Janet’s Story: An MSK Patient Speaks Out about LGBT Cancer Risk

By Matthew Tontonoz,

Tuesday, June 21, 2016

Lesbian breast cancer survivor Janet Weinberg
Summary

When LGBT activist Janet Weinberg was diagnosed with breast cancer, the experience made her realize the importance of screening mammograms.

As the former Chief Operations Officer at the Gay Men’s Health Crisis in New York City, Janet Weinberg is no stranger to the health challenges that lesbian, gay, bisexual, and transgender (LGBT) people face. But when she was diagnosed with breast cancer at the age of 57, she came to see that cancer was something of a blind spot in her community — many of her friends were not getting screened, and others avoided doctors altogether.

Here, she tells in her own words what receiving her cancer diagnosis was like, what challenges she faced as a lesbian undergoing treatment, and why she chose to speak out about her experience.

I went for a well mammogram on May 2, 2012, which didn’t go so well for me. The technician kept going back to the same spot. Finally, she called in the radiologist and I sort of knew that this was not good. The radiologist said, “We need to do a biopsy and find out for sure what’s going on.” I left there knowing that I had breast cancer — not because she had said it, but because I just knew.

The next day I was scheduled to have a meeting with the New York City Department of Health. The meeting was at 2:00 pm. At 1:58, my cellphone rang and I looked down and knew it was the radiologist. My question to myself was, Do I pick it up on a Friday afternoon knowing that she’s calling to tell me that I have cancer, or do I finish this meeting and call her back? Of course, I couldn’t wait. I picked up the phone and she gave me the news that I had cancer.

On Having Breast Cancer Treatment

My doctor at Memorial Sloan Kettering was Alexandra Heerdt. She was wonderful. She was very, very clear. She welcomed my spouse into the room for all of the explanations that needed to happen. She spoke to both of us. She answered questions from both of us. She covered everything that I think both of us felt like we needed to have covered.

I ended up going through both chemo and radiation. At some point during that process I picked up an infection in my breast that was not apparent until about a week or two after I was done with radiation. I ended up in the hospital for 18 days.

While I was in there, needless to say, Roz, my spouse, was with me regularly. The MSK staff did pretty well with it. But other patients and some volunteers did not. They would be talking to me about my “husband” or asking, “Are you married, what’s his name?” It was tiring and very frustrating. Coming out is a never-ending process.

Coming out is a never-ending process.
Janet Weinberg breast cancer survivor
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On Being a Screening Advocate

When I was diagnosed, I went on a one-woman crusade to make sure that every single person I knew was going for her mammogram. I can’t begin to tell you the stories I heard. From my friend who is a physician, I heard, “I’m too busy.” This physician happens to work in a hospital. I said to her, “Excuse me? Now tell me why you’re really not going.” Once we broke it down, she wasn’t going because she really didn’t like the experience. When we broke it down further, it wasn’t about the machine that’s very horrible; it was about the experience of exposing yourself.

I heard that story from a lot of LGBT people. They don’t go to regular doctor appointments. They don’t go for regular mammograms. It’s just an uncomfortable experience to come out to doctors every time.

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On the Need for Support

I have a friend whose spouse died of breast cancer at the age of 55. When she went to a support group and started talking about her female spouse, the women there had no idea how to incorporate her into the group. She went once and only once.

We never called it a support group, but that's exactly what it was.
Janet Weinberg

I know six women who were all diagnosed within two to three years of each other. The six of us had either dinner or brunch about every three months. We never called it a support group, but that’s exactly what it was. We formed our own support network because it was a more comfortable scenario.

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On Breaking Down Barriers

I honestly feel like I’m one of the luckiest people I know. I had a mammogram that picked up the cancer at stage II B. It was still an early-stage cancer. I got through the experience. I really, really want to see people get screened. I want hospitals to think about where there might be opportunities to improve their sensitivity toward LGBT people, to break down barriers that discourage people from taking care of their health.

I actually think MSK did better than most with regard to LGBT issues. But many people avoid seeing a doctor even before they’ve had a bad experience. It’s the fear of having a bad experience that keeps them away.

What it comes down to is this: Those at risk for cancer won’t benefit from early detection and treatment if they’re not getting screened. I want to help get people in the door.

Read more about how MSK scientists are addressing the specific needs of LGBT people at risk for cancer.

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Comments

Janet's story highlights the need for organizations like The National LGBT Cancer Project http://lgbtcancer.org The burden of "coming out" while dealing with cancer treatment is not to be underestimated.

Thank you Janet. Having had Cancer twice in my life, once as a teen and then as an Gay adult in my 40s, I have tried to use my earlier diagnosis as a talking point to my Lesbian sisters and Gay brothers aware of early diagnosis to save lives. It's not easy to get the message across. We have to try our best and work with the medical centers accross Metro NYC to reach the LGBT community.

Thank you, Janet. Just one more way you are a leader to us all.

Janet you continue to be an advocate in so many areas and an inspiration to all

Dear Janet,please email me some information about how i can become more informed about these issues . Thank you very much. Keep up your good work. Your concern for your fellow man obviously knows no boundaries..

Dear Jolette, thank you for your comment. To learn more about issues facing LGBT cancer patients and their families, you may want to check out the National LGBT Cancer Project at http://lgbtcancer.org/

Here are two other posts from MSK's blog that you may find informative as well:
https://www.mskcc.org/blog/women-average-risk-breast-should-start-scree…

https://www.mskcc.org/blog/out-front-scientists-and-activists-call-reco…

Best wishes to you.

Janet thank you for all the support you’ve given breast cancer survivors. I go to Sloan also as a stage 4 lung cancer survivor who is now cancer free married and gay with a son now 25. I went through so much not necessarily like you and the stigma of other women and their reasons for not going but MSK & Mercy Med Center accepted my spouse melinda and I completely. I never got the gender questions as she was right by my side even tho I still had my previous married name now I’ve taken her name. I had it all. Electrostatic radiation in nyc and in Commack LI where I live in Seaford LI then I had other things go wrong as I had awake brain surgery then more radiation after finding cancer in the edema in the brain. I was diagnosed 10/18/13 and everything I read gave me 5 yrs to live but now I continue on my journey. I had a clot in my lung and this was the dead of winter 2013-14 so you see the brain must be handled first before the cancer up in my lymph nodes. I continue to be monitored by MSK by my oncologist whose amazed by me because I had a staph infection that nearly killed me April 28 2015-June 28-15 then went to rehab for almost 2 months at Meadowbrook in Freeport LI. Lots more to my story as you can imagine but I do commend you for helping so many other woman get screened. All cancers must be addressed and mine started as I had a cold & cough for a month till I saw a Pulmonologist Dr Gordon in Bethpage. He’s was affiliated with Winthrop hospital and 9 days later he came back with the diagnosis of cancer but it was MSK & Dr Rizvi who found an ALK gene so I was on pills. Now no more cancer meds but other meds of course. Keep up the fight we all need as much encouragement as we can to seek out the help we need in this community. My dr Ng says he plans on writing me up in a Med journal one day and hope he does to help others.
Peace and love ❤️Lea

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