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Jnet's picture
Jnet
Posts: 14
Joined: Aug 2006

Hi Everyone,
I have been reading all your posts here for awhile now. Here's my story. I was dx. Jan. 2006 and had the colon resection on the same month. I had Chemo for 6 weeks every week and Radiation for 28 days because the tumor was low, that is what the doctor said, so I needed radiation. I was done with both on April. ok when they did the surgery the surgeon said there was hardening in my liver but did not test it. Then on May I had CT scan and the report was:
The 1 cm low attennuation lesion within the medial segment of the left hepatic lobe appears slightly more conspicous on today's examination than before.
So, they did sonogram and says that it is 1.5 cm x 3 cm. My Onc wants a biopsy but the radiologist that my Onc refer me to, can't do the biopsy because He said the lesion is too small. My concern is that it's been about 5 months now and still I don't know what's going to happen and I am worry. I have been waiting for 5 months now. I had my CEA test Oct.10 and it is 5.6 now. the last CEA report was on March and it was 1.3. So there's a little difference now but my Onc is not concern. He said if it is 50 or 100 then that is a concern. So, now He won't see me untill Feb 2007 but order a CT scan again in Jan 2007.
Does anyone has this problem and has to keep waiting? I am just worried. Can you good people here give me some info please. By the way I am 35 yrs.old. I appreciate any info.

Jnet

AuthorUnknown
Posts: 1560
Joined: May 2006

I don't think you should wait. Perhaps you should go for another opinion. You could also ask your doctor for PET scan. It should be more precise than sonogram.

Jnet's picture
Jnet
Posts: 14
Joined: Aug 2006

Oh I forgot to mention I am stage 3. 9 out of 12 lymph nodes was positive. but at that time the diagnosis they were not sure about the liver and still not sure now.
Eleonora thanks for the reply. I will ask my Onc doc about it.

Jnet

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

I say go for a second opinion!!!!!!! Nothing about what you have said is too terrible but there are a few "warning signs" and you are wise to ask us. I was able to have biopsies done on 3 liver mets, two smaller then yours but I go to one of the 100 plus Comprehensive Cancer Centers in the US(google that to find one near you if you are not already going to one). They have the latest and greatest stuff or at least they are supposed to.

I've been fighting the beast for 3 years now and the single biggest lesson I have learned is about taking control of my treatment plans. There is so much cancer now, you can't always expect your Doc to be there for you, he/she is very busy with other patients. You have to keep them honest and ask questions. Education is essential to survival. I used to just follow the "directions/recommendations" from my docs but grill them about them and have requested a few test and procedures myself. The 3 times I have done that, my docs agreed with my reasoning and we did them. Read my personal web page if you want to know more about my personal situation (stage IV, currently NED).

Lisa P.

kerry's picture
kerry
Posts: 1317
Joined: Jan 2003

I am right there with Scouty. Go for a second opinion. I was dx a stage 3 and now a stage 4 with a small met to my liver. Stay on top, do not wait and get another opinion, for peace of mind and early detection and attention.

I've been going through this for 4 yrs. now. Take the survivor's advice for a second opinion.

My best wishes for you.

Kerry

vinny3's picture
vinny3
Posts: 933
Joined: Jun 2006

Hi Jnet,
Sorry to meet you this way but welcome to the Semi-colons. It sounds like you need another opinion. While your CEA is not real high it has gone up despite the treatment. That is of concern. Perhaps there is another way, or another radiologist who could do the biopsy. Have you talked to your surgeon. I would not be comfortable waiting.
If there is a major center near you consider that for another opinion. Keep pressing until you get that or more.
Good luck and God bless,

Dick

chynabear's picture
chynabear
Posts: 483
Joined: Jul 2005

Hi Jnet,

sorry to hear that you are going through such an ordeal.

I agree with the others.... get a second opinion or see a doctor who is a little bit quicker on the responses. A PET scan may be a great idea in finding out if it is the beast.

taraHK
Posts: 1961
Joined: Aug 2003

Hi Jnet,

I am sorry you have to be here, but offer you a warm welcome. As you have already discovered, this board is a wonderful source of both information and support.

My history is similar to yours -- very low tumour, treated with chemoradiation for 6 weeks, follwed by surgery -- and I was Stage III, too.

I echo the opinion that you seek out a second opinion. My first reaction is that you should seek out a PET scan, if at all possible. That might give you important information on the nature of the liver lesion. Secondly, you need a second opinion on biopsy. I was a little suprised that they felt the spot was too small for a biopsy (not that I know anything!). I personally wouldn't want to wait until January 2007 -- I'm not very patient!
Best wishes to you and please keep us posted.

Betsydoglover's picture
Betsydoglover
Posts: 1254
Joined: Jul 2005

Jnnet -

Welcome to our group though sorry you have to be here.

