Who Handles Your Yearly Breast Checks after Cancer Treatment?

lopsided_blogger

I'm about a year and a half past treatment for IDC, and as far as I know doing great. This year I wanted to move my yearly breast check stuff over to my ob/gyn, since my guess is they usually handle this stuff.

For some reason, my rad oncologist had been doing it for me since my diagnosis. I don't see him anymore and am looking forward to the day I don't see an onc anymore, so I thought let's move it to the ob/gyn so I'm like any other typical woman.

This is not the ob/gyn I had during diagnosis so she doesn't know my story: The very first mammogram I had at age 37 because I felt two 2.5 cm. lumps showed everything was clear. The mammogram couldn't find the lumps because I have dense breasts.

So, I'm never trusting just a mammogram again. I need an MRI on my remaining breast and to check hard areas in my DIEP reconstruction and lymph nodes on that side.

My insurance makes me get a mammogram before moving on to a MRI. So, that means every year for now I will need a mammogram followed by a MRI. My ob/gyn ordered the mammo but deferred back to my onc to order the MRI. I don't want to have to work with two doctors for this every year. I want one person (I'm still thinking ob/gyn should be it) to agree with my screening needs and to implement all portions of it, then report back to me and fight if insurance has troubles.

So, finally my questions: When you are post-bc treatment and NED, who takes care of your annual breast checks? Has anyone else run into a lot of trouble on this issue? If so, what did you do about it?

Thanks for your help,

Lopsided blogger

Morgan513

Listen, I'm still on the merry-go-round of doctors.  I see the chemo onc every 3 months, the surgeon every 6 months, and the rad onc once a year (only reasonble person!).  I told my chemo onc that I want out of the trap of doctors.  So...after this visit with the surgeon, I'm done with her.  When I see my rad onc, I'll be done with her.  I only see the chemo onc so much because I part of a clinical trial and they need the follow-ups.  

I feel like I need to take control of my follow-up treatment.  I have no need to see every doctor available to have them all give me a breast exam and send me on my way.  It's really obnoxious when only one doctor would do.  To me, I want to follow-up with my chemo onc as I feel like he has the best handle on my care.

Lorrie 

lexislove

I visit my onc every 3 months and he does an exam. I also go to have a yearly mammogram on my healthy breast. I need to be more vigilant on doing exams on myself...

sheila888

This is my story......Once a year BS checks the breasts. I don't see my rad-onco at all.

Oncologist every 4 months checks the breasts

GYN once a year checks the breast.

Finally my PD during annual check up checks the breast. So everybody checking it.

Dont you have to see your oncologist on regular basis?

Good Luck

Sheila

lopsided_blogger

Hi Sheila,

Yes, I see my onc every four months or so, but since I don't have breast cancer anymore, it doesn't seem like he should be ordering my mammos and breast MRIs for routine yearly checks. Plus, I'm being optimistic and looking to the day I don't see onc at all, then who will order routine mammos and breast MRIs? I would just like to have/find an ob/gyn who's on board with my screening needs and can do that for me going forward. But maybe it's more standard to keep this with your onc--but for how long?

Thanks again,

Lopsided blogger

sheila888

I think your best bet will be your oncologist since he or she can order any kind of tests. The first 2 years onco was every 3 months and he did tumor marker test. After 2 years it was every 4 months until I reach 5 years hopefully its getting closer. After that its only once a year follow up.

Your gyn cant order MRI. May I ask you a question I see you are HER+ why you want to stop seeing your oncologist. And 1 more thing I never got MRI before or after does your Doctor wants a MRI done once a year? I don't know your situation but I had lumpectomy, chemo with Herceptin (52 weeks) and radiation. Is that your case also.?

I think you really should have a talk with your oncologist an get his opinion

kira66715

There are survivorship guidelines put out by ASCO (American Society of Clinical Oncologists)

http://www.cancer.net/portal/site/patient/menuitem.169f5d85214941ccfd748f68ee37a01d/?vgnextoid=54fa28e76473e010VgnVCM100000ed730ad1RCRD 

They actually don't recommend tumor markers or MRI--but as a routine, every case is different. They do discuss figuring out who should be the physician who orders tests.

I get an MRI 6 months after the mammogram currently as my breasts are too dense to see anything, per the radiologist, so my med onc orders the MRI.

I see the med onc every 6 months, the breast surgeon yearly, scheduled to see the rad onc yearly but might skip that, see my gyn yearly (on tamoxifen and needed a D&C last year) and my PCP yearly. Too many visits for me, but I let the med onc order the mammograms and MRI's.

Kira 

GramE

I also have been wondering who and when to see.   DX May 2008, chemo, lumpectomy, herceptin for a year.   I had a "6 month" mammo May 2009, with "spots" on the other breast.  Stereo Biopsy, which were calcifications.   

Mammo is at same place, in fact, same department, as Breast Surgeon.  So, on Thursday I will have a follow up Echocardiogram (to monitor heart effects  after chemo and herceptin - know as "routine"), 6 month mammo, ultrasound if needed, then see Breast Surgeon, who I found to be the BEST to interpret the mammo.   Also, I have a copay for hospital appointments, so I get out of it with only one copay for the 3 things on the same day.    

