My name is Darls and I was diagnosed with stage 2 invasive lobular hormone positive breast cancer of the right breast in October 2016 at the age of 55.
I’m not special; 1 in 8 women will have breast cancer and this type is not uncommon, the second most diagnosed, although this type is a bit sneaky, forming a single cell pattern, harder to detect as there is not always a lump due to a lack of a protein called e cadherin which is what binds a normal tumour together. It can go undetected for a long time especially in dense breasts and is also often late diagnosed.
My relationship ended shortly after my diagnosis. I had a double skin sparing nipple removing mastectomy which I requested in May 2017. As this type doesn’t always show on imaging, I felt this was the right option for me as it would surely be torture for me going for a yearly mammogram to pick up a cancer which wasn’t seen on imaging the first time.
The diagnosis of breast cancer is subjective; for myself and other women I have since spoken with, it meant retreat; I didn’t feel lonely or depressed, but I felt very alone and wanted to be on my own to make sense of things. I read everything (peer reviewed medical papers) I could about my cancer – which makes me a challenging patient.
This country is way behind in cancer treatments and I advocate for myself and now for others. I count myself very lucky indeed that my team and oncology unit have been so brilliant. I am truly grateful for all their hard work, but post cancer surgery and treatment is a wilderness. No advice or help with sex after breast cancer, confidence, many things that women need help with. Many relationships end after breast/gynaecological cancers are diagnosed.
Breasts are very much tied into female psychology. From puberty when you go for a teen bra fitting, the way the opposite sex reacts to them, the way they feel when aroused, to becoming practical food dispensers when one has a baby.
I have always had large dense breasts, spoken at for most of my life and now I enjoy people talking to my face. It isn’t however an ‘Angelina’ nor is it a ‘free boob job’ both of which I have had said to me.
My standard reply is; “swap with me any day babes, happy for you to have to go through what I have”.
I had become hypercritical of how I look. The end of my relationship the day before my mastectomy has fed massively into my lack of confidence in my appearance. In truth, I was not a fan of how my new ‘foobs’ looked – they reminded me of man boobs, they look fine when dressed but naked, they looked bald, lumpy and mishapen (quite common).
The aromatase inhibitor was adding to my surgical menopause via side effects; skin drying, hair coarseness, fatigue, hot flushes, terrible joint pains, lack of libido, weight gain, vaginal dryness (sob) and I felt I looked 100. I feel 100 most days due to these damn tablets but I won’t let them or cancer get one over me.
I have an amazing nurse/beautician who lives nearby and I went to her for help . I had ‘sprinkles ‘ which puts small amounts of botox in around the eyes to give realistic results and I was very pleased; I still crinkle when smiling and am not frozen. I noticed my top lip thinning and lines were starting to appear so had filler, again in small sprinkled amounts. I was very cautious with the amount of filler I had put in and while I would love a BJ bouche, I am aware I do not need to look like a 25 year old Love Island contestant. My confidence started to grow. Small steps.
The hardest of the side effects for me has been the weight gain. The weight gain may now be causing me additional problems. A recent visit to A&E for continual chest pains revealed a dodgy ECG. This couldn’t be repeated at the second testing so my GP sent me for a heart scan to check for disease – another side effect of medication. My cholesterol is high, my liver function is raised all due to these meds – these meds are not for the faint hearted.
You’d be surprised how many people you know are experts on weight management quoting all sorts of science, diets, advice, but you know what, this is my body and I know how hard I have tried to maintain my weight. Over this summer, I had a birthday a wedding and some social events to go to. I gave myself a medication holiday for 3 weeks and lost 7 lbs while eating all the wrong foods, drinking and generally enjoying myself.
The aches and pains were less, the fatigue was less, it was all, so much better I was back to me almost. I have another 5 years on these tablets if I stay on them that long. Many women take quality of life over the aromatase inhibitors due to the horrible side effects. Approx 30% stop treatment before they are due, preferring to take their chances.
I had for a long time thought about having breast tattoos. I didn’t want nipple tattoos. I loved my nipples, they were beautiful, sensitive, pleasure temples and these breasts don’t feel anything like my other breasts did and I can’t pretend they do by making them look similar. It’s a personal choice.
I chose to make them works of art. Trusting someone to decorate something of such psychological delicacy needed much research. I wanted something very feminine, delicate and to be a collaboration between me and the artist. I searched for a year and found a beautiful lady in Norwich. When I first met Emma from True Tattoos in Norwich, I knew she ‘got it’. Talented and empathic, we emailed ideas and pictures.
