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is surgery the only way?

Burnsy64's picture
Burnsy64
Posts: 6
Joined: May 2017

I am new here.  I had a colonoscopy at the end of March.  The surgeon took a polyp off and told me to come back in 3 years.  Next thing I know my Dr. Office called and said they want to see me.  On May 9th I was told I have rectal cancer.  I had an MRI and it was in conclusive.  My CEA was 7.  I had a CT scan on 24th.  Waiting for the results to see if it spread.  The surgeon tells me I need to have a resection done.  I would have to have a bag for 3 months.  He said hopefully it hasnt spread and I wont need chemo or radiation.  I am not sure about the surgery.  Is it the only way to go?  I am a care aid and I have to change peoples ostomy bags.  It makes me sick.  I do not want one of those.  I am having a hard time wrapping my head around the thought that I have cancer.  It is really scary.  My Dad died of small cell lung cancer 8 years ago at the age of 66.  He is on my mind a lot.  The MRI didnt pick anything up, but surgeon says CEA levels say I still have cancer.  I am not sure what to do.

Trubrit's picture
Trubrit
Posts: 4857
Joined: Jan 2013

I would say, if in doubt, get a second and maybe third opinion.  It is a big decision, and you need to feel comfortable with it and not look back and think 'What if?'

Another, more revealing test is a PET scan. Insurances are not keen on covering them, but at the end of the day, if its going to show more than the CT scan, then its worth fighting with them. 

Hold on for the CT results and go from there.  

Do you have an Oncologist? He would be the one to help your decide on treatment options. Surgery, chemo. Chemo, surgery. Wait and see. These are all options offered depending on what they see on the scans. 

Being diagnosed is terrible. Its a shock. It takes time to digest and come to terms with. Once you get more information and then a plan, your emotions will settle. It will be your new normal. 

I wish you luck.   We are here for you as you start this journey.  

Tru

Burnsy64's picture
Burnsy64
Posts: 6
Joined: May 2017

Thank you.  I should know tomorrow CT results.  So far all I have had is a surgeon, no oncologist yet. I think we only have one here..  You are right it is definitely a shock.  The surgeon says the bag would be temporary.  I am worried about being off work so long.  Thank you for your support.

Woodytele
Posts: 163
Joined: Apr 2017

i had a resection done, and told the surgeon to do whatever is necessary to AVOID the bag.  He said it's actually easier FOR Him, to do the bag.  I insisted to please no go that route.  Luckily I didn't get one.   It sometimes depends on where the tumor is located, how much colon they have to work with etc...

I would get another opinion.

traci43's picture
traci43
Posts: 775
Joined: Jul 2007

To add to what Trubrit said.  A CT scan shows if there is a mass.  Aa PET Scan uses radioactive sugar and looks for rapid uptake on the premise that a cancer tumor will take it up more quickly that surrounding tissue.  Just recently my surgeon thought I had an obstructions and multiple CT scans showed no tumor.  At the last minute, literally a day before surgery, he scheduled a PET Scan which revealed two tumors.  Surgery was postponed a week pending the results of the PET Scan, and I'm glad they did.  Your surgeon should have as much info as possible going in so they know what they are faced with.  Mu surgeon was so concerned about missing the tumors on the CT scan, he even went back post-surgery to review them and couldn't find them.  They were pretty small only and inch or so.

BTW, three years ago I had a tumor removed near my rectum and my surgeon was against post-surgery radiation, it's not a given and neither is a bag.  It's all based on where tumors are located and what stage you're at.  Good luck to you, I hope you get that second opinion and a PET Scan!  Traci

Burnsy64's picture
Burnsy64
Posts: 6
Joined: May 2017

In order to get a PET scan I would have to go to Vancouver BC....its a 7 hour drive from here and I think the wait to get one is long....I had an MRI which didnt show even where the tumor was.....hopefully i get CT scan results tomorrow

 

JanJan63's picture
JanJan63
Posts: 2482
Joined: Sep 2014

They say that surgery is the first and best way to treat cancer. Anything else is secondary. I had the bag done- illeostomy- before my surgery because the tumour was so big that he was worried it would completely block me before he could do the surgery. I still have it over three years later. I can have it reversed and am on the waiting list for it but I'm not going to get rid of it.

A CEA of 7 is still within normal parameters. A person without any cancer can have up to about 10 depending on other factors. A smoker can have low teens and not have cancer. And you can have cancer and not have high CEA levels. Mine never did go up with the initial cancer and right now are at 6 and I have two mets in one lung. Only certain cancers have CEA indicators, colon is one and I can't remember the other one, maybe lung?

There are worse things than to have a pouch. It may have been disgusting to have to deal with other people's but your own wouldn't be terrible. I like not having to worry about using the toilet that way or having gas or anything like that. I hardly think about it other than to check and see if it's time to empty it. And if someone has a problem with it I really couldn't care less. It helped save my life and it's just part of who I am now. I have no problem telling someone I have it if the subject comes up. Hey, they can even take a look at it if they want to.

I think it's important that people know that they can live with cancer or things that are unpleasant. And that everyone has something that makes their life different or more difficult. Usually we can't see what that is but sometimes it is visible. It's important to knw that we all have battles to face whether it's health related, mental health related or something caused by someone else. Few people have a perfect life without struggles of some sort. It's what makes us human.

I hope that if surgery is the chosen route to go you are able to deal with it emotionally and will find peace with it.

Take care,

Jan

Canadian Sandy's picture
Canadian Sandy
Posts: 512
Joined: Jul 2016

Well written Jan.

