What to do when you are diagnosed with a brain tumor
Well your first thought is probably going to be 3 words that start with WTF. Unless you had an intuition something was wrong, but even then it will still most likely come as a shock. I had headaches, anxiety and brain fog almost half my life but I also was a normal person with stressful situations like horrible boyfriends, jobs I hated, high school stress, college, exams, and trying to figure out life. I also was very good at partying so half my headaches I assumed were from drinking too much and not sleeping enough. I had seen doctors for my headaches and anxiety but they always just prescribed me meds and said it was normal. Never did I have a CT or MRI scan done though, which now thinking would have been interesting because most likely they would have discovered a small tumor in there. Now you are probably thinking wait…I have these symptoms do I have a brain tumor!?!? Here are some signs to watch for and just be aware. It's your body and no one knows your body like you so just stay aware and if something seems off and is happening consistently go see your doctor.
Headache: can be persistent or severe
Muscular: difficulty walking, muscle weakness, problems with coordination, weakness of one side of the body, or weakness of the arms and legs
Whole body: balance disorder, dizziness, fatigue, or vertigo
Gastrointestinal: nausea or vomiting
Sensory: pins and needles or reduced sensation of touch
Cognitive: inability to speak or understand language or mental confusion
Speech: difficulty speaking or impaired voice
Also common: blurred vision, personality change, seizures, or sleepiness
My tumor as many of you know now was found after having a Grand Mal seizure in January 2016. This is how many people discover there tumors.
Now, here you are in the hospital scared out of your mind waiting for the Dr. to come back in with the results and you find out you have a brain tumor. Now what!? First thing is to find a Neurologist. Wherever you ended up after the seizure or at your regular Dr. do your research in the area you live and find the best Neurologist you can. From there they will do an MRI and let you know their opinion of the tumor size, location, type they think it may be and what your options are for treating it. There are many many things that can happen here but take notes and then move on to an expert. Even with the experts advice I suggest getting a second or third opinion. If you live in California or are able to travel to California without a doubt I recommend UCLA and Dr. Linda Liau for surgery. If you are not please feel free to reach out as I know other States that have amazing surgeons and neurology teams as well.
Now this is easier said then done but don't freak out and don't search the internet and try and diagnosis yourself because what you will see will scare you and make you panic. You will read a ton of negatives like life expectancy, #'s of things that don't pertain to you, everyone is different, no one is the same, no tumor is the same and research and treatments are changing and becoming so promising!!!!!From surgery, treatments, meds and all the holistic things patients can do now there is hope and so many options!!! Find a good doctor, get comfortable with what's happening and find support ASAP. I am here for you!!!! Email me, friend me on instagram or facebook, I won't think you are weird I will think you are brave!!! And Brave is exactly what you need to be right now!!!!! I mean come on you just found out you have a brain tumor and not sure what is going to happen but I promise you it will be ok, it will work out and stay positive!!!!
Once you have found a Neurology team and possible Surgeon here are questions I recommend asking. Print this out or write them down and ask every single one. It's all about your gut feeling at the end of the day. Go with how you feel. Bring someone with you, at least 1 person or better more so after the appointment you can all discuss your thoughts. You are the patient, you are in charge and you are doing the hiring!!!! They will be working for you. So hire wisely! They should make you feel comfortable, confident and at ease that the future is going to be great! If they seem to be negative or lacking in confidence MOVE ON! If you are finding out for the second or third time you have a regrowth I also suggest getting another opinion or three. I wish I would have after my first surgery and feeling uneasy and not super confident in my Oncologist and that is why I cannot stress this enough on your gut feeling and the confidence of the doctor. I should have fired my last oncologist a LONG time ago!!!!! So please don't make the mistake I did! Just because he works at "this Hospital" and has "these degrees" and seems to know what he's doing and keeps giving you "good" news you just have to trust what you feel.
Questions when you are told you have a brain tumor:
1) How big is the tumor?
2) Where is the tumor located? (the right and left side make a big difference in everything)
3) Do you have an idea what type it could be?
4) How did I get this and do you have any idea how long it could have been in there?
5) Do I need to worry about getting seizures or any more side effects because of this?
6) What do you suggest I do next? Who would you recommend for a surgeon or oncologist?
Questions for treatment to your oncologist: **If the tumor is inoperable or small enough that treatments could be done instead or first to try and shrink it down
1) How common is my tumor and how many have you treated like mine?
2) How do you feel about trying holistic approaches first? Or in conjunction with traditional treatment?
-Ketogenic diet, Cannabis oil, Frankincense oil, Budwig protocol, Supplements and herbs such as turmeric, garlic, curcumin, low dose naltrexone
Depending on what they suggest in the first place. Which will most likely be Radiation and a pill form of Chemotherapy. Now they will never and can never tell you to do holistic over traditional treatments but if they are open and at least suggest it cannot hurt and they see many people doing it alone or in conjunction with traditional treatments then I take that as they are open to it, have seen results and that is a positive thing!!!! Your decision at the end will come with your confidence in them and the rest of the neurology team. Like I said everyone is different, every tumor is different and either way I suggest you do the above holistic approaches! I am on my second surgery and this time around doing all the holistic approaches and will continue to do them while doing radiation and chemo and will also continue them for the rest of my life to hopefully keep this tumor small and steady and from ever continuing to grow.
3) What are the side effects of radiation and chemo? Short term? Long term?
4) I want to start a family one day, will this effect that?
Questions for surgery to your surgeon:
1) How common is my tumor and how many you have resected like mine?
2) How many surgeries do you do a week?
3) Why did you decide to become a neurosurgeon? I ask this to feel them out and see how they respond. This gives you a better idea of them as a person rather then just a surgeon which is their job.
4) How long does surgery last?
5) Can you explain in detail how the surgery works? (If you want to know haha I'm a curious person)
6) How big is the tumor and how much do you think you can remove?
7) What are the surgery risks and side effects?
8) What are the future risks and side effects I can expect to have?
9) How long do most of your patients stay in the hospital for after surgery?
10) How long do you suggest waiting until surgery?
Now you have met with a few surgeons, oncologists, neurologists and asked the questions. Sit down, let it sink in and go over everything you just learned. This is the first step and after this you keep going and doing what you have to do in order to stop this tumor from growing back. It's a process and yeah it totally sucks but you are not alone! You CAN do this and you WILL do this. There are also tons of support groups I am part of online and on Facebook so feel free to reach out and I would be happy to add you to them!! Stay calm, positive and know it will work out!!!!!!
For more information on causes and symptoms check here at https://thetruthaboutcancer.com/causes-symptoms-brain-cancer/