CSN Login
Members Online: 3

You are here

Clean scans, Buttt

lilpep1972's picture
lilpep1972
Posts: 80
Joined: Dec 2014

Hello all I hope an pray everyone here on this site is hangin in there and as strong as can be. I pray you all are enjoying this precious time of the year with your loved ones and this holiday brings sum laughs and joy into our lives. This time one year ago I was going into surgery as I was DX'd with stage IIIc in late Nov' 14.... Wow how that Father Time goes by. So many differnt thoughts go thru your mind and you go thru so many different phases.. Sadness, Frightened, Pissed off, helplessness , then relief and joy and some light at end of tunnel etc etc.. this past week I went back to my ONC for my 1 yr post surgery visit, it has also been exactly 6mnths since my last chemo session and bloodwrk. They put me thru every machine and test from head to toe. All my CT scans were clean and Dr saw nothing but then I get a call frm his nurse about my CEA. The last bloodwrk in July showed a 2.4 CEA level and it is now a 2.9  Thy said see you in 6mnths for next bloodwrk session and have a nice Christmas..  Does anyone have any input on why my CEA would rise but yet my scans are clean .?  I had assumed (and yes I KNW TO NEVER ASSUME anything) they went hand in hand.. Just not sure what to think or just enjoy the next 6months  since the last 12 were a nightmare..lol.. Thanks

Chris

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

Chris....

Enjoy life and forget about tomorrow and yesterday, live it for today.

Once diagnosed with cancer we all are made aware of the expiration date that we all have but never noticed before. It's always been there, so remember that.

Now that you have been reminded that you are only here temporarily, you can move forward with much more seriousness, if you choose to do so. Most of do not, however.

I prayed that I could live a few more years to settle matters and make things better for my wife; get my papers in order....

I lived a lot more than a "few years', but all my clutter remains.

I am presently faced with an operation that many do not survive. I could have taken the time I had been given to get things in order, but I neglected to do so, thinking I would live forever.

When you wake up tomorrow, do what you know is the right thing to do. Face your mortality head-on. Understand that life is not eternal, you too have an expiration date.

It's a wake-up call that none of us desire to face, but face it we must, sooner or later.

I lived more than 5 years past my prognosis, I'm overdue and being called.

You may live 50 years more than me. But know that you do not know that you will.

Don't live in fear, live with direction.

Be well, I'm pulling for you

John

 

ron50's picture
ron50
Posts: 1729
Joined: Nov 2001

I deduce from your post that you may not be doing so well. If that is the case then I can only wish you well and hope that things go as well as they possibly can for you. Cancer has continued to leave me alone but alas the rest of life keeps on attacking from all sides , all the best from an old timer.    Ron.

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



Normal
0






MicrosoftInternetExplorer4

/* Style Definitions */ table.MsoNormalTable {mso-style-name:"Table Normal"; mso-tstyle-rowband-size:0; mso-tstyle-colband-size:0; mso-style-noshow:yes; mso-style-parent:""; mso-padding-alt:0in 5.4pt 0in 5.4pt; mso-para-margin:0in; mso-para-margin-bottom:.0001pt; mso-pagination:widow-orphan; font-size:10.0pt; font-family:"Times New Roman";}

Cancer’s after effects….

After they ravage our body removing cancer that they can find, we continue to be ravaged, if not by more surgery or chemicals, it’ll be by the ramifications of both.

I’ve always been amazed at your strength Ron, and I hope Chris can get some helpful insight from the experiences of those that have managed to endure this debacle. Sometimes it helps to see just how far others have pushed the envelope; how far we can go in spite of a lousy diagnosis of this stupid condition.

I’ve been fortunate that I never had to fight the chemicals and radiation used in western medicine, taking a totally different route than anyone here, but it hasn’t been much different for me otherwise. Cancer and surgery steals from us, and once we lose body parts and organs, we suffer. I guess we all learn over time, that cancer cells can be the least of the problem; cause and effect…. With the effect often being worse than the cause.

Chris…. Not to depress you here, but you’re into a life-changing experience that may never seem to end. It’s not the end of the world, or your life, it’s just something different than you may have wished for.

Those of us (and there are more than you think) that have battled this and lived with this longer than predicted, will likely tell you the same thing: Live life. Enjoy it more. Don’t allow fear to stifle you or change your direction. You remain in charge of your life, as long as you take charge of your life.

When we first notice the “sell-by” date that’s been stamped on our forehead, we worry. Have no fear, it’s just a “sell-by” date, not the expiration date.

