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xmomtofourx

scouty's picture
scouty
Posts: 1976
Joined: Apr 2004

I think your question on Bobby's CEA numbers thread deserved it's own so I cut and posted your question so folks other than I can give our opinions.

Your post:
Bobby, good luck I hope your numbers stay low and you can finally see the end of this. Secondly, I'm just curious about all this myself. If you have the surgery and your cancer seems to be gone should you still be getting your CEA tested and any scans done? My surgery was in June, my last CEA testing was in Aug and my Oncologist says I don't need anymore more done at all and has completly released me...I worry if this is right and if I should be having more done than just a yearly colonoscopy.
(sorry Bobby, didn't mean to highjack your thread).

Before I say bad things about your doctor (trust me, I am biting my tongue) I have a few questions about your situation. Sounds like you might have been stage I so no chemo before or after surgery? What was your CEA before you surgery and what was it in August? All in all just give us a little more about your situation so we can be more helpful.

My gut is telling me to advise you to find another doctor that wants to make sure you remain cancer free. I can't believe an oncologist is just letting you go like that but will hold off until I learn more.

Lisa P.

xmomtofourx
Posts: 44
Joined: Sep 2010

For replying to me. Believe me, I have had a few not so good things to say about my dr and have bit my tongue more than once!
Ok, I'm 46, (45 at diagnosis). I was a High stage IIB, tumor in my sigmoid, went thru my colon wall but not into my lymph nodes. Surgery removed the tumor then had another surgery 6 days later to remove my appendix but they don't think that was connected. No chemo before or after surgery. Not sure what my CEA was since at the time I was still clueless on all this and didn't know to ask, GI did say it was high thou. Have talked to my primary care who called oncologist and asked what should be done...he said NOTHING more was needed! Except IF she wanted, a rectal exam could be done every 6 months. (of course that showed nothing when I had lots of bleeding and before the surgery so I wouldn't necessarily expect it to show anything now!) She does plan to do a CEA when I go back to her in March but otherwise no one is doing anything until June when I will go back to GI and have a colonoscopy.

One thing that did not impress me about the oncologist was when asked how I would tell if they got all the cancer or not since it went thru my wall his reply was..."you won't, by the time you know it will be to late and there will be nothing you can do." Now I know they need to be honest but geesh, baseball bat was not needed!!

I have seriously considered finding someone else but just want to make sure I'm not overreacting first and that this is what I should be doing. Thanks for any input!

Bonnie

Annabelle41415's picture
Annabelle41415
Posts: 6510
Joined: Feb 2009

You better be finding you a new doctor NOW. This type of attitude could put you right in the grave (sorry to be so blunt). You should be monitored for the first 5 years. Also try to find a doctor not in his office as they might all be that passive. I'm sorry but getting a rectal exam isn't going to help if you have a problem higher up in the colon. Scans, blood tests and doctors appointments are the best preventative cures. Good luck on finding another doctor. Like Donald Trump says "YOU'RE FIRED."

Kim

xmomtofourx
Posts: 44
Joined: Sep 2010

So I'm not just over reacting then?! He kept telling me over and over I needed to be watched "closely" but then after only 3 visits it was See ya...hardly even giving me a chance to asorb anything he said or ask a question. I just felt so dismissed and confused. We live in a tiny town in NH so the drs nearby are limited but I have had a few people give references to a place not to distant that I want to check out, maybe they have someone there with a clue.
Thank you Kim

Bonnie

Patteee's picture
Patteee
Posts: 950
Joined: Jul 2009

no, you are NOT over reacting. Your oncologist made it sound like you were staged at zero or at the most 1. IIB isn't a stage to take lightly and nuts to the doctor who does. I would think 3 month CEA, regular CT scan and colonoscopy should be the very least. Example: I was a 3B- after surgery, 6 months of chemo, then a CEA, CT scan and colonscopy.

Then every 3 months a CEA (if it had ever risen then they would have taken the next step of a CT scan), a yearly CT scan and yearly colonoscopy. I am now 2.6 years out from the initial dx and I get CEAs every 6 months, CT yearly and colonoscopy every 5 years.

