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Test - soft tissue?

strick7106's picture
strick7106
Posts: 9
Joined: Aug 2013

Just found this site and it looks like a great place for support, and finding out what others have been through.  Here’s the thumbnail sketch of my situation.  I’m a 57 year old male, and my name is Ron.

May of 2010… Abdominal pain took me to the emergency room where Stage 3 colon cancer was diagnosed.  During discovery a colonoscopy was performed and the wall of the colon was punctured allowing the abdominal cavity to be filled with #&*+*. Surgery removed the tumor and 10 lymph nodes (4-cancerous & 6-clear), and placed a colostomy bag.  Spent 16 days on a respirator, and a total of 72 days in the hospital fighting infections (went septic) and recovering.  (should have died twice during this ordeal but evidently God wasn’t done with me yet.)

July 2010 thru February 2011 … 12 chemo treatments (1 every other week)…. 5FU & Oxy

March 2011 …. Was told I was cancer free, and we did quarterly check ups going forward.

September 2011 …. Take down surgery

December 2012 … Abdominal pain once again drove me to the emergency room and surgery discovered the cancer was back.  Metastatic Colon Cancer was the official word and it was on the outside of the small intestine and tumors had closed off the small bowel causing an obstruction and the pain I experienced.  Two surgeons and 6 hours later they had removed the worst of the cancer but there was still a lot of smaller tumors remaining, however all the other organs were clean.  (God still wasn’t done with me yet.)

February 2013 … Started (12) chemo sessions (1 every other week) with 5FU & Irinotecan – only made it through 7 of them as I couldn’t tolerate the side effects of the Irinotecan. 

May 2013 … Did the KRAS test and found that Erbitux would be an effective next option for treatment so I did 8 treatments (1 per week).  Did a CT scan and found that the cancer had not spread anywhere else so that was a positive, (evidently there is no way to see cancer in the soft tissue of the small bowel – so we don’t know if it’s getting bigger, or smaller, or staying the same… so if it’s not spreading we’re calling that a victory).  Started a second session of 8 Erbitux treatments and only made it through 3 of them before having a terrible reaction.

August 2013 … Reduced the Erbitux dose by 20% and will do treatments 2 out of every 3 weeks.  This seems to be a good protocol as my body is adjusting.  Just hope the drugs are being effective on the cancer.  We’ll do another CT scan after finishing this 8 treatment cycle.  This scenario will probably go on for as long as I’m alive.

QuestionI’m told by 2 different oncology groups that there is no test available (CT, PET, MRI, X-ray, etc.) to actually see the cancer on the soft tissue of the small intestine, (except for cutting me open and looking).  Can anyone confirm if that is accurate from their experience?

jen2012
Posts: 1206
Joined: Aug 2012

Hi Ron..you've had more than your fair share with this. I don't really know about the scans. My husband had his first scan since surgery and it showed "something" in the soft tissue that they are saying is just inflammation. He had a Ct scan. Hopefully someone will have more helpful advice.

strick7106's picture
strick7106
Posts: 9
Joined: Aug 2013

Jen2012,

Thanks for taking the time to drop me a note.  Hope things go well for your husband. 

Ron

lp1964's picture
lp1964
Posts: 852
Joined: Jun 2013

X-ray can show cancer, but it's a flat picture so it doesn't show the exact location of the cancer in 3D.

CT is a 3 dimensional x-ray that shows exactly where the tumor is. It's often used with barium you drink to outline the tumor.

MRI is not an X-ray. It's a different energy. It's more accurate to show lesions.

PET scan is good to show where is cancer activity by measuring the sugar uptake of cells, but not good to show the outline of the tumor. It's mostly used to see if there are metastases anywhere, but for planning the treatment you need more accurate scans listed above. If used too early after surgery or radiation it often gives false positive activity, because cells that are trying to heal also show hyperactivity.

Ultrasonic scan also show cancer, often used right before and during surgery.

Now different doctors have different favorites and that's their personal choice. I believe you should have 2-3 doctors evaluate your scans especially at the beginning of your treatment.

Indurance companies also play games with this. They often try to conver on and not the other, because one can be much less expensive, but you or your doctor should never compromise on that.

if any of you have different info please, correct.

Laz

strick7106's picture
strick7106
Posts: 9
Joined: Aug 2013

Laz,

Thanks for the note.  You're obviously well versed in the different technologies.  I've had 2 different oncology groups tell me basically the same thing, that as we go forward they would use the CT Scan and look to see if anything was spreading to hard tissue ie. liver, kidneys, etc.  If nothing is seen on hard tissue then we stay with the current treatment of Erbitux and ASSUME that the cancer is not getting worse.

