The Big What If?
What if? It's a question that I've often found myself asking and I try not to, because if you keep looking back, you can't move forward.
Upon my initial diagnosis I was directed by my GP to go to a particular surgeon, so being the obedient patient that I am and the fact that Doctor's are God, I toddled off to the surgeon she suggested. I later discovered that although he is a fantastic surgeon, he specialised in laparoscopic surgery (he also had NO experience with sarcoma resection, which anyone who knows anything about cancer will recommend you use a surgeon who has dealt with your type of cancer before) and is a minimally invasive surgeon. My problem is that with sarcoma, the type of cancer I have it requires aggressive surgery, it requires large "clear" margins (margins are the area of normal tissue surrounding the resected tumour, where "clear" or "cancer free" pathology is found, with sarcoma you really want at least 2cm or an inch of non cancerous tissue margins), this is trying to ensure no cancerous cells are left behind, so basically the more tissue you remove the higher the chance you're not leaving any of those pesky little bastards behind to grow, make love and multiply.
My surgeon suggested I had a GIST, a gastrointestinal stromal tumour (this is a "good" one to get, as it's a sarcoma the medical field know about and it also has a treatment drug called Imatinib in tablet form, a tyrosine-kinase inhibitor, which is good to take after having your tumour removed as it blocks the enzyme that allows cancer to grow, an added security blanket to help prevent the cancer from returning), which is a type of sarcoma, so any surgeon who has performed a sarcoma tumour (mine was 17cm by 11cm and 1kg in weight, attached to my stomach) removal should know that you need to take more out than less, be aggressive, remove more or all of the stomach, just take that asshole out and make sure you take it's little cancerous mates with it.
After waiting for 3 months for my pathology results, yes I had to wait for 3 whole months with my thoughts eating away at me. That 3 months was a daze, I basically walked around with this cancerous question mark hanging over my head every day, my oncologist had suggested after the tumour was removed that it may in fact not be a GIST, so I was also thinking what type of cancer will it be? They sent my tumour to the Mayo Clinic in the USA and they have a huge pathology database and they still couldn't find a cancer with my pathology.
Eventually I got results and they were basically inconclusive, I still remember that exact moment, I was sitting in a car park in the passenger seat, I saw the private number calling on my mobile and it was my surgeon on the other end. I could tell he was nervous, he proceeded to tell me it was malignant cancer and it was a nasty one, I just remember this huge lump forming in my throat and a feeling like the carpark was caving in below me, the first thing I asked was "am I going to die?" and he replied "I don't know", I DON'T KNOW, are you f*****g kidding me? We're in a day and age where we can pinpoint your location via satellite on an iPhone and you can't tell me if I'm going to live or die, what is this bullshit? I thought they'd already found a cure for cancer, hadn't they? Isn't Chemo a cure? I'm certain I saw something on TV the other day about mice and tumours and cancer, didn't I? For those of you that didn't know Chemo doesn't always cure cancer, some cancers are very Chemo reactive, others not so much, the only "cure" for my type of cancer is complete removal of the tumour with large clear margins and the chemo after surgery is really just to mop up any cells left behind, I think it increased my chances of survival by something like 7% or something as stupid as that, so it went from a 50% chance of cure to a 57% chance of cure if I proceeded with chemotherapy.
Pathologists determined my cancer had a familiar appearance to sarcoma, so they decided to call it an undifferentiated gastric sarcoma, sarcoma accounts for less than 1% of cancers diagnosed each year, so it's rare already, so mine is incredibly rare, in fact one of a kind, unique, just like me.
The surgeon then directed me to an oncologist at the same hospital and once again I followed his advice blindly and used the oncologist he recommended, I didn't question anything, I just did what I was told. Upon completion of chemotherapy, my oncologist recommended further surgery, they call this a "whoops" surgery, as he said I didn't have "clear" margins after my initial surgery (this was the first I heard of this, I was told I had "clear" cancer free margins) and once again I returned to the first surgeon and had more of my stomach removed and this time, the pathology came back as cancer free.
So my reason for this blog is to help educate you on what you should do when you first find out you have cancer.
If you are told what type of cancer you have (biopsy results, blood tests etc.), investigate different specialists who specialise in that particular cancer, when my cancer came back I actually visited 3 different oncologists and a couple of surgeons. When you meet with them question, question, question!!!!! First ask if you can record the conversation, when your speaking with the oncologist, you are already in a daze, so your most likely not going to be listening properly, they will use big words and words that you've never heard before, so recording the conversations allows you to sit back and review it and absorb it. Take a list of questions into the consultation with you, because when you get in there you will forget most of them, your emotions are on high, you're still in shock, so it's great to have them written down and tick them off as you go.
