How are we supposed to check for recurrence!?!?!

[cancerfighterswife]

So my husband met with his oncologist yesterday. He is in his second week of radiation and things seem to be going well so far. We had some questions as far as check-ups go after treatment. He said that we will check CEA levels and do colonoscopies. After my husband had surgery but before chemo, his CEA was only 1.2. His oncologist said that because his levels weren't elevated to begin with, the CEA checks may not be very accurate. He doesn't want my husband to do any CT, xray, or PET scans because he says that based on his age, the risk is too high of the radiation from those scans causing cancer. So when my husband asked how we would try to detect a recurrence early, his oncologist pretty much said that we won't necessarily know until he is symptomatic. I just feel like that isn't good enough. I know that there will always be a scary feeling in the back of our minds, but it would be nice when he goes in for those followups to have some sense of relief afterward. I don't want to feel like the tests are for nothing. He also said that in rectal cancer, the highest risk of recurrence is in the pelvis or the lungs. He said that it typically will skip the liver and go straight to the lungs. That was the first time I had heard that, and have read that even with rectal cancer, the liver is a common place for it to return. I like his oncologist, but sometimes feel like the information we get one week from him is different than the next. I am feeling extremely frustrated because I feel like to them it's kind of a.... "well, we will just wait and see" and that isn't good enough for me. Has anyone been told any of this stuff or are CTs and PET scans common after stage 3 rectal cancer? Sorry for the long, venting post, but I had to

[Hall0731]

I feel your pain. I am going thru the same thing. My last ct was last year before my surgery. I asked him to have one at the end of may after I had finished chemo and the surgery. Well, I had something show up on my liver, which resulted in a pet/ct , which then showed something on my lung that is speculation right now. The liver ended havinig a liver ultrasound. After everything is said and done, My liver is fine so far, but have to repeat ct at the end of August to have nodule in lung checked for growth. I am having trouble accepting that I won't have an ct of the abdominal area again till next year. I wished they would give me another one in 6 months. My cea before surgery was only 4.8 which isn't extremely high. Not sure if it is a marker for me now. It was been at 0.5 since half way thru chemo.


I wish I had more advice for you. I would suggest really sitting down with the oncologist and relating your concerns and push and be proactive about your husbands care. If you get no where, I would suggest unfortunetely finding another onc.

[Bob_Weiss]

From CancerFightersWife:
"He also said that in rectal cancer, the highest risk of recurrence is in the pelvis or the lungs. He said that it typically will skip the liver and go straight to the lungs. That was the first time I had heard that, and have read that even with rectal cancer, the liver is a common place for it to return."

Your oncologist's remark does seem odd. I have been told and read that for CR cancers the most frequent sites for metastases are the lung and liver. More often lungs for rectal cancer and more often liver for colon cancer. That is the reason that my follow-up CAT scans are equally for the chest or for the abdomen. Never anyplace else. I've had many follow-up scans since becoming NED, but I'm a senior, which I assume is the reason the oncologist seems unconcerned about the radiation I receive. He believes that the scans are of great value in identifying tumors while they may be still curable.

[NWgirl]

Wow. I would personally freak out if my oncologist had taken that position. Then I would have changed to a new oncologist who was a little more cautious. My CEA was very low at diagnosis and has never been a great measure - BUT - trends in my CEA, even small ones - I'm talking a few points here, a few points there, have always been good indicators that my cancer was back or was growing. So even a low CEA can be useful if it starts to trend up.

I have a friend, a fellow Colondar Model - also stage 3; whose doctor takes the same position as yours. He watches for any rise in CEA - and if there is a rising trend, then he'll order a scan - otherwise - no scans post treatment. That makes me nervous, but they seem satisfied with the plan.

I'm a rectal cancer patient - stage 3 at diagnosis; recurrence in lungs and now lymph nodes. My recurrence first showed up almost 2 years after finishing chemo and it showed up first on a CT scan, then confirmed with a PET scan. I've been living with the recurrence for 2 1/2 years now (on chemo the whole time) and I have NEVER had any symptoms from it. On my last 2 scans the cancer has shown growth in my lungs and lymph nodes - but still, NO SYMPTOMS. So my question to you and your oncologist would be this - just how bad does the cancer have to get for it to show symptoms? For many of us who have had a recurrence, we've had no symptoms at all - scans have caught the growth. So far, knock on wood, my liver is clear.

