Gastro-Oesophageal Cancer

FormerMember
FormerMember
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Recently within last Month Sep/Aug been diagnosed with Gastro-Oesophageal Cancer following an endoscopy to investigate swallowing difficulties. 

The endoscopy showed tumors in lower Oesophagus and the recommendation was for a Stent insertion which was quickly organised and carried out and which has resulted in a much improved eating regime.

Other tests showed the onset of Metastatic infection in some other organs.  The Prognosis is untreatable/incurable terminal with Chemo as an intervention.

Because of the late diagnosis the prognosis was not so good  6-9 months untreated which seems to be a common figure going around. 

Now after a whirlwind few weeks of further tests and scans and information overload  I am informed that I have rare 1:6 mutated gene and not only that a low score on the DPD enzyme.

In consultation with the Oncology Dept  I had opted to go with HCX Chemo treatment prior to learning about the enzyme deficiency. To start mid Sept.

Have subsequently researched and discovered that the lack of the enzyme is likely to cause more pronounced side-effects.

Now concerned that I may be putting my self in the position of suffering extended side effects for very little gain vs a perhaps shorter time of better quality of life, currently having no symptoms whatsoever of the cancer.

Going to have to make a hard decision soon on whether risking highly probable side effects with no guarantee of any successful outcome is a choice or whether or not to see it out as is enjoying a higher quality of life for the time remaining.

I realise this is a very personal decision that I have to make for myself.  I am continuing to consult with the Oncology team but realise that they are limited in any advice that they can give.

Wondering if anyone else with DPD deficiency who opted for Chemo could shed some light on their experience.

per Ardua

Rockape 106

  • Hello Rockape 106

    Welcome to the OC forum, I am truly sorry to read that you have been given an OC diagnosis, that also has highlighted additional issues including the DPD deficiency, (I was not aware of that deficiency and have referred to Cancer Research UK Website to see what actions are being undertaken to combat this Pray

    My husband was diagnoses in May 2020, given prognosis of 4 months without treatment, 12 months with!, he is on chemo and immunotherapy fortnightly and has recently returned to working from home, now 3 days a week.  He does not have the deficiency as far as we are aware, so I am unable to comment, but I did want to show that the prognosis is not always right. 

    I would have imagined that as the treatment offered to you will take into account the known side effects, my husband had one of his treatments stopped due to side effects that were uncomfortable for him, hopefully they will do the same for you? Have they tested to see whether you are HER2 positive yet?

    You may get some further support from the ASK A Nurse section of this site. Or maybe you could call the helpline, (number below in my signature) and talk to someone, which may help you with the difficult decision that you are having to make.

    I wish you all the best, and want you to know we are here for you if you would like to chat.

    Lowe'

    Call the helpline for free on 08088080000, 8am to 8pm everyday.
    Tomorrow is not promised but it always has potential. Aim for your potential!
  • FormerMember
    FormerMember in reply to Lowedal

    Thanks for that, Lowedal...  the option was there to continue 'Chemo' but at reduced strength.. but then over an extended period,  with still possibility of severe side affects as the DPD enzyme level I have is low.  In consultation.

    Cheers 

  • Good Luck Fingers crossed

    Call the helpline for free on 08088080000, 8am to 8pm everyday.
    Tomorrow is not promised but it always has potential. Aim for your potential!