Where do we start

ashmarie529

My older brother is a mid-30's male who has never had any significant health issues until yesterday. He ended up having 2 grand mal seizures within 10 hours of each other, released from one hospital after the first one and threw the second one about 9 hours after the first. The located the mass, 7.5cm x 6cm on his left kidney, via CT scan. The urologist said that with the appearance and size of the mass, it's considered cancer until a biopsy can be performed. I'm dumbfounded.

What do we do now? What kind of treatments have others had success with? What questions do we ask? Is it a PCP, urologist, or oncologist that we call first?

My brother is overwhelmed. He still has not fully recovered from the seizures. He is losing his license for at least 6 months due to the seizures, which in turn, is also the loss of his job. Any advice on how to navigate health insurance now? Are there supports coordinators or specific social workers that help navigate this stuff?

The said they can't give us a prognosis, that another doctor will do so, but he's currently admitted to the hospital monitoring the seizures and his cognitive state.

My niece is less than 10, he is not the primary parent, but they have a close relationship, when do we talk to her about this? How do we talk to her about this?

Thanks for any guidance.

eug91

Hi ashmarie529-

Sorry you had to join us here, but I'm glad you did. It's a great forum here and we know what you're going through. Your brother is lucky to have you looking out for him.

It's a shock to hear the 'c' word. But medical treatments have gotten better and better in recent years, and if a shlub like me could get through it, so can your brother.

Re: what do now. My PCP referred me to a urologist who found my tumor and did my surgery. If you're not certain, talk to the doctor - especially since the seizures are still a problem that he'll have to figure out.

Re: treatments. With kidney cancer, the usual treatment is to remove the tumor - depending on your brother's age, overall health, if the tumor has spread to the lymph nodes or elsewhere, other factors, etc.

Re: your niece. Telling my kids was the hardest part of my cancer experience. Each kid took it differently. One handled the news initially but then couldn't concentrate at school for weeks - another was really upset and still gets scared anytime I mention the word doctor - another was too young to understand and later asked us if cancer was contagious. My advice is just to tell the truth and be honest, then remember to follow up with her in the upcoming weeks to continue the conversation and make sure she feels comfortable coming to you with her questions and fears.

Two general bits of advice: 1. Beware of Doctor Google. While you want to learn what you can, there's a lot of misleading and outdated information out there on the internet. 2. Bring a notebook or your smartphone Notes app with you. The information from doctors is going to come fast and furious. Write down all the answers to refer to later. Or if you have questions that you want to ask, write them down so you won't forget to ask them.

You can do this. You've got this!

jazzgirl

Hi ashmarie529- I agree with all that eug wrote. I find him to always be careful, accurate, and compassionate in his responses. I was lucky enough to find a urologist/oncologist/surgeon in one person. Not sure what resources you are near. It sounds like your brother is beyond PCP at this point since he has seen a urologist - just so your brother finds someone he trusts and has confidence in their expertise. I asked for a second opinion after I saw the first oncologist - even within the same institution they should be ok with that and encourage it. I researched my doc's credentials and experience. Your brother (and you and all his family) has had his life turned upside down and inside out. It is a terrible lot to process, especially now with job and insurance loss. Yes, the hospital should be able to supply or help him find support, social worker, advice etc. I don't think I can post a link here, but search something like "Ways Hospital Social Workers Can Help You." I think it is really important to have someone else along for appointments, scans, etc. to help listen and to take notes (and ask questions). I was so full of fear and anxiety that it was hard to focus and pay attention. Keep a notebook with questions and answers. Yes, tell the kids - different level of information for each age range, but tell them. I am so sorry you are all going through this. As eug said, this forum is a great place to come for peer and family support. Please keep us informed. Take care ~

Deanie0916

Hi ashmarie529, so sorry you and your brother are going through all this. I don't have more to add but want you to know we are here for you during this journey. Please keep reaching out. Sending prayers and love as you go forward. ❤️

ashmarie529

https://csn.cancer.org/discussion/comment/1707833#Comment_1707833

Thanks so much! We've a quite a few appointments the past week, but things seem to be moving quickly. The doctor said T2, so stage 2. They did another CT scan just to be sure, it doesn't look like it's spread, which is the best news possible, especially since it's size. The new CT scan is ready, just not read, his PCP showed us the CT scan, she had limited understanding, but his kidney is far higher and wider at the top, it shows up much higher than his other kidney. It honestly looks like it's wearing a Giant mushroom hat, and then returns back to normal at the bottom.

The urologist should be able to give us better guidance, hopefully they can find a spot soon, he's scheduled quite far out.

I appreciate the information. Definitely a learning curve for us!

ForestAria

Hi! My heart goes out to you all. it’s daunting. I know. I second looking into the social worker at the facility that you go to if there is one. I was at a small town facility and there was no such thing. I moved to Seattle to get better care and I would up and move back to Seattle in a heartbeat if I could. The difference in care is huge!

I had the same size tumor but it was just barely in the renal vein so it was stage 3.

After surgery a specimen will be sent to a pathologist and then you will find out what grade it is. Mine was grade three. I was diagnosed in 2017. I am still receiving keytruda and lenvima combo. It really helps. I had very little bad symptoms but I will tell you it is a huge slog. If at all possible a caregiver would be terrific. I can’t imagine raising a kid with this. I am in my 50’s.

If they do surgery, which I believe they will, make sure it is robotic if at all possible. There is supposed to be a world of difference between robotic and the old fashioned way.

One is in the healing time which is shorter for robotic. The other difference is in the amount of pain and discomfort you feel upon awakening. I have a scar that is about 7 inches and I would have done it differently if I had the choice as a one inch wound beats a 7 inch or so one hands down !

Just being real.

Forest

ashmarie529

https://csn.cancer.org/discussion/comment/1708177#Comment_1708177

They've decided on a hand assisted robotic nephrectomy due to the size. It looks like the tumor has grown a node that 4×3×3 and the original tumor is 8×7×7. He's trying to keep his spirits up. They're planning on a September surgery date, but they have scheduled an exact date yet.

Allochka

Hello,

I am sorry to hear about your brother. It is a very good indication that doctors believe it hasn't spread. Prognosis for T2 is a good one. But more will be clear after surgery and pathology

Please advise if it was investigated why your brother had seizures? Did he have MRI? This definitely should be looked into

Good luck to your family!

RenalDietitian

Hello, how is your brother? Did surgery go ok? I’m new and will have my left kidney removed by robotic surgery as well on 1/16. Mine is about the same size. I’m 47. Is there any advice you could share with me to prepare?

I hope he is recovering well and needs no further treatment.