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Deciding whether to have a laryngectomy

Deciding whether to have a laryngectomy

Posted by jessicas on Oct 27, 2020 2:26 pm

My Dad (67 y/o) has been recently diagnosed with two types of cancer - one at the back of his tongue (in his throat) and one on his larynx.

He has previously been treated for larynx cancer in 2009 through radiation and chemo. He was told he was cured after the cancer did not return within 5 years.

Now with his new diagnosis his options are (1) to have surgery to remove the two cancers including a laryngectomy or (2) to undergo chemo to slow down the cancer growth, but with this option, statistically, he will likely die in 1-2 years. Radiation is not an option since the area has previously undergone radiation.

With the laryngectomy, the doctor has said, statistically, there is still a 90% chance he will get cancer again in 5 years (in the same area or elsewhere).

The panel of oncologists and surgeons on my Dad’s case could not reach a consensus about the best treatment option. 50% thought he should have surgery and 50% thought he should not.

The best path forward is muddy to say the least.

My parents need to make a decision quickly about which option to proceed with and I was hoping my Dad could speak to someone who has undergone a laryngectomy to hear more about their experience. In talking with the Canadian Cancer Society I have been told they don’t match patients with volunteers like this, so they suggested I try this page instead.

If anyone has been in a similar situation as my Dad I would love to talk more.

Re: Deciding whether to have a laryngectomy

Posted by Runner Girl on Oct 27, 2020 3:28 pm

Hello jessicas‍ ,

I'm sorry that your dad's cancer has returned.  I've found a post from another member whose father also had a laryngectomy.

https://cancerconnection.ca/discussions/viewtopic/80/64711?post_id=313731#p313731

As well I'd like to connect you to law‍ 

Runner Girl
Never stop believing in HOPE because MIRACLES happen every day!

Re: Deciding whether to have a laryngectomy

Posted by jessicas on Oct 27, 2020 3:44 pm

Thanks Runner Girl‍! I've followed up with both of those people. Appreciate your help!

Re: Deciding whether to have a laryngectomy

Posted by law on Oct 27, 2020 6:40 pm

Hi jessicas‍ ....and Runner Girl‍ , too,
I received the referrals from both of you and I am glad my name came up. I feel for both you and your father, jessicas, as he has a big decision to make, which will change the quality of his life and requiring adjustment for you as well.
I had tongue cancer; a tumour at the base of  my tongue, so my short answer to you is, "No, I have not had a laryngectomy" I had 36 rounds of radiation.However, this CancerConnection site is the best link to those who have, or decided against it, as well as reliable and supportive medical info and people. The other reputable sites are for the Mayo Clinic or Johns Hopkins.
I do know that he apparently has esophageal or cancer in his larynx, pharynx, or throat area. A laryngectomy survivor said her fellow peers refer to themselves as 'being a Larry' . An insider's reference! There are degrees of this surgery ...removal of all or part of the larynx, and/ or voice box. Some folks then must breathe through a hole in their neck, and learn how to eat and swallow as well. Some surgeries are less drastic. A discussion with your father's Otolaryngologist and Oncologist is necessary!!
If the Cancer Centre you are dealing with has a library, I suggest you avail yourself of the resources. And, there are others on this website who have had these experiences themselves. Good Luck !  ...and, to learn about cancer is very comforting and bittersweet.
Keep in touch please,
law

Re: Deciding whether to have a laryngectomy

Posted by jessicas on Oct 27, 2020 6:57 pm

Hi law‍ ,

Thanks for your response! A full laryngectomy and removal of the voice box has been recommended and he has had many conversations with the surgeon over the past couple of months while they were investigating the location of the cancer. As such, he would have to breathe and speak through a stoma which is quiet a daunting idea. But I have read lots of resources and watched videos to suggest life after a full laryngectomy is possible (and even vibrant).

If anyone who has had a full laryngectomy (a larry as you say!) sees this I would love to chat more! There are many pros and cons with either option presented to my father and hearing from those who have gone one route or another would help in his decision. As I mentioned, even the oncologists and surgeons can't reach a consensus about the best course of action (which, in any event, is up to my Dad to decide in the end).

Thanks,

Jessica

Re: Deciding whether to have a laryngectomy

Posted by Lianne_Moderato on Oct 27, 2020 7:00 pm

jessicas‍ 
I am sorry your dad and your family finds itself in this position.
Runner Girl‍  gave you a link to one of the discussions. If you want to explore further you can type laryngectomy in the search bar of the site and it will bring up all posts where it is mentioned. I also found this decision guide that was posted in one of the threads that might be a helpful tool as part of the decision making process. It is here:  https://decisionaid.ohri.ca/docs/das/OPDG.pdf

 I hope you find a nugget of infor that helps you one way or the other. Please don't hesitate to reach out going forward as well. We have a wonderful group of family, caregivers and friends on the site with a wealth of information on supporting someone with cancer There is a forum for it here:  https://cancerconnection.ca/discussions/viewcategory/35

 

Lianne


 

Re: Deciding whether to have a laryngectomy

Posted by law on Oct 27, 2020 8:35 pm

Hi jessicas‍ ,
Ii am relieved to know you and your father have spoken with your medical team regarding a decision for or against the laryngectomy. It seems you are researching thoroughly the procedure itself and both Runner Girl‍  and Lianne_Moderator‍ have suggested references which will be of help. I am sure the quality of life after a laryngectomy would be quite interesting as the 'Larry' (female) I heard speak a couple of years ago seemed to be doing fine. I met her briefly at a "Head and Neck Cancer" support group and unfortunately I did not get her name...but discussions on CancerConnection.ca will offer you and your father the opportunity to meet others virtually!!
You and your Dad are brave and positive pioneers, whatever decision he makes.
law