No testing?!

FreeYourMind

At the age of 32, I was diagnosed with IDC, lymph node involvement in my right breast. I did the chemo, radiation, bilateral mastectomy, and am now on Tamoxifen. My Oncologist said there will be no testing of any kind to see where things stand. I understand that I cannot have a mammogram, but I would imagine there would be blood tests or something? When I asked this question I was told that they want to get me out of the cancer frame of mind. I was also told that there is not one particular test to see if cancer is in my body and that it could have traveled to my brain for all they know. Wondering if anyone else is in a similar situation?

Nettie1964

Wow, they told you that it could have traveled to your brain??  That's just cruel!  My MO doesn't test either, but I did have abdominal CT, Chest X-ray and MRI of Brain while in treatment due to symptoms, all of which were clean!

But now that I'm done with treatment and I have so many aches and pains, I keep complaining and he says no scans yet!  Not sure when he'll run scans, but I do get a mammo and bone density test and also blood work every 6 months!

From what I've read on these boards, it is becoming more and more common to NOT scan unless there are symptoms!

Hope you get answers from others!

Lojo

I'm not there yet, as I'm still doing rads, but my MO said just general appointments to talk to him, BS will examine my scar line/chest with physical exam and ultrasound, my GYN will keep tabs on my uterus for effects of tamoxifen, but no scans, blood tests, etc. He told me that current thinking is that blood tests and scans don't alter overall survival and just increase anxiety.

StayingFocus

Hello,

I was diagnosed with IDC, triple negative, in August 2012. In September 2012, my oncologist ordered a PET scan. Scan showed lung mets. I did 9 months of chemo, no radiation. In March 2013, my oncologist ordered another PET scan and NED was found. However, my surgeon performed a lumpectomy in July 2013 to "clean up the margins" and did a sentinel lymph node biopsy. Results were negative! 

In October 2013, I had my first mammogram since my diagnosis, followed by ultrasound...my breasts are very dense! I was called back two days later for more pictures. Something showed up on the ultrasound and I was scheduled for a core needle biopsy the following week. Results were negative again!

It seems odd that no follow-up tests were discussed with you. There are several diagnostic tests that can give a doctor some idea of what is going on within the body...PET/CT scan, x-ray, bone scan, blood tests, etc.  I get monthly blood test because I'm anemic and have some kidney problems. 

My oncologist is very pro-active in my treatment plan. Any pain or discomfort that I am experiencing, she wants to know.  Does your oncologist think that because no further testing is needed, the "out of sight...out of mind" mentality will eliminate your anxiety? 

Yesterday, I went for a bone scan. I was experiencing pain in my back and rib area for the past three weeks. I hope that it is just my arthritis acting up! I know that a recurrence can occur  in certain cases. I don't dwell on it. Time goes by so fast! I just try and live for today and enjoy family and friends. 

Nettie1964

StayingFocus,

What prompted your dr to order the PET scan right up front? 

I've always wondered why I have never had one!

StayingFocus

Hi Nettie,

My pathology report showed right breast invasive ductal carcinoma poorly differentiated. She ordered the scan to gauge the activity of the cancer cells on other organs. Glad she did it. Scan showed left lower lobe of left lung and left hilar lymph node affected.  Requesting a PET scan for her patients is part of her overall treatment plan.

Nettie1964

That's great. My path report was bad also, but still no testing was done. I even went to MD Anderson and they didn't other test either. I also showed poorly differentiated, grade 3, triple negative, tumor was over 4 cm also.

And you are also one of those dx that confuse me because you show no lymph nodes involved but have mets. That is very scary to me.

Now I wonder if I should insist on a scan.

StayingFocus

Hi,

Hey, we almost have the same diagnosis! I don't know what to tell you in regards to any future testing. That is a decision between you and your doctor. However, if you do experience anything out of the ordinary, that doesn't feel or seem normal, let your doctor know. You know your body. Listen to it and trust your instinct!

FreeYourMind

Thanks for your input everyone. My insurance never covered a PET scan. I had a bone scan and a CAT scan and MRI of my chest and pelvic area. My radiation doctor was the one who said it could have traveled to my brain. So my brain was never scanned and I'm a bit nervous about that. He said to just watch out for symptoms. Honestly, being post-cancer to me is worse than going through my treatments. How could you ever be out of the cancer frame of mind after being diagnosed?

edwards750

I think the fear factor will always be alive and well for us FreeYourMind no matter what. I have IDC, Stage II, Grade l. I had a micromet in my SN but my BS and Oncologist both said it was so small that they must have dissected and re-dissected to even find it. I have never had a scan and when I asked my ONC why not she said no reason. She also told me there is NO test at present to alert them the cancer has recurred. We have to be our own advocates when we just don't feel right. I try not to overreact to every little ache and pain because I don't want to be a hypochondriac but at the same time I have the C word so all bets are off. My sister has ILC and has scans all the time. I don't know how she does it because I panic when its time for my mammogram before, during and a bit after.

