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New here/surgery Coming up March 28th

ricksgirl
Posts: 9
Joined: Oct 2012

Hi! I've been lurking on this board as I waited for more information about my own situation (if I don't join, it can't be real!!). Found incidental complex cyst back in August, followed up in Feb and it had grown. MRI showed enchancement, etc. Went to Urologist who then sent me to different hospital (in Boston) for Urologist/Oncologist yesterday who is pretty sure it's RCC (clear cell he says, but woud he know just from images?? or just experience/likelihood?). Partial nephrectomy now scheduled for March 28th. Guess I'm not going on that trip with my mom in April! I am 43, mom of 4 kids, VERY active.

So I have questions (in no particular order). What should I be doing to prepare for this? (aside from the bowel prep which sounds just horrible?!). Anything I could have set up at home to make things easier? They made it sound like I would feel very bas for the first 2 weeks, then tired/sore for another 2, then maybe another 2 of not quite myself. Exercize at 6 weeks? Used to daily workouts so tough to picture being this laid up. I work from home but I'm guessing I'll be foggy for those first weeks?? Anyway, would love support/info. I realize this is maybe  tricky for some people, but when can I have sex afterwards? When did you feel "back to normal"? Trying to figure out how much care I will need (including loneliness) vs. how much time husband can really take off work.  Telling kids (9, 12, 14, 16) today, and dreading it. Thanks in advance for your help. 

APny's picture
APny
Posts: 1949
Joined: Mar 2014

love to have you with us but sorry you have to be here. I had a partial nephrectomy exactly two years ago yesterday. I was fortunate not to have to do bowel prep but have done those for colonoscopies. Not pleasant but no big deal. I had my surgery Monday morning, up and walking that evening, home Wednesday and at my computer doing work on Thursday. The day after surgery was toughest but they gave me painkillers so manageable. Otherwise it was honestly not nearly as bad as I had feared.

I walked for five minutes every hour and drank tons of water. Bought a recliner to sleep in but didn't need it. Able to walk upstairs and slept in my own bed. What I did that helped is I got a wedge pillow and piled more on top. Also got a long body pillow to support the side with the incision. I came home with a drain for a week so it supported that as well. Slept fine on my back like that. Getting in and out of bed is hardest but they'll teach you to roll in the hospital. 

For the way home get a large garbage bag for seat of car  that way you don't have to twist, just glide. It's the bag that slides and not you.  Also bring a pillow to cushion the seatbelt from rubbing. 

I went back to the treadmill after about a month, not positive. Ditto for sex. 3-4 weeks I think.  Hope your recovery is as uneventful as mine. A lot depends on tumor size, location, incision size, etc. Mine was 3.5 cm and the incision around four inches. No staples. So all that helped 

I'm wishing you the best And sorry this is so long winded!

 

foroughsh's picture
foroughsh
Posts: 775
Joined: Oct 2014

Wellcome to the board no one wants to join

I had open radical neph to remove 10cm tumor along with kidney and adrenal gland. My surgery was done on Monday afternoon, walk at around tuesday noon and wS home on wendsday morning. The insicion is less than 4 inch which is wonderfull. The surgery isn't walk in the park but we all have survived so will you. Every body is different at healling so don't put any pressure on yourself, take enough nap, eat healthy food, dink loads of water, walk and walk and walk, have someone foe at least one week to take care of you just in case of emergency, prepare foods before the surgery, have a pillow near by, and let your body heals, remmember that ourside heals sooner than the inside. There are many nerves, veins and organs ehich should learn how to behave differently anter the surgery so it takes time so about comming back to gym I think it's best to talk to your surgeon. I perssonally didn't come back for almost three months and the reason was more emotional as it was a big shock for me to hear "C" world. It took me long time to back on track, at least 8 months. I'm almost normal but this is a new normal which is far different from what it was before diagnosis day. Sex, I think 10 days after the surgery. My husband and I had one week trip abroad 22 days after surgery and I was fine with walking, exploring, swimming,shopping, ... However I had diziness,fever, nausea for ine evening and I had to take rest foe an evening,I think it had nothing to do with surgery.

I came back to work after six weeks and just the first two days was a little uncomfortable sitting on a chair for 8 hours.

My toughest fight wasn't physical, it was emotional, it took me long months to finally get over it.

