MY MAM, ME & HEREDITARY BREAST CANCER

MY MAM, ME & HEREDITARY BREAST CANCER

Happy 70th mam

This past weekend should have been a weekend of celebration. The weekend when my mam should have been celebrating her 70th birthday. Except she lost her long battle to breast cancer back in 2000 at the devastatingly young age of 54.  I was robbed of my mam when I was 24 and my children and niece and nephew have never known their grandmother Jean.  She’s always on my mind, but never more so than this week on what would have been a landmark birthday celebration, which happens to coincide with October’s Breast Cancer Awareness month.

I’m not going to focus on the pain and guilt of losing my mum today. I don’t think I could possibly put it any better than this post by Jane at Maflingo, who’s experience of losing her uncle was oh-so-unnervingly similar to mine 16 years ago when I lost my mum. Instead, I hope this post will raise some awareness of genetic breast cancer and encourage anyone with a family history of the disease to look into genetic testing.

The hereditary breast cancer link

My mam had an inkling there was a hereditary link in our family 5 facts about genetic breast cancerwhen she discovered she had breast cancer after losing both her sister and aunts to the disease. Always interested in science, she pushed for genetic testing, still quite new at the time, and they discovered she had a faulty BRCA2 gene (the ugly sister of BRCA1, which you may know Angelina Jolie has). Of course, it was too late for my mum to do anything about it, but it did mean she was able to help the geneticists isolate our family gene that may have been passed onto me, my brother (which increases his risk of prostate cancer) and our cousins (we all have a 50/50 chance of inheriting the fault gene).

When I was 35, after putting my head in the sand for a number of years, I decided the time was right to do the genetic test myself. I prepared myself for the worst through genetic counselling, but it was still a shock when the blood test came back positive. This meant I had a much greater risk (around 85% lifetime risk) of developing breast cancer compared to the average woman (you can find out more on this at Breast Cancer Research UK).  Within a few weeks, I had a mammogram (which didn’t show up anything) and an MRI scan at St George’s hospital in Tooting. This latter scan, so important for younger women whose breast tissue is more dense, picked up a lump which led to a biopsy and the culprit being sent off for analysis. That was one long week, and I worried I’d put off the genetic testing too long and it was too late. But thankfully the results came back benign.  However, having originally thought this knowledge meant I’d simply have annual observational screenings, conversations quickly turned to a risk-reducing mastectomy and the various options available to me. I was in denial at first. I’d seen what my mother looked like after her mastectomy and it brought back so many difficult memories I wanted to leave buried. But as weeks turned to months and we were thinking of starting a family, I knew I had to act, both for my mam and for my future children. My mother had given me the gift of knowledge. Knowledge that I could do something to improve my odds and the chance to live the full life that she and my aunt didn’t.

Moving on with my life

In November 2012, I had a risk-reducing double mastectomy with reconstruction, using a strattice (like an inner bra made from medical pig’s skin) and implants. Making that decision was probably the hardest one of my life. After all, maybe I’d be in the 15% of faulty gene carriers who’d go on to live a happy, cancer-free life. But I knew I’d spend every year for the rest of my life wondering if and when it would come after me. In fact, I remember sitting in the pre-theatre waiting room, reading ‘Feel the Fear and Do it Anyway’ (I bet that freaked a lot of fellow patients out!) and realising I was doing this because I had to move on with life.  I still see my surgeon every year for check-ups, but my risk of breast cancer has now dropped to under 5%, which is lower than the general population (around 10%). Now that my family is complete, I also need to make the decision to remove my ovaries, and I’ll be meeting St George’s amazing team again to start those discussions later this year.

Make one person aware

If I can pass on anything via this post, it’s this. If you have multiple people in your family affected by breast and/or prostate cancer, ask your GP to refer you to a geneticist. Maybe it will rule you out of the high risk profile and maybe it won’t. Either way, knowledge is power. Whether you opt for annual screenings to keep things in check, or choose to go down the risk-reducing surgery route like me, that’s your personal choice. Most importantly, having the genetic test means you could save your entire family for generations to come.  ‘Make one person aware’ is the key message behind the National Hereditary Breast Cancer Helpline, where you can find more information on hereditary breast cancer.

