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Pre-Op tomorrow

orchidgal's picture
orchidgal
Posts: 6
Joined: Jan 2018

Newbie here. Diagnosed incidentally first week of November 2017 (3.5cm in size and hilar location). First urologist said laproscopic radical was the way to go. Went for 2nd opinion. They did chest x-ray (clear) and biopsy (papillary renal cell carcinoma, type 1) and suggested partial open. Going with partial open. Meeting surgeon for pre-op tomorrow. Have been reading online to kill time. Emotions up and down but know that this thing has to go to save my life and the prognosis is good for my type and stage. Tough luck being diagnosed right before Thanksgiving because all tests,  visits get pushed back by winter holidays. Would love to hear the questions that you asked that were most useful at your pre-op or the ones you wish you had asked.

Jan4you's picture
Jan4you
Posts: 1327
Joined: Oct 2013

Welcome, Orchid gal! Glad you found us. I can appreciate all the emotions you are going through. Hearing the possibility of cancer is always unsettling. I came here for information so that when I met with my surgeon, I was really prepared. I just wanted it over. Usually kidney cancer (RCC) is slow growing and accidently found. 

I have had 4 abdominal surgeries in my life, 2 open, 2 laparascopic and found I healed better with Robatic/laparascopic. But that was my preference. You just want this out of you. 

Since your tumor is estimated as only 3cm or so, it most likely is stage I and your prognosis is good. They will monitor you, about 5 years,, but usually Kidney tumors are contained inside kidney so prognosis is really good!

Have you ever had any abdominal surgeries? You are usually out in a day or two to rest up at home. No exercise for 30 days I as told but encouraged to WALK starting in the hospital. 

I also used a lumbar, velcro wrap, used to support bad backs to support my sore abdomen. It really helped. I also uesd ice packs (not ice cubes) inside the wrap over my underewear and felt it reduced swelling quickly, lessoning my need for opiates. 

BUT what they don't tell you, is that they pump UP your abdomen with this gas so the surgeon can see around other organs. It gets trapped in weird places like around shoulder inside. It HURTS, but its only gas. It doesn't mean anything is wrong. I would swing my arm around to help move it around and out! LOL

We're here for help you through this time. Most likely you will be just fine and on to your recovery. 

Let us know what you need. My first visit with surgeon was showing me how the cancerous tumor looked different than the cyst. 

Sending you CALM, SERENITY and HOPE for a healthy future. 

Hugs, Jan

Retcenturion's picture
Retcenturion
Posts: 240
Joined: Mar 2017

Sorry your joining the club but welcoome. My main concerns initally was how many times had he done the procedure, and would he be my primary contact after the surgery? I felt much better after the pre op interview. There are alot of people here that have had the surgery recently. If you think of a question or concern this is the right place for an inform answer. Good luck on the meeting.

APny's picture
APny
Posts: 1998
Joined: Mar 2014

So sorry you have to be here but glad you found us. Mine was also 3.5 cm and I had an open partial. It went really smoothly and was not nearly as bad as I had feared. I agree to ask how experienced the surgeon is in open partials. Partials are more complicated so you want someone very experienced in doing them. It's good you got a second opinion because if they can save most of the kidney that's always a good thing. I had to sign off on the possibility of it converting to a radical during surgery so you probably will have to also. I prepped for surgery by walking for 30 minutes twice a day on the treadmill. I was also given a breathing apparatus prior to surgery and told to use it to build up lungs. You should ask for one. All the best to you and we're here for you.

Bryn1108's picture
Bryn1108
Posts: 94
Joined: Jul 2017

Great advice from Jan4you,  she is so right, the gas they pump into you will make you hurt chest, shoulder and neck area. She is right, move as much as possible.  I was extremely nausea,  my husband fixed me fresh ginger tea, as she said ice packs help a lot.  My urologist said no ibuprofen for 3 months. I only have one kidney now, so I care for it like a newborn baby.  Big hugs and prayers for you.  Praying you have fast healing.  

orchidgal's picture
orchidgal
Posts: 6
Joined: Jan 2018

Thanks for responses. I have had open thoracic surgery for thymectomy 4 years ago after diagnosis of myasthenia gravis. They found lymphoma in the excized thymus, surprise!, but by the time I found out I had lymphoma (in the pathology report) it was already gone, for good I hope. So the renal tumor will not be my first OR rodeo. My husband and I both had that "Hmmm, this is not the person for us." reaction to the first urologist about the kidney situation so I asked my lymphoma oncologist (who monitors follow up for lymphoma and is great) to set me up with someone he trusts for a second opinion and surgery if required. All on my team are notables at a major Boston hospital. Also wanted to synch up with my neurologist (for myasthenia) who is also at same hospital. Special handling is required for anaesthesia if you have myasthenia. Long story short, I have an experienced surgeon and he said his goal is to lose the tumor and preserve function in the affected (left) kidney if possible.

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

Hi. Glad to hear you're optimistic. I too had the feeling that the 1st urologist was "off" and not the one. Happy you got a 2nd opinion. I wish you all the best!!!

todd121's picture
todd121
Posts: 1449
Joined: Dec 2012

My only comment is to be careful comparing diagnosis and treatment against most of us here, because most of us are clear cell. I'm pretty sure papillary is a different animal and probably has different prognosis and treatment. I don't know what the difference is.

Why do they need to do it open and not laparascopically?

Keep in mind until you get the pathology report back, you don't really know the stage or type fully. They can't tell 100% from imaging or biopsies. When they do the pathology you will have a thorough analysis of type and stage and grade also (not sure if grade applies for papillary).

I wouldn't be comfortable with a chest X ray alone for ruling out lung mets. By they time the met is large enough to show up on an xray machine, it's quite large. Most of us when getting additional screening to make sure it hasn't spread get a CT of chest/abdomen and pelvis. Sometimes they also do a nuclear bone scan and an MRI of the brain (to rule out bone mets and brain mets). Those are all common places (at least clear cell) spreads. I was Stage 3 and did a drug study, and that's what the drug study wanted to do to make sure I was really Stage 3 and not Stage 4 (which is what I think we all want to know). However, if you do end up being Stage 1, I would think a CT of chest/abdomen/pelvis is adequate unless they see something on the bones. In any case, most oncologists do this after the surgery after healing so they have a baseline scan to compare future scans against. The best help they get with multiple scans is comparing the most recent with the past if they have a nodule or something in the lung and want to know if it's grown, shrank or stayed the same to try and figure out if it's something to worry about.

Hope this isn't TMI. :)

Todd

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