Screening After Bilat-Mx

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NSJ2
NSJ2 Member Posts: 227
edited June 2014 in Living Without Reconstruction After a Mastectomy
Screening After Bilat-Mx
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  • NSJ2
    NSJ2 Member Posts: 227
    edited October 2012

    Hi All

    Hope it's okay to ask, but once you've had a bilat-mx how do you screen for BC after that?

    Is it solely a visual/manual self check? Or an equivalent done by your doctor? Are there MRIs that are still done?

    NSJ2

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  • Outfield
    Outfield Member Posts: 1,109
    edited October 2012

    NSJ2, sure it's OK to ask!  I'm not sure if there's a standard recommended screening protocol, like after a lumpectomy.  I also don't know if it would be different for someone who had DCIS as you did, versus my stage III IDC (and DCIS, and LCIS).  I can tell you what I have done.

    I have an exam by my breast surgeon and ultrasound of my chest every 6 months, and at the faintest whiff of a problem I get an MRI.  I also get chest exams by my oncologist every 3 to 6 months, and the radiation oncologist every 6 months, but honestly I trust the surgeon's exam the most - she's the most thorough.  

    Sometimes it feels like overkill, but I had such a big aggressive tumour I don't mind.

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  • nagem
    nagem Member Posts: 353
    edited October 2012

    I get a thorough pat-down at every checkup, plus blood tests (with tumor markers) from my oncologist.

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  • otter
    otter Member Posts: 6,099
    edited October 2012

    NSJ2, it probably does depend on your risk of recurrence. With "pure" DCIS, your risk is lower than it would be for invasive BC (especially the higher stages). Mine was Stage I - no positive nodes, but the tumor was 1.8 cm so I barely missed being Stage II.  I had a left mastectomy w/o recon, so that's the side I'm comparing to your situation.

    My mast-side screening consists of self-exams and clinical breast exams. My docs do not order mammograms on that side - there's no tissue left to be grabbed between the plates. (Okay, if they wanted to squeeze my shoulder ligaments in there, that would be possible but there'd be a lot of screaming and someone besides me might get hurt.)  So the docs do a careful look-see, and they palpate all over my chest wall, especially along the scar line and under my arm. (I had 3 nodes removed.)

    I did have an MRI one time, after I fussed at my surgeon that the tissue in my remaining breast was too dense to see anything on a mammogram. The report from that MRI mentioned the absence of any "activity" in my left chest wall and axilla (the mast side) even though the goal was to examine the right side.

    The NCCN guidelines for surveillance after BC treatment do not recommend measuring tumor markers in women who had early-stage BC.  That's why tumor markers aren't part of the surveillance program for me, at least at the cancer center where I've been treated and followed.

    I'm sure there are different approaches at different centers, though; and each doc seems to have his/her preferences.

    otter

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  • crystalphm
    crystalphm Member Posts: 1,138
    edited October 2012

    I am so surprised, I was going to ask this same question myself tonight!

    I am getting checked every six months with a "pat-down"...but it worries me. I feel things over where the lymph nodes were removed, the doctor says that is where stitches held everything together...but how am I supposed to know?

    I don't know why no mammogram upsets me because the mammogram never found my cancer anyway...but I wish there were a more precise test. I have had both breasts removed...no recon, and like said above, there would not be enough tissue to do a mammogram.

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  • Cher56
    Cher56 Member Posts: 187
    edited October 2012

    MAKe I'm a so glad you posted this question & you all replied! I'm so confused lol.I had bi-lat mx& had 3mths of 3 bug infections...so my healing came almost to late for chemo (in r right now) but I have lots of lumps especially above my scar (underarm to underarm), after all thus Romeo kept thinking no one has even felt these lumps & its Been 4mths since surgery so huh? What IF? Finally got MO#2g fantastic Dr)& he'd examined me & then I said please please feel these lumps....he spent a quite a but of time checking, said he's not sure if scar tissue but definitely not tumors! Whew! I've wondered as 1st Onc said, ok, your cured!(Wth?) & a 75% good prognosis without treatment,& thus is good (huh lol?) At no time so far has any one mentioned about future check ups &I read on posts how so many have checks...there was disagreement about my type of BC but i believe & trust my new MO so I see him I in the 30th & boy do I have more questions....adding this too big time!

    I sure don't know what I'd do without this forum! (I'd fired my surgeon & have appt with PS end Nov.so hopefully she'll have more knowledge about the damn lumps!...the PS isn't for recon....no way...its for the mess on my chest)

    Hugs Cher

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  • cinnamonsmiles
    cinnamonsmiles Member Posts: 779
    edited November 2012

    Hi,  you  may want to post this in the DCIS forum. I know I have brought it up in that section. DCIS is treated differently than other cancers, for the most part, because it is only in the milk ducts.

    I am in the same situation as you, trying to figure out who is going to be checking up on me at least once a year. I had DCIS, grade 1, er and pr+. I had lots of DCIS and precancer, but clean margins with the double mastectomy.