Tell your doctor your need a PET scan. That adds another layer of truth on top of the CT - many things show up on CT that are not cancer - the PET can help distinguish between them. You should not have to wait until February for more news.

If your doc is not receptive to scheduling a PET then you should REALLY seek a second opinion - never forget it is YOUR disease and these guys are working for YOU!

I've had good medical care, but I have also learned with this disease that you really do need to look out for yourself!

Take care,
Betsy

jsabol's picture
jsabol
Posts: 1156
Joined: Dec 2003

Hi Jnet,
It is so hard not to be worried, but I would agree with the others thus far. Either be straight with your onc about wanting another radiology opinion and/or PET scan, or get a second onc opinion, as others have said, preferably at a larger cancer center.
At less than 1 year out, with 9 positive nodes, I would wonder about CEA's every 3 months to watch for trends, scans every 6, and onc appts every 3. The first 2 and a half years out are more statistically risky, and if I were you, I would push for more conclusive info about that liver thing. (By the way, I have 3 small spots on my liver, been there since initial workup, but unchanged.)
Good luck, and remember, your onc works for you. Judy

JADot's picture
JADot
Posts: 720
Joined: Jan 2006

Jnet:

Never wait. Time is so critical in detecting and treating cancer. You want time on your side. Can't they just do a PET scan to see if the spot is cancerous. I am with Kerry - seriously go and DEMAND some immediate action. You pay the doctor to take care of you, not to sit on potentially dangerous things. My CEA was 2.2 when I had two large tumors growing furiously in my body.

Please please go get a definitely fix on what the spot might be. Tell your doctor that all of your survivor friends said it's medically reckless to wait for months on end.

Best of luck to you!
Ying

levensweg
Posts: 55
Joined: Jul 2006

Jnet,
I agree and echo what everyone else has said here. My liver mets were wery small. The largest was 1.2cm x 2.8 cm in my left lobe and they were able to get a needle biopsy. It was performed on a CT scanbed to confirm that the needle aspiration contacted the tumor.Before the biopsy I had a PET scan which came back negative... a false negative.Lucky me I'm in the 8% group for PET scan false negatives. I also had an MRI and a CT scan to rule out the possibility that the lesion was not a hepatic hemangioma (a dense collection of blood vessels) which you don't want to have a needle stuck into for risk of bleeding. I am grateful that my Onc insisted on a biopsy after a negative pet scan. As a result I had a liver resection followed by chemo and have been disease free for one year now. Even with all this I still went for second and third opinions.

Here's what I would do and I would stop at nothing to do it:

Get a second opinion

get a PET scan

Test to see if lesion is a hemangioma

get a needle biopsy

Don't forget. These Doctors are working for you. Not the other way around. I hope this is helpful. Best wishes.

Lev

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

Welcome, Jnet.
I'll wager that you didn't expect such a knowledgable tumor board was right here, huh? This is the board from 'been there/done that'.
I agree with all, second opinion. The fact that you were dx stage III means you need to be more vigilant...and you are!
The saving grace seems to be that this form of the beast is slow to grow, but once started, is pesky and keeps rearing it's ugly head. I, too, don't understand why no biopsy...I had NEEDLE biopsies, for heaven's sake, for my breast cancer.
I was stage III, low, rectal cancer. BUT, due to my desire to remain unique, it was squamous cell carcinoma. I, to this day, remain VERY cautious. Although, my CEA was .7 before any treatment....this was NOT a good indicator for me...sigh....

Welcome to the semi-colons!

Hugs, Kathi

nudgie's picture
nudgie
Posts: 1483
Joined: Sep 2006

Welcome. I am also a newbie. Been using the board since Sept 06 and have found wonderful friends, stories and good advice.

I agree with everyone, you need to take control of your treatment and life. I took control of my treatment from the beginning. I am also lucky to have an Onc Doc (so far) that takes the time to dicuss, listen and then recommend. Request a PET or MRI to verify or confirm what is there and also a biospoy. Depending on what area you are in look into the top cancer centers or hospitals in your area or close by.

I am a Stage II w/NO & MO and I am requesting some sort of test, only after 4 treatments, because of pain/ache on my right side under my rib cage. Also, I have requested that my Onc Doc look into the tests available for my tumor to determine if I have FAP, gene related colon cancer, etc.

With this beast, you need to take control of the fight.

spongebob's picture
spongebob
Posts: 2599
Joined: Apr 2003

WOW! Great advice here - I guess you see the overwhelming theme: 2nd opinion, docs work for YOU.

I am lined-up behind my colleagues on this one.

Go for it

- SpongeBob

Moesimo's picture
Moesimo
Posts: 1080
Joined: Aug 2003

I agree with the others. Please get a second opinion at a major cancer center. Good luck and keep us posted.

Maureen

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