The Cancer Series by Aija Lejniece: Just Got Diagnosed? Here Are 6 Things You Should Do First
On 18th October Aija Lejniece was my guest speaker for a very special Female Counsel event. One in support of breast cancer awareness. Aija spoke to us all from the heart and shared her own very personal experience. She has written a blog which I am so happy to share here with my network. Please do read and spread the word.
The Cancer Series: Just Got Diagnosed? Here Are 6 Things You Should Do First
Ever heard this one? A rabbi, a priest and an imam walk into a bar… Only instead of three godly men, it’s you, your mom and your gynecologist, walking into the examination room. Tough luck, your gyno says – you only just turned thirty-one, you have no family history of breast cancer and I thought that thing in your boob was just an infection, but turns out it’s super aggressive cancer and you needed to start chemo last month.
Three years ago, I was the butt of that joke. It was actually almost funny at the time because I had fallen off a horse and fractured my hip two days before being told I had breast cancer, and I somehow thought that karma had had enough fun at my expense and would leave me the fuck alone. Lolz. Nope!
Being slapped in the face with a cancer diagnosis (or pretty much any serious diagnosis) is not easy. In many ways, it’s an absolute shock. It’s like suddenly finding out that instead of an ordinary (if somewhat beefy) boy from Kansas you are actually an alien sent down to Earth in a spaceship because your dad’s college roommate-turned-dictator-wannabe launched a coup (here’s looking at you, Clark Kent). Part of the reason I think a cancer diagnosis is so shocking is that it’s this new absolutely fundamental and infinitely important thing about you and you’re the last one to know – after some lab technician who analyzed your biopsy, after your gyno, hell, even after your gyno’s secretary who received the results. They all knew before you did, but now you’re the one who has to deal with it.
All of this can be extremely overwhelming. You may go absolutely numb or immediately have a gazillion questions. Where to start?
Here are the six things you should do when first diagnosed with cancer.
1. Deputize someone
The first thing you need to do is deputize someone. The dictionary definition of ‘deputy’ is ‘a second in command or assistant who takes charge when their superior is absent.’ And believe me, however on tip of things you usually are, you will most definitely be absent for some (if not most) of the time right after being diagnosed - there will be too much information to process and your brain will freeze. Pick someone (or several someones) to accompany you to important doctors’ appointments for the first few weeks or even months.
If you have had a biopsy and are about to receive your results, bring someone with you for the follow-up appointment. Apart from needing emotional support (or sometimes physical support in the form of being picked up off the floor or getting a good tight hug), your doctor is going to give you a bucketload of new information, some of which needs to be acted on quickly. It is very likely that you will be in a state of shock, so it’s absolutely normal that either a part or the entirety of your brain will go offline, and it will be extremely helpful if there’s someone there to do the clerical and note taking work for you.
The same goes for the first slew of your post-diagnosis appointments, of which there may be maaaaaany – putting in your chemo port, PET scans, MRIs, fertility consultations, chemo, radiation, etc. You don’t have to continue bringing someone with you throughout your treatment if you don’t want to – honestly, once you’re a couple of months in, you’ll feel a lot more chill and used to it. But you will inevitably space out at the beginning, which is perfectly fine and understandable, and that’s why you need an assistant.
Make sure your deputy is someone who is independent, rational and keeps their cool in stressful situations. Under NO circumstances should you bring anyone who will try to divert attention onto themselves (hopefully you will not personally experience this, but a lot of cancer patients have at least one individual, let’s call them a ‘Karen’, who tries to make the cancer about themselves, instead of the cancer patient by crying and acting super distressed, as if it were happening to them – you definitely don’t need that).
2. Find out exactly what’s going on
One of the most disconcerting things about being diagnosed with cancer is how powerless and out of control it makes you feel. A good way of feeling more in control over what is going on with you, is to be well informed. When discussing your diagnosis with your medical team, gather as much basic and useful information as you can. Find out what type of cancer you have, where it’s located, whether it has spread, what is the recommended line of treatment, what you can expect in terms of a treatment timeline, etc. Being informed about your cancer will give you agency over the process.
I am aware that all of this is scary, and that some people may only want to know the very broad strokes of their diagnosis. While I understand this approach may be tempting, unless you have someone competent who cares about you and whom you absolutely trust to make decisions for you, you should try to learn and understand as much as you can about your diagnosis. Trust me, knowledge is power – not only will you be able to take informed decisions about your treatment, but the treatment itself will also be a lot easier to handle if you understand what’s going on and side-effects don’t take you by surprise.
3. Get a second/third/fourth opinion
One of the main factors in the success of your cancer treatment is going to be your medical team. Now, you may be completely happy and comfortable with the oncologist first recommended to you (by your GP, your gyno etc.), but I would suggest seeing someone else for a second or third opinion, even if it is merely to confirm the first doctor’s diagnosis. My oncologist was someone that my gyno worked with all the time and luckily it was love at first sight (what’s there not to love about a tiny cute Tunisian Jewish doctor?), but even so, I still consulted the head of the breast cancer clinic at another hospital.
