I was quite humbled by the popularity of my last data collection blog post Asperger's from an Asperger's mind. Not only did this post add variety to the Repositive blog, but by interviewing my nephew, I got a much better understanding of what Asperger's is, and what it is like for someone who has it.
I've known for quite some time that our April data collection would be Breast Cancer. I have long been inspired by a very good friend of mine (and ex-colleague), who beat breast cancer. I did not know her during her diagnosis or treatment, but it was her courage and outlook on life after having cancer, which inspired me.
I was very lucky that she gave me permission to interview her for our blog, but it should be noted she is rather camera shy. So I am afraid, this blog won't have quite as many pictures as my last one.
The "WTF is that" moment
It was quite surreal interviewing my friend Donna. Firstly, because our humours are perfectly aligned, it's almost impossible for us to keep a straight face when we catch up. But secondly, because we decided to meet at a new 4 star hotel near Cambridge station, the backdrop to our slightly humorous but serious interview was a luxurious floral patterned wall with an army of waiters in red velvet jackets. Like I said, it was very surreal. Before we even got to my interview questions, Donna proclaimed that it was exactly 10 years ago that she had cancer. It certainly called for an overpriced cocktail.
I found it incredible that Donna remembers exactly when she found the lump...
It was a Sunday morning. I got out of bed, and usually I never look at myself, but today I did and I saw a 2 inch lump. My initial reaction was "WTF is that!"
Donna said she knew, deep down, that it was cancer. Now, we all jump to the worse conclusions - I have done it on numerous occasions, so I understand that she did. Sometimes, we worry for nothing, but on this occasion it lead to Donna seeking immediate medical attention... and good job she did! It was a fast-growing tumour and fortunately Donna had discovered it at the early stages.
From "0" to "cancer" in 2 weeks
The time from finding the lump, to getting her biopsy, was only 5 days apart. I can only imagine how unprepared she must have felt. Donna said that two days after finding the lump she made an appointment to see a nurse. She vividly remembers that the nurse took one look and said: "I'll make you an appointment at Addenbrookes" [Hospital in Cambridge]. This was the moment Donna realised her worst fears were real.
Two days later, Donna was in Addenbrookes having her biopsy. She simply stated "it was not a nice experience". One week later, she received her official diagnosis - Grade 3 Cancer. Her partner at the time Mark "fell off his chair in shock", but Donna herself was not shocked at the diagnosis. Donna remembers clearly the day she received this news... it was 5th April and she even remembers her doctor was a "little Indian man".
Chemo, mastectomy, radiotherapy, reconstruction - her doctor told her everything that may happen after giving her the initial diagnosis. Donna admitted it was a lot to take in. I was not surprised. Part of me feels relieved that the medical system reacted so quickly. With such a fast-growing cancer, a short snippet of time can literally save your life. But on the other hand, I feel like rushing Donna through all this information straight away wasn't really taking into consideration her emotional wellbeing. It certainly didn't seem like there was much emotional support during this time.
The ups and downs of treatments
Chemo treatment shrunk the tumor considerably and Donna was able to have a lumpectomy instead of a mastectomy. Doctors then discovered that Donna's cancer was hormone related and estrogen lead. Then came 6 weeks of radiotherapy and Herceptin injections. Donna recalled that these injections were the worst bit because many of her veins collapsed, and the doctors had to resort to "sticking it in [her] ankle".
Then came 5 years of Tamoxifen, which had horrible side effects. Tamoxifen made Donna feel "awful, fussy and have hot flushes", but it stopped her ovaries from working as a necessary measure to prevent further cancer developing.
Donna decided to have her ovaries removed, but on the day of her operation, just moments before going into surgery, Donna changed her mind momentarily. In a moment of terror, she even recalled attempting to leave the building in her surgery gown. But in the end, she collected herself and decided go through with the surgery. I can only imagine what it would be like to go through such a procedure and operation. I have only had two stitches in my life - both in one toe!
Amazing care by mistake
As we continued to chat about her treatments and care, Donna surprised me by saying that she felt like she got amazing care, but that a lot of information she received was by mistake. By this, she explained it was more "being in the right place at the right time" and hearing information, than being told intentionally at a precise time. Now, I understand that this happened 10 years ago, but I would have thought there would have been more support before, during, and after treatment, and all the information a patient was told would have been purposeful and well-thought through.
There is also the consideration that withholding information to a more appropriate time may have been better than telling every patient everything at once. For the doctors and nurses, everything makes sense and follows a procedure, however this is not the same for the patient. Donna admitted; " I wanted to bury my head in the sand".
As well, whilst the doctors told her this abundance of information, they did not tell her about any of the side-effects of her treatments. Perhaps there isn't a right or wrong way of dealing with the treatment of cancer. However, I would think it would be better to explain things in words that a patient would understand, give them enough detail to feel settled but not be overwhelmed, and certainly tell them what may happen next and the potential side-effects. To me it sounds like Donna was informed about the technical procedures almost straight away, ultimately overwhelming her, but then neglected to tell her about any side effects of her treatment.
