Follow up tests after treatment? Any doctors use CA markers?

kelty

I asked my oncologist what follow up tests will be done to know if the chemo if effective or not and if there's recurrance. He basically told me that regular physical exam is all I need. Unless there're symptoms he won't even ask for additional CT/PET scans. Is that normal? I thought some doctors also check CA markers in blood. My doctor told me that those markers are not reliable for BC patients, they only increase my anxiety level. 

TammyLou

IMO, blood tests could be useful for followup...not necessarily/strictly because of CA markers (which are, indeed, notoriously inaccurate)...but, my doctor also checks enzyme, calcium levels, etc.

It is ever so much more likely, in my opinion, that your doctor (philosophically) believes that the best management for Stage IV cancer is symptom management.

And, the cold hard reality is that he is probably right.

"Early detection" of mets does not translate to prolonged survival. 

No symptoms translates to no treatment.

Very logical...and, somewhat difficult to accept sometimes when you are the one...the patient.

Tammy Lou

FloridaLady

Your followup maintenance is usually controlled by what your stage and receptors status was.  The more node involvement and a receptor status TN or Her2 should make the doctor watch you more closely.  Blood work is not the tell all but most doctor's continue to pull it at least the first year at my clinic.  They also run CT Scan or Pet the first year after treatment.

I would fight for a scan the first couple of years.  I had a lady in my support group that was early stage TN and did not have any follow or have any problem's and a year later it was everywhere. (bone/liver/lung) Early detection may not change your stage IV status but you can stop progression of your disease!

Plus it is a peace of mind.

Flalady

TammyLou

I think that the Florida lady makes some good points.

I have had a few friends whose recurrance was "diagnosed" because they had pathological fractures...broke a bone (as with Elizabeth Edwards)...a real sucky way to find out you have more breast cancer.

Tammy Lou

Laura-Vic

My oncologist is like yours ... her view is that I am now in charge of my body.  No follow-up tests are scheduled UNLESS I have something of concern.  No blood work - nothing.  In a way, it's like being dropped into a black hole .. all this concern and treatment (I had bilateral, chemo and rads) and then .. good-bye and good luck.  But .. as you said - her thing was - even if they did scans - it may only find it 3-4 months earlier and in fact, would not change or impact the effect of whatever treatment regime was chosen at that point.  It's a bitter pill to swallow ... but, as she said, too many people live from date of test .. to date of test.  And in between that - they have anxiety before during and after that date.  She told me - just get on with your life and enjoy.  Should anything arise - we'll deal with it then.  It's a bit of a hard adjustment but have to go with the tx worked .. I'm done with cancer.  I cannot change what will be .. so, just smell the flowers and enjoy the sunshine. 

FloridaLady

Sorry,,,but you can change things...Talk to the girls with recurrence.  Finding tumor's why still small makes them more treatable.  See the thread about stage iv survivors.  There are ladies who have been fight on and off for 20 years.  That is because they address each new problem in a timely manner. They maybe stage iv always but... 20 years as stage iv...I would take in a heart beat.

Knowledge is power no matter what stage you are.

Flalady

VickiG

Amen to that, Flalady!!!!  One thing my onc has always said is that her patients generally know what is going on w/ their bodies, that we seem to have a 6th sense about things.  That has definitely been the case with me ~ I always seem to just "feel it" and unfortunately I've always been right when I feel that way.  She does not simply wait for me to tell her about it, but she definitely acts on it when I tell her I have a feeling about things.  She offered me a brain MRI when I told her about PineHouse's experience, being nervous about brain mets w/o actually having symptoms, and sure enough she had them.  I did not opt for the MRI (this was a couple of wks ago) but will pbly go ahead & do it w/ my next set of scans.  And because it bears repeating, KNOWLEDGE IS POWER!!!!!!

FloridaLady

VickG,

I was just thinking of you this week.  How are you doing?

Flalady

VickiG

I'm doing well, thanks!  It was a real blow to me to have the Navelbine stop working so suddenly, so then I was all geared up to go ahead w/ the stem cell xplant... then that was cancelled so I was feeling a little frantic I guess.  Looked back into the Tarceva trial for TNs at MDA but that's been cancelled, too!  (No wonder we can't find a cure ~ ack!!!!!)  One round of CMF did absolutely nothing, so then switched to Gemzar... started cycle 2 on Tues.  I saw my rad onc a few wks ago to see what he thinks... he & my onc decided to give the Gemzar a shot first since I shouldn't have that along w/ rads... so now we're just trying to figure out what direction my mets are going.  It's odd because it seems like part of it is fading while part is thickening, so overall I'm thinking I'm pbly stable.  It's frustrating.  I feel well, though, so that's a great thing!  And how are YOU doing?  I am still so excited for your response to Ixempra/Xeloda ~ so what is your status now?  I was thinking you are pbly stable, but maybe even NED???????  I keep forgetting to ask, how much Turmeric/Curcumin do you take?

FloridaLady

I can't believe Navelbine fail for you so fast.  How long were you on it?  I'm so glad you are still feeling good. I know you had a rough year last year. You're like I was in '07 with no one knowing what to do next.  I do wonder why they did not give me Ixempra in '07... the drug was around. Mostly after being pushed into MDA useless trial.

I did Gemzar, Carbo & Avastin the first round with skin mets.  They did disappear for 2 lovely years. It did take about four months to get the all clear. We tried again this round and did not work at all.  No Avastin for you?  My doctor is still big on it for me.

My dose of Curcumin.. I can't remember what it is.  Look under Agelesscure.com website and see the pill measurements.  I took one three times a day. You can take more.  I do believe it helped the GCA combo work better.

I had a PET scan yesterday and will not get results until 2/5.  My skin does look good but I have to see what going on inside....remember I had nodes next to live & lung last time.  What a wonderful body we have...I was sooo surprise the skin could heal those big open wounds so fast.  If I have a good PET we are going to stop Ixempra for a few months because of my neuropathy again.  My onc. wants to do Avastin and may be Xeloda.  (my skin pealing prettty bad)  I onc. has been talking to the Avastin researcher and he believe doing Avastin with no chemo (or just a little) that there is benefits.  When you restart chemo the chemo will be more aggressive against our chemo-resistant disease.

Hang in there sister. We still have hope.

Flalady

sahalie

Hello Ladies.  I am also triple negative.  I am now at the six month check ups with blood work done a week before the appointment.  I see my oncologist today. 

For the first time since treatment began 2 1/2 years ago I don't think he ordered the CA-15 blood draw this time.  Usually I get an email from the provider with my results.

My oncologist is of the agreement that they cause stress in us and that they are not that accurate.  He is right on about the anxiety level shooting the moon over them.  Now I am wondering if he did order them and they are high and he is waiting to tell me at the appointment today. 

I'm trying very hard to keep calm.

Good luck to each and every. 

Sahalie