Hello, my relative had an endoscopy which found an 8cm tumour and they’ve taken 10 biopsies. He has w PET scan in a few days. 8cm seems big and I’m unsure where this puts him in terms of prognosis/spread. I wondered how long it can take for results following the PET scan if anyone has experience?
Thanks.
I am 5 years post esophagectomy, It’s probably 4 years since my last pet scan but here in the states I believe the results are published within 24 hours.
Best of luck to your relative.
a lot depends on if it malignant. I had stage 4 tumor about 8 cm and had an Ivor Lewis esophagectomy after chemotherapy and radiation. I’m now 5 years cancer free. If you are stateside I suggest going to Anschutz Cancer Treatment Center in Aurora CO as they are the best in the Nation.
I had a PET scan just before Christmas and I am still waiting for the results, I’m sure this is not normal as they told me when I had the scan 2 weeks. Nothing to worry about the scan, it’s a little noisy, but not like the MRI, it’s more like a CT. Good luck hope everything goes well
Mikerd20
Hi Sar,
8cm is not small, but mine was 13cm and I'm 4 years post op and doing really well. I was lucky that it hadn't spread from the osopheagus.
In my experience in the UK, once the diagnosis comes in, everything moves very quickly and efficiently.
At this stage I would expect to hear the results of the scan within a day or two.
Best of luck,
Dan
Thanks so much Dan. Yes things are moving really fast, it’s all a bit of a whirlwind. He’s been getting food stuck a lot which is understandable now and they said there was a lot stuck round it when they did the endoscopy. I can’t remember where it said the position of it was but it’s not near the throat it’s further down so hoping it’s in a good position for surgery maybe.
Regardless of where it is in the length of the osopheagus they should be able to operate. However, if it has spread through the wall of the osopheagus to other areas, that's when it becomes more tricky.
Is your relative in the UK, and if so, where abouts?
yes it’s my dad, he’ll go under leeds. Yes my worry is it’s spread as he seems to have been having these issues quite a while but didn’t go to the GP until a bit later then the GP “forgot” to do the referral so I’d sent him for a private appointment and then he got sent to nhs endoscopy within days and it’s gone really fast since then.
I had symptoms (hiccuping when eating, then struggling to swallow) for about 3 months, then went to the GP who told me to take Gaviscon which wasted another month.
I was treated in Sussex so can't give any advice about surgeons really. However, mine explained that he took the view that you get one shot at surgery and so he always removed more lymph nodes than others might.
Another thing I did that I felt helped was to make use of the complimentary therapies offered by MacMillan. Helped to keep me relaxed, positive, and feeling I was doing something to help. I also focused on my diet, removed sugar as much as possible, and ingredients classed as 'inflammatory'.
The doctors sniggered but again, helped me feel that I was contributing to my outcome.
Best of luck to your Dad.
Thanks so much for the replies. It’s a lot to take in isn’t it. It’s hard to know how serious it is until we have the PET scan results but I figured from the endoscopy saying 8cm and 10 biopsies that’s pretty significant!
Hi Sar, I'm sorry to hear what your relative and you/the family are having to deal with! Yes, it shouldn't take long afterwards to get the results/ staging - but, in the event that it is malignant, that'll help them determine the treatment mode they recommend.
To put a bit more 'meat on the bone' in case they CAN'T operate? ( you rightly feel worried about the 8 cms! Don't worry about the no. of biopsies - a good MOT!) - the TNM staging will give you the No. of Tumours (T), Lymph nodes (N) and any Metastasis (M = spread) which they'll also take into account when determining appropriate treatment. Also, the type of cancer cell (Adenocarcinoma or Squamous Cell Carcinoma(SCC) , which may react differently to Radio/Chemo if required) plus exactly where it is / how many cm's it is away from other organs (e.g. heart & lungs).
In my case, due to poor medical response from initial GP appt. onwards, it ended up being 4.5 mths. from GP to Endoscopy for me, which meant the tumour was "locally advanced". They advised that they needed 2 cms. clearance - but only had a 1 cm. margin - so couldn't operate [I had SCC, 10 cms. lower down - T3/4a,N1,M0] so was treated with Combined Radical Chemo/Radio instead,12 years ago]. Consequently, they monitored me afterwards for any recurrence - with Endoscopies and alternate CT/PET scans during the next 5 yrs. Brilliant medics/specialists who gave me my life back (:)!
If they CAN have the Op. it is serious (c. 8 hrs) and can have complications - but they can deal with these. The 'benefit' of the Op v Chemo/Radio is that they can remove it all v potential for recurrence. They have to be honest with you - and give you the worst case scenario, frightening as it may be!
I do wish your relative well! Knowledge is power - we naturally fear the worst with anything new/shocking! IF they can muster a positive mental attitude, it will definitely help their outcome (
not sure if can help, when I spoke to the secretary to confirm some things on the report she said it doesn’t say 8cm anywhere it says sirable (that may be heard or spelt wrong) lesion 35-41cm. Does that mean the lump as such is that big or that’s where it is along the oesophagus?
Haven't heard the term 'sirable', Sar and can't guess any similar word.
makes sense to me yes, not sure if that’s good or bad but guessing it’s likely it could be heading into stomach.
If so, they'll have picked that up on the Endoscopy, Sar - since they pass the 'scope down through the GOJ [GastroOesophagealJunction] into the stomach and possibly the Duodenum. Some of the biopsies would've been taken from the stomach (The 1 page report given out after Endoscopy should give a diagram of where they were taken from?).
I don’t know what we did with the report paper they gave us which I why I called them. The follow up is on 9th so will know more then. And do they give the biopsy results and staging then or is that oncology that so that?
thanks so much for the in-depth reply and also hope!
PET is to help determine if any spread, the biopsies will give a picture of malignancy status now, which you should already have. My best wishes.
Hi Sar, sorry to hear about your Dad but stay positive! I was diagnosed in the middle of lockdown and my Pet scan results took about 10 days. My first appointment was with the surgeons, the nutritionist was there too. They talked me though my results and my treatment options that was chemotherapy, radiotherapy and Ivor Lewis. I’m sure this is what will happen for your Dad on the 9th. I then had a video consult with my oncologist and all the health tests for surgery. I was diagnosed just before my 51st birthday. Here to help of you have any questions. Good luck next week. Sue
Thank you. The McMillan nurse rang me actually and they said we will get grading and if any spread news on the 9th then go under the specialist team as it’s a rarer cancer for the local hospital. They’ve been so amazing! I’ve found a charity hike for McMillan that I want to sign up to do already and it’s on fathers, couldn’t be better meaning!
Hi Sar, sorry, didn't see your last Q's - which have been answered for you above, anyway. You should be able to collect various McMillan books from the hospital re: this tumour. There's also the OPA based in the Midlands (Oesophageal Patients' Association) - a charity who can provide advice, etc. They do hold some meetings, too, each year - one coming up for Carers - but too far away for you! Even basics like cards to show a venue if patient needs use of a loo urgently - or can only manage a child's meal portion when eating out. You can ask restaurants to blend a meal if struggling with swallowing, etc.
The thinking is, even though it may be a distance, to DEFINITELY travel to a hospital who specialises in this Cancer, since they're carrying out the surgery more frequently/gain expertise.
I had results in 10 days. SQUAMOUS CELL CARVINOMA
Sorry to hear that, is there a plan going forwards? sending lots of positive thoughts for you! We get all of ours Thursday. Not sure if it’s squamous or the other one yet either.
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