Six Months Rotation...

Options
sharkbait
sharkbait Member Posts: 5

Hi everyone,

My breast specialist has recommended that I be followed every six months rotating between mammograms and MRIs.

I went to see her because I wanted a second opinion on the radiologist's mammogram report that showed a couple of possible complex cysts that they recommended I have a repeat mammogram in six months to check.  When I went for the appointment, the breast specialist went ahead the same day and did a stereotactic biopsy.  Thankfully, the results were benign and they were complex cysts as the radiologist had suspected.

My mother had breast cancer when she was 55 and her pathology report showed adenocarcinoma and it had metasticized.  She had a bilateral mastectomy, chemo, and radiation and is doing well 23 years later!  

To my knowledge, there are no other first-degree relatives that have had breast cancer.  I'm 51 and had my first baby at 25.  I took birth control pills on and off for 8 years when I was in my 20s.  I was a late starter with my period (age 15). Never smoked, don't drink. So, other than my mother having had it, I have no other risk factors and am not real sure why she thinks I need the screenings so often.

While part of me is thinking that if I have the screenings done every six months it will be a good thing because anything that shows up would be caught early - part of me is upset that I will have to go through all the worry and dread that goes along with having the tests done and the waiting for results every six months of my life.

So, any advice on whether to accept her recommendation of the every six months screenings?

Comments

  • J9W
    J9W Member Posts: 395
    edited November 2011

    Hi Sharkbait.....while it really is annoying to be on the six month split, you probably should do it. If you don't, it will be each year and you'll be nervous for the entire year. I am now on the six month schedule of MRI and mammo. I was dxd with DCIS in August 2009 and had a mastectomy. I get nervous each time I get close to test time - but most of the time I just let it go because I tend to believe that with check ups every six months, if something is found it 'may' be caught early.  Plus, I have decent health insurance that allows me to get the tests every six months - not all insurance will allow it.

  • dlb823
    dlb823 Member Posts: 9,430
    edited November 2011

    sharkbait, I could be wrong, but my first impression is that being tested every 6 mos. is extremely aggressive testing, and I'm not sure from your post why that's being done.  Do you have any problems other than what was dx'd as a benign complex cyst?  Your Mother having cancer @ 55 isn't particularly young, and adenocarcinoma isn't breast cancer.  Did she also have bc?

    The other question I have is, at what type of facility is the breast specialist you mentioned?  If an NCI-designated cancer center with a high risk program, then I would be more inclined to think this is the right approach, perhaps due to other factors you haven't mentioned.  If a local breast center, although I'm not a doctor, I'd need more convincing that the additional screening is worth the extra radiation risk and that annual MRIs are really necessary.  JMHO based on what you've shared above...    Deanna

  • dlb823
    dlb823 Member Posts: 9,430
    edited November 2011

    PS ~ In thinking about your situation more... without a definitive diagnosis, I would be very surprised if your insurance will cover even a first MRI, no less annual ones.  Just something that occured to me after I posted above.    Deanna

  • Anonymous
    Anonymous Member Posts: 1,376
    edited November 2011

    I would have to agree with dlb-------without a positive BRCA test result, a diagnosis of bc or at the very least atypia, your isurance probably won't cover MRIs.  I was diagnosed with LCIS (a stage 0, in-situ bc)  and my risk is further elevated by family history of bc (mom had ILC); and even with that high level of risk, I have to jump thru hoops now to get my insurance to cover my yearly MRIs  (they cover most of it, but not all, so I always have a balance to pay). Also, MRIs are very good at picking up all sorts of benign "stuff", then you may end up with unecessary biopsies and the anxiety that goes along with that. I am willing to take that risk because my risk of invasive bc is high, but I wouldn't have before my diagnosis just because of my family history of bc.

    Anne 

  • sharkbait
    sharkbait Member Posts: 5
    edited November 2011

    Thanks for the replies everyone. When I go for my followup mammogram in May I am going to ask a lot more questions before I agree to the every six months deal. i have not been tested for the BRCA gene and other than fibrocystic breast disease and my mother's history I have no other risk factors. i should have asked more questions when i went to have my biopsy site checked but i was so surprised by the recommendation that it caught me off guard.



