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New scans? CEA and Ca19-9? What could it mean?

MandiePandie's picture
MandiePandie
Posts: 84
Joined: Dec 2020

Hello lovelies. Sorry I don't reply to my posts but your replies mean the world to me. Can't even remember where I left off but my father had an abscess near the anastomosis after his resection so he was admitted to the hospital and put on IV antibiotics. After a few days the surgeon decided to give him a (hopefully) temporary ileostomy. He had to have an NG tube placed multiple times (which he HATED) over a week because of a post op ileus. 

He has been home for a little over a week and while he has experienced some PTSD from his hospital stay, he seems to be improving each day and is eating and becoming more comfortable with his ostomy. 

Now here's the rub, he finally met with an oncologist a few days ago and she ordered a bone scan, MRI, port installation and a PET scan all for next week. She was very concerned because my father reported that his sciatica has been really bad since his 2 week hospital stay. He has always been a stomach sleeper which he says helps with the sciatica but he obviously can't because of the ostomy now. She told him that sciatica rarely causes foot pain. 

I am SCARED sh*tless that the new scans will reveal a metastasis. My dad doesn't seem worried as he has had sciatica for at least 6 years, and has always managed it with massage. He figures if it were cancer it would have been way worse by now. I'm not that sure, I mean I literally heard the recording of the doctor saying she was concerned and wants to check for cancer with those scans. 

I suppose it's better to know if something else is around then not know, but I just wish we could have the peace of just focusing on tackling adjuvant chemo. Next week will be hell. He has had 5 chest/abd CTs since September of 2020 and a few chest xrays. The first CT was in September 2020 when he had a kidney stone and it was done without contrast. The radiologist commented that he had some diverticulosis in the sigmoid. His first routine colonoscopy in December of 2020 showed us that it obviously was a tumor and not diverticuli. That scan also mentions a sub-6 mm left lower lobe pulmonary nodule that is unchanged since 2005 as well as hepatic steatosis (fatty liver). He had a chest/abd/pelvis CT with contrast after the colonoscopy which mentions a few small scattered calcified granulomas but no suspicious pulmonary nodules, hepatic steatosis, no aggressive osseous (bone) lesions, and overall "no metastatic disease in chest, abdomen, or pelvis". The next 3 CTs with contrasts (some with some barium type I think to check the ileus), and xrays were done to check the abscess and placement of the NG but they all basically comment that the lungs are clear, the liver is fatty but clear, and the bones have no lesions. 

I guess my question is, after all this, do you think it's possible that he could have metastasis? Of course they have never scaned his head and I'm not sure if any of the scans she ordered will, so of course I'm worried about a brain tumor. It's just such a weird feeling I have now of not wanting to know. I wish we could just not have any more to deal with. 

Oh and the oncologist also ordered another CEA and a CA 19-9 (which I asked for prior to surgery but was told no because his CEA was normal). His CEA before surgery was < 0.5 ng/mL. His CEA is now 1.1 ng/mL and his Ca 19-9 is 3 U/mL. So still normal but a rise in the CEA. Don't know if that could infer a spread since the CEA is higher, infer that he doesnt have a spread because the levels are within normal, or if the results don't mean anything since his CEA was not elevated when he had at least stage IIIa T2N1 cancer. 

At least he didn't have perineural invasion (cancer around the nerves), although he did have lymphovascular (in the lymph/blood vessels) invasion. Meh. 

SnapDragon2's picture
SnapDragon2
Posts: 570
Joined: Nov 2019

Was he put on an anti-coangiolent (sp?).  My left foot was hurting after surgery and thought maybe it was because of being suppine for so long in surgery but they immediately put me on the shots for preventing bloodclots.

MandiePandie's picture
MandiePandie
Posts: 84
Joined: Dec 2020

He was actually. He was fairly active (except for the days when he had the NG) as well. He doesn't have any signs that would point to a DVT (blood clot). Dad says it's the same old sciatica pain he has always delt with but just a worse flare of it, which he says he has had before as well. So it's more of a nerve pain he feels in his right lower back/hip area and down his thigh and down to the arch of his foot. 

SnapDragon2's picture
SnapDragon2
Posts: 570
Joined: Nov 2019

Hi CA19-9 is really good.

MandiePandie's picture
MandiePandie
Posts: 84
Joined: Dec 2020

Yeah I mean, im hoping it means theres no more disease in him, but maybe it was good before the cancer was removed. I dont know, its all so complex sometimes.

Trubrit's picture
Trubrit
Posts: 5487
Joined: Jan 2013

You ask, after all this, do you think it's possible that he could have metastasis?  I say yes, of course it is possible. Anything is possible.  If the Cancer has spread, then deal with it when you find out. Worrying about what might or might not be, will spoil the time you have with your dad now. 

If your dad has suffered from sciatica for years, I'm sure he can tell if the pain is the same as before. Maybe a nerve has been pinched and that is why he is suffering so. 

Mets to the brain are rare. We have had members on the forum who have had brain mets, but not too many.  Most Oncologist don't scan the brain. If headaches become an issue, eye change, dizziness, then they will scan.  