Here’s to my mam on her 70th birthday

Last week, my niece and nephew baked a cake in memory of the grandmother they never knew, which was totally unexpected and totally had me in tears (they just don’t know it).  My mam was always one for a good party, so instead of focusing this post on how much I terribly miss her, I chose to celebrate during the #BloggersBeatingCancer virtual coffee morning last week with a slice of cake and a donation. If I can raise awareness of hereditary breast cancer and save one family from this awful disease, I know I’d have done my mam proud. Happy 70th birthday mam.

My mum's 70th birthday cake

 

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32 Comments

  1. February 8, 2017 / 10:07

    Awesome post, I am sorry to hear about your mum,. But Its really very important to aware other about cancer who have little chances for cancer about their health. this post sounds that you are very brave. Thanks for sharing this information with us.

  2. November 12, 2016 / 09:23

    What a great post. I’m so sorry you lost your mum I know how hard it can be. My sister is 51 and is stage IV (we are fighting very hard!)
    It’s so important to raise awareness and I think remembering your mum is a lovely way to do it. I can’t imagine how hard it must have been to have the mastectomy but I guess deep down you know it’s a must, particularly if you have children. You sound like a very brave person, much love xx

    #BloggerClubUK

    • topfivemum
      November 15, 2016 / 17:08

      Oh Siena, I’m so sorry to hear about your sister. It’s terrible to watch someone you love suffer like that. Sending you both lots of love and positivity. Stay strong! xx

  3. November 3, 2016 / 15:35

    Ruth thank you for sharing such a deeply personal story. Cancer affects so many people and touches so many lives and it is wonderful that you are using your own personal experience to offer advice to others who may be in a similar scenario. We have many incidents of bowel cancer in our family and genetic testing is a route we are now looking at. As you say knowledge is best. #bloggerclubuk

    • topfivemum
      November 4, 2016 / 15:57

      I’m sorry to hear your family has also been affected by cancer Jo. I hope the genetic testing throws a bit more light on it for you and your family. Thanks so much for your kind comments, Ruth xx

  4. October 7, 2016 / 22:05

    Wow what a story you have shared with us. I’m so sorry about your loss but thank you for being so honest about such a painful topic. It could do a lot of good for other women so thank you. #fortheloveofBLOG x
    A Mum Track Mind recently posted…My Darling Memory Round-Up Week 11My Profile

    • topfivemum
      October 9, 2016 / 16:09

      Thanks so much lovely. So many great things going on to raise awareness now it’s breast cancer awareness month. Happy to do my bit xx

  5. October 7, 2016 / 14:12

    Happy 70th Birthday to your mum. She sounds like a brave lady, and so are you for taking the steps needed to make sure you live a long and healthy life without fear.

    We have been through life with Cancer when my dad was diagnosed two years ago, thankfully after a year of intense treatment he is now Cancer free, but that fear never leaves you. I can’t even imagine what it would feel like if things went the other way and we lost him but I know your mum must be so proud that you have used the knowledge she gave you to make decisions which couldn’t have been easy to make.

    Thank you for sharing your story and putting together such an informative post x #KCACOLS
    Jaylan – Diapers at Dawn recently posted…Bedtime Stories: September 2016My Profile

    • October 7, 2016 / 15:47

      Hi Dawn, thanks so much for your kind words and I’m so glad to hear your dad’s treatment is now well behind him. It affects everyone in the family, doesn’t it, and I’m sure you’ve been a rock for him on the days he’s needed it xx

  6. October 6, 2016 / 20:53

    Wishing your mam a happy 70th too and am so sorry for what she had to undergo. You are a star and a brave woman to have taken this decision. Lots of love forum you and your family from India.

