Feeling more informed. OSCC stage 4

Wow! I take my hat off to you both. I was faced with this decision, and it didn't cross my mind not to go ahead with surgery.

Recovery was incredibly slow and side effects completely change your life which I guess you know if you've read other people's blogs but I'm still here 6 years later and I believe it was worth it despite the side effects.

I hope you get to hear from others- miracles can happen. 

Wishing you and P all the best during this difficult time. x

Hi Ses

I know that I have already replied to your first post in relation to ‘is it worth having such a large operation’. However, I wanted to put some more context around my decision to go ahead with 3 large operations over time.

Our mortality is something that raises its head when you are diagnosed with a potentially life threatening disease such as cancer and it is something that we all grapple with and is not to be taken lightly.

I am not afraid of dying like your partner and am not into the scenario of lengthening my life at any cost.

When I was 59 and was first diagnosed with jaw cancer it was a no brainer to have the op. I was still at work and had a lot of life still in front of me so did not find it hard to make the decision to go ahead with the op.

However, at the age of 65 when I had a second diagnosis of jaw cancer I started to think about things differently. I toyed with the idea of not having the op and letting nature takes its course as I was not sure that I wanted to go through another large op.

I discussed in some detail with my surgeon how things would play out if I did not have the op. He explained to me how the cancer would progress (not very appealing) and what palliative care would be like.

Armed with this info I made a list of pros and cons as I needed to make the right decision for me and not regret the path I decided to take.

In the end I decided that there was still so much I wanted to do in life and did not want to give up on it just yet as you are dead a very long time. I did not want to regret seeing my grandchildren grow up, helping my 98 year old father over his declining health, enjoying being in the garden on a lovely sunny day,  spending time with my family at our numerous gatherings.

So for me it was a very personal decision to have the second op. I did not discuss my thinking with my family as I knew how they would think and wanted to make the right decision for me.

Get together with your partner and get him to make a list of his own pros and cons. Discuss with his surgeon how things will progress down the line if he does not have the op. Be fully informed and that will help you both with the very big decision you are grappling with so that you don’t regret the decision you make whichever way you decide. Make sure it is right for you and your partner.

Sending you both my very best wishes at this difficult time.

Lyn

Hi Ses Repect  to you and P in which ever  decision you take,  we too are old school but I had too much living to do I wasn’t facing major surgery so didn’t have that bridge to cross. Which ever path you choose make sure you are fully informed  and sending hugs. Don’t fear the chemo and radiotherapy it’s hard I’m a 61 year old wimp and I did it. I’ve seen our grandson go to high school plus see step granddaughter  has had 3 ittle girls. Numerous holiday  as well

My oncologist said he would aim ti cure me but would take a year from my life he did both.

.But it’s your decision we will all help if you go down the surgery chemo radiation route ,likewise be here for you if you choose not too.

Hazel

Hi, thank you for replying.

I've looked at your bio because more knowledge helps.

It doesn't seem you were stage iv when first diagnosed? Have you had segmental mandibulectomy?

It would seem you possibly had a good 3½ yrs after 1st surgery and all else has been treatment and now sadly pallative.

P doesn't even like going to the barber!

xx

Hi Ses,

I was stage T2 N2 M0 when first diagnosed. My surgery 18 months or so later was a mandibulotomy but half of my paperwork says mandibulectomy. I questioned this and they just shrugged and said 'same thing' I have a metal plate holding my jaw in place. It does sound as though P's planned surgery would be similar to Lyn's?

The side effects I have now, too many to mention, are from the surgery. I wouldn't say I had a good 3.5 years after surgery, not wanting to paint a rosy picture here. I blindly lived in hope that things would improve with regards to quality of life, but it was/is doable & I don't regret having surgery as I got to see my 2 grandsons & that was at the top of my bucket list.

I'm probably now at the stage where you both find yourselves mentally, but I wasn't thrown in at the deep end like P has been and have had time to slowly get there. 

I do my own hair these days as I also used to be a hairdresser!  

Sorry, wasn't meant to sound like you had an easy time it's just there appeared to be a gap 2016-2020 so I thought maybe you were in a better place for a time.

It's very sad reading all the different threads & blogs even though many are very positive too.

There are all different reasons for thinking perhaps "this is my time". Least of all for us as P's mum died at 59 from MND. All different scenarios pop into your head like what if P had the op, came through ok then had MND, could put you to the back of the queue for a quick death. Sounds morbid I know but we are actually coping ok atm.

To think he worked in the nuclear industry wearing his radiation measuring badge for safety and now it's radiation he needs for survival.

Hope you find the decision that is right for P. I have just started chemo radiotherapy for nasopharyngeal cancel and have to say am finding it tough. Sending love x