Esophagus cancer stage 4

Hi Cookco

Most of us have been where you are, one way or another.

Personally I'm 53, stage 4 squamous cell carcinoma OC. I've had chemo-radiation and I'm currently on immunotherapy. I was not suitable for surgery as the tumour was too high in my throat. I was diagnosed in november 2022 and I've been fighting ever since.

I appreciate you will feel totally overwhelmed but hopefully you will have an excellent medical team around you to guide and advise you.  A PiCC line really does make your life alot easier for bloods, chemo, etc instead of pricking you every time you need treatment.  You get used to it and you can get covers for it to save you seeing it all the time.  You can also get what's called a Limbo to wear in the shower to save it getting wet. 

As for the question of how long you've got.  Its a big question.  And do you really want to know?  Do the doctors really know.  See what treatment they're offering, see how you're body reacts as we're all different then rethink the question then.  There's no hurry. And if your Dr is saying have the conversation in 3 months I'd follow her lead.

Use your sons wedding as a focal point. Share this with your medical team so attempts can be made schedule everything around you being at your best for the wedding.

Hopefully this helps clarify a few little things.  Good luck on your journey.

Mel

Thank you Mel for replying.  I think I've just not come to terms with it yet. Maybe when my chemo starts I will. Got to go back to hospital Wednesday to sign consent form for immunotherapy and will chat more to them then. Have you reacted well to your treatment? Has the tumour shrunk? 

Cookco 

Yes. Last week I learned that the tumour had shrunk with immunotherapy and we are currently working out the way forward. Unfortunately where the tumour has receded its left a hole between the trachea and oesophagus called a fistula.  I'll find out tomorrow what the outcome of Friday's MDT meeting was and whether the surgeons have a solution to this hole. A stent in my oesophagus didn't work last time so I'll see what they have to say. You'll find you do alot of waiting on this journey, from appointment to test to result to whatever next.

I appreciate it is early days. So yes, you are raw and still getting to grips with the fact that your life is about to change completely. This forum is great for asking questions or ranting. Someone's always here to listen. Just ask if there's anything else I can help with.

Just take one day at a time. 

Take care

X

Dear Cookco, just reaching out as my husband, 53, heard this life-changing news too in October and been in hospital since. He collapsed with heart attack on his way home from working (as a dancer) caused by the oesophagus cancer causing a hole - a fistula (that Mel mentions below) - that caused his lungs to get a serious infection. 

Regarding your question about time I think what my husband is dealing with, more than the cancer, is fighting infections and had his chemo stopped as a result of these. Blood clots are another concern which he was given a daily injection for but now has had to come off that injection also so that risk is heightened. 

In my experience we can only ask the doctors questions about the most immediate treatments - in my husband's case radiotherapy that is coming up tomorrow.

It is positive news that you still can have chemo and if you are able to have all the planned sessions for that it will be a great step forward for you. Also the immunotherapy trial is positive - my husband was not offered that.

As Mel says reach out to us here. I understand the loneliness. As I said to Mel my husband has no other relatives apart from me and our two young children and we both want our children focusing on their exams not getting overwhelmed and distraught by something they can do little about.

Whatever happens it is good that you have your son's wedding to focus on. If you can stay strong for the chemo and immunotherapy to have its best effects then I hope you will be well enough to enjoy a lovely August day celebrating your son's wedding with all your great friends and family.

Love FlorenceRose

Thank you FlorenceRose. I'm sorry to hear about your husband, it is so hard to keep strong not only for us going through this but those close to us too. I had a very tearful day today, I'm hoping when I start my chemo, even though it might cause other issues, that perhaps I might start to accept the diagnosis. At the moment I'm struggling. My husband was a very positive man and I know he would of helped me deal with this had he still been alive. Take care x

I am sorry to hear that Cookco...today was the first time I broke down and cried too in the hospital on the phone to our son. Although I did not like my son hearing me breakdown it helped so I hope letting yourself cry and just feel what you feel will also strengthen and refresh your spirits. 

Remember all your husband's advice when you were sad or nervous or scared before - you were so lucky to have a positive man in your life for so long (they are rare!) and he will want all his positivity and hope (his legacy) to live on through you. Try and remember his jokes or wry sarcasm too. 

Anyway it will all be an up and down rollercoaster of emotions as you know from grieving for your husband. I or my husband can feel positive for an hour and then both of us are very sad again. My husband likes listening to African music and we searched for new African music together and made lots of new playlists (so maybe find one of your interests you can spend time on - even if its just an hour a day to feel yourself living your life and take your mind of this illness). 

Much love, Florence

Thank you FlorenceRose for those kind words. I really hope the hospital can help get your husband well enough for him to come home. It must be a terrible strain on you both. Upbeat music is a good distraction I might try doing a playlist. Sometimes a good cry help release the built up tension, I do a lot of crying alone, sometimes it's hard to stop once you start. Sending you a big hug

Love Cookco