Thanks for the update. Don't be concerned about not answereing, we all know who it is. 

Tru

MandiePandie's picture
MandiePandie
Posts: 84
Joined: Dec 2020

I guess the question is more like, how accurate are CT scans, or maybe, has anyone experienced finding a met on a different type of scan if a CT was clear... but all the same, I get the point. Same ol' same ol' wanting to find some sort of evidence or sign to make me feel like everything will be fine when it has little barring on the reality of the situation. We wont know the results until we know the results. 

Just wishing medical science was more advanced. Who knew that there could be such a large margin of error. Well, cancer patients know thats for sure. Just hoping we are on the positive side of things again. 

Objectively it it is noteable that he has had this sciatica pain on and off for years, he is familiar with it and it does make sense that 15 days in a hospital bed may have just pinched a nerve or something. It just isnt a nice feeling to hear a doctor say they are concerned, but im sure no one would like to hear that. 

No classic s/s of a brain tumor, just me going through the motions of what if. 

 

Trubrit's picture
Trubrit
Posts: 5487
Joined: Jan 2013

Back in the day, my CEA jumped, jumped and jumped again, causing my Oncologist to order a CT Scan. The scan came back clear, but my CEA continued to jump. He ordered a PET Scan, which found a 2 cm tumour in my liver.  So yes, CT Scans can miss tumours. How often that happens, I can't tell you. 

Tru

Tueffel's picture
Tueffel
Posts: 300
Joined: Feb 2020

Unfortunately it is possible that your dad has metastases but does that mean that he will have them? That is why people refer here with NED, no evidence of disease. CT, PET, MRI are all really good tools, medicine would be useless without them, but all of them only detect cancer cells that have a certain size. None of them can detect microscopic cells swimming around in the blood. If you to microscopic level maybe all of us have some mutated cells that are defeated regularly by our immune system. 

But is it the time to worry about it? No, instead I would look at it the different way. The oncologist checks now everything. On my experience that attitude is good. My dads oncologists were the same and guess what: they found something, operated him and he feels better and better every day. Careful doctors dont have to be a reason you are stressed about. I would be more worried if they dont check it out. 

For the sciatic nerve: maybe a neurologist might also be good. That is normally a neurology field...

I would be really surprised if he would have a brain tumor. You did not describe any symptoms related to the brain and the brain is a really delicate structure. Also you need to think how the blood and cancer cells travel: if the cancer is in the colon, all blood that supplies the colon goes to the liver first. Liver is like a mesh. Then the blood travels to the lungs, same like the liver, fine structures. Then if the cells did not get stuck to one of this areas it could flow to the brain. The father of a friend of mine had a brain met, he had stomach cancer and the liver full of metastases. The brain met caused vision problems that is why they did a scan and found it. 

One thing I would get checked out: you mentioned your dad has hepatic steatosis, he will also have chemotherapy and both have an effect on the liver. So, I would talk to gastroenterologist how to get his fatty liver into a better state to handle the chemo better. Maybe diet will make an effect? 

Tueffel

Trubrit's picture
Trubrit
Posts: 5487
Joined: Jan 2013

What a wonderful asset you are to the forum.  Think, not only are you helping your dad through his Cancer, but how much you are also helping us here on the forum AND training to help many others.  Now, that is a life well lived. Thank you!

Tru

Tueffel's picture
Tueffel
Posts: 300
Joined: Feb 2020

Thank you Tru but it is the other way around. Since being on this forum I learn what kind of doctor I want to be. Of course knowledge is very important but communication and social competence is as important as knowledge. Most of the times I think "Why is the doctor not taking the effort to explain everything?" Trust in the doctor who is treating you is so important and I am sometimes so frustrated at my future collegues here that they are not taking time to explain simple things. I do understand medical lingo so I do understand more and more what things mean. It is so much more complicated when you dont have a medical background. I remember my dad told me that one of his liver metastases was 13,5 cm. Until I read the report that stated that it was the liver segment and not the mets. How can you as a patient do a proper decision on your own live if you dont understand what is what?

So yeah in my opinion I would have failed as a doctor in communication when my patients need to google etc to find out in which state they are. Sometimes I think I NEED to go into oncology because of some experiences here. Maybe I would without my dads diagnosis? But I feel in love with neurology and that is not going away. ;)

MandiePandie's picture
MandiePandie
Posts: 84
Joined: Dec 2020

His liver has me most concerned but the MRI with contrast should give us the best look at it. Just was trying to find comfort in the fact that he has had CTs with contrast but I am famliar now with MRI's with contrast being the best way to look at the liver, especially in cases of hepatic steatosis where differentiation can be difficult. But again, we wont know until we know. His AST and ALT arent elevated, so his doctor was not concerned about the hepatic steatosis in general. Not sure there is much that he can do anyway, he lost 20lbs from his hospital stay and is unfortunantly eating processed foods because of his ileostomy. 

Thanks for your valuable input, it means a lot. 

Tueffel's picture
Tueffel
Posts: 300
Joined: Feb 2020

Liver MRIs are hard. A CT is done in seconds but for the MRI your dad needs to lay still for quite some time, monitor his breathing etc. That can be quite exhausting. For the PET it might be the same. For my dad the fasting was the most challenging. His bood sugar was really low then which is good for the PET but he was close to a sugar level that could be harmful. 

