Gullet (oesophagus) cancer

A support group for anyone affected by gullet cancer (also known as oesophageal cancer) to come together, share experiences and ask questions.

Support

Debbi43
Posted by

Hi everyone. I have been following your group since the 4th August. My hubby 49yrs of age was diagnosed with cancer of the Oscophegus. Until now your stories have kept me positive. We have had all our diagnostic tests done and today after the meeting i thought we would know more, to be honest i have kept myself going for my hubby and 8yr old daughter up until today. So McMillan nurse called hubby whilst he was doing school run and apparently cancer has gone from tummy?? Im not stupid!! Very positive news that cancer is only in one lymph node although hubby convinced its gone altogether. Two other consultants told us otherwise. The Tumour is large after being told it was average and needs chemo to shrink. We still dont have a staging and been told we will see a oncologist in 2wks and feel this is disgusting time to have to wait thinking trt should start asap. Am i over reacting ?waiting 2wks for a cuppa and chat. Im so worried now they are keeping it from us and its going to be palliative care

Debbi43
KevRover
Posted by

Hi Debbi

I would not worry unduly about the two week wait to see the oncologist; that was a similar timescale to mine. Like your husband  I was also 49 years old when diagnosed with stage 2 OC back in January 2016 and here I am about to turn 53 tomorrow , cancer-free and living life to the full! It’s easy for me to say now, but it is so important to retain a positive attitude throughout this whole process.

I do hope your husband’s treatment proves to be as successful as my own and wish you all strength in the months to come; meantime feel free to ask any questions at all, there are lots of helpful folk on here who will offer good advice, based on very similar experience to which yourself and your husband are currently having,

Very best wishes

Kev

Debbi43
Posted by

Thank you. Each day becomes harder watching him unable to eat less. Im so pleased to hear you are cancer free. Sitting here now listening to hubby in bathroom unable to cope with what he has eaten is heartbreaking. I have been positive up until today and im sorry if this sounds selfish but ive kept together with the knowing we would know today what up against. Now im deflated as what McMillan nurse has said contradicts what we have been told previously. I still Cant believe we do not have a staging and still not any wiser to next step.

Debbi43
Luv Chox
Posted by

Hi Debbi, Sorry to read that both you and your hubby are having to deal with everything that comes along with the diagnosis of OS, I understand your feelings of despair whilst awaiting a treatment plan. To give you an idea of our experience, this is a brief time line of our appointments etc.   May 10th Initial referral to upper GI   May 12th Biopsy   May 15 Diagnosed  May 17th CT scan   May 19th PET scan   June 7th Meet surgeon and CNS nurse   June 12th meet Oncologist, discuss treatment plan   June 19th picc line inserted   June 20th start FLOT chemo   August 1st final chemo.   August 16th CT scan  Surgery booked in for October 7th.     So, I hope this helps in some way, once we had a treatment plan in place it all moved fairly quickly. Please feel free to ask any questions etc, there are so many well informed and helpful people here on this site.  Sending you both my very best wishes XX

The smallest act of kindness is worth more than the greatest intention
Luv Chox
Posted by

sorry, OC not OS,X

The smallest act of kindness is worth more than the greatest intention
Zappaman
Posted by

Hi Debbie, I know the waiting can be very worrying but try not to let it get to you. The tumour did not appear overnight, it has taken time to get to the size it is now. I was diagnosed on the 12th of July 2016 saw the consultant surgeon a couple of weeks later then the oncologist.  Had  scans and in-between decided not to have any treatment before the surgery. As the weeks passed I could eat less and less and struggled to drink ensure milkshakes, I'm not suggesting it but I fasted for 4 days drinking green vegetable juice, distilled water and coffee. I had lost a lot of weight, about 5 stones prior to surgery. I had been diagnosed as T3 N2 M0 staging, I was 57 years old and had been a smoker for 45 years. I was in no rush to get the surgery and finally got the surgery on 3rd October 2016. Next week I will be in my 3rd year cancer free and I have regained the weight I had lost. So try to be positive as it does help, I personally felt that it was harder for my wife as she felt helpless. I told her that for me, knowing that she was there for me prior to the surgery was a great support and she would have plenty to do to look after me when I got home from the hospital. So believe me that you are stronger than you know and will get through this. Good luck and kind regards Frank.

BrentS
Posted by

Hi Debbi

Understandably you are worried and devastated by the fact that your poor husband has oc. You shouldn’t worry that they are keeping anything from you. They don’t do things like that these days. Your husband was probably given the news that he had cancer rather brutally straight after his gastroscopy.

You are getting the latest ‘news’ second hand, given to your husband while he was probably driving or at least occupied doing important family stuff.  I’d be surprised if he heard or understood all he was being told. If you have questions (which you obviously do) then you need to contact your specialist nurse and get things clarified. They are there for both of you.

Generally the recommended pathway to a cure is chemotherapy before surgery and then often more chemo. They often explain the purpose of chemo before surgery is to shrink the tumour. Though I think this is a simplified answer. Studies have shown that the outcome is statistically better when chemo is given ahead of surgery, but I think they can’t explain it easily or simply. But as I always say “you can’t apply statistics to an individual.”

Sometimes things seem to move so slowly and other times you wonder why the urgency! Waiting is horrible, but I started chemotherapy within a couple of days of seeing the oncologist.

You have two weeks to get some answers or at least more information so that you can have questions ready for the oncologist. You have more uncertainty than you deserve and it must be so hard. Both your husband and your daughter need you to be in a good place to care for them. I hope you get clarification soon and are able to resume normal service very soon.

