Laura is a mindfulness meditation practitioner, leading group and one-to one sessions in both the private and voluntary sector. For more information, visit www.lauraashurst.co.uk A worrier from childhood I have always been a worrier. That natural ability that we all have to worry about things …
Tag: secondary breast cancer
Today, Nic writes about being diagnosed with secondary breast cancer… Completing treatment for my primary breast cancer is quite possibly the most surreal experience I have ever had. My friends and family celebrated their huge sense of relief that I was through the darkness but …
What you need to know
By Emily Jordan, co-founder of Ancora.ai
“Too many patients don’t live near or get treated at a cancer center. Local oncologists need information and patients need to be informed of their choices and empowered to ask for them. Clinical trials are NOT last resorts in terms of treatment.” Metastatic breast cancer patient, Virginia, USA
Why have I never heard about clinical trials?
If you’ve never thought about clinical trials as an option for breast cancer treatment, you’re not alone. I’ve heard from countless patients that trials are not something that crossed their minds or that their doctors have brought up with them.
Clinical trials are how new treatments are brought to market. There are thousands of trials ongoing and each trial is looking for a particular type of patient, whether that’s someone at a specific stage of breast cancer or with particular genetic mutation. This can be difficult information to go through on your own as a patient if you wanted to look at what trials are out there. You also can’t necessarily rely on your doctor to bring them up. Oncologists see many patients each day and already have to optimize standard-of-care treatment for each patient, so it makes sense that they don’t always have the bandwidth to research and entertain all clinical trial possibilities for every patient. Even if a doctor does consider trials, typically they’ll only assess options in their own research center that they know about first-hand. For patients that aren’t being treated at a research hospital, this means most will never hear a word about trials, much less be presented with highly suitable options.
3 reasons you should care about clinical trials
With Ancora.ai, we are trying to change this pattern. We want to make sure that every breast cancer patient is aware of their trial options and that they are empowered to easily find this information on their own. In this post I’ll try to explain why and also share some quotes and experiences from patients who have been through trials.
Clinical trials are important for a few reasons:
1.Trials can benefit you!
- Just because you don’t hear about trials doesn’t mean you should ignore them. What patients aren’t usually aware of is that trials can be considered at ANY point in the treatment journey. Trials can offer more tolerable, newer, or more convenient treatment options vs. the standard of care. This, of course, can be particularly helpful for patients who are treatment experienced or later stage, such as secondary patients. Right now there are more than 1,500 clinical trials running for metastatic breast cancer. It can be good to consider your trial options before making a decision to start a standard treatment.
- “The two clinical trials I was part of gave me access to new drugs before I could get them in the clinic and 3.5 years of tumour stability…a lot when you think the median survival for metastatic breast cancer is only 3 years”, Canada, 10 years with metastatic breast cancer.
- If you enter a trial, you’ll either receive a new treatment or drug combination (that could become the new standard of care) or a standard-of-care treatment. Placebos are hardly ever used in cancer studies these days, as it would be unethical in most cases to do so.
- Some underserved groups stand to benefit especially from participation in trials. On average, for example, black women are more likely to have triple-negative breast cancer and have more aggressive cancer that is more likely to return. Clinical trials on triple-negative breast cancer are ongoing and will help not only to advance research in this area but also are likely to benefit trial participants who will receive new treatments before they are approved for the market. There are currently around 100 Phase 3, interventional clinical trials recruiting for triple negative, metastatic breast cancer.
2. You want to be prepared!
- Even if you are doing well on standard of care or off of treatment, and a trial isn’t right for you right now, it’s good to know what’s out there. One of our users, who has Stage IV cancer, put it well by saying:
- “You want to have those planes on the tarmac and have a list to reach out to.”
- It’s good to keep trials in mind if you want to stay informed on what’s up and coming in breast cancer treatment in case anything ever changes with your personal health situation.
3. It’s easy!
- While it’s still hard for doctors to make time to look at trials comprehensively for each and every patient who might benefit from them (we’re working on a solution for this), it’s actually now very easy for you to search for trials and stay updated on the latest developments in breast cancer.
Ancora.ai makes it simple to stay up to date on trials if you fill in our patient questionnaire (see “How Does Ancora work” on our home page), save a profile and set your notifications. It takes 4 minutes to do this on average. Then you’ll receive alerts if any trials that might be suitable for you are initiated or updated. In this way, you can make sure you don’t miss anything but don’t have to actively worry about or track trials. We suggest you spend a few minutes setting up your search and then you can forget about it, knowing that you’ll still be updated on any news. If you have any questions, you can always reach out to our team for support ().
“Clinical trials are an OPPORTUNITY. it’s old school to think of them as a last resort. I found and advocated for my clinical trial. My oncologist doesn’t have the dedicated time to search for me. We must take an active role in our own survival.” – Metastatic breast cancer patient, California
How can I learn more?