Not one of us knows what the expiration date is. Live Chris. You’ll do fine!

John

 

Trubrit's picture
Trubrit
Posts: 5222
Joined: Jan 2013

Not liking the sound of this. Can you start a new thread and share your woe. You know we've got your back, and will do all we can -though we know its limited for us - our end. 

Sue - Trubrit

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







Normal
0






MicrosoftInternetExplorer4

/* Style Definitions */ table.MsoNormalTable {mso-style-name:"Table Normal"; mso-tstyle-rowband-size:0; mso-tstyle-colband-size:0; mso-style-noshow:yes; mso-style-parent:""; mso-padding-alt:0in 5.4pt 0in 5.4pt; mso-para-margin:0in; mso-para-margin-bottom:.0001pt; mso-pagination:widow-orphan; font-size:10.0pt; font-family:"Times New Roman";}

Rather than post a new “waa-waa” thread, I simply added to my “blog” at http://74.115.230.41/tcm/tcm.html

and updated my new health status.

 

We all have our problems and we all must find our own resolve. We support each other in whatever way we can, but at times, it just isn’t enough.

 

Life is short; too, too short for many of us, and regardless of age….. we never desire to see it end.

 

Cancer isn’t the enemy; seeing the end of life coming, is.

 

Prepare for it. Know it is as real as life can be. It does not go on forever for anyone.

 

Live life for today; attempt to make it better for those to follow.

 

Never look back with regret for what you have done to perfect.

 

Be well.

 

John

sflgirl
Posts: 220
Joined: Jan 2015

John,

I read your blog.  You have difficult decisions.  Thank you for all your input here and to me on occasion.  I appreciate it.

No regrets.

All my best,

Andrea

 

traci43's picture
traci43
Posts: 775
Joined: Jul 2007

John - Wow, what a roller coaster ride you've been on.  I'm saddened by what you're going through right now.  It's a great reminder to all about second opinions and continuing to get colonoscopies/sigmoidoscopies. I hope that that the surgery goes well for you.  I'll be praying for you.

I've missed your occassional TCM posts.  The longer I'm around the more I'm dipping my toes into other modalities.  I have a friend that has also used chinese herbs to keep his bladder cancer in remission for many years.  I wish you all the best.  Traci

Trubrit's picture
Trubrit
Posts: 5222
Joined: Jan 2013

I am an the same boat as you, with a rising CEA. 

Right now, our CEA is still in range, and my Oncologist is not at all worried. I am though, and know how you feel. 

There really isn't much we can do at this moment other than lead a healthy life style (Honestly, I still fight with that) and watch. Watch and hope that the CEA drops, watch a wonder if it will continue to rise. 

Cancer has to get to a certain size before scans start to pick it up, so that is probably one of the reasons why you Onc is playing the wait and see game. Now, why he is waiting six months I don't know. I've always been on a three month schedule for blood work, six months after I got one year out from clear scans. 

I know there is no point in telling you not to worry. I found out my CEA had risen for the second time two months ago, and I worry every single day. Sometimes I fancy I can feel Cancer growing, but I'm sure its just imagination. What I don't do is let that worry control my life. I will wait until my next blood test (end of January) and we'll go from there. I enjoyed Thanksgiving, I will enjoy my birthday and Christmas, I will ring in the New Year and then I will see what is going on. 

2.9 is still in range. Keep telling yourself that and enjoy the Christmas season and pray for health and happiness as we move into 2016. 

Sue - Trubrit

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

CEA can fluctuate for a variety of reasons other than cancer, esp when the change is so small.  In some cases, it can even be due to having a different lab read the test results.  I get tested for another cancer marker, and it has moved up and down by a few points over the last four years, with absolutely no sign of more cancer.  

So I think if your doc isn't concerned, that you should try your best to set it aside as well, and enjoy the holiday season!

beaumontdave's picture
beaumontdave
Posts: 1069
Joined: Aug 2013

Don't they tie your future and sense of wellbeing to flipping numbers. Year 2 after colectomy my cea went from 4ish to forteen and everything, including a liver biopsy came up negative. Six months later another biopsy finally found the mets. Fast forward to now and my cea is 1.8 and my mind says yay, BUT, now it's got no where to go but up. Can't let that kind of thinking take hold, Chris, it will just eat you up. Cea moves around and isn't reliable unless it just keeps going up over time. John's right, face it, do what you need to, then put it on the shelf. Easier said then done, I know, but that's the battle. Luck to you, and John, and us all..................Dave

mom_2_3
Posts: 965
Joined: Nov 2008

Chris, 

 