The earlier you start treating cancer, the better the outcome, so you want to make sure that you get the best possible treatment protocol from the get-go. Tell the doctor treating you that you are seeking out a second opinion. A) it’s totally ok for you to do that, and B) your doctor will know that you are keeping them accountable. Should the doctors you consult have differing opinions regarding your diagnosis or the best line of treatment for you, feel free to ask them to connect and discuss your case – medicine is a collegial profession, and your doctor should have absolutely no problem reaching out to a colleague to confer on your diagnosis or treatment plan. Always remember that while you are not a doctor, you do have agency and are well within your rights to seek out the best treatment for your condition.
4. Decide what to do about your fertility (feel free to skip this one if you are menopausal, or already have kids and don’t want any more, or are just super sure you don’t want to procreate)
Depending on the type of cancer you have, the treatment you are going to receive, your age and other health factors at the time of diagnosis, your fertility may be affected (i.e., you may become less fertile or straight up infertile or menopausal). If you know you want kids one day or just want to keep your options open, you need to consider fertility preservation as soon as you get diagnosed because many of these methods can only be employed or work a lot better before beginning treatment or at the very start of treatment.
Luckily, a lot of methods are currently available for girls and women in this situation, including egg and/or embryo freezing, ovarian tissue preservation, ovarian shielding and many more. Consult your doctor about the risk to your infertility and what preservation methods are recommended for you.
I believe that if it does not pose a massive additional risk to your health and if it’s financially possible (thank you, French healthcare!), undergo every fertility preservation procedure possible. Even if you are in your late thirties and the effectiveness of these procedures is a lot lower than if you were in your twenties. I’m not saying this because I think everyone should have kids and that women only 'find themselves' once they pop out an infant – I’m not even a hundred percent sure I’ll ever want kids. BUT – I knew that if in eight years I suddenly wanted to get pregnant and couldn’t, I would blame myself for not having done everything within my power to preserve my egg basket. (Yeah, I know it wouldn’t reeeeeallly be my fault even then, but I’m a type A perfectionist and blaming myself would be totally within my modus operandi). So, I did both egg freezing and ovarian tissue cryopreservation. Now, if ever I decide I want to get pregnant and it doesn’t work out, I will be a lot less tempted to bang my head against a wall and blame myself.
5. Delegate what you can
Time is often of the utmost essence when you are diagnosed with cancer. My breast cancer type was HER2 positive, meaning that my cancer cells were basically feeding on a protein called the ‘human epidermal growth factor receptor 2’ (or HER2), making it fast-growing and very aggressive. In addition, my cancer was also inflammatory, which is rare. Inflammatory breast cancers tend to grow and spread much more quickly than more common types of breast cancer. All of this meant that by the time I was diagnosed, I needed chemo super urgently (I was diagnosed on Monday and started chemo Friday afternoon). I needed to act FAST.
When you have just been diagnosed, your main focus has to be on making sure that you receive the correct and best cancer treatment as soon as you can. This is one of the times in your life when you are not only entitled to but required to take care of yourself first. When it comes to your other responsibilities (work, PT meetings, the neighborhood watch, a business pitch, literally whatever) – unless a specific activity brings you crazy joy and/or will keep your stress at bay – delegate it to someone else and don’t feel bad about it.
I know that for a lot of people it’s hard to let go, you want to be on top of your obligations, not let your colleagues/friends/family down, but you are the most important element in the equation at this point. In five years, what will matter is not who baked the cookies for your kids’ school bake sale or who sent that pitch to your client – what will matter is that you are alive and well.
6. Surround yourself with people
Now, this may be a tough one if you are an intensely private person. I am definitely not one of those (as this blog and my Instagram can attest, lol). I am not a fan of hiding big things in my life, I am pretty much an open book with my friends and also like sharing my experiences with strangers. So I went a little overboard – almost immediately creating a massive Whatsapp group with over thirty friends, telling everyone what was going on, sending regular pictures and updates.
You will be surprised by how much people will be willing to do to help you. In the first weeks after my diagnosis, I had a near-constant rotation of friends and acquaintances coming round to my house bringing food and flowers, sending me lovely messages and volunteering to help. Plus, if I was feeling super down, all I had to do was send a message on the group and I knew that someone would be there for me.
When I say, ‘surround yourself with people’, I don’t mean that you should invite every single person you know into your life. But do pick a select group of people that you can lean on – for some it may be two, for others it might be twenty. The main thing is that you have people you can go to when you need help or just want to talk. Trust me, being a cancer patient is a lonely enough experience as it is. Don’t make it any lonelier by purposefully isolating yourself even more.
I hope these tips were helpful! Like and share on this post if you enjoyed it, and let me know if you have any questions or if you want me to share my experience with egg freezing and ovarian tissue conservation.
DISCLAIMER Please consult your doctor regarding your health and the topics evoked in this post. I am not a medical professional and can only share my experience as a breast cancer survivor.
This article was written by Aija Lejniece, a guest speaker for a very special Female Counsel event in support of breast canceer awareness.
You can read the original article below.
© The BONVIVANTE and used here with permission.