    • October 6, 2016 / 23:21

      Thanks so much for your kind words Tina. I’m not sure about the brace bit but we can all find strength when we need it xx

  7. October 6, 2016 / 19:50

    Knowledge really is power. What a brave post. I suspect you have made the right decision having a double mastectomy and since it was the right decision for you I guess that really is all that matters. Such a huge thing to do, I can’t even begin to imagine.
    #KCACOLS

    • October 6, 2016 / 23:19

      Thanks so much Kirsty! I must say, I’m new to this blogging lark but it’s already so rewarding for the community spirit and support. Thanks also for being my inspiring little Insta Mate!

  8. October 6, 2016 / 05:46

    Ruth,
    This is such a beautiful and honest piece. Something that not many of us have ever had to think about. Cancer is such an AWFUL disease, and I have watched it ravage the bodies of loved ones myself.
    I truly cannot even begin to try and understand the thought and weight that brought you to your decision to have the double mastectomy, but I am sure it is so much more freeing to be able to live your life free of fear. Thank you so much for sharing. And, Happy Birthday to your brave Mam <3 #KCACOLS

    • topfivemum
      October 20, 2016 / 22:09

      Thanks so much for your kind words Savannah. I’m sorry to hear that you’ve also had to witness the disease claiming your loved ones. The mastectomy was a tough decision, but I couldn’t think of anything harder than dealing with cancer and all the treatment that goes with it, so it feels minor in comparison.

  9. October 4, 2016 / 21:29

    You are so brave, this is a great post to get people thinking. It has made me well up! My grandmother passed away from breast cancer at just 40, leaving my mum at only the age of 14, she never met any of her grandchildren or saw her own children grow up. My grandpa passed away from prostate cancer last year. My mums sister went to a geneticist after their mum passed away and they said it wasn’t hereditary, but I think I may mention to my mum as now both of her parents have passed away from hormonal cancers, she must be at a higher risk. Cancers such an awful disease and takes so many away from us when their lives are only just beginning. Thanks for sharing your story. #KCACOLS

    • topfivemum
      October 20, 2016 / 22:14

      I’m so sorry to hear you’ve lost so many people in your family to cancer, Louise. Your poor mum losing her mum at such a young age…it’s heartbreaking. It’s interesting that the geneticist told your aunt that it wasn’t hereditary and I wonder what they based it on. I know they plot family trees etc, so maybe they ruled it out that way, but it sounds like it’s definitely worth pursuing. Thanks for leaving such a lovely message xx

  10. October 4, 2016 / 10:23

    Well I’m now sat in a coffee shop in tears. This is such a wonderful post and a real tribute to your beautiful mum (you look so much alike btw!)

    I cannot even begin to imagine your journey over the last few years but I assume everyone who knows you is immensely proud of what you have done and the brave steps you have taken.

    This is why I participate in linkys; because every now and then I come across a gem like this! x

    #fortheloveofBLOG #KCACOLS

    • topfivemum
      October 6, 2016 / 15:10

      Thanks so much for your lovely comment Abi and I’m sorry for creating tears! Everyone around me has been so supportive over the years and have often said I’m brave. I’m not sure if it’s that though – probably the opposite. I’m not sure how I’d cope with cancer the way so many amazing women do. I suppose when you’re hit by a challenge like this, all you can do is get on with it. I’m also loving the whole blogging community – I’m more likely to read posts than do my own at the moment as I’ve got my hands full with two under two…but getting there slowly!

    • topfivemum
      October 20, 2016 / 22:17

      I’m sorry to hear that Julie and I hope you’re on the mend now? To know that so many women in your family have been affected like that breaks my heart. I can’t begin to imagine what you’ve all gone through xx

  11. October 3, 2016 / 17:30

    What a really inspiring story and a lovely way to remember your mum. We are lucky in not having cancer in our family however my daughters grandad has just been diagnosed as terminal lung cancer so it’s going to be a rough time ahead now.
    Thanks so much for linking up at #KCACOLS. Hope you come back again next Sunday.
    Tracey Bowden recently posted…Olivia’s Corner 1st Competition!My Profile

    • topfivemum
      October 6, 2016 / 15:12

      Thanks for your lovely comment Tracey. I’m sorry to hear about your daughter’s grandad and hope he’s being well looked after. Terminal is such an awful word isn’t it? I’m sure you’ll all have good days and bad days and it’s so much harder when you don’t know how long he’s got. I hope today’s a good day xx

