Questions from a nervous Mellie- Updated

Melliebean said:

Questions?

I hope your husband is on the road to recovery.  I know I am feeling a bit better this evening. My doctor contacted me and I was able to ask some more questions and he has put me much more at ease now. I should have been more patient.  I think I have felt bad for so long I just wanted an answer. It's one of those feeling bad where really when people ask what's wrong all you can say is I just don't feel good and I'm tired. I was beginning to think it was in my head.

This morning the doctor had mentioned a partial nepherectomy for me but after going back over my CT scans it's going to be a full. they are suppose to call and schedule it tomorrow. I was so nervous when surgery was mentioned I was trembling all over. But I have calmed now it has to be done and I know all will be well.

What questions do I need to be asking?  He mentioned doing it from the side because of some enlarged blood dialiated blood vessels in my abdomen. I questioned him about one kidney being enough for my lymphedema. I questioned him about the medications I take that help my kidneys keep the water off my body. I told him about all the complications from my last surgery.

Now what questions do I need to be asking that I have no clue to ask about I know there has got to be a bunch?  

make sure you have someone with you that can remain calm and ask dispassionately questions.

Stress, the new diagnosis, the word cancer takes getting used to and I guarantee you will not remember much.

in our case, my husband insisted on going to the first meeting by himself; the doctor is some pompous **** I had dealt with before but in our county, he is the head honcho. So, the day before a long 4th of July weekend, he told my husband that he had at most a year and would be lucky to be around for Christmas. I spent the weekend researching as much as I could and connected with the Mayo Clinic.

after the weekend, I lined up second and third opinions then went with my husband to the radiologist, a urologist, and a neurosurgeon. None of these had any experience in oncology, let alone renal cancer.

i read all of the reports and by the time we met with the Ucla docs, I could ask questions which led to more questions. As the days went on, we made a plan.

my husband is doing well these days; he has scans every 3 months which will change to 4 if the next one is clean. He is stage 4 so mortality has broken into our home. 

Sarah

foxhd said:

The hardest part

is the wait. The uncertainty is murder. But once you get through the surgery things get soooo...much better. Accepting these changes is challenging. But we have all been there. Have you noticed the lower stress on the experienced forum members? And not everyone is doing well. Committ to doing your best and try to make everyones job easier. It comes back around.

Mellie,

I have just read your posts. What an ordeal for you!! Like Ron said, I am sorry you went through the whole biopsy thing. They should just operate. That was an unnecessary and expensive step. But what is done is done. I am glad you are feeling comfortable to post your thoughts on here - and best yet is you are using your sense of humour!! But please do some research and get yourself a good doctor! Try not to worry too much - and keep writing!

Hugs

Jojo

Melliebean said:

Thanks JoJo

I had questioned the biopsy because I knew it was normally skipped. But they insisted. my mom says it's all a money thing but I don't like saying things like that.  I'll keep writing. It's what I like to do. 

I doubt it is a money thing... it is ignorance...  This is why a proper specialist is needed, they KNOW what the general doctor doesn't.  We see this all too often around here.. extra procedures and wrong procedures due to the lack of experience.  Once you get to the "A" level team, things go smoother and the results improve.

Good Luck..!

Ron

I too am overweight and had concerns about surgery.  I opted for a biopsy after both CT and MRI didn’t definitely say RCC.  The biopsy was painless and did confirm the RCC.  Also never having surgery before I was very nervous but my urologist at Dr. Phillips Hospital in Orlando, FL was fantastic at making me feel at ease.  He did the surgery robotically on a Monday, I went home on Wednesday and on Sunday went to a concert at Sea World.  I did use my dad’s power wheelchair because I didn’t feel that I could do all the walking I would need to get to the concert but with the wheelchair it was a piece of cake.  My recommendation would be to find a doctor that does robotic surgery with great success over having an open surgery.

Good luck and remember everyone here has been where you are now,

Cindy

Melliebean said:

Surgery

That is one thing that is on my list to ask next time I speak with the doctor is wether it's open, lap, or robotic.  He said he would be going in from the side. I do know that. 

I am not sure why people worry about what procedure will be used to remove the cancer. Let the doctor decide. Then it is your job to get better. To me, it is completely insignificant. In 6 months when you look back, it just won't have mattered. Why put yourself through the stress? I say this in a kind, supportive way.

Melliebean said:

I understand

Main reason I worry how it is done is because my last surgery was open and I had so many complications it took me 33 days in the hospital A wound vac home health and the wound center another four months to heal it up all tha way. That cavern in my abdomen was a monster. And now to top it all off that monster (hernia from that surgery) and the kidney surgery is being done at the same time. would be much nicer to know it's being done laparoscopiic or robotic. My gall bladder was done lap and no complications.

that you are going to go through the most important procedure for you and your family. Tell yourself that you look forward to managing this surgery and look forward to a long healthy life because of it. Keep it all positive. You know you will do fine. You will meet this challenge with the advantage of knowing that when you recover, the future will be so bright that you will have to wear sunglasses. Then hold on to that thought tightly. It will all be behind you soon enough.