If you feel strongly that you want to have the scan then push and shove until you get your way. After all its our bodies and our lives. Insurance companies don't want to pay for what they believe are unnecessary tests. They agreed to cover my Oncotype test and then backpedaled which I was told is typical. Your doctor can tweak the codes and reasons for the scan to convince the insurance company you need the test. Peace of mind won't get it nor will family history. Case in point they won't approve a diagnostic mammogram for me despite the fact my Mother had BC. BTW Genomic Labs the company who does the Oncotype tests told me they weren't surprised BCBS(my ins co) denied the test after approving it because they do it all the time but she also said they always appeal and usually win. If they had not and I had to pay she said they would work out a payment scheduled based on income. That didn't happen thankfully. Even with insurance coverage I know we all have enough medical bills to last us a lifetime. Diane

StayingFocus

It is very hard dealing with insurance companies, but when they refuse to cover a particular diagnostic test, it makes it harder for the doctor and patient to evaluate a medical condition.  So far I've been lucky that my tests were approved without much objection. 

My oncologist sent me for a recent bone scan because of back pain and I am happy to report that the scan showed arthritis in both shoulders, back, knees and feet. For me that was great news!

edwards750

Good news Staying Focus! 

StayingFocus

Thanks edwards750.

sandilee

Dear Freeyourmind,

  I actually believe that the "standard of care" in breast cancer is not to scan after early stage treatments unless there are symptoms.  Oncologists who routinely do PET scans, and others, are not the norm, although I applaud them.  I think all early stagers should be able to have a scan two years out to make sure the treatments (tamox or AIs ) are working. To say there are not tests to find recurrence is not correct if you consider scans tests, which most patients certainly would.

    If my daughter or mother were treated for early stage cancer, I would request, and then demand if necessary, either a PET or a CT/ bone scan combo two years out, and then every two or three years thereafter.   It's not what the medical establishment wants to do because the majority of the time, there is no recurrence.  If you happen to be one of the unlucky ones, however, knowing sooner rather than later can lead to better quality of life. Do we really need to suffer a spinal fracture, as was my experience, before someone will decide a bone scan is a good idea?

   You have just begun this journey and it's very possible that you will remain cancer free, as do most early stagers. But if you really want to "free your mind," I would definitely request a scan at your two year check up, even without symptoms. JMHO

 And honestly, cancer going first to the brain is quite unusual.  The bones, lungs and liver are the most common sites, by a long shot, with bones being the most common. A CT and bone scan combo will cover all bases, except the brain, but if you're clear from the neck down, you can be pretty sure you're fine.

   

ziggypop

There are reasons why the standard of care is not to do scans unless there are symptoms. The basic reason is that a chest ct has as much radiation as 100 chest xrays. Given that radiation effects are cumulative and that a cancer patient is likely to have a number of scans etc. over the course of a lifetime, adding routine scans is in most cases more likely to do harm than good. (That is the argument that is made anyway & it's generally how a risk analysis is done so it makes some sense to me).

FreeYourMind

Thank you ladies for your replies! Best wishes to all : )

edwards750

Freeyourmind...I don't understand not having mammograms; that doesn't sound right.

edwards750

Good point ziggypop. While I have never had a scan, no reason to yet I guess, my Oncologist told me if I have pain that doesn't go away to come and see her and not a GP. I will definitely do that. So far, so good 3 1/2 years out. Next mammogram is next month. Diane

ziggypop

Yep Edwards, that's the general advice as I've heard it - if you have some unexplained pain (LOL - I dropped a tv set on my finger a couple weeks ago and broke it & that did not necessitate a bone scan), that hangs on for a couple of weeks OR something weird (like you start to turn yellow or whatever) then they want to check you out.  

SpecialK

This is what ASCO recommends in terms of post-treatment follow up care.  My MO does not follow these guidelines, I had a pre-chemo PET after it was discovered that I was Her2+ and node positive.  I had a post-chemo PET, and also one done at a year post-chemo.  I had quarterly CA 27/29, CEA, CBC, CMP, Vit D done when I saw my MO every three months, and now do these labs twice yearly as I have moved to a MO visit every six months.  I think this is a question that is worth asking when choosing a MO - how do you plan to follow me when treatment ends - many patients are frustrated by the lack of post-treatment surveillance.  I like that my MO continues to look closely at me, and is not willing to wait until I am symptomatic.  I have no anxiety over the scan/labs, but that may be because they have always provided peace of mind with their results.  I have never had a false positive result, rather the opposite, as much pre-treatment imaging failed to show cancer in the breast and in the nodes.

http://www.asco.org/quality-guidelines/breast-cancer-follow-and-management-after-primary-treatment-american-society

Don’t perform surveillance testing (biomarkers) or imaging (PET, CT, and radionuclide bone scans) for asymptomatic individuals who have been treated for breast cancer with curative intent.