    Deanna, my mothers pathology report from 1989 says "infiltrating duct adenocarcinoma" and it says ERA binding sites positive and PRA binding sites positive. Any idea what that means as far as the tyoe of cancer she had and whether or not it is highly heridetary?



    Thanks again!

  • amanda1116
    amanda1116 Member Posts: 127
    edited November 2011

    Hi, sharkbait

    My story is quite like yours in so many ways.  I too have mammo and MRI alternating every six months.  In fact I just had a mammo today (it was all clear).  The fear and anxiety are horrible surrounding the screenings.  I am more terrified of mammo than MRI for some reason and in two years the MRI picked up three things: two tiny fibros and a tinier papilloma.  That mean three biopsies and an open surgery, all B9. The mammo by the way has never seen a single abnormality (knock wood) and I have been having them since the age of 26 (20 years) I hate all of it and was and am a basket case for weeks before each mammo or MRI.  I seriously once was so thrilled that my mammo was A-OK that I pranced out of my doctor's office through what I thought was an open door which was a thick glass closed door, crashed into it head first, and got a concussion.   That is how out of it I am before during and after mammo (or MRI) day, week and month.  Scary

    That said we are so lucky to have technology like digital mammography and MRI.  Quite simply, they save lives.  Maybe yours or mine oneday.  If you can afford it and can bear the stress, I say go for it.  I am seriously the most freaked out breast care patient I have ever me and even I just grit my teeth and go through this crap.  My radiologist (who is wonderful) told me I have young daughter, if I am not doing this for me, do it for her and just suck it up.  Never a truer word was spoken.  By the way, you posted this yesterday, November 16th, which is my daughter's birthday :):)

  • Anonymous
    Anonymous Member Posts: 1,376
    edited November 2011

    sharkbait------sounds like she has IDC; that is positive for estrogen and progesterone receptors. (which means it could respond favorably to hormone therapy).  It doesn't address whether or not it is hereditary... I think only a BRCA test can do that. There's a long list of criteria that genetic counselors look at to suggest if it might be hereditary.

    family history of bc; especially premenopausal 

    family history of ovarian cancer 

    family history of male bc

    Ashkenazi Jewish heritage

    bilateral bc

     and several more very specific ones (that I can't recall at the moment)

    Only 5 to 10% of all bc is hereditary, so it's not very common.

    Anne 

  • ppplocke
    ppplocke Member Posts: 44
    edited November 2011

    If you can get insurance to cover it I think you should definitely do it. Just my two cents of course. I have a number of friends with NO family history who are moving to this type of rotational testing. I wish I had been given that opportunity. Could have put me at a much lower stage.

  • Chickenpants
    Chickenpants Member Posts: 132
    edited November 2011

    I ended up in that elite "every six months" club.  I am 5 months out from the fateful screening mammo I had which showed a tiny (2 mm) suspicious area.  Anyhow, I have had multiple diagnostics and biopsies, an excisional lumpectomy, an MRI and we're still not done - the MRI showed an area of suspicion (7 mm) in the opposite breast, now another ultrasound guided biopsy scheduled.  I don't know how much more I can handle of not being in the know as to what's going on and what type of treatment I will ultimately need for my various conditions in my busy breasts (fibroadenomas, ADH, LCIS, DCIS), small breasted *34 small B*, and no family history or other risk factors other than being female.  Go figure.  My surgeon told me the other day, it's like a wild goose chase and where does it end?

  • CLC
    CLC Member Posts: 1,531
    edited November 2011

    I was on the 6 month rotation for a year and a half.  Initially, suspicious calcs.  Six months later, they'd changed, so stereotactic biopsy that showed adh, excision.  Six months after that, more calcs.  Six months later, they'd changed, so sterotactic biopsy that showed dcis, mastectomy.  I am so glad I did the 6 month rotation because we caught the cancer at the earliest possible moment and I don't have to have rads or chemo.