Each flower represents someone in my life, a special month or other memory. My mum’s wedding bouquet flowers, gardenia, stephanotis, my children, cherry blossom, snowdrops, my family various flowers and a few others. The swallow represents my dad who died when I was 12. He is placed over two white roses that represent me and my younger sister, who is my rock. He looks over us. I like asymmetrical tattoos and wanted to finish the tattoos before the new year (2019) as I needed to draw a line under the past .
The original idea was to tattoo over the scars but I left them there. I cannot feel my breasts therefore the 12 hours sat for the tattooing was a breeze. They have given me the confidence I needed in my body. I absolutely love them and would walk down a catwalk topless they make me feel that good. They remind me how strong a woman is. The strength you find and then some because you need to. My scars remind me of how strong I have been, how I have done this for myself. I do not however have confidence for intimacy, I am sure that will come, but will take much work with my therapist for that one.
At this time I cannot imagine what a partner would contribute to my life apart from sex, but I can do that myself. I am single and love it.
I read last year of a woman who had been through breast cancer, got the courage to start dating again and told a man she was getting on really well with on the fourth date that she had had breast cancer. He got up from their table and said “I can’t do that” and walked away.
I can’t tell you how much I felt for that poor woman. I decided to carry out my own research so for the last year have put myself on 3 different dating sites. One right winged broad sheet newspaper dating site, one left and one of the top fee paying multi advertised. I didn’t go into much detail about my breast cancer but mentioned it in my profile. All I said was that I had encountered it.
Collectively, over the three sites I had approximately 1,370 views of my profile. over the three sites, I had 16 people approach me. 2 of those to wish me well. I met three. Nice chaps but no chemistry. Least of all from the most popular site that is a matchmaking service. I don’t think I’m a minger, so it must be cancer.
While I get it if you have lost someone to breast cancer, you may not want to be reminded of the experience, but surely, is it that bad? What are people thinking happens? At my age (58) surely we are over all that superficial stuff?
If I do it again my next add will read: “bolshey bird with false tits seeks bloke with semi erectile dysfunction for humane experience!”
I am a 58 year old woman living a suburban life with 2 fabulous kids. I Like swimming, Pedro Almodovar films, seaside, Tracey Emin, Paula Rego, Franseca Woodman, Cindy Sherman Tate modern.
Encouraged to go to university when I was 48 by an amazing fiery Glaswegian woman I was working for. It took 3 attempts at entry (no maths) after being found to be dyslexic and dyscalculic, to be finally accepted by London South Bank University to study psychology where I found a special interest in sexuality; paraphilias, other research topics included swinging, BDSM and trans lived experience and my Final year dissertation was ‘Image construction in heterosexual tranvestite men’.
I love working in sexual health and wellbeing as a sexual health advisor in the NHS with a fabulous team but am so frustrated by the numerous cuts to services leading to a rise in antibiotic resistant infections and sexual transmittted infections such as syphilis making a comeback. This is why we need more sexual health campaigns to raise awareness.
I was diagnosed with Breast cancer in October 2016. I have undergone 4 lumpectomies, a double mastectomy, salpingo oophorectomy, breast reconstruction surgery including my Tittoos. Absolutely love them.
I would like to say a huge thank you to Darls for sharing her very honest and often funny experience of breast cancer and regaining her confidence post treament. I am so pleased we connected on twitter, one of the good aspects of social media within the world of cancer care and support. I really hope those of you going through breast cancer treament, are post treatment or living with cancer will find this blog can help you to regain your confidence in whatever way you can, hopefully with the help and support of partners, family, friends and even strangers on social media. Knowing that you are not alone is so important.
Useful Websites, Support Groups and Books
Breast Cancer Care : www.breastcancercare.org.uk
Breast Cancer Chat WorldWide :@bccww
Breast Cancer Chat Ireland :@bccire
ABC Diagnosis : www.abcdiagnosis.co.uk
Young Womens Breast Cancer blogspot : www.youngwomensbreastcancerblog.blogspot.co.uk
Pink Ribbon Foundation : www.pinkribbonfoundation.org.uk
CoppaFeel : www.coppafeel.org
Prevent Breast Cancer : www.preventbreastcancer.org.uk
Asian Breast Cancer : www.bmecancer.com
The Daisy Network : www.daisynetwork.org.uk
Fertility and Cancer : www.cancerandfertility.co.uk
College of Sex and Relationship Therapists : www.cosrt.org.uk
Jennifer Young : www.beautydespitecancer.co.uk
RecoBra : www.recoheart.com/recobra-story
LoveMeAndMySecret : www.lovemeandmysecret.com
HipHeadWear : www.hipheadwear.co.uk
Pelvic, Obstetric and Gynaecology Physiotherapy: www.pogp.csp.org.uk
SimPal : www.yoursimpal.com
Dr Liz O’Riordan and Professor Trisha GreenHalgh – The Complete Guide to Breast Cancer: How to Feel Empowered and Take Control