New Here - Hoping to gain an insight into the future

Hi there,

I am going through exactly the same as you, my mum had an endoscopy on the 17th Nov and they saw a 6cm tumour (29cm-35cm down) so very similar to your mums. Because of that position its most likely to be Squamous type which reacts well to chemo and radio apparently. My mum is about to start her chemo (next Thursday) so its nearly a month from the endoscopy to treatment starting. She had a PET-CT and the tumour wasn't assesed and we didn't get a staging so it said "Tx ?N1 M0" where they suggested early stage cancer with the "possibility" of a few local lymph nodes and no spread otherwise. We aren't sure why it wasnt fully assessed but early stage can be difficult to fully determine on the scans and I believe a endoscopic ultrasound would give more accuracy but they have chosen to just get on with the treatment ASAP which seems sensible. Maybe they will reassess after treatment to see where we get to. The oncologist did say surgery could be required if this doesn't do the trick but if you read about the surgery you will realise its a massive operation so hopefully we can avoid that.

My mum is 76 and the surgeon seemed to suggest surgery wouldn't be in my mums best interest so we would go down the "radical chemoradiotherapy" route which involves 6 weeks of 2x 6 hour infusions a week followed by 5 weeks of radiotherapy (10 mins a day 5 times a week). This thankfully was confirmed as a treatment with "curative intent". Apparently this course of treatment has similar success to chemo / surgery so we are happy to progress this way.

Id be very interested to know what choices your mum is given as it seems theirs are similar in size and position.

How old is your Mum and what symptoms did she have and for how long? Also does she have any other health issues?

Im wishing you all the very best, try to stay positive and hopefully you will be given a similar treatment route as we have.

Please keep in touch.

Chris

Hi Chris. Thanks for responding.  I'm sorry you're all having to go through this too. 

My mum is 65 and has an interactive thyroid, but nothing else that were aware of. 

Mum's Endoscopy was on 26 November and we won't know anymore about treatments for another two weeks. It seems crazy long to wait. 

Mum's cancer is squamous cell.  We don't know how long she's been having symptoms. Because we lost her mum, she's been putting it down to stress.  She also put the tiredness down to the under active thyroid. 

The people we've spoken to so far seem to indicate it's been there a while. 

Mum still seems to be eating ok and I've been trying to get her to go for a walk, but she's tired and doesn't really fancy going out.  She's also having the odd build up drink, to keep her calorie intake up.  She's quite thin. Again, we put the weight loss down to stress. 

I hope your mum's treatment goes ok.  I'll post back here when we know the next steps.

Take care of yourselves. 

Sara. 

Hi again, 

My Mum thinks she had mild symptoms since about August. She noticed mild pain when swallowing sometimes in her chest, sometimes in her back and sometimes under her ribs. She’s never had any actual trouble swallowing just uncomfortable feelings plus a feeling like there was a lump in her throat. She described it as feeling like a piece of apple stuck there. The thing is all these symptoms have calmed down and when we told the oncologist she didn’t seem too concerned as we were worried all these symptoms feel like it’s spread. The oncologist seemed to suggest this could be referred pain or unrelated. I just hope the scans are accurate. She has also lost about 7lbs in weight over 4 months and has now levelled out. Can I ask how much weight your Mum has lost and in what timeframe?

Waiting for the scan results is daunting. The MDT team meet once a week to discuss all new cases, and new scans need to be assessed and a report written by the radiographer prior to assessment. Ours took 9 days from scan to results.

I know exactly how you are feeling right now, just checked our dates:

Endoscopy: 17th Nov

PET-CT Scan: 23rd Nov

Results discussed with Surgeon: 2nd Dec

Treatment discussion with Oncologist: 4th Dec

Treatment start: 17th Dec (picc line insertion 16th Dec)

Hello Sara and Chris.   I sympathise with what is happeneing to your two Mums - I am a patient who has got through chemo-radio therapy for this illness all about a year later than them.  I have been lucky, and I can see no reason why your mums should not be, too.

It's been not without hitches - your can look for my posts here by seaching for my username, Fortiemac.  Suffice it to say, I've had the NHS treatment but in the end had to have a final (well, for now, final) scan done privately and the consultatnt then wrote ".... following his recent PET scan which showed no evidence of residual disease within the oesphagus and no evidence of metastatic disease".  Not a necessarily lifetime cure, obvioiusly,  but not there at the moment!  My starting point for this was about a year ago now, when I was diagnosed T2M0NO with a squamous tumour in a similar position to yoiur Mums'.  I was not fit enough for surgery so had the chemo/radioT.    So, you see, enormous progress can be made from that starting point.

The delays at the start of treatment seem to be common and, I daresay, worse now because of  The Plague,  Xmas hols, and general lack of resources.  I understand that once treatment is started it won't be interrupted.  My treatment was across the first lock-down and went OK.

Anyway, please be encouraged by what I have written here:  I am an old fellow of 74 and now looking at life pretty positively.

Put another post here if yhou have any questions or comment about things.  Best wishes to you and youir Mums.

Malcolm

Hi Malcolm. 

Thank you for responding.  That's great news to read a positive story. I am so pleased for you.  Long may it continue!!  I hope we can get to this stage one day in the near future. 

It's so hard not to think negatively at the moment, with all the uncertainty for us. 

Take care and stay well. 

Best wishes, Sara.

Hi Chris. 

Our stories sound very similar.  My mum has also been getting pain in her back, side and ribcage. She's convinced it's spread to her lungs. 

I am not too sure how much weight she has lost over what time frame unfortunately.  She used to hate weighing herself so never owned a set of scales.  She's never been "big" but she's down to 8st 1lb and looks thin.  I've given her a set of scales now, so she can keep a track of her weight. 

Has your mum's treatment started yet?

I hope you're doing ok.  It's awful for the person going through this but equally it's hard being on the side lines.  

Take care.

Sara. 

Hi Sara,

Don’t you be worrying it’s spread to the lungs, this is highly unlikely at this stage with her symptoms 

When you get this cancer it can cause mucus from the oesophagus to regurgitate and go down the airway. This is different to trachea invasion, I’m no doctor but I’ve done my research so please take comfort in what i understand. 

my mum starts treatment next Thursday, exactly one month since diagnosis so I expect your mum to follow a similar path.

At first after reading about this cancer I set myself to doom but you have to remember statistics don’t take into consideration individual circumstances, someone who got through this on here wrote exactly that, he said something along the lines that if bill gates walked into a room of people it doesn’t automatically make them all millionaires. I thought that was a very powerful and poignant statement. Every case is different and without hope and positively what is there. In a weird kind of way I feel more positive now than I did before. Let’s fight this horrible disease together and say f**k you to cancer. I beat cancer 10 years to the day ironically and my mum and me and all of you are going to beat it again x

Thanks Chris. That is really helpful to know. 

I also like the Bill Gates analogy.  Hopefully once we get the horrible wait out of the way, things will seem more positive. 

Although I don't want to wish the time away incase the news gets worse. Life is relatively "normal" at the moment. 

I'll let you know more, when we hear. 

In the meantime, good luck with the treatment next week.  Let's hope the cancer and 2020 can f**k off soon.  :-)

Take care. 

Sara. 

Thank you Sara. I wish your Mum and yourself all the very best, you are coping with what we are going through now and can’t even imagine the range of emotions your family must be feeling right now, especially your lovely mum. All mums are superstars and that’s why we love them so much. Please stay in touch and let’s get through this together.

All my love to you, and to everyone reading this this.

be strong x