Follow-Up; not OK

Thanks, all.  I do see, and I did know, having been told repeatedly by my MO, that MRIs and ultrasounds are not recommended as routine folllow-up after a BC.  The ASCO site has a large disclaimer after their recommendations, however, basically stating that their recommendations are not to be taken as the standard of care, and that docs should use their own judgement.  I have such a low chance of a distant recurrence that that isn't what concerns me.  My concern is catching a possible new BC or recurrence in the breast in future while it is still early, before I need a mastectomy or harsh treatment.  Article after article tells me that a lot of BCs are not seen on mammo, especially in dense breasts.  They sent me a letter stating my breasts were dense and that because of this, a mammo might not show a cancer.  Then they tell me they will not do anything about this (other types of breast scans).  They will give my first degree relatives US and MRI, but not me.  So what I'm saying is that doesn't make any sense, right there, and therefore the recommedations are wrong.  By the way, the letter they sent about my dense breasts is something they are mandated by law to do after a woman made a campaign about  this, because she had dense breasts, had her mammos every year, and her BC wasn't seen on mammo till it had spread to her nodes (though if I recall correctly, they then told her that it had probably been there a few years).  Obviously, they shouldn't just tell you that a mammo may miss a BC in your case; they should then do something more to make sure a BC is more likely to be seen.  At least an ultrasound, which can shows things mammos can't.

Thanks, SpecialK - No, the HMO has not informed me, the MO has, and I believe her fellow MOs there will do the same.  They are a tight-knit group who discuss cases all together.  I intend to go to Patient Relations, but the doc informed me that she is meeting the HMO's standard, so... I'll go with my "dense breasts may not show cancer with mammo" letter they themselves sent me, and be a really squeaky wheel.  This is in Sept. or so.  Yes; to not give me at least US is short-sighted, but the MOs there are like robots; they keep repeating the same party line, though they have the power to order what they want.  And, as to family history, while I technically don't have one, I have only ONE female relative to go by, my mother, no blood aunts or older sisters, and my grandmother died in an accident at 40.  This is my Jewish half, which is more prone to genetic BC, so who knows if my female relatives would have had BC, if there had been any female relatives?  I told the MO that; she was unmoved.  Thanks for your support.  Yes; distant recurrence does not concern me.  My chance of that is like 1%.  If anyone has any links to articles that support alternating MRIs/mammos/US for follow-up, I'd appreciate them here.  I'm not too computer-savvy, myself.  I have seen women here whose MOs order those things for their routine follow-up in cases like mine, so I know they exist here.  Thanks again. xx

I just have to say.  I REALLY resent this.  Having to argue and fight to be given tests that could change your life is just wrong.  As I said, mortality isn't the only thing.  I need to know about a new BC or recurrence in my breast, hopefully, before it gets too big/advanced.  Which, technically, could save my life at some point, depending on the nature of the new BC or recurrence in the breast, and how early it is found (pre-nodes, etc.).  I was hoping to put BC behind me, save the things I need to do to be doing all I can.  If I can't have the right tests, I can't be doing all I can, and I can't move on.  The input from all you ladies (and, thank you especially, SpecialK) has really helped, and has also let me know that I am not alone in my concerns.  As usual, BCO is an amazing support. xx

Thanks for all the input.  I'm interested in knowing more about the 3-D mammos, as well.  I hear the fact that MRIs miss a lot, and also find a lot of false positives (though I'd be willing to have extra biopsies rather than not enough).  I can also see how "needle in haystack" screening US could be, and how important it is to have a really skilled radiologist do it.  However, if my dense breasts make screening mammos largely ineffective, I'm going to need screening USs, even if tedious.  I simply have to be doing all I can.  "Pain in the ass" though I may be.  My HMO tells me I am at a 4x increased chance of another BC, as opposed to a woman who has not had BC.  I have been very lucky (probably).  My body has warned me, and, thankfully, it was caught (mammos ARE good at seeing calcifications; however, a new BC, which I am at higher risk for, now, may NOT be calcifications next time).  So.  I have aging parents, children who need me, and 30-40 years of a life to live.  My purpose is to catch a new BC very early, in the breast, if that should happen.  Period.  Because if it should happen, the prognosis may not be as lovely as it was this time.  I get it.  My body, with no family history or particular risk factors, made a cancer in my breast.  I don't know why, but it would seem I am a bit predisposed.  I am doing self-exams every two weeks, without fail, in case it happens again, but presents differently next time.  I think we should all do that, like brushing our teeth (node area, too).  This is one benefit of being small-moderately breasted.  Lying flat, I can feel basically to my ribs.  Though I know a cm. lump in the middle tissue would be hard to feel.  Just saying; I'm doing my part.  And the ongoing execise to cut recurrence chance, as well.  Doing that, though I don't love it (the rowing machine is great, but kicking my butt!), and don't know where I'll fit it in when I go back to work.  I just don't ever seem to get that endorphine rush that many do, so it's a chore for me, start to finish, though I like going, and the women there, and stretching, and how I feel after.  Just not during. Still; that's my job. now.   Best as we can, we have to play as big a part as we can about our health.  And, truth told, though it's not an imaging, it does make me feel better to know I am helping to prevent recurrence/another BC.  My RO showed me studies that have shown that ongoing, serious exercise for life cuts BC recurrence by over 30%.  So.  There's me doing my part.  I want to see my HMO doing their part.  Not just the minimum, but the tests that will serve me.

I apppciate your concern.  And I get that my docs may be caught in a hard place.  Still; this is my thing.  I clearly have to be my own advocate.  My mammos were advised at 2 years, not one.  Now, I see that all women over 50 should have yearly mammos.  If I'd known that, if it had been yearly, likely I might have not had the micro yet.  Which can kill me, in time.  I have to get the screenings I deem important, because they are doing the least thing advisable.  I am going to do all I can, even if I seem to them like a b****.  I am happy to be here, with women who understand, and I am surprised to see that so many other women are concerned about follow-up.  I think it's a big issue.  Really; for women in my position, whose next BC may be worse, it is the only thing.  If an US, though tedious, may show something sooner, then I want that.  I am really unhapppy about having t do it, but I will.

If I have a good prognosis I deserve to keep it. If I kept my breast. I deserve to try to keep it (and, God knows, I am deeply sorry for those who didn't).  If I didn't need chemo this time, God willing that will remain the same.  No woman here, no matter what has happened to her, wishes the same on me.  I am just trying to protect myself and my family.  Sorry if I sound defensive, here. but I have come through this initial BC pretty unscathed.  There is no assurance that would happen again.  I just want to protect myself and my family.  And sometime, apparrently, you just have to go all-out to do this.  I have never been in this position.  I appreciate all of your good input.  Still; at the end of the day, it looks like I'm going to have to be REALLY whatever to get what I need.