I should also note, when diagnosed, I had 27 lymph nodes affected, so I was at a MUCH higher risk of recurrence than your husband. I think at a minimum I would get a 2nd opinion. I know we're all hesitate to question what a doctor says - we think their word is law. But we're talking about your husbands life here. I'd get a 2nd and possibly even a 3rd opinion on this. Then weigh the information you have been given and make your choices.

[Guinevere]

...

I wish I had more advice for you. I would suggest really sitting down with the oncologist and relating your concerns and push and be proactive about your husbands care. If you get no where, I would suggest unfortunetely finding another onc.

My thoughts exactly!

God bless ~
Guinevere

[Cb75]

I also have had normal cea throughout However, my blood is still monitored as it can change if there is a recurrance as the cancer can mutate and change. I would push for more frequent scans. My oncologist said the amount of radiation from a ct scan is like taking a trans atlantic flight. It was the least of his concerns. However, I am stage iv. It's a bit of a different situation.

[Cj51]

I was diagnosed stage IIIB, and at that time my CEA was about 3. Post treatment, I get my lungs and my lower half scanned once per year each. (not at the same time).
I agree with the other posters that you might get a second opinion and go from there. As survivors, we're all a little gunshy about the possibility of recurrence, but if there is any validity to your Onc's opinion that the scans might cause cancer, then I'd want to know about that too. I've never heard of that before, but that doesn't mean it's not true. It would be a major kick in the pants to get cancer from the scans that were looking for cancer...

[janklo]

I agree, the risk of recurrence outweighs the risk of multiple exposures to radiation. You can also use MRI (no radiation). I believe PET scans have less radiation than CT scans too.

[kiwiinoz]

My take on this is that I am getting closely monitored either 6 monthly or yearly with CT scans until I am 2 years out from treatment (ending Folfox) or a recurrance, after that my risks of a recurrance reduce so my need for close monitoring can reduce to yearly CT scans.

I am now 40 and I would take the risk of CT scans causing cancer later in life that more metastasis being missed as the threat from the mets means that if unchecked or untreated I will not be around to possibly develop additional cancers later in life.

I am stage IV so my take is perhaps different than a stage III and respect that it is a very individual choice, but my policy in life is always to err on the side of caution and more so in this situation where there is a lot at stake.

For me, I would be pushing for monitoring as you seem to have CEA that is not reliable for monitoring so how else does the onc propose to check? Just like Belle (NW Girl) I had lung met with no symptons and by the time I would have been symptomatic I would have been very, very advanced so I personally do not agree with your onc and would encourage both a deeper conversation with the ONC on this point, or failing that, a 2nd opinion to see what others will do.

Good luck

Kiwi

[justin case]

I spent a lot of money last year on medical bills (frightening ). My onc asked for a CT, and we agreed it could wait until next year. Well, I've spent a frightening amount on insurance this year( ), and found out the Ct is covered in full by BCBS. My onc said I didn't need a colonoscopy until 2015 ! I don't think after chemorad, Pet scans and who knows what other treatments have tried to debilitate me, I should worry about radiation from tests. I'm getting my CT Friday. Oh, and I have been having pains and such, but I just don't feel the need to get scanxiety. Onc thinks I'm just getting OLD, and I am a bit too active
Regards,
Michael

[Ehut]

At stage III your husband is at high risk of recurrence, so if I were you, I would get the CT scans. Symptoms of metastasis usually don't develop until it is advanced. Take it from me, I had 6 liver tumors and felt 100% with no symptoms (other than blood in stool) when diagnosed. My CEA was also only 2.3 at that time.

You can try to find a lower radiation dose CT scanner also. The GE model scanner I use has around 30% less radiation exposure without compromising image quality. And who knows, even if you do develop a new cancer 20 years from now, perhaps there will be a cure or new treatment for it anyway.

[PainInTheAss]

I presented with a recto-vaginal fistula. Went to the ER and they did a CT... The ER doc says, "Good news! You don't have a tumor!"