 

zx10guy
Posts: 207
Joined: Dec 2013

First, take a deep breath and try to relax.  Second, before jumping to conclusions, you need to find out exactly why the surgeon has decided to move forward with surgical resection.  Ask for and discuss the pathology and colonoscopy reports.  The information in the pathology and colonoscopy reports will make things clear as to why a resection is now recommended.  If the surgeon was able to remove the polyp and the pathology report comes back as having cancer cells present in the stalk of the polyp, this would be a clear indication for a resection as there were no clear margins.

A point of clarification on CEA levels.  There are two different assay tests for CEA:  Bayer/Siemens and Roche.  The Bayer/Siemens has been used for a long time.  Under the Bayer/Siemens tests, normal for a non smoker has been set at 0 to 3.  For those that smoke, the upper limit is 5.  For the Roche test, the limits have been raised for both non smokers and smokers.  For non smokers, it's around 4's.  For smokers, it's in the 5's.  It depends on the lab used and you should ask what the normal ranges for the particular lab that he used to do your CEA.  With that said, Jan is right that some people do not present with high CEA numbers even with advanced cancer.  But based on your number there might be something going on.  With that said, I've been going through my own CEA mystery which started back in March.  My normal CEA has always been a bit higher than the normal established for non smokers.  Under the Bayer/Siemens test, the lowest CEA I've had was 3.11 but always in the 3's with no cancer found.  When the lab we used switched to the Roche test, I wa finally back in the normal range but just by a few tenths.  If I recall correctly, my number was 4.2 with the lab's high normal at 4.7.  I then switched my oncologist.  The new one used Labcorp instead of the local hospital.  At Labcorp, my normal baseline was in the 5's.  It was 5.6, 5.4, and 5.2.  In March, my CEA jumped from 5.2 taken in December to 15.6.  A retest was done to rule out lab error and it came back at 16.7.  This started a myriad of tests to be done to search for what is causing the CEA spike.  The following tests have been done so far:  CT w/ contrast chest and abdomen, PET/CT base of skull to thigh, small bowel capsule endoscopy, colonoscopy, MRI Enterography, and just recently an endoscopic ultrasound.  The MRI picked up some thickening around the duodenum/jejunum that was investigated durin the endoscopic ultrasound procedure.  So far nothing has been found.  And if the biopsies of that area come back negative, then we're still at that mystery on why the elevation.  I had another CEA test done earlier this month which came back at 14.2.  So it appears it's not going up.  I have a follow up coming in June where I suspect another CEA will be drawn to see where I am now.  I've discussed this with my oncologist who said he's seen patients under his care show CEA behaviors like this with no cancer.  He mentioned someone who had CEA go up as high as 20-22.  He said some people have these unexplained spikes that go away or some times this level becomes their normal baseline.  He mentioned 1 out of 4 of his patients have this situation.  A friend of mine who had just gone through rectal cancer said her oncologist also said the same thing about his patients where he's seen CEAs as high as 20 with no cancer found.  I say all of this about CEA to try to give you some relief as some things such as inflammation of the GI tract can cause CEA spikes.

It might be prudent to ask your surgeon to order another CEA test to see if that number you have now is real.  And I'll mention this like a broken record here and in other forums I'm a part of, always....always request copies of your tests to include scan images.  You need to be proactive in your own care and be informed.  Read through the reports.  There will be terminology and discussions which will not make sense to you.  You can always look up the information to get a better understanding or ask your doctor to walk through the narrative.  But in all medical reports I've seen, there should always be a summary/impressions section which goes over the findings and is most always written in plain enough English for a layperson to understand.  Having these records will make things easier for you if you want to seek a second opinion or change testing facilities.

JanJan63's picture
JanJan63
Posts: 2482
Joined: Sep 2014

Great information, I wasn't aware of those factors! Get cancer and become an expert by necessity. That's what I've noticed. I'd really rather be oblivious and unaware like I used to be before I got it.

Thanks!

Jan

zx10guy
Posts: 207
Joined: Dec 2013

You're welcome Jan.  And yes, this wretched disease makes us all involuntary experts.

Sooker55
Posts: 21
Joined: Aug 2013

By all means, get a second opinion.  I too had a cancerous rectal polyp.  Two tumor boards from different major medical centers offered different recommendations, one an excision (not a resection), no chemo, no radiation.  The other recommended Chemo, radiation and resection, with temporary bag.  Very stressful decision making process, but I went with the excision, followed by a re-excision (both surgeries trans-anal) to assure clean margins (which they were).  That was four years ago.  All follow ups have been NED.  My CEA always on the high side or slightly higher than normal.  There are a few disorders that can cause elevated CEA.  My best wishes as you embark on this journey.  

 

Burnsy64's picture
Burnsy64
Posts: 6
Joined: May 2017

My CT Scan shows no sign of cancer anywhere else, so that is good news.  The surgeon says I need surgery, but no chemo or radiation.  My husband is not happy because I have chosen to go with the surgery.  He thinks that because my CT scan and MRI didnt show anything that means I dont have cancer.  The Dr. told me that if I dont have surgery my chances of getting a reoccurence is extremely high.  We live in a small town here and there is only the hospital lab.  I wish all of you luck too.  We can only try.  Thanks for all the info.  It helps.

 

Trubrit's picture
Trubrit
Posts: 4857
Joined: Jan 2013

Get whatever Cancer is in there, out. Its great news that it hasn't spread and surgery should take care of the rest. 

I wish you well, and that you go through the rest of your very long life, NED (no evidence of disease). 

Tru

Burnsy64's picture
Burnsy64
Posts: 6
Joined: May 2017

thank you and i wish you well also

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