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Still looking- found it!!!!!!

cheeks964's picture
cheeks964
Posts: 54
Joined: Nov 2011

Hello everyone,

I've been on here before. Doctors and I are still stumped on why my CEA lever is rising.
I had a colonoscopy back in 9-2010, and they found a polyp they thought there was no worries, it was very small, two days later they called and said there was cancer in it, it was in my rectum at the very bottom close to the exit. I have been going in to see the rectal surgeon since he had went in after the colonoscopy and has a rectal extraction, they took any surrounding piece out where the polyp was. My cea has been rising since. It was at 3 then 6 then 12, then 24 then 33 and now almost 2 years later at 53. I have had every three months a pet scan/cat scan/mri and anal ultrasound, numerous flexsigs every three months, another colonoscopy (all clear) and my last pet scan was in March, they found a smalll (garbonzo bean size nodular) did not come up that it was cancer in the pet scan, pathelogy said to just watch closely, i'm getting it biopsied this friday. oncologist sent me to ucsf to emily, a top colon cancer specialists, i'm not genetically prone to cancer, no one has it in my family. She checked me anally and now i'm going back there again for another mri and ultrasound. I feel nothing, thank goodness, pray every day. I never had symptoms to have the colonoscopy in the first place in September of 2010, i only went in cause my insurance was ending. Still do not feel anything. Keep praying. Any comments or anyone have had this or does anyone know someone in my situation. please reply...

steveandnat's picture
steveandnat
Posts: 887
Joined: Sep 2011

The mysterious cea number. I know we have to watch it but sometimes it doesn't make sense why it goes up. It looks like your dre are testing for things. Mine went up when I had an infection so that could be a possibility. Pray everything turns out good. Jeff

k1
Posts: 220
Joined: Dec 2009

It sounds like you are doing all the right things if they are checking by various types of scans and not relying on just one type. I say this because my liver metastasis never showed up on CT scan or PET scan but did show up when they did an MRI. I wish you the best. I am glad you are seeing a new specialist too.

K1

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

The biggest problem with cancer, is that it strikes fear so terribly
severe, that the one diagnosed continually looks for anything
that may indicate it's still a problem.

Did we worry prior to diagnosis? Most of us didn't even know
what 'CEA" meant.... and aches, pains, and other problems
just came and went without us falling into the hell of fear.

The "CEA" marker is just one of many markers that a physician
uses to help with his diagnosis; singularly, it means very little
if anything, for diagnostic purposes.

While it's beneficial to be aware that cancer has no cure to date,
and beneficial to use that awareness to prepare for all "worse-case
scenarios", it should not be reason to give up hope, or sink into
a state of despair. I was DX'd in 2006. Phil has been around longer,
and so has quite a few others.

And no, that doesn't mean that cancer is an easy trip, or that it can
somehow be magically cured, but it should make you aware that
a diagnosis of cancer -does not- suddenly give you a death sentence.
Consider it a "wake-up call"; something that raps you in the ribs,
telling you that life isn't forever, so pay attention.

Some people don't get that "wake-up call", they just leave in a fiery
accident, or a heart attack.... (See...? See how lucky -we- are?)

Don't sweat the "CEA" numbers, just be aware that not one of us
was born to live forever. We're only here on loan... Sometimes
a long-term loan; sometimes a bad check..... (haha)

Be well,

John

cheeks964's picture
cheeks964
Posts: 54
Joined: Nov 2011

Thanks everyone, you guys are awesome.

cheeks964's picture
cheeks964
Posts: 54
Joined: Nov 2011

Thanks everyone, you guys are awesome.

joemetz's picture
joemetz
Posts: 493
Joined: Nov 2011

John

I absolutely LOVE the last 3 paragraphs of your post.

That's some fantastic stuff and a great way of thinking and living.

my best

Joe

PhillieG's picture
PhillieG
Posts: 4912
Joined: May 2005

You summed things up nicely.
I liked the 4th paragraph the best :-).
-phil
Hope all is well

Jaylo969
Posts: 827
Joined: Jan 2010

I like them ALL John. Right on target.

