How long is too long to wait for trea... - Oesophageal Patie...

Oesophageal Patients Association

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How long is too long to wait for treatment to start

HarryJaffa
HarryJaffa

My brother had his first endoscopy 5 weeks ago because he had a blockage in his gullet and couldn’t swallow food or fluids. He had lost 2 stone in weight. Endoscopy identified ‘suspicious mass’. 3 weeks in hospital for investigations confirmed T3 N2 M0 diagnosis at junction of stomach and oesophagus. Only discharged after JJ feeding tube fitted. Now a further 2 weeks at home on feeding tube. He has had PET scan and cardio test but still no sign of treatment starting. He is expecting to have chemo prior to surgery. So question is... how common is it to have to wait 5weeks plus before chemo starts?

Obvious he is getting anxious thinking that the longer it is left the worse the prognosis will be.

Appreciate any other similar experiences

17 Replies
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Hi my husband had the same cancer site. He was diagnosed 6 Nov 18 and had a pet scan beg of Jan

He then saw oncologist etc end Jan and had all day chemo end Jan then home for three weeks with chemo tablets morn and nite

Had a bad reaction to February chemo and the third was cancelled

He can no longer have chemo

Saw a specialist surgeon beg of March and had his op 21st May

Hope this helps?

Best wishes to you both on your journey

Fizzy35

HarryJaffa
HarryJaffa in reply to Fizzy35

Thanks for your reply. Yes that does give some perspective of timescale. He has just had results from PET scan which means he needs more biopsies taken from lungs now. Understandably he just wants to start chemo and worried sick that it is spreading. So useful to know it does take time.

🙏🏼

Hi, I was similar to your brother and lost 4 1/2 stone could not eat any solid food and barely drink. Two endoscopies, manometry, ct scan,barium swallow. Third endoscopy in eight months found a known malignant mass at goj. Prior to this it was called a hiatus hernia. I then spent a further ten weeks in hospital due to nutrition worries. Our pleas were ignored prior to third endoscopy as I was told I had achalasia. I had pet scan which showed possible secondary cancer in left lung, I thought I had had pneumonia in the December of 2017 which I didn't seek help for as I was already seeking help for eating problems. I was told it was impossible as was not on ct scan in Feb 2018. ( this was because only part of lungs appeared as scan did not include thorax) lung biopsy followed which came back negative, this meant ivor lewis operation was now available. Hours later consultant came into room to let us know it could be a false negative (25% chance ). We had contacted family and friends to let them know it was negative and op was going to be soon and now we were back to square one. Three weeks later I was put on anti biologics and lung lesion began clearing up. I think I went to 7 mdt meetings where I was represented by people that either barely knew me or had never met me. We eventually had conversation with nurse who was as frustrated as we were who said they will have to do something quick as you have been here for 50+ days and you must start treatment within 62. I had op 59 days after diagnosis and could not have neo adjuvant chemo as ton hospital had put me on damaged my liver.

I hope your brother has negative result from lung biopsy and decision to treat is swift. When you are told what is there you want it out as soon as. Delays happen but the earlier the intervention the better.

Wish you and your brother well on the long road ahead which is a hard road but definitely worth the effort. We who have had the op are the lucky ones and more needs to be done to catch this early and improve outcomes for those the develop this cancer in the future.

Best Wishes and good luck

Bunny

HarryJaffa
HarryJaffa in reply to Bunny69

Oh my you have really been through a difficult time. Thanks for your thoughts. The lung biopsy was negative 👍 He starts chemo (FLOT) in the morning. Due to have four cycles before surgery in April. Surgeon optimistic that he is suitable for robotic (keyhole) surgery which will help with recovery. They are suggesting he has a 50/50 chance of cure rather than palliative. Fingers crossed that he is able to complete the chemo without any problems. The surgeon’s optimism has given him hope and a chance which is all he wanted. Something to work with.

So 2020 is going to be a tough time but here we go. One of our concerns is how he will cope with the nausea give. That the tumour is blocking his oesophagus and he won’t be able to vomit. And he also has to manage his tube feed at same time as managing steroids etc. He is definitely fitter now than when he was in hospital in November but no chance of putting on weight as he is limited to his overnight feed.

Thanks again everyone who has replied, I’ll keep you updated if there is any news.

Hi they will be having a multi team meeting put his case and decide the right treatment depending on his health etc. Chemo should be soon after that. The waiting game is the worse. The fact they have put in a feeding tube is one step forward.

My journey started 4 years ago in Dec and had chemo prior and after op.

Lost 3 stone during op but gained 1 stone since.

Hopefully you will have a plan soon.

Best Wishes

Debbie

kiddy
kiddy in reply to kiddy

Also meant to say i had tests in Oct chemo started Dec.

HarryJaffa
HarryJaffa in reply to kiddy

Ok, thanks

HarryJaffa
HarryJaffa in reply to kiddy

Thank you. I’m feeling reassured that in fact he has had a lot of procedures in a short time but just not chemo yet. As you say it’s a worrying time for all.

