Stage II ladies, how often do you get PET/CT scans?

Fearless_One

I had one about a year ago, clean - but I will now have a co-insurance and those scans are thousands of dollars.   Am meeting with Onc, but just wondered how often you have them as part of routine follow-up?

lovemyfamilysomuch

Never! xo

suemed8749

Hi Fearless - I had one after dx in 2008 and one a few months after I finished Herceptin in 2009. None since then, and none planned for the future. I think standard of care only calls for scans if the patient complains of symptoms.



If you want closer monitoring, perhaps you could join a clinical trial. I'm in the Neratinib trial (for Her2+), and the drug company pays for monitoring - MUGA scans, EKG, bloodwork for liver enzymes, chest x-ray...and a dr. visit every 3 months.



Best wishes,

Sue

Fearless_One

No, it's not that I feel I need closer monitoring - so far so good - I just didn't know what the "norm" was.  

toomuch

I've never had a PET or CT scan. My oncologist doesn't do them prior to treatment for Stage I or II disease and says that unless I have symptoms I won't ever have any. To be honest this approach kind of makes me nervous but then again, I don't want any unneccessary radiation exposure since I'll already be getting 33 treatments this year!

comingtoterms

I Like toomuch, I have never had either a PET or CT scan. I am being seen at a cancer institute.

msmpatty

None for me either!

Patty

Sherryc

I had a PET Scan today.  My onco said he likes to get a base scan if the insurance will cover it and will not get another one unless something does not look right for me.

revkat

I had an abdominal CT scan at diagnosis but nothing as part of follow up. No scans unless I start reporting symptoms or my blood works goes seriously wacky. I have had roller coaster liver enzymes and my onco was going to order a CT scan to check it out, but when I asked if that would give more info than an ultrasound she happily changed to order to an ultrasound (all clear). If/when your onco wants to do a scan, you can always ask if a cheaper procedure would provide the same info.

jancie

When I was diagnosed I immediately was set up for a bone scan to make sure I didn't have bone mets and also for a chest x-ray.  I also had a breast MRI.

6 months after completing radiation I insisted on a petscan.  They don't like to do them right after radiation because you can get false positives.  Fortunately my scans cost me $100 each so I can afford to insist on really close monitoring.

I had 2 MRI's on my hip this year along with 4 sets of x-rays and they still can't figure out where this pain is coming from.  I am beginning to believe the tamoxifen might have something to do with it.

I had 3 sets of chest x-rays done this year when I broke my ribs.  The great news is that if something was not right - it would show up.

This past month I have had 3 sets of x-rays to my left arm and shoulder due to another accident - thankfully only fractured bones showed up.

From what I understand from the doctors, the insurance companies are putting pressure on them to not order so many scans.  Personally I would get a full scan once a year if I can because it takes the worry away from me that the cancer might come back and I wouldn't know about it for months and months.

Fearless_One

Toomuch, I agree about the radiation - PET scans use quite a bit and I would rather not have them unless doc feels it's really necessary (in addition to the cost factor).

I never did have a bone scan, which is odd, right?    I need to ask her about this. 

Claire_in_Seattle

Not odd about a bone scan for the same reasons.  But bone DENSITY is another issue.  Which reminds me that I need to ask about this too during my next oncologist appointment.  I had a baseline five years ago and time for another check.

ruthbru

Never.

Shrek4

Diagnosed August 2009 - BMX October 2009. PET/CT scan February 2010 (prior to chemo) and August 2010 (after chemo). I am supposed to get another one in February 2011.

Might be also depending on the lymph node involvement? I had a positive SNB - ALND showed no further spread to lymph nodes but still maybe that's the reason for more frequent PET scans?

 The radiation for the PET/CT scan is minimal - it only comes from the very weak radioactive sugar that you get in the injection. the fact that you don't have to take any extra measures after the scan shows you how weak it is and the max half-life of the fluorine (the longest lived) is of 110. The emission is of about 0.002 rads/hr. Pretty much as the normal radioactivity in the surround. And there is a reason why you need to go to the bathroom before starting the scan - to eliminate the most aggressive radiotracers.

