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Oesophagus cancer

2 Jan 2019 14:48

Anyone been through this???

Oesophagus cancer

2 Jan 2019 16:40 in response to LaurenM91

 

Hi Lauren,

There are a number of people on this forum who have oesophageal cancer. If you want to hear some of their stories, go to the blue banner at the top of this page and click on the search box. Enter cancer of the oesopagus or sometihing similar and, this will bring up previous posts on the subject.

Have you been diagnosed with this yet, or are you still waiting for results?

We are always here for you.

Kind regards,

Jolamine xx

 

Oesophagus cancer

2 Jan 2019 20:16 in response to Jolamine

Hi my dad got diagnosed on Friday with this type we have been left with lots of questions and np answers because of the holiday period x

 

He is on morphine at home and been very sick and complaining of sore head today I just feel like since we have known he has detiorated even tho he's probably been living with this since the back pains all started in September xx 

 

I feel useless and helpless and trying to be strong for him and my mum who is still in remission from non Hodgkin lymphoma xx 

Oesophagus cancer

3 Jan 2019 14:11 in response to LaurenM91

Hi Lauren,

My husband had this, sadly he passed away early October but if I can answer any of your questions, I'm happy to.

Sue

Oesophagus cancer

3 Jan 2019 14:57 in response to AusSue

Hi sue 

So sorry to hear this could u tell me about your husbands  diagnosis my dad has been complaining of pain and been back and forward to doctors from September 

We don't know anything about his cancer yet because of new year 

Did ur husband get any treatments x

Oesophagus cancer

3 Jan 2019 16:05 in response to LaurenM91

Hi Lauren,

Thank you.  Neil was diagnosed Dec 2017, with stage 3 oesphagael cancer.  His only symptoms prior to diagnosis was trouble swallowing certain foods, mainly meat, but other things as well on occasion, if he hadn't chewed it well enough.  He had always had reflux and heartburn, both of which were untreated.  He just considered both normal.  He felt fine, no pain at all.  When he first went to the Dr in regards to this, an x-ray was taken of his chest, which showed he had pneumonia.  Once that was treated, he was booked in for a gastroscopy.  They were unable to to get that all the way down due to his cancer blocking the way. We found out that day he had cancer, although they didn't know what type or the extent of it until the results of the biopsy and a later PET scan.  Things moved very quickly from then.

He started radiation early Jan (30 treatments), and chemo (6 treatments) at the same time.  Radiation was everyday Mon-Fri, Chemo was weekly each Monday.  The last chemo was cancelled, as Neil wasn't well enough.  Neil didn't do very well at all with the treatments, but in saying that there were others getting treatment at the same time that did quite well.  I can't remember what his first chemo treatment was called but it was different to the second.  He was supposed to have surgery in June to remove part of his oesphagus once the treatments had been completed, but the scan taken prior to surgery showed a spread of cancer to numerous lymph nodes, which made the surgery not beneficial in his case.  The oncologist then suggested a further round of Chemo (6 treatments). Folfox chemo this time, which again he didn't do well on.  He ended up in hospital after each treatment.  Chemo  was cancelled prior to his fourth treatment, and we were told there was nothing more they could do for him except keep him comfortable and pain-free.

I hope what I've written hasn't shocked you.  There are lots of people of have had this and are still doing well years later, @davek ‍ is an example of someone doing really well after treatment.

.Once your Dad is seen by his Doctors, you will find out what treatment plan suits him.  Waiting on results and appointments is the worst, but once you have a plan of action, it does get easier.

Wishing you and your dad all the best.

Sue xx

Oesophagus cancer

3 Jan 2019 16:52 in response to AusSue

Hi sue 

Well dad just back from doctors meeting not going ahead till next Wednesday 

Is this normal to leave someone this long after being diagnosed 

He has been prescribed some drinks as not eating alot and new anti sickness tabs as since coming home on Monday he keeps being sick xx

Oesophagus cancer

3 Jan 2019 17:21 in response to LaurenM91

Hi Lauren,

There will be many medical specialists involved in making decisions re your dad's treatment.  All the involved Drs have a meeting once a week (in our case) to discuss patients, and the treatments are determined at these meetings, after which you will meet one of them. where your treatment options will be disussed with you,  In our case (I'm in Australia), it was just over a month from being told Neil had cancer to when actual treatment started.  We found out Neil had cancer on a Friday, then the following week he met with a surgeon, a pet scan was organised I think for the week after, then an appointment with an oncologist and radiation oncologist.  He also saw a dietician before treatment started.  It is hard waiting for appointments though.