At diagnosis my CEA was over 300.  By the time I had surgery 4 months later my CEA was 100.  After my liver resection my CEA fell to the 2.1-2.2 range.  It hovered in the range of 2.2 anod 2.5 for about 2 years.  I did have an occasional spike to 2.8 and even 3.2 but the numbers came down again.  in the past couple of years my CEA has normalized around 3.4.  I have plotted my numbers in Excel and have seen a slight increase over the past 7 years with occasional spikes.  My doctor told me that the CEA is affected by intestinal distress (perhaps explanation for the spikes) and also age (explains the gradual increase over time).  Here I am, seven years since my diagnosis of Stage IV and 6 1/2 years since my surgery and NED.  Despite those spikes way back when and that gradual increase I still remain NED.  My last scan was this last June and my next is June 2016.

It is hard right now to cut and paste all my CEA numbers from the hospital portal but if I could, you would see a lot of variation in the numbers and hopefully be reassured that this slight increase is not concerning for you.  But I live in the world of post-cancer fear and realize that it is very difficult to simply forget about your worries and move on.  Perhaps you could ask for another CEA test in 2 months to help reassure you.  When my doctor finally released me to yearly scans in my 5th year I was very scared, and my doctor and I agreed we could relieve my anxiety by having a CEA test every 2 months.  I have since become more comfortable about getting CEA every 6 months.  It was a gradual process.  

 

Wishing you peace, 

Amy

Trubrit's picture
Trubrit
Posts: 5222
Joined: Jan 2013

It warms my heart and soothes my qualms to read this post. 

Thank you for being one of the many years NED friends who continue to post. It means the world to those of us just starting out and just starting our own NED part of the journey. 

Sue - Trubrit

NewHere's picture
NewHere
Posts: 1205
Joined: Feb 2015

Not sure if you caught this thread, but some information and discussion also there

http://csn.cancer.org/node/298476

Mine has not really gone radically up or down.  Between 6-8, and my oncologist said some of it could even be chemo related, even after chemo ends.  I think my doctor has me on 3 month bloddwork/scan right now.  (I am also III C, tons of lymph nodes)

Try not too worry too much.  Yeah, I know, easier said than done.  ;)  

It is wild how time flew and stood still since I got diagnosed.  I am now over 10 months out from my surgery, 11 months since doctor called and said "Um, call me immediately, it is urgent."

Hang in there.  

lilpep1972's picture
lilpep1972
Posts: 80
Joined: Dec 2014

This board is such an amazing place with the most amazing people.. God was definitely looking over my shoulder tht night, the day after my surgery sitting in Sloan Kettering. I had never once before in my life spent a night in a hospital the worse thing ever, a few stitches an dislocated shoulder.. Anywhooo as I looked around for sum others in my lonely dingy floating along I saw this site an decided to join after reading a few posts frm Sue and others , it was a a sole blessing... I was at a major fork in my life and this site helped me take the right path.. I was actually in a great place after chemo until the scans.. This disease is such a roller coaster and I'm trying to find the happy median of just totally blocking it out but also not straying to far.. I have to say I lived a very fast life here in NYC. Working on Wall St by day and DJ'ing at clubs by night.. I dunno if it all caught up to me and this was life's way of telling me "slow down" .. Either way In reading all of your posts I will try my best to absorb everything you all wrote an find that balance..  I want to thank you all and pray every day God makes you and your families laugh an smile daily..  I wish you all a blessed an happy holiday. I'm going to just live my life and enjoy everyday. To hell with living each day in fear of the future and worrying about sum # 

 2 point this or 4 point that.. NO MORE!!!! .. Chin Don to all as us Italians say :) 

traci43's picture
traci43
Posts: 775
Joined: Jul 2007

With that being said, your CEA can go up and down based on other non-cancer related things.  For me scans don't show anything until my CEA is at least 7 or 8, then the tumors are big enough to be seen on a PET or CT Scan.  Right now I've been enjoying 18 months of low CEA, but for the last 6 months or so it goes up and down between 1.8 and 2.8.   This is the longest period of NED in my 8 1/2 year journey. Not sure what the CEA changes mean,  usually once it starts up, it continues to go up.  So, I'm going to try to keep on thinking positive and taking care of myself.

I would enjoy the holidays and get a blood test in 1-2 months, not wait 6 months, but that's me.  Hopefully a recheck will show your CEA back down to 2.4.  Good luck, Traci

Subscribe to Comments for "Clean scans, Buttt"