This is the proactive way. Your doctor is taking the "lets wait until it spreads and really becomes a problem" way. This is SO TOTALLY not necessary!! And if your oncologist can't work with you on that, then time to move on to someone who will!

I know you aren't every close to anything- but think in terms of it being an appointment every 3 months- hopefully that will allow you to think about going somewhere where they know how to deal with colon cancer!

xmomtofourx
Posts: 44
Joined: Sep 2010

Thats exactly the attitude the dr seemed to have, lets wait and then oh well! I don't know that my cancer will come back, and I pray it won't but by some of the stories I have read no one can really know and I don't care to wait till its to late to find out.

Every 3 months isn't that bad and I can manage to travel a bit,(I hate, hate driving far) its worth it...I'm worth it! My kids and husband are worth it!
Thank you Patteee

Bonnie

scouty's picture
scouty
Posts: 1976
Joined: Apr 2004

I totally agree with Kim. Your oncologist sounds like John Edwards twin brother, a real pr33ck. So many of them forget that they "work" for us!

Where do you live? Maybe someone here can recommend someone. You need to tell your GI to stop referring people to that oncologist. And be sure and ask about your CEA, I don't think high thousands is right but if it is, your oncologist should have his license taken away.

You should be having a full blood work up, scans along with the flex sigmoidoscope (rectal exam) now that you are at your 6 month since surgery mark. Demand it.

One of my best friends here was told her GI symptoms were due to menopause and put her on anti-depressants. Needless to say by the time she got a second opinion, she was stage III and soon was stage IV and lost her battle in 2008.

Lisa P.

LivinginNH's picture
LivinginNH
Posts: 1458
Joined: Apr 2010

Oh my, and I thought only Bobby's doctor needed to be fired for his arrogance and recklessness, but here's another one! xmomtofourx - I live in NH too, so you may send me a PM if you'd like. We also just fired our MGH onc. and are now looking for one at Dana Farber in Boston - which is exactly where you should be going, and SOON!!! (Btw, two MIT researchers told us yesterday that they would only send us to Dana Farber since D.F. is doing all of the new clinical trials there - and not to go to MGH.) Take care, Cynthia

xmomtofourx
Posts: 44
Joined: Sep 2010

Sorry Cynthia I have no idea how to PM on here, but I am in southeastern NH. Sad to hear there are more drs out there like that, I'm glad you found someone else. I have heard good things about Dover Oncology which is where I think I may check out next, don't know if you might know anything about them or not but references have been quite good so far. My husband works in Boston so we have both dealt with MGH, I'm so not impressed, it may be a great place and they have some very smart Drs but their way of dealing with things is not for me. Good luck at Dana Farber, I hope things work out for you there.
Bonnie

Jaylo969
Posts: 827
Joined: Jan 2010

A year ago I had surgery for a malignant tumor in my ascending colon.My appendix, tubes, and ovaries were also removed as a precaution. Like you, my tumor went through the colon wall but no evidence of it infiltrating lymph glands. I was staged II A/B.

My onc. told me it was my decision of whether to have chemo or not. She thought that it *might* be of benefit to me but it was entirely MY decision. I chose to have it. While in chemo I had bloodwork done every 2 weeks and now after chemo I see the oncologist and have bloodwork every 3 months. I had a CT scan of chest, abdomen, pelvis 3 months post chemo. I had a colonoscopy 6 months after surgery....I'm just sitting here trying to figure out what the heck your doctor is thinking of! I just don't think his actions and his way of thinking is acceptable and if it were me, I'd fire him and get someone who is interested in my life.

No, you are NOT overreacting!

Best wishes,
-Pat

xmomtofourx
Posts: 44
Joined: Sep 2010

All of your stories are so amazing, you've gone thru so much. We have lost 8 people to cancer this year including my birth mother and my father-in-law, plus a cousin just last week. My FIL also went to the same oncologist which makes me wonder if he was being treated as he should have been and if he could have lived longer....I guess its to late for him now but I am not one to lay down and roll over. I have survived strokes since I was 22 and have dealt with idiot drs since then who didn't have a clue how to deal with things and what to do so I guess I'm just really discouraged and don't have much trust in Drs anymore, this is not helping!

