Join The Moobment: Breast Cancer Doesn’t Discriminate Against 400 Men Each Year… But We Do.

· Every year, nearly 400 men in the UK are diagnosed with breast cancer, yet societal stigmas and a lack of awareness force many to suffer in silence, leading to late diagnoses and reduced chances of survival.

· Upon diagnoses patients are given materials which are for women including advice such as “wear a loose-fitting bra” – and you have to find the giggles in this – but it also impacts on treatment.

· James Richards, a survivor, recounts the painful journey of misdiagnoses, delayed treatments, and a lack of understanding from parts of the medical community. In a matter of days James went from a having a single mastectomy, to a double, to a single, to no mastectomy at all as the advice and research is based on female treatment. How many men in this case have had unnecessary treatment as a result?

· Organsation led by survivor James and supported by TV Docs (Dr Amir and Dr Zoe) as well as famous faces encourages men to check, calls for further investigation and engagement without taking away from the female breast cancer cause.

· Join the MOOBMENT – learn how to check with James and Dr Amir, join monthly Zoom support calls for whatever stage of treatment you are at, let’s change the system and properly stick it to cancer.

Breast cancer, a term synonymous with female health, has an overlooked male counterpart.

Every year, approximately 370 men in the UK receive a diagnosis that many find hard to believe: male breast cancer. “Moobs”, led by the resilient James Richard, a fighter of male breast cancer, seeks to dismantle the prevailing misconceptions and highlight the unique challenges men face when diagnosed with this disease.

James’s personal journey with breast cancer has been a rollercoaster of emotions, marked by misdiagnoses, delayed treatments, and a palpable lack of understanding from parts of the medical community. His story, unfortunately, is not an isolated one. Due to societal stigmas and a glaring lack of awareness, many men suffer in silence, leading to late diagnoses and subsequently reduced chances of survival.

Breast cancer in men is often overshadowed by deep-rooted gender stereotypes, leading many diagnosed men to grapple with feelings of emasculation and isolation. The prevailing feminised language and imagery surrounding breast cancer further exacerbate these feelings. This is important – to ensure that women come forward and get the treatment they need – but a rethink on how male breast cancer is treated is needed.

James recounts a particularly tough moment during his treatment journey: “A junior consultant told me, ‘the impact on women is far worse.’

Any kind of cancer is still cancer. The reality is that this consultant wouldn’t mean this but it shows how stigma pervades all of this.

It should be a stark reminder of the lack of understanding and frankly a lack empathy towards men with breast cancer.”

The Facts

• Around 400 men in the UK a year are diagnosed with male breast cancer.
• The average age of diagnosis for male breast cancer is 68. James is 37.
• These include age, family history, genetic mutations like BRCA2, radiation exposure, and more.
• These can range from noticeable chest lumps to skin changes, nipple alterations, and even pain.
• While treatments like mastectomy, radiation, and chemotherapy are common, many men, like James, find themselves navigating a medical system primarily designed for women.

The “Moobs” story is not just a personal story; it’s a call for change. It seeks to challenge perceptions, promote early detection, and emphasise the importance of tailored support for men.

The reality is that like female breast cancer, when diagnosed early the prognosis is often good. But because men don’t check, often don’t know that they can get it – the prognosis is often not good.

Dr. Amir, a renowned TV doctor is behind the campaign says: “While the dangers of breast cancer in women are widely recognised, the cases diagnosed in men annually remain in the shadows. ‘Moobs’ aims to change this narrative by challenging prevailing language and urging men to be proactive about their health.”

Breast cancer doesn’t discriminate based on gender.

Join the “Moobs” movement in illuminating the issue of male breast cancer and ensuring that no man has to navigate this journey feeling isolated or misunderstood.

Please visit https://www.moobs.uk/ and learn. Men, use today to check your moobs and women – have a word with them. Maybe we can all check together and join the “moobment”

What else?

• Moobs is a support network – Whether you’ve just received a diagnosis, are currently undergoing treatment or have successfully beat male breast cancer, we want to hear from you.
• We currently run one monthly Zoom session designed to bring people together at various stages of their journey to help reduce the isolation around the disease.
• The sessions provide a safe space for everyone to talk about anything on their minds, from treatment to fears and everything in between. We are all in this together and anyone can join and say (or not) whatever they think.

