special thanks to progenics for making this webinar series possible through an educational grant.
The information presented on this webinar is for educational purposes only and should not substitute the advice of your doctor(s) and medical team because they have in-depth knowledge of your medical history and current situation.
See list of questions and video timing below.
29:20 – Is there a correlation between pregnancy and tumor development?
30:01 – Is there any research that shows an undiagnosed pheo or para during a pregnancy can have effects on the baby?
32:17 – I had a pheo about 10 years ago and no genetic mutation was found. We would like to have a baby. Should I get genetic testing done again?
33:34 – What specialists should I have involved? I am pregnant and have a functioning pheo.
34:54 – I am just about to go through IVF and I have a genetic mutation. I have heard of stories of tumors returning after getting IVF treatment. Does IVF increase the risk of developing a pheo?
35:47 – I was pregnant with a pheo, had a successful pregnancy and now have a healthy 2-year old. We won’t know her genetic status. When should we get her tested. I have an SDHB genetic mutation.
37:30 – Should children get tested throughout their life if they originally negative for the mutation?
38:55 – Can you have normal metanephrine levels if you are not having an episode?
42:06 – I had a large 16cm pheo removed while five months pregnant in 2019 and had a C-section. We were thinking about having a second child. Would you advise for a test to be ran again to make sure there are no issues? Would you think it is reasonable to request a C-section again?
43:41 – You mentioned in your presentation that 95% of PPGL’s in your study were functioning, is this the same as in the general population?
44:55 – Can you talk a little bit about the NF1 mutation. Does it affect kids more than adults?
47:00 – Are there any risks in pregnancy even after pheo or para has been removed?
48:00 – Should everyone who is diagnosed get genetic testing?
49:55 – I have a son with metastatic PPGL and SDHB mutation. His father also has the SDHB mutation. His brother does not. Can the brother who does not have the mutation pass it on to his offspring?
50:44 – Do you have preference for phenoxybenzamine or doxasozin during pregnancy? Do you think it has any affect on the unborn child?
52:04 – I have SDHD and was diagnosed with non-secreting para at age 20. I know that these tumors aren’t passed on from the mother often, but what are my chances of passing it on?
53:25 – Is there data on women with history of pheochromocytoma to develop fibromyalgia after pregnancy?