Nothing holds back woman after double mastectomy

Kelly Rothe learned at age 18 she carries the BRCA?gene mutation and did what she had to do

By Dana Afana
The Ann Arbor News

ANN ARBOR, Mich. (AP) - It started off as a bilateral mastectomy. Then came the fertility treatments and egg freezing. Later, it was breast reconstruction, then finally, came the removal of fallopian tubes.

The past nine months have been an incredible and emotional journey for 21-year-old Kelly Rothe but now, she found that there is nothing holding her back after the crazy year she endured.

"I'm just seeing things from a different perspective now, so much good has come after surgery," Rothe told The Ann Arbor News. "I've made thousands of contacts with people, I made new friends, I have a closer relationship with my sister and my dad and my brother, I fell in love, I have just been riding the high from it for a while now and I constantly think, all right, well, what's going to happen when this high peaks."

She found out at age 18 that she carries the BRCA gene mutation. On May 9, at the age of 20 Rothe had surgery to remove both of her breasts to prevent the high risk of breast cancer. Her mother carried this gene and died of breast cancer so she wanted to take extra measures to maintain her health.

Rothe stayed in the hospital for one night and should have recovered after six to eight weeks but it only took three.

"I bounced back a lot quicker than many of the women that I've talked to and my age has something to do with that I think and where I was mentally going into the surgery, how prepared I was and the support system I had," Rothe said. "They say recovery is six to eight weeks and I was ready to go after three.

She then made a choice to undergo fertility treatments as a preventative measure for her future children.

"I ended up doing fertility treatments in July so I could freeze my eggs to do something that's called preimplantation genetic diagnosis so that they could make sure that my children don't have the gene," Rothe said.

According to Mayo Clinic in the realm of cancer treatments, oocyte cryopreservation, or egg freezing, is done to preserve the possibility of having children post-treatments, stating that certain cancer treatments may harm fertility.

Eggs are extracted from the ovaries, frozen unfertilized and stored for later use. Later, the eggs are thawed, fertilized, then combined with sperm in a petri dish and implanted in the uterus, according to Mayo Clinic. It also states that only a small portion of the implanted eggs may result in child birth.

Following her fertility treatment, Rothe had her breasts reconstructed in August then decided to remove her fallopian tubes in October because of the high chances of ovarian cancers starting in the tubes, according to The Oncology Report and the National Center for Biotechnology Information. She decided to do this as a preventative measure for her future children to not have to face the difficult decisions and surgeries she had.

Dr. Dana Zakalik, director of cancer genetics at Beaumont Health System in Royal Oak, said this procedure is said to reduce some of the risk of cancer since it is believed that in BRCA mutation carriers, cancer might start in the tubes.

"You're still leaving the ovaries in so there's still some risk, however, some gynecologists have suggested that you can remove the fallopian tubes and you can get rid of part of the risk," Zakalik said.

While she may not be able to physically conceive a child naturally, she has the option of in vitro fertilization.

"It's been a crazy year," Rothe said. "I still have that risk of ovarian cancer ... it's just getting rid of the disposable organs I can to try and prevent it."

Rothe has been to numerous conferences, giving speeches about her experience and encouraging people to donate money to cancer organizations. She said she spoke at Facing our Risk of Cancer Empowered (FORCE), the American Cancer Society and plans to speak at the Beaumont Breast Health center next summer.

Zakalik has been consistently involved in Rothe's genetic evaluation.

"My impression is that she's done really well and that she's overall made a good recovery," Zakalik said. "She's trying to move on with her life and has taken a very proactive approach and has kind of been the one making decisions for herself about what's right for her."

Given that Rothe is in her early 20s, Zakalik said she and her colleagues encouraged her to really contemplate her decision because the risk does not begin to rise until a person is in their 30s.

"We don't typically advocate women at such young ages to have these types of surgeries but Kelly was so determined and had done so much research into this and has the memory of her mother and what her mother went through," Zakalik said.