SUGGESTED QUESTIONS – JAMES

• James, can you describe the moment you first discovered something was wrong and what went through your mind?
• What was your initial reaction to finding out you had male breast cancer?
• Throughout your journey, you’ve experienced a range of emotions. Which moment was the most challenging for you emotionally, and how did you cope? What about right now as well?
• You’ve mentioned the invaluable support of the chemo ward nurses. Can you share a particular instance where their empathy made a difference in your treatment?
• The revelation of your cancer’s genetic origin must have been a significant turning point. How did this change your perspective on your diagnosis and treatment?
• Your interactions with various medical professionals varied greatly. What advice would you give to other men navigating the healthcare system with a similar diagnosis?
• The potential of undergoing a double mastectomy raised many concerns for you. Can you discuss the impact of such decisions on a man’s self-image and mental well-being?
• How has your experience with male breast cancer influenced your views on gender stereotypes and stigmas in healthcare?
• You’ve emerged as an advocate for male breast cancer awareness. What message do you hope to convey to other men and the broader public?
• Looking forward, what are your hopes for the future in terms of male breast cancer research, awareness, and treatment?
• What would you say to charities, health leaders and Government on this?

SUGGESTED QUESTIONS – AMIR

• Dr. Amir, can you shed light on the current state of awareness and understanding of male breast cancer within the medical community?
• Why do you believe male breast cancer is often overshadowed by its prevalence in women, and what are the dangers of this oversight?
• Does the presentation and progression of breast cancer in men differ from that in women?
• What are the primary challenges in diagnosing and treating male breast cancer, given its rarity?
• “Moobs” aims to challenge the language and perceptions surrounding male breast cancer. Can you elaborate on the importance of this initiative?
• From a medical standpoint, what should men be aware of in terms of self-examination and early detection?
• How do societal stigmas and misconceptions impact the mental health of men diagnosed with breast cancer?
• What advancements or changes would you like to see in the research and treatment of male breast cancer in the coming years?
• Can you discuss the significance of genetic factors, like the BRCA2 gene, in male breast cancer and the implications for patients and their families?
• Lastly, what message would you like to convey to men and the broader community about the importance of awareness and early detection of male breast cancer?

JAMES’ STORY

On The Lump
As a 36-year-old man, I never thought I’d get breast cancer. To an extent you feel invincible. I’d just had a promotion at work but remember feeling a lump and it was only the pain that made me go to the doctors. Looking back, I delayed going to the doctors because I had a busy period at work. It was on a work call where I crossed my arms and felt a painful pea sized lump on my chest. I spoke to a colleague at the time – who had experienced something similar – who was confident it would be nothing but best to get it properly checked for peace of mind.

I assumed the lump was nothing and carried on with work – planning to get it looked at when I had more time.

When I went, the doctor agreed, said male breast cancer was rare, and left not worried at all.

The tests were almost just routine but I thought nothing of it.

But then they referred me.

Hospital Visit
After a recent illness, I went for a check-up, thinking it was routine. The consultant I met told me straight away “That’s not breast cancer” which was a relief – but she sent me for an ultrasound to rule it out. She was sure because I wasn’t the right age for male breast cancer and… I am a bloke.

The ultrasound changed the mood. The biopsy was really painful, and the doctor’s words about something looking suspicious made me really anxious. The mammogram was uncomfortable, and leaving the hospital, I felt scared for the first time.

They advised me to bring to someone with me to get the results. Things were starting to feel dark.

Getting the Results

23rd February 2023 – a date I will never forget.

My mum accompanied me, and my partner waited. The news wasn’t as bad as feared, but hearing my partner cry was painful. I was trying to remain calm for them but inside I was a bag of nerves.

Something had changed in me – I had gone from total confidence to knowing. I knew I had cancer before I got took into a room away from the main clinic (never a good sign!).

I have read others say you aren’t present during this moment – but I felt utterly present.

Stage three breast cancer. They told me how aggressive it was.

I’d need a single mastectomy, this was weird as this is a word I know for women… Not me.

Oddly, I asked about reconstruction – I must have been thinking about Instagram topless pics(!) – and nobody in the room knew if the NHS did it for men and that they’d need to look into it.

On the way home, I read the leaflets I was given. It was all for women – I found out that I needed to find a “loose fitting bra”. At the time, it did actually give me some light relief – but as this went on, it actually became harder to deal with.

Conveyor Belt
The next week was a rollercoaster. Every call from the hospital filled me with dread. I felt a mix of determination and anxiety.

Has it spread?
This was a few weeks on and I had reached a point that I was going to beat it.

I hadn’t told anyone yet – I was embarrassed about having breast cancer… How do you tell your mates that? But I went to London to meet up with 3 to tell them – on the way I noticed 3 missed calls from the hospital.

They had found lumps in my liver and my lungs (i.e. it had spread already) and the lymph nodes were up. They needed to test but the consultant’s words about potential terminal cancer shocked me.

I can only describe it like a bomb going off in my body. I can still hear “You do now need to try and prepare yourself for a terminal diagnosis” ringing around my head months on.

I couldn’t understand it – I, a man, in his 30s, who doesn’t have breasts is going to die because I had a pea in my chest.

Each time I built myself up to a point of almost confidence – cancer was ready to kick me down.