What type of questions should you ask? What kind of cancer do I have? Do you specialise in my type of cancer? Can I be cured? What stage is it? Is it localised or has it spread? Is it a common cancer? What treatments if any do I need to have? Will the treatments improve my chance of survival? Are there different treatment options and if so what are the pros and cons of each? Where will I have treatment? What are the side effects of treatment? How long will I require treatment? Are there any clinical trials and if so would it be worth it for you to try one? Are there any things you recommend getting done before treatment, like freezing of eggs or there is apparently a needle that you can have that helps prevent menopause (this is something I wasn't made aware of) for women during Chemo? Are there long term side effects? Are there any costs involved? Do you have any literature or statistics about my cancer? Is there someone I can talk to such as a counsellor or even a person who has previously had this treatment or cancer? What is the best case scenario and what is the worst case scenario? These are just a few questions that you should ask of potential oncologists, these questions can also be asked if you need to speak with a radiation oncologist. As I said, recording the session is very beneficial and most importantly DO NOT feel railroaded into choosing a particular oncologist, just because your doctor likes them, doesn't mean they're the best fit for you, remember you're going to be having a very personal relationship with this person, so apart from the fact that you want them to know what they're doing, you want to feel comfortable talking to each other, you should be able to tell your oncologist ANYTHING! This is not like buying a dress, you can't return bad or incorrect treatment, this is your life and this person literally holds it in their hands, so it's imperative that you feel safe and comfortable with them. I cannot stress enough it's not like choosing a hairdresser, although I know on the scale of importance a good hairdresser rates very highly, as too does a good eyebrow waxer, but unlike hair, your survival will not grow back, you need to make sure you come ready to fight and in order to do this you have to have a fantastic support team, a medical entourage if you will.
Information is also one of the best weapons you can take into your pending cancer fight, so ask for up to date information from the cancer council, from your oncologist, from your cancer centre, Google "safely or sensibly", some people like to know nothing, they just leave it all in the specialists hands, that approach doesn't work for me, I need to know all there is to know, but at the end of the day whether you want to know or not, it's your decision, we all handle things differently, don't let anybody tell you how you should handle this, this is your story, tell it the way you want.
Depending on your cancer you may also require a surgeon and as I mentioned earlier, it is hugely important that you ask the right questions,to get the best surgeon for your case, you have to remember that although many cancers have the same or similar pathology, every case is still individual and you want your surgeon to treat you as that, an individual. Most of the questions above can be applied to surgery, but you need to ask things like, Do you specialise in this type of cancer surgery? How many of these surgeries have you performed successfully and otherwise? Have you seen my specific type of cancer and positioning before? What type of surgery will you be performing? How long will you be in surgery? What are the risks of the surgery? Will there be any long term effects after surgery, such as will you need a colostomy bag, will you lose a limb, will you lose an organ? Do you have to have surgery? Will you be performing the surgery (quite often people visit a surgeon and then when they're operated on, it is one of the registrars that actually performs the surgery, so if you want them to specifically do it, then make sure you confirm that they're performing it) and if not you who would be? What effects should I expect after surgery? How long will I be in hospital? How long will my recovery take?
I don't want for you to be in the position I was in, where I just rushed into everything and didn't investigate anything. Doctors will tell you NOT to google, I agree that you can be misled by Google, but it can also be an effective tool in your cancer treatment. You can google specialists, surgeons, trials, cancer descriptions and much more, but be aware, you google cancer, you're going to get some hairy results, so be open to that, if you're not prepared to see things you don't want to see DON'T DO IT!!!!!
This is your body, more than that, this is your LIFE, cancer is not a game, I know when you're first diagnosed everything feels urgent and sometimes it is, my cancer needed to be treated ASAP, but I still could have looked into different specialists and treatment options. Give yourself a couple of days to let it start to sink in and look into different specialists and treatment centres, maybe speak to someone you know who's had cancer and get their advice, look at chatrooms in relation to your cancer, Cancer Council Australia is a great place to start, they have so much advice and they also have a find a specialist section http://www.cancer.org.au/about-cancer/find-a-specialist.html.
"You have cancer", are three of the scariest words you could ever hear, so allow yourself to freak out, allow yourself to scream, cry and hate the world, but then you need to put your big girl/boy pants on and face this beast head on, get the best team members you can get, to win the most important game of your life, you have to feel confident that the people in your team are the best for you and they all have one end game and that is your survival, don't end up like me asking "What if?".
My name is Lisa Magill and I have been navigating the minefield that is cancer since just months after turning 30, people have been saying to me for years that I should put my thoughts into writing and as time has progressed I thought I had left it too late, well here we are nearly 4 years in and for some unknown reason I've decided to start to write today.