The faded memory of a clinical trial
The story above was naturally what information Donna recalled when reliving her cancer diagnosis and treatment from start to end. This was the point that I began to explain what Repositive did and why. Soon after explaining the value of genomic data, you could see a fresh memory resurface, and it was actually her daughter sat next to us who pointed it out first. Donna had took part in a clinical trial. She was actually the second person in the country to take part in this particular one.
The trial basically consisted of taking a different combination of drugs in a particular sequence. Donna would need to record how she felt at several time intervals. The trial was known to her as a "neotango trial". I asked Donna why she took part in it.
I took part in the trial to help future generations. I could die, so what did I have to lose?
Obviously, I explained the value of clinical data such as this, and that of genomic data. This triggered another memory from Donna: her doctors asked her if they could keep a sample of her biopsy for research purposes. Again, Donna agreed.
Donna consistently motioned that clinical trials and consenting to tumor samples being used for research, for her, was logical. She seemed confused as to why someone would not share this information. I explained that some people are concerned over privacy or that they could be identified by their data. This didn't concern Donna at all. In fact, it seemed nothing in comparison to the value of the data itself.
Like mother, like daughter?
Having Donna's daughter Alyce in the room lead to a very unexpected conversation. After her mother's diagnosis, Alyce was also encouraged to get checked, however, although it was explained that the type of cancer Donna had was NOT hereditary. Ironically, at the same time, Alyce worked for a company who ran an incentive for women to get their DNA sequenced, especially those with a family history of cancer. So Alyce took the chance. She apparently had the same mutation as Donna, but was told there was "nothing to fear". Something I sense she is still dubious about.
This prompted a conversation about receiving genetic results. There seemed to be a difference in opinion between Alyce and Donna. Alyce seemed a little more apprehensive to know her results, whereas Donna motioned she would want to know. It is an interesting paradox. Would you rather a) not get tested and live the rest of your life unburdened that you may have a genetic risk of cancer or b) find out if you carry a mutation so you have the chance to prepare mentally and seek early medical intervention? It is a very personal question. What the three of us did agree though, is that getting such feedback or results from genetic tests should be adaptable.
Donna and Alyce both pointed out that they had little access to knowledge about genomics. It's the second time I have seen the opportunity for this knowledge to make an impact on a patient, and yet they had no idea about it.
The "F$%K IT" moment
If you recall my opening sentence regarding this interview, I said I thought of interviewing Donna for this blog post because she inspired me. How Donna refers to her diagnosis and treatment and how she dealt with having breast cancer is amazing. Her outlook was so bright, considering how bleak her options were. I really wanted to understand how she did it!
F$%K IT! Stay positive and try to live a normal life.
That was Donna's advice. Donna told me she only had (an incredible) two days off during one year of treatment! From all the side effects of treatment both emotionally and physically, and even having her son James running off after hearing the news, she only took two sick days. It was a classic example of the Great British motto... rolling up your sleeves and just getting on with it. Donna recalled that so many people at Addenbrookes who were getting the same or similar treatment were "crushed" from their diagnosis and subsequent treatments. She kept busy though and didn't allow cancer to define her or take over her life.
Advice from Donna
- Follow your "gut instinct". Don't ignore signs and make sure you seek professional advice if you find a lump. Catching cancer early can make all the difference.
- Explore options - these days there are better treatments, better awareness, and better support. Explore what's involved and take an active interest in what is happening to you.
- Speak to someone who has been through it - meeting someone who gone through treatments and has "made it through to the other side" is a real inspiration. Hope can be powerfully emotive and can help you deal with the stress of getting cancer.
- BE POSITIVE!
The thoughts of the interviewer
Much like in my Asperger's post, I was again surprised by the limited understanding Donna and Alice had about genomic research. This comes from two people who work for biotech companies that deal with DNA data. And one even had her genome sequenced. There really needs to be more visibility and education surrounding the role of genomics in medicine and diagnosis. This should not just be for patients either, but especially DNA test consumers and also the general public as a whole.
(By the way, our Scientific Lead Manuel Corpas addresses these issues in detail in his novel "Perfect DNA" available from amazon).
Precision medicine is the theory that a person can be treated as a person, not as the disease. This would mean you have treatment specific for you. In my opinion, it is clearly the future of medicine. However, I also think we should approach emotional support in the same way, and specific for the person. Some people want to know everything straight away. That is what would be best for them. Others need time to process and want to be kept up to date as their treatment progresses. Others do not want to know genetic results at all. It is a personal decision, and I think the healthcare system could be more mindful over the power of knowledge on a patient and their family.
The healthcare system is like a machine. It has different protocols and processes. Once diagnosed, there is a wealth of experience and knowledge around you developed to give you the best possible care. However, the first step is with you. Make sure you do regular checks and if you find a suspicious lump seek professional medical advice. There can be a clear path for you, but you need to step onto the path first.
The "positive-thinking gene"
At the end of the interview, Donna proclaimed that being so optimistic was not a reflection of how amazing she is. She continued playing it down, saying it was "in her genes" and that she had a "positive-thinking gene". Thats an interesting point, I think. Perhaps she's right.
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