Stage I sisters... did you get any SCANS??

Harley - I had a bone scan & a CAT scan after surgery & before rads (I did not do chemo).  The bone scan was clear & the CAT showed a lung nodule & something on the liver.  The followed up on the liver & it turned out to be nothing.  The lung was followed up 6 months later & will be looked at again a year after that.  My cancer showed lympovascular involvement & the onc said just because it wasn't in the nodes doesn't mean it wasn't on its way there.  Also it can spread via the blood.  I asked about other follow-up scans & was told not unless she suspects something.  She also does tumor markers every 3 months.  For me personally there is peace of mind in having the tests & scans done.  Good luck!

Sue

Ladies, I live in California, when first diagnosed, I had the breast MRI followed by a PET scan. A year and a half out I had the bone scan... so far so good! I think from this point forward, I do the mammo and MRI... the reason I do both, I was under 40 yrs old when diagnosised and the mammo did not catch my cancer... the MRI did. I say this with caution because I do not want woman to think the mammo is not effective, it is just harder if you have never had a baseline mammo done and/or you have dense breasts...MAMMOS save lives.

Have a good weekend everyone.

Nicole

Nicole, where in California?  I'm in Southern California in the Long Beach area (about an hour outside of Los Angeles)

Kath, I like the term Radiologist's Full Employment Act.



When I was hospitalized with a case of cellulitis in my shin, I had an x-ray of my hip, to check for possible infection of my artifical hip (same leg). I understand my doctor wanting the x-ray because an infection in my hip would be a major disaster. But the xray led to a CT scan because something the radologist saw and 'my history. '

Hi Harley, 

I know the bone density test is not looking for cancer, I am on Arimidex, that is the only test I have now, other than my now yearly mammograms.  One more MRI to make sure my Pancreas is clear of the cyst they found when I had CT scan in 07.  I wonder what's next?

I, too, am in north central Florida. I had CT scans of lungs, liver and abdomen and pelvis prior to lumpectomy. Also bone scan. Extra knee x-rays due to arthritis. And a bone density test. Then follow up Cat scans of lungs because a spot showed up. Finally, 6 months after lumpectomy had PET scan to be sure lung thing was benign (it was). I've had enough of scanning. Am happy to go with lab work and tumor markers now.

But I've got to admit the negative PET scan gave me a lot of comfort. 

pam 

OZZY

Thanks so much for coming back after 10 years that is just soooo awesome and gives us so much inspiration! I am almost 2 years and still struggle with fear.

Did you do hormone meds (tamox or AI's?)

Harley, if it's any consolation to you, my tumor was Stage I and I'm not getting any scans, either. 

All of my diagnostic work-ups, treatments, and follow-up visits were/are being done at an NCI-designated "Comprehensive Cancer Center."  I'd like to offer a link to the NCI website that describes the 65 NCI-designated Cancer Centers (58 of which care for patients) and the 40 NCI-designated Comprehensive Cancer Centers, but their website seems to be down right now. Here's a general description:  https://cissecure.nci.nih.gov/factsheet/FactSheetSearch1_2.aspx 

I guess what I'm trying to say is that I think the treatment decisions and follow-up care provided at those centers is likely to be consistent with national standards-of-care in the U.S. Obviously there are exceptions -- MD Anderson is an NCI-designated Comprehensive Cancer Center, too; and someone on the previous page said scans were "standard procedure" there.

ASCO was mentioned earlier as a source of information on standards-of-care for oncology.  Another source is the National Comprehensive Cancer Network (NCCN).  The NCCN is composed of 21 high-ranking U.S. cancer centers:  http://www.nccn.org/members/network.asp

The NCCN has different "panels" that meet periodically (yearly, I think) to review new information and come up with guidelines for diagnosis and treatment of cancer.  The panels are composed of oncologists who represent each of the member insititutions.  It's my understanding that the oncologists are volunteers-- they are not paid by the NCCN for their service.  The oncologists who serve on each of the panels are experts in the area for which that panel is responsible (e.g., breast cancer, ovarian cancer, prostate cancer, lung cancer, breast screening, ...).

Okay... So, here's what the NCCN's 2010 Guidelines say about scans for routine pre-treatment workup in women with early-stage breast cancer.  These are statements from various sections of the document dealing with initial diagnostic workup of BC.  The last two paragraphs I'm quoting are marked as still being under discussion; so they aren't official yet:

"FDG PET/CT is most helpful when standard staging studies are equivocal or suspicious, especially in the setting of locally advanced or metastatic disease.  FDG PET/CT may also be helpful in identifying unsuspected regional nodal disease and/or distant metastasis in locally advanced breast cancer when used in addition to standard staging studies. PET/CT is not recommended for newly diagnosed stage I or II breast cancer."

