High Risk.. and scared

kdenkers · May 2014

Hi,

My name is Kris. This is started for me last year, where I went in for my yearly mammogram and they had found some questionable things in my right breast. Several ultra sounds/MRI and biopsy done, they had said it was nothing. But the thought is still there at that point of what if they are wrong? A year went by, and I went in for my mammogram back in March of this year. Now they found cysts in my left breast this time. They did not say anything about the right this year, which I thought was odd. They wanted to do the ultra sound, which they did and they wanted to do the hormone test and gene test. My father and my brother both had double mastectomies, so it runs in the family. The gene test came back negative, but the hormone test came back highly elevated. My ob said I had a 50% chance of developing cancer within 5 years. I let that settle in, its high yes, but it could have been higher. I had questions for her about preventive measures and she kindly referred me to a specialist. That appointment was yesterday. He told me that 50% was totally off, that my test results were more like 60-80% of developing cancer. So this had me very concerned at this point and I spent the entire drive back to work trying not to cry over it. He explained that I had 3 options, wait and monitor.. meaning MRI and mammogram yearly, but staggered so I was going looked at every 6 months, the drug tamoxifen or to do the most aggressive measure and have them taken.

I have spent days reading up on the drug aspect.. there are good things about it, but then there are some not so good things that can result from it. My issues are the following: 1: I am young, if I have a high risk of developing cancer down the line, take my breasts.. id rather deal with that now, when I am young and able to rather when I am older, not as healthy and the cancer could have potentially spread other places. 2: I do not want to go in for 1 thing, take the drug and be treated for 10 new things that have come along. Of course I am just putting 10 as a figure out there, but I don't like taking drugs, and I don't want to have to go in for cancer and come out with cancer somewhere else, on antidepressants, or any other things that have the 50 50 chance of actually happening. I do realize that everyone responds to every treatment differently, and that nothing is a sure thing either.

What do you all think? I need some honest and down to earth opinions here. I did make an appointment for a second opinion at the woman's hospital in Boston so I can ask my questions that I now have and be able to see what I can do to move on. But at the same point, I am scared, I'm left asking why, and I am left asking what are my best treatments here, what is the best way to proceed. My dad and brother tell me to do what is best for me, which I understand. but I don't know what that is. Any insight would be very helpful.

Thank you,

Kris

Moderators · May 2014

Kris, Welcome to BreastCancer.org. We are so sorry that you are dealing with this difficult situation. Our members are knowledgeable and supportive and strive to help others feel less alone with what they are going through. While you wait for some responses here you might also want to check out this page important links for those at high risk that offers additional pages of information. Good Luck with your second opinion and keep us posted. The Mods

sarahjane7374 · May 2014

Hey Kris,

So this specialist you saw - was it a genetic counselor?

You mentioned you have made an appointment for a second opinion at a Boston hospital. Seeing as we are apparently in the same general geographic area, could I recommend Women & Infants Breast Health Center in Providence? It's where I went - they are amazing there. They offer complete care - genetic counseling, doctors, etc. And the actual hospital is right down the street, within walking distance or a 1 minute drive. They have a fantastic diagnostic imaging department, all new technology, including MRI services which are open 24 hours on a couple days a week, so getting an appointment is super easy and quick.

I went through the genetic counseling, and it was very informative and helped me put things in perspective and evaluate my options. Ultimately, I went with surgery, but there's a lot of options in between.

If you are interested, PM me and I'll send you names of my surgeon and genetic counselor. Highly recommend both, without any reservations.

Best of luck to you

kdenkers · May 2014

Hey,

The doctor that did the genetic test was just my OB.. she then referred me to a breast surgeon to talk with.

I am kind of in your area, I am actually from Albany, NY.. but I am willing to see even a third person to help me in my decisions of what I should/could and would be doing. I will send you a PM Thanks for your help!

Kris

kdenkers · May 2014

Thank you again for the warm welcome and the link for more information! I will read through it tonight when I get home from work.

Kris

DiveCat · May 2014

Have your father and brother done genetic testing?

I do think before you do anything, YOU need to see a genetics expert. Your OB and breast surgeon are most likely not genetics experts and should not be giving you risk assessments. I am very alarmed your OB gave you a 50% in 5 years, for example, based on a negative genetic test and a hormone test (of what kind?). Not even BRCA+ women have those kind of odds in a 5 year span, and my first response is your OB is NOT qualified and is using scare tactics based on...what qualifications? It sounds like you might have fibrocystic breasts, as do a majority of pre-menopausal woman, but this does not make you high risk either.

I have not heard of a "hormone test" being used to give a breast cancer risk assessment. Especially as breast cancer is not "one disease" and may or may not be hormone-fueled. So again, I am concerned about who is giving you these risk assessments.

You may indeed be higher risk due to family history, but you may also not be. For example, if your brother and father carry a genetic mutation, which they well may if they have not been tested, and you do not, you are a true negative and at average population risk.

farmerlucy · May 2014

kdenkers - A genetic counselor is a great idea. That is a pretty high risk. I wonder what model they were using. Some are more reliable than others. My brother did BRCA research and he said that often times male breast cancer is due to a BRCA mutation. I would imagine that a GC would push for your Dad to be tested. If he turns out positive, and you are already a known negative that could be a very good thing. My DIL's mom is pos, but DIL is neg, so her risk now is that of the average woman.

I have not heard of a hormone test being used prediagnosis.

You are no doubt on the right track, and it sound like you have really good resources in your area. Best of luck, and please come back and let us know how things go.

farmerlucy · May 2014

Divecat - There we go - our great minds are thinking alike. Hope you're doing ok.

DiveCat · May 2014

farmerlucy, not only is it "high risk", they gave it to her as 5-year risk, not lifetime risk. Even BRCA+ women get lifetime risks of 40-85%, with risk broken down over lifetime but I have never seen one at 50% in 5 years. It raises questions.

Ktjay · May 2014

Hi Kris,

Sorry you are having to deal with this, it is all so scary. I wanted to put my 2 cents in. You have gotten some great advice, the women here are wonderful and know their stuff. I would suggest to you one more test before you make any decisions. I would suggest having an MRI done. Not all breast cancer is caught by mammograms or ultrasounds, especially in the early stage. If you have fibrocystic breasts and they are dense then an MRI can catch cancers at a really early stage, especially if it is an invasive lobular carcinoma (ILC.) I had genetic testing done because breast cancer runs high in my family, grandmother, 2 aunts, mother and sister. My sister had testing done and she had a variant mutation, a polymorphism in BRCA1. I had genetic testing done and I have the same mutation. According to the genetic testing I am at no higher risk than the normal woman. HOWEVER, that being said I got breast cancer. Science just does not recognize that variant yet, but one day they will. Unless your genetic testing proves you are BRCA+ or maybe have a variant, I would not jump to remove your breasts. You are young and don't have to fear breast cancer just be aware of the possibility and get checked regularly. Knowledge is power. You can have exams every year and you can have MRI's to help diagnose. I always knew my risk for breast cancer was high and I did not catch it as early as I would have liked, but I did not know about MRI. Now I have that knowledge and my girls will have that advantage. Listen to yourself and gather all your information before you make any decisions. Try not to make a decision out of fear, but out of power. Good luck to you.

MelissaDallas · May 2014

Ktjay, she said she's had MRIs.

Ktjay · May 2014

OMG you are right, I missed that, see chemo brain. I apologize, see that is why you ladies rock. Well then Kris you are doing everything you can to make your decisions.

High Risk.. and scared

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