Recently diagnosed with Lip Cancer

[NJA82]

Hi everyone,

Surreal to be posting in this forum but I recently got diagnosed with a low grade Squamous Cell carcinoma on my lower lip. The worst part is the doctor really did not discuss much with me and instead referred me to a plastic surgeon (appointment is on 10 May, approx 2 months from originally seeing the dermatologist) and told me that the report said simply "early stage, low grade SCC, appears non invasive and options are wait and see or surgery. He pushed me for surgery (no brainer, I did not object).

The worst part is the waiting. Being my worst enemy and googling it, I have since discovered that this is a potentially life threatening type of cancer and the chance of spread is real.

Have struggled mentally since this diagnosis and not knowing what is going to happen from here, whether it has grown, spread etc. the other side of my lip has been really sore lately and despite being given the all clear on a skin check and dental exam, it's impossible not to freak out and be completely paranoid.

I turn 40 in August and have a 15 month old daughter. My wife has been super supportive but she doesn't really know what to say a lot of the time. I worry for them more than anything.

I realise that this is probably a really minor diagnosis but it still feels really scary nonetheless and I have struggled immensely since this diagnosis. 

[Donotbeafraid]

Hi Njia82,

I totally understand what you are going through. I felt the same when I first heard my diagnosis 2 months ago. But I quickly leant how to gain the control of my life back and things are working well and now I am in a position to share my experience even.

First of all, try to think positive. Especially according to your description, yours is early stage and low grade. If you take the right measures now it is not going to spread! There is surgery, there are new treatments like targeted drugs and immunotherapy that are highly successful. I have relatives who had surgery and chemo on breast cancer and is living and healthy for many years. If you find waiting is hard, you can ask your GP to refer your to several surgeons and see which one can see you quicker.

I tried not to Google too much, only to understand the basics, because if you go on researching too much, you will find so many things that might scare you to death. When people are scared, their immune system will be weak or depressed and then their bodies will not have the ability to naturally kill the cancer cells. Normal people all have cancer cells, but usually their immune cells can kill them, only when stress or unhealthy lifestyle happens, some cells mutate and do not die as usual but uncontrollably grow instead. So now is the time you look at your diet, your mood, your lifestyle (if you are exercising and sleeping enough) and see how to make the change for the better rather than being scared which will only make things worse.

I was also comparing myself to those people who lost their lives in accidents, bush fires or even the recent floods. We are so lucky already to be alive and there is still treatment and so much hope! Cherish what you have and live each day to the fullest, that's the best we should do!

I also tried to live my life the normal way (but eating more healthy) rather than making dramatic changes, it made me feel there was not really a big life changer and made me peaceful. 

Above is my own experience, I hope it will help you. I also understand each person is different, so what works for me might not work for you, but I do hope my tips can at least help a bit.

Best Wishes,

[Donotbeafraid]

Hi Njia82, there are several tips I want to add:

1. If you want to see a specialist/surgeon earlier but can not get an earlier appointment, you can get your GP to call them instead and that will make a huge difference! I wanted to see a dermatologist when we first suspected cancer and could only get appointments weeks down the track after trying with several dermatologist offices. One receptionist suggested my GP to call them instead and that secured me an appointment the Wednesday next week! The dermatologist could perform biopsies right away on the appointment and that also certainly bought me time. Yes, timing is essential as the early it is detected the less treatment you will need and the better your recovery is. When biopsy result comes back, check it right away and make appoint with a surgeon or medical oncologist right away!
2. If you are really worried about spreading risks, maybe ask your GP/specialist to prescribe a whole body PET SCAN which can show where tumours are. If there are no uptake of radioactive sugar in other parts of your body, there should be no need to worry. My surgeon prescribed the test after seeing me the first time and it was bulk billed. Not sure if it is also bulk billed if your GP prescribes it but you can find out. Having the scan earlier can speed things up and give you answers and peace of mind as well.
3. I think doctors sometimes do not talk much as they do not want to scare you. My surgeon did not talk about much about side effects of the surgery and told me it will only take 2-3 weeks to heal. It’s taking longer…but no big deal. Not talking much does not necessarily mean your condition is bad or they do not want to inform you. Experienced doctors know how to balance their talks to give you information at the same time not to scare you.
4. When you are doing research online you may find a lot of things that might not apply to you but will scare you only. Yours is most likely stage 0 or 1 or 2, which means it has not spread to other parts of your body, you may only need surgery and do not need chemo or radiotherapy or even immunotherapy. So reading about the possibility of spreading or having these treatments and the horrible side effects that they might bring will only make you scared. When a person is scared, his body will produce adrenaline which prepares the body for fights and his immune system will be suppressed. This is the time we need our immune system the most, so make sure you do not worry and develop an positive attitude towards healing. Thinking about what things make you relax in the past, is it music, is it good food (make sure not sugary food as cancer cells love sugar), is it meditation, is it Taichi, is it exercises, is it talking with friends… Do all of those things that helped you in the past and discover new ways to make you relaxed and sleep well.

For nutritious recipes , you can go to CANutrition.com.au or search for some dietitians' websites. Looking for these healthy living resources will keep your mind away from thinking about the negatives as well.

1. There are several free telephone support lines such as Beyond Blue, Lifeline etc.. You can call to just talk with someone and get things off your mind when you need. If you want a more in-depth consult, your GP can give you mental care plan letter for free psychiatric services if he or she finds you eligible. With this letter, you get 20 free or discounted  psychiatric services depending on which psychiatrist you go to. There are psychiatrists that specialize in cancer patients support but can be a bit pricy and a long waiting list, like Headwayhealth, Mindmyhealth. I am using Goodminds.com.au and they provide no-gap services with mental care plan letter.
2. No need to worry about your finance. The government pays towards consultations, scans and treatments, though sometimes only a portion.

I think my message to take away is -- actively focus on healthy living and do not think about the negatives. There is SO MUCH support and help out there, if you just open your eyes and heart to look for them.

Send my best wishes to you,

DO NOT BE ARAID!