1Athena1

Never - but I was wondering what the norm was - thanks for starting this thread.

mobay1020

I had a bone scan when I was first diagnosed to see if the cancer had spread.   Fortunately, it hadn't.  My doc will only schedule it now if there is reason for concern.   He believes that too many tests bring on too much anxiety and I agree.  I actually just had a 2nd bone scan a few weeks ago because I was having this odd pain in my leg. The doc wasn't overly concerned but he ordered it anyway.  Talk about anxiety!!  The test was ordered on Friday for the following Monday and I was a nervous wreck all weekend!  Thank god I got the good results back on Tuesday because I couldn't have waited any longer!

linfer7358

I just had a Oncologist appointment today..I was complaining her about my left breast pain..The right breast is the one with cancer..Had lumpectomy last Oct. 14..She examined it a says there's nothing that she felt and told that maybe it causes pain because of the right breast surgery..It's been almost a month now after the surgery but the pain (left and right breast)still very uncomfortable..And i am scheduled to have SNB on the 18th and still not that healed yet..Does anyone had experiences like this..I am very worried about it..Starting to have pain in my body every where..It's freaking me out..Please let me understand this situation..I would appreciate any info..HUGS TO ALL!

Fearless_One

Yes, I did have bone density test, but never a bone scan.  Day, you may be right about lymph node involvement being a factor - I did have 2/16.  I am going to discuss my scan frequency with my Onc next week - I will certainly let you ladies know what she says if you are curious...

toomuch

In response to what Day wrote, it's true that the exposure to radiation from the nuclear tagged sugar is minimal. However, the test itself exposes you to increased radition. If you look at different sites radiation from procedures differs somewhat between sites but an example of comparative radiation exposure is below:

Dexa Bone Density Scan: 0.1 mrem 

Chest Xray: 10 mrem

Mammogram: 70 mrem

Bone Scan: 430 mrem

CT chest: 700 mrem

PET scan: 700 mrem

CT abdoman: 1000 mrem

PET/CT: 3000 mrem

 It's lifetime exposure to radiation that's important! Ofcourse none of the exposures above compare to the dose of radiation that is administered for radiation therapy which I will be starting in December but it may be something that we should think about.

toomuch

Fearless_One, I just sent you a PM.

lago

I had one before surgery. The think there might be a spot on my liver but they also think it might be something I had since childhood. They will do another on my liver after chemo because of this. If all is well then I won't get anymore unless I have symptoms.

Fearless_One

Toomuch, I was schocked to learn that my one PEM (not PET) scan exposed me to the radiation equivalent of "an annual mammo every year from the age of 40 on".   I need to get those numbers, but they were staggering.   But I have dense tissue and they can't see anything, so she wanted one before surgery.   

I did not know at the time how much radiation a PEM scan uses (or Breast Specific Gamma Imaging which is similar, I think).

badger

I've had no PET/CT scans.

PrettyinPink33

I get ct scans every 6 months and bone scans every year until i reach the 5 year mark, then once a year for everything for the rest of my life. Every doctor is differant, I hate that, and for all you achy ones out there, Im very achy too, my whole body, I thought it went to my bones but it only shows artritious...

maltomlin

I had a CT scan and X ray at dx which showed a lesion on the liver. Consequently I had a follow-up CT nearing the end of chemo (which showed a cyst). Nothing now unless I present with symptoms and I am happy with that. I don't want to be worried about annual scans etc.

Mal

calamtykel

A CT scan is extremely high radiation exposure.  I haven't talked to my doctor yet about this.  I did have a CT for chest, abdomen and pelvic area and a bone scan prior to my treatment as well as bloodwork for tumor markers.  They were all clean.  I have one more chemo to go and then tamox - no rads since I had a mastecomy.

I am terrified of mets.  but I don't think I want the radiation exposure of more CT's - it's scary.  Maybe a few years down the road I might change my mind......not sure what her protocol is but I guess I will find out next time after my last chemo

calamtykel

I found this posting on the Moving Beyond board.  Maybe it will be helpful.  I was surprised to see that Johns Hopkins does not recommend routine scans once you are done. 

Copied this from
http://www.hopkinsbreastcenter.org/library/diagnosis_treatment/post_treatment.shtml

Lots of good information for "moving beyond" and coping.
Hope this helps.

