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Depressed and frightened

4 Dec 2017 21:37

Hello,  after suffering from lichen planus in my throat for many years and endless dilatations, I had biopsies in July as my throat had been very sore for around 18 months.  The results were high grade dysplasia (pre-cancerous cells) in my oropharynx area.  Every time I swallow it hurts and more so with food.   The doctors have told me that the dysplasia could turn into cancer in the future and I am waiting to have treatment called EMR (endoscopic mucosal resection) which is really worrying  as the whole circumference of my throat is involved.  I wonder if anyone else has had this treatment and can give me some reassurance.

Re: Depressed and frightened

7 Dec 2017 09:54 in response to holly4

Hello, and a very warm welcome to Cancer Chat holly4.

I'm afraid we've not had anyone post about high grade dysplasia on the forum for a while, so I wasn't able to find another member to tag for you to chat with. We do have quite a few people here who've been through treatments to their oropharynx area though, so hopefully someone will be along soon to share their experiences. Our stalwart members @Vatch ‍and @davek ‍may well be able to shed some light.

We also have some information on the website, which I hope will be of help - Stage 0 (high grade dysplasia).

Our information nurses are on-hand too, if you have any questions at all about your upcoming treatment - they'll be only too happy to help: 0808 800 4040 (Mon - Fri, 9am - 5pm).

Wishing you all the very best for the EMR - do let us know how you get on.

Helen
Cancer Chat moderator

Re: Depressed and frightened

7 Dec 2017 12:28 in response to Moderator Helen

Hi Holly,

Welcome to the forum. No wonder you are feeling depressed and frightened. On the plus side, you have been diagnosed at the pre-cancerous stage, the earlier a diagnosis the more likely a positive outcome. You now have a diagnosis and are in the system being monitored. If your condition changes at a later time, this will be picked up and addressed.

I’m afraid I don’t have any experience of your proposed treatment, I hope someone on here is able to provide more specific reassurance.

Best wishes

Dave

Re: Depressed and frightened

27 Jan 2018 12:32 in response to davek

Hi Dave,  Sorry I didn't reply before but I have only just come back to the forum and didn't see the replies. I had my EMR treatment on 10th January and the endoscopists found a large nodule which they removed and sent for biopsy.  The results came through this week and it's bad news.  It's squamous cell carcinoma.  I feel devastated.  I have an appointment next week to see the Endoscopy surgeon to discuss things but they will now pass me on to Oncology after having a team meeting next week to discuss treatment.  I would welcome any advice and guidance as I can't seem to take it all in at the moment and am worried about future treatment.

Best Wishes

Christine

Re: Depressed and frightened

27 Jan 2018 12:42 in response to Moderator Helen

Hello Helen,  Thank you for the welcome and sorry for the delay in replying but I have only just come back to the forum after joining in December.  Things have taken a turn for the worse this week after the endoscopist doctors found a nodule when they operated on the 10th January which has turned out to be squamous cell carcinoma.  Devastated!!  I'm due meet up with Endoscopy next week to discuss the findings and they will then pass me to Oncology after a doctors team meeting early next week.  I'm very worried about what the future holds and what treatment I will be having and wonder if you or any members can help or advise.

I wonder if there is any way I can be informed if I receive a reply to any of my posts?  Many thanks.

Christine

Re: Depressed and frightened

27 Jan 2018 16:37 in response to holly4

Hi Christine,

So sorry to read about your bad news. That must have been a shock, especially after initially being told it was pre-cancerous. My own cancer was unexpectedly discovered during an endoscopy for a suspected peptic ulcer. The biopsies taken during the endoscopy confirmed the type and grade of cancer and a CT scan the following week showed how far it had spread, so gave the stage.

My only real advice is to avoid Googling your symptoms and prognosis - but it is probably to late for that. There is a lot of misinformation on the web, so try to stick to trustworthy sites like nhs.uk, CRUK and MacMillan. It is very easy to be overwhelmed by information and to lose hope unnecessarily.

It is a good idea to have someone with you at any important appointments, to write down any questions you have ahead of appointments and to write down the answers as you receive them. Research has shown that patients only remember about 40% of the information they are told during stressful consultations. 

This forum is a great place for advice and pointers as well as being a safe place to offload things you might not want to share with friends and family? 