Cheeks ....welcome! Your doctor might be able to reassure you as to the CEA. I still don't quite get the CEA thing myself. Mine never went up even before the tumor was removed.It is not as low as many people on here who have active cancer but my oncologist says she is not worried at all.

Best wishes to you.
-Pat

tootsie1's picture
tootsie1
Posts: 5065
Joined: Feb 2008

Praying this is just one of those flukey things!

*hugs*
Gail

PhillieG's picture
PhillieG
Posts: 4912
Joined: May 2005

I'm not sure I know you well enough to call you that but you chose the screen name :-)
CEA - it should stand for Can't Explain Anything (for certain). Some have low numbers like me, never above 8.4,, currently at 2.1 with small nodes in my lungs. I'm stage IV colon cancer since 2004. Others have very high numbers but may be NED or doing well. Smokers naturally have a higher normal CEA of < 5.

You sound like you're doing the right things, we all need to heed the wake up call and be proactive. Follow good habits, seek other opinions or therapy as needed.
Hope all went well with biopsy, you're in my thoughts...
-phil

cheeks964's picture
cheeks964
Posts: 54
Joined: Nov 2011

Hello everyone,

so my biopsy came back that there was cancer in it. The doctor is thinking that when he did the resection in 2010 a little piece went over to my sacrum. All those pet scans and anal ultra sounds and ct scans and finally they found the nodular on my sacrum in february, it was the size of a bee bee and now in march it was a size of a garbonzo bean. I never had radiation or chemo. So now he wants to do chemo and radiatiion before the surgery. do you think i'm going to have to have a lot of rounds of chemo. i'm so scared.
and how are they going to do surgery on my sacrum, the nodular is on my sacrum. i go to the colon rectal surgeon on tuesday and the oncologist too. i scared to get sick from the radiation and the chemo. does everyone get sick. i can't believe it took this long to find it. please advise would be great.

smokeyjoe
Posts: 1428
Joined: Feb 2011

I suppose you'll find from your oncologist which chemo. treatment they're going to give you. Everyone seems to react to chemo. differently. I've never had radiation so I can't comment on that. But, there are others who have had a lot of different treatments and I'm sure you'll get some good advice on how to deal with any side effects. The oncologists will give you different meds. to deal with side effects...you take them before treatment. Keep us posted.

cheeks964's picture
cheeks964
Posts: 54
Joined: Nov 2011

anyone choose to do the homeopathic/wellness holistic route verses chemo and radiation

cheeks964's picture
cheeks964
Posts: 54
Joined: Nov 2011

anyone choose to do the homeopathic/wellness holistic route verses chemo and radiation

smokeyjoe
Posts: 1428
Joined: Feb 2011

There have been a lot of discussions on this board regarding supplements, diet, herbals, juicing and such. Everyone has their own individual approach to this disease. I think most have done the holistic approach AFTER they've finished chemo. or radiation treatments to boost their immune system and live a healthier lifestyle. Some have done this during treatment. Everyone's approach is different. With an active growing tumor I don't think you are going to find anyone on this board (I could be wrong) that is going to suggest that you not follow oncologists suggestions.

Sundanceh's picture
Sundanceh
Posts: 4408
Joined: Jun 2009

Hi there - I know you're scared, but let's take a look at some of this and try and make some sense out it.

Q: "do you think i'm going to have to have a lot of rounds of chemo. i'm so scared."

It's really hard to speak for your oncologist as to what his protocol will be. It sounds to me like his goal is to shrink the tumor with chemo and bust up its DNA replication with radiation.

The chemo cycle he prescribes could be as little as 3 of them, or he might do 6. After chemo protocols are usually 12 treatments over 6-months. He'll just have to tell you what his approach is and what response he is expecting to see.

As for radiation, I would anticipate 15 of those as a guesstimate, but it could go as high as 25-30...again, just depends on what they are trying to achieve.

