Hello, newbie here.

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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:

  1. A full parotidectomy, which carries a risk of permanent facial paralysis.
  2. Radiotherapy, which carries various risks.
  3. No further action, but frequent MRI's to keep an eye on it, as it's a slow growing type.

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  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 

    Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm

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  • Hi welcome from me. It’s. Difficult decision to make I’m 6 years on from cancer radiotherapy and 2 chemo. Dani’s given a great synopsis I’ll just add radiotherapy is a one time treatment once the areas had radiotherapy you can’t have it again. I know a few who struggle with mri but a mild sedative gets them through it. You could always  turn the question round to consultant and ask him what would he or she advise if it was their partner. 

    Im  living a great life with very few side effects a dry mouth at night which. I can cope with.

    Best wishes

    Hazel 

    Hazel aka RadioactiveRaz 

    My blog is www.radioactiveraz.wordpress.com  HPV 16+ tonsil cancer Now 5 years  post treatment. 35 radiotherapy 2 chemo T2N2NM.Happily getting on with living always happy to help  

  • Hi Vegan

    Rock and a hard place....I had 30 sessions of Radiotherapy and  4 of Chemo....tough gig ....took months to recover....a year on I'm doing pretty well...still improving.

    Cancer is a hard fight.....I'm pretty sure your oncology team will help you make the right decision.

    Take care and best of luck

    Peter

  • Thanks Dani. Another reason the wait and see option is no good for me is that I'm planning to relocate to a different part of the country next year, which will take me out of the catchment area. My consultant is in favour of the operation, so he must be confident that he can do it. Obviously, he's leaving the decision to me.

  • Thanks Hazel. My consultant is in favour of the operation, he's advised of the risks and says that ultimately it's my decision. I can cope with the MRI, but as I'm planning to relocate next year, this is something I want done and dusted.

  • Thanks Peter. That's tough, well done on getting through it. I'm very lucky that I don't need chemo, and that I have a slow growing tumour. Hope you're continuing to do well!

  • Good luck. Our surgeons are all exceptionally good at their job and having trust in them is crucial. Let us know how you get on HUGS

    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 

    Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm

    Community Champion badge