I am into neurology anyways so I love MRI. They are way more detailed than CT so it is very cool to look at the brain ;)

I wanted to add something to the brain mets thing: I explained a lot of anatomy but that does not mean that he wont have it. I just cant believe that this might be possible while skipping liver and lung. 

I dont know either what you can do with hepatic steatosis but with future chemo, I would definetely try to eat as healthy as possible. Maybe try to convince your dad to eat more vegetables. My dad had always problem with his stoma when he eats processed food. He adds then sauerkraut. Maybe your dad would like oatmeal (without sugar) with natural joghurt and some blueberries? My dads breakfast is blueberries with oatmeal, joghurt and some oil with high omega 3 fatty acids. I prefer oatmeal with milk, cinnamon, dried apples and almonds. This way your sugar intake is low, and joghurt in general has very good bacteria for your gut. Fibers are also very goid because they prevent contipation. 

I would give it a try. I feel good with, my dads loves it and even a friend started with it and loved it. 

worriedson714's picture
worriedson714
Posts: 311
Joined: Dec 2019

          Hope you don't mind a question is it the same for rectal cancer ? Does the blood flow to liver and lungs first like with colon cancer ? Reason I ask my dad has thickening of the base of the tongue trying to figure out how likely it is for rectal cancer to spread there thanks for any help you can offer.

flutemon's picture
flutemon
Posts: 40
Joined: Jan 2019

My wife dealt with sciatic pain and had lumbar fusion (L3/L4 and L4/L5) and has the same pain/numbness pattern - hip, thigh, shin, and down around the arch of her foot.  (She's not the crc patient, I am). So if it feels the same to him, it could be the same.  We'll be hoping it's not a tumor causing the problem.

By the way, I'm a stage 3b that developed mets to the liver, so of course there's no way of knowing if there will be spread.  But don't let the worry consume you.  Find the joy and live each day!  Even without cancer life is short.

beaumontdave's picture
beaumontdave
Posts: 1166
Joined: Aug 2013

Mandie, I've had dozens of CT scans with PET scans after, so first, a CT may fail to show all activity, and second, not once in the several years they were monitoring/scanning my every three months, did they scan above my neck nor below my pelvis. Mets in the brain are exceedingly rare from CRC, I believe, but are possible. My pop had prostate cancer mets mass in his brain, after he stopped treatment, but that's a different cancer. Sciatica certainly would be aggravated in a hospital setting and those beds. My tailbone was pretty sore by the time I was discharged, without any other issues.............................................................Dave

NewHere's picture
NewHere
Posts: 1340
Joined: Feb 2015

Hey Mandie

I have had almost 40 CTs/MRIS/PET Scans at this time.  They all do different things.

Tueffel nails great information above.  Another thng to keep in mind, when dealing with cancer, it is difficult not to think the worst.  Each of us probably have had an ache, pain, headache or other issue is a possible tumor.  Try not to worry too much.  The drugs, hospital stay and changing in the sleep positioning can all cause issues.  The reports you describe look to be fine.

As to sciatica rarely causing foot pain.  Well I am not going to give medical advice.  But coming from a family with back issues (people having disc issues, me with my spinal tumors) sciatica causing pain in the feet is not something I would consider "not likely".  You Dad knows his pain from exeprience, that is a good guide.  And when you have gone through the various pains, you get to tell when they are different.   Each feels different.

As to head-to-toe scans, when I have PET scans I get full head to toe to have a record for future reference (your Dad getting all these tests are a good thing to establish a benchmark, so try to think of it that way.)  Also keep in mind that people may say "they are concerned" and not mean the worst scenario, it can be more that they want to make sure they are complete if there are things that they may not have a readily available answer.  

Spinal tumors from CRC happens in less than 30% of cases overall and develop over time.

The article below is from 2009.  250 patients showed that there was no mets to the bones without a met to another organ. In other words, if there are no mets in lungs, liver or elsewhere, there were none in the spine.  Again, nothing is ever absolute, but this is something that you should keep in mind.

And lastly, as you know, I have  mets in my spine since 2017 (plus all the other cancer.)  Biked 20 miles 2 days ago, ran almost 4 on treadmill yesterday. Figured I needed to mention that also in case it helps you worry a bit less Laughing  (I celebrated 6 years from my first surgery last week.)

 

 

https://bmccancer.biomedcentral.com/articles/10.1186/1471-2407-9-274

Results

No patient had isolated osseous metastasis at the time of diagnosis, and none developed isolated bone metastasis without other organ involvement during our survey period. It took significantly longer for colorectal cancer patients to develop metastasis to the lungs (23.3 months) or to bone (21.2 months) than to the liver (9.8 months). Conclusion: Metastasis only to bone without other organ involvement in colorectal cancer patients is extremely rare, perhaps more rare than we previously thought. Our findings suggest that resistant metastasis to the lungs predicts potential disease progression to bone in the colorectal cancer population better than liver metastasis does.

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