6 month appt tomorrow: MRI, Mam, Ultrasounds. Questions?

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cinvee
cinvee Member Posts: 74
edited June 2014 in High Risk for Breast Cancer

Tomorrow is another 6 month check up.   I have changed to a University Breast Cancer Center and have had one appointment just to look over my case, this is my second at the Cancer Center.   Any suggestions on what to ask?  Where to go from here?  Should I just let it go and relax?  Is it really a big deal or am I freaking over nothing?  

Tomorrow I will have:  MRI, Mam, Ultrasounds. Bilateral, all.

Here is what we know now:  Extremely Dense Breasts.

Left Breast

ALH

FEA 

Multifocal ADH

DH

microcalcifications

Right Breast

ALH

FEA

DH

microcalcifications

My list of questions:

What is considered high risk? Is there a magic number?  What is it?

Is 42
young for all of this, and does it increase risk?  Knowing I have a lot of life still,  does this change anything?

Does
multifocal change anything? Does that mean large area?

Extremely
dense breasts? 95% Does that put me at much
higher risk because we could miss it in imaging?

Is 33%
risk high? How high before  PBMX surgery
suggestions?

What would
you do?

Aren't my reconstruction options WAY better if done before cancer?  (survivor friends only wish they had that option!!!)  They tell me to beg for prevention surgury.   

Isn't the best case scenario to NOT GET CANCER?  Why wait for it?  Am I crazy to just get rid of them?

MRI's have been easily approved so far,  will this continue?

Do they
understand the cost of the high risk surveillance?  (I have spent $18,000 in 2.5 years hitting max out of pocket each year.  Can't afford it!!!)  What if this goes on 10 years?  $6k/year x 10 years = $60,000.   Then cancer and a mastectomy?

Does the
number of biopsies that I have had make scar tissue that increases risk due to
poor visibility?

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  • farmerlucy
    farmerlucy Member Posts: 3,985
    edited April 2014

    Cinvee - It sounds like you have a really good handle on things. I know it is so onerous to do the high risk screening. You might also revisit the option of Tamoxifen with your doctor. FWIW I didn't have any trouble getting insurance to approve my PBM. Best of luck.

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  • cinvee
    cinvee Member Posts: 74
    edited April 2014

    Thanks for the response farmerlucy.   I have tried Tamoxifen, twice.   I am in the group with terrible side effects. :(  

    Also,  I will ask about BRCA testing.  (no family history, so would it be beneficial?)

    I do not think that PBMX will be so easily approved since I do not have cancer.  However, my BS mentioned that it may be approved by insurance since it will be cheaper in the long run for the insurance company.

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  • sarahjane7374
    sarahjane7374 Member Posts: 669
    edited April 2014

    Just FYI - my risk #'s were significantly below your 33%.  I don't know what is technically considered "high risk".  Multifocal means more than one area.  IMO, that does change things for you a bit, and extremely dense breasts is concerning due to the possibility something could hide in the dense tissue. 

    Everyone must decide for themselves what is the right course of action.  For what it's worth, my story:  I am 44, had multiple rapidly growing bilateral masses, asymmetrical breast enlargement (left at least 2x bigger than right), extremely dense breasts, sister dx at age 28, very limited known family history.  I had a PBMX in June 2013.  Insurance squawked a little at first, but my BS was able to get it approved with a peer to peer phone call.   I could have gone with the never ending screening, but I wanted my life back.  I had a really hard time with the constant rounds of testing, not knowing, etc.  I was given an option to end that, and I took it.  No regrets.

    Best of luck to you.  It's not an easy decision.

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  • cinvee
    cinvee Member Posts: 74
    edited April 2014

    Sarahjane,

    Interesting info.   Congrats on your decision, and I am so happy that all has turned out well for you.   You are so right, it is a very personal decision.  

    I thought the multifocal was an issue, but have never had someone "in charge" of my case.   

    One of my biggest frustration thus far is getting conflicting info from all of the Doctors.   One of the Drs at the University cancer centers thinks I should just go once a year and get all testing, MRI, mamm and ultrasounds.   ( I am doing it this time because I was having them all done at different facilities, from different doctors and different radiologists each and every time, a serious mess! )   You do not know what you do not know, so I thought this was normal, yet confusing for me.  

    I just feel so lost, confused and alone through it all.  At the same time,  I wonder if it really isn't a big deal and that's why none of the doctors have cared.  Am I crazy?  33% seems HIGH TO ME.   This number came from the University of Michigan Cancer Center doctors.   That seems reliable, no?

