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New trying not to panic

Ruthmomto4's picture
Ruthmomto4
Posts: 638
Joined: May 2013

My husband was diagnosed in march of 2010 with stage 3 Colon cancer. He had quite a few lymph nodes involved but I don't remember how many. He did not do the chemo and radiation, it was his desicion, poor one in my opinion but his to make. He has been going faithfully for routine check ups, his last colonoscopy in march of last year was clean. his last scan in December was clean, but the one he just had last week was not. His CEA jumped from 1.86 to 5.16 in 6 months his enzymes are mildly ( about a20 pt difference from last time) elevated. They found an 11mm spot on his liver. He is have a PET scan next week, they only do them on Tuesdays and ins has not approved it yet. 

His oncologist said something that small should not cause a jump that high, I didn't think his CEA was that high. I am guessing  he thinks there is more cancer? His type 2 diabetes has been poorly controlled due to side effects from his metformin and his cholesterol is very high. He has a fatty liver and there were always eaters of focal sparing in it. His co2 level was low and his anion gap was high. 

I am so scared and I spend every minute of the day obsessively looking anything and everything up on the Internet. I am sure it's probably cancer I am not naive enough to think its not but I would just love something positive to hold on to because I am hanging by a very thin thread here. 

Chelsea71
Posts: 1170
Joined: Sep 2012

I can completely relate. I am guessing you're worried that the areas of steatosis are hiding other tumors. Don't try and figure it out on the Internet. It's a waste of time. (I do the same thing all the time too.) Just wait for the test results. I think his CEA makes sense for a tumor that size. But I'm no doctor. Be prepared for the fact that the cancer has returned. Hold onto the fact that the liver is a treatable area and lots can be done. Try and hold it together. Stay busy until you get more info. Remember to look after yourself. Getting run down will just add to the stress. Sorry you're going through this.

Chelsea

Ruthmomto4's picture
Ruthmomto4
Posts: 638
Joined: May 2013

I was more worried maybe it has come back in an area other than the liver like in the abdomen somewhere or some lymph nodes, I think that spot is the only one the last scan they were quite emphatic that they got a great viewer the liver.

Chelsea71
Posts: 1170
Joined: Sep 2012

I wouldn't be too worried. I think the CEA makes sense. I don't know why the onc would suspect more cancer based on that number. Hang in there. Try not to worry.

Chelsea

Lovekitties's picture
Lovekitties
Posts: 3327
Joined: Jan 2010

Panic and fear are normal reactions, but are really not good for either patient or caregiver.  Don't let them rule your life, as they produce no positive effect.  Be very careful about what you read on the internet.  There is much old information out there.

While you may not have agreed with your husband's past decision, it is in the past and there is no guarantee that things would be any better if he had had further treatment.  Now is the time to look to today and tomorrow, not yesterday.

The spot found on the CT scan is just under 1/2 inch and the CEA is not much out of the bounds of normal, however they do indicate the need for either additional testing or close follow-up. 

Once he gets the PET scan things may be clearer.

What part of the USA are you in? 

The waiting is tough, I know. 

Wishing you and hubby the best.

Marie who loves kitties

 

Ruthmomto4's picture
Ruthmomto4
Posts: 638
Joined: May 2013

I know I am not doing myself or my kids any good by constantly worrying and obsessing. The dr said something about tumors in the liver are usually just cut out? I guess that's a good thing, but I read that surgery it's rough. Anyway thank you for trying to make me feel a little better I truly appreciate your kindness. We are in Connecticut. 

John23's picture
John23
Posts: 2140
Joined: Jan 2007

 

Re:

“His oncologist said something that small should not cause a jump that high”

 

Considering that a “5” is normal for most smokers, I doubt I’d call that from a “high jump” from his “1.8” normal number. Keep in mind, that you don’t know what his “base number” was prior to a cancer diagnosis.

 

I hope you realize that you are not only entitled to a second (or more) opinions from physicians? The second opinion (or third, fourth, etc) should be from physicians that are not of the same group or association. Any good physician welcomes second opinions, since it’s their way to learn of new technologies! You should really make an appointment with one or more, and see what they might have to say! Colorectal surgeons are often more objective with a diagnosis, than oncologists, and it may be worthwhile to get an opinion from one, rather than put all one’s trust in one single oncologist’s (or group’s) opinion.

 

The notion that “doing chemo or radiation” will keep one from having a recurrence is …well… not valid. Both chemical therapy and radiation are not designed to seek out and kill single cancer cells, or even small clusters of cancer. They were designed to “knock down tumors”. To date,  there is absolutely no technology that successfully addresses single cancer cells.

 

Surgery is considered to be the only way to successfully remove cancer. Chemical therapy and radiation are often used to reduce the size of the tumor, making it “safer” to remove a large tumor that may be close to invading a critical organ. Unfortunately, both of those technologies leave cancer cells behind, and it is those cells that can come back to haunt us.

 

The Liver regenerates itself, and very large sections can be removed fairly safely, -if- the patient is otherwise healthy. Weakening the entire body; it’s immune system, and it’s ability to heal itself from the usage of toxic chemicals and/or radiation, can prevent the liver from using it’s regenerative process to it’s best ability.