Waiting For Diagnosis…. “Waiting for death”
It took 10 days – easily the darkest ones of my life. Being honest, I was angry with the world. I started walking endlessly each day just to pass the time, avoid speaking to anyone and just really disappear.

I had clarity though – if it was terminal – I wasn’t going to wait to die. I’d take it into my own hands.

The day before I was due to get the results, I went for a walk by the Thames. I stopped for a pint – couldn’t hurt – and my phone rang. It was the Doc calling and her words also ring in my ears “James, stop worrying now – the lumps aren’t cancerous and it hasn’t spread”

“Your lymph nodes are up because of a undiagnosed tooth infection” (I knew I should have brushed harder!

I was that guy, sat alone, crying into my pint. The tears just wouldn’t stop and there was nothing I could do – but honestly, I didn’t care. They bar staff must have though I’d lost it.

Hearing I was about to have 8 rounds of chemo felt like… light relief.

Chemo
The nurses at the chemo ward were lifesavers – they had a genuine empathy that was lacking with the consultants and really were my support team, despite the repeated delays due to the new admin system.

Beginning treatment with four cycles of EC aka the Red Devil, the side effects got progressively worse; but I was lucky compared to some. I didn’t experience any sickness, but I did experience severe brain fog which made concentration impossible during treatment – I would even forget words and a previous speech impediment from my childhood returned – I began to stutter.

Prior to my fifth cycle the results from my genetic test came through which confirmed that I had the BRAC2 gene which was the cause of my cancer.

I knew I was going to have a single mastectomy, but now I was told I would need a double mastectomy.

This threw up a lot for me – I would be completely carved up and the ramifications on my mental health were immeasurable and I had a lot of questions: “would I ever be comfortable taking my t-shirt off?”; “will people think I am trans?”; “will I ever have any sensation on my chest?”; “if the NHS were unsure about whether they could reconstruct a single mastectomy, can they do a double? What will it look like?”

The strange thing is that none of these questions really matter to me – but in that moment your mind swims with confusion.

Being diagnosed with BRAC2 also had ramifications for my immediate treatment – instead of one chemotherapy infusion every two weeks, I would be having two chemotherapy infusions every week for another 12 weeks. It was devastating and it felt that I was beginning the process from square one.

It was a lot to handle and I felt like I was losing faith.

Getting on but going back…
One positive, I could no longer feel that pea. The lymph nodes in my armpits has returned to normal and this was the first time I felt I was 100% going to beat this.

Sitting down with the surgery team I picked up on them noting I had “opted” for a DOUBLE mastectomy. Confused, I questioned it, as I was always told single. They were basing it on female breast cancer to the point I asked “surely after six months of treating me you should know whether or not I need a single or double mastectomy?”, he replied “All I can say is that for women we would usually remove both breasts”.

Something in me had made me record this conversation – I don’t know why – but I am so grateful I did.

I went back to the genetics team who looked at everything and said “based what data we have, we would see no benefit in a man having a double mastectomy as the chances of it coming back in a man – even with the gene – is significantly smaller than if you were a woman with the gene.”

When I went back to the surgeons they looked at everything again and decided that actually – based on where this was – a single mastectomy wouldn’t be beneficial.

So I had gone – in the space of days – from a single, to a double, to no mastectomy. This is because it IS different for men – and proof that not only do we as men need to know and understand more – but there needs to be more consideration in the healthcare spaces.

This approach is what would be needed for women. Remember what I said about the leaflet and “loose fitting bra” – we can and have to find a giggle in a lot of these horrible times – but this made me feel I have to do something to help others.

It’s worse for women…
For many it might sound silly but I was looking forward to sorting reconstruction – getting my chest back to normal. Meeting with the plastics team, they opened quite quickly with “Well its obviously worse for women”.

How do you take this? I’m going through cancer, I hate the way I look and this has been the first thing I’ve looked forward to.

Honestly, I felt like I shouldn’t be there – that this appointment was not important for them.

Now…
It’s been a rough year (ha)

I’ve had to fight cancer – but I’ve also had to fight each step because the materials, understanding and focus of breast cancer is on women. I get it – it has to be. But surely more can be done for people like me? So we don’t feel like a burden. So we can know if we’ll ever be able to take our top off at the beach again (if we ever get to the beach again)?

I’ve found out there are about 400/500 men in the UK diagnosed each year. Did those men challenge in the same way I did or did they close in on themselves?

I have felt so incredibly isolated by some in all of this process. I’ve still not had any kind of reconstruction and I really struggle with the way I look. Not out of any kind of vanity – but when I look at myself, I see the cancer.

But I have survived. I want to use the rough experience I have had to make things better for others. Moobs is all about helping men learn, encouraging more investment and engagement into research and understanding and reminding everyone that cancer is cancer.

And you know what, for many of my family and friends, the launch of Moobs will be the first time they find out I have breast cancer. After all of this, I still feel that stigma.