Now that I have a true opinion (thank you all so much!) on that I'm not over reacting I will look around and see if I can get switched to someone else who hopefully will know what they are really doing.

Pat, are you glad you did the chemo? You sound about the same stage I was thats why I'm wondering. On my first visit the oncologist said I *could do chemo but he VERY strongly (over and over) suggest that I didn't, it wasn't worth it as it would only up my chances 2% at the very most, if that. Now I wonder if I should have done it.

Bonnie

LivinginNH's picture
LivinginNH
Posts: 1458
Joined: Apr 2010

Hi Bonnie,

To send a private message: Go to the brownish tab on the left side of the message board and click on "CSN Email", then click on the "write a new message" box; then in the "TO" box, type in LIVINGINNH or whomever else you'd like to chat with, type your message and click "Send Private Message". Don't forge to update your "About Me" page to accept PM's. (See the "Click here" line under the main heading "Cancer Survivors Network" to access the page. Take care, Cynthia

xmomtofourx
Posts: 44
Joined: Sep 2010

Thank you Cynthia, I will try that.

Jaylo969
Posts: 827
Joined: Jan 2010

Hmm... truthfully, I have mixed emotions about it. I know me, and I knew that if I didn't have chemo and I had a recurrence I would be kicking my own butt into next year.I also knew that if it recurred and I had done everything that I knew to do then I could accept it better. But, the chemo was very hard on me and I actually only made it through 9 rounds and my onc stopped it, saying it wasn't worth it. My onc gave me better percentages than yours; mine said 7%, but of course that was with the understanding I would be given Folfox. After we dropped Folfox and I was just taking Xeloda that lowered the percentages to about 2-3%.

I would advise you not to worry about what you coulda', woulda', shoulda, done about chemo. It is kind of a crap shoot and there is such a grey area when it comes to stage II. They will usually admit that they aren't sure if chemo is warranted with stage II's.I was in shock, scared and went for the big guns but not everybody with stage II does that and they seem to be doing as well as I am and in some cases probably even better.

The important thing now is I really think you need to be in the care of a more knowledgable physician.

Take care.
-Pat

xmomtofourx
Posts: 44
Joined: Sep 2010

You sound a lot like me, and had he really given me a chance to say yes I may have done the chemo as well just as a precaution being scared and in shock also. It was such a confusing and scary time I didn't know what I was saying half the time.
I guess we really can't worry about the whatifs and just face the future and do the best we can. Thanks Pat.

KathiM's picture
KathiM
Posts: 8077
Joined: Aug 2005

Including your birth mother. You are definately in the 'hereditary' group....at least at a higher risk....one to be watched.

Although, I will say that my CEA, even before any treatment, was .7 Never got higher or lower. So, it was not a good indicator, but my onc, who has released me, orders one every 6 months. Her theory is that if it starts climbing now, the bells need to go off...

I am now 6 years since dx. No reoccurance. Almost 5 on the breast cancer that followed. Yes, my grandfather died from colon cancer, and my mom has had endometrial and breast cancer. AND my full blood sister fought anal cancer 2 years after I was finished...

Find another onc. Even if it were just (which IMHO is not all) because you don't feel good with this guy...

Hugs, Kathi

xmomtofourx
Posts: 44
Joined: Sep 2010

cancer was not the same as mine, she had lung, liver and jaw, possibly due to smoking but none the less it was still cancer. The reason I put off having a colonoscopy for so long was because she also had diviticulosis and colitus which I figured was probably what I had so I could have caught my cancer much sooner had I just known but at my age it sure was not what I expected!!

I hadn't heard of a CEA not changing at all but I guess that is sure something to watch for if it did. Congrats on 6 years, thats great but I'm so sorry for all your family has gone thru and hope things improve.

Thank you Kathi.