If you want to find out more about clinical trials, you might also want to check out a few more resources. We can recommend the following:
In August 2020 Ancora.ai and Ticking off Breast Cancer did a focus week on clinical trials together and you can see some of the materials we developed here:
- Summary of clinical trials background info and who can join one
- Post on what every patient needs to know
- List of questions to ask clinical trials staff if you’re considering joining a trial
- Video of our Instagram TV Q&A session on trials and a recap post with all the Q&A topics
You can also follow Ancora.ai on social media to stay up to date on all things clinical trials:
Please note that I, Sara Liyanage posting this as Ticking Off Breast Cancer, do not accept responsibility for the content of the guest blogs. The information and content provided in all guest blogs is intended for information and educational purposes only and is not intended to substitute for professional medical advice. Please seek professional advice or speak to your medical team if you have any questions about the issues raised in this guest blog.
My background A bit of Context Sometimes I look back on the days when I had primary breast cancer and think how far I have come on this cancer journey. Everyone hopes that Secondary Cancer doesn’t happen to them. Others fall for the weird assumption …
In this guest blog, Kate writes about her diagnosis with secondary breast cancer…
Breast cancer has been a part of my life for nine years now. It first made itself known in 2011 when, at the tender age of twenty-one, I unearthed a hard, immobile lump in my right breast. My narrative is a rather long one, having been diagnosed three times before thirty, so we’ll hone in on the now. Now in 2019, I have been told that I must bear the weight of a stage 4 diagnosis.
The news of my recurrence came at a time when I mostly expected it. I am disappointed with myself for this self-fulfilling prophecy that I fueled with negative, life-limiting thoughts; I had never truly believed in my heart that I would be done with breast cancer. Oddly, I hadn’t spoken to an oncologist for years prior to stage 4 – my breast, and my breasts alone, were scanned yearly and I received my results from my breast cancer surgeon, a thoroughly amiable and supportive woman who acted upon any concerns I had promptly, calling into action a series of tests to rule out further spread whenever I felt a neurosis about an ache or a swelling somewhere in my body.
So, when I experienced a dull ache and discomfort in my left hip last year, after hearing my pleas, she requested a CT scan, and then a full body MRI, and then a bone scan and biopsy. It took months to finalise the diagnosis due to a series of red herrings (see curve balls like no ‘hot spot’ on my bone scan’) and the diagnosis was only given due to my persistence, my policing of my body and its changes. You see, stage 4 is a diagnosis slapped on your hefty file when your sneaky cancer cells have infiltrated a far-flung location outside of the primary site. Such cancer may not be detectable in your yearly scans and so it is your responsibility to truly get to know your body, to pay attention to how it may be attempting to communicate with you.
My secondary cancer is in my left hip bone and it is stable – meaning there is no active disease. The drug regime I am on is no doubt helping to keep the rogue cells in their place. I like to think of the treatments I receive as a hug of bear-like proportions, suppressing the cells’ movement and potentially even eradicating their potency. But medicine along isn’t enough to navigate stage 4 breast cancer and I believe I am not a passive victim in this process of healing.
Labels like ‘incurable’ are often speedily applied to individuals (not ‘patients’ please!) with stage 4 cancer. And yet, for me such a declaration of ‘fact’ doesn’t sit quite right. Stage 4 has meant a thundering wake up call to begin healing emotionally and spiritually – to address the potential causes for my inward turmoil. I target my disease with several additional therapies and actions to mindfully heal from the inside out: meditation, reiki, nutrition, gentle exercise and more. What’s so important is to acknowledge that those trips to the hospital target side effects of disease in your body but don’t necessarily focus on the root causes.
I do not possess any of the genetic mutations that are said to contribute to a greater chance of developing breast cancer. In many ways I see this lack of a definite answer as liberating. For me, it means I have limited potential to address my cancer, to look it straight in the eyes and surround it with love and healing intention. The silver linings of my current state are brighter than ever now: I am powerfully aware of the beauty and strength of my body, to hold me up, to heal, to propel me about my day and to facilitate the difference I seek to make each day at work amongst young people.
As a secondary school teacher, I have an endless passion for life and for helping others to embrace it too. I know I have so much more to give to this world and am now acutely aware of the value of each day. There is no lamenting the coming of Monday, no wallowing in self-pity or negative thoughts. Instead, I surround myself with what I envision as a golden sphere, receiving light and life in my quest to really live.
There certainly needs to be more for stage 4: more research, more funding, more awareness of the potential causes and signs. Individuals are still not being armed with enough information about their cancer’s ability to return. I hope that by being open and honest about my experiences that I can help alleviate some of the fear that come with any stage of diagnosis. Stage four doesn’t mean your life is over, for me it means it is truly, meaningfully beginning. I know myself so much more now, having become acquainted with knowledge about myself I may never have had. That’s why I feel it imperative that we spread messages of hope and potential, :you and I have so much more power than we are led to believe.
