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What questions should I ask / what do I need to know?

Dsmith23's picture
Dsmith23
Posts: 8
Joined: Oct 2017

Hi! I’m new here. Im 29 years old and went to the ER with extreme abdominal pain which ended up being diverticulitis but a lesion was found on my right kidney during a CT scan. Anyways, I was referred to a urologist who got me in immediately and ordered another CT scan with and without contrast. He gave me his cell phone number and told me to call him just  soon as the scan was over. I did and he took a few minutes to look over the scan and called me back to let me know that it wasn‘t just a simple cyst and that I would have to have The lower pole Of my right kidney removed, as well as my gallbladder because they found a large stone in it. He also said that I had blood in my urine so he wanted to look in my bladder during surgery to make sure everything was okay there.

my surgery is scheduled for 11/22. I didn’t ask hardly any questions at all because I was so freaked out and just shocked. 

What questions should I ask? Is there anything I should know? How long does it usually take for pathology reports to come back? I was visablly upset so he told me to call his cell phone with any questions that I have. 

Wehavenotimeatall
Posts: 489
Joined: Aug 2017

You are much too young to be going through this but it sounds like you have one amazing doctor on your side

What size did he say the  mass was. You should also find out exactly where in the kidney it is

 

Have you seen the scans of your kidney as that will help to understand how easy or complicated the surgery will be

Your surgery is imminent so you will have time to prepare yourself

The important thing is to get that over  In most cases the surgery will cure the problem and you will be good to go but need to be aware of follow ups etc

 i didn’t have have blood in  urine  so others will chip in but it sounds like Surgeon is just covering all bases by checking the bladder so dont assume anything

 

Are they doing the gallbladder on the same day.

Annie

 

 

 

 

Dsmith23's picture
Dsmith23
Posts: 8
Joined: Oct 2017

Thabk you for responding. He said that it was 2.5 cm and that it was located on the lower pole of my right kidney. i have not seen the scans myself. Yes, they are doing the gallbladder the same day. They were going to do the surgery this Thursday but another surgeon is having to remove my gallbladder and they couldnt line up both of their schedules for that day. I’m beyond ready for it to be over. 

Wehavenotimeatall
Posts: 489
Joined: Aug 2017

wow you were on the fast track.  the blooming gallbladder wrecking your plans

 

Now you have a slight wait

 

2.5 cm is easily removed  and will have unlikely have caused any damage or spread to the rest of the kidney or anywhere else

slighly rough surgery but manegable.

 

so  you can find out

Are they doing laproscopy

With or without Da vinci

 

Have you had. Chest Ct to check you are clear If not ask

Due to your age other wise folk on here will urge you to find out about genetic testing   

I am sending you prayers and strength but it sounds like you will have little problem  and you will be back and fixed in a few weeks

 

Afterwards we can talk about your pathology and your folow ups but for now try to stay calm and it will be over before you know it

 

easier said than done but honestly you have a very high chance of success

 

Annie

 

 

Dsmith23's picture
Dsmith23
Posts: 8
Joined: Oct 2017

Thank you Annie! I have not has a chest CT but I will ask about that.

That is comfoting to read. I am nervous about the surgery and pain that will come along with it. I have three littles ones so the quicker my recovery, the better! It's all very scary because I have a family history of cancer and I know that it can come back later down the road. 

What has everyone's experiences been with the pathology results wait time? Is that something that takes days or are we talking weeks?

 

Angie1496's picture
Angie1496
Posts: 154
Joined: Sep 2017

Sounds like your plate is full but you have an amazing medical team. the ct you had should have gotten the lung bases but I would ask for a full lung ct. I had my path results within a week of removal. I also asked my doctor for a picture of my tumor. I needed to see it. Weird I know. Good luck!

AnnissaP's picture
AnnissaP
Posts: 632
Joined: Sep 2017

Sorry to hear this. I asked what size it was and if taking out part of the kidney was good enough. Length of hospital stay. Does the tumor look contained within the kidney. I would also ask what happens next. How long before you know exactly what it is and any/all follow-ups needed. Glad they are taking care of you quickly!!! I wish you all the best. People on this forum will help you out!

Dsmith23's picture
Dsmith23
Posts: 8
Joined: Oct 2017

Thanks for your response. I’ve already learned a few things just from reading through some of the posts. 

stub1969's picture
stub1969
Posts: 864
Joined: Jul 2016

I was so shocked and out of it, the only question I remember asking was whether it had spread or not.  Soon after I was diagnosed I found this site.  The members here helped ground me and plan for my next appointment.  I encourage you to use the responses that you get here and contact your surgeon again, or his office and ask questions.  Of course the big one is the question I asked.  Good luck!

Blessings,

Stub

Dsmith23's picture
Dsmith23
Posts: 8
Joined: Oct 2017

Thank you. I am making a list of questions as we speak. This time I will have them on paper so I won't go blank if any of his responses catch me by surprise.

kiwi68's picture
kiwi68
Posts: 110
Joined: Oct 2017

Some questions you might be able to answer with the receptionist or your normal doctor.   Others might be good to get his take on it

What complications does he envisage there might be.  Do you have any choices, laproscopic, open, robotic, hand assisted surgery, what is he expert at.  

How long will you be in hospital. What support will you need at home. 

What post operative instructions and who should you see for medical support during your recovery, stiches, unmanageable pain, when to call him or the other surgeon. When to go to the emergency department.   You might want to make appointments for your general practicioner or nurse practicioner for stitch removal and organise how you will be getting there and back etc. 

