Illinois ladies facing bc

Invisible if there is a problem with coverage don't expect that genetic counselor to help you. My problem was the insurance covered the test but didn't cover the blood draw because it was written up as "routine". I do have the number of the people who write up the codes over at Rush. Just need to dig it up… they are the ones to call. (Actually the counselor should but like I said she's useless).

What really ticked me off about her was I needed the results ASAP because I couldn't schedule surgery without know if I had to do an MX or BMX. They came in at about a little over a week but didn't call me till 2 weeks later. "Lucky" for me my MRI was able to be done sooner and we did find stuff in the healthy breast so I ended up with the BMX anyway. Surgery was scheduled prior to even finding out about the BRCA.

Initally she didn't even call me back to make an appointment. I ended up telling my BS's nurse that I couldn't get a hold of her but I had calls into U of C, Northwestern and Illinios Masonic. U of C said they could do it in 4 days… the nurse called the genetic counselor (who was actually telling me I really didn't need it). Guess who called and told me they had an opening in 2 days. BTW my BS wanted me to do it once he found out I was Jewish. There is a slightly higher risk of being BRCA+ if you are Ashkenazi Jewish. Not sure why he didn't realize at first that I might be. If you only knew my last name.

Corinne I think I saw you guys by the lake on my power walk this morning.

If you want to google what insurance companies say about BRCA testing, try googling "medical policy BRCA testing" and your insurance company. It can be a long list that depends on your age at diagnosis (45 or 50 seems to be the cut-off), type of cancer, number of tumors, number of "close" relatives who had cancer, etc. 

Did anyone have the BRCA just to see if you have ovarian cancer risk?  I had BMX and have a son, so other than that, I don't think it matters whether I have it or not. 

Zap even if you did not qualify, your daughters as adults may.   

Cathleen I am a northern suburbanite too.  Pretty close to you and closer to your hospital.  

Not only did I not win the megamillions, but I thought today was supposed to be sunny and 60 and its not!

Zap I really don't know that kind of detail about insurance without researching.

TowHobbies that would be a yes. In my case I was diagnosed at age 49, perimenopause. If I had BRCA not only would I get the BMX (which ended up being recommended anyway) but the ovaries would go too. I also have a mother, sister, brother (increases risk of prostate cancer too as well as a bunch of others) 3 nieces and 1 nephew. If I tested positive they would be tested too.

Since I was diagnosed under age 50 their risk of BRCA+ would be higher but since I tested negative I am no longer a factor.…  meaning if they test BRCA it's most likely not from my side of the family.

I'm not sure Zap's daughters would qualify due to their mother because Zap was diagnosed after age 50.

Jackie I feel the same way. My chances of getting breast cancer at my age of diagnosis with my risk factors was under 2%. My risk of LE with only 10 nodes on the left was 10%. My risk of having clear nodes, not even micromets was about 20%. I was also told the nail lifing is a rare SE and everyone of mine lifted on Taxotere. I'm on a role of "not likely to happen but did." I also played the lottery Tuesday and yesterday. I think I'm going to play again too. Hey someone has got to win. I just need to stop buying my ticket in Chicago. Seems you should have better luck being downstate a bit.

The reason I think the insurance will deny BRCA testing is because I was diagnosed right at my 60th birthday which appears to be the cut-off for my carrier.   My BS wanted me tested because my sister died at 46 of breast cancer.   My mother died of another illness at age 42 so we will never know if she might have developed BC.  I don't know much more about my history so he felt it warranted testing.  I doubt I will test positive but felt it was worth pursuing because sister and I both have daughters.  

Lago, I second that.  My son takes a medicine that would cost $3200 a month if I had to pay for it, but my god, life without it was miserable.  So I want them to keep developing more tests and drugs.  However I couldn't afford it if I didn't have insurance, and I feel bad for those who don't/can't.  There's no easy answer, but I think I could do a better job than congress at curtailing health care costs. 

Girls, our chances of "winning" breast cancer were 1 in 8, whereas our chances of winning the megamillions was 1 in 175million.  I guess that explains it why we have cancer and not millions today.  But I would like to be the "1 in __" for good things sometime.  