Just seems with all the technological advancements that have been made over the years there would be some sort of test/scan that could pinpoint the cancer in the soft tissue and let us know if it's getting better or worse.  I guess it's just one of those things along the cancer journey that's a bit frustrating. 

Thanks again Laz for taking the time to drop me a note.  God Bless.

Ron

Chelsea71
Posts: 1170
Joined: Sep 2012

There is no test that is really effective at showing cancer within the abdominal cavity.  Several times my husband was full of cancer and ct, pet and MRI all showed NED. These tests were done one week before surgery.  Opened him up - cancer all over the abdominal cavity.

 

Chelsea

strick7106's picture
strick7106
Posts: 9
Joined: Aug 2013

Chelsea,

Thank you for taking the time to share your experience.  Before my Dec. 2012 surgery I had a CT done a couple days before and it showed nothing, just like your experience.  I'm sure the surgeons also wish there was some way to see what was going on behind the abdominal wall to know what they were getting into before they cut.   

Ron

traci43's picture
traci43
Posts: 439
Joined: Jul 2007

Ron - I hope that your treatment is effective.  It sounds like you've been through a lot.  I've had pretty good results with reduced doses and it can really improve the quality of life.

I have stage 4 colon cancer with mets to ovary and omentum originally.  First recurrance CT and PET showed 3 tumors near original site in pericolic fat.  I had HIPEC surgery and they only found those 3 tumors in a bit of omentum that was not removed during the first surgery.  The HIPEC surgery was 10 hours, and they went through my abdomen with a fine tooth comb. 

Recently I had a recurrance down by my rectum in the lymph nodes or fat.  It showed up on the CT and PET.  Now there may be many small mets that aren't visible to CT, PET or the surgeon, but generally CT and PET have been pretty accurate for me.  My HMO has then done separately.  What I've been told is the CT done with the PET is not as good at showing cancer as a stand-alone CT.  So I do CT scans until something shows up, then they use the PET to confirm that it's likely cancer.

 

strick7106's picture
strick7106
Posts: 9
Joined: Aug 2013

Traci43,

Thank you for your note.  I guess the small bowel does present some challenges since it is alomost 20 feet long and all rolled up into a ball in the abdominal cavity.  Pretty tough for any test/technology to pinpoint something in that mess.

I appreciate your comment regarding the results you've had with 'reduced dose'.  Just had my 2nd reduced Erbitux treatment yesterday and it seems at this early stage that it has allowed me to feel better, thus improving my quality of life also.  I've continued to go to work through my entire journey so feeling the best I can is a huge deal.  I decided early on that giving up was not an option so I would force myself to get out of bed in the morning and get to work.  Some days I can only stay in the office till 1:00 or 2:00 and fortunatley my job allows me to be able to work from remote locations.  The skin rash from the Erbitux has been horrible in the past but seems much better with the reduced dose, and my fatigue factor is similar.  Hope things continue like they are - this is tolerable.

I also take comfort in your final comment about using the CT scans to find something, then taking further action.  That seems to be the course that I'm on  as well.

Thanks again Traci43 for taking time to write.  God Bless.

Ron

annalexandria's picture
annalexandria
Posts: 2254
Joined: Oct 2011

I too had tumors in the small intestine, and at one point, just as an experiment, my doctor had me do a CT scan, PET, and a peritoneal MRI (this is something fairly new, they had only done 12 of them at the large facility where I was being treated).  

The conclusion was that the PET was the best for showing that "something" was going on, with the caveat that it was not necessarily cancer.  Spots lit up on the PET on both the peritomeum and in the small intestine, while the CT showed nothing.  The MRI was a little more revealing than the CT, but not to the point where a radioloigst would read the results as cancer.

 I now get a combined CT/PET and it has shown every tumor I've had, even when they were fairly small (as in 1-2 cm).  At the same time, it showed spots that turned out not to be cancerous (apparently just normal bowel activity can sometimes result in a higher SUV).  My doc's approach has been to scan every three months, and if spots are seen that are iffy, to give it another three months, then scan again.  If there was change to indicate growth, then surgery was in order.

Just as an aside, I did a couple of different chemos, neither of which worked, but I was able to get to NED after my last surgery of five, in Dec. 2011, and have remained there since (knock on wood).

Good luck, and keep us posted on how things go for you.

Ann Alexandria

strick7106's picture
strick7106
Posts: 9
Joined: Aug 2013

Hey Ann - Thanks for the info.  Interesting approach with the combined CT/PET tests.  I'll bring that up with my doc the next time we visit and see what she thinks.  It would sure be nice to know if things are getting better/worse/or staying the same.  Not only will I 'knock on wood' for you, I'll keep you in my prayers!  God Bless.

Ron

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