After radiation, you will probably have a 6-week lag before surgery...this will allow some of the tissue to heal prior to surgery. I did not have cancer in the sacrum but I know of a guy who had, his was stage IV, so his treatment and surgeries were aggressive. He does not frequent this board routinely and he has recently had another recurrence.

I learned about this experience through him and why I can't speak for him, I'll try and do my best to paraphrase what I think he would say. First, the sacrum is a tough spot...it's right there at the base between the butt-bone and the spine.

I'm not going to mislead you...radiation can help but it is surely going to have an effect on you as well....and it won't be overnight or a year, it will be permanent as radiation's intent is to kill or damage the tumor cells ability to replicate. As much healthy tissue would be spared but there is always some overlap - so be prepared.

I've had radiation 55x now....25x to the butt and both hips and up my back....30x more to my right lung. There will be collateral damage, there is just no getting around it. You know what a sunburn does to your skin, so this will be happening on the inside.

I would imagine there will be some stiffness in your joints and that movement like getting up and down or turning will be somewhat painful. Radiation continues to work long after the treatment has stopped, so issues you may experience could intensify or stay steady for quite some time and perhaps for life.

The procedure itself is not painful....they will chart you and mark the spots...they tatoo you to mark the area to map their coordinates. They will make a form for you to lay still in for the treatments. You come in and do the treatments and the techs will position the machine to various points where it needs to go. Some of it is automatic while the table rotates and they might come in to make some positional changes etc. etc.

Radiation is cumulative - it builds the toxicity up steadily with each dose. It's usually about 3 weeks or 15 treatments in when you start to notice and feel the effects. It's very fatiguing and you will be exhausted, tired beyond anything you've ever been before. My advice is to rest as much as possible - your body will call for it and you will need to listen to it. Just rest and sleep - get up when you can, that type of thing.

The extreme fatigue will follow you up to a month after treatment stops....slowly, you will feel your strength returning to you. So, don't panic...it's a heavy treatment and it takes some time to recover from that.

Now, as to chemo, depends on what chemo they give you...they each have their own set of side effects....each of us seems to handle those differently. Some do well, while other folks have it rougher. Folfox is known for cold sensitivity in the feet and fingers and especially the throat, where you can't drink cold liquids, only room temp or perhaps heated beverages.

Neuropathy is a result of Folfox and depending on how many, the side effects could be temporary or perhaps lasting. Folfiri is different, diarrhea and cramping are side effects, most people lose their hair with this drug, or thin severely. It's highly fatiguing too, nausea etc. etc.

Both of those drugs are effective at reducing tumors though. None of us want to be sick, but since we all react differently from everything from alcohol to aspirin, there is no way to know how you react until you do them. Your onc will have medications to help with the side effects - just report all of your symptoms and complains to him, so it can go on the record and they can address them.

I'm a believer in the truth - as this helps us to better wrap our minds around what we are dealing with, so we can gear our minds to fight. I didn't want to sugar coat this or tie a bow around it to make it look better. It's rough, no doubt about it. All of us have done it and many of us have done it more than once.

I've had cancer 3x and walked away 3x - I've been in the battle for 8-years now and am still standing going strong...still work etc etc. There have been many challenges but we can talk about that later...I don't want to overload you too much.

But, I believe we are doing a service by telling you what you MIGHT face, so that it does come as a surpise like it did too many of us - who did not have this forum when we all started out.

Unfortunately, the doctors don't give us a heads up and give us any warnings to the stuff they have us do - they wait for the patient to bring the problem to them. Well, this post is going to give you a head start on what your doctor - and many, many doctors lack the courage and conviction to tell us beforehand.

We're all adults - and as such, can handle the truth - but for reasons of liability or whatever, they shade or color the truth, if not outright omit information that would help us.

Lastly, as for the holistic approach, that is certainly an option. You would have to ask yourself if you feel comfortable enough to have this as the main weapon in your arsenal. Most of us fight a convential battle - some have mixed in some alternatives with traditional treatments etc. etc.

Everyone has to make their own choice - there is no right or wrong way - only a way. There is no single answer to cancer. What works for some - wont' for others.

Wishing you the best as you go forward - be sure to come back often and post your questions and results - and we'll try and help you if we can.

