Hello everyone. I am new to this so please bear with me. I had stage 2 Nasopharyngeal cancer and had an operation (TORS) to remove it last November. Was told I was cancer free after 5 weeks in hospital and eventually sent home with a PEG. After 2 further Biopsies they have now found more at the back of my Larynx. Have been given 2 choices, a Laryngectomy or Radiotherapy. Again it is at stage 2 and they have told me they are confident they can remove it all. After a major surgical error fitting the PEG and going through unimaginable months of pain I am at a loss as to which road to go down. So much so I have even considered no treatment at all and just Palliative care. I have to make a choice next week. My mind is all over the place and I just do not know what to do for the best. Chatting on here might help. Thanks for reading this.
So sorry Peter to hear your news.
My first husband had a laryngectomy in 1987 and he coped exceedingly well. He had a voice prosthesis inserted into his stoma and had an excellent voice. There’s no doubt that it’s life changing but he honestly did very well.
He had radiotherapy first and that failed. It made surgery very difficult but you have to consider that RT was much less targeted in those days and there was more collateral damage.
There have been a few folk here who had it successfully though but I don’t know if they are still around on the forum. Our other two Champs MikeO and chris2012 are both laryngectomees and I’m sure will be along soon.
I hope you can get some help arriving at a decision
Dani
Base of tongue cancer. T2N0M0 6 weeks Radiotherapy finished January 2019
Hello Peter, my story is a little different to yours but I've had radio/chemo as well as a laryngectomy so will just tell you briefly how it was for me.
When I was first diagnosed, in 2013, I wasn't given options; it was just neck dissection followed by seven weeks radio and chemo. This is absolutely not an easy option, as I'm sure you've been made aware; but there are any number of us on here who've successfully done it, been cured and gone back to a kind of normal, battered and bruised for quite a while admittedly, but living full lives again.
When I got the short straw, in 2020, with the cancer coming back on my larynx I again had pretty much only one option, which was a "salvage" laryngectomy (meaning a laryngectomy on someone with radiotherapy damaged tissue) with a pectoralis major flap (healthy tissue taken from the chest to rebuild the throat) and consequently becoming a "neck breather".
Palliative care was also given as an option, and I did in fact talk to the doctor who'd have provided it, but didn't give it much thought. First, I was only sixty so not ready to give in; and second, my wife died totally unexpectedly exactly four days after my diagnosis, and as they reckoned I only had six months going untreated it would have been too much for our kids and grandkids to take to lose us both in such a short time.
As to your choices, if you opted for the laryngectomy then it's a considerably easier operation on healthy tissue than it is on a RT damaged area (my surgeon described it as "trying to sew cardboard together"), you'll doubtless be given a tracheoesophageal puncture into which a voice prosthesis can be fitted so your speech, with practice, will be good....you'll even keep your accent if you have one. Again, in my case, due to the damage I have no voice at all, which I'm totally comfortable with now. You'd also, I'd guess, still have the radiotherapy option down the road if, god forbid, it came back a third time.
If you go with the RT there's every chance of success and cure and you keep your "real" voice, but it's not, as I said before, an easy path.
Plainly nobody can tell you what's right for you, that's your choice after gathering as much information as possible, and your age and general health outside of cancer might play a part too.
Personally, I think if you can live with obvious life affecting consequences, the laryngectomy would be the "easier" option; but RT might well cure you, albeit in a somewhat brutal manner.
Just make a choice that you and yours are happy with based on the information you have, and feel free to post/vent/ask anything on here at any time, or chat with Macmillan on 0808 808 0000. Wish you the very best.
Metastatic SCC diagnosed 8th October 2013. Modified radical neck dissection November, thirty-five radiotherapy fractions with 2xCisplatin chemo Jan/Feb 2014. Recurrence on larynx diagnosed July 2020 so salvage laryngectomy in September 2020.
Good evening Peterm, please do not let your previous surgery put you off as I'm sure it was a one of the problem, i know what its like for it to return as i had 3 surgeries in three years in different areas of the head and neck, the last one was having a total laryngectomy (2010) where my larynx was removed and since then i have been cancer-free so just maybe they will be able to do the same for you. It does quite a while to adapt to but if it gives you a good quality of life then its worth thinking about. You will not be in any pain once you recover from the operation, in fact, i would say the first two/or three weeks were the worse when its nil by mouth and the trachie is put in to keep the hole in the neck open( stoma ) . But once this initial recovery period is over i never had any bad pain and found everything settled down fairly pleasantly.
I think you have to think about your age and how healthy /fit you are and weigh it up against having the operation, i never gave up and always went with what my consultant recommended mainly because i had children at school and a wife to bring into the equation. Thankfully they managed to get me back on the right road, ok i cannot speak but its not the end of the world.
If you opt for radiotherapy and it cures it all well and good but if it fails then the operation would have to be done, i know its a difficult choice for some people especially if their confidence is down from recent events. I wish you all the best and hope you make the right choice that suits you, take care.
Chris
Its sometimes not easy but its worth it !