Thinking of you and sending you good vibes

Forough

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

Welcome Ricksgirl....sorry about how you got here. You are journeying through the worst part of this....the waiting, the wondering the worrying. The surgery is no picnic, but generally it isn't that bad - now I had a total nephrectomy, so I can't speak to a partial. With 4 kids you will be itching to jump right back into things. But please take it easy. Your body will need to heal and you don't want to induce complications (hernia, for one) and delaying your healing. I suggest making meals ahead of time and freezing them to ensure that you don't need to worry about that. I was doing laundry within 5 or 6 days...but that was a no-no. I was kind of euphoric after the surgery - just so relieved that it was behind me and that it went well.

Good luck - will be sending good thoughts your way on the 28th!

Hugs

Jojo

icemantoo's picture
icemantoo
Posts: 3227
Joined: Jan 2010

Ricksgirl,

 

Welcome to the club which no one in their right mind would volunteer to join. As for your  questions. The infamous liquid plumber. Read and follow the instructions. Is it Cancer? Probably based upon the doctor's interpretation of the imaging, but in about 10% of the cases, what looks like Cancer is not. How long should husband stay off work?  A week or more if he can. How is the recovery? Everyone is different. Take it easy those first few weeks. Sex? That will probably not be on your mind initially, but what does a 72 year old guy know. One of our club members recalls my old saying. There is no way to sugar coat  a neph. I guess you will not be running in the Boston Marathon this year.

 

Icemantoo

 

 

ricksgirl
Posts: 9
Joined: Oct 2012

Thanks EVERYONE for all of practical advice - body pillow, garbage bag, gallons of water walking, resting (this will be the tough one for me). What pain meds will I take?? I vomit from most narcotics...is there something I should be asking for? I told my oldest and he took the news in stride (I did present it in a practical way). Telling youngers this afternoon. My parents want to help out, but not sure what to ask for?? Feeling burdened, but hopeful. Appreciate the kind words and support.

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

Everyone is different, of course, so I'll just speak for myself and try to give you some helpful hints.  I, unlike lots of others, was able to sleep on my left side the day after my surgery for a left partial nephrectomy via robotics.  That's how I normally sleep and it actually felt fine.  I was hospitalized for 2 days and the drains were pulled before I left.  Never had much pain honestly.  I was uncomfortable and a bit sore, but nothing major.  I was VERY weak, that bothered me more than anything because I am usually very active.  I would strongly suggest have some meals prepped in advance for the family.  It was recommended by my dr. that my husband be home with me for the first week.  That helped a lot.....had someone to lean on when we went for frequent walks and he was great at making sure I was drinking enough water and doing my breathing exercises.  Do yourself a favor and buy a lumbar support wrap.  Another person that posts here will advise dry ice too with that wrap.  I didn't know about that trick so I used the wrap alone and it helped immensely.  Makes it easier to get up into a standing position and keep everything feeling like "it's staying together".  For me, the first week was the worst of the ordeal and little by little the strength returned as well as normal activities.  You'll need lots of rest, water and short walks.  I went back to work after 3 weeks (in a hospital setting, so I was on my feet a lot).  Wish I'd waited another week in retrospect.  Sexual activity?....honestly don't recall, but listen to your body, it'll let you know when you're ready.  

Good luck with your kids. 

I'll keep you in my prayers,

Donna~

rja3d's picture
rja3d
Posts: 35
Joined: Mar 2016

I'm new myself.   being active and in good shape will certainly help.  get plenty of rest and let the family wait on you - they'll enjoy it.  My tip:  get an abdominal splint (Amazon)  really helped me to be more comfortable moving around 1st couple of weeks after open partial neph.  keep in touch!

 

 

Jay 

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

Hi Ricksgirl,

Just a quick answer to your "medication" question. I have trouble as well. While in the hospital they ended up putting me on dilaudid. I hope you find something that works for you!

Jan4you's picture
Jan4you
Posts: 1322
Joined: Oct 2013

Hello and welcome~ glad you found this site. You'll find out how supportive and informative it can be.

If you have trouble with Opioids there are other meds that help AND ICE over your incisions really helps reduce the swelling. As a result I didnt need pain meds after 5 days, just ice and tylenol. BUT others may need it longer.

What they don't tell you is that dang GAS that is used to pump up your abdominal wall so the surgeon can SEE. It gets trapped in places like your shoulder and it really stings. I would just swing my arm about 360 degrees and try to walk it off.

