Hello first time posting and still digesting news. My partner has an adrenal tumour, we are still waiting for confirmation but it looks like it is Adrenal cortical cancer rather than Pheochromocytoma.
I believe the bone metts are less treatable in this instance, but I am looking at any success stories, any hope, and any recommendations for any other treatments or trials here or abroad.
Dear Natcm89
Thank you for contacting us here at Macmillan Cancer Support. My name is Rae and I am a Cancer Information Nurse Specialist.
It sounds like a challenging time for you both at the moment.
Adrenal cortical cancer is a very rare cancer. It is difficult to say which cancer is more or less responsive to treatment, adrenal cortical cancer or pheochromocytoma, as this can vary based on individual patient factors and the extent of the disease.
There is a Adrenocortical Cancer Support and Information Group. They have a comprehensive booklet that you may wish to access and a telephone number to call for further information. They also have part of their website to share patient stories. They have peer support available through a private Facebook group and also support meetings. A free counselling service is also available.
Cancer Research have the facility to search for trials. Your partners consultant will be able to talk you through whether there are any trials available. We do not have the facilities to give information about trials outside of the UK. There is the World Health Organisation (WHO) International Clinical Trials Registry Platform (ICTRP).
We have information on our website about supporting someone. It is very important to take time to care for yourself, as well as your partner. We are here to support you and you are welcome to talk to our nurses at any point. Our support line is open 7 days a week 8am to 8pm.
Best wishes
Rae, Cancer Information Nurse Specialist
You can also speak with the Macmillan Support Line team of experts. Phone free on 0808 808 0000 (7 days a week, 8am-8pm) or send us an email.
Ref/RH/AT
