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Woman says preventative double mastectomy made her feel ‘strong and brave’

A woman who underwent a preventative double mastectomy in a bid to avoid breast cancer after watching her grandmother and mother battle the deadly disease has spoken out about the relief she felt after the surgery.      

For Bess Jones, 34, from Ohio, breast cancer has been an unwelcome presence in her life since she was a young girl. Her grandmother, Sally, sadly passed away from the illness when Bess was six years old, and her mother, Ronda, fought and beat breast cancer when Bess was 12. 

Having spent her life under the shadow of the disease, Bess always felt that it would be a matter of time before she too was diagnosed – so she made sure to regularly check herself for lumps, eventually coming across one in September 2019. 

Fighting fit: A woman has opened up about her decision to undergo a preventative double mastectomy at age 33 after suffering two breast cancer scares in a matter of months 

Brave: Bess Jones, now 34, from Ohio, watched her mother battle and beat breast cancer when she was just 12 - and six years earlier her grandmother died from the disease

Brave: Bess Jones, now 34, from Ohio, watched her mother battle and beat breast cancer when she was just 12 - and six years earlier her grandmother died from the disease

Brave: Bess Jones, now 34, from Ohio, watched her mother battle and beat breast cancer when she was just 12 – and six years earlier her grandmother died from the disease 

Bess immediately went to get the right breast lump checked out, and after a mammogram and ultrasound, she was informed that it was just dense breast tissue, and was thankfully given the all-clear.    

But her relief was short-lived. 

Months later, at the start of 2020, Bess found another lump in the same breast – and this time was referred to a surgeon to have it removed. She underwent a lumpectomy in March, and was fortunately informed that the lump was benign.  

After both of Bess’ breast cancer scares, she was reminded by doctors again of her family history and was told that she was at high risk of one day developing breast cancer.  

What is the BLM gene mutation? 

The BLM gene mutation is a genetic mutation that can cause a condition known as Bloom syndrome – a rare disorder that is characterized by premature aging – and a predisposition to multiple cancers, including breast and colon.

Far less is known about BLM gene mutations than other mutations like BRCA1 and BRCA2, which are known to severely increase the risk of breast cancer.  

She was determined to free herself from the fear of breast cancer, and decided to take serious action in order to protect her health moving forward.      

Bess decided she didn’t want to be known as the woman who beat breast cancer, she wanted to be the woman who never gave cancer a chance. With the support of her partner Matt, Bess was referred to have genetic testing done.

She found out she has the BLM gene mutation which puts her at higher risk of breast cancer and raises her risk of colon cancer. Combined with Bess’ history, this gene mutation would raise her chances of developing breast cancer to between 57 and 84 per cent.

After hearing this news, Bess made the tough decision to undergo a double mastectomy on September 21, 2020; doctors removed the entirety of both breasts during the six-hour procedure, including the breast tissue, areola, and nipple. 

‘It was any easy decision to have a preventative mastectomy,’ said Bess. ‘I did not hesitate. I was 33 years old. I had a chance to be proactive. Then when I found out about my gene mutation, I was ready.

‘I had a chance to beat breast cancer before it had a chance to get to me. I was tired of the stress and anxiety of finding lumps, running diagnostics, waiting for test results, then surgeries for biopsies, and then waiting for those test results.

‘I knew a prophylactic bilateral mastectomy was what I wanted to do and what I needed to do.

‘I made the decision to have a prophylactic total bilateral mastectomy with reconstruction with implants. I was actually excited to get to my surgery date because I knew when I woke up I could say goodbye to my high risk for breast cancer and it would be less than five per cent when I woke up.’ 

Following the surgery, her risk of breast cancer was reduced to just five per cent – and testing of the tissue that was removed showed no signs of the disease, much to Bess’ relief.    

Taking action: In 2019, Bess (pictured before her mastectomy) found a lump in her right breast - which turned out to be dense tissue - and she found a second just a few months later

Taking action: In 2019, Bess (pictured before her mastectomy) found a lump in her right breast – which turned out to be dense tissue – and she found a second just a few months later 

Determined: Bess' second lump was revealed to be benign, but genetic testing showed that she had the BLM gene, putting her at high risk of cancer (pictured after her mastectomy)

Determined: Bess’ second lump was revealed to be benign, but genetic testing showed that she had the BLM gene, putting her at high risk of cancer (pictured after her mastectomy) 

Speedy: After the test results, Bess wasted no time in undergoing a double mastectomy - and she is now in the process of reconstructing her boobs with implants (pictured)

Speedy: After the test results, Bess wasted no time in undergoing a double mastectomy - and she is now in the process of reconstructing her boobs with implants (pictured)

Speedy: After the test results, Bess wasted no time in undergoing a double mastectomy – and she is now in the process of reconstructing her boobs with implants (pictured)

Recovery from surgery was sometimes difficult and Bess had to rely on Matt to help her with basic tasks in the early weeks. She has had to deal with the numbness and sensations of tingling and itching in her chest area throughout her recovery. 