What prepareations will you need to do pre admission - blood tests/urine tests (where, how many days before, any fasting). 

How will the wounds be closed.  Staples, stiches, glues, types of dressings, drains, and what kind of choice do you have.  Pro's and cons.   Does he use or prescibe silicon patches for scarring or silicon gel. (Lots of surgeons are not too worried about scarring, but if you are discuss it with them, you look relatively young and having painful scars which need revision or hamper an active lifestyle could be a problem). 

What medicines should you discontinue/start before the operation. 

Will you need exercises afterwards, a spirometer or other breathing exercises. 

How and who will manage your pain meds.   (Sometmes they hand you a script as you are leaving hospital sometimes before hand and someone else can get it filled for you). You might like to find out if you need to take a stool softener before the general anesthetic and opiates or what your options are if you do get constipated.  Not a good thing when you have just had surgery.  All too commonly people get woeful advice and suffer complicaitons  that are not necessasry. 

When will he call you with the pathology reports for the operation or meet with you to discuss. 

When will he be visiting you in the hospital?  When will the other surgeon do rounds or see you.  You might want to make sure a significant other is there for those discussions/rounds. 

Does he have any leave plans, if so who will be his locum? 

Dsmith23's picture
Dsmith23
Posts: 8
Joined: Oct 2017

Thank you for taking the time to respond, Kiwi! These are great questions. I’m ready to get them answered and get this surgery over with! 

Jan4you's picture
Jan4you
Posts: 1326
Joined: Oct 2013

Glad you are so proactive and gaining information and support here. We'll be here for you, hon, all the way!

Robatic (DiVinci) laparascopic is easier recovery as you get these tiny incisions for the instruments/camera to fit, rather than an "open" incision which is larger. Either way you'll recover and this will be past you. 

Have you ever had an abdominal surgery? They use this gas to pump the abdomen up high so the surgeon can see around all the organs. You are having a partial sounds like vs a radical which is total removal of kidney. This GAS gets trapped in weird places, like your shoulder. THAT can hurt. I just moved my arm in circles to move it along. Most get scared by this and take pain pills which often cannot reach this gas. This gas can take several days to move out, so be prepared, but not scared. It doens't mean anything is wrong; its simply trapped.

Plan to have meals prepared or offers from family/friends for a several days/weeks. Also, laundry, housework too should be done by others. YOUR job is to recover, walk and let your insides heal up. Even if you start to feel much better, you cannot even exericse or lift for 30 days. Do you have a little one to pick up?

Usually you are in and out of hospital in 1-3 days. Many leave in 24 hours. You recover at home. You'll be off work (if you work outside the house) for a few weeks. Your doctor will see you about a week after surgery to check on incisions and your recovery. DO NOT RUSH this recovery even if you start to feel better. Gen Anesthesia, sometimes anemia make you sluggish and you are inside are trying to recover!

General anethesia slows or stops your intestines during surgery, so they will be listening for "bowel sounds" via abdomen to make they kick in so to speak. You may be constipated for awhile between Gen Anes and pain pills. AND you'll be tired!!

While in the hospital, you will have to breath into this plastic tube to make sure your lungs are working fully and to prevent pneumonia. They will have you sit up at side of bed, stand and maybe walk hours after you get back from recovery.Then you will walk and walk to prevent blood clots.

You will also have these inflatable wraps around your calves to prevent clots. It goes off automatically and you'll hear the pump. I liked it, felt good, others are bothered. Your catheter is usually removed in recovery and I doubt you'll have a draining tube so ASK if you will.I never did and I have had 4 abdominal surgeries! They want you UP and moving. 

I started to feel better around 5 days, because I used ICE to reduce the swelling/edema around the incisions. I also used a lumbar WRAP around my abdomen (approved by surgeon) so I could support those healing muscles. It helped me get UP from chair and bed. Some folks like to rest in recliner as its easier for some to get up. 

I realize I told you alot! I am here for you if you have further questions, you can look up at the upper left and see the email section and write to any of us personally/privately. 

Trust me, soon this all will be behind you. You are having 2 surgeries so again ask about the drain (gallbladder). 

So sorry you have to go through this so young.. but accept that you are in good hands and will be well cared for!

Sending you CALM, SERENITY with wishes for the best recovery!

Hugs, Jan

 

Steve.Adam's picture
Steve.Adam
Posts: 460
Joined: Oct 2016

Hi D,

I didn't ask many questions. Most of them were answered here, actually, so I didn't trouble the doctors with general questions.

As for the specific issues, they seemed to know what they were doing.  It's good to know what the surgeons are thinking and planning but I just accepted everything the medical staff said and did.

I think my pathology results took 4 or 5 days to come back. The tests were not done in the hospital so the kidney had to be sent out to a lab. There was a note on the report that the lab did not keep the sample, so I guess mine was not special. (clear cell RCC T1b grade 2. I was so relieved that I cried).

Your age should work for you, but be prepared to feel wiped out for longer than you expect. I am single and have no family but I think you will need help at home.

One more thing... The pain from surgery was no big deal for me. Maybe it was well managed by the hospital staff, but it was no big deal. Don't be too anxious about it. Some people get an easy ride and you might be one of them. I never felt like I needed ice anywhere. My big problem was bloating and constipation. If I was going again I would try a very light diet for a couple of days before surgery. I have no idea if that would help.

Steve.

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