-Craig

cheeks964's picture
cheeks964
Posts: 54
Joined: Nov 2011

Hello Craig,

Thank you so much. I will be in contact after i go to my visit with the colon rectal surgeon and onc on tuesday.

Thanks again,
Have a great weekend.

cheeks964's picture
cheeks964
Posts: 54
Joined: Nov 2011

Hello Craig,

Thank you so much. I will be in contact after i go to my visit with the colon rectal surgeon and onc on tuesday.

Thanks again,
Have a great weekend.

cheeks964's picture
cheeks964
Posts: 54
Joined: Nov 2011

Hello Craig,

Thank you so much. I will be in contact after i go to my visit with the colon rectal surgeon and onc on tuesday.

Thanks again,
Have a great weekend.

cheeks964's picture
cheeks964
Posts: 54
Joined: Nov 2011

Hello Craig,

Thank you so much. I will be in contact after i go to my visit with the colon rectal surgeon and onc on tuesday.

Thanks again,
Have a great weekend.

cheeks964's picture
cheeks964
Posts: 54
Joined: Nov 2011

Hello Craig,

Thank you so much. I will be in contact after i go to my visit with the colon rectal surgeon and onc on tuesday.

Thanks again,
Have a great weekend.

cheeks964's picture
cheeks964
Posts: 54
Joined: Nov 2011

Hello Craig,

Thank you so much. I will be in contact after i go to my visit with the colon rectal surgeon and onc on tuesday.

Thanks again,
Have a great weekend.

cheeks964's picture
cheeks964
Posts: 54
Joined: Nov 2011

Hello Craig,

Thank you so much. I will be in contact after i go to my visit with the colon rectal surgeon and onc on tuesday.

Thanks again,
Have a great weekend.

cheeks964's picture
cheeks964
Posts: 54
Joined: Nov 2011

Hello Craig,

Thank you so much. I will be in contact after i go to my visit with the colon rectal surgeon and onc on tuesday.

Thanks again,
Have a great weekend.

cheeks964's picture
cheeks964
Posts: 54
Joined: Nov 2011

Hello Craig,

Thank you so much. I will be in contact after i go to my visit with the colon rectal surgeon and onc on tuesday.

Thanks again,
Have a great weekend.

cheeks964's picture
cheeks964
Posts: 54
Joined: Nov 2011

Hello Craig,

Thank you so much. I will be in contact after i go to my visit with the colon rectal surgeon and onc on tuesday.

Thanks again,
Have a great weekend.

smokeyjoe
Posts: 1428
Joined: Feb 2011

Craig, nice reply, well put. I have a question not sure if you can answer it Craig...but didn't Rickmurtagh have a similar thing and it ended up being some kind of infection that behaved just like cancer. They didn't know what it was until surgery...have not seen him post in ages. Cheeks have you gotten a second opinion, maybe second set of eyes will give a different perspective on this.

cheeks964's picture
cheeks964
Posts: 54
Joined: Nov 2011

I just started seeing my oncologists and i also went to ucsf and all 3 have my biopsy pathlogy report. I see two of them tomorrow.

I'm just wondering i work and i have to drive and i hope i can do all of this and drive and work too

cheeks964's picture
cheeks964
Posts: 54
Joined: Nov 2011

I just started seeing my oncologists and i also went to ucsf and all 3 have my biopsy pathlogy report. I see two of them tomorrow.

I'm just wondering i work and i have to drive and i hope i can do all of this and drive and work too

cheeks964's picture
cheeks964
Posts: 54
Joined: Nov 2011

I just started seeing my oncologists and i also went to ucsf and all 3 have my biopsy pathlogy report. I see two of them tomorrow.

I'm just wondering i work and i have to drive and i hope i can do all of this and drive and work too

smokeyjoe
Posts: 1428
Joined: Feb 2011

Oh!! Okay, so you had a biopsy done?? I thought maybe it was showing up on scans. Let us know what they are recommending as a plan of attack. Best of luck at your appointments...try and take notes if you can.

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