Diagnosis but more uncertainty and waiting

Hi Jaxster

I am really sorry to read about this diagnosis I know how shocking and awful it is. My mum had T4N1/3M0 adenocarcinoma at the junction (lymph nodes were hard to determine). There was also unfortunate positioning around one of the blood vessels which made surgery hard. Because of that she had FLOT surgery (7 cycles upfront) and then surgery. The surgery was not a given- they didn’t know whether it would be operable until after a laparoscopy and then they did it on the day. She’s had no follow up treatment since then. It’s worth noting since it was advanced locally we had to have a second opinion, as the first set of doctors thought it would be inoperable, which changed the treatment plan to CAPOX. 
Chemo can be hard, but ultimately it did shrink it enough for surgery, which is great. Let me know if you have any questions. Sending you and your family my love 

Thank you so much for your reply. I really appreciate it. We haven't got dates for the petscan or endoscopic ultrasound yet but the nurse said it'll be a few weeks before we hear if it's operable or not. Did your Mums initial ct scan show spread or did they find any spread on the petscan? X

No worries at all xx 

It had spread to some lymph nodes (but they were all close to the stomach) and it was sort of wrapped around the vessels and was growing out and touching the pancreas which was picked up on the CT. But that was all “local” spread because the primary tumour was so big. The pet scan didn’t show any distant spread/ metastasis. In my mums case spread, size and stage were picked up by CT and PET but my mums surgeon said that he needed to see by camera (laparoscopy) to see if it was operable, the scans alone didn’t provide that info for him. That’s because post chemo it’s hard to say what’s fibrosis and what’s alive. I think in some peoples cases it might be enough to tell if it is or isn’t, it seems to be a case by case thing. The chemo worked to shrink the tumour away from the pancreas and detatch/ destroy that part, and kill the bit wrapped around the vessels, so basically it went from inoperable to operable post treatment. I’d say that it’s good that they’re doing CT PET and looking by endoscope too, they’ll have a really clear idea then of what’s going on 

Thanks so much for such a detailed reply, really helpful. When was Mum diagnosed and how's she feeling at the moment, can she eat now? Xxx

Dear Jaxster, 

I am sorry to hear about your diagnosis, it is a difficult journey with ups and downs. My husband was diagnosed with signet ring gastric cancer in 2021. He had CT and a PET scan followed by staging laparoscopy for the surgeon to decide whether it was operable. He also was T4N0M0. He then had FLOT followed by total gastrectomy and more FLOT. Staging can change after surgery and histological examination and is more precise.It changed to T3N2M0. He has struggled with eating since then, but every person is different and others have had better experiences. We are grateful he is still with us despite the struggles. Wishing you all the best on this journey and take each day as it comes.

Thanks so much, I was very much expecting the staging to change for the worst so very heartening to hear your Husbands was downgraded to T3. We are waiting for a call with advice re nutrition as he's struggling to eat and we need to keep his strength up for treatment and hopefully surgery. Life is so cruel at times but you've really helped me with your reply, thank you xx

She was diagnosed in January last year, chemo started in February and she had 7x FLOT upfront (which is slightly unusual) then surgery in July. She is okay some nerve damage from the chemo and frail compared to before, but she can go on walks drive do housework etc, she can also go pretty fast on a treadmill for her small legs! I’d say she lost muscle strength though and eating is fine but not as before. Some foods are a no (rice for some reason, tough crispy foods too) and some days are bad, she gets strange frothy secretions from her mouth and nose if she overeats. She also has three monthly scans, the second of which is at the end of the month, so hopefully it is all fine x

Hey that's so helpful and kind of you for such a detailed answer. Keeping everything crossed for Mums scan xx

Thank you!! Take care and let us know if you have any more questions/ we can provide insight into anything. For me when treatment started it felt a lot better than waiting and being nervous- the intermission periods felt a bit uncertain but when everything re staging has been sorted and the oncologists decide on a plan everything moves much more smoothly and is coordinated. Take care and sending love xx 

Thank you xxxx