"The recommended work-up and staging of invasive breast cancer includes: history and physical exam; a complete blood cell count; platelet count; liver function tests; bilateral diagnostic mammography; breast ultrasonography, if necessary; tumor ER and PR determinations; HER2 tumor status determination; and pathology review.  ... "

"Additional staging studies involving bone scan or abdominal imaging using CT, ultrasound, or MRI are optional. These studies are not indicated in patients with stage I disease without signs/symptoms of metastatic disease, nor are they needed in many other patients with early-stage breast cancer.  Radionuclide bone scanning and abdominal imaging with CT, ultrasound, or MRI are typically indicated only for patients with signs or symptoms related to bone or abdomen (e.g., bone scan if alkaline phosphatase is elevated, abdominal scan if liver function tests are abnormal) or in T3N1M0 disease."

"The panel recommends against the use of positron emission tomography (PET) or PET/CT scanning in the staging of these patients. The recommendation against the use of PET scanning is because of the high false negative rate in the detection of lesions that are small (< 1 cm) and/or low grade, the relatively low sensitivity for detection of axillary nodal metastases, the low prior probability of patients having detectable metastatic disease, and the high rate of false-positive scans."

This is what the NCCN Guidelines say about routine scans for post-treatment surveillance and follow-up of women with early-stage BC:

"Post-therapy follow-up is optimally performed by members of the treatment team and includes the performance of regular physical examinations and mammography. In patients undergoing breast-conserving therapy, the first foll0w-up mammogram should be performed 6 – 12 months after the completion of breast-conserving radiation therapy. The routine performance of alkaline phosphatase and liver function tests are not included in the Guidelines. In addition, the Panel notes no evidence to support the use of “tumor markers” for breast cancer, and routine bone scans, CT scans, MRI scans, PET scans, or ultrasound examinations in the asymptomatic patient provide no advantage in survival or ability to palliate recurrent disease and are, therefore, not recommended."

One routine "scan" that is recommended is a bone density scan (e.g., DEXA scan), especially for women who are being treated with an aromatase inhibitor. And, of course, routine mammograms are recommended. It's important to note that the NCCN is advising against the use of other types of routine scans (PET, CT, bone scans, etc.) in women with early-stage BC unless there are symptoms or other abnormal or suspicious findings. 

As strange and discomforting as it seems, those scans do not result in lengthening of our lives even if metastatic cancer is detected earlier.  I guess we would find out sooner that we have Stage IV BC, so we would live longer with that knowledge.  But, from what oncologists have learned from clinical trials, it really doesn't make any difference in the long-term outcome (lifespan or ability to treat the cancer once it reaches that point).  I think one sad thing this tells us is that "modern medicine" still can't do very much for us once we've reached Stage IV. <sigh>

Of course, YMMV with all this.  Obviously there are a lot of oncologists in the U.S. who aren't following the ASCO or NCCN guidelines.  We can tell from what we read on these boards that oncologists and surgeons use a lot of different approaches in BC dx and tx.  IMHO, we shouldn't think that our medical care is substandard (lower quality) if we're not getting routine scans.

otter 

Hey Sandra, I mean Harley LOL!!!

 I will let you know what happens when I see my onc.

XOXOXOXO

Brooke, I mean Linda!!

Hi Ladies, I'm stage 2a or b, can't remember.  Anyway, saw my onc a couple of weeks ago.  I asked him about the scan.  I have sooo many aches and pains and I'm worried.  He said it is not standard protocol to scan a stage 1 or 2 patient.  Also, doesn't do tumor markers on these stages either.  He said he would scan me if I wanted it because of the aches and pains.  I'm too scared (I know that is stupid and I'm not usually like that but this is very serious).  I wish it was standard so that I would know.  I'm thinking about having it done.

It is a relief when you don't have to wait days for results.  I wait in the waiting room, radiologist reads the films then a nurse or tech will say everything is OK.  Then I see my BS right after mammo.  I am going on a yearly basis now so June 16th will be my next mammo.  Keeping my fingers crossed.

Harley,

I only had a chest xray and an mri of both breasts before surgery (required by my surgeon)... because my tumor was "discrete" and literally just sitting all alone in the middle of my breast, there was  no reason to any other scans.  I also had a MUGA before chemo.... I did ask the onc after treatment if I needed a pet scan--- she asked me if I was having any symptoms- I said no--- she said no to the scan....

Frankly, I don't want any more tests.  I figure that it is out, no nodes, no other invasions and I had chemo, rads and femara--- I am done with it!!!  I admit, I sometimes wonder about it and I used to be a person who needed to know everything---now not so much.  I have alot of faith in the treatment I picked... hopefully I was right.