My Story: From doctor to patient
This moving experience comes from Mel, a GP, who found herself on the other side of the doctor-patient relationship when she was diagnosed with breast cancer at the age of 34.
Breast cancer and HRT; it’s an emotive subject. I am a GP and a patient, and when you’re a healthcare professional and then find yourself being a patient, the dynamic changes and it was important to me to be treated as a patient – to be given information, guidance, and advice, and not be left to navigate it by myself.
Maybe the lack of information received was not because I am a GP, with the assumption that I had all the knowledge; maybe there’s a more widespread lack of information giving?
Treat the cancer, beat the cancer – that is the ultimate goal. Now don’t get me wrong, that was also my ultimate goal, and I would do anything to achieve it. At that time, worrying about long term after-effects was not on my radar; I would cross that bridge if and when I came to it, and any suffering would be worth it, and is worth it.
But what if, when you come to cross that bridge, there is no one on the other side to help and guide you?
I was diagnosed with breast cancer at age 34; my daughter was turning 4 that weekend and my son was 19 months old. It was such a shock. I was so young, I had young children, there was no family history of breast cancer, and no risk factors.
Everyone has an individual journey, and in my story, Chapter 1 was surgery – a mastectomy. Chapter 2 – radiotherapy and Tamoxifen (with the side effects of hot flushes and vaginal soreness). Chapter 3 – breast reconstruction. But then there was an unexpected ‘blip’ – a recurrence of cancer in my lymph nodes. So, Chapter 4 was more surgery to remove the cancer and an axillary lymph node clearance, and then I was on to Chapter 5, chemotherapy.
Chemo. Gruelling chemo. It plunged me into the menopause at age 35. The menopause mixed with the side effects of chemotherapy, not being able to distinguish one from the other. Hideous. I had drenching night sweats, and every time I moved in bed the motion would make me so nauseous that first week after a chemo cycle. Many a night was spent on the cool, tiled bathroom floor.
I also look back now and feel ashamed at some of my outbursts, which were so out of character for me. At times, I would feel completely overwhelmed with my children, who were now aged 5 and 3, and despite my best efforts, I could completely ‘lose it’. I am a coper by nature, and I had endless support from my family and friends, but at times it was all too much. It’s not surprising, I hear you say, but when you behave in a way that is unrecognisable to yourself, it’s scary and humiliating. It is long forgotten now but those memories, as I am writing this, are still tinged with shame and stick in my mind with regret.
Looking back, I am sure this was related to my abrupt menopause, induced by the chemotherapy, and I would not have wanted or taken HRT at that time, but I suppose I am just recognising what a beast the menopause can be.
So on to chapter 6. Phew, chemo is over. The menopause isn’t though. I am now on Zoladex injections (to switch off my ovaries) and Anastrozole tablets (an aromatase inhibitor) to ensure I am without a drop of oestrogen in my body. The aim, which I am fully on board with, is to keep the breast cancer away!
After a prolonged time off, I went back to work. This was important to me; my work is a big part of who I am. I put a fan on my desk to help cope with the overwhelming sweats and flushes, whilst trying to stay focussed on the patient in front of me and remain professional. It was very tough.
Chapter 7- I had my ovaries removed. I could then stop the Zoladex injections every month and continued with the Anastrozole, with the plan to have this for 10 years.
Enough of chapters, onto the next phase. Time passed, I had more operations to complete my breast reconstruction, and with time, most things got easier (including the sweats and flushes, headaches and joint pains). But some things got harder, in particular, the vulval and vaginal symptoms due to the lack of oestrogen. This is known as vulvovaginal atrophy (VVA) or more recently known as genitourinary syndrome of the menopause (GSM). This has been the bane of my life over recent years. Sore, sore, sore.
I have tried numerous vaginal moisturisers and lubricants over the years, but mostly for me, they caused more irritation. I found using an emollient wash very beneficial, and also tried numerous emollient products before settling on the one that suited me best.
On a regular basis I would say to my husband, “shall I just try some vaginal oestrogen?” We would chat it through (again!) and he would always be supportive but ultimately say it was my decision. He was right, I had to be comfortable with the decision. But it was such a difficult decision. Conflicting advice. What to do? I was in complete turmoil about it.
I am a healthcare professional who is able to navigate the evidence that’s out there, even though it can be confusing and sometimes conflicting, but what about other women who may not be able to access information or advice, or who are just told, “no”?
Although never-mind the evidence, the bottom line was that every time I considered it, it was completely counterintuitive to give myself oestrogen (even if just vaginally) when I had spent all these years, and been through everything I had been through, to make sure I did not have one drop of oestrogen in me. Wasn’t oestrogen my enemy?
I am forever grateful for the cancer treatments and care I received, but unfortunately, over all the years and all the appointments seeing breast surgeons, breast care nurses, plastic surgeons, oncologists, gynaecologists, GPs and practice nurses, not once did anyone ever discuss or ask me about any menopausal symptoms.
So, the years go by, life continues, and I am now 12 years on, with a wonderful husband who has been on every step of my journey with me, two wonderful teenage children (who have no memory or scars from me ever ‘losing it’!), the most amazing family and friends I could wish for, and incredibly supportive work colleagues. I am very fortunate.
I recently made the decision to start using a vaginal oestrogen. Enough was enough. My symptoms were so severe and worsening, and it was really impacting on my quality of life. For me, it has been a great decision and it has made a huge difference. However, I don’t regret not making the decision earlier; I believe you have to make each decision in life based on the information available and how you feel at the time — you can’t look back with regret.
My point is, things can change, the balance can be tipped and that’s ok. The most important thing is being comfortable that it is the right decision for you.
I can truly understand why women who have had breast cancer may choose to either have or not have HRT, either vaginally or systemically. But they should have the opportunity to make an informed choice, and most importantly, be at peace with that choice.