I also used a velcro, lumbar WRAP used for bad backs. it really held in those sore muscles until they healed on the inside. Used it in bed/chair so I could get UP easier, then when walking.You are not allowed any exercise for 30 days. Or whatever your surgeon says, follow.

Also some of that nausea comes from the gen anesthesia still in your system (takes days) plus now you are getting oral pain meds. I asked for ICE while inpatient and the RN looked puzzled as I had pain meds ordered. Finally the PT therapist got me some ice inside a latex glove!! LOL It worked!

Keep asking questions. You'll get through this. Hope you have help at home, do you?

Hugs, Jan

todd121's picture
todd121
Posts: 1425
Joined: Dec 2012

Hi Ricksgirl and welcome!

I also am very sensitive to narcotics and vomit easily. Still, both of my surgeries, even though I told them not to give me morphine, they did. I woke up vomiting. I think the first surgery, to be clear, they gave me morphine. I talked to the anesthesiologist about that and he tried something different on the second one, but it also made me sick. Have a talk to your anesthesiologist about this.

After my nephrectomy, they had me take tramadol. It didn't make me sick. However, my second surgery they didn't want me to take it. They said it's hard on the kidneys.

In my opinion there is no way for the doc to tell even that it's RCC from the imaging, much less that it is clear cell or what. They can tell that it's 90% likely to be cancer, but beyond that they need the pathology. They also can't really accurately stage it until they have the pathology report. The pathologist will decide what it is, what stage it is and what grade it is. Before that, they are completely guesses.

I had a radical nephrectomy on the right side, but it was done laprascopically. Still, I ended up with a 6" horizontal scar on my right side (they wanted to take the entire kidney out intact), and another 4-4 smaller 1" ones sort of all over the place on my right side. I don't think I had to do a bowel prep. I think they just asked me not to eat.

My surgery was a Monday morning. I woke up vomiting Monday night. It's a tough surgery. Tuesday morning they made me walk to the door and back to my bed. It was tough. Tramadol for pain. It worked ok for me. By Tuesday night I was walking down the hall and back. Wednesday around noon I got to go home even though I had no bowel movement yet. I was a little worried about that. I started eating Tuesday. Liquids in the morning, and solids later that day.

I took care of myself. My bedroom at my house is upstairs. Before I went into surgery, I put a small fridge and a microwave in my bathroom and had my bathroom stocked with everything I'd need. I didn't want to have to go up and down the stairs. This worked out pretty well. Within a few days I was walking out in the neighborhood. The stairs really weren't much of a problem, but I'm glad I didn't have to do them often.

About 2 weeks after my surgery I was driving, but it hurt. In fact, sitting was the worst position for me for about 2 months. Laying or standing was best. I spent most of my time watching tv and walking around my bedroom or laying down or walking outside. Drink a lot of water.

I was off pain meds within just 2-3 days after I got home. Except occasionally I'd take tylenol if I was hurting bad enough in bed. Turning over in bed hurts like hell those first few weeks and getting up and down out of bed hurts.

I went back to work after 6 weeks. I'm glad I took off 6 weeks. I didn't think I was ready to go back, but I was. I got very tired by the end of the day for several more weeks, even a few months. I do a lot of sitting at work, and this was the most painful position because it put pressure on this 6" incision.

Advice. Walk soon and as much as you can. Drink lots and lots of water. Eat light, healthy, small meals. Get some fiber but gentle types. Don't lift anything heavy for a couple of months. It was 5 days before I had a bowel movement, and I think I'm very typical. It's a bit scary eating for 5 days and not having a bowel movement. The doc told me that as long as I'm not nauseous not to worry about it. I took Senna+, a mild, natural laxative which I think also has a stool softener.

If you take narcotics, they can be constipating. Keep this in mind.

About 2 1/2 weeks out, I did take a trip to Vegas. I drove most of the way there and all of the way back. This was about 4 1/2 hours each way. However, it was a bit painful and I got tired easily. I don't recommend it, but I'm just giving you an idea of what was possible.