 

Your husband may be healthy enough to not have to worry about possible liver surgery, but only a second opinion (and one from a good colorectal surgeon) will tell you that.

 

Your husband might be better off now, even if it is a recurrence, thanks to his earlier decisions.

 

I would go get a second opinion.

 

Best wishes,

 

John

 

PhillieG's picture
PhillieG
Posts: 4885
Joined: May 2005

Like John pointed out, most people don't know that their CEA was pre-cancer plus CEA isn't (always) an accurate indicator of disease. Some people have very high CEA with no cancer activity while others have very low CEA with activity...

If your husband is not doing any active chemo treatments is he at least trying any dietary changes at all? While surgery is the most effective way of removing cancer, often cells are left behind that can cause trouble. Chemo can control and eliminate them but usually there are other cells killed too (the breaking an egg if you want to have an omelet syndrome) which certainly isn't a death sentence. Herbal options like TCM as well as dietary changes can help control or eliminate any stray cells too...

A word of caution about searching the Internet: While there is a lot of helpful information on the web, there is SO MUCH misinformation out there too. Don't become obsessed with statistics either (if you can avoid it) because statistics belong in horse racing. Also, if you do want to follow those don't forget that someone has to be in that percentage that does well, responds, survives, etc so why NOT it be your husband. And as John and others point out (and will point out) there's nothing wrong with getting a second opinion (or a third...). I think that the majority of the members here are here because they GOT a second opinion.

That's just my opinion...ask another member.
Cool
-phil

Ruthmomto4's picture
Ruthmomto4
Posts: 638
Joined: May 2013

If wasn't for cea I probably might not be as scared. It went from .7 9/11, 1.46 4/12, 1.86 10/12, 5.16 4/13. The slow increase worries me. You are right I dont know what it was before the cancer that was a good point it actually helped a lot. He did do surgery they removed a large portion if his colon and several lymph nodes. His tumor was so low it was almost rectal cancer. I think it's time we got a bit more proactive with this, some diet changes and supplements are definitley not out of the question. 

I do not like his oncologist he is rude and mean. He came in yesterday and started going over his history and I asked him to please just tell us what they found, and he said no I am going to talk first. Like I  heard anything he said before anyway, plus when my husband opted out of chemo he called him a moron. I am pushing for a new dr but I am not pushing too hard until after the results. We have a huge trip to Disney our daughter is dancing in the parade with her dance troop June 24 andi know the oncologist is going to tell us we should not go. It took 3 years to grow I think it could a week or two right?

annalexandria's picture
annalexandria
Posts: 2573
Joined: Oct 2011

I would like to add from my own perspective that not doing chemo/rads may very well not have changed the outcome of your husband's progression.  There is some thinking now in the oncology world that doing chemo when there are not visible tumors is not the best course.  I for one am someone who wished I had skipped it, as I had recurrences despite the chemos, and am left with a host of unpleasant, possibly lifelong side effects.  So I think that at least that aspect of the worry can be let go, and you can move forward to what lies ahead. The PET will give you a lot more information to go on (I find that it's the not knowing that really messes with your head).   With a little luck it will be a single resectable spot in the liver that can be remedied, and there will still be hope for a cure in his future.  Hugs to you both~AA

Ruthmomto4's picture
Ruthmomto4
Posts: 638
Joined: May 2013

They finally released the radiology report. It said they found this last time but were watching it. Not sure who to be pissed off at there. Anyway they said it went from 7mm to 11mm it was a small low attenuation lesion in the right posterior hepatic lobe, and that his gallbladder was contracted. I am clueless can anyone offer me some non doctor terminology on this.

Ruthmomto4's picture
Ruthmomto4
Posts: 638
Joined: May 2013

I would be relieved if they had not found this darn lesion. My husband had his apot with his endo for his diabetes and other than his cea level he re ran all his blood work. Everything was within normal range, all of it co2, AST, alt, anion gap, it all went back to previous normal levels. Can you have a liver metastases without abnormal liver enzymes? It's probably just too small to change things I guess. I might go insane before we ever know anything for sure lol 

annalexandria's picture
annalexandria
Posts: 2573
Joined: Oct 2011

Sounds like you really need to talk with the doctor to get a complete picture of what is going on and what the plan will be for your DH.  7 mm is really tiny, so I can see why they were watching it (all kinds of things will show up on these tests that aren't cancer, it's happened to me on several occasions, but they should have mentioned it to you).  The "watch and wait" approach is often used when it's not clear if something is cancer or not.  Sometimes they may choose to biopsy a spot, but something that small would be easy to miss, and any biopsy has the risk of spreading the cells if it is cancerous, so sounds like they took the best approach.  I would hope that surgery would be an option for one small met like that, with the potential for a very good prognosis.  AA

janderson1964
Posts: 2215
Joined: Oct 2011

That is a very samll jump in CEA and still a relatively low number. I think his oncologist is over reacting. The spot on his liver is small and should be operable. The last tumor I had cut ou of my liver was about 8 times the size of that.

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