Friends and family alert - I'm going to blog about the thing that no-one ever mentions after you've been diagnosed with breast cancer. Sex. I've spent several months talking about this with many breast cancer survivors, and felt the need to share just a little of what I'd learned.
What patients don't tell you about breast cancer
As a breast surgeon, I never really appreciated the effect that cancer treatment has on a patient's quality of life. And that a sex life is an important part of that quality of life. Patients have to deal with accepting they have had cancer, body image issues, fear of recurrence etc etc - you all know the drill. For those of us with oestrogen-sensitive breast cancer, we are given 5-10 year's maintenance treatment of tablets +/- injections to stop our bodies producing oestrogen, and therefore reduce the risk of recurrence.
For young women like me (and by young, I mean pre-menopausal), we are thrown into an instant, prolonged and severe menopause. I've blogged before about the joys of this, (hot flushes, night sweats, weight gain), but it can also dramatically affect your sex life.
The common gynae side effects are loss of libido, vaginal dryness / irritation and painful sex, as documented in this Breast Cancer Care leaflet. Many women going through the menopause are offered HRT and/or topical oestrogen creams to help with all of this, but for us breast cancer survivors, it's off the cards.
A new normal
I couldn't wait for hospital treatment to be over so I could get my life and my marriage back to normal. I will never be the woman my husband married almost 5 years ago.
He now has a wife with a numb, often painful fake breast with a brillo pad for hair who throws the covers off in the night dripping in sweat. I'm slowly learning to accept the new me, and luckily for us my husband much prefers me with short hair.
He has been truly amazing at coping with whatever treatment threw at us. But the thought of 10 years in a relationship with little intimacy, for want of a better word, possibly followed by another 10 if I'm still pre-menopausal when I finish Tamoxifen, is not a good one.
Who do you talk to?
As a breast surgeon, I rarely discussed patients' sex lives with them at follow-up clinics. It wasn't something that came up during a consultation, and having been a patient myself, I can see why. Also, a lot of the women I've spoken to don't think it's something they should trouble their GPs with. You feel like you should be grateful that you've been treated for breast cancer and are now 'surviving', and that asking for an active sex life is not something you're entitled to. God knows what it's like for patients who have had bowel/cervical/prostate cancer to ask about help with sex and intimacy.
The joy of Twitter
There are a couple of fab women who I follow on Twitter, @jodivineuk and @SamTalksSex who are doing their bit to promote sex and remove the stigma and taboo of talking about it. Recently, Emma Watson saidthat she subscribed to the OMGYES website to learn about female orgasms, which caused an uproar in the media. If normal women feel awkward talking about it, how are those of us with cancer meant to?
The one thing I've learned from my secret twitter talks is that you need to be open and honest with your partner. Breast Cancer Care have a great leaflet about Getting Back to Sex.
Spontaneous sex is now unlikely to happen without a bag of tricks, and a lot of women have a 'sex bag', which I think is a brilliant idea. This is what my fab breast cancer friends have said you might need / want to consider.
Bag of Tricks
The first item on your shopping list is lubricant. At a recent breast cancer conference I went to there were several companies promoting lube who were targeting the breast care nurses. Surgeons paid no interest in those stalls. As a doctor and a patient I was thrilled to find that some are available on prescription, so cancer patients don't need to pay for them. The one my GP recommended is called YES, and I can highly recommend it. It's water-based, and comes as an internal moisturiser to help relieve dryness and irritation, as well as a lubricant. Most women prefer this to the silicone-based lubricants which smear everywhere and don't stay put.
The second item is a small vibrator. The lack of libido coupled with feeling dry and tight mean it can take a long time to get in the mood, and this can really help.
The third item to consider is a pack of dilators, and a lot of American breast cancer websites recommend these. Whether you use them on your own or with your partner, it can really help to lessen the pre-sex nerves, anxiety, and fear, and hopefully remove the pain.
Too much information?
This was really hard for me to write about. It's an incredibly personal subject that has affected my own relationship, and that of almost everyone else I've spoken to with breast cancer. A lot of us feel like it's our 'fault' that sex is now so difficult, and it's bloody hard to talk about.
Times are changing
Reassuringly, the oncology world seems to be changing its mind about topical vaginal oestrogen for breast cancer patients, although this is still very controversial and nor everyone agrees. The old way of thinking was that if women used them, the tiny, tiny amount of oestrogen that they would absorb would increase the risk of the cancer coming back. However, small trials such as this one have shown that there is no obvious increase risk in recurrence for women taking Tamoxifen. It is up to the doctor and the patient to agree that the risk is worth taking, and not everyone wants to take that chance.
I think some doctors can become too obsessed with numbers and survival statistics, and rarely think of the patients who are suffering. Your patients don't just fall into neat groups such as those with recurrences/metastasis, or those without. Yes it's great as a doctor if your patients have survived for 20 years without a recurrence, but it's not so great for the women if they have had a miserable quality of life for all that time.
My own oncologist has written to my GP saying that if things get bad, she's happy for me to be prescribed topical oestrogen. At last doctors are realising that finishing cancer treatment is not the end goal. It's getting your quality of life back. Who cares if I've gone through two months' of gruelling treatment if my marriage is reduced to two friends sharing a house.
To anyone out there who is struggling with this, regardless of whether you've had cancer or not, I urge you to take a chance. Talk to your partner. Talk to your GP. Explore a few sex toy websites. It's trial and error, but you can have fun trying.