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What to expect at our first oncologist appt?

MrsJoeyMrsJoey
in Special Needs

My son has Hirschsprungs disease (HD) and we had some genetic testing done and the results came back that he had a rare mutation in his RET gene that they are unsure of what it may cause so we have to see an oncologist every 6 months. From what I have read/been told from his surgeon is that his HD has a connection with Thyroid cancer.

We have to go to see an oncologist tomorrow, just wondering what to expect. Hoping to not have anything but good news, but trying to prepare for bad news too I guess. TIA

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Re: What to expect at our first oncologist appt?

  • meghans30meghans30 member

    My son was followed by a pediatric oncologist for about 3 years after being dx. with a rare blood disorder at 6 weeks old. Whenever we went they did a standard exam followed by blood work. Going to an oncologist was pretty scary at first, but the staff was amazing and always treated our son and us very well. They became part of our family.

    I hope everything turns out ok and that your experience is a pleasant one (as pleasant as a visit to an oncologist can be anyway). 

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  • baylorflamingobaylorflamingo

    I'm sorry you're going through this, but it sounds like you're doing everything you can to cover your bases and make sure your son is getting the best care.

    For us, we have been seeing an oncologist for DS to test for and confirm a von Willebrand diagnosis. The biggest shock to me was realizing that our appointments wouldn't be in an office setting, but instead in a hospital in the pediatric cancer ward and seeing and experiencing everything that goes with being on that floor. I know that will be different from doctor to doctor or hospital to hospital, but it was the biggest shock for me and DH and is something to be aware of.

    Baby Birthday Ticker Ticker
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  • MrsJoeyMrsJoey
    Thanks ladies. It wasn't too bad today. My son is getting botox injections in his butt on friday for his HD so they are just going to do the tests then since he will be asleep. They are working really hard to keep him from getting any more tramautized then he already is and want to keep our visits to the hospital down to a little, so they are going to co-ordinate care with his surgeon. Very nice staff. I guess he is at a risk for 2 different cancers so we will need screened every 6 months. I'm keeping positive that he won't get either of the 2. Thanks again for the info.
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  • SweetMonkeySweetMonkey

    Hi MrsJoey,

    sorry to hear that he has the mutation, best of luck I hope that all turns out well.

    Do you know about this HD board?

    https://community.babycenter.com/groups/a6705975/hirschsprungs_disease_and_other_gi_disorders

    Just posting in case you did not.

     

    imageimage
    Max 4-08-08 and Michael 2-03-91 (19 years olds)
    image Both boys were born w/ hirschsprung's disease, you find yourself facing this dx, please feel free to ask me any questions.
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