Finally, take things slowly and give your mind time to process things - we all react differently.

Good luck!

Dave

Re: Depressed and frightened

29 Jan 2018 23:39 in response to davek

Hi Dave,  many thanks for replying and I was wondering if your cancer was in a similar area and what the outcome was.  My husband and daughters will be going with me to discuss things with the doctors on Thursday and any following appointments with Oncology.  They have already made a list of questions and are very supportive. 

Thanks for the advice to avoid Googling and only use trustworthy sites.  Fortunately I haven’t done any Googling yet!

It’s good to be among people who’ve been or are going through a similar experience and glad I found this site.

Thanks.

Christine

 

 

 

Re: Depressed and frightened

30 Jan 2018 00:57 in response to holly4

Hi Christine thank you for replying to my own post.i hope you have some positive news soon.i also  hope your emr has removed most if not all of your cancer.hopefully you might only need some form of ablation to kill any remaining abnormal cells.please let me know how you get on as i know from my own experience how worrying this all can be.

 

Best wishes james.

Re: Depressed and frightened

30 Jan 2018 10:20 in response to holly4

Hi Chtistine,

If you click on someone's name it will link you to their "about me" details. My own story is long, unusual  and complicated. Theedited highlights are that  I was diagnosed with stage 4 adenocarcinoma of the oesophagus. I had chemo in late 2013 early 2014. The outcome was positive and I'm still alive and well Happy

Good luck for Thursday!
Dave

Re: Depressed and frightened

9 Feb 2018 00:13 in response to davek

Hi Christine ive now got an admission date of the 23rd february for a scope and emr.I hope everything goes well for you on the 13th.

Best wishes james

Re: Depressed and frightened

9 Feb 2018 15:58 in response to James5159

Hi James

That's good news!  I will be thinking of you and hope that all goes well.  I got a cancellation and had my CT scan yesterday which is all good as my treatment will be discussed at next Tuesday's team meeting on 13th Feb.  The strange thing is since I had the tumour removed from my throat, I feel so well and am eating normally.  I know that you can't be too optimistic though so will be awaiting the results of my scan with some trepidation .

Best wishes

Christine 

Re: Depressed and frightened

11 Feb 2018 11:22 in response to holly4

Glad to hear the news that you are okey now and back to us. All the best.

Re: Depressed and frightened

7 May 2018 15:37 in response to holly4

Hi Christine this is just a brief message to.let you know im still thinking of you and wishing you well.I haven't heard from you in a while and hope everything is going ok.

Best wishes james

Re: Depressed and frightened

7 May 2018 20:08 in response to James5159

Hi James

Thanks for your kind message and I was going to post soon.  I finished my treatment last Wednesday and rang the bell in reception as most people do when they've finished.  It was a big relief and a bit emotional as well.  I wouldn't have got through the radiotherapy treament without the patient support ladies who were wonderful.  The mask I had to wear made me feel panicky and claustrophobic but luckily the treatment time was only two minutes except when I had to have a scan as well.   I saw the doctor the day after and as my weight has remained stable since my last chemo I don't need a nasal feeding tube yet.  I have had no appetite since my last chemo and am literally making myself eat and drink as I'd rather do that than have a tube.  The doctor said that the radiotherapy would carry on working for a week or two and then my throat would start to be more comfortable.  At the moment it is very sore and I can hardly swallow without pain.  I've got lots of medication and my daughter said my kitchen looks like a pharmacy!  Just drinking supplement drinks at the moment and things that go down easily.

How are you and have you heard any more news about your treatment?  Did you have a nice holiday?

Thanks very much for your message.

Best Wishes

Christine

Re: Depressed and frightened

8 May 2018 12:30 in response to holly4

Hi Christine

Yes I had a nice holiday in January and im actually in benidorm at the minute lol.insurance was a nightmare and because im awaiting a date for halo treatment most companies wouldn't even cover me until ive had the treatment.so I had to go with direct line and exclude cover for oesophageal cancer.im hoping to have halo in the next month or two.has all you're treatment now finished and have the doctors given you any indication if its working.the second ct scan results on the nodules in my lungs came the day before I came on holiday,they showed that there was no change in size so the doctor said there is a good chance that they are just scar tissue from an old chest infection.but I will have another ct scan in six months.

Best wishes james