    My understanding of whether insurance pays for the mri is generally based on the risk assessment using the GAIL model.  If it is over a certain percentage, mri's get paid for.  You can google it and use a calculator right off the web.  My onc used the gail model after the adh diagnosis and found I had a 28% lifetime risk, so I qualified for the mri.  The mri is great, partly because it has a higher sensitivity, but also because it does not increase exposure to radiation, but allows for another check during the year.  In my case, it was the mri that caught the dcis.  Who knows where it would have gotten to if I'd had to wait an entire year, rather than 6 months.

    I don't know much about cysts, but I think that before you decline the regimen of 6 month testing, you should get a second opinion from a highly recommended bc center/doctor.  I am not one to follow everything the doctors prescribe without question (I will be declining tamoxifen, for example).  However, knowledge is power.

    I wish you the best of luck...

  • SarahsMom
    SarahsMom Member Posts: 1,779
    edited November 2011

    Member of the 6 month club here, for the last 4 years. Crazy roller coaster ride, for sure! I am high risk due to a number of factors, so this will just be a way of life for me - BIRADS 3 , probably benign, and we'll see you in 6 months. Frustrating, but I feel like I need to do it just in case. "Watchful waiting" is not a great phrase, but I feel like that is a mantra of those of us in this situation.  

  • DocBabs
    DocBabs Member Posts: 775
    edited November 2011

    It's not unusual to bring back someone in 6 months for a follow-up mammo but that doesn't necessarily mean that you will have to go back EVERY 6 months.I was on that carousel for 3 years and you just get used to it.This May I was diagnosed with IDC and had a BMX. Funny thing is my mammo 6 months prior and my mri 2 months prior to the diagnosis were negative!

  • SarahsMom
    SarahsMom Member Posts: 1,779
    edited November 2011

    Hi DocBabs! I use your story as an example of the need to stay vigilant. I think if they want to see us every 6 months, there is a reason. I am used to the ups and downs of it all now, I think.  I have also synced my major house and garage cleaning/clutter clean up with these checks, it helps me get rid of my nervous energy to clean and tidy things up! 

    Happy Turkey Day! :-)

  • DocBabs
    DocBabs Member Posts: 775
    edited November 2011

    carpediem19, Happy to be of help to you. I know it's wrong but I sometimes get the urge to scream at all women with LCIS..."Get a  BMX now"!!To me that would be the ultimate proactive move.

    Happy Thanksgiving to you too!!

    Barbara

  • BritValarie
    BritValarie Member Posts: 152
    edited November 2011

    DocBabs,

    Like carpdiem1965, I also used your case to make my decision to have BMX.  My mother died of BC at the age of 38.  My grandmother at 47.  I myself have been diagnosed with ADH, ALH and LCIS.  Everytime I go for screening, they find more calcs, or find that the calcs have increased.  In the last year, I've had 4 stereo biopsies and a surgical biopsy.

    My last MRI picked up lots of things that they labeled as "probably" benign.  I have dense breasts and have been told I have several cysts in both breasts.

    I don't want the stress anymore, or the chance that there is something in there they haven't detected, like you.  So, December 7th I am having BMX with imediate DIEP reconstruction.

    I know this route isn't for everyone, but I feel great about my decision.  I do not want to spend anymore of my time, and money on testing and biopsies... and the stress that goes along with it.

    Happy Thanksgiving, everyone!

    Valarie

  • DocBabs
    DocBabs Member Posts: 775
    edited November 2011

    Valarie, congratulations on making this big decision.with no actual cancer in the picture it should provide you with a great sense of relief. While I was followed for 3 years I only ended up having 1 MRI biopsy on the opposite breast and that was benign.I chose to believe others instead of going with my own gut feelings. I will never, ever do that again.

    Good luck with your surgery.I know you'll do well .Hope to speak with you afterwards!!

    Barbara

Categories