hello, just been diagnosed

Hi. When you first hear the news it is scary. However there is lots of support available on here for you. You of course need the PET scan to complete your diagnosis. A month to wait to get into the system after this  for treatment is the norm. but it sounds like you have been badly let down by the system for your endoscopy. This should not take longer than 3 weeks from GP referral assuming he has taken the cancer pathway. There are various treatment routes either surgical or non surgical and if you come back here when your route has been defined someone here can help you more. I had surgery over 3 years ago and to put it in perspective you are the age of my son. Please don't be terrified as there is plenty of room for optimism. 

thank you, my GP didn’t follow a cancer pathway .  I think because as a child I had a constricted oesophagus and surgery and  the likelihood was that this had re-emerged.  But with hindsight, I am struggling to see why cancer wasnt investigated at that point. 

I can see I need to stay away from Google ( great advice on here !) but this period of waiting is very tough.  How do folks distract themeselves whilst in limbo? I feel perfectly well at the moment.  I’d like to build myself up before treatment food wise and wonder what has helped people prior to chemo.  

And by the way, it’s great to hear you are 3 years post surgery ! X 

This is a sad but familiar story.  I was diagnosed in March with a stage 3 bulky distal oesophageal adenocarcinoma involving lesser curve of the stomach.  Like you there were issues in getting a diagnosis, different pills and wasted time at the GP,  and it was only when I sorted out an endoscopy privately that I was properly diagnosed. I went through the full range of emotions, anger, fear, sadness and anxiety. I actually felt a sense of loss as for me I felt that my old life had died when I was diagnosed.  I realize that now but did not at the time.

It was an effort but I had to put the anger aside as every ounce of positivity is required to fight this disease.  I am 59 and for me due to the location of the tumor and spread to the stomach although it was hoped that I could have surgery it was not an option.  I found it hard telling the children and grandchildren and it hit them very hard but now we are in a better place and you cant do this on your own. you will need your husband, cancer does things to the mind as well as your body and talking it through with someone who knows you will help hugely. Regarding other family members,  I have said this before and I will repeat it, do not try to manage their feelings, "you have to do you and they will have to do them".  friends and family will be well meaning and want to support and get updates. I use whatsapp, a few lines on how I am feeling saves repeating the same phone call several times.  

Whichever road you go down it will be tough but you will get through if you prioritize "you" and harness your strength. Turn your natural anger into determination. Focus on trying to maintain weight and food and use the macmillan telephone support as a positive alternative to googling stuff.  There are lots of folks on here that have been on the same road as you and still on it many years after diagnosis, 

Regards

Richard

The most important thing to do is to get yourself as fit as possible. This will be important whatever treatment route is devised for you. Also it is a good distraction. As regards foodstuff there are umpteen suggestions from past  contributors on this site. Fortified milk shakes seem to be popular. Also if you ring your GI nurse practioner they will put you in contact with a dietician. You will feel better mentally once you get through this prediagnosis waiting stage. 

Hello .

what stage have you been giving and where is the tumour ?. I’m guessing it’s mid oesophagus as you have squamous cell . I am similar age to you ( 56 when diagnosed ) and can give you lots of advice if you want . Squamous cell is usually treated with chemo radiation rather than surgery but obviously you don’t have all the information yet . I was as late a stage three as you can get. Now more than two years in remission . When you have a bit more info about your staging and treatment plan i’m more than happy to give any advice and share any info that may be helpful as squamous cell is a different process to other oesophageal cancers 

Ps i had a six week delay between diagnosis and start of treatment and it made no difference. I’m a private patient for the whole of my treatment so didn’t have the issues you had but had to have specialist bloods as I have a protein variant which delayed things.

 

That's interesting. I always thought it was only the NHS who had the setup to do chemotherapy etc? Who is your healthcare provider please?

I’m still awaiting PET scan this week to confirm that it hasn’t spread. Everything crossed.  Thank you I’d very much like some more advice and to hear more about your experience . 

Most major hospitals have private cancer treatment . I’m a private patient at The Royal Marsden. They have separate treatment areas and private wards mainly at the Sutton branch but UCl also have private patient departments.  Then lots of smaller private hospitals such as Spire and Nuffield do it as well but tbh if you’re thinking of going private then it is far better to go to a large NHS cancer hospital that also has private patient provision like the Royal Marsden as they have access to emergency care as well that the smaller private hospitals do not