My Onc would not let me do any follow up scans (ONTARIO)

Hi Leslie,

I know how frustrating this is.  I have been grilling my oncs, and other docs about follow up scans too.  The ASCO standard for BC follow up care doesn't include blood work (CBC), liver and kidney function tests, chest x-ray, bone scan, CAT scan, FDG-PET scan, breast MRI or tumor markers.  Go figure.  I know many woman, myself included, who will get some of these tests done as part of their follow up care.  The standard does include mammograms, BSE, visits every 3-6 months, etc.  I don't fully understand why the testing is not more thorough as a matter of course.  You may find changing to another onc won't change the care plan.  If you don't like your onc, go ahead and change though; you're probably going to be seeing this doc for some time and it makes sense you should like and/or have confidence in the onc's skills.  I changed onc's about 7 months into treatment.

Congratulations on finishing all treatment.

(oh, btw, I'm Canadian but living in Pa)

One reason that oncs are starting not requesting as many scans is because data is starting to seep through about how much radiation you receive each time.  It is a lot more than x-rays. 

However Lesley if you are not comfortable with your onc I would be looking for a new one.  It is important to have faith in the people trying to help you and if you don't have that you won't be comfortable with many of their suggestions. 

I personally had a lovely chat (or arguement, depending on how you saw it) with my onc about what level of treatment, my expectations etc.  It was a very good thing because now we have an understanding of each other and it has worked very well these past 4 years.

Leslie YL, I personall would not push for more xrays. I was over exposed to to much radation and now developed contact dermatisits.

Inlayman terms is that every time I have an xray or cat scan or even a momogram I need to carry an epipen with me for fear that I will develop a severe reaction. I had a momogram in Oct. post radation tx and develop severe breathing problems within 5 min of exposure. Now my case my be rare, but my body can't handle any more radation. I don't really know how long after tx is done that radation stays in your body. I am only 4 months out post rad tx. so be kind to your body and only do what is truely necessary when it comes to xrays. As for your onc doctor, you should find one who you feel comfortable with. I interview 4 docs before I decide on one. You will be seening them for the next 5 years. Follow you instincts, ask lots of questions and make the choice that is good for you.

Good luck and keep me posted on what you decide to do.

Take care, Blackjack

I tried to push a breast MRI with my doctor and was told that this is not yet the norm to check for cancer.

In other words, it will not be approved.

i have argued with him over and over, that in some women, breast cancer doesn't show up as a lump and cannot be detected via a mamo and that for these women, a breast MRI would be  the best thing to do.

My plea fell on deaf ears  

For the next 5 years at least, I get one mammo and one MRI every 6 months (I'll stagger them).

I get blood tests CBCs & liver makers, tumor marker and sometimes whatever other blood marker seems reasonable (vit D, thyroid) every time I see the onc.

I see my onc every 3 months for the 1st year, every 4 months for the 2nd, every 6 months for the 3rd, and after that yearly I think.

The onc. has the right of first refusal on any symptom in my "core" - above the knees and above the elbows.  If he refuses, the symptom goes to my primary care doc.  So my care is shared between the two. 

To get more tests/scans, one has to have symptoms.  For instance, I just got an echo because I'd been having heart palpitations for 6 weeks.  My onc. punted me to my PCP, which worked to my advantage.  Why?  Because my onc. is not concerned about adriamycin damage to my heart because he's convinced he gave me chemo within safety limits.  I'm sure he did, but it still doesn't mean there wasn't harm and that there won't be harm.  However, my PCP docs are freaked that I had chemo and may have heart problems.  To my advantage, right? So they ordered an echo, which is all I wanted in the first place.   It's ultrasound, so no worries about more radiation exposure.  They did not order a chest xray, because I've had enoguh radiation for a lifetime.  I'm all for avoiding it.  Ultrasound however is an entirely different matter, and I'll say yes to all the u/s tests I can get.

So, my advice is not to make up symptoms, of course, but if there are persistent symptoms that may warrant testing, then be sure to report those symptoms.  Just a matter of paying attention, and phrasing things in ways that they're forced to respond: shortness of breath, etc. etc.

Also, I will have yearly follow-ups with my breast surgeon. 

And I see my naturopath monthly.

So I feel like I have a team of docs who work together on my care, and any one of them would go to bat for me with another doc if needed.  I love the whole team dynamic BTW, as they're all developing businesses, reputations, referral networks etc. and since they all cc each other on chart reports etc. will want to be as responsive in my care as possible, I'd think, just as a matter of good business.

Best wishes with your care!