I do think that during the entire cancer journey I took with my husband 2yrs ( he had the cancer ) the waiting for a treatment plan after the tumour was discovered was the very worst . Somehow with Oesophageal cancer there are lots of tests and the MD team need them all to be complete before making the best decision to go forward as the treatment and surgery are brutal and complex and the oesophagus so close to other vital organs , lungs , heart etc . The stent is super positive though because I'm presuming this means your brother can now eat ok , and do tell him to fatten himself up because he will need that later . I would think that he will hear very shortly what his team have decided and despite being fearful about it he will feel better because once you are in the momentum of attacking the cancer this is a huge boost psychologically ,despite it often being physically tough . However, if you can , try to get him not to stress and be anxious at this point , it is what it is , and he needs to conserve his energy and positive mental wellbeing for the road ahead . Bon courage for the future .

HarryJaffa
HarryJaffa in reply to evikeb

Thank you 🙏🏼

He isn’t on social media and doesn’t even have a mobile phone. But I will share everyone’s comments with him.

Also although initially there was talk of a stent being fitted but they changed their mind and so fitted a feeding tube straight into small intestine instead. So at least his weight is stabilised and is slowly gaining some weight.

🙏🏼😊

I was diagnosed during endoscopy on Nov 28th last year. Started chemo Jan 3rd this year. Had Ivor Lewis on May 8th, follow up chemo ended August 30th. Started new full time job in late September.

Hope this helps, there's light at the end of the tunnel, and in my case looking back it feels like the last year has flown by.

HarryJaffa
HarryJaffa in reply to Danstable

Thank you 🙏🏼 so glad it worked out for you. 😊

Waiting will be there given the multititude of tests et al required. Saying is very easy but being extremely anxious is noway going to help stabilise the emotions neither the weight pre treatment.

Cheno is not only the treatment. The treatment will be outcome of the multi discipline team of doctors, surgeons, specialists. As somebody else have mentioned earlier.

Perhaps introducing your brother to charilities like Maggie's or CLAN or any other group which deals with cancer patients and from your written sy proms this is oesophageal cancer. Find upper gastrointestinal patients groups. So he ca. Talk speak to people with similar event with different timelines and can help himself to stabilise emotionally.

Anxiety wont be helpful for the treatment or recovery thereafter. Be chemo or surgical or combination.

This forum has tonloads of information from patients on from all walks of life and from different stages. Its helpful to browse old threads. Immensely valuable information here.

Maybe one option is to share the computer screen for him to read the threads or print those for his reading on his own. Just suggestions.

Good luck.

I've read all the other replies. I was the same with my husband. Diagnosed Sept last year, after 3endesopys. Started pre surgery chemo November then had IL op 7th March and post op chemo in May. He's not on any social media and reading the helpful answers on this site got us through it all. The waiting is terrible. But once it starts it will be a roller coaster of appointments. Let him get a bit of weight on him to support the effects of chemo and the operation.

All too common I suspect. My tumour was found in March. I began chemoradiotherapy at the beginning of June and had surgery at beggining of Sept. It is worth talking politly but firmly to consultants secretary to say you are worried about thetimescales. I spoke up when I was given a date to start my treatment that was longer than I had been told. It was brought forward a week. Every scan etc was only just in the urgent timescale and I did not start treatment within the reccomended time. Try to keep positive

I think personally that is far too long and I think guidelines for Uk treatment suggest 4 weeks max before treatment should be initiated. Quiz the team on UK targets for start of treatment. I am a UK citizen but living in Qatar as my husband works here. I was diagnosed with Oesophageal cancer here in Qatar following endoscopy due to difficulty swallowing and weight loss on Sept 15th. Was in front of specialist surgeon the next day. CT Scan the following day. Ultrasound endoscopy 2 days later and Pet scan the following week. Heart Echo 2 days later and Bone biopsy the following week. I was telephoned following each meeting of the MDT by my oncologist to keep me fully informed of their discussions and Treatment commenced in under 3 weeks . Treatment is not private it is within their standard state scheme (like NHS). It is why we are praying my husbands contract continues here as everything happens extremely quickly and no issues with drug funding or whatever treatment is required. Equipment is state of the art in every respect and nursing - mainly Phillipino, is fantastic - they are such gentle caring people and make the most perfect nurses. I hope and pray that the NHS improves in the UK so that the appropriate tests and treatment can be delivered on time and without any further delays such as you have experienced thus far. It is very important as prompt treatment impacts on outcome. Push hard for it and seriously challenge your team on what appears to be their failure to meet targets and internationally accepted guidelines . Its the squeeking wheel that gets the oil I'm afraid to say.

We was the same thinking it was a long time my husband had about a 6 week after tests then he started his chemo he is now on his 2nd cycle and has chemo tablets at home he will have 3 cycle and they say a 6 week body rest then his operation so don't worry two much I know what you mean it seames like a week is a month it's the waiting that kills because you feal like nothing is bn done but while you are waiting the team of ppl will be working out his best possible tips of chemo and the best way forward for him good luck and keep in touch

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