• Surveillance testing with serum tumor markers or imaging has been shown to have clinical value for certain cancers (e.g., colorectal). However for breast cancer that has been treated with curative intent, several studies have shown there is no benefit from routine imaging or serial measurement of serum tumor markers in asymptomatic patients.
• False-positive tests can lead to harm through unnecessary invasive procedures, over-treatment, unnecessary radiation exposure, and misdiagnosis.

sandilee

As a patient, you need to find an oncologist that you feel comfortable with, not just for initial treatments, but for follow-up, too. Just like some are more aggressive in treatment, some are more aggressive in follow-up. 

 Personally, if I had a positive lymph node at presentation, I would want some kind of testing for recurrence; either tumor markers or scans, a couple of years out at least, and then again perhaps at the time that the doc recommends stopping the hormonal treatment.   Approx. 30% of early stage cancer recurs, and the ASCO guidelines offer nothing for this large group of cancer patients.

sandilee

Remember, too, that MRIs emit no radiation, and are very effective at finding spinal mets, which is where the vast majority of bone mets begin. My spinal MRIs also show the liver, (they always comment on the small cyst that shows up) even though it's prescribed for the bones.  There are also different types of tumor markers, and while some may not be accurate, sometimes they are. My CEA has followed my progression and remission pretty reliably.  I wish my onc had been taking them all along. He would have noticed that my numbers were climbing from a normal of under 5 to over 280 when they found my bone mets. It would have given him a reason to look further.  We now use them to help with treatment monitoring.

Nettie1964

My whole problem is the "does not go away"!  My aches and pains come and go!!  So therefore, I can never say, yes I've had this pain for 2 weeks!  I can say, I've had these aches and pains off and on for over 6 months!!

HomeMom

I had a PET scan yesterday because I had positive nodes after my lumpectomy. If they had been negative, they would have sent out for the oncotype test and if that was negative, I would have just had radiation. As it was, my margins weren't good and I had positive nodes, so we did the PET scan and plan a mastectomy and chemo. Praying for a clean scan so I can get the surgery next week and move on with it.

I know it's a good thing we did it, but it is stressing me out big time that it may have spread.  

tangandchris

I'm frustrated with this too and I talked to my MO about it at my last visit. No scans are done unless a symptom is presented, that is what she said. It all seems very loosey goosey to me, like we are just doing chemo in hopes that nothing will present but there is no way to know if it is working?? This was part of my frustration last week at how sick I was and I really wanted to just throw in the towel.

I like my MO, but at time she can be almost flippant about this sort of thing. She actually stated, "what good is a scan going to do you after 24hrs if it is clear. You are still going to be worrying about reoccurance."

 

HomeMom

Your MO said - What good is a scan going to do to you after 24 hours if it's clear???  

I don't understand what she meant by that. Chemo would kill anything "floating around in there" per my MO with a clean scan. But if there is mets you have to approach your treatment a lot differently. I'm really new to all this so I could be wrong.

mcgis

i was diagnosed last year with IDC and node involvement too. i did bmx, chemo, exchange, radiation, still on herceptin, and am on tamoxifen as well.  my dr. orders PET scans every 3 months and a muga scan too (to check my heart from the herceptin). then i think he cuts it's back to every 6 months... occasionally they will order CA-15 (i think) with my blood work. it's a tumor count.

SpecialK

tanga and homemom - the philosophy is that even if the scan is clear it doesn't remove the worry about recurrence.  Another reason some MOs don't scan is that things have to be large enough to see, so the scan could be clear when you in fact have mets that are too small to be visualized yet.  That is why they wait for symptoms.  Or the scan can reveal something suspicious, you go through additional testing and procedures that scare the crap out of you, and whatever it is turns out to be benign.

homemom - chemo MAY kill anything floating around, chemo is not a guarantee or a certainty, and does not work for everyone.  When you have adjuvant treatment there is no way to determine whether chemo has worked or not, you are just crossing your fingers and hoping it does.  If it always worked, nobody who has had chemo would recur, and we know that is not the case.

tangandchris

SpecialK is right, that is how my MO views it and I can see her point....but it is still frustrating. The whole cancer deal is frustrating!

HomeMom

My MO and BS just feel that they wouldn't want to have overlooked anything.  I should have results today - or  A clean scan is going to mean the world of difference to me and my attitude going forward.

I've been the stick your head in the sand type of person to a certain degree, so personally, I would rather have NOT had the scan. But that is why I'm even here in the first place so what do I know!

FreeYourMind

Love. You ladies rock! Thanks so much for all the info!