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New here; surgery on Tuesday

wifeintexas
Posts: 9
Joined: Nov 2016

Hello.

My husband (57yo) will be undergoing a radical nephrectomy of his right kidney this Tuesday.  This is all happening quite rapidly, and I would love any advice that you all could provide to help us prepare for the surgery.  After about 3 or 4 months of constant weight loss, lack of energy, sleeping all of the time, night sweats, and a cough, he finally agreed to go to the doctor.  Prior to this, he has always been very active and fit, running, lifting weights and in great physical shape. No smoking or drinking and no illness.  So much so, that he doesn't even have a doctor.

I finally convinced him to go to the doctor about 3 weeks ago.  They did blood work, said he was extremely anemic and he was referred to an Oncologist. We weren't really sure why.  The oncologist ordered a colonoscopy, endoscopy, and CT scan.  He was told on Tuesday that he has a 7+cm mass on his right kidney, and it appears that it could be invading the perinephric fat.  On Wednesday, we met with a urologic oncologist and he explained that the best course of action would be to do a radical neprhectomy laparoscopically.  He is scheduled for surgery on Tuesday, 12/6. They said the pathology report should be back within 2 days of the surgery so we will have a better idea if we are dealing with a T1b or T3 stage of RCC.  Seems like quite a huge difference in treatment protocol between the two.

This is all happening so quickly and we are quite frankly still in shock.  I have spent the last 4 nights since we found out researching everything I could find.  I would love to know what are some "must bring" items for the hospital.  He has never had any type of surgery before (his colonoscopy 2 weeks ago was the first time he's ever had anesthesia!), so I want to make sure he is as comfortable as possible.  Please share any tips or tricks to recovering and being as comfortable as possible.  

Thank you so much for any information.  I am so sorry to meet all of you under such circumstances but am grateful for any advice you can give. God bless!

 

icemantoo's picture
icemantoo
Posts: 3280
Joined: Jan 2010

wifeintexxas,

 

Welcome to the club which no one in their right mind would volunteer to join. Being told you have kidney cancer and the first thing they wasnt to do  is yank out your kidney is something we all went thru. Mine was 14 years ago at a then 59 years young. Unfortunately this is major surgery. The first week was hell and than I was back to a slow normal in about 6 weeks. As far as formal wear after the surgery I would go with a loose pair of sweats. He is going to need pampering that first  week he gets home. We have all been there and done that. The surgery does beat  the alternative. May he have an uneventful surgery and recovery.

 

Icemantoo

wifeintexas
Posts: 9
Joined: Nov 2016

Thank you, Icemantoo.  Comforting to see that 14 years later you are still involved in advocating and helping others who are yanked into this netherworld. I am committed to pampering him and being by his side every step of the way! And will be stocking up on loose sweat pants this weekend!

Thank you for the welcome and advice.

JoanneNH
Posts: 115
Joined: Sep 2013

My tumor was 7.5 cm, so just a bit bigger than your husband's.  I also had a laparoscopic radical nephrectomy of my right kidney.

I had an epidural and self-administering pump placed at the recommendation of my surgeon so I wasn't in too much pain with that in.  When they took it out and it wore off, however, let me say I was taking all the pain medication I was allowed at the earliest time I was allowed.  I didn't want the pain to get ahead of me and all the medical staff agreed.   I was off the dilaudid within a few days of being at home.

Bring him a small pillow (like an accent pillow) to hug while in the hospital if they don't give him one.  It helps to hold it against the surgical area when you cough, sneeze, or otherwise stress the area. I actually held it against my surgical area when I walked.  Don't make him laugh. He should be up walking as soon as he can and do it as much as he can.  He will not be able to bend over for a while.

He should wear loose pants, like athletic sweat pants in at least one size too big.  I would put a folded washcloth in the waistband as a cushion for the wound.   Make sure he has some kind of cushion for the seatbelt on the way home.

It will be very uncomfortable lying down to sleep.  If you have a recliner, he should try to sleep in that.  In my case, I spent about a week and a half on the couch, propped up with pillows.  Again, walking is going to help considerably.  

This was my first surgery ever and I was terrified.  The medical staff was fantastic.  I did everything they told me to, like use the spirometer often to prevent fluid buildup.  I gained 20 pounds in fluid, but it was gone within a few days.

Oh, forgot about the constipation.  I don't think I went for a week, but when I got home, I started taking a small amount of Metamucil several times a day.  I never had cramps with it and it worked perfectly.  Others use different products, but I like Metamucil and it worked well for me.