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  • sarahjane7374
    sarahjane7374 Member Posts: 669
    edited April 2014

    33% sounds high to me, too.  I think I was somewhere in the 18% ballpark - that came from my genetic counseling session.  Even that was too high for me - I'm a little risk-averse when it comes to my health I guess.  I don't know what the normal treatment is for ALH and ADH (which I think are the most significant things you listed up there), but it seems like if it is multi-focal (spread out) it would be more difficult to deal with. 

    Now that you are going to the University Breast Cancer Center, does that mean you will have more centralization in your care?  Like one doctor who you see regularly that refers you to others, or for imaging, tests, etc?  I can't imagine having to coordinate all that myself - I was like a deer in the headlights.  At least you are now going to have all your screenings done in one place.  That definitely seems preferable to going all over, having results sent back and forth, etc. 

    My decision was fairly easy for me.  It was something I had in the back of my mind for awhile anyway, so when my BS brought it up I thought about it for like all of 10 seconds.  I was never overly attached to my boobs - they weren't that great.  I don't miss them in the least.  I like the new ones I picked out. 

    You seem to have a good handle on your facts, you just need someone to coordinate things and interpret your results in a way that allows you to make decisions.  Hopefully you get that at this new place.

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  • luckymother
    luckymother Member Posts: 30
    edited April 2014

    Hi CINVEA,

    I was in a similar situation and chose double mastectomy, no family history, I just did not want to deal every 6 months check ups, tamoxifin so on. In my final biopsy they found ADH, ALH, atypical cells everywhere, tons of calcification. My insurance approved the surgery and reconstruction. I had a free tramp reconstruction.  I am very happy with my decision .

    Good luck to you,

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  • cinvee
    cinvee Member Posts: 74
    edited April 2014

    Thank you both!  It is so reassuring to hear from others in the same situation.   

    My MRI came back fine,  a few new things on the mamms,  but nothing urgent.  

    I am relieved, but I would be lying if I didn't say there is a very small part of me that would be ok with them finding something further along than ADH, ALH.  I know it sounds crazy, but I want the easy way out of this middle ground.  ( I am NOT saying the surgeries are easy!!!! and cancer is MUCH harder) but it seems my decision for the PBMX, the support of my Doctors,  the approval of insurance, the understanding of others in my life,  the "you have it or you don't" in the cancer category, etc.  would just be more, I don't know,  easy.  

    Cancer is a black and white issue. You have it or you dont. Risk factors are not, and that is a very tough place to live. How much is enough? I think I am at my edge and ready to move forward.  

    Here is a perfect example:  The nurse taking my blood preassure and vitals the other day asked what I was visiting the plastic surgeon for today.   I told her a consult for a preventative mastectomy.  She said, "oh, are you BRCA positive?"  me, No.   Nurse,  "oh, then strong family history, huh?"  Me, No.   Then she asked well then "Why?"  For the record, she wasn't being rude, just curious.   I explained I had several high risk conditions including ALH, ADH, and extremely dense breasts.   She looked confused, and that made me question why I was there.   

    This is what I am now calling "my not quite Pink" moments.   I do not have breast cancer thank God.  However,  I am not healthy either.   I hate this in between.   I am really happy that you all have had understanding team and BS.   Mine have acted like I want to amputate my head.   U of Michigan has been better and I see the SO next week to discuss the option of PBMX.   My MO thought I was crazy too until our 1 hour discussion about what I have been through since Oct 2012.   She then said she gets it.   Totally.    

    So tired, confused, and lost in the "not quite pink" area.  Thanks for your support.  It means a lot since you have been there, done that.   If yo udo not mind me asking,  I have Aetna insurance.  Did any of you that had your PBMX's approved?  

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  • sarahjane7374
    sarahjane7374 Member Posts: 669
    edited April 2014

    I have Blue Cross MA insurance.  They denied the initial request (naturally I got the notice on a Friday evening), but my BS was able to get the surgery approved with a phone call on Monday morning. 

    Well, I definitely can relate to your situation.  On one hand, good news that "nothing" has been found....on the other, it does make the decision more complicated.  I think you are on target, though, when you say that although the surgeries are not easy, cancer is much harder.  I did not tell very many people that I was having the surgery - only those with a need to know.  More people know now, well after the fact, because I am more comfortable discussing it now.  But those that knew in advance were supportive of my choice, and I am grateful for that. 

    Good luck next week with the surgeon.  I hope you are able to come to a decision that is right for you and that you are at peace with.  If I can answer any questions, please don't hesitate to ask.

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  • farmerlucy
    farmerlucy Member Posts: 3,985
    edited April 2014

    I had BCBS. The PBM for ALH and ADH plus a high risk family was approved with no trouble. Honestly insurance co would rather pay for that than something worse. I think the BS 's nurse did a great job writing it up. Also I'd seen a GC and had a 50% risk by a conservative model. 80 some percent by the Gail model.

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