I have had a piece of my body taken from me

October 3, 2018

GREENSBURG – Local Rotary Club President and Girls Inc. Director Mandy Lohrum is in the final reconstructive stages of having her breasts voluntarily removed.

 

After finding out she was a carrier of a gene linked to breast cancer, Lohrum made the difficult decision to diminish the likelihood of ever facing it herself.

All in the Genes

The short segments of DNA found in any organic cell contain the instructions for building the proteins that control the growth of cells in that body. Abnormalities in DNA are like typographical errors that lead to faulty cell growth and function. If there is an “error” in a gene, that error will reappear in all the cells created from that gene.

It’s very much like an instruction manual in which all the copies have that same ‘typo.’

Through recent research, scientists have learned that many inherited forms of breast cancer are associated with three types of abnormal genes: BRCA1, BRCA2 and the PALB2 gene. This gene has been found to increase cancer chances sometimes 5 to 9 times greater than the BRCA-1 and -2 genes.

According to the New England Journal of Medicine, researchers from 14 labs in eight countries found that 362 family members from 154 families who had an abnormal PALB2 gene, but didn’t have an abnormal BRCA1 or BRCA2 gene, developed cancer.

The report also states that of 311 women with an abnormal PALB2 gene; 229 of these women had developed breast cancer, and that of 51 men with an abnormal PALB2 gene; seven of these men developed it as well.

The researchers compared the risk of the people in the study to average breast cancer risk, and found that “overall, women with an abnormal PALB2 gene had a risk of breast cancer that was 9.47 times higher than the average.”

Lohrum, a mother of two small children, wife of a successful business-owner and successful in business herself, learned that she carried that gene.

Heredity plays a large part

”I lost my mother to skin cancer when I was 20. She was 40 then. And cancer is prevalent in my mother’s side of my family,” Lohrum said. “Something else was at play in this, too. From the time my mother was diagnosed to the time she died was exactly seven weeks, and when you are at risk because of your heredity you have to be checked every six months. With two small children and the busy lives we lead, I didn’t need that, and my husband was behind me 100 percent.”

While attending a “Women in Business” conference hosted by the Decatur County Chamber of Commerce in 2015, Lohrum learned of the possibility of doing genetic testing to predict the probability of cancer. Being affordable, and quickly becoming the leading edge of the fight against cancer, Lohrum was intrigued.

“I stored it in the back of my mind,” she said.

In October 2017, a cousin on her mother’s side returned from duty overseas with a cancerous tumor in his brain that had to be removed. After genetic testing, he learned that he possessed an abnormal set of genes.

And then, Lohrum’s uncle on her mother’s side died of bone cancer.

“At that point, I knew I really needed to have this done. So I asked my doctor for a referral, and I was recommended to Emily McNulty in the Decatur County Memorial Hospital’s new cancer wing,” Lohrum said.

After filling out the required questionnaire and getting the insurance OK, Lohrum went through with the testing.

However, Dr. McNulty made a strange request of her upon finishing the paperwork. “You have to promise to come back to me and let me read the results to you,” McNulty said.

Dr. McNulty explained to her that 75 to 80 percent of people don’t ever want to know the results, and don’t come back in to have them read.

“People are that afraid to know, but I wasn’t,” Lohrum said.

The Results

“Dr. McNulty told me that there was good news and that there was bad news,” Lohrum said. “The good news is that you don’t have the melanoma gene.”

Expecting to hear that she might be following in her mother’s footsteps, she was relieved.

The bad news was that she did have the defective PALB2 gene, and that her chances of developing breast cancer were 54 percent greater than the average woman.

“So, I learned that I didn’t have a greater chance of developing melanoma than any average, pasty white woman,” she said, laughing. “But I was very seriously in danger of developing breast cancer.”

Micah’s support

McNulty was referred to a breast surgeon and a genetic counselor who presented her with the options of carrying on as usual, having to get a mammogram and a thorough exam every six months, or she could simply do preventive surgery and have all breast tissue removed.

After much internal debate and ample research on her own, she discussed it with her husband, Micah.

“We make all decisions about my husband’s business together because my background is in finance. It’s just what we do,” she said. “Micah went with me that day to hear the results, but when he heard them, he said to me, ‘I’m sure your mind is already made up, so I support you completely in your decision. Let’s do it.’ We were very lucky that our insurance was willing to cover a reconstruction, because I really wanted to look like I did before. That was important to me.”

Mandy confesses that she likes to know all about a topic when making a decision.

“The thing about this process is that with every move there are so many options of what the next move should be. There’s a lot of decision making. And the plastic surgeon I saw for this (Dr. Jason Cassiopo of Community Health in Indianapolis) was recommended as the best. He seemed a little cocky, but he just laid it all out for me,” she said.

Reconstruction

“So, usually, when it’s found that someone has breast cancer, they have to go in and remove all of it, cancerous and non. Sometimes the cancer will affect the skin, so that has to be taken, too,” she said
The success of reconstructing a breast is due to many factors, but skill, and the availability of healthy skin surrounding the site, can make or break the process.

“I was very lucky that I didn’t have to have a radical mastectomy,” Lohrum continued.

A radical mastectomy is removal of all breast tissue, all lymph nodes and any other adjacent tissues that are cancerous or pre-cancerous. With the dramatic loss of tissue at the site, successful reconstruction is often challenging. Lohrum was pleased that she had made the decision long before it became an emergency.

“I was able to make many decisions concerning the process because it wasn’t an emergency. So I’m looking forward to looking just like I did before, and not having to worry too much about having breast cancer in the future,” she said.

As pre-elected breast removal and the beginning phases of reconstruction happen in the same surgery; two surgeons “tag-team” a single surgical event. One will remove the necessary breast tissue on one side, and then move to the other side, at which point the plastic surgeon will begin insertion of expanders. These are devices used to preserve the available healthy skin tissue during the healing process, and then stretch it to accommodate the appropriate sized implants.

There are two types of reconstruction.

A “DIEP Flap” (an acronym) involves taking living fatty and circulatory tissue from the belly below the site and inserting it in place of the recently-removed breast tissue. In essence, they perform a “tummy tuck” in the process. Lohrum considered this option, but because of the extended length of time it takes for such surgery to heal, she elected to have implants.

The trauma

Lohrum said the process, even though it wasn’t an emergency, is still emotionally trying.

“Even though I’ve done a great thing for my future, and the future of my family, I have had a piece of my body taken from me, and that’s a very emotional thing. I think it is for anyone,” she said. “And they want you to make sure that you aren’t planning on more children, because they want you to have the option of breast-feeding those children. If they take that breast tissue too early, something that bonds you so closely to your newborn children is gone forever. So, it’s the finality that is a little emotional as well, but I know that losing my life and endangering my family would be the worst thing of all, so I’ll take it.”

What does she recommend for those who face the uncertainty she did?

“Ask lots of questions and research everything. I’m a person who wants to know all about it. I want to how the process works,” Lohrum explains. “But you’ve got to remember, yes, it’s expensive, and yes, it’s emotionally tough. But think about the cost of chemotherapy and radiation treatments. And then, how expensive funerals are now, and what your children will miss without you there through their lives.”

Lohrum finished by saying, “Taking control of your life just seems to me to be the least expensive route.”


Greensburg Daily News

Contact Bill Rethlake at 812-663-3111, ext. 7011 or email bill.rethlake@greensburgdailynews.com.