The drink supplements are great when you are unable to eat.  Neil was prescribed drinks also, he preferred fruity non-dairy drinks over the milky ones, there are quite a few you can chose from, so if he doesn't like one try another until you find one he likes.

With the anti-sickness medication, if he has trouble with the tablets, speak to his Doctor as there are medications that dissolve in your mouth that are easier to take if he is having trouble swallowing.  There are also injections, although you would need nurses to come in and give those.

I know it seems like a long time before treatment starts, but I doubt it will make much difference to his cancer. 

I hope the drinks and anti-nausea tablets help your dad, while you wait for his treatment to start.

Sue xx

Oesophagus cancer

3 Jan 2019 20:37 in response to LaurenM91

 

Hi Lauren,

I'm glad to see that your dad has seen a doctor and been prescribed some drinks and new anti-sickness tablets. Some of the drinks are pretty awful, but you will find out what ones he likes best with time. My mother-in-law lived solely on these for 2 years before she died of non-cancer related issues. Her nurse managed to get her an assorted tray first time around, which gave her a chance to try the different flavours and, she stuck to the vailla one after that.

If the new anti-sickness tablets don't help, don't be afraid to ask for something different. I don't know much about these when swallowing is an issue. You may well be able to get the tablets which dissolve in his mouth or a liquid suspension. I know that you can get the injections in the UK, but that means getting a nuse out to administer them.

You say that you have lots of questions. Why not draw up a list of them, so that you don't forget any of them when you see his consultant? I do this before each appointment.

I am glad to see that your dad's doctors are meeting next Wednesday and, hope that it won't be long now before they decide on the management of his condition.

It is not be easy coping with both parents having cancer, although I'm glad to see that your mum is in remission. I have been through the same circumstances many years ago and know just how hard it is. Do you have support from family, friends or carers? You really need to have someone, as it is too much for one person to do all that you are doing 24/7.

I am thinking of you all and hoping that you will soon be moving forward. We are always here for you.

Kind regards,

Jolamine xx

Oesophagus cancer

3 Jan 2019 21:48 in response to LaurenM91

My mum has just been diagnosed.  She is a hospital.  They put a stent in.  

It has spread slightly to the omentum.  No surgery, just chemo is being offered.

Oesophagus cancer

3 Jan 2019 22:28 in response to paulaandmum

 

Hi Paulaandmum,

I am so sorry to hear about this diagnosis. I hope that the stent has helped at least a little. When are you likely to start chemo?

I hope that it all goes well and, please remember that we are always here for you.

Please keep in touch and let us know how you are getting on.

Kind regards,

Jolamine xx

Oesophagus cancer

3 Jan 2019 22:44 in response to Jolamine

Thank you sue and jolamine x

Hopefully we know more next week and can start getting through it together as a family as it's just awful seeing him deteriorate when there could be something to help him xx

 

Oesophagus cancer

3 Jan 2019 22:45 in response to paulaandmum

Hi Paula 

 

My dad was also in hospital from Xmas day but he was discharged on Monday as need to wait on the doctors discussing his options we feel lost as we don't know anything about hisntype xx

Hope your mum is well xx 

Oesophagus cancer

13 Jan 2019 16:24 in response to LaurenM91

Hi Lauren,

I was wondering how you got on at the appointment for your dad, hoping were given more information regarding any plans thay have for treatment.

Sue xx

Oesophagus cancer

22 Jan 2019 09:40 in response to LaurenM91

Hi LaurenM91

My husband is currently on a trial for this type of cancer, he has stage 3 with a slight chance of surgery after the chemo and immunotherapy cycles.

We found the waiting for test results horrendous, he first went to the hospital at the beginning of October, we would wait a week after each test for the results, he finally started his treatment a week before christmas, we're now halfway through, he's not had any of the bad side affects from either immunotherapy or chemo and actually feels that eating is now slightly easier, Still a long way to go and we won't know if he can have surgery until the surgeon has done aother laparoscopy at the ned of the treatment,

We take each day as it comes, he's still managing to work - fortunately he can work from home - he gets tired a lot and he tends to be 'off' for a day or so after the IV's. 

Feel free to ask me anything, I'll do my best to answer, i know from our experience that it is a very traumatic time waiting on results