Putting it out there to my networks - Pyloric Stenosis, anyone???? Also, be your own advocate

Nadi Member Posts: 619
Hi all

I got my 4 year all clear mammogram and ultrasound in October (Yay). But some of you know that after BC treatment (surgery, chemo, radiation, Herceptin) was finished I was diagnosed with Achalasia a disease that makes it difficult for food to get into the stomach. 

I had major surgery for Achalasia last year. Things were good for a while. Then in the last couple of months I had severe bloating and several ambulance trips to hospital with the worst abdominal pain I've ever experienced in my life. I found myself back on the medical roller coaster for the third time. Scans showed a thickening in my small intestine. However, the CT I had last week showed nothing abnormal. Finally, after an endoscopy, on Friday I was diagnosed with Pyloric Stenosis - a condition which is apparently rare in adults, that blocks food leaving the stomach.

I just want to reach out to anyone who has, or know of someone who has Pyloric Stenosis. It's hard to make decisions about surgery if I can't find information on what others have personally experienced. I would be grateful to hear from anyone.

I also want to emphasise how important it has been for me to be my own health advocate. It took ages for me to be diagnosed with Achalasia and thankfully I was only stage 2.  I had Achalasia symptoms for 2-3 years before being diagnosed with BC. During BC treatment all my Achalasia symptoms were put down to side effects of chemo or radiation. Nobody was even looking for something else, despite me telling them I thought something was going on.  With BC, despite me being the one to find changes in my breast during a self exam I was initially told it was nothing as it wasn't a lump, just a thickening, and chances were it was nothing as I wasn't 50. This third time round even with an abnormal scan from back in August 2018 and problems that were escalating over a few months, the doctors still thought my symptoms could be  par-for-the-course side effect of chemo that I had in 2016!  It's only when I kept on going back to my specialists that they finally did extra tests and the endoscopy which showed that the scans were correct and there was a physical abnormality that explained all my symptoms.

I used to feel silly when I would tell a doctor I thought something was wrong. But now I acknowledge that I know my own body better than the medical professionals and it serves me well to listen to it. I will never feel silly again.

Wishing you all the very best.



  • Afraser
    Afraser Member Posts: 4,328
    Increasing specialisation and complex treatments can make people feel very wary of questioning a medical opinion. But even good doctors can miss something, particularly when side effects of treatment are as many and varied as they are for cancer. Good for you! Never feel silly. No good doctor should shrink from explaining the rationale for a diagnosis. Although the cheerful dismissal of any lump-less problem because of ‘not being 50’ is plain negligent. I am eternally grateful to a GP who decided that, even with no lump, my slightly pink breast required ‘someone who knows more about breasts than I do’ and found said someone immediately! Best wishes with your further treatment and hope you have a good outcome. 
  • primek
    primek Member Posts: 5,392
    It's very easy to explain all symptoms and issues on chemo or oral medications. Sometimes they are but they should always be thoroughly checked before concluding this. I haven't had personal experience but wish you the best and hope 2020 gas you moving forward to a period of wellness. 

    I did find this group which might be helpful 

  • arpie
    arpie Member Posts: 7,454
    Deep down, @Nadi - we ALL know when something is seriously wrong ... and hope that our GP/specialist takes our concerns seriously.  

    Good that you finally have a diagnosis.

    What will the surgery entail?  My husband had his pylorus removed due to stomach cancer, also his pancreas relocated as well.  He was back eating normal meals within 4 months of surgery (using all the tips I’d mentioned to you in previous PMs.) .... and he went on to compete in international triathlons, winning his age group most times. 

    All the best  xxxx
  • iserbrown
    iserbrown Member Posts: 5,511
    Hi @Nadi
    Pleased to see you here and I do hope someone can share their experience.
    Just wanted to say that hopefully the diagnosis can give you a chance at sorting it out once and for all.
    Best wishes
    Take care xx
  • Nadi
    Nadi Member Posts: 619

    arpie said:

    What will the surgery entail?  

    I have a few options. These will depend on the reason for the thickening which we should know after the biopsies come back. If it is idiopathic - no known cause - and not cancer, I can choose to try a dilation first which is the least invasive but they warned that in the few cases they have done they found that this hasn't been effective and most times more radical surgery is required. The other options are a pyloroplasty which cuts it to widen it and the other options is to remove the pylorus and duodenum.

    It is so good to know the outcomes your hubby achieved after surgery. He's an inspiration and it's stories like these that really bring me comfort. All my best to the both of you.