High Risk From Personal History - Follow-Up

percy4

Hi All - I'm usually in the DCIS section, though I had a microinvasion, which technically puts me at the lowest Stage 1.  I am deeply unhappy with my HMO's (and most insurance companies, in CA, at least) standard follow-up, which is this.  A family history (without genetic testing), or your first cancer being detected by other than mammogram, qualifies one for alternating mammos/MRIs.  And ultrasounds.  A personal history of BC, which makes one much higher risk than the first-degree relatives I made higher risk by having BC, does NOT qualify one to have those tests.  As per the American Cancer Society.  Of course, it is I who am at the highest risk.  Clearly.  The rationale is that they do not have proof (though it is probably so) that doing these other tests as follow-up decreases mortality.  Even so, I believe I am entitled to know about a new BC before it has spread to my nodes, or will take my breast , or will warrant chemo, even if it isn't going to kill me.  And mammos only show a not-so-big percentage of BCs, which, in my case, could be another DCIS/micro, or, as we all know, could be a totally different BC; one that could be seen better/earlier with US or MRI.  Obviously, if there is no decreased mortality by testing me, there isn't decreased mortality for my first-degree realtives, but there it is.  I am just done with treatment.  I've already discoverd, from other questions, that my MO goes stictly by the basic standards (though she has the ability to order tests outside that), and that she consults with the other 5 MOs at my facility, and others nearby, and gets back to me with answers like "I've consulted with all the other MOs here, and they agree with me you don't need this or that. But I'd be happy to refer you to one of them".  For what?  They already agreed.  So.  My question is this.  No. I can't afford, nor am I able to, mid-year, change my insurer.  Do any of you have info or links to things that show that follow-up for women who have had a BC (and, therefore, have a four-fold higher risk of a future BC than other women; higher than any relative) would be better served with US and occasional MRI, in additon to mammos? I need something to show them (Patient Relations) when I become the squeaky wheel.  I've been very lucky, but the earliest detecton about a possible new BC in future is what I really need.  Mods; any advice?  Thank you all. - P. xx

NancyHB

Percy - so sorry you aren't feeling supported in your current treatment plan (or, rather, lack thereof).  While it doesn't make the current situation better for you, I believe that what you've been told and are experiencing is typical and standard for most of us.  I had IDC with ITC in four nodes (but considered node negative), a high Oncotype score (high risk of recurrence) abd cannot tolerate Tamoxifrn and AI's - and I can't get any screening other than yearly Mamms.  My MO explains that they cannot "stop" or catch mets; if that happens then the "horse is out of the barn" and we treat accordingly.  And if I get a local recurrence, we deal with it then.  It seemed counter-intuitive to me - why not work to catch it early? -but I realized that's exactly what we're doing.  Being aware of what HAS happened means my docs and I are super-attuned to any changes or differences in my body.  And since I'm seeing someone every six months, there really is a lot of screening taking place.  I had a recent scare - new lump at lx site - that my MO was convinced was a recurrence.  I spent almost 2 months in panic to find out it was scar tissue.  But the protocol worked.  

I know it's a scary time.  We can't prevent this from coming back (short of doing what we can do) so we sorta have to just take it a day at a tine.  *hug*

edwards750

Percy - there are a lot of women on this forum who can relate to your predicament. I think doctors, hospitals and the like are under constant pressure to do just what they have to do - no more, no less and we know that theory is financially driven. Fair - no but it's reality. 

My mother had BC and now both my sister and I have it too. Could you be anymore higher risk than that yet my insurance co pre-BC DX would not approve a diagnostic mammogram. Go figure but they do now. I have IDC Stage 11, Grade 1. Micromet in S/N. ONC ordered Oncotype test thankfully and my score came back@11. I dodged chemo because of that test. I did have a lumpectomy followed by 33 RADS treatments and currently taking Tamoxifen. I am 3 1/2 years out. My sister had ILC and had a MX and taking Arimidex. She didn't have chemo or RADS she is 2 years out. She has routine scans given the kind of BC she has. Very expensive but she has good insurance. 

I have never had a scan, MRI or ultrasound. My BC doesn't warrant those tests. I don't push for them mainly because I yield to my ONC. Again don't need them 

I wouldn't like my ONC ganging up on me either although its encouraging that they all agree or so they say. There are a lot if doctors out there but I understand switching insurance companies isn't an option. I couldn't either. Again money driven and its only going to get worse unfortunately. 

Right now I guess you are stuck but you still have a early stage cancer which is also encouraging. Keep us posted. 

Diane 

april485

Hi Percy,

I know how you are feeling in that I feel the same and I did not even have any micromets. But, it is the standard of care. I do still see a lot of doctors because of my clinical trial for my rads and because I take an AI, but it is still scary. My mammo is next month on the 5th and it will be my 2nd since diagnosis and I am already nervous even though I have no reason to be. I will see my BS after the mammo and then she will see me in a year for my next mammo. I see the rad onc every 6 months and the MO every six months and of course my gynecologist (I will see her on the 18th of July) and my PCP for yearly exams.

 BC robs us of confidence in our health and there is not really anything we can do about it short of working hard to be vigilant and an occasional stiff drink (lol..just kidding, I don't even drink anymore since I got older..ha!) so please try to relax and know that what you are feeling, we all feel.