Hope something in here helps. It takes your body a long time to adjust to a radical nephrectomy. I hope you're getting a partial. If you are getting a radical, monitor your blood pressure closely for the months following surgery. See a nephrologist and get your remaining kidney checked out soon. I advise you to see a medical oncologist soon after your surgery, preferably one who specializes in RCC if possible (if that's what you have). They are much more familiar with how this cancer spreads and they might want to order other tests to make sure you are cancer free and also to get a baseline for further imaging later. Your urologist/urologic oncologist will want to follow you. However, if other disease is found, you're most likely going to be referred to a medical oncologist because they are the ones that manage/treat metastatic disease. Personally, I wanted to get their advice early and have them follow me since I felt more comfortable with having a doc that know about metastatic disease following me instead of a doc that was going to pass me off to someone else if something new came up.

Sorry for the length of this. I really hope something useful came to you from this and I wish you well. You can do this. You're going to be fine. Don't get caught worrying too much about the future.

Best wishes,

Todd

 

ricksgirl
Posts: 9
Joined: Oct 2012

You guys are great! I'm making a list of items: pillows/garbage bags for ride home, loose clothing, lumbar wrap, etc. Feel free to keep suggestions coming. Husband is taking 1st week off. My friend is organizing meal drop-offs (and visits as they work...). This news has made me lose my appetite, but I'm trying not to go into the surgery all frail and tired (good luck, me!). Can't seem to sleep well right now. I have a 165-pound dog so am figuring out help for walking him (doc says 1 month since he might pull?). Anyway, wishing you all good things on this first day of spring (though in Boston we are expecting snow)...

icemantoo's picture
icemantoo
Posts: 3227
Joined: Jan 2010

Ricksgirl,

 

Pain medications make you constipated. Ask for some stool softeners. No one in their right mind wants to be cobstipated a week after a neph when that big day happens,

 

Icemantoo

Footstomper's picture
Footstomper
Posts: 1238
Joined: Dec 2014

Waiting is the worst part. If you look on this board you will see that everyone's experience is different except in one respect: Its never as bad as your imagination can make it. Relax, you go to hospital and go to sleep. Afterwards you will feel a little sore and a lttle weak. I should think its comparable to having a Caesarian. May your treatment be boring and unremarkable.

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

Just wanted to stop in and say HI to you and to wish that your future surgery and treatments are unremarkable. You have come to the right place for any information you may need during your personal journey. I do not have much experience here, but all of my friends on this forum provide so information and caring thoughts, they are the best of the best.

I wish you well friend.

angec's picture
angec
Posts: 923
Joined: Mar 2012

You will do just fine! Since it is a parital, it must be small and you got it early. That is great! Big relief there. You say a cyst, how big is it? Get a copy of all of your reports and make a file. He can't know for sure what it is until it comes out. Can just be a cyst, not cancer. I have seen that happen before.  Have you had any of the commom symptoms, night sweats, pain, fever, high blood pressure? Just curious as it was described as complex cyst, not a mass. But you should heal quickly and be fine. A mom with four children, a home based job and a strong will, you might not get any rest! ;) But, take it easy at least for a week or two.  Sex? Ya see, you are already thinking ahead.  Try to cook some meals and freeze them before hand if you are able to do that. It will help on those days if/when you are tired. Get all the laundry, ironing done for the week as well. This way it won't be on your mind too much.  

My mom had a radical at 79 1/2 years old, four years ago.  She was in intensive care for 3 days and went home two days later. So, five days after surgery she was up cooking Sunday dinner like it was nothing.  She had robotic surgery.  Let us know how it goes. Don't worry, you will be fine and I am betting you will say it wasn't as bad as you thought it would be. THe waiting is the worst part! Hugs to you and the family.. keep us posted!

 

ricksgirl
Posts: 9
Joined: Oct 2012

Again, I appreciate the responses! I bought an abdominal support thing, and a body pillow. Kids are having a little bit of a tough time knowing I'm going to be away/recouping, but I've got some friends covering meals and grandparents coming to town. CANNOT SLEEP. Which makes me feel loony. I suppose up and down is normal??! Thanks again for being here. (and in case you wonder about the name...Rick is my dad. First joined when he was diagnosed with Mantle Cell Lymphoma back in 2012 - still taking him for chemo...though not sure I'll be back in action for his appt on 14th...).

lcsvb's picture
lcsvb
Posts: 40
Joined: Jan 2016

So sorry you have to join us here, but welcome! I had a robotic partial 9 weeks ago and am an online teacher from home. I took exactly one week off and then opened up my laptop, but from the recliner. The desk was a bit too uncomfortable for a few weeks. Plan on needing naps, eyes get strained quickly, and you will want help from the hubby that first week. I did not take any pain meds after the first week and it was more uncomfortable than painful. Get that belly wrap for sure as it is so supportive for the multitude of walks you will be taking. I have to admit that the first 3 weeks are not a lot of fun, but working from home is definitely doable! Good luck!

medic1971's picture
medic1971
Posts: 190
Joined: Sep 2015

Well I hate to welcome you here, but glad you found us...