I did not do radiation, and the medical onco said to see her every 3 months.   Discussion with my chemo buddies -- onco does nothing except feel breasts - no blood work, not even blood pressure, so why go?   The surgeon sent mammo order and her clerk/nurse assistant makes mammo appointment with office visit same day.    

And, when I had stereo biopsy, that follow up to get results was with the Breast Surgeon.   MY experience and thoughts.   Final thought:   I get a "diagnostic" mammo and it is a digital one. -- no a "screening" mammo.    

mawhinney

I'm happy to let  any doctor check my breasts.  I look at it as many eyes ( or should I say hands) looking out for my welfare. I also check myself on a regular basis.  I am a 17 month survivor.  My BS sees me twice a year to check my breasts. She has me alternate every 6 months between a mammogram & a mri. That way I am getting some type of scan routinely. When I see my onc he also checks my breasts as does my gyn.

Lindissima

I agree with mawhinney.  I like the idea of many eyes and hands for greater peace of mind.  At the breast care center I use, the follow up plan is predetermined.  I see my BS every 6 months for the first 2 years.  She does a comprehensive clinical exam, orders a mammogram and/or MRI every 6 months. I also see my onco every 6 months, and  have Rad onc visit coming up 6 months from completion of radiation. I have switched over to a gynecologist who specializes in women with cancer and a woman PCP who works on women's health issues, all at the same NCI designated teaching hospital.  The doctors have advised 'staggering' visits so I see someone every 3 to 4 months.

So far, they have not scheduled any scans.  I have done one tumor marker blood test so far. 

lopsided_blogger

So for the millionth time, I wish we lived nearer a NCI-designated cancer center or at least a place that would get on board with the alternating 6-mo mammo and MRI schedule. That's what I need because I have dense breasts. (My first mammo when I presented with two 2.5 cm. tumors could see nothing--it showed all clear. So mammos alone are obviously not enough for me).

I think my biggest problem is neither my onco or ob/gyn want to sign on to what I need (both mammo and MRI). That sucks, because I've gone through most of the other local oncs and gyn/oncs and fired them or not chosen to go with them because of specific issues with cancer treatment or how they handled or didn't my diagnosis. So, in this town, these are the people I'm left with and both are running from signing me up for what I know I need. Very frustrating indeed.

Lopsided blogger 

MarieKelly

I refused any further treatment after my lumpectomy in 3/04, so I don't have any specific oncology follow up. I just see my PCP for yearly physicals which includes a breast exam -  and since I don't need a physicians order for a yearly mammogram, I just make an appointment to have one done at a nearby breast care center every year about the same time.  Mammograms work very well on me since I have very non-dense breast tissue. Is it possible you could just get your regular PCP to order what you need??

otter

lopsided blogger,

I didn't have the options I needed locally, either; so I gladly agreed when my PCP offered to refer me to an NCI-designated cancer center for definitive dx and eventual tx of my BC. The cancer center is at a large university hospital 2 hours away, but they have a comprehensive breast health center and that's made all the difference for me.

My BC was dx'd at the breast health center nearly 2 years ago. I was immediately assigned an "oncology team" consisting of a breast surgeon (who is a surgical onco), a med onco, and a radiation onco. I chose a mast/SNB with no recon, and I didn't need to see the rad onco again after that introductory appt. My surgery was in Feb. '08, and I finished chemo in June '08 (17 months ago).

I see my breast surgeon once a year. She has been ordering annual "diagnostic" (not screening) mammograms on my remaining breast, and I get the results before I leave the mammography center. My appt. with my BS is an hour or two later that same day.  She reviews my mammo results, goes over my medical history and anything else that needs to be discussed, and does a very thorough exam of my mast/SNB incision, chest wall, remaining breast, armpits, nodes, etc.  She's the doc who gave me prescriptions for lymphedema compression garments and LE therapy.  I asked her last time (Sept. '09) how long I could continue to see her, and she said for 5 years; after that, I could "transition" to the long-term "cancer survivors" clinic.

In between visits with my surgeon, I see my med onco. Those med onco appts. end up being twice a year, separated from the BS appts. by 3 or 4 months. My med onco and BS are at the same cancer center and they work together (weekly meetings to discuss patients, coordinated medical records, etc.). My med onco said she wants to monitor me as long as she has me on Arimidex.  She orders blood work at every other visit, watching to be sure the Arimidex isn't doing bad things to my liver.  The results of the blood work are available in time for my appt. with her that same day.  She also takes a medical history and discusses stuff with me; and she does a very good breast exam (different pattern, but just as thorough as the one my BS does).

<sigh> As of this year, I've also been going to an osteoporosis specialist at the university hospital.  That's because 1) I am on Arimidex; 2) I already have very early osteopenia (as per pre-Arimidex baseline DEXA); and 3) I have "idiopathic hypercalciuria," which causes me to excrete way too much calcium in my urine.  So, the osteo doc has me on a drug to reduce that unusual loss of calcium; plus, I cannot take the mega-doses of calcium and Vitamin D that other women take or I would get kidney stones.  The osteo doc has scheduled my next DEXA scan and a follow-up appt with her next summer.  She doesn't do a breast exam or anything else.  I'm hoping my DEXA is okay; otherwise I'll be seeing even more of her, because she's the one who would put me on a bisphosphonate.  I would not be seeing her at all, if it wasn't for that darn hypercalciuria.