Being diagnosed with breast cancer is a life altering experience. Though your surgical and medical treatment may be over, the effects of having been diagnosed and treated may continue for some time. After treatment your body is different. You have lost part or all of your breast(s). You've undergone lymph node surgery. You may have had chemotherapy, radiation, or both. Each phase of treatment unto itself is unique and how your body and mind coped with it during and after care is equally unique. It is common to have remaining concerns about your health and how to best move forward after treatment ends. There are some similarities about how women feel after treatment too and learning about these common reactions can help to prepare you for life after treatment. Your doctors, nurses, and other Breast Center team members want to see you well again. Defining wellness for each patient can be different. It is rare that anyone having had breast cancer feels physically or psychologically as they did before their diagnosis but all patients should look forward to being healthy again

All breast cancer survivors live with concern about recurrence of breast cancer. This fear is usually the biggest worry of all. Women feel that their body has betrayed them and therefore it takes time to trust it again. Learning how to cope with fears of recurrence is important so that you can make the most of your life and what it has to offer you and you offer to it. And though your body has gone through many changes as a result of the cancer diagnosis and treatment, you will more than likely find yourself healthy, strong, and optimistic once again.

Your body has been through physical changes. You may have a different silhouette than you had before. Depending on the type of breast surgery performed, you may have some potential physical restrictions related to reconstructive surgery or to having lymph nodes removed or both. You may be experiencing skin or breast changes as a result of radiation therapy. As a result of chemotherapy your hair may still be gone or just now starting to grow back. You may also be experiencing symptoms of menopause.

So why are family and friends saying to you now that you should be getting your life back to normal? Partly because they desperately want to see things in your life (and theirs) back to the way it was before your diagnosis of breast cancer. And perhaps so would you.

We can't rewind the clock however. This life altering experience can't be erased. So let's see how to begin a new life with a new definition of "normal" for you. It is not uncommon for women who have experienced breast cancer to find that this experience in the long run has made their life better and helped them to learn some valuable things about themselves and make their new life after treatment more fulfilling. Priorities are set differently going forward, relationships are strengthened, and what is important in life takes on a different meaning.

This booklet contains information to help you and your family adjust to your "new normal" and define how to cope with symptoms that linger after treatment, deal with fear of recurrence, and learn ways to adjust to other changes that your body may experience in the future, like menopause. We want to help you achieve that "new normal" so that you can enjoy living and feel confident again in trusting your body, making the most of each day, and gaining insight into how this breast cancer experience can result in a new beginning for you.

Recurrence And Follow-Up
Once the treatment for breast cancer is completed, patients enter a period of follow-up which remains ongoing for the rest of their lives. During follow-up, the major concern of patients and their doctors is further problems with breast cancer. You will also be watched for any long-term side effects from the treatment you received. These problems can take two forms. The original breast cancer can recur or a patient can develop a new breast cancer. It is important to distinguish these two because the prognosis is very different for each. The most serious form of recurrence is metastasis that develops when breast cancer spreads to other sites in the body. A second type of recurrence, which has a more favorable prognosis, is when breast cancer is detected at or near the original site in the breast in a patient who has had breast-conserving therapy.

Patients who have had one breast cancer are at higher-than-average risk for developing another breast cancer. The new breast cancer can develop in remaining breast tissue, including the conserved breast in a patient who has had breast-conserving therapy, or in the opposite breast.

Studies show that about 80% of breast cancer recurrences are detected by the patient herself either because she developed symptoms or she detected some physical abnormality. The second most common way in which recurrences are detected is by physical exam performed by a physician or other care provider or by mammogram at the time of the patient's annual breast x-ray. Only uncommonly do laboratory or radiology tests detect metastases in the absence of symptoms or physical abnormalities.

All breast cancer survivors are highly attuned to their bodies. They notice everything. Moreover, it is the norm for patients to worry that any symptom or physical abnormality is related to breast cancer. This is not the case. However, the anxiety about recurrence is so pervasive that it is hard for patients not to assume that symptoms or physical abnormalities are related to breast cancer. This anxiety tends to be greatest soon after diagnosis and initial treatment. It gradually subsides, but never fully goes away.