I am 44 years old and I have a 6 year old daughter.  I had a robotic partial nephrectomy this past October at MD Anderson.  I am going to echo what everyone else is saying, waiting is the worst part...

Surgery was easy, recovery on the other hand, was a bit harder than I thought, BUT it wasn't horrible by any stretch of the imagination.  Those first few days weren't a lot of fun.  They will have you up and walking not long after surgery.  Walking was the easy part getting up and down out of bed was the tricky part.  Using a firm pillow to help brace yourself will help getting up and laying down.  I was on Rx pain meds around the clock for the first few days and then I only took them at night for the next couple of weeks.  Let the doctor know that pain meds make you nauseated so they can write you for something to help with that.  Medications like Zofran and Phenergan will help prevent nausea and eating something beforehand will help too.

The bowel prep was no fun; in fact I was still feeling the effects of that a couple days AFTER surgery.  They had me drink two bottles of Mag Citrate the evening before surgery and well let's just say I had a squeaky clean GI track when it was all said and done. Surprised 

I took off work 6 weeks, however I've been at my job for 20 years and I had 15 weeks of sick leave. It's hard to use sick leave at my job so I took it.  I could have gone back to work in about 3 weeks if I had to.  I'll admit I was kind of in a fog for about 3 weeks or so, but then one day out of the blue I left like myself again.  The soreness in my abdominal muscles was there for about 4 months.  The soreness reminded me of what it feels like after doing a lot of crunches the day before.  

Have something to do at home.  I watched old episodes of Big Bang Theory, WRKP, and played X-Box.  I'll warn you, laughing hurts. Yell

The lifting restrictions are a real pain in the arse.  I had to sometimes stop and remind myself not to be picking things up.  

My wife only took the first week off from work and after that I was good to go on my own.  

Sex part is kind of trickery, those sore abdominal muscles can quickly kill the mood.  It may take serval weeks before you are ready for that.

During your recovery the most important thing is to listen to your body, your body will let you know if you are overdoing it or now.

Good luck to you and if you have any questions please feel free to post them or you can message me too.  

Please keep us posted.

Jason

todd121's picture
todd121
Posts: 1425
Joined: Dec 2012

I'm one of those (perhaps rare?) people that narcotics make me very nauseous no matter what they give me. I've gotten so frustrated by this topic, I can't begin to tell you! Every time I've been in the hospital I go round and round with the doctors and nurses wanting me to take narcotics. They assure me we'll try this narcotic or that narcotic or we'll give you this anti-nausea drug or that anti-nausea drug. None of it has worked and I've tried them all!

I've woken up from 4 abdominal surgeries vomiting because they insisted on giving me some kind of narcotic while I was out, despite telling them beforehand that I'm very sensitive to narcotics and them giving me a wrist band saying "narcotic sensitivity".

What is up with that at the hospitals? :) Why are they so insistent that pain is such an awful thing? I'd take pain over nausea any day of the week. When I've had really serious pain (for example, with kidney stones), not only did I have nausea from the pain meds, but the pain meds didn't relieve my pain. So I got pain and nausea. 

Sorry for the rant. :) But when I saw your old too familiar "zofran or phenergan will solve that problem", it brought back such bad, bad memories. Please don't take it personally. I'm glad it works for some, though.

Best wishes,

Todd

Jan4you's picture
Jan4you
Posts: 1322
Joined: Oct 2013

OH, I wanted to ADD that I used dry ice packs inside my lumbar wrap to reduce swelling=reduced pain.

And are you have robatic, laproscopic incisions? For me, I have had two, plus now a total of 4 abdominal surgeries, and found I recouped more quickly with lap incisions. So you may start to feel better sooner than you think AND yet your insides are still healing. Walking is good, but nothing else, and NO, not walking your dog, esp as big as he is. You don't want anything rupturing inside.

