New to the group

Hello Claire122

Firstly welcome to this group who are incredibly  supportive.im a relative newbie myself to the kidney forum.

I'm sorry  to hear your news.

Its sounds like its early days at the moment and they will sort out a plan.the not knowing is worse than the knowing and once a plan comes into action things will get clearer.

If you want you can join other forums too once a clearer idea is in place.

I had a double mastectomy at different times  and a small so and so was found on my kidney as an incidental finding.its been monitored  so I keep an eye on this forum.my children are grown up now but we are open  about things.you will find your way to talk to them.

Wishing  you and your family all the best.

Thank you, this was found purely by accident on the CT he was having for his thyroid, he’s had no symptoms at all so it’s a huge shock, we’re hoping it’s been caught early and once they whip it out it’ll be fine.  

I think we’re reading lots of info online but without knowing what we’re really looking for. 

I hope yours behaves itself!

Hi Claire, you are both in shock and this is in a lot of ways the worst time, trying to take everything in and dealing with all the fear and uncertainties. The MDT is a meeting with lots of experts so they will look at all the issues and make a plan. Then you will know more where you are and feel more in control. You just have to take things one step at a time, easy to say but in my experience, it really does help if you can try not to let your minds leap too far ahead. If it helps at all, treatments are so good now, including surgical procedures You have to trust that the team looking after your husband will take good care of him. Regarding telling your family, I think it depends on your relationships how much you say and how you think people will react. If you think they will be upset or panic, keep it brief and simple for now. But you might be surprised how much it helps to share your feelings and how much support you get. Good luck with everything.

Hiya Claire welcome to our friendly group. I agree with what others have said.  It is all so overwhelming and like ur husband one illness opened Pandoras Box to others. Mine started with heart attack, which led to discovery or my kidney cancer,  kidney abd lymph removed only to find nodes now in both lungs and now in that void of referral back to oncology. I like your husband have large goitres in my thyroid which is being looked after by meds atm. My sons still live at home and are adults and we sat as a family from the beginning sharing info gleaned from consultant. Nurses, oncology, macmillan etc. We don't mention the 'c' word I gave my tumors names rufus and lydia which lightened the load a bit. We take each day as it comes, we laugh openly and if I am low or unwell we share. Any worries they have we share. But all families work differently. But this forum hopefully will lift your spirits. Treatments seem amazing, and many peoples stories so uplifting. You have a good medical team, let them do the worrying. Take control of what u can control. One day at a time. Wishing u and ur family all the very best.

I so agree with others saying talk about it as much as you can if possible. It somehow seems a lot less scary if everyone is open, free to talk, discuss, ask questions, air ideas and express feelings. It can be very lonely for not only the patient but for family members too if they feel they have to hold back. At least, that is my experience with 2 adult sons. It is a situation we have no choice but to get on and deal with... but we do have some choice about how we approach it. It takes time of course to adjust to the news and for it to seem real .. so be kind to yourselves. Once the MDT meeting has decided their plan it becomes a bit easier and the way ahead clearer. Best of luck and use this forum to ask questions of those who gave gone before ..it helps a lot xx

Dear Claire  the biggest advice I can give...DONT LOOK ON LINE unless it is a British site from a good source ie cancer uk, macmillan etc....there is a lot of foreign information especially American stuff where care and practices are different. I scared myself so much sending me into despair convincing myself I wouldn't live long.....if u have questions or worries speak to us, your team ,macmillan....NOT the world wide Web of misinformation.   Hope this helps...hugs

I second sticking to established and reliable sources.. information is power so a bit of research from solid sources is usually a good thing for most people.