Worrisom & Scary

Unknown

I had some extra time this weekend, a rarity in and of itself ), and spent it reading some of the past posts as well as several new ones that have been added recently and I was extremely amazed and without a doubt concerned about how many posts that I read that mention recurrences without detection by either a CAT or a PET or one detects...another says its nothing? Most importantly though is that in most cases, it was slight CEA increases that alerted everyone to the possibility that something could be wrong.

As most of you know, Bert and I have been dealing with an elevated CEA since January of this year. Bert's CEA was never checked prior to surgery last August 2003 however, thereafter it had been consistently at 0.9 until December when he had a severe colon infection and very, very bad diarrhea...at which point it went up to 2.2.

In January, after switching oncologist, it was 5.9 and has continued to jump back and forth, taken every two weeks, between 5.9 and 8.2. Every single test possible, including recent colonoscopy while he is still on chemo has been done and results continue to be negative. Not that I'm complaining...I am truly grateful and happy for this and although his doctor continues to stay on top of everything (and he really does), he has shared with us that the only thing he can attribute it to is the chemo itself and Bert's CEA pattern is not consistent with recurrence...in other words, it's not jumping up and up by substantial amounts but rather keeps bouncing back and forth between the 5.9 and 8.2 with various numbers in between range. We don't know what else to do and I must admit, it does continue to worry me quite a bit...not panic, like in the beginning, but worry me nevertheless.

Any thoughts or suggestions would be welcome. As always, thanks for "listening" and being there.

Hugs,
Monika, who is once again toasting in L.A. where temperatures have been over 105 the last three days...ah, but she's off to Europe in 5 more days for some nice, cool weather )

Tessyann

monikaz I had to answer this one because this was just what happen to Ben... First place let me say CEA arent everything.. sometime its a good marker sometimes its not... like Ben last recurrance it never went up at all and CT never picked up his tumor till he obstucted and was doubled over.
And this time... now his CEA were rising... but were was the cancer ???? CT showed nothing... Pets showed activity but they kept saying it was more inflammation type... His colon doctor scoped him in July..all seemed well... but...He forgot to scope his rectum.. since Ben had a colostomy he focus on the colon in that area not the 6 inches left of his rectum. "BINGO" Ben start having a discharge from his rectum a bloody mix... so they decided another scope this time to the rectum area. and a biopsy later the cancer was found.. then a MRI showing more activity in his pelvic were his last cancer was that spread threw his bowel wall wrapping itself around his ureter causing him to lose most of the function in that kidney.
So see its very easy to be scared cause you just dont know..All these test arent perfect.
There is a new blood test out there but it doesnt tell were the cancer is or what kind it is.. We asked our Onco if he would give it to Ben and he told us its a waste of time because tho it might come back positive it wouldnt tell them what type of cancer it was so they wouldnt beable to treat it anyways.
Your best bet is... let your ocno doc know your worry... ask him to test more often... Pet scan atleast every 3 months if the CEA are still up there. Ask him about a Oncoscan also if it still climbing.. its a test that uses mouse antibodies.. but can only be done once.It can detect cancer in its very early stages. Its ashame tho sometimes it is just a wait and see till the nasty bugger shows it angry head like in Bens case.

Unknown

Tessyann said:

monikaz I had to answer this one because this was just what happen to Ben... First place let me say CEA arent everything.. sometime its a good marker sometimes its not... like Ben last recurrance it never went up at all and CT never picked up his tumor till he obstucted and was doubled over.
And this time... now his CEA were rising... but were was the cancer ???? CT showed nothing... Pets showed activity but they kept saying it was more inflammation type... His colon doctor scoped him in July..all seemed well... but...He forgot to scope his rectum.. since Ben had a colostomy he focus on the colon in that area not the 6 inches left of his rectum. "BINGO" Ben start having a discharge from his rectum a bloody mix... so they decided another scope this time to the rectum area. and a biopsy later the cancer was found.. then a MRI showing more activity in his pelvic were his last cancer was that spread threw his bowel wall wrapping itself around his ureter causing him to lose most of the function in that kidney.
So see its very easy to be scared cause you just dont know..All these test arent perfect.
There is a new blood test out there but it doesnt tell were the cancer is or what kind it is.. We asked our Onco if he would give it to Ben and he told us its a waste of time because tho it might come back positive it wouldnt tell them what type of cancer it was so they wouldnt beable to treat it anyways.
Your best bet is... let your ocno doc know your worry... ask him to test more often... Pet scan atleast every 3 months if the CEA are still up there. Ask him about a Oncoscan also if it still climbing.. its a test that uses mouse antibodies.. but can only be done once.It can detect cancer in its very early stages. Its ashame tho sometimes it is just a wait and see till the nasty bugger shows it angry head like in Bens case.

Hi Tessyann:

Thanks for your reply and the heads up. Bert's onc knows that I am worried...so is he to a certain extent and has never let his guard down. Since his operation back in August of 2003, Bert has had a total of 5 Cat Scats and 3 Pets, plus other kinds of blood work, etc., and everything keeps pointing negative. His cancer was right at the ileocecal value and there was nothing else at the time...not even a polyp anywhere, but like I mentioned before, four nodes were involved...local, but involved nevertheless. Bert is scheduled for another CAT June 7, which will be exactly 8 weeks from his last one. His CEA is not climbing but rather bouncing back and fourth between 5.9 and 8.2...sometimes it 6.5, next time it's 6.0 then it's 7.9, then is 5.9 again, and so on. It's driving me totally nuts.

Monika, who remains ever vigilant in L.A.

grandma047

unknown said:

Hi Tessyann:

Thanks for your reply and the heads up. Bert's onc knows that I am worried...so is he to a certain extent and has never let his guard down. Since his operation back in August of 2003, Bert has had a total of 5 Cat Scats and 3 Pets, plus other kinds of blood work, etc., and everything keeps pointing negative. His cancer was right at the ileocecal value and there was nothing else at the time...not even a polyp anywhere, but like I mentioned before, four nodes were involved...local, but involved nevertheless. Bert is scheduled for another CAT June 7, which will be exactly 8 weeks from his last one. His CEA is not climbing but rather bouncing back and fourth between 5.9 and 8.2...sometimes it 6.5, next time it's 6.0 then it's 7.9, then is 5.9 again, and so on. It's driving me totally nuts.

Monika, who remains ever vigilant in L.A.

Hi Monika, My cancer never showed an elevated CEA either time, so I don't really think it's perfect. My CEA was fine the first time I had cancer, and it when it recurred in January, it was still fine. I believe that some peoples CEA shows it and some don't. I wish you the best of luck. Everything sounds good, so far. But..I know it's hard not to worry. I will be praying for you both.
Love and prayers, Judy H(grandma047)

tanya99

Hi Monikaz
my mom has been diagnosed with stomach cancer stage 4 in sep 2003. she is 49 years old.Before and immediately after operation her CEA was 1.6. Then after first chemo it went down to 1.16 .In feb 2004 her CEA was 1.05.
In march she had infection in her intestines .one month after that her CEA was 2.1 and its increasing from past one month .Now she has CEA 6.9. Yesterday we did CAT scan and everything seems to be fine. I am so scared.

Hope everything will be fine. Take care

Unknown

tanya99 said:

Hi Monikaz
my mom has been diagnosed with stomach cancer stage 4 in sep 2003. she is 49 years old.Before and immediately after operation her CEA was 1.6. Then after first chemo it went down to 1.16 .In feb 2004 her CEA was 1.05.
In march she had infection in her intestines .one month after that her CEA was 2.1 and its increasing from past one month .Now she has CEA 6.9. Yesterday we did CAT scan and everything seems to be fine. I am so scared.