Hi all! Looks like I'm the only one up late.  Wanted to mention a couple of things:

Susan- it is my understanding that the BRCA mutations may present themselves in men as pancreatic, bile duct or prostate cancer.  If your husbands mother had breast cancer it is possible to pass the brca mutation on to your husband and then to your daughters through him.  It is also important to differentiate between a pre-menopausal and post-meno diagnosis (i.e., your mother in law).  It seems that BRCA mutations tend to present themselves much earlier these days.  Hence, all of the women being diagnosed in their 30s and 40s.  Crazy!

Robo47- I believe one of the reasons there is such a wide discrepancy in the cost of testing is that if there is a specific genetic marker that has been identified, Myriad Labs (exclusive to brca testing) only has to look for that single marker.  Whereas if they do not have an identified mutation they are looking for a needle in a haystack and doing much more extensive testing.  A reputable genetic counselor  will provide a letter to be sent out to family members with the specific number (genetic marker) if one has been identified. Once the marker has been identified it is much easier and less expensive for everyone else to be tested.., and hopefully in time!  I, personally, have deceased relatives who refused to be tested (for reasons of their own).  By the time I found out I was BRCA+ it was too late.  Hope this helps!  

Hope we get some sunshine tomorrow.., last day of spring break!  It went sooooo fast!!!

OK, OK!!! I'm crying "uncle, uncle."  This is too good of a topic group not to join.  I've been following all of you for several months, posting occasionally elsewhere.  

 I've been in the great State of ILL for over 20 years, so I guess I qualify as an Illinois lady by now.  I'm a state employee so like to call it the Great State of ILL for all the dysfunction we've been having to endure over the years.  I live in Chicago, apparently a rare South Sider.  I used to live within pissing distance of Sox Park, an activity more often associated with Cubs games.  Now live in a quieter neighborhood further south.  Do miss the fireworks though.  

My history is scattered around here on the boards, but briefly beyond the diagnosis below....  I had chemo following an excisional biopsy and partial mastectomy, then radiation.  Just finished rads over a week ago. Had a nasty allergic reaction to Neulasta with hives lasting 3 months.  Rads was pretty easy comparatively, now only nursing a large blister on my breast. 

Thank you all for being so welcoming of new members. 

Thanks for your response, doxie. Wow, 3 months of hives. Nasty reaction. You worked hard to save those breasts. Yes, I want to save mine too, partly because I have lots of breast tissue, and if one goes, something will have to be done with the other, too. There is no way my "bad" left breast can be reconstructed to match my big right one. And I wouldn't want it. About mammos--I did my yearly mammos like a good soldier, was usually called back for more views, because of dense tissue, but never had biopsies. I believed, and it's shocking to find out that for years I've been growing a a tumor that it didn't even see. Disillusioned. BTW--I've always like south side. Lived for 11 years in Hyde Park, although that is hardly far south side.

Hello, Doxie and welcome.  Yes, the great state of IL.  You must be seeing it up close, the rest of us only on the news. 

Jemije, I had two tumors that couldn't be seen on mammo.  I'm the one who found it.  Ultrasound found the bigger one, MRI found the small one.  My good side was also on watch and after 8 1/2 hours of mammo, ultrasound, MRI, biopsies, I decided I'd had enough.  So that's why I did the BMX.  I didn't feel if I got a clean mammo or ultrasound that I could rest easy that it was right.  It wasn't a hard decision for me, but if you're struggling with it, you can keep trying to get clear margins.  Also, they will do a lift and reduction or whatever you need on the good side to match the new one.  That's required by law.  The harder decision for me was the reconstruction. 

There are two mistakes one can make along the road to truth
- not going all the way and not starting.
- The Buddha

All things at first appear difficult.
- Chinese proverb

lisamed I think my mom is going to have one of those procedures soon… from that doctor who told her to sign so he would have permission to kill her . Her problem was caused by the back surgery she had last year. Did you want me to ask her anything?

jemije my tumor was both IDC and DCIS. It's not that unusual. I didn't know about the DCIS till they removed the tumor. I had very dense tissue. They did see something 4 years prior but they said it was nothing. Skipped the next mammo (gyno retired and needed to find a new one) but then nothing found after that. Year 4 I come in with a blood nipple… and then they found my 6-6.5cm tumor (including the DCIS).