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

I think any invasive procedures, and/or life changing treatments
or conditions deserve second and third (or more) opinions.

It'd be in your best interest to make some appointments and get
those "other opinions" as soon as possible.

Also, Don't overlook the ability of the UMass Cancer Center in
Massachusetts. They're pretty well advanced, and can do wonders.

All that said.....

Re:
"On my first visit the oncologist said I *could do chemo but he
VERY strongly (over and over) suggest that I didn't, it wasn't
worth it as it would only up my chances 2% at the very most, if
that.
Now I wonder if I should have done it."

It's very difficult to find an honest and straight-forward physician
that doesn't pull punches. He's telling you what his experience
and learning has provided. The risks of chemotherapy are not to
be taken lightly. All chemotherapy drugs are carcinogenic, and
all can have permanent, debilitating side effects. A 2% advantage
isn't an advantage at all, if the results are going to be more damaging
than the cancer.

Also keep in mind, that he was also (likely) acknowledging that
the "2% advantage" may only provide a few months more of life,
than if one did not take the chemo. Most all of chemotherapy's
"success" is measured in months, not years beyond the individuals's
life expectancy with cancer.

If he had weighed all that, and decided that not doing chemo was in
your best interests, then he was being honest with you in his archaic way.
But lousy bedside manners isn't always a great reason to fire a physician.

Get other opinions as soon as you can, but do yourself a favor, and
don't burn any bridges along the way.

Best wishes for your better health and looooong life!!

John

xmomtofourx
Posts: 44
Joined: Sep 2010

Thank you John, all good points and good advice.

Lori-S's picture
Lori-S
Posts: 1287
Joined: Sep 2010

It's your life ... not the doctor's life. If I were you I would definitely get another opinion from a doctor not connected with the one you saw previously. The fact that your tumor went through the colon wall puts you at higher risk and most oncologist would have suggested chemo to make sure that if there was any possible seeding the cancer cells were taken care of. Definitely also seek to have a CEA draw and maybe even a CT scan if the CEA is above normal. Sorry but, any doctor who was so nonchalant about my cancer would not hold any respect in my mind.

Just as a reference, I had a rectosigmoid tumor that went through the wall, attached to the abdominal wall and along the colon wall then perforated the small bowel and caused obstruction in both my colon and small bowel. I was originally staged as a IIc because no removed lymph nodes showed cancer at the time of my pathology report. It is now 7 months later and I've now been told I am a stage IV because I have distant lymph nodes (near my liver) and bone spots near where the tumor had come out of the colon. I never had any lymph nodes infected near the site of my tumor at all. Following surgery I too was told I could have or not have chemo - it was my decision. I first choose not to have it based on the nonchalant way my first oncologist decribed the situation .... but, once I got and read my path report and had 2 CEA draws on my own that showed an increase in my CEA, I went to a new oncologist. Thank goodness I did.

We have to be proactive about our care. Knowledge is power. I would say that you should have regular CEA draws and CT scans if anything look suspicious. It's a lot easier to stay on top of things than to try to play catch up with cancer.

I will be hoping that you get another opinion and CEA draw and that it all comes out for the very best. I wish that your CEA is nice and low and there is nothing for you to worry about.

xmomtofourx
Posts: 44
Joined: Sep 2010

that you went to a new oncologist! I think sometimes we just know when we need to take over and do things ourselves, Drs don't know everything even thou they try to make us think that sometimes and I guess now I need to take my own advice and find someone new! Hearing stories like yours really makes me more aware how important that is for me to do, I hope you are doing much better now.
If the cancer had not gone thru the wall I guess I would be a little less worried but because it did, and because of the emphisis the Dr put on that it really scares me that he didn't do any more.

Side note....I hope my posts aren't crazy and confusing and if they are I appoligize to all of you, my aunt just passed away this evening so I'm a bit messed up.

Bonnie

AnneCan
Posts: 3692
Joined: Oct 2009

Bonnie, I am sorry about your aunt.

xmomtofourx
Posts: 44
Joined: Sep 2010

Thank you!

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