Why scans with no symptoms?

[Lauren]

I am her2neu positive, and my doctor believes in no scans, and I am really really happy about that. Scans freak me out, and frankly, I don't want to start treatment for something sooner than I need to. If it doesn't matter WHEN you start treatment for mets, then why does it matter whether you wait for symptoms before ordering a scan?

What are the benefits of early detection of mets? I thought that once it's "out of the box", it's all equal in terms of treatment and prognosis...

[Lolly]

Lauren,
I was just talking to one of my nurses about this today, as I was in for my second treatment for 2nd recurrence of mets to supraclavicular lymph nodes. She agreed with me that catching mets early is beneficial in terms of quality of life issues.
My mets were caught each time because of symptoms, but I asked for a brain MRI this time to rule out brain mets. However, I'm going to ask for an annual brain MRI from now on as I believe that the earlier the better in regard to brain mets. There is the potential for more treatment options if the tumors are small in size and number.
I guess it all comes back to personal choice, and whether your quality of life is diminished by the worry of scans.
Love, Lolly

[Steph N]

In my case, my quality of life is INCREASED after I get the "all clear" from my scans the past 2 years. Once having had mets to deal with (and MAJOR mets that gave virtually NO symptoms), for me, it is better to know that something is NOT happening. Even if it was, I am with Lolly that the sooner caught the better for treatment options, possibly shorter duration of treatment, and better survival chance.

[Eleanor]

I, too, believe in early detection. I would rather have the scans and get the all clear and live a few months with peace of mind than always worrying about every twinge. On the flip side, if the disease comes back (I am currently ned after a year of treatment for bone mets) I would want to get a jump on it. I believe that if you don't stay on top of it, the disease will rage out of control. For me scans are necessary, but it's not for everyone.
el
el

[Lori]

Was curious as to how many of you get regular scans, and if so, how often? My onc says to only get scans according to symptoms (i was node positive with no other mets), but I would feel more comfortable if I knew I would be getting regular scans. does insurance usually cover scans with no symptoms?

[Staci]

My old onc. was a "wait for symptoms" man. When he retired I had not been scanned for 1 1/2 years and my counts were perfect. I felt great and boy did I have nice hair again! When my onc. retired I had to find someone new. When my new onc. saw that I had not been scanned in a while he ordered a PET and found 2 lesions on my liver. Finding them early led me to treatments (RFA) that would not have been possible if they had been larger in size or number. Scans freak us all out. Ignorance is bliss, but it doesn't change what may or may not be in our bodies. I guess we all have to make our own choices that best fit our needs. I firmly believe early detection saved my life, or at leasted extended it. God bless you all.

[Staci]

My insurance only gives me grief over PET scans, but not CTs.

[Patty D]

I have scans for my chest, abdomen (which covers liver, pancreas and spleen) and pelvic area every 3 months. So far they are clear (I was originally dx with mets to lungs in Jan 2003 after 8 years of NED for breast cancer. I was dx with mets to brain in Aug of 2003 after having very slight headaches . EAven though my onc at that time knew that pt that have mets to lungs are particularly susepctible to mets to brain he never suggested a brain MRI - As a result they found 6 tumors. If he had done a scan before (I had symptoms maybe they would have found fewer tumors and my treatment might have been less invasive (I had to have WBR) So now my new onc is very good about making sure I have follow up on everything on a regular basis.I recently had cybernife for 3 remaining brain lesions from last summer. Hoping for good results.
So please get regular folloow up scans - it is worth it and ins usually covers them.

[eleanor]

my insurance covers all scans regardless - no problems

[Shirl]

As I read your comments re: scans, I was rethinking my onco MD's remarks that the following tests are NOT recommended by the American Society of Clinical Oncology(ASCO): chest x-ray, bone scan, ultrasound of liver, CT can, breast cancer tumor markers CA 15-3, CA 27.29 & CEA, for routine follow-up care, if no symptoms are present and the person seems in good physical condition. I do not necessarily agree with ASCO. What tests have you routinely had & when were they scheduled after you completed chemo and/or radiation? Appreciate your input. Shirl

[jessica]

Scans can detect mets before we notice any symptoms or changes in our labs.Remember, symptoms are evidence that the mets are already causing some compromise in the health of the organ they are growing in.Why wait until there's already damage if chemo can knock the tumor load down before it has a chance to threaten our health?
Scans are scary, but in our case ignorance is not bliss, it's just denial.

[Vicki Z]

What is RFA, Staci? Were you node negative before the mets?

To your continuing good health and healing,

Vicki