Support Forum
 Barrett's Support Forum :Barrett's Support Forum :Support Forum
Message Icon Topic: New member seeking advice Post Reply Post New Topic
Page  of 3 Next >>
Author Message
bigfishybob
Newbie Plus
Newbie Plus


Joined: 11 Jan 2017
Location: United Kingdom
Online Status: Offline
Posts: 14
Quote bigfishybob Replybullet Topic: New member seeking advice
    Posted: 09 Aug 2017 at 7:17pm
Hi, I'm Shaun and I was diagnosed with Barrett's around 7 months ago. On Monday I was further diagnosed with T1 esophogeal cancer and have a meeting with the surgical consultant next Monday.

Just wondering if there are any specific questions I need to ask, or if anyone has any advice on what course of treatment those in a similar position have taken. Oh, I'm 56 years old, 5'10" and weigh just over 20st (so classed as obese)

Brief history :

07/12/16 : diagnosed with diverticular disease

30/12/16 : gastroscopy, 16 samples taken for biopsy.

07/01/17 : diagnosed with Barrett's

26/04/17 : gastroscopy, 20+ biopsies taken, noted high grade dysplasia

02/06/17 : CAT scan

10/07/17 : endoscopic mucosal resection. Lesion removed in 3 sections, and further biopsies taken.

24/07/17 : esophogeal ultrasound

27/07/17 : PET scan

07/08/17 : confirmed lesion removed was cancerous, am staged as having t1 esophogeal cancer

There are further sections of hgd which need treatment, and as the lesion was deep they are now doing further scans and ultrasounds to see if it's spread (PET scan showed swelling in one of salivary glands)



IP IP Logged
steveb8189
Senior Member
Senior Member


Joined: 09 Mar 2016
Online Status: Offline
Posts: 240
Quote steveb8189 Replybullet Posted: 09 Aug 2017 at 7:46pm
Hi Shaun

Wow, you've been through a lot. Welcome to the forums

I'm just a "normal" Barrett's patient but there are others on here who have or are going through the same situation as you. You'll find a few recent previous posts.

Quite a few people identified with Barrett's are then diagnosed with EAC within 12 months. You probably had it during your first endoscopy but wasn't biopsied.

Did then do no RFA when they did the EMR? Will that be their approach for the HGD? Do you know long long your Barrett's is? I guess with 20 biopsies you have quite a long segment.

The salivary gland is strange. I am not knowledgeable enough to advise but I thought it was local lymph nodes which were of concern. It may be your salivary gland is just enlarged due to reflux??

Hopefully someone else will be able to add more.
IP IP Logged
steveb8189
Senior Member
Senior Member


Joined: 09 Mar 2016
Online Status: Offline
Posts: 240
Quote steveb8189 Replybullet Posted: 09 Aug 2017 at 7:48pm
PS I love the fact the emoticon you used for your post was a smiley face. Very glad you are being positive :-)
IP IP Logged
bigfishybob
Newbie Plus
Newbie Plus


Joined: 11 Jan 2017
Location: United Kingdom
Online Status: Offline
Posts: 14
Quote bigfishybob Replybullet Posted: 10 Aug 2017 at 6:18am
Hi Steve, thanks for the response. Yep, I'm currently in a pragmatic & practical "it is what it is" mindset, just hoping I can keep that up

RFA was mentioned as a possible treatment option, probably in around March/April, but I've not had it so far. On Monday he mentioned it again as a possible option, as well as radiotherapy, but is also sending me for CPEX testing (stress test) to assess if I'm fit enough for a esophagectomy (surgical removal).

He said the team was meeting to discuss my case this week, so I'm expecting the surgical consultant to have a proposed treatment plan on Monday (or options available and the risks associated).

I think he said 6cm-8cm for the Barrett's, but that is something I need to clarify. I also need to ask if it is EAC or ESCC (but with it being near the GED I'm guessing it will be EAC).

