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Taking control after a secondary breast cancer diagnosis

08/05/17

By Beth and Lisa

I was diagnosed with primary and secondary breast cancer in March 2015. The first couple of months were spent being directed by medical staff (they were amazing!). I had two operations, a corpectomy and a hip replacement. I was prescribed various medications for cancer, pain relief and to induce menopause. I felt very powerless.

Forward on two years, and I feel great most of the time. I have a wonderful family and supportive friends. From the outside I would appear “normal”, but I do suffer from fatigue and have constant aches and pains from the bone mets.

I am a research student, and when I started to read about the latest research on breast cancer, I started to feel like I could regain some control. I want to write a blog post for those women, who have recently been diagnosed, so that they can quickly gain some useful information on secondary breast cancer. My friend Dr Lisa Lee-Jones (Manchester Metropolitan University), who specialises in cancer biology, has been a huge help in gathering useful links and research. Here, I will summarise some of the useful information.

To find out more information on your cancer sub-type (mine is ER+ HER2-) http://www.macmillan.org.uk/information-and-support/breast-cancer/treating/treatment-decisions/Understanding-your-diagnosis/receptors-for-breast-cancer.html. The receptor status helps clinicians determine which drugs are likely to work, using "molecular targeted" treatment. The targeted treatments are newer types of treatments and don’t have the side effects traditionally associated with chemotherapy because they target the genetic defect of the tumour and leave the normal cells alone.  I was prescribed hormone treatments, but I also decided to have a second opinion, which every patient is entitled to via your gp. I requested to go to The Christies in Manchester. http://www.christie.nhs.uk/research/researchers/disease-groups/breast.aspx. I discovered this private clinic, through a friend on facebook. They prescribe medication to take in conjunction with your standard treatments. http://careoncologyclinic.com/. When I took any additional medication, I always spoke to my gp or oncologist.

I wanted to know about treatment options and trials. I also wanted to know about where research was leading in this field. Here are some further links that you may find useful:

• Medical News Today is an excellent resource which summarises research in an accessible way. Here is an interesting article on aspirin.  http://www.medicalnewstoday.com/articles/295304.php?tw

• National Institute of Clinical Excellence provides recommended guidance for treatments-this is meant to standardise treatment across the UK (to avoid the postcode lottery that existed for expensive treatments previously): http://www.nice.org.uk/ https://www.nice.org.uk/search?q=metastatic+breast+cancer

• At some point, we may want to do some trials. The following link gives information on clincial trials, including the four different phases: http://www.macmillan.org.uk/information-and-support/treating/clinical-trials/what-does-a-clinical-trial-involve.

• Clinical trials can be found at: http://www.ukctg.nihr.ac.uk/default.aspx http://www.nhs.uk/Conditions/Cancer-of-the-breast-female/Pages/clinical-trial.aspx

• It might be worth chatting to the following charities to find out about treatment options and newer treatments: http://www.againstbreastcancer.org.uk/ http://breastcancernow.org/ https://www.breastcancercare.org.uk/ http://www.secondhope.co.uk/

• British National Formulary which provides information on medicines and is available free of charge: https://www.evidence.nhs.uk/formulary/bnf/current  

• A good cancer app. It contains the Cancer Guidelines by the European Society for Medical Oncologists: https://play.google.com/store/apps/details?id=com.appyzz.android.esmo

Diet and exercise is one area that can improve lifestyle for women with secondary breast cancer. My spinal surgeon told me to walk every day to improve bone density and posture. My oncologist suggested that I take up yoga or pilates. I have also seen a nutritionist and I am now on a low carb and high vegetable diet and taking a range of supplements. The food for breast cancer website is an excellent resource, with evidence-based information on food and supplements. http://foodforbreastcancer.com/

I have also decided to get my tumour profiled. This is expensive, but it will tell me which drugs should be successful. There is a general move towards a more individualised approach to cancer treatment. Tumour profiling information:http://www.carismolecularintelligence.com/cancer_biomarker_therapy

For emotional support, I turned to the facebook groups “Younger Breast Cancer Network” and “Secondary Breast Cancer Support Group”.

I hope this blog post helps you.

Hair Loss (the second time)

13/04/17

By Nina

Ten years ago, I lost my hair. Not overnight like I thought it would be, or gradually perhaps, but it kind of went matted and within a few days, absolving itself of all life, it died, so my husband offered to shave it off in the bathroom with his beard clippers. I knelt before him shaking quietly as the rattle and buzz of the clippers released strips of my dull dreads, the finer of which, stuck to my silent tears. My head had been so sore and painful and though I felt like an extra from Tenko, it released some of the pain.

