How often have you walked out of a consulting room partly reassured by all the questions answered and also partly plagued by the one or two things you just forgot to ask? By this, I don’t mean (if you’re anything like me) the questions you’ve diligently noted down in order to quiz any unsuspecting consultant? No, by this I mean the bigger picture questions that keep you awake at night or creep up on you when you least expect. In cancer land, that is a question like: ‘How long do you think the cancer was in my body before I found the lump?’ Questions that have no real bearing on the treatment plan in front of you, but questions that are no less important or interesting.
Since diagnosis day, I have been making a note of ‘random questions I wish I’d asked’ for a blog post at the end of active treatment. Currently on the list (in addition to the above) is ‘what do you actually do with the cancer you extract?’ Is there a cancer bin? Is it incinerated? Or, can they store it and retest it should there be developments in science? I know it sounds strange and I would guess the answer is incineration otherwise they’d have to take out extra storage space. But, it’s just one of those questions that for someone only recently inducted in to the world of cancer and unacquainted with the inner workings of hospitals actually finds rather interesting.
There is one question, however, that I have wanted to know the answer to ever since I came round from general anaesthetic number two after my egg harvesting.
And, on Saturday at Younger Women Together I got my answer. Younger Women Together is a fabulous and free two-day event held by Breast Cancer Care for women aged between 20 and 45 who have been diagnosed with primary breast cancer. Not only is it a great opportunity to meet and share experiences with other women in a similar position (none of which I have managed to spot in my own hospital), but it is also – with its expert speakers and workshops – the perfect environment within which to ask a few of those burning questions. I couldn’t recommend it highly enough to young women who are grappling with a diagnosis, undergoing treatment or trying to find their ‘new normal’ in the years that follow. I left inspired, moved and supported. And with my answer!
Starting with ‘the question’ here are a few things I am glad (and thankful) I now know (apologies in advance if I get any of the detail wrong, just passing on what I scribbled down):
Fertility question: If I am rendered infertile as a result of treatment, am I still able to carry the embryos frozen as part of my fertility preservation before chemo?
Answer: Yes! It may involve a few drugs, but just because your body has stopped producing eggs, it doesn’t mean you can’t carry one you’ve already harvested. Great news.
Fertility question: Can you test your fertility status before going onto Tamoxifen?
Answer: With difficulty if you are recovering from chemo and on Zoladex. It is possible to test for fertility using blood samples (for your hormonal profile) or scanning, but drugs can interfere with the results until your body is back to normal. Testing on Tamoxifen is also not advised due to the fact it stimulates oestrogen receptors in the uterus, while reducing oestrogen levels elsewhere and can cause temporary loss of or irregular periods, so may also give misleading results.
Fertility question: Can you predict the chances of someone losing their fertility during chemo?
Answer: The chances depend very much of the drugs used in the chemo regime. Alkylating agents (such as the C in FEC) are considered more problematic. Having said that, the C when used in the CMF regime seems to cause more problems than when it is used in the FEC regime. The Tax regime is less concerning. Statistics suggest women under 30 have a 5% risk of losing their fertility compared with a 50% for those between 36 and 40. I am somewhere in the middle! Age, drugs, dosage and a woman’s ovarian reserve (before treatment) help doctors predict an individual’s chances.
Fertility question: If you get pregnant after a cancer diagnosis, should you expect to be treated differently?
Answer: The short answer is yes. Chemotherapy can cause possible cardiac issues, which may not present themselves until pregnancy when the heart is working harder. This means echocardiography and closer monitoring is probably advised. There is a small increased risk of complications at delivery and a 30% increase in the C-section rate (although it is not known whether women are choosing this option as a way of taking more control). Where breasts have been reconstructed, pregnant women may wish to wear a prosthesis if the unaffected breast grows and leaves the woman feeling lopsided!
And a few ‘Did you knows?’:
1) According to the latest statistics, 537 women between the age of 30 and 34 get breast cancer in the UK every year. That is compared with 2,899 women between the ages of 40 and 44.
2) Even with a mastectomy, there is usually some breast tissue left behind in the affected breast.
3) A new report just out has suggested that Phytoestrogens (basically oestrogen-like chemicals found in plant foods such as seeds, beans and grains) can reduce the risk of cancer.
4) Omega 3 can help with joint inflammation and chemo brain (or memory issues)!
5) Valerian can help with sleep problems while on chemo.
6) Figs contain calcium
7) And, wise words from speaker and fellow cancer survivor Kelly Short: ‘Don’t think about yesterday, you were a different person then.’
8) www.insurancewith.com is a useful insurance provider for those looking to travel with a cancer diagnosis.
There was also plenty of exercise-related material I will save for another day. As you can probably tell these two days have enhanced my life – and my understanding of the illness I now face. If you’re a young women with a breast cancer diagnosis, I would urge you to book on today for a strong dose of inspiration, motivation and practical advice. Click here to find out more.
And, if you have a burning question that you really want answering, why not post it here (as long as it is not ‘what is the meaning of life?’). Someone out there might know the answer, or, if it’s cancer related, I might just be able to add it to my list once I have summoned up the courage to find out which bin my cancer landed in!
NB: There is a whole other side to the event that I feel it would be wrong to touch on in a blog and that’s the amazing and wonderful women who sat alongside me over those two days. How amazing it was to sit among women who didn’t know the me with hair, who understood what it was like to spend a night awake with nothing but a hot flush for company, knew how to navigate the terminology and side effects that come with the words breast cancer and understood the importance of a smile. Less a support group and more a practical and lively forum for sharing experiences. I feel privileged to have met these amazing women.