Again, we're here for you!! You'll be okay, you will.

Hugs, Jan

medic1971's picture
medic1971
Posts: 190
Joined: Sep 2015

Hello Todd,

What is up with that at the hospitals?- Because we don't always listen to what are patients are telling us. 

For the vast majority of patients those antiemetics work well, but there are those out there, like yourself and my mother, who are extremely sensitive to narcotic pain meds.  There was really nothing that could get my mom nauses under control after she had brain surgery, but she was hurting also...  So it's a balancing act between effective pain control and not causing N/V in a patient who is sensitive to those types of meds.  I asked my mom to be sure and get the name of the antiemetic, that finally worked so, if she ever had to have surgery again, we could start out with that medication, not end with it.  

 When I was fulltime at the bedside I saw about three or four kidney stones a week and bet you were absolutely miserable.  Do you tolerate Toradol?  OFIRMEV works well too, so if you ever have to have surgery again it's something you might talked to your doctor about.  OFIRMEV is just an injectable form of Acetaminophen, but it works quite well without the nausea.  

Jason

todd121's picture
todd121
Posts: 1425
Joined: Dec 2012

Hi Jason,

I think the injectable acetaminophen was what I had at my last surgery after I got sick on dalatat (not sure how to spell that one). Dalatat was the one the anesthesiologist wanted to try on me. My reaction was not as bad as morphine, but still not good. Since toradol is an NSAID, they probably won't give it to me. My kidney function isn't so great. My first surgery the docs thought tramadol was ok, but my second surgery was at a  national cancer center and they didn't want to give me tramadol either because of my reduced kidney function.

Hope I don't have to find the combination that works. :) Here's to having no more surgeries! And hope your mom doesn't need another one either.

Todd

ricksgirl
Posts: 9
Joined: Oct 2012

to all of you! I really feel quite isolated even though I have a grat family and friends. Just finding comfort in this group and with my dog (he is 165 pounds so I wont be walking him for a while! Doc says 6 weeks in case he pulls...). I guess I'm just in that waiting space. I realize we can't know progression possibilities until staging/grading is done, but I am pretty scared about that. This whole thing was a case of "it's nothing" "it's nothing" "it's probably nothing" "oh, it might be something" "It's renal cell." So I don't put much stock into the surgeon (great rep but still...) saying "it probably won't come back...but we'll folow you for 5-10 years in case it does, either in the kidney or lung, etc."). I know he's just trying to prep me for the various outcomes, but I write novels for a living and can't turn my brain off to stop thinking... So thanks again. 

todd121's picture
todd121
Posts: 1425
Joined: Dec 2012

If you're going to write yourself a story, write a good one with a happy outcome. :)

It is hard. For a long time I had this feeling of doom and really thought I'd be dead in a couple of years. I kept seeing myself dying a long, slow, painful death. That was 3 years ago. I'm much more aware of the fact that I do not know the future. Not at all. All I have is today. Live. Enjoy it. Treat yourself and others with kindness. (That's another thing. I'm so much more patient with others now. I'm very aware I don't know what other people are living with, now that I've experienced this thing.)

Who would've thought this might be a gift? Is that going too far? Lol.

Todd

 

Skagway Jack's picture
Skagway Jack
Posts: 221
Joined: Oct 2013

ricksgirl,

Regards pain as many have mentioned it is highly individual.  In my case I had a radical nephrectomy of my right Kidney.  I found sleeping in the lounger very helpful.  When getting up holding a pillow against the incision helps.  I had morphine drip in the hospital.  This caused me severe constipation and when I checked out of the hospital they gave me Oxycontin.  I think I used one or two doses and then went to using tylenol as I was nervous about the oxy and frankly I didnt think the pain was that bad.   I did get up and start walking as soon as I could (about four hours after the procedure).  i walked everyday around the neighborhood and I took 6 weeks to recover and go back to full time work.  Just me but the fear is worse than the actual I thought.

With respect to the pathology of the tumour you should get some answers within about three days of the surgery.  I started back to swimming at six weeks but Ill be honest I didnt much like doing sit ups for about a year, but my scar was 9 inchs accros my entire right front side, as a partial yours should be significantly smaller.  Good luck and just dont push it. 