Last year, Lorraine’s partner, Richard, was diagnosed with stage four breast cancer. Finding a lack of support and awareness for male breast cancer, Lorraine has set up her own campaign, #bluegetittoo. Here, Lorraine tells us about Richard’s diagnosis, the impact that it has had on …
by Alejandra Solis, the Honest Cancer Mum
Diagnosed with Stage IV breast cancer with bone metastasis, February 2018. I am the mummy of two gorgeous kids, 8 and 5, and wife to a lovely husband. I write a blog honestcancermum.blogspot.com and share on most social media channels.
1.After the initial shock, life carries on
When I got diagnosed and heard the doctor say the words ‘you’ve got stage 4 breast cancer’ the world stood still, every horrible scenario went through my mind. I cried non-stop. But after a while I realised that actually life carries on, this is non-optional, it just does. I am a firm believer that the problem is never the problem, your attitude toward the problem is. I chose to be naively positive.
I took some time off to let it all sink in, be angry, cry etc… Then practical things needed organising: childcare, house work, kids need feeding, clothes need washing, house work needs to be done. In a way it’s exhausting but it also brings normality to your new life. Kids are amazing at keeping you going.
2.The cancer guilt is always there, especially when you are a mum
Kids have a funny sense of humour and a completely different way of seeing things. We decided to be straight with our kids. We told them what was going on. My 8 years old got it, and was sad and anxious but my 4 year old didn’t really get it and just said: “just rest mummy, you’ll be better soon”, which is what I say to her.
We have tried to keep life as normal for them, but kids are cleaver and they sense things. We are very open about it (not about the bone mets, this is too much to take on but about everything else). After all, it is our new normal, we are in for the long run and unfortunately, they are part of it.
My family is the reason to keep going. Being a good mummy and wife whilst my heart was breaking has been the hardest thing I have ever had to do.
3.Cancer is a party pooper
Every milestone is a bitter sweet moment. When you are a planner like me, it’s hard to know your long-term plans might have to be rushed a little bit.
We, as a couple have plans, and it’s scary and sad to know I might not be here. I really hope I am, but you just never know. So, we plan to live every day as best as we can.
The kids are the worst triggers. My little girl talks about her wedding and having babies etc, and I just hope I get to see the day. My eldest wants to be an artist and live in a treehouse with his best friend… I wonder what type of jobs they will have, what will they look like, will they be ok? Will my cancer affect them growing up? If and when I die, will they cope? Will my husband be ok? Oh it’s horrible, the uncertainty of a life sentence, for a crime I did not commit, just bad bad luck!
4.Being creative is a sword of two very sharp edges
2018 was a horrible year, especially if you have a big imagination like me, it’s hard to control your mind and stop it going to dark places.
I have planned my funeral, kind of. I know what I want, I have updated my will, I have spoken to my husband about it all. He was not impressed. It’s not something I am planning to do soon, and I am hopefully that oncology will eventually find a cure for it all, but if not… it will be a very nice big pink firework that spells ‘CIAO’.
5.You become THE cancer person
Even though I look the same and feel well, people do treat me differently. They ask ‘how are you?” with a different tone, they look at me like I am a wounded puppy.
I am very lucky to have a great support network. I can’t imagine going through everything without them. They been a shoulder to cry on or to laugh with hysterically. They have cooked, dragged me out the house, they even made me join the gym. It’s amazing what happens when women support each other. Raising kids takes a village, my village has been the best village ever, and I will be forever grateful for have amazing and family and friends.
6.You bring mortality to the people around you
Some friends have taken my diagnosis quite hard, some actually stopped talking to me for a while or tried to avoid me at the playground. One of them came forward after a while, and said she just couldn’t handle my diagnosis – she was gutted for me, but it also scared her. She said that if it happened to me, it could happen to her, or anyone at such a young age.
It’s true, before my diagnosis I felt invincible, I felt like my long life was guaranteed and I never ever though that the safe feeling would be taken away from me in a single 20 min appointment.
7.You become an expert in oncology
Since my diagnosis, I have read every article, every research published, every forum post, I joined Facebook groups, I talked to anybody that would listen, doctors, oncologists, nurses, other patients, I have contacted Oxford and other universities who are researching cancer, trying to find a cure, I have offered my diagnosis and to an extent my body to help them help me.
But at the end, my life is in the hands of my amazing oncologist, Dr M, who I trust and believe he has my back, literally! Finding an oncologist that gets you is important. Clicking is important. I know we will never be BFFs and go for drinks, mainly because he is possibly not allowed to, but I needed my oncologist to see me as a person, not a number. Placing my life in his expert hands is ok, although I like to be in control and I like understanding the decisions being made. And I like to think of myself as part of the team… after all, it’s my body, my life.