Hope everything will be fine. Take care

Tanya, I hope everything will be fine too! It seems that we are kind of in the same boat....Bert's CEA did this rising thing after his colon infection. Up until then, all was fine.

I know you are scared and I can't get it out of my mind either. We'll get through this.

Monika

StacyGleaso

Hi Monika,

You know, the progress you and Bert have made is amazing. Yes, I mean you, too, and not just him. Practically everyday you come here and I see your every emotion in your postings. I feel honored to be able to share all of the joys, fear, and sometimes anger you face as you watch Bert go through every test and procedure. I know exactly how Bert is feeling while he watches you watching him...he is relieved that he can be the one getting all of this done instead of you. That is exactly how I felt...I was almost relieved that this happened to me over any of my family, as I wouldn't want any of them to endure what I had to endure. I would easily take the proverbial bullet for any of them.

Ok, so onto the worry part...In all reality, I wonder if any of us affected by this are ever truly done worrying. It sometimes gets shifted to a "back burner" but never fully gets off the stove! The only advice I can give is to never lose hope. Never go a day thinking you wish you would have done anything differently. And always remind yourselves of how far you both have come through this experience. In my opinion, once you get over the diagnosis, the rest is simply details. Detection is the key to getting a handle on this.

My heart goes out to everyone in the active stages of this pain in the rear (!!!).

Keep the faith!

Stacy

Unknown

StacyGleaso said:

Hi Monika,

You know, the progress you and Bert have made is amazing. Yes, I mean you, too, and not just him. Practically everyday you come here and I see your every emotion in your postings. I feel honored to be able to share all of the joys, fear, and sometimes anger you face as you watch Bert go through every test and procedure. I know exactly how Bert is feeling while he watches you watching him...he is relieved that he can be the one getting all of this done instead of you. That is exactly how I felt...I was almost relieved that this happened to me over any of my family, as I wouldn't want any of them to endure what I had to endure. I would easily take the proverbial bullet for any of them.

Ok, so onto the worry part...In all reality, I wonder if any of us affected by this are ever truly done worrying. It sometimes gets shifted to a "back burner" but never fully gets off the stove! The only advice I can give is to never lose hope. Never go a day thinking you wish you would have done anything differently. And always remind yourselves of how far you both have come through this experience. In my opinion, once you get over the diagnosis, the rest is simply details. Detection is the key to getting a handle on this.

My heart goes out to everyone in the active stages of this pain in the rear (!!!).

Keep the faith!

Stacy

Stacey, I am so honored by your praise...really, I am! I don't exactly agree with you because there are certain days that I feel like I'm the horse just out of the gate again ) but then again, there are other days when yes, Bert and I have come a long, long way and still have a long way to go. Hell, it beats having a long, long, long way to go (LOL).

You hit the nail, I am sure, right on the head when you said you know how Bert feels when he's watching me watching him. The thought has so many times come into my mind that I could deal with all of this so much better had I been diagnosed and not him. And while I am grateful to God that to the best of my knowledge, I am healthy, can't help but sometimes wish that I could just take it all and make it go away.

I love you Stacey....all of you and I don't plan on giving up hope any time soon.

Hugs,
Monika in L.A. who's a natural born worry wart )

kstehman

I am new but when i read this it hit a very familiar chord with me. My husband recently began chemo for round 2 of the fight. The docs said after his surgery three years ago that they weren't too happy with the margins, tried to get it with radiation and chemo. he eventually was clear for 16 months then cea started creeping up, oct it was 6,nov 12,dec 16, jan 22... no other test showed anything till I twisted hubby's arm and made him go for a second independant opinion. we went to university of PA hospital for a cat scan. we had had 4 scans at our local hospital before that.It seems the bigger hospital the better equipment they have. But in my own research I have learned that cea can rise some from irritated bowels, indigestion ect...especially if the bowel has been shortened by surgery. Hope your worries don't have merit. Wish mine didn't but thats all I can do right now.Wish, hope and pray.Have a good time in Europe.