Start of journey with laryngeal cancer

Hi LauraTT and a warm welcome to the Macmillan Online Community. I just dropped by and noticed you've not yet had an answer, I'm sure someone will be along soon. Sorry that you needed to find us and I am especially sorry to hear about your ongoing problems.

Although I had a different type of cancer, any cancer diagnosis brings many questions, lots of confusion and stress but talking with other people who are on the same type of journey will help you navigate this rollercoaster.

The Community is organised into dedicated support groups so can I see you have joined our supportive Larynx cancer group, this will be a good place to connect with others navigating the (support of a family member on the) same type of cancer journey.

When you have a minute, it would be great if you could pop something about your journey so far into your profile as it really helps others when answering or looking for someone with a similar diagnosis. It also means that you don't have to keep repeating yourself. To do this click on your username and then select 'Profile'. You can amend it at any time. 

It’s always good to talk and the Macmillan Support Services provides lots of information, support, financial guidance or just a listening ear.

Most services are open 8am to 8pm, 7 days a week and it's free to call on 0808 808 00 00 have a look by Clicking here to see what is available and we also have our Ask an Expert section, but do allow two working days for replies from our expert team.

Sending you welcoming hugs Bx

Thanks for the reply MRSBJH, it didn't seem there was much on here for this type of cancer so didn’t know what to expect in terms of replies. Anything I did find was some time ago so don't think I'm likely to get much advice x

Hello again LauraTT. I'm quite new to being a Community Champion. New to the cancer story really, this time last year I didn't have a clue I had a hitchhiker in my body!

It does seem yours is a rare cancer. If you want advice though you could Ask a Nurse here on the Ask an Expert forum. You might need to wait a day or so for a reply as they're extremely busy at the moment.

Sending you warm wishes, B xx

Thanks, I'll give that a miss. Just really wanted to find someone who's gone through it themselves 

Hi again @LauraTT.

In that case just reach out to someone who has posted on this forum. Just go into one of the threads and reply, you can ask a question there.

Barb xx

I have had this cancer and today cant speak. Believe me when I say that is the least of  my problems I can type which gets me through.  I dont want to tell you what you can expect after an operation and RT and chemo. I just hope for your sake you dont need the full treatment. Everything leaves its mark, and makes life harder. Read my other posts if you really want to know. 

Thank you, when I'm brave enough I will look at your story, everything I've seen so far about treatment for this scares me stiff. I'm goi going to have to make a decision soon about what to do 

Hi Laura.  Hope you are still in this group.  And hope that you have your results, a treatment plan and lots of the right support.  My husband had larynx cancer 9 years ago and this group was quite active then.  My husband was diagnosed with larynx cancer 9 years ago.  Unfortunately, it wasn't caught early and was already at T4.  Radical, life changing, but life saving surgery ( removal of the larynx, vocal chords, part of the thyroid and a couple of lymph nodes for good measure) with 6 weeks daily radiotherapy and bookend chemotherapy (1 at the start of treatment, 1 at the end).  He can still speak.  His voice is very different to what it was, but it is very clear.  There are a few different options in the speech department and your medical team, which should include someone from the speech therapy team will be able to tell you what they are.  I have to say that our speech therapy were and still are the most awesome people on this planet.  They have got us through a number of issues over the years.  Unfortunately, his cancer has returned and partly because of where the tumour is and partly because of previous treatment, they cannot fix it totally this time, but he has just started immunotherapy which has very good results in head and neck cancers, so keeping every crossed that the immunotherapy is successful in containing it for a lot of years. 

Thanks for the message, firstly I hope your husband does well on the immunotherapy.

I have started treatment, had 2 sessions of chemo so far, first round was a bit tough after 5 days but they reduced the 5FU this time so fingers crossed .

Originally I didn't want the surgery but they were reluctant to do it due to the tumour being so close to my carotid artery and my spine so in a way pleased it wasn't just my decision. They also said RT would endanger my airway so between us chemo was chosen.

Even the one round has had a great effect, my voice has improved, swallowing has become easier and the lumps on my neck have all but gone.

My consultant did suggest RT on our last phone consultation which I was reluctant to do so am hoping this 2nd round of chemo doesn't affect me so much with the side effects and we can carry on with this.

I do have a real appointment with him in two weeks so hopefully will have some positive updates then

Once again, thanks for taking the time to reply xx

It's great to hear that you are doing so well Laura.  And also that your thoughts and feelings are being listened to and taken into account.  They won't put you you through any more interventions than are absolutely necessary.  And the side effects will settle.  Although thoroughly unpleasant and nasty to deal with at the time. This battle will have been so worth it when you get to that long term goal of all clear no more treatment needed x