this fight, so it's really hard to answer your questions without knowing more. Have you had radiation therapy? When I was first diagnosed, the tumor was so large that it was protruding outside of the anus. I actually thought that it was a hemorrhoid. Because of how low down it was, my surgeon told me that there was no way I was coming out of this without a bag. He did advise radiation first so that we could shrink down the tumor to minimize the amount of tissue that would need to be removed. After six weeks of radiation, the tumor had shrunk down to the size of a small pea and no surgery was necessary. Chemo has taken care of what was left and now we're treating the tumors that spread to my lung (now all gone) and my liver. If you haven't had radiation yet, I would suggest that you speak with your surgeon and onc about taking that route first.

Good luck and God Bless

Doc

abrub's picture
abrub
Posts: 2146
Joined: Mar 2010

Just to let you know they resected me in 3 places (sigmoid, cecum, ileum) and I awoke intact - never had a bag (tho I had an extended ileus.) My tumor (appendiceal in origin) was found as a met surrounding my ovary, so yes, tumors can escape locally. However, I had no mets to the liver and/or lungs. My mets were all "touched" mets; not spread systemically through the lymphatic or blood systems.

As others have said, they do have to warn you of all the possibilities (tho I was assured I wouldn't need a resection - when the surgeon got in, he decided otherwise, because of small bits of tumor that hadn't shown on pre-op scans.) My large tumors were removed during my "routine" hysterectomy, during which the cancer was initially found. It was a total surprise.

Catch your breath. It won't be easy, but somehow, we do get through. I still can't believe all that I went through to become cancer-free(?). Yes, I had unexpected mets, unexpected resection, ileus, infections, pneumonia, and a few other complications. It was hell, but here I am, back to fully living and enjoying life.

Take care,
Alice

Helen321's picture
Helen321
Posts: 1424
Joined: May 2012

Hi Carrie, I'm rectal cancer so I don't know about colon. I'm fairly new too and what I've figured out is doctors must tell you worst case scenario. Each and every time. It's scary to hear but they're covering themselves in case they get inside and see something they couldn't see on a test or scan. Imagine he didn't tell you you could have to get a bag and you woke up with one. Also one of my doctors said one measurement, the other said another. So it has to be a wait until you get inside and then you can be exact thing. Otherwise they both would have come up with the exact same measurements. I have panicked each and every time I talk to my doctor. Then I realize he's just telling me worse case scenario because he has to. The days are getting shorter and shorter that I panic. Then it starts over with the next visit. When the doctor found out I was having anxiety, last visit he actually cut me a break and said I'm required to tell you worst case, you are not worst case scenario. Do not panic. That being said . . if you were worst case we would . . . . but you're not! so we won't have to do any of that. That was a relief to hear him say although I still secretly panicked slightly.

As for the uterus. You didn't say if you went to the GYN onc, you said other surgeon. Definitely worth a visit before next week if you haven't. My doctor told me that parts of the body like ovaries, have to be seen from the inside during surgery but the uterus is usually accessible for testing without surgery so it's worth the ask to see if they can tell you what's going on before hand. Maybe the way the tumors positioned they have to wait until they get in there. Only way to find out is to ask. I've called my doctor's office every time I think of an important question. He has a nurse to answer basics and he fields any bigger ones. Doctors only do so much, you have to do the rest. Also if you have insurance and can get a PET scan, that will give you a great sense of relief about the rest of your body. Suddenly we all have cancer all over our bodies. Every ache, pain and sign we can think of turns into cancer. I went for mine and it gave me such a great peace of mind to deal with what is actually present, not with what might be.

golf_gal's picture
golf_gal
Posts: 69
Joined: Dec 2011

Carrie, its hard to relax but try. I went for screening colonoscopy and they found polyp in rectum, which turned out cancerous. Off I went to Moffitt Cancer Center for a rejection because margins were only .5mm. I was told the same re bag. They were able to operate on me through anus. I think if it were me, I would find a good cancer center and get a second opinion since you have other issues. Moffitt is 7hours from me, but I was in great hands. I had met to sigmoid lymph node 2 years later. That op was through ab. I did chemo for three mos, then six weeks later had op, waited six weeks another three mos of chemo. Get all the facts. Read all you can get your hands on. I, like doc would think pet would have shown cancer in uterus, hence my suggestion to get second opinion. Keep us posted....we all truly care.

golf_gal's picture
golf_gal
Posts: 69
Joined: Dec 2011

Did they do a biopsy? If so, was it adenocarcinoma? I'm not up on uterine cancer,
but I haven't heard of many gals who have had uterine cancer spread to rectum. I might be out of the loop, just haven't seen much of that.

Momof2plusteentwins's picture
Momof2plusteentwins
Posts: 508
Joined: May 2012

My surgeon told me it looked good for reattaching the rectum and no bag but the final decision would be when he opened me up. I am 5 days post op in hospital bed now - no bag. Surgery went good, had rectal tumor out, gallbladder out and liver tumor out. Before surgery I had 5 weeks of chemo/radiation that my surgeon said shrunk the tumor tremendously. Which helped with surgery and with not having bag. Before radiation my rectal tumor was so large my oncologist and surgeon were worried about total blockage. Good luck and remember docs have to tell you about all possibilities.
Sandy

steved
Posts: 835
Joined: Apr 2004

To be up and posting on day 5 is a good sign after such major operation. Good news that the operation went well. Get information on any lymph node involvement and make sure you discuss what treatments should be considered once you have recovered fromt eh operation. It is the treatments you have now- that preop chemoradiotherapy, a good op and possibly post op chemo if they think it is right- that will give you the best chance of remaining clear of this beast.

Your attitude sounds positive too and that will also caryy huge a way on this journey. Just remember it is long one- you have done that bit that feels like a sprint at the start where a huge amount happens quickly. Now staying well for longer term is the focus forward.

Keep us posted and keep you spirits healthy.

steve

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