BS ordered an MRI and saw 4 suspicious spots on the other breast, one he was really concerned about. Said I would have to do biopsies every year. Recommended the BMX and that's what I did. IT ended up a small amount of LCIS. I'm still shocked that they didn't see that big tumor the year before. BTW I was a small breasted woman so a tumor that large required the an MX… but I'm a bigger girl now

The problem is these scans are not perfect. That's why they do biopsies to make sure. I know that even before my BS recommended the BMX I was seriously considering it because they can't seem to see sh*t in my former dense breasts and breast cancer loves to grow in a dense beast environment. Dense tissue doesn't cause breast cancer but if you have dense tissue it does seem to thrive rather than die off. At least that's my understanding.

I guess my question is what does your BS recommend? Have you considered a 2nd opinion? No one is ready for an MX but if  your doctor(s) think this is best then maybe you should seriously consider. If I were in your shoes I would get a 2nd opinion. If you are not at one of the large teaching hospitals  (U of C, Northwestern, Rush in Chicago. Not sure which ones in the burbs) then I would get a 2nd opinion from one of those places. Many of us here can give you our BS name. 

Hi doxie

Hello Lago. Thanks for telling your story. It helps. I'm fairly new to all this--6 weeks out. I'm at Northshore--they are affiliated with University of Chicago. They have a good breast center. I was at Northwestern prior to moving to the northern burbs. I feel like I'm getting good care, but will get a 2nd opinion if needed. My BS was out of town, so her assoc called me a couple days ago with the path report from my surg last week. She thought MX was a good option, but the real discussion will be with my BS on Tuesday. Their surgical protocols allow for 1 more excision and if margins still unclear, go to MX. But going directly to MX is option also, under circumstances, as additional re-excision is no guarentee of clear margins. I also wonder about unrecognized additional pockets of DCIS, since it was not seen on any of the screening tools. My Oncotype is due back this week, too. Hoping for low. Thanks for your help.

Doxie, I still miss Hyde Park, but my daughter is in Skokie, so it was the draw. I wondered about your avatar--doxie dogs. Sorry about the disc disease.

My onc requested the BRCA test, and the aformentioned useless genetic counslelor at Rush never even called me back. When I called a second time she said my insurance wouldn't pay and didn't offer any assistance. I was dx'd at 51 with several cancer types/sites, I am adopted and therefore have no paternal medical history, and have a daughter. Armed with that, I would have thought a decent counselor would have at least made an attempt with the insurance co., but no. If I did my job as half-arsed as she does, I wouldn't have it for very long.

Where's the sun? Jackie-are you keeping down state?

Two hobbies, thanks for  the info and also for reading between the lines and understanding that probably for me, the issues is shifting gears from my initial info which was tiny, easy, early tumor that we would treat with lumpectomy, RADS, & aromatase inhibitors. Easy. Was that really just 6 weeks and two surgeries ago? to a much larger tumor, chemo, bad margins and MX now on the table, in a short time. I'm feeling like everyone has felt, I imagine--a snowball traveling downhill with no control over the direction. I know I'll feel better with more info. The PS consult had been suggested by my BS colleague, and it makes sense.  It's that out of control feeling I have to get settled down. One foot in front of the other. Thanks again. It helps.

Spunkyboobster--love that avatar. Wonder if anyone at Rush reads these boards. They should. That genetic counselor has gotten very clear customer service ratings here. Glad I'm not dealing with her. Hope you got the BRCA done. I could use a little sun too. It isn't in the Northern burbs, I know that. Literally and figuratively. 

Invisible, microsurgery means they are connecting very small blood vessels.  Some of the traditional flap surgeries move a muscle as the blood supply.  Microsurgery allows them to move fat and connect those small blood vessels.  That's the difference between a DIEP and Tram, for example.  Tram move abdonimal muscle, DIEP moves fat only.  But only some surgeons can dothe microsurgery. 

jemije, I felt like every time I got relative good news, they took it away. I started out thinking my tumor was smaller and only one.  Then it snowballed -.good way to express it.  Now a year later looking back, I feel I have a good prognosis.  It just took more work than I wanted. 

I saw sunshine when I took my dog out this morning, but it is gone now. Maybe it will come back.