    For those of with DCIS and double mastectomies, we aren't always treated as aggressively as other cancers. Oncologists don't want me because, I didn't need tamoxifen or chemo or rads. My family dr. doesn't feel comfortable keeping an eye on me once a year or so. My breast surgeon left the area, so I have a new appt. with a new breast surgeon, but she doesn't really want to see me because I don't need any surgery. SO, I am caught...and trying to figure out what to do.

    I think you would have much more luck posting this in the DCIS forum. Like I said, I posted this same topic and got a few replies that had various types of post treatment check ups.

    DCIS will not be treated the same as most stage 1, but especially stage 2 and higher. DCIS is a different animal since it only occurs in the milk ducts.

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  • kathindc
    kathindc Member Posts: 2,042
    edited November 2012

    I had BMX surgery back in June.  Left side was curative, right side was preventive health care.  Just went to my GYN for my yearly checkup and he examined me as if I still had breasts.  Was wondering how or if it would be done.  I found that very interesting.  And no more mammograms! 

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  • Momine
    Momine Member Posts: 7,859
    edited November 2012

    Of course it is ok to ask, but I think it depends on stage, your doctor, age etc. My cancer was locally advanced, stage III. I get checked every 3 months. For each check-up, I have extensive bloodwork that includes three different tumor markers. Once a year I have a CT scan and a bone scan. The check-up itself includes a careful physical exam.

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  • Momine
    Momine Member Posts: 7,859
    edited November 2012

    Outfield, that is interesting, because I asked about ultrasound and both the surgeon and the onc waved it off as useless. I don't get that. It would seem to me that it could be helpful.

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  • kmpod
    kmpod Member Posts: 234
    edited November 2012

    Hi NSJ2

    I recently passed the one year mark for my BMX. The right side was the cancer side and the left "prophylactc" (several foci of ADH were found there). I had no reconstruction and I'm taking Arimidex.

    I asked my GP to set me up with an ultrasound, which caused some confusion at the local radiology department since I had no breasts to mammogram. Apparently, here in Ontario a breast (chest) ultrasound cannot be billed to OHIP without a preceding mammogram. They thought about it for a while and came back with the suggestion that I have an "axillary" ultrasound - which I did. It was clear.

    When I reported that to my onc when I saw him shortly thereafter, he sniffed and let me know I was wastng the system's time. My now yearly followups with the onc consist of bloodwork and a manual examination. I believe that if I wasn't enrolled in the metformin trial my care would have been turned over to my GP after this last visit.

    It seems to me that here in Ontario they really don't look for anything further until you report symptoms. 

    Has anyone else had a different experience?

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  • cinnamonsmiles
    cinnamonsmiles Member Posts: 779
    edited December 2012

    I have been looking all over the internet (with the help of Beesie) and I have not found any standard of post treatment care for those that have pure DCIS and a bilateral mastectomy. DCIS is different that stages 1-4 so what applies to them, may not apply for pure DCIS. In theory, DCIS is only in the milk ducts, and once the milk ducts are gone, so should the DCIS. We know that we are never cured, but we have a considerably less chance of getting it (bc) again. Although, I have heard of 2-3 people that got DCIS or a higher stage back, but I would think it is extremely rare. The surgeon who did my BMX has now left the area, leaving me hanging. So my family doctor does a clinical NON breast exam on me once a year. I have an appt. after Christmas with a new breast surgeon to get her take on things. I have also heard of some women getting a yearly ultrasound instead of mammograms.

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  • crystalphm
    crystalphm Member Posts: 1,138
    edited December 2012

    Interesting Cinnamon, I will be asking my doctor at my 6 month check-up. It makes sense that if you have no ducts, you can't get DCIS...

    But there is also something very uncomfortable to realize there is no standard of care after DCIS with a mastectomy. It feels vulnerable.

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  • cinnamonsmiles
    cinnamonsmiles Member Posts: 779
    edited January 2013

    Recently I had a consult with a breast surgeon who is only out of med school somewhere around 10 years. She told me that for DCIS and a BMX, I only need a clinical "breast" exam. I call it a non breast exam. They feel around my chest where my breasts were, armpits, and she suggested up my neck. She said there is no need for yearly ultrasounds (and therefore I assume no MRIs).

    The surgeon who did my BMX according to the new breast surgeon, is old school. Saying that check ups every 6 months are not necessary. The surgeon who did my surgery, left the area almost a year after my surgery, so I don't know how long she planned on seeing me for check ups.

    However, seeing as that a formal, written standard from an accredited organization is impossible for me to find at this point. Where the second surgeon I saw got her information, I do not know. HOWEVER, she had an OLD SCHOOL view on LE. She said that getting bilateral and truncal LE from sentinel node removal is almost impossible and unheard of. Evidently, she doesn't read the breastcancer.org LE forum.

    So, she is old school regarding LE, can I trust the rest of what she said? Who knows.

    All I know is that I know I have very little chance of breast cancer coming back (although I have read cases of bc coming back after a bmx for DCIS). I am comfortable with yearly exams from my primary. You would think that because I had breast cancer, I would perform monthly exams on myself, but I don't. I am just as lazy about it now as I was before DCIS...

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