If it helps: My diagnosis was almost six years ago so I can’t remember the exact timescales but I started chemo about eight weeks after finding I had cancer and surgery was about four months after diagnosis. 

Counting the days, making every day count.

Brent

LilaG
Posted by

Hello Debbi43, my heart really goes out to you as you are starting out on a similar journey to mine and I know how terribly difficult it is while you are going through it.

In October 2018 I had a phone call from my husband to tell me he had just been told he had Oesophageal cancer and honestly in that instant my world shattered to pieces and I didn’t know where to turn to fix it! In life generally my husband and I can sort most things out together but this was out of our control and, initially certainly, I felt helpless and distraught. My husband was 47 at the time of diagnosis last year and we have a little girl who was a year and a half old at that time.

In summary, my husband had an early stage adenocarcinoma which was initially removed via an endoscopic resection (EMR) in November 2018. I remember that there was a period of a few weeks between the diagnosis and the procedure and I was terrified that this would mean that the ‘ticking time bomb’ cancer would get bigger and worse before the procedure but was reassured at every turn by the doctors and nurses that this was not the case.

Following the EMR the tissue removed was tested and it was decided that as the clear margin was not big enough to be comfortable with, it would be best to have the Ivor Lewis surgery to ensure the risk of recurrence was minimised. This was a bit of a set back but the following January 2019 (after some further tests to ensure he was fit for the surgery) he had the operation. We are very lucky that he has not needed to have chemo before or after the surgery.

My husband is still recovering from the surgery. Although he is back at work his energy levels are not at all like they used to be and eating is a whole different ball game but we feel like the worst is now behind us and we are looking forward to the future. We have booked a lovely weekend away for January next year to celebrate the 1 year post Ivor Lewis milestone!

I know everyone’s story is different and every patient is different but in case it helps I have tried to summarise below the things I did during the very difficult early weeks and months which I found helped me to cope:

  • I was being very strong at home for my husband and child but I needed an outlet. For me this was one or two trusted work colleagues who propped me up, listened to my worries, took me out to lunch, passed me the tissues and gave big hugs. It really helped me and I think it is very important to be able to show your fears, even at work.
  • I became very good at asking friends and relatives for help. I took up the offer of help from a relative who moved in with me while my husband was in hospital for the surgery. She did all the nursery drop offs and pick ups and jobs around the house so I could focus on being in the hospital for my husband every day and most importantly to be there when the doctors did their rounds so I could hear what they were saying and ask them endless questions!
  • I was good to myself during the hardest moments and often planned something nice for myself (a meal out with a friend or something like that) to look forward to.
  • I was continuously writing down my worries and questions in a notebook so that I had it with me during the appointments and I wrote down the answers. I could look back at this when necessary and never forgot to address something I was worried about or didn’t understand no matter how trivial it was.
  • I quickly learned to stop googling at random as it increased my worry and anxiety. Instead I logged on to this forum most days and while I rarely posted I read everything! This forum is a wonderful resource and the people here have provided valuable information and are so willing to help. Most of what I am writing here was advice I was given from the folks here.
  • Recovery after the surgery is long and eating is a whole new ball game but in due course we found trial and error has helped my husband to understand what works for him food wise and what no longer agrees with him. He has lost about 2 stone since the operation which I would like to see him put back on eventually. It is difficult to see him so much thinner and with much less energy than before but it is still early days and we are getting used to a one step forward and two steps back recovery pattern for the next short while at least.

Overall I have learned that I am stronger than I thought (a cliché but its true!) and I can face any challenge, no matter how bad it seems, if I tackle it a day at a time surrounded by people who help and support me.

I really hope all works out ok for you. Keep checking in to the forum.

Best wishes

LilaG

BrentS
Posted by

LilaG’s post needs more than just a

Counting the days, making every day count.

Brent

Zappaman
Posted by

Lila G , that is a great post the asking for help and accepting it is one of the best things anyone supporting a loved one can do. You need support too not just us because I felt it must be so difficult watching a feeling helpless. Well done and kind regards Frank.

Yani10
Posted by

Hi Debbi43,

I'm so sorry, I feel your pain - the waiting is horrendous after you go through the biopsy and what feels like endless tests and scans.  

I know it's easy to say but try not to think of the worst - the fact that there's only 1 lymph node affected is very good news.  Don't be so hard on yourself - it's difficult to stay strong when your loved one has been diagnosed with OC, you're going to have days when you feel totally deflated and this is completely understandable.  

Do follow the advice from Lila G to have some time for yourself as well, my husband was recently diagnosed and while this is a huge blow I'm trying to also take care of myself so that I can better take care of him. 

Use this time to jot down questions you have ahead of the meeting with your oncologist, and as hard as it is try and stay positive.

Sending you hugs

Debbi43
Posted by

Thank you LilaG i will most certainly be trying out some of your tips your post was very comforting. I have had lots of offers with help but decline as feel i should be strong enough to cope, after all its my poor hubby that is suffering the most. Im so pleased your hubby is coming out the other side and wish you both well and lots of wonderful memories are made.

Debbi43
Jackie007
Posted by

Well done BrentS on reaching 6 years that fab news and gives me lots of hope , I had stage 3 an my junction and had chemo and radiotherapy before op which took its toll but op was in January and I am feeling really well just panic now and then invade it comes back , well done to you and let’s hope for many more.