I'm really hoping the salivary gland is a red herring - I had the tail end of a cold when I had the PET scan - and the ultrasound shows nothing. Obviously it's a major game changer if it does. There was no sign of anything on the PET scan in the local lymph nodes.   
IP IP Logged
chrisrob
Senior Member
Senior Member


Joined: 01 May 2007
Online Status: Offline
Posts: 2559
Quote chrisrob Replybullet Posted: 10 Aug 2017 at 7:43am
Hi Shaun,

I do hope your treatment goes well. The big advantage you have is that it has been found early enough to make successful treatment possible.

Your MDT team will decide the best course of treatment. It will depend on the irregularities of your tumour but at a T1, it is usually quite possible to treat with EMR + RFA.
If associated with Barrett's and HGD, it will be OAC rather than SSC.

All the best.
IP IP Logged
bigfishybob
Newbie Plus
Newbie Plus


Joined: 11 Jan 2017
Location: United Kingdom
Online Status: Offline
Posts: 14
Quote bigfishybob Replybullet Posted: 10 Aug 2017 at 9:49am
Thanks chrisrob

I'll keep you all updated obvs
IP IP Logged
steelee
Groupie
Groupie


Joined: 21 Jan 2016
Location: United Kingdom
Online Status: Offline
Posts: 82
Quote steelee Replybullet Posted: 12 Aug 2017 at 11:18am
Hi Shaun,

I am in the same position although much further down the line, mine was staged at T1a so at the moment am being treated with RFA after 2 x EMR's as don't want the op unless there is no other option, it does mean life long care though and little long term data on how effective it is long term and of course always the worry it will return or could be missed but that's the chance I am prepared to take at the moment, it is a difficult time and if you want to talk things over I am more than happy to give you a call for a chat.

Ed
IP IP Logged
bigfishybob
Newbie Plus
Newbie Plus


Joined: 11 Jan 2017
Location: United Kingdom
Online Status: Offline
Posts: 14
Quote bigfishybob Replybullet Posted: 14 Aug 2017 at 7:28am
Thanks Ed

I'm also not keen on the idea of the idea of surgery, though the decision may not be mine to make - as I'm 56, obese and have sleep apnoea they may decide I'm not a suitable candidate.

I'm just about to set off to see the surgical consultant to discuss the latest test results and treatment options so I'll check back in this evening
IP IP Logged
bigfishybob
Newbie Plus
Newbie Plus


Joined: 11 Jan 2017
Location: United Kingdom
Online Status: Offline
Posts: 14
Quote bigfishybob Replybullet Posted: 15 Aug 2017 at 7:41am
Met with the surgical consultant and my nurse specialist yesterday. He didn't seem as keen on immediate surgery as my usual GI consultant, seeming to favour a course of radiotherapy and monitoring (though they had not had the results of the salivary gland ultrasound back).

The MDT are meeting tomorrow though to discuss my case and my nurse is going to phone me after the meeting to bring me up to speed.

I know they're not going to dictate what is the best treatment for me but I WOULD like someone to say "In the opinion of the team option X will give you the best chance of being around in 5 years"

We'll see what happens tomorrow
IP IP Logged
steveb8189
Senior Member
Senior Member


Joined: 09 Mar 2016
Online Status: Offline
Posts: 240
Quote steveb8189 Replybullet Posted: 15 Aug 2017 at 9:18am
Sounds like they're progressing quickly with the discussions which is good. I hope they give you some solid feedback tomorrow.

I guess if you asked the specific question on treatment options they would say surgery has the best 5 year outcome but opens up a debate about potential changes to your quality of life.

Have you had the CPEX testing yet? I guess that could be the deciding factor given your overall health.
IP IP Logged
Page  of 3 Next >>
Post Reply Post New Topic
Printable version Printable version

Forum Jump
You cannot post new topics in this forum
You cannot reply to topics in this forum
You cannot delete your posts in this forum
You cannot edit your posts in this forum
You cannot create polls in this forum
You cannot vote in polls in this forum