Do I have cancer-phobia?

Hi Mary,

I'm not clear about your "No brac" statement.  Do you mean that you've had genetic counselling and testing, and that you don't have a mutated gene? or that you haven't had testing?  If you haven't had testing, I'd encourage you to meet with a certified genetic counsellor and possibly (based on your consultation) have testing.  

As a part of preparing for your meeting, you'll be asked to collect family medical history information.  Based on that information, your own medical history and any testing the suggest, they should be able to calculate your personal risk of breast cancer.  

If you were tested (or get tested) and have an increased risk for cancer, you might find the website www.facingourrisk.org helpful. It's a website for those who are facing a hereditary cancer risk. Some women who have a significant risk of BC do have PBMX, but some also choose to take drugs like tamoxifen. 

If you've been tested and were negative, did you get a personal risk assessment?  If not, I'd check into that.  There are a number of "calculators" on the web, but I don't have an opinion on any of them.

Finally, not crazy, just scared.  And watching your Mother, no wonder.  However once you have your risk defined, then discuss (with the genetic counsellor) how to manage your fear.  It sounds as if you may have done this if you're having annual MRIs? But perhaps there are other things that they will want to suggest...ultrasounds are frequently combined with mammography when breasts are dense.  And in fact the radiologist who screened me for years (and spotted what turned out to be DCIS) routinely used ultrasound on me because my breasts were dense.  Some women who are calculated to be high risk take tamoxifen as a preventative agent.

As I said, I don't think you're crazy, but I do think that you need to analyze the risk that you face, then plan how you'll deal with it.  Work with your medical team to determine what a prudent, vigilent person like yourself should do to ID anything that might need attention, then work that plan.   A PBMX is not the place to start (although I can't say you might not end up there, depending on your genetic counselling, etc.).  

BTW, you'll need medical support that a PBMX is the appropriate way to handle your risk if you want an insurance company to cover costs associated with it and the reconstruction/sequelae (if any).  So working through an analysis of your risk and the potential ways to manage it are things you'll want to do, even if what you really want is a PBMX. 

Hi, I am sort of like you and my name is Mary too!  My mom died of bc and her two aunts above her got it also.  One died before I was born.  I had negative BRCA tests.

Like you I spent quite a long time really scared of my breasts.  Everything I read gave me  new risk factors.  When faced with the abnormal biopsy I did have a BMX.  This was not a hard decision for me!  I had spent 3-4 years being increasingly disturbed by the changes I could feel in my breasts and it really caused anxiety.  I do understand your concerns and know it is a bad place to be.

The only good thing is that we have today great technology.  If you keep up your surveillance and maybe get MRI also, you will most likely catch anything before it is very advanced.  Good wishes to  you for a cancer free life!

Mary - I know how you feel.  When my mom was diagnoised at age 60 (I was 30 - 20 years ago) - I went to her surgeon and said I wanted mine off!!  He thought that was ridiculous...so 20 years later, 5 biopsies, many call backs on mammograms - my laatest biopsy came back ALH.  My choice was to take Tamoxifen or have PBMX - my new surgeon was totally supportive - I had the surgery - wasn't too bad, and I was able to have nipple sparing.  That was May 2010 - I feel great and have been totally happy with the results.  My risk went from 40% (negative for BRCA, but strong family history) to less than 5%.  I still need to do breast exams and see the surgeon once a year - because like has been said before there is that small chance there could be something - but my surgeon assured me that it would be felt very early.  Let me know if you have any questions - there aren't too many ladies that have had PBMX who are negative for gene and don't have cancer.  (My mom is doing well 22 years after diagnosis - she is now 83!!)

Hugs, Valerie

I had a DMX last month with 1 positive node. I've never been a hypochrondriac or especially concerned about health issues but now whenever I feel a pain anywhere, be it a headache, stiff neck, etc., my mind immediately goes to cancer.

Since I am refusing chemo, I guess I'll just have to live with that fear for whatever years I have left on this earth.

Mary,

There's nothing good about 40,000 people dying from BC in the US every year, but to say it's "virtually unchanged for the last 40 years," is a bit simplistic.  Keep in mind that the US population has increased by approximately 80 million over that same 40 years (226.5 million in 1980 and 308.7 million in 2010).  If nothing had truly changed, that 40,000 number should have increased proportionately over the same period and we would be talking about over 54,000 deaths.

While the demographics suggest that something positive has happened over the last 40 years, it's clear lots more is needed.  I don't know much about the National Breast Cancer Coalition, but I love their website: The Breast Cancer Deadline 2020 which has really good information, as well as calls to action.

In the meantime, how was your appointment with your genetic counselor?  Have you made any progress in putting together a personal risk assessment and a plan for managing that risk (whatever it is)?

LisaAlissa 

I was 30 when my mom got breast cancer. I went to her surgeon and said I wanted mine off. He said that was ridiculous, but had me have mammograms every year. Well, several biopsies, calcifications etc. Fast forward 20 years my last biopsy came back ALH , precancerous. New surgeon by this time and she agreed it was time for mastectomies. And I was able to have nipple sparing. So if gosh are watched closely hopefully any changes will be caught early and you can make a decision then. Good luck.



Hugs, Valerie