A place where I am able to talk openly

I am Mark, I live in Sway, Hampshire, and I was diagnosed with breast cancer in 2020 when I was 59 years old

I detected a lump in my left breast in August 2020 and monitored it for a month before going to my GP at my wife’s insistence. My GP examined me and said that it wasn’t a problem, it was likely to be fatty tissue arising from my increasing years, a usual thing for a man of my age, apparently. In addition, he told me, that it’s extremely rare for men to get breast cancer. However, I told him that my previous wife had died from breast cancer and thus my lump was giving me cause for concern. I think with this extra weight of argument he decided to refer me to an oncologist. This was during COVID in the run up to lockdown and no one, including my wife, was allowed to accompany me to any appointments. This was distressing for my wife and not optimal for myself either.

I was seen within 2 weeks. The consultant after examining me concurred with my GP but for ‘belt and braces’ and to reach a conclusive verdict for my peace of mind, sent me for an ultrasound appointment. Again, not too long to wait but at night your worst fears creep in. 

The ultrasound nurse was brilliant and possibly saved my life. The scan showed that there was a nasty looking lump underneath another fatty looking lump. She did two biopsies and then it was another week's wait for the results. More lost sleep.

I had a call for a follow up appointment with an oncologist at Southampton University Hospital (SUH) to discuss the biopsy results. Having gone through my wife’s breast cancer journey until her death 4 years later, I knew the format of appointments. Given that we were under pandemic restrictions, I felt convinced that what I was going to be told would be bad news. More lost sleep for my wife and myself.

As I was called in for the consultation. I was told another nurse was going to be sitting in on the appointment. That was really all the confirmation I needed that I had cancer. In the meeting the oncologist apologised for the bad news and said that I was the first man this year they had had with breast cancer. I punched the air and said ‘Yes’ I’ve never been first at anything in my life!!’ I’m sure not the reaction they usually get or indeed were expecting, My treatment plan was a mastectomy with 5-10 years of hormone treatment (Tamoxifen). I was hugely relieved not to need chemotherapy or radiotherapy at this stage, pending the outcome of an examination of the removed nodes.

Around 3 weeks later my wife dropped me at SUH with my overnight bag for my operation. I was put into an anti room next to the breast care unit but not taken into the unit itself. From the anti room I was prepared for surgery. When I came round from the anaesthetic I was back in the anti room. A while later I was visited by the surgeon and nurses. They discussed the operation with me, all had gone well and I could go home and not stay overnight.Thinking back on it, I think they didn’t want me on the breast care unit ward with all the women and there was no way they could take care of me if I stayed in that anti room overnight. But I was happy to go home as I don’t like hospitals.

Post op is a bit of a blur but I can recall not wanting to look at the place where my breast used to be, even with the dressing still on. It took me around 6 months to be able to look at myself in the mirror. Today I still won’t go topless within anyone else except my wife. She says it really doesn’t show but it’s such a huge difference to me I can’t yet overcome that. In spite of that I did allow Southampton Breast Clinic to photograph my chest at two stages in my recovery at scheduled post op follow ups as they had no photos to show other male patients.

Work had always been an important part of my life and I greatly enjoyed my job. Being a relatively key member of a small team, I started working from home after a week’s recovery, working at my own pace but the job had various reporting deadlines I was keen not to miss. My employer had been very supportive during my 3rd wife’s illness and I was keen not to be seen to be swinging the lead. It’s possible I went back to work a bit early but for me work took my mind away from my predicament and installed a bit of normality to my life warding off the hours spent mulling over the cancer.

I joined online bereavement support groups after the death of my previous wife to share my story and to try to help others deal with the pain and in doing so helped myself work through my own bereavement. I applied this to my cancer situation by joining a MacMillan online forum but in this instance, it wasn’t very successful as so few men with my condition were available to chat to.

The NHS team dealing with my cancer were absolutely brilliant but in terms of the aftercare I received, this has fallen short of that given to women. No annual check-ups or mammograms, I was simply placed on a self-referral system for 5 years.

The hardest post op matter was taking Tamoxifen, this was a real trial. Hot flushes, severe night sweats, irritability, headaches and to compound my emasculation from having a breast removed, my sex drive going to zero. So bad was this aspect that it left me feeling that I was no longer a real husband to my wife.

My self-esteem took a huge hit but I put on a bold front and avoided any kind of contact situations with my wife to stop me hurting her feelings. She has been incredibly supportive throughout and understanding. But it was a real problem and living with the other side effects of Tamoxifen has been very detrimental to the quality of our lives.

Then after 3 years of the hormone treatment I was feeling very out of breath playing tennis and working around the farm. I saw a locum GP and explained my symptoms and that I was concerned that I was suffering another side effect of Tamoxifen even though this was extremely rare. The locum had never heard of this side effect but I showed her the literature that comes with the drug which showed it as being one of the very rare side effects. As I hadn’t had any follow up checks and these were overdue she sent me to Lymington Hospital for 5 blood tests the next day. She called me back a day after the tests and advised that she suspected a pulmonary embolism and sent me immediately to get blood thinners from the local pharmacy and told me to immediately stop any strenuous activities. A CT scan was scheduled for the next day and a sizeable pulmonary embolism, fatal in 10% of cases, was discovered. The consultant called the breast clinic and it was agreed that Tamoxifen had caused the pulmonary embolism and I was taken off it immediately.

A follow up oncologist visit confirmed the findings and it was agreed that I should not continue the remainder of the 2-7 years of Tamoxifen.

Relief from the severe side effects of Tamoxifen for sure, but a worrying time going forwards.

So now I have no ongoing cancer treatment and no annual checks or mammograms. I’m on my own but I can still self-refer for another two years. We have decided to pay privately for annual scans.

I’m doing well and I believe that a complete change of lifestyle has helped my recovery and my general health. I'm very fortunate that I was in a position to be able to do that, not everyone is so lucky.

All through the process I’ve encountered a reluctance by the medical profession to take my breast cancer concerns as seriously as would be those of a woman. My treatment from surgery onwards has been below that given to women.

I didn’t know men could get breast cancer, even though my wife had suffered and died from it.

It would have been easy to have accepted the initial GP diagnosis and gone away from the surgery only for the cancer to grow and become a much bigger problem, possibly life threatening.

Hence, now my determination to raise awareness of male breast cancer and to get equality of treatment for men and women with the disease.

When I joined The Men’s VMU (Virtual Meet Up) I was pleased to find that it was well attended and structured in progressing awareness and change. It also turned out to be the Forum that I had been searching for, a place where I am able to talk openly about my cancer diagnosis, with other men who have been diagnosed with breast cancer.