Zakalik said typically they try to discourage young people from doing surgery by counseling them of alternative measures they could take. She said these include: MRI screenings, exercising, maintaining a healthy weight, avoiding tobacco and all lifestyle interventions aimed at healthy living.

Rothe has received an abundant amount of support from her friends, family and current boyfriend Cody Ross whom she met two weeks after her surgery.

"My sister is my best friend, she was my primary caretaker after my surgery," Rothe said.

Her 18-year-old sister was tested for the gene mutation, which did not show up in the results. Rothe said it is harder to be the loved one than to be the patient.

"I don't think I could do it if the roles were reversed and I had to sit in the waiting room and wait," Rothe said.

After being with Cody, for a couple of months, Rothe said he would help give her fertility shots, along with her sister and roommate, because she felt nervous to inject herself.

"That's when I realized I loved him," Rothe said.

"What are boyfriends for," Ross said.

Cody described Kelly as passionate and empathetic and said she strives to do more with her life after talking to a lot of people in a similar situation as her and people who merely support the cause.

"She cares a ton about everything and everybody in her life from her rabbit to her family," Ross said. "It's become part of her life ... she is incredibly passionate about what she believes in and doesn't stray from that past."

Rothe is also part of a documentary called Pink & Blue which will be ready in early 2015. Alan Blassberg, who is based in California, directed the film. It explores the BRCA gene mutation and how it could put both men and women at risk of developing various cancers, according to Blassberg.

He thought to produce the film after losing family members from breast cancer, including his sister Sammy Blassberg. His sister Lisa was tested for the mutation and convinced him to do the same. The two tested positive and Lisa chose to undergo a double mastectomy while Alan decided to create this movie.

"I wanted to do something in the cancer realm to give back," Blassberg said. He suggests that people get tested and speak with a genetic counselor if they have the mutation and that it does not have to be scary.

Blassberg said he found Rothe's story about her mastectomy and connected with her via social media with interest of including her in the film. He said the film consists of six or seven other stores, though Kelly is the main focus.

"Kelly is such a strong spokesperson, it's almost as if she was meant to do what she does and be an advocate," Alan said. "She has a brilliant, beautiful soul, she's got a great spirit and is taking life one step at a time."

Regarding Rothe's story, the film goes as far as scenes following her up to the operating room.

"Everybody's cancer journey is different and everybody's past is different, it's all about their decisions," Alan said. "90 percent of people with BRCA mutation don't know they carry it."

Rothe said she met many people in a group called Young Previvors, which consists of people with the BRCA gene. She recommends that if people have the choice between surgery before getting cancer or waiting, she said to do it now.

"I just recently got in contact with a girl who is 23-years-old and diagnosed with stage three breast cancer," Rothe said. "That kind of put things in perspective and really reiterates that I did the right thing in this."

She has a quote tattooed on her back stating "to whom much is given, much is expected," by JFK which she said is her motto. She noticed this quote on the wall of the Detroit Red Wings locker room after meeting her favorite player Jimmy Howard, which Blassberg and producer Mikey Eckstein, founder of Embarco Entertainment, arranged.

"I've been given a lot more power than I thought I'd have after my story has gone public," Rothe said. "I want to make sure that I'm constantly putting out the correct proven information, I don't want to spread any false information."

After her surgery, she not only felt a closer connection with her loved ones but is given much positive attention to her experience.

"I'm still asked to give speeches, I'm still asked for interviews, it constantly blows my mind to hear how many people are interested to hear what I want to say, it's really humbling," Rothe said.

Kelly is studying special education and is hoping to teach for a couple of years. She then hopes to return to receive a PhD in autism spectrum to serve as a consultant and be a director of special education for a school district.

"It's interesting because now there's nothing really holding me back so my future seems even more real than it did before," Rothe said.

Published: Tue, Feb 10, 2015


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