New and conflicted about surgeon options

If we are on a secrecy topic - there are several reasons for me to go this route right now. As I mentioned earlier, this is still fresh for me, and I don't know the full picture until the pathology is done. So, here we go:

1. I don't want to see pity and saddness from eveyone - it will only depress me. I don't want to talk about cancer more than I have to, my brain is full of depressing cancer thoughts as it is.  

2. I don't want my kids to find out (10 and 14). We plan to tell them after pathology, and plan to do so as gently as possible. I know it will be hard for them, but it will be worse if the news comes from someone else.

3. My mom is in her 70s with fragile health. This news will kill her, there is no way she should know. 

4. I mentioned in one of my earlier posts that I am a very private person. This diagnosis is extremely personal to me and I want to keep it private, at least for now. 

If there is a need to share this with someone, I will of course, but it should really be a necessity.

My husband was diagnosed with early onset Parkinsons two years ago - his choice was also not to tell people unless it was necessary. We are quite a couple. 

stub1969 said:

Late for the party again!!

Hi, Mila.  Wow, you've really stoked the fire with this conversation.  Like you, I'm so happy our members jumped in to offer advice from their experiences.  If you click on my "name" you'll be taken to my "About Me" page.  You'll see I was treated at a Mayo facility.  My lead surgeon was Dr. Chow.  When I first went to Mayo, I met with him and two "fellowship" surgeons on his team.  It was a little intimidating having three surgeons walk in for our initial meeting, but Dr. Chow put me at ease right away.  He answered all my questions and laid out the plan that he would follow.  I left Mayo knowing I was in good hands.  On the downside, I've never met with Dr. Chow again.  In each of my follow-up appointments, I've had members of his team meet with me--in fact, it's been a different doctor each time.  I don't feel like I'm being pushed off to the side.  The reality is I was stage 1, which doesn't garner a lot of attention.

You've also brought up some questions/topics that will require some soul-searching on your part.  Whether to tell people, talking to your kids, privacy issues.  We're all different and I'm sure you will make decisions that you are most comfortable. 

 

Wishing you only the best as you approach your surgery date. 

Stub 

  

Hi Stub,

Thank you for joining the gathering And sorry it took me a few days to respond.

I just read your story. Must have been quite a journey with two major surgeries just a month apart! How did you deal with it physchologically? I can 100% relate to your statement about seeing things differently post-diagnosis and realizing what's truly important. Exactly my feelings.

I am very glad you had a great experience at Mayo Clinic! I believe going through this is a lot easier when you have a strong medical team. For myself I decided that if anything returns post-surgery, I will be going to Mayo Clinic next time. This time my surgery is going to be at Emory. This forum is amazing and helped me tremendously with the decision.  

I am still struggling with the lack of information, Emory is not doing a great job here. I had my pre-op yesterday and couldn't get half of my questions answered. I will be writing to the Dr again, but given his 1-2 word answers, I don't expect much clarity. Another thing, they didn't give me diet instructions. I was handed a generic Emory surgery handbook (for all types of surgeries), and all it said was  "Have a light supper the night before surgery". What about clear liquid diet? Bowel cleansing? Nothing. Neither there was any info regarding whether I should pack a bag to take to the hospital, what to pack, etc.  Also zero post-discharge instructions. Maybe those would be given when I am already in the hospital, but that would be too late to get everything prepared. Anyway, I wish this process was easier than it is, and I didn't have to put so much effort in getting information. I keep sticking to my opinion that Emory is about teaching and not really about patients.

In terms of privacy and sharing the c-status with others, it just shows how individual this journey is, and each of us deal with this in our own ways.

Thank you for the best wishes! it means a lot, especially since anxiety started to kick in as I get closer to the surgery. 

I'm sorry guys I've been away, time just flies too fast. I am making a list of all of your recommendations. It's also a relief that clear liquid diet is not such a must as I thought. 

Some of you recommended to get a mild laxative - which one do you recommend? I never bought this before. 

Have any of you purchased post-surgical abdominal binder/compression wrap to avoid incision hernia? What kind did you have?

Now about my news, and a_oaklee - it addresses your question.  So, I have a septated cyst as initially mentioned. The most recent scan (MRI early Jan) stated the following: "FINDINGS: There is a partially exophylic, multiseptated right renal leison within the interpolar region, measuring 4.4x3.8cm, which contains numerous slightly irregular septa which demonstrate postcontrast enhancement. No hydronephrosis.  IMPRESSION: Exophytic 4cm interpolar right renal mass, with imaging features most consistent with renal cell carcinoma".  When my urologist reviewed the images, he said it's 75% probability this is RCC. When he refered me to the urologic surgeon, the surgeon said it's actually more like 80% (or 85%? don't remember) probability this is RCC. When I asked the Emory surgeon for his prognosis, also mentioning what probabilities the other two doctors gave me, he only said "oh no, it's a lot, a lot higher than that".  

Now, for pre-op the Emory surgeon ordered me to get another set of CT scans - lungs and abdomen. These scans were done at Emory this time, i.e different place than before. On Thursday he called me and said that the new images are of better quality and based on them it could be either a cystic RCC, or even a benign cyst. This is what it said in this report: "1. 3.7 x 3.4 x 3.2 cm cystic mass interpolar right kidney with multiple internal septations could be a multilocular cystic nephroma or cystic renal cell carcinoma as described above". The description mentioned that this leison is "partially exophytic and partially endophytic extending into the renal sinus fat and has multiple enhancing septations".   He told me that this is good news/bad news. Good news - this might not even be RCC, and if it is - he doesn't think it's an aggressive type (and this is MAJOR news). Bad news - it's growing into the center of the kidney and this is going to be a difficult surgery technically. So, I'm relieved that pathology-wise my worst news shouldn't be something I feared the most, assuming he's correct. This takes a lot of stress away. Surgery-wise, there is a higher chance of losing the entire kidney. I'm also scratching my head how could the measurements be so different on two scans? 

And another thing - I finally feel good about this surgeon! He was very different on this call - kind, informative, and took his time to answer my questions.  He sounded like a doctor I would like to have. He must have had a bad day when I had my consult with him, and hopefully no more of those .