Pregnancy risks - renal cell cancer and Birt-Hogg-Dubé (BHD)

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I was diagnosed with chromophobe renal cell carcinoma last may had a partial nephrectomy in June 24. Doctor suggested genetic testing as I was on 41 and had also suffered pneumothorax in 2015 resulting in surgery. I had my first scan in Dec 24 since operation things where looking clear but doctor thinks we will see it again.  Also because of the birt hogg dube syndrome I have lung cysts a referral for monitoring has been made. Next follow-up scan on kidneys due around 6 months time. 

I went back on the contraception pill only recently and it caused a lot of problems, so doctors has scheduled me for a coil in September. During the pill  I had sex once and recently discovered I was pregnant. 

I have tried contacting specialist nurse under urology but no call back just received a message with telephone appointment with one of the consultants in October. My question for them am I ask risk continuing with a pregnancy or do I need to terminate. I worry there are too many risks but can't seem to get to speak to anyone in regards to help with this question.

  • Thank you for getting in touch with us at Macmillan Cancer Support. My name is Debra and I’m one of the Cancer Information Nurse Specialists on the Macmillan Support Line.

    I’m sorry to hear that you have Birt Hogg Dube (BHD) syndrome and a subsequent kidney cancer. I’m glad to hear that your surgery was successful, but unfortunately as you say there is a likelihood of recurrence.

    Whilst BHD doesn’t cause any direct complications in pregnancy, your lung cysts may increase the risk of pneumothorax so you would require careful monitoring.

    Therefore, I would advise you to contact your GP immediately for advice/discussion. Also, please keep trying your specialist nurse and your consultant as they are the best people to advise you. When you speak to the consultant/secretary please make sure they are aware of the pregnancy and that time is a crucial factor in regard to both monitoring and/or terminating the pregnancy.

     

    Best wishes

    Debra

    Cancer Information Nurse Specialist

    You can also speak with the Macmillan Support Line team of experts by phoning 0808 808 0000, calls are free, and lines are open 8am-8pm, 7 days a week, or you can send us an email or use webchat.

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