Bess is currently going through the process for her breast reconstruction, but she is proud of the scars that she has been left with and says that they are beautiful. Bess is not sad that she lost her breasts, but sometimes finds it hard to describe how she feels about the loss.

Despite this, Bess shares her inspirational journey on Instagram to inspire other men and women – she has no regrets over her decision to have a double mastectomy. 

‘When I woke up from surgery, I remember thinking I did it. I felt relief. Just like any major surgery, the first few weeks were difficult and presented plenty of challenges. I could not have made it through my recovery without my amazing partner Matt,’ she said.

‘I could not use my arms or upper body at all. I was completely helpless. I could not lift, push, pull, use my arms in any way. With the surgery, they cut major muscles in your chest including your pectoral muscle.

‘I had four Jackson Pratt drains in place to help remove fluid from the surgery area to help prevent infection that needed to be emptied a couple times a day for three weeks.

‘Something that felt weird at first was my “foobs” are completely numb. I feel nothing. I have got used to it but it has taken a while. It took several weeks to be able to gradually work up to doing small things.

‘I learnt to be okay with my body healing in its own time, not in the time I wanted it to. There are a lot of feelings that happen in this journey and it is going to be very different for everyone.

‘It is hard to explain the sensations coming back or the lack of, my completely numb chest and yet where I have feeling it just hurts, the tingling/numbness in my arms/hands, annoying itching that I can’t scratch because it’s numb, the sharp pains from nerves regenerating.

‘I’m just trying to get used to my new “normal”. I still must have another surgery this summer 2021 to have my final implants placed and it will take about a year to fully heal.

‘What I am feeling and experiencing is all part of this journey. It isn’t all sprinkles and glitter. It isn’t all going to be good days, there are going to be emotional ones.

‘It is hard but it doesn’t mean this wasn’t worth it. I was blessed to be able to choose to have a risk-reducing surgery and I will never regret that decision. I never have and never will.’

Painful: While Bess (whose breast drains are pictured) says she has 'no regrets' about her surgery - describing her main emotion as 'relief' - she admits the recovery process was painful

Painful: While Bess (whose breast drains are pictured) says she has ‘no regrets’ about her surgery – describing her main emotion as ‘relief’ – she admits the recovery process was painful

Pain: 'I could not use my arms or upper body at all. I was completely helpless. I could not lift, push, pull, use my arms in any way,' Bess says of the recovery process

Pain: ‘I could not use my arms or upper body at all. I was completely helpless. I could not lift, push, pull, use my arms in any way,’ Bess says of the recovery process 

Support: Bess credits her partner Matt with helping her through the recovery process, revealing that she 'could not have done it' without him

Support: Bess credits her partner Matt with helping her through the recovery process, revealing that she ‘could not have done it’ without him 

Bess is currently in the process of having her breasts reconstructed and in June 2021 she will have exchange surgery to have her silicone implants fitted – she’s been sharing her full journey on Instagram to help others.

‘When I started on my journey I felt a little lost,’ she said.

‘I knew I had a genetic mutation that increased my risk for breast cancer. I went to Instagram and found groups of women who were going through or had gone through what I was. I was encouraged by so many of the stories.

‘That is then I found the term “previvor” it describes a person who is a survivor of a predisposition to cancer [genetic mutation], meaning they have a higher risk for developing a specific type(s) of cancer, but have not been diagnosed. It really helped me to find a term I could relate to.

Inspiration: She is now urging others to take action to protect their health, warning that 'cancer doesn't care about age, it doesn't care if you have plans'

Inspiration: She is now urging others to take action to protect their health, warning that ‘cancer doesn’t care about age, it doesn’t care if you have plans’

‘I realized I wanted to share my journey and how important it was to me to try to help others through my story. Everyone’s journey is different and every person is too. It was important to me to be real in my posts but I wanted my posts to have a perspective that I was striving for in my own personal life.

‘I wanted my posts to be real but encouraging, raw but uplifting, true but empowering.

‘Being a previvor means I was able to beat breast cancer before it got to me. Being a previvor gave me strength and bravery I didn’t know I had. Being a previvor means I have a genetic mutation. A genetic mutation that still and will always affect my life.

‘I had been thinking about sharing pictures of my scars for a while. I feel it is the fear of the unknown that scares so many. It is what scared me for so long about cancer and mastectomies so I decided I wanted to share.

‘For me, my scars don’t bother me. To me they are a part of my story, a part of me, and a part of what makes me the woman I am today. To me they are beautiful in their own way. There should be no body shaming – this is not a beautiful process and this is not a boob job.

‘This is a journey. I do not feel sad that I lost my boobs. I have absolutely no regrets. Scars are there to remind me of who I am and what I fought for.’

Finally, Bess shared her words of advice to others.

‘Be proactive, empowered, brave and strong with your health,’ said Bess. ‘You are your own best advocate for your health. No one else. You.

‘Cancer doesn’t care about age, it doesn’t care if you have plans, it doesn’t care if it isn’t a good time. Cancer isn’t going to wait so why should you. I made a promise to myself to be proactive at a very young age and I am glad I did.’


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