Doing the school run in a headscarf does make heads turn, I won’t lie. People can be so tactless and some even, instead of speaking and noticing would pretend not to see me. It was a daily stress. I tried to confront the ignorers with a shout of ‘hello!’ and big smile until they would feign shock and speak back. It is painful, and hard to understand unless one has elicited pure pity in another. It could feel unbearable. My four year old had sent me a Mother’s Day card saying ‘hello mummy I love you will you get your hair back please?’ My older son could barely look at me. Losing hair makes the cancer so visual, scary for a while.

It took a while but I had to embrace it. I wanted to go back to work after the chemo, I had a future, I had a social life and would not be hijacked or made vulnerable by this situation. Months passed before I really accepted it, but halfway through chemo, I began to see a light of possibility. A friend convinced me to do a radio show for my local BBC station, and it was this that finally allowed me to see that the struggle was mostly in my head, not on it. We went to interview the wig lady at the hospital, we tried on a variety of wigs to great laughter and talked about beauty and cultural pressures. I cried a little as I talked about my shocked four year old and my then fearful, disengaged older son. Nevertheless, It was an enlightening experience as callers came through after the three shows, not just congratulating me on being so ‘brave’ (we shall come to that word in another blog!), but thanking me for sharing their own thoughts and fears about hair loss. It made me strong and fierce. I had a long sexy pub wig, a smart bobbed court wig (I was a magistrate then), and a short red work wig (lecturer). I felt emancipated. I could change my look in a day rather than months. Life got better, I returned to work, got several hobbies and I had some of the best times of my life after the illness.

Roll onwards seven years and I was shocked to find myself in this ridiculous, never again, petrifying situation once more. In my heart, I think I knew it was going to return, but I didn’t think I’d lack the same drive and resilience I had the first time. My sense of future was scarred with stage four. I couldn’t see a way out, I couldn’t see a good ending this time.

My hair was coming out at the second week of chemo and I had it cut short in readiness, ordered three wigs, several bandanas, a couple of Buffs and some large hats… I did all my prep so why so low? I tried to think tough but it wouldn’t come. This time I was sicker. I looked poorly, my Chemo cheeks glowed red, my bald eyes and brows sang ‘look at me’ and I felt as saggy and baggy as an old cloth cat. My body was painful, I progressed to a wheelchair quickly and I just couldn’t get to the pub through utter exhaustion to reveal whatever new wig I’d got that month. Or anywhere much.

In and out of Oncology, I struggled with finding my spirit against this new chemo and fatigue hit me hard. But I did gradually get to love my short sandy blonde wig. Rather than snipping myself, which I did with my previous wigs as if I was a living Girls World, I had it professionally cut at a salon, where the hairdresser had been trained at the Trevor Sorbie My New Hair salon. My New Hair is a charity enabling other salons to gain expertise in providing what they call ‘psychological medicine’ for women medical hair loss and it can change what one reviewer said it ‘might look like a hat one minute to a current, stylish cut’ the next. The charity also offer a facility of listing all their Salons That Care, so with the input of just a postcode the customer can find something near to them, becoming part of the process too - a customer not a patient - for what may be the first time in a while.

So I rolled on with the hair loss, wore my Buffs on those cold winter nights, my bandanas in the day and my sandy wig at any special outing or event. Some members of my family preferred me in bandana’s to my wig and some preferred the hair, but I just wanted to make everyone happy and see that I was still in there despite how I looked. It’s so hard to explain the loss of sense of self when hair falls out, and those with very short hair or even no hair might find it hard to understand but when we look at ourselves everyday and to see something other than we recognise, it takes some adjusting.

But I want to say it is possible. You are still you, the world’s odd people will always be odd and your true friends will be drawn towards you not away. We are not Samson. We can get strength from hair loss, and don’t need to feel weak or like we’ve lost something. Be prepared, buy a gorgeous wig, get it professionally cut, be brave and courageous, or don’t! Just mirror the old you then- that is good too - but massage your aching head, oil it, perfume it, nurture it and above all love it for it is you and you are beautiful. We do have a future: it is now. It is the life we are living and we can gain happiness from taking part in it daily. Hair or no hair.

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