 

wifeintexas
Posts: 9
Joined: Nov 2016

Thank you, JoanneNH for the great info. I have done hours of research but no "articles" can provide the real life knowledge of someone who has been there/done that.  Sweat pants (one size too big! - would not have thought of that!), small pillow, cushion for seat belt, recliner, and Metamucil will be on hand

I appreciate your tips and advice.  I want to make an awful situation as good as possible for him!

sblairc's picture
sblairc
Posts: 586
Joined: Feb 2014

Lots of recent threads on your topic have been discussed in very great detail. Recliner for sleeping, earplugs for you, stool softner as suggested by the doctor, LIMIT THE DRIVING for a while, button up shirt for leaving the hospital. 

My husband is 3 years cancer free from T3 cancer!! Yours will be fine too. 

wifeintexas
Posts: 9
Joined: Nov 2016

Really good info.  Thank you so much for the great tips! 

foroughsh's picture
foroughsh
Posts: 779
Joined: Oct 2014

Wellcome

Plus everything others said please remember that Breathing exercise is a must.

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

First let me say what a wonderful woman you are and how lucky your husband is for having YOU at his side. We'll be here for you both if you want us to be.

Its good he is having the robatic/laproscopic type surgery as in my opinion, it is less invasive and a bit easier recovery. I have had 2 lap surgeries of my 3 abdominal ones.

For me, I used the lumbar velcro wrap both times and it helped hold in and support those tender abdominal areas. Got it at the local drug store. Its used for support of the lower back.

I also used ICE for swelling over the incisions in hospital. NO ONE could get me ice, as I remember the RN telling me, "but you have your choice of pain meds." So the PT therapist took a rubber glove and filled it with ice from the water machine. ha!

I wore that lumbar wrap at home, in bed as it helped me get UP more comfortably. I tucked dry ice packs inside it but over my underwear so its not directly on skin. HELPED a lot!

Hope they are treating your husband for his anemia. It can be really debilitating, tiring. But very treatable. Not uncommon to have more anemia after surgery. I had to beg my surgeon to test me for it as I am prone to anemia. He didn't think I needed it but did and sure enough I had anemia. Tookd OTC Slow FE (less constipating)

He won't be in hospital long 1-2 days usually. He'll be tired for awhile. They will get him up to walk or at least stand first day. Walking is good but NO EXERCISE at all for at least 30 days is what I was told. No exceptions. Your insides are healing and you do not want to get any hernias.

After 1st week I started to feel okay. DIdnt need much in pain meds as I used the ice for swelling over the biggest incision (where they take the kidney out). They actually bag the kidney before removing it so cancer cells are not dragged out with kidney.

BUT my biggest pain is the gas they pump into the abdomen so high in order for the surgeon to SEE beyond our organs. It gets trapped, especially by the shoulder. It was my worst pain but I knew it was only gas. I would walk and swing my arm to try and get it untrapped and out of my body. Took a few days to get it out. So tell him not to be alarmed by that pain.

We're here for YOU and for him, so ask away.

YOU are in my thoughts and prayers. Many here are stage IV and still getting treatments=surviving.

Hugs to you and your hubby,

Jan

wifeintexas
Posts: 9
Joined: Nov 2016

Thank you, Jan.  I really appreciate your encouraging words and learning about your experience!  I appreciate all of your thoughts, prayers, advice and hugs.  You guys are all so welcoming here and what amazing positive attitudes you have!  It is so uplifting!

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

Oh and laproscopic incisions are about an inch in diameter, with the largest about 4 inches, I'd say. Radical means the whole kidney is removed vs. partial which is part of the kidney. OPEN means one large incision vs laproscopic, several smaller ones where the robatic arms maneuver the surgery. Most surgeons are using this method now.

Jan

nancybuck's picture
nancybuck
Posts: 117
Joined: Sep 2015

Praying for your husband and you during your unexpected journey. The wonderful follks here are always here to assist in answering your questions.  Will be thinking of you and your husband this week.

 

Nancy from Austin, TX

wifeintexas
Posts: 9
Joined: Nov 2016

Thank you, Nancy!  Wonderful folks indeed.  

Jojo61's picture
Jojo61
Posts: 1310
Joined: Oct 2013

Welcome to the club nobody wants to join....it is one heck of an initiation! I had my 13 cm tumor removed this month, 3 years ago. It was stage 3 and I have been free and clear since! Yes it is a tough surgery, but your husband is in otherwise good physical health. Since he really hasn't had surgery before, just be prepared that he might vomit after the surgery. I did, even though I warned them that I tend to do that. Not fun, but it didn't harm any of the surgeon's handy work!