There's another doc who "handles" my breast exams....  my GYN.  I don't trust him, though. He's okay for the necessary exams "down there" and for PAP smears; but his breast exam technique is way too hurried and incomplete.  That's okay -- my onco docs cover that ground for me.

Finally, I have a conscientious PCP (the one who referred me to the breast health center 2 years ago).  He oversees my general medical care, including meds for blood pressure, cholesterol, and low thyroid.  That means blood work and a "routine" visit with him every 6 months. I really, really don't think I need to see him that often, because I have all those other docs I must see; but he won't renew my prescriptions without a recheck every 6 months. 

BTW, don't assume that you would automatically get alternating mammograms and MRI's if you were being followed at a big cancer center.  In my case, it's just the opposite. My BS and med onco follow the NCCN guidelines (which the two of them helped write, apparently); and I am not in the "high-risk" category, according to the NCCN definition of "high risk."  From what I've seen, my insurance company follows those same guidelines, which are also consistent with the guidelines from the American Cancer Society on the use of breast MRI for screening.  I'm not complaining -- someone has to set the guidelines, and my insurance company hasn't balked at anything else related to my BC dx or tx ... so far, anyway.

otter 

kira66715

I get alternating MRI/mammograms every 6 months, and it was triggered by the radiologist who did my first diagnostic mammogram after radiation: he came out and said, "You're very dense and I'd recommend an MRI--if insurance covers it."

The bs said she'd order it, but I had the med onc do it instead. And insurance approved it.

At this point I actually have 2 med onc's--I was supposed to be in a clinical trial at Dana Farber, but it was delayed so long that I missed the enrollment--it's to evaluate tamoxifen metabolism and was to begin last June, and still hasn't started, and you have to be in your first year of tamoxifen--so I'm no longer eligible. But I like the onc up there, and he put me on the 6 month schedule, so I kind of drifted into 2 onc's. I try and space out their visits so it's every quarter.

Kira 

Leah_S

I finished treatment (mast, chemo, rads) in mid-Aug. Now on a schedule of seeing med onc every 3 months. He recently said, go for mammo and u/s so that's scheduled for this week. Don't see rad onc or bs for folow-up and frankly don't see a need - med onc will check what needs to be checked.

See gyno once a year. After I started the tamox she sent me for u/s. See pcp for anything else (like the bladder infections the tamox has been giving me, etc) but with all the medical "stuff" I've had there's been no need for a regular checkup.

However.

It took me 3 1/2 weeks from the time the onc said to get the mammo and u/s for me to pick up the phone and make the appt. Am I stressed by it?

Freaking out would be a better description.

Leah

kk69Z

I just finished seeing my radiologist. (I saw her for a year) Now I see my onc. and bs alternating every other quarter for five years. Well I have four to go. And get a mamo on cancer boobie every six months.

unklezwifeonty

Move your care to medical oncologist or primary care doctor. There is very little reason to have the radiation oncologist be your main caregiver.

Brenda_R

There will never be a time when you will quit seeing your medical oncologist. You will always see them at least once a year, for the rest of your life.

I prefer to have my onc order mammograms. It saves on yet another doctor appt.

I quit seeing rad onc a year after my last rads, and my surgeon after my staples were removed.

mumito

I still see all 3 oncs but alternating one every 6 months for followup.

ADK

I am like Marie - I never had a medical onc except for a couple of visits, but didn't do chemo nor anti-hormonal, so there was no need in my mind to see one.  I was dxed with DCIS/IDC stage 1b in March of 2006, but I had a lump since June of 2001.  I only needed surgery & rads (I refer to it as the Sheryl Crow version).  I didn't bother with the annual follow up with the rad onc, but I do have a chronic disorder unrelated to breast cancer that I see my PCP for every quarter.  I ask him to order a MRI for me once a year because I won't do mammos.  This year, I got stuck with a bill for a co-pay of 150 for the MRI, so I am thinking about stopping that, although, it probably is worth 150 to know everything is okay.  I'll decide that when the time comes.  I will admit, my PCP does not feel comfortable being my only doctor and he keeps trying to send me to the breast surgeon also.  I think what we need to remember is that breast cancer is not one disease - it is many diseases that present in the breasts.  Some of us need little or no treatment because what we have isn't an extensive disease.  Some of us get totally whacked with the worst of it.  I honestly don't think it will rear it's ugly head in my life again, but I think I am one of the lucky ones that had little disease.  Our follow up needs to be appropriate for the disease we had.  

kimbly

I  have the 'many eyes' attitude too.  I see my onc every 4, my breast surgeon every 6 and my gp yearly.  Everyone one of them does an exam.  I will continue to do this.  If i were to just choose one, I would choose my onc. She is an expert in the bc field and I trust her immensely!