Sorry you had to join our club but lots of good folks on here.

 

Jack

ricksgirl
Posts: 9
Joined: Oct 2012

24 hours from now the surgery will be in process. Kids are starting to buckkle a little (having claimed to be "fine" before) which is difficult. Lucky my parents are around, though this is hard for them, too. In terms of follow-up...

-How often are you seen?

-Chest films?

-MRI/Ultrasound??

-Anything you look for (pain, fatigue, fever)?

-Did you stay with your surgeon or find other oncology care?

 

Thanks - talk to you all on the other side!!

APny's picture
APny
Posts: 1949
Joined: Mar 2014

The anticipation is so bad. I can definitely empathize. Follow up protocol varies depending on path report. I was fortunately stage 1 so I get ultrasound every six months and chest x-ray. I get frequent blood work as I tend towards anemia and iron deficiency. I stayed with my surgeon as he's also an oncologist and experienced wtih RCC. When I was discharged I was told to look for fever. Quite frankly, pain is a given and so is fatigue so nothing to get alarmed about. My pain was not severe at all. I hugged a pillow while walking, coughing, or laughing. Ask them to give you a breathing apparatus (spirometer, I think it's called) and use it often to prevent fluid from building up in your lungs. Walk as soon as possible. Wishing you the very best and soon it will be all over and you'll be rid of the little &^%$.

Jan4you's picture
Jan4you
Posts: 1322
Joined: Oct 2013

Its natural for this "reality" to stare one and our loved ones in the face!

I was fine, just wanted to make sure i had those small, laproscopic incisions.

Had them before and healed up, speeding up my recovery time.

Your path report will tell the surgeon/urologist the protocol to follow 3 months vs 6 months and what tests etc.I learned that the blood tests used as part of this protocol tell the doctor if cancer cells evident.

You usually do not need to see an oncologist unless it is a higher grade of tumor.

Many of us become more aware of any ache and pain, or change, so these wonderful docs know how to answer any questions.

ICE it, using one of those hot/cold wraps you can buy in drug store and place it over your incisions. Helps reduce the swelling. But i also worse a lumbar wrap to support those healing tissues and even wore it to bed first week.

I'll especially be thinking of you tomorrow. You and your family are in my thoughts and prayers.

Hugs, Jan

JoanneNH
Posts: 115
Joined: Sep 2013

My experience:  My doctor gave me dilaudid in both an epidural and oral instead of morphine.  It worked well for me.  I was off of it within a week at home.  Walked a lot in the hospital.  I ended up staying 4 days because of my sodium level.  Gained 20 pounds in fluid from the surgery.  Once home, I started talking a little bit of Metamucil twice a day to help with constipation.  It worked well, gently.   Colace give me wicked cramps.  I slept on the couch for about 1 1/2 weeks, propped up with pillows because my recliner is not comfortable, and it hurt to get up from a lying down position.  Bending over was painful for a while so my relatives would come over and clean the kitty litter box for me.  Also I had a bit of trouble holding onto my pills, dropping a few on the floor.  I ended up opening the bottle over a bowl just in case I dropped them.  

You might bring a small pillow with you to the hospital to hold against your abdomen in case you cough or sneeze and for walking, and tell people not to make you laugh.   I used the pillow or a folded towel between me and the seatbelt in the car.  Sometimes the hospital will have a special pillow to give you.  I used to work for the heart surgeons at the hospital where I had my surgery.   They gave me one of their heart-shaped pillows so I don't know if the hospital would have given me a different one had I not been given the heart one.

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

I will send good healing thoughts your way tomorrow! Take deep breaths. It will be all good before you know it!!

Hugs

Jojo

icemantoo's picture
icemantoo
Posts: 3227
Joined: Jan 2010

Ricksgirl,

May you have a routine and uneventful surgery. I would say painless, but I would be laughed off this board.

 

Icemantoo

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

and your family too.  It's tough for the kids and other loved ones.  Everyone feels helpless. 

I'll be praying for all of you and your surgeons, that their hands will be blessed with an accuracy and a quickness to get in, do what they need to, and get the heck out and let the recovery begin.

Make sure you drink plenty of water (helps keep the fevers at bay), do your breathing exercises, take plenty of short walks and rest, rest, rest.

Soon this will be in your past and you'll be here cheering others on with your own recovery experience.

Donna~

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