  12. October 3, 2016 / 16:20

    God. happy birthday to your beautiful mam. thank you for sharing this you courageous lady #kcacols

    • topfivemum
      October 6, 2016 / 15:13

      Thanks so much for your comment. I’m not sure I’m courageous, but it’s amazing how we find strength when we need it xx

  13. October 3, 2016 / 14:52

    Hi Ruth
    I just popped across from #FortheloveofBlog to visit you after your lovely, thoughtful and empathetic comments on my blog. I wanted to get to know you better and find out about your mum. Firstly, thank you for supporting the #BloggersBeatingCancer campaign with this post. Secondly, thanks so much for mentioning my post over at Maflingo. Finally, thanks for such a moving and honest post. You’ve been through so much and been so courageous in the choices and decisions you’ve made, armed with your knowledge of your cancer risk. What a lovely picture of your mum, too.

    This is such an important post and an important message. YOu are right, we should also celebrate those we love and I got goosebumps when you told about your niece and nephew making that lovely cake.

    Here’s to your mum!

    P.S. I hail from Teesside so I’m a fellow North Eastener.

    #Fortheloveofblog
    Jane Taylor recently posted…Creative Inspirations: Chris Baker Art.My Profile

    • topfivemum
      October 3, 2016 / 15:29

      Thanks so much Jane, your kind comments mean a lot to me. It was stumbling across your article that I found out about the #BloggersBeatingCancer campaign and inspired me to write this post. I’m only just starting out as a blogger so have a long way to go, but I’m already loving the whole community spirit around blogging. Thanks for dropping by and leaving such a lovely message. BTW I’m from Chester-le-Street originally so not far from you at all! xx

  14. October 3, 2016 / 13:26

    My mom was diagnosed with breast cancer at 60- none in the family though- very scary and we explored the possibility of doing the testings as well- esp. since I have FOUR daughters. Thankfully she recovered after radiation and has been in remission for about three years.

    #marvmondays

    • topfivemum
      October 20, 2016 / 22:19

      I’m sorry to hear about your mum Kristin. Going through that, and seeing your mom going through all that awful treatment, must have been tough. I’m so relieved to hear that she’s doing well. With four daughters, I’m not surprised it’s on your mind. Hopefully it’s just a one off case in your family and it’s long behind you all xx

  15. October 2, 2016 / 13:55

    Hi Debbie, I’m sorry to hear your family had all been so affected by cancer and I hope your dad is managing ok. I know from experience he’ll have good days and bad. Have you considered genetic testing? My brother needs to be screeened to see if he has the BRCA2 gene as it would put him at heightened risk of prostate cancer (this is how it manifests itself in men). I think it would involve your dad having a blood test to see if there is a genetic link. You can find more info on this on the National Hereditary Breast Cancer helpline (link above) if you’re interested. Wishing you and your family all the best xx

  16. October 1, 2016 / 09:16

    Hi Ruth, cancer is a scary such a scary disease. It must have been awful losing your Mum at a such a young age, but I think it’s lovely that you celebrate her birthday… And that cake looks good too!

    We know it’s in our family, my Dad had testicular cancer in his twenties and has just been operated on for prostate cancer. Both his parents, his sister and his brother all died of cancer. On the positive side, it has made our family aware of the fact that cancer seems to be in the family.

    xx
    Debbie recently posted…Loggerhead Turtle HatchlingsMy Profile

    • topfivemum
      October 2, 2016 / 21:17

      Hi Debbie. Thanks so much for your comment and I’m sorry to hear of your Dad and his family. With such a strong history, have you considered genetic testing? The BRCA gene in men manifests itself as prostate cancer but as breast and ovarian cancer in women. Of course it’s always such a personal matter and this isn’t for everyone, but the screening could mean you get proper observation. I found my GP wasn’t willing to refer me to anyone until I’d had the genetic tests. The National Hereditary Breast Cancer Helpline (link in the above post) could provide some support if you’re interested in pursuing this. I hope you and your Dad are doing ok. It can be pretty tough to see them go through all the treatment. xx

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