Do you see an oncologist?

momoschki · October 2015

After a dx of ADH nearly 5 years ago, I saw an oncologist every six months. He did loads of blood tests, advised me on supplements, and wrote me an Rx for Evista, which I continue to take.

Last month I was shocked to learn that he had died. Even more disturbing and shocking was the fact that it was deemed a suicide. His office declined to recommend anyone else.

So-- I'm wondering now just how essential it is to replace him. I still see my breast surgeon 2x a year for imaging and an exam. My internist could write the Evista RX and do blood work.

How many of you who've been diagnosed with either ADH or ALH regularly are followed by an oncologist? Just curious what others' experience is...

Djabi53 · October 2015

Hi - I am so sorry to hear about your oncologist. I would be shocked too and unsettled. I wouldn't know what to think if his office couldn't recommend someone for me to see. I do not have cancer but I have an oncologist. I am brca- but considered high risk because of family history. I have bilateral faint calcifications. Biopsy on one breast was benign - fibrocystic changes only. Other breast did not require biopsy. I am being monitored every 6 months for 2 years - told that this monitoring is protocol. My GYN referred me to a high risk breast cancer program for genetic counseling and testing and that is how I ended up with an oncologist. Even though my genetic testing was negative, my family history qualifies me to stay in the clinic for extra monitoring and care. I am about to start Evista which will be prescribed by my oncologist. Given family history, I'm okay with staying in the high risk clinic and having an oncologist. Would love to know how other women feel about this.

Ddw79 · October 2015

Djabi53

I am also BRCA 1- with strong family hx. I just did further genetic testing of all 19 mutations through Color Genomics. My cost was 260$ with shipping. I was negative for all 19 mutations . I have ADH and I wanted to make sure that there are no other genes involved. Not necessary to do this testing through an Oncologist. It's all done online. My Oncologist approved. It might give you some peace of mind to have the full suite of mutations for BC studied. It's very easy. Just spit and ship. Takes about two months to turn aroun

momoschki · October 2015

Thanks for your responses... no one has ever suggested genetic testing to me. I have no family history. Breast surgeon who follows me every six months does so as part of a high risk program at a major hospital. I'm seeing her in a couple of weeks and will ask her about the MO question, but was just wondering how others in s similar situation deal with this issue.

MelissaDallas · October 2015

I was only referred to an MO to discuss antihormonals. He didn't want to put me on tamoxifen or Evista because I had prior PE. This was right before the recommendation came out for AIs for prevention. It has been suggested but I haven't decided. I assume if I began taking Aromasin I would be followed by one, but like you, don't see why your GP couldn't prescribe it

Ddw79 · October 2015

I first had genetic testing in 1992 in a study setting before anyone even knew about genetic testing. But I did this then because I knew that all of the female cancers in my family could in no way be random . Testing proved me correct. My family was one of the first to be identified with BRCA 1 gene. That is why I did it. Tested again recently due to ADH. Now everyone can be tested due to Color Genomics algorithm and comprtive price . I saw no reason not to retest . At this point since you don't need a recommendation from an MO to do this panel, it's basically up to each one of us to decide if she wants to do this .its all done online and reviewed by doc and Geneticist throug

Color. Gave me some slight peace of mind to know that my situation is not caused by a faulty mutation. At least none of the 20 or so currently isolated

Do you see an oncologist?

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