Possibility of total gastrectomy linked to CDH1 mutation

Options
Anonymous
Anonymous Member Posts: 1,376
edited April 2021 in Diagnosed and Waiting for Test Results
Possibility of total gastrectomy linked to CDH1 mutation
· Share on FacebookShare on Twitter

Comments

  • ltrinidad
    ltrinidad Member Posts: 45
    edited April 2021

    This may sound like a strange question, but there it goes... I am awaiting my genetic report for the usual breast cancer mutations and the hereditary diffuse gastric cancer ones (CDH1, etc). I was just diagnosed with unilateral ILC, positive to estrogen and progesterone, I am 47 years old and have a history of gastric cancer (father and grandmother). I have accepted more or less the possibility of having a bilateral mastectomy and total gastrectomy, but I am terrified at the thought of adding to that some hormone therapy which may debilitate me even more (after having my stomach completely removed, which already causes nutrients deficiencies and loss of bone density). Is hormone therapy still prescribed even if you have a mastectomy? What if you had a mastectomy and also your ovaries and uterus removed, would they still prescribe hormone therapy? Sorry for the long post and thank you for being out there.

    · Share on FacebookShare on Twitter
  • Beesie
    Beesie Member Posts: 12,240
    edited April 2021

    Is hormone therapy prescribed even after a MX? Yes.
    If someone had a MX and ovary removal, is hormone therapy still prescribed? Yes.

    Everyone diagnosed with invasive breast cancer faces a risk of metastasis, which is the development of a recurrence somewhere in the body beyond the breast, i.e. a distant recurrence. Even with clear nodes and no visible lymphovascular invasion, it's still possible that some breast cancer cells escaped the breast and moved into the body. Most cancers have been in the breast for 3-5 years, if not longer, before the area of cancer becomes large enough to be detected. It's during this time that some cells might move into the body, creating the possibility of a metastatic recurrence. Breast cancer that remains confined to the breast is harmless. Mets - breast cancer in the liver or bones or brain - is the problem.

    While anti-hormone therapy (endocrine therapy) is effective at reducing the risk of a localized (in the breast area) recurrence, the most important reason why Tamoxifen and AIs are prescribed is to reduce the risk of a metastatic recurrence. Because mets is a recurrence beyond the breast, a MX doesn't reduce the risk. And while ovary removal will reduce the amount of estrogen in the body, it will not eliminate estrogen in the body, and if some rogue breast cancer cells are sitting somewhere in the body, at some point they can start to grow. The role of anti-hormone therapy is to reduce that risk.

    All that said, you get to decide which treatments you take. If your cancer is small and non-aggressive, and your risk of mets is low, you can choose to pass on taking anti-hormone therapy.

    Did either your father or grandmother ever have genetic testing? If there is a genetic mutation in the family that caused their gastric cancer, and if your father has this mutation, there is only a 50% chance that you will have it too. If your father had a mutation and you don't, your risk of gastric cancer will be the same as the average person. Unless you have other information (have you already had pre-cancer issues related to the gastric cancer risk?), you might be jumping the gun to assume that you will require total gastrectomy.

    Is your genetic testing being managed by a genetic counsellor?



    · Share on FacebookShare on Twitter
  • ltrinidad
    ltrinidad Member Posts: 45
    edited April 2021

    Hi Bessie,

    Thank you as always for your detailed answer, it is so helpful.

    My father and grandmother never had any genetic testing done. Unlike most HGDC patients, they were diagnosed at a later age (my father was 67 and my grandmother was 81), but the current guidelines state that having 2 or more relatives with stomach cancer, one of them being diagnosed as "diffuse gastric cancer" (my father was), regardless of age, makes you "HGDC-like" even if you do not carry the CDH1 mutation, because researchers assume that there are other mutations that may link lobular breast cancer and diffuse gastric cancer but have not been discovered yet...

    I never had any pre-cancer issues before being diagnosed with ILC at a "young age" (before 50). When I was 20, I was treated for Helicobacter pilori, which is the number one cause of gastric cancer, but in my case it was completely eradicated back then and never came back. My father did suffer greatly from all sorts of stomach issues throughout his life.

    Yes, my genetic testing is being managed by a genetic counsellor at Memorial Sloan Kettering. I am having a consultation with a gastroenterologist to schedule an endoscopy/colonoscopy, just in case. My father suffered terribly and I cannot bear the thought of not doing anything in my power to prevent this from happening.




    · Share on FacebookShare on Twitter

Categories