I never imagined the day would come when I would need support for cancer, but here I am.
I have Mucoepidermoid Carcinoma, which is a rare type of salivary gland cancer. The tumour first came up in the New Year of 2013, and the hospital I was under referral with (I won't name and shame) eventually told me it was benign, and not to worry about it. As I've been completely asymptomatic, no-one made the connection that it could be cancer.
A couple of years ago, someone at work noticed the lump in my neck and I made up my mind to get it sorted once and for all. I had a superficial parotidectomy in April this year after numerous scans, biopsies, ultrasounds, and x-rays. At first the consultant thought it might be a TB related bacteria, and even tried medication. After all options had been exhausted, he gave me the option to have it removed which is what I'd wanted all along.
A CT scan has confirmed the cancer hasn't spread, but part of the tumour is still there. My wonderful consultant has offered me three options:
Option 3 is off the table, I hate MRIs, and the prospect of having to have one every few months is just a no-no.
My next appointment is on the 25th July, which will be decision time, so I have a few weeks to think about it.
My consultant is in favour of the full parotidectomy. I feel very safe in his hands, and the level of care I've received from him and his team has been second to none. But all surgery carries a risk and there are no guarantees.
I'm leaning towards radiotherapy, but that could means weeks of feeling unwell, not eating, diarrhoea, skin damage, and the potential to develop cancer elsewhere in the body.
Because I've been asymptomatic, and because the cancer hasn't spread, I feel like a bit of an imposter, but I'm faced with a pretty monumental decision.
Hi Vegan Queen welcome but sorry to see you here. You certainly have some choices to make but can I just share my RT experience with you
I'm leaning towards radiotherapy, but that could means weeks of feeling unwell, not eating, diarrhoea, skin damage, and the potential to develop cancer elsewhere in the body.
I had six weeks of radiotherapy across 2018/19. I made a perfectly good recovery even though I had both sides of my neck treated ( for a different cancer than yours) It’s painful there’s no hiding that but proper analgesia is key and is a game changer. I was pretty miserable for a couple of months but I’m well and cured.
Ye you will feel unwell and might not be able to eat but it doesn’t last long. Diarrhoea? Maybe while you are on replacement feeds. Feeding would need managing with your dietician as I presume you are vegan but it’s not insurmountable. Skin damage is often minor providing you moisturise fanatically. Other cancers? Odds are pretty long.
All these things you mention are temporary as opposed to lifelong Facial Nerve damage … as you have concluded.
Which brings me back to watch and wait. Can you not get through an MRI with a sedative? It might put off the day when you need RT maybe Indefinitely?
Dont know if my post helps or not but good luck.
Dani
Base of tongue cancer. T2N0M0 6 weeks Radiotherapy finished January 2019
I wrote a blog about my cancer. just click on the link below
https://todaymycoffeetasteslikechristmasincostarica.com