Your hubby will probably be surprised at how good he feels a few days after. Each day gets better and better. You already received great advice, but I suggest that you have him walking every hour. It really does speed the feeling of wellbeing along. Have some of his favourite movies on hand, some good reading material, some healthy but light meals/snacks, and a comfy recliner to rest in. I slept in my bed upstairs the first night home....it wasn't bad, but I am guessing a recliner would be a better option.

Good luck to you! I will be sending good thoughts your way on Tuesday!

Hugs

Jojo

 

wifeintexas
Posts: 9
Joined: Nov 2016

He has such a positive attitude so I think that will really help!  We have a brand new bed that has a base that raises the head and/or feet, so I'm hoping that will help keep him comfortable!

Deanie0916
Posts: 322
Joined: Nov 2016

It is s scary when things have to move so fast...all of the advice given here is really great, walking as soon as you can is really helpful. The metamucil has helped me a lot, too. God bless you with quick and full recovery!

 

hardo718's picture
hardo718
Posts: 853
Joined: Jan 2016

Sorry we have to meet like this.  I think the above members have pretty much covered everything I would have but I'll stress again, make sure he does his breathing exercises with the device they'll give him at the hospital.  That's going to help prevent pneumonia, last thing he needs.  The combination of anesthesia, pain meds post-surgery and the pain causes us to breathe a bit more shallow, which can lead to pneumonia.  His target goal should be at least 1000cc and once he's able to achieve that consistently, increase the goal by 500cc increments.

Best wishes, keep us posted and I'll be praying for you both,

Donna~

sblairc's picture
sblairc
Posts: 586
Joined: Feb 2014

I can't stress the importantce of the breathing exercises. Especially this time of the year. 

JerzyGrrl's picture
JerzyGrrl
Posts: 760
Joined: Jun 2016

Thinking of you both today. Sorry you had to join the club, but glad you found us. 

My surgery is scheduled for next Tuesday. You both can be giving me pointers. 

Hugs,

Jerzy

todd121's picture
todd121
Posts: 1427
Joined: Dec 2012

Hi. I hope the surgery goes well/has gone well. I had a similar size tumor and also had a radical nephrectomy on the right via robotic assisted laparascopy. My largest incision was 6" (they wanted to take it out whole and intact because my tumor was in the center of the kidney), and then had I 4-6 smaller, 1" incisions from just below my ribs all the way down to my hip. Mine ended up being Stage 3b because mine had grown into some of the small veins in the kidney. I was also Fuhrman Grade 3, which was aggressive (but not 5 which is the most aggressive).

There probably won't be much treatment difference between T1-T3. Once it's removed, there's no standard treatment. However, followups will be closer for T3 because the risk of recurrence is higher. After you get the pathology, post the results please. There's different types of RCC and all the pathology results will guide you in how closely to do followups (frequency and how).

If it were me, I'd do the same followups for T1 to T3 for the first 2-3 years anyway. T3 I'd follow closely for 5 years. (These are my opinions. There is a national guideline for followup. If you look to them, keep in mind those are the minimums. I wouldn't be comfortable with the minimums.)

Please let us know how it's going. Tell him to do his walking, drink lots of water, do the breathing exercises to avoid pneumonia. Follow the doctor's advice on lifting and driving. He's going to be tired for quite a few weeks. I was glad I took 6 weeks off work. After I went back, I got really tired every day by 4-5pm and I was like that for a few months. In fact, I don't think my body returned to normal for a year. Keep in mind the outsides heal up faster than the insides and his body will need adjusting to one kidney.

I recommend a followup soon with an RCC oncologist. You can get plugged in to any studies that are going on and, if it were me, I'd prefer the RCC oncologist (who is an internist and ill manage his care after, heaven forbid, if it ever comes back). RCC medical oncologists know best how to follow up for mets because that's what they treat. The surgeon is probably going to want to follow him. It might be fine, but I think I got better care by having an medical oncologist with RCC experience follow me.

Depending on his kidney function after the surgery, you migh want to follow up with a nephrologist. I ended up with some reduced kidney function so I see one every 3 months and she follows me closely. She advises me on drugs that are bad for the kidney when other doctors suggest them, and also on drugs that are good for protecting kidney function and protecting against blood pressure problems, etc. She monitors my kidney function closely.

Hope this all helps.

Best wishes,

Todd

mrou50
Posts: 389
Joined: Mar 2013

I hope everything went well with the surgery and that your husband is doing well.