It's important to remember that breast cancer survivors are not immune to everyday aches and pains. However, breast cancer patients don't think of aches and pains as everyday. Symptoms that breast cancer patients would have ignored before their diagnosis are now taken ever so seriously. While it is important to pay attention to symptoms, it is also important not to assume the worst. Unless symptoms are very clearly in need of medical attention immediately, it is best to give them a week or two to see if they will go away on their own. Most symptoms and physical abnormalities go away on their own. Most will never be explained. Symptoms that are related to cancer do not go away. They may come and go initially, but eventually cancer-related symptoms persist and worse symptoms that wax and wane or come and go without worsening are very unlikely to related to cancer. If symptoms or physical findings do not go away or if they become more persistent or severe, it is suggested that they be brought to the attention of the physician.

Follow-up after diagnosis and initial treatment should include regularly scheduled visits with breast cancer doctors, special gynecologists, as well as mammography. It is important to point out that the recommendation against screening tests for distant recurrences does not apply to screening for new breast cancers or for a recurrence in the same breast following breast conservation treatment. Screening for new breast cancers is done by mammography. Screening mammography has been shown to improve survival. In other words screening mammograms can pick up cancers early enough that effective treatment can be instituted. Therefore, during post treatment follow-up, breast cancer survivors are encouraged to have routine screening mammography. Typically the uninvolved breast should be screened annually while a conserved breast should be screened every six months for the first one to two years and then annually.

Screening tests for metastases have not been shown to improve the outcome of patients. Therefore, they are not recommended. In other words, blood tests, including tumor or cancer markers, x-rays, and scans are not recommended on a routine basis in the absence of symptoms or abnormal physical findings. On the other hand, some or all of these tests are warranted in an attempt to explain symptoms or abnormal physical findings.

Patients are typically perplexed that blood tests, x-rays and scans to search for asymptomatic metastases are not recommended. It is quite natural to believe that the outcome of treatment of metastases will be better if they are detected as early as possible. Unfortunately, this is currently not the case. Typically, screening tests for metastases will only pick up abnormalities a few weeks or months before they would cause symptoms and be otherwise detected. However, your chances of responding or benefiting from breast cancer treatment once it has metastasized are essentially the same regardless of when treatment is started. Two large clinical trials have shown that patients who have screening laboratory work for metastases do not have any better outcome or quality of life than patients who do not have these tests.

Research into more accurate ways to detect metastases is ongoing. At the same time, there is enormous effort underway to develop better treatments for metastatic breast cancer. It is hoped and expected that in the future there will be more effective screening tests and treatments for metastases. At that time, screening for metastases may become routine. Until then however, it is not recommended. More detailed information on follow-up recommendations after your initial diagnosis and treatment is available in the public area of the American Society of Clinical Oncology web site (www.asco.org).

With regards to physician follow-up, it is important that patients follow-up with all of the physicians involved in their treatment. However, this follow-up should be done sequentially rather than in parallel. It is suggested that patients see one of their breast cancer doctors every three to six months during the first 3 years after diagnosis, then 6-12 months for the next 2 years, then annually. Your breast cancer team will help you in making these follow up appointments at the appropriate intervals. Thereafter, follow-up visits can be every 6 to 12 months. While patients will always need breast screening, they may not always need to have follow-up with the physicians who treated their breast cancer. After five or more years of follow-up, patients may be able to be followed by an internist, gynecologist, or primary care physician knowledgeable about the health issues of breast cancer survivors.

Fearless_One

Calamtykl, that is fascinating - thank you for posting that!   I really had no idea about some of that stuff.....am meeting with my onc tomorrow - will discuss....

CoolBreeze

Standard of care for early stage cancer is no PET scans.  If you want to know what is normal, it's listed here:

http://nccn.com/images/patient-guidelines/pdf/breast.pdf 

My onc only does them when a patient is symptomatic.  I've had a bone scan and a CT scan because I'm havving back problems.  I don't think I have cancer there though, and in fact, the bone scan came out clean.  The CT is to see if I have a disc problem.  I wouldn't want to get extra radiation at this point if I could avoid it.  The only reason I didn't have an MRI instead was because I still have a *(#*#&$*# expander in, after a13 months, and no, I didn't have rads. 

When I'm done with treatment, he will monitor my blood.  He says it's not very accurate but better than nothing.  

Fearless_One

I never was clear on the definition of "early stage" BC.   I was stage II, but had lymph node involvement - that never sounded "early stage" to me.   But they say it is.

Fearless_One

UPDATE:  okay ladies, onc said today that she does not order PET/CT scans in the absence of symptoms.   Just breast MRI's for me because I have really dense breasts.

But your oncs may do things differently.