New and conflicted about surgeon options

MilaQ

If we are on a secrecy topic

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

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 

  

MilaQ

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,

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. 

a_oaklee

Dealing with anxiety

I always hear people say they "compartmentalize".  I understand the concept, but Im not that good at it.  My husband is great at it.  

I think your anxiety is high and thats to be expected.  Maybe you can twist your thoughts from dread or fear of surgery, to one of relief at getting it out of you.

Also try to focus on just what is immediately happening.  I believe it makes it more manageable.  I would go shopping and get what you need for the family and yourself postop.   Dont think way into the future, just take it as it comes.

Practical thoughts:  Eat a light early supper.  Nothing spicy.  Set up a comfortable spot for you to rest at home.  Wear comfy loose clothes to the hospital.  You will be wearing them home.  Slip on shoes.  Have a rolled up towel or little pillow to use for car ride home.  Make sure you have a water bottle at home, and it wouldnt hurt to buy stool softener medicine if you are taking pain pills.  Definitely have some extra strength tylenol available.  

AliceB1950

I didn't have special diet

I didn't have special diet instructions pre-surgery except nothing to eat or drink after midnight.  I got my post-op instructions before leaving the hospital, but there wasn't much to them, just about incision care and pain control, mostly.  A lot of it is just common sense, but I've had several surgeries and kind of know the general routine.

stub1969

MilaQ said:

Hi 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. 

"How did I deal with it...."

Mila--that's a good question.  I'll be honest with you, I was a mess.  It felt like I was hit with a Mack truck.  To give you an example, I remember being wheeled into the operating room and the anesthesiologist was talking to me about the operation and introducing me to the staff...I just started crying.  I couldn't help it, the reality of the situation became so clear.  The anesthesiologist was awesome and calmed me down.  He promised me everything would be okay and that he would not leave me.  I trusted him.  From that point on, I just pulled up my big boy pants and moved forward.  After almost four years, I still don't think I'm totally over the shock and I don't think I'm being melodramatic by saying this is life-changing.  It's emotionally heavy stuff...so don't feel awkward or down because you're struggling with it.   

As far as information about the surgery and that other stuff.  Don't think too much about it.  The hospital will take care of you.  I didn't have to do any bowel cleansing or anything like that.  They gave me directions about when to have the last meal and to only drink clear liquids after a certain time.  Discharge information will come when they discharge you.  You'll have a nurse go over the information with you 1:1.  This is will be a great time to ask questions.

Things will start moving pretty quickly now.  Just ride it out and focus on getting healthy.

You'll do great!

Stub

APny

I did not have a bowel

I did not have a bowel cleansing either and was told to eat light the night before so I had chicken breast grilled and mashed potatoes. I'm really sorry Emory is not very forth coming with info; it's so important to have our questions answered. But like Stub said, don't stress over it. They'll take care of you. Often I find that the nurses are much more empathetic and more willing to answer/give info. Post-op I was told to walk a lot, drink a lot of water, and use the spirometer to keep lungs clear. No special diet but I had zero appetite afterwards anyway for about a week. Also, anesthesia can make you constipated so I was taking a mild laxative. I did go home with pain meds, I think you wrote Emory doesn't prescribe any. If you find that the over the counter stuff is not enough you can always ask your GP for a week's worth. I was on them for about 10 days post surgery. You don't want pain/discomfort to stop you from walking and moving. You may not even need it; mine was an open surgery for perhaps a bit more painful than lap/robotic but still nothing as bad as I had feared. 

a_oaklee

Septated cyst

Mila, your 1st post says you have a septated cyst.  What have you been told about that?   I understand it needs to be removed, but it can be benign, correct?  

MilaQ

I'm sorry guys I've been away

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 .

 

MilaQ

Lynn_65 said:

Just had my surgery

Just had my surgery, robotic partial nephrectomy removing approximately 20% of my left kidney, on Thursday, February 20.  I had been told some of the same things you mentioned, the placement of my mass was close to the renal vein and artery and they were afraid I may lose the whole kidney or that my surgery would have to be open. Once surgery started there was only one small vein to be reckoned with! I feel so blessed. I have 5 small incisions, the largest about 1 1/2 inches. I could have been released the next day but chose to stay another day and am glad I did. I woke up feeling better and ready to go home. We even stopped for lunch at a local restaurant on the way home.  My only pain medicine post op has been Tylenol every 6 hours. My doctor is brief and to the point but a great doctor. I heard nothing but good things about him during my hospital stay. I'm glad you're feeling better about your doctor and pray all goes well with your surgery too!  If you have any questions, I'll try my best to answer.  
Oh, and about pre-surgery diet, I think each doctor has his/her preferences. I was on clear liquid diet the entire day before surgery and had to drink magnesium citrate at noon but could continue clear liquids til midnight.

Lynn, what a wonderful news

Lynn, what a wonderful news your surgery went so well! I'm wishing you a speedy recovery! Please keep posting updates to let us know how things are going.

In terms of the diet, I suppose you are correct, it's all up to doctor's preferences. 

Lynn_65

MilaQ said:

I'm sorry guys I've been away

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 .

 

Just had my surgery

Just had my surgery, robotic partial nephrectomy removing approximately 20% of my left kidney, on Thursday, February 20.  I had been told some of the same things you mentioned, the placement of my mass was close to the renal vein and artery and they were afraid I may lose the whole kidney or that my surgery would have to be open. Once surgery started there was only one small vein to be reckoned with! I feel so blessed. I have 5 small incisions, the largest about 1 1/2 inches. I could have been released the next day but chose to stay another day and am glad I did. I woke up feeling better and ready to go home. We even stopped for lunch at a local restaurant on the way home.  My only pain medicine post op has been Tylenol every 6 hours. My doctor is brief and to the point but a great doctor. I heard nothing but good things about him during my hospital stay. I'm glad you're feeling better about your doctor and pray all goes well with your surgery too!  If you have any questions, I'll try my best to answer.  
Oh, and about pre-surgery diet, I think each doctor has his/her preferences. I was on clear liquid diet the entire day before surgery and had to drink magnesium citrate at noon but could continue clear liquids til midnight.