Mark

wifeintexas
Posts: 9
Joined: Nov 2016

Hi everyone.  I'd first like to thank everyone for the great advice, positivity and compassion.  This entire experience has been surreal, but you all have been extremely informative and welcoming!  

So my husband was scheduled to have the right neprectomy laparoscopically on 12/6/2016.  The morning of the surgery, the surgeon called and said after further review of his CT scan with colleagues, he determined that doing an open would be better because of some concern of the location of the tumor and not getting clean margins.   So, my husband decided to proceed with the open radical nephrectomy with just a few hours to adjust to the change of plan.  The surgery lasted about 4 hours and the doctor came out and said everything went well, he didn't see any disease on the liver or nearby areas. He felt confident that he got clean margins and that we made the right decision to do the surgery open.  He also said the lymph nodes he interacted with did not appear swollen or inflamed which was a good sign, but we would wait for pathology reports on Friday.  

My husband was in the hospital 6 days.  He did well overall with his recovery and pain management, although he did try to not use pain medicine as often as he should have/could have.  He had a PCA for the first 4 days and he hardly used it after day 3. He did great with walking and the spirometer, but had difficulty urinating once the catheter came out. That continued to improve each day.  He was NPO for about 36 hours, then was clear liquids for 48 hours, then full liquid until we were released home.

We received the pathology report on Friday and it was a mixture of good and concerning news.  The tumor was 7 cm, Clear Cell Renal Carcinoma, no lymph nodes were in the sample, so that is unknown.  No evidence of metastisis.  Furhman grade 4.  LVI - Lymphovascular invasion.  Obviously the Fuhrman Grade 4 and LVI are extremely concerning.  

Clear Cell  T: 1b   N: X    M:0   Furhman: 4   LVI

We are looking at various options for pro-active treatment, but right now are just focused on him healing from the 10 inch incision on his abdomen.  

We see the surgeon for follow up on Thursday of this week and then see the original Oncologist that diagnosed him on 12/28.  We have a very good family friend who is a Radiologist at a high profile hospital, so she is contacting colleagues to get us linked up with an oncologist who specializes in Renal Cell Carcinoma.  One of them has already suggested a targeted therapy under the name of Sutent (Sunitinib)

From a recovery standpoint, he is doing great!  Getting around well and trying to get his appetite back.  

Just wanted to update you all and thank you again for your great advice and encouragement.  I'm not sure where we go from here, but I do know that we will arm ourselves with information and be pro-active in his treatment!

Merry Christmas everyone!

dhs1963's picture
dhs1963
Posts: 511
Joined: May 2012

Your husband needs to get to an oncologist who specializes in RCC.  Several years ago, at least, there was a view that adjuvant theropy (that is meds when there is no evidence of disease post nephrectomy) could actually do more harm than good.  RCC is somewhat different than other cancers.

I take it from your name, your are from texas.  I know of two amazing programs:  One at MD Anderson (Dr. Tannir) in Houston, and one at UTSW in Dallas.  For the later, they have Dr. Hans Hammers -- he used to be my oncologist until he left Johns Hopkins in Baltimore.  

I was grade IV stage IV (sarcomitoid differentiation, solo met to the lung).  But, I was treated only with surgery.  That was four years ago.  (diagnosis of Stage IV was 4 yrs to the day). I can personally recommend Dr. Hammers.  (I wish he was still local to me).

icemantoo's picture
icemantoo
Posts: 3280
Joined: Jan 2010

Hopefully he will not need further treatment and a neph. is enough.

 

Icemantoo

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

Thanks for giving this update. Sorry it could not be laproscopic incisions but he is past this surgery now and on his way to recovery!

Remember, I used a lumbar, velcro wrap (for bad backs) and wrapped it around my abdomen from 2 of my past surgeries.It really helps support those healing tissues and getting UP from a chair/bed. I also put dry ice over my underwear near the incision which gave me more relief than pain meds.

Keep us informed. Sounds like they really tried to get it all!

Hugs, Jan

wifeintexas
Posts: 9
Joined: Nov 2016

Thanks Jan!  The velcro wrap has helped him tremendously.  I told him about the dry ice but he didn't want to try it.  I made a list of all the great tips everyone shared.  I asked for the velcro wrap on day 3 in the hospital and they gave him one.  He was scared to use it at first but now uses it all the time!

He is really recovering and healing nicely so far. I think his positive attitude and excellent fitness level pre-surgery is definitely making the recovery a little easier.  

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