Oh, except for that 5cm tumor in my rectum that you guys missed because no one did a rectal exam! (I knew there was something else wrong and saw a specialist after I was discharged)

Personally, because the CT missed a large tumor, I would be nervous about getting just a CT scan to check for recurrence at this point! Just how big does it have to be to show up on a CT scan?

One thing I've learned from this and from other posters on this site is to not just take any doctor's word for anything. Not when your gut is telling you something else. You have to find a doctor you can trust and what he/she is telling you has to "ring true" inside. It couldn't hurt to get a second or third opinion just to see if what your onc is telling you is right for your case.

I read a post on here not too long ago where the poster said they have their CEA checked very frequently (like 2 to 3 weeks, from what I remember) and they go ahead and do chemo when it goes up rather than waiting for something to be big enough to show up on a scan. That makes sense, right? Zap it while it's small. It sounds like this person has a great relationship with their doctor to accommodate that kind of aggressive approach (pretty sure they were stage IV). I don't know my CEA levels yet (will find out next week at my appointment - just did my first CEA test), but I'm hoping they are a good tracking/marker for me.

I'm so glad people are sharing that even low CEAs can be a good marker with even slight increases sending a red flag. Who really wants to wait until something is big enough to show up on a scan to take action? And that would suck if your doctor wouldn't do anything if CEA levels are rising but scans are clear. How could you not worry?

But the "wait until you have symptoms" is just baffling! "Like if I go into a coma?"

I love how Kiwi said I would rather get scans to catch a met early enough to treat it so that I have the chance to live long enough for the scans to cause cancer! LOL... love that logic... true, true!

[chemo sabe]

My Onc advised me that based on circulation and the location of my tumor (prior to removal), a metastases of my rectal cancer would probably show up in my lungs rather than my liver - that agrees with what your onc told you. He also told me that some years from now he would rather be talking to me about a scan induced cancer than not talking to me at all. But I am considerably older than you - I am 60 years old and was diagnosed in Oct 2011.

If you have access to a second opinion, I would get one. I am under close monitoring for recurrence and I got two scans in 2012 and one in 2013 with another scheduled for Sept. My schedule is simple. See my surgeon every 6 months, get a colonoscopy every year, see my oncologist every 3 months (onc sets up for 2 scans each year and blood work each visit). If my colonoscopy is clean in Jan, that exam will go to every two years. My surgeon also gets copies of my scans and colonoscopy.

The problem I see with skipping the scans is the same one pointed out by everyone else (including yourself) - that it the fact that early cancer has no symptoms and a recurrence of your rectal cancer (wherever it is located) may not trigger a rise in the CEA marker.

[janderson]

CEA is not an indicator for me. It has always been around 1 even when there were known tumors in me. Scans are the only accurate surveillance for me which sounds to be the same for your husband. Radiation from scans to me is a necassary risk. I made the mistake of worrying about the risk. After I had 3 years of clean scans we decided to go 14 months between scans BIG mistake. My next scan revealed a tumor the size of a grapefruit that grew out of my liver and attached to my diaphragm and peritoneum which they were able to remove thank God. Doing an earlier scan wouldn't have prevented the recurrence but it would have caught it sooner. Now there is a larger risk orbit spreading to other organs. I fired that oncologist.

[raym]

When I was stage III the schedule was a CT scan every 6 months. Unfortunately I did not have do that as I had a reoccurrence/spread in less than a year after my first surgery. Since HIPEC surgery in 4/12 I have had a CT scan every 3 months and recently a PET/CT scan. We went back and forth on the PET scan. Nothing is showing on CT but my CEA has risen a lot (up to 40 then down to 16, back up to 40, then down again). I asked the doc if we should do a PET scan. His opinion on scans is if they provide him information to direct treatment he will do them. But...since I asked about a PET scan and he does NOT do one it could come back to bite him if something shows later that could have been caught early on the PET. Nothing showed on the PET scan. So for now CT scans unless the CT shows something that needs to be evaluated more on PET.

I guess if my CEA was not elevated/trending up my scans would be back to every 6 months.

I would talk more with your oncologist. By the time symptoms show up for CC, things are usually pretty bad.