Caregiver Support Group Meetings

I will be/already am sole caregiver for someone recently diagnosed with stomach cancer. Neither of us has any experience with managing getting all the diagnostic testing done so I have a few questions about what we should tolerate and what to push back against. Promptly after the tumor was identified, she called to schedule an appointment with an oncologist. The appointment was 2 weeks out. At that appointment, she was told to schedule a PET scan, Among other things. The PETscan is another 2 weeks out. This means about a month going by without knowing what the stage is. Is that routine? Second question, I think she should be seeing stomach cancer specialists, not a general oncologist and general stomach surgeon. Do you agree? Many thanks

@dpcaring4

I hear your anguish. I see my husband conflicted and concerned for my rare stomach cancer diagnosed this Spring. Suggestion: keep your local medical oncologist and PCP as Mayo suggests that, if you’ve yet to initially consult them for their second opinion. When accepted, you’d be assigned Mayo oncologists, medical and surgical. Expect multiple oncokogists depending on how many teams are local working with Mayo (I have a total of 3.) Consider this, if you want, an educational journey you both take together.
To your first point, waits between procedures ARE long. PCPs, btw, deal with referrals with specialists who call YOU to schedule. Between my initial ultrasound and endoscopy, we waited 2 months to travel to my (added) second oncologist team. I was frantic, not hearing any update or responses to when to book travel. Suggestion: use wait periods to reearch ad nauseum; read dr’s med lingo-heavy clinical notes, circle terms to browse online for definitions. Yes, it is time-intensive for both of you. But this also EMPOWERS you with knowledge to speak up at dr visits. And any doldrums must be overcome to stay focused on both your challenges through this time. FYI: mine is large, rare, incurable in an older age group. That’s how deep my research has been. We can only hope with this message others may be diligent for their partner’s sense of peace through KNOWLEDGE, and with that, both your own peace to CONTROL her treatment. Prayers heading your way, travelers. Jayb

Thank you so much, Jayb, for your thoughtful reply. It was very helpful. Best wishes to you on this journey, too.