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23 Yr Old getting open radical nephrectomy - Any advice?

E.S's picture
E.S
Posts: 12
Joined: Sep 2011

Hello everyone,

This past summer I have discovered that I have an unclassified malignant tumour my right kidney. All of the specialists that I have seen seem to be baffled as to exactly what it is. The only thing they know is that it is malignant, but have no other information. Even the way the mass has formed is extremely rare according to the doctors.

I am scheduled to have my open radical nephrectomy in one week and I am becoming increasingly nervous. I already am a rare case ( because of my age and lifestyle) according to all my doctors, so now I am even more worried about complications from the surgery. Can anyone give me any sort of advice about recovery or what to expect for this type of surgery? Any help would be great :)

icemantoo's picture
icemantoo
Posts: 1774
Joined: Jan 2010

Dear E.S.

Most of us on this board including myself have had the Surgery. Not fun. No way to sugar coat it. It is major abdominal surgery. It has been around for many years and usually does not result in complications. At 23 you have an advantage as far as recovery. The first couple days are rough and within a month or two you should be back to normal. The concern most of us have is the cancer spreading or a recurrance down the road. Those concers have to do with the size and type of tumor which is not included in your post. Many of the other posts and discussions relate what myself and other members of the club ( which you are about to join ) have gone thru as a result of the surgery. Most important keep a positive attitude.

Best wishes,

Icemantoo

Jamie1.3cm's picture
Jamie1.3cm
Posts: 188
Joined: Jan 2011

Most radical nephrectomies are done laproscopically. If I were in your shoes, I would want a good medical reasons why your surgery has to be an open one. It may be because of the weirdness of the tumor, but it's worth asking the question.

E.S's picture
E.S
Posts: 12
Joined: Sep 2011

The surgeon said that he usually would perform the surgery laproscopically, but because he doesn't know exactly what he is dealing with he (and a few other doctors) think it would be best if the surgery is open. The tumour is about 3 cm, but there seems to be some other unknown growth surrounding it that takes up the upper half of my kidney.

I have been trying to research what the recovery is going to be like, but I find that many of the people that have a similar scenario have not had an open surgery, and I know this will change the recovery time and results.

icemantoo's picture
icemantoo
Posts: 1774
Joined: Jan 2010

Dear E.S.

Those having open surgery have a longer recovery and those much younger have a quicker recovery. Having said that and subject to your doctor's opinion you should have a recovery within the parameters of most of us on this board who like myself had the surgery done laproscopically. Instead of 2 days in the hospital you may have 4 or 5 though. As I said earlier get the surgery behind you.

Best wishes,

Icemantoo

Vagusto's picture
Vagusto
Posts: 86
Joined: Aug 2011

Hello
I also had an open radical, because the tumor size was large. I was 46 when I had surgery.
I did well in the hospital, I opted for (can't think of the medical term) medicine being put
into my spine. That was the best decision I made!!! I was scared of it hurting when they put the needle in my back, but they did it when I was out of it in the operating room. :) I had no pain, until they took it out and started me on regular pain meds, about 2 days. While I didn't have pain with the spine meds, I did have this horrible itchiness, drove me almost crazy!!! They gave me something to lessen the itching. The pain came on fast when they took the spine meds out.

When I got home, I of course was moving like a turtle. Getting out of bed was very hard, had to roll out of bed. My biggest piece of advice is don't over eat at one time. Instead eat small meals several times a day. I had some issues going to the bathroom, tried to eat fiber foods and took Senna for it...also drank a ton of water. I did have flank pain for a long time. It took me some time to get all my energy back.

Open is a hard recovery. My Doctor compared it to a C-Section. But, every day will get better, and you will be back to normal before long.

Take Care
Valerie

newenglandguy
Posts: 66
Joined: Jun 2011

With an open nephrectomy the surgeon has the advantage of seeing what he's dealing with.it sounds like several doctors share the same opinion. Lathroscopic is warranted when the tumor is clearly defined, does offer quicker recovery, but does not allow the surgeon to survey surrounding tissue. At your young age recovery should not be as bad as for someone who is 40 or more - as you'll notice the majoeit y of people sharing their experience are over 40. No one will dipute that young bodies heal quicker than older bodies.

Wish you the best of luck in your surgery!

niprut
Posts: 23
Joined: Jul 2011

Hi E.S,

There are many aspects of recovery: pain, appetite, energy levels, emotional aspects, constipation and other bodily functions :-) is there anything in particular that you were wondering about?

I am sure you will have youth on your side, but it is also major surgery and parts of the recovery wont be that nice. Hardest for me was trying to sleep on my back, when you dont sleep properly it makes everything else harder to deal with. I also suffered from very bad constipation. I didn't however suffer with the same pain that others have. It will be your personal journey, but please feel free to ask for any info you might need here and good luck.

Jo

Jamie1.3cm's picture
Jamie1.3cm
Posts: 188
Joined: Jan 2011

My surgery was open. In fact, I've had 4 open abdominal surgeries in the past 6 years. ugh. The recovery is brutal. I like Valerie's idea of an epidural. In England, they routinely give an epidural for post-surgical recovery the first day, but they don't typically do that here in the US.

Recovery? Set specific goals for yourself each day. The evening of surgery day, sit up on the side of the bed. Walk to the sink or chair in your room if you can. The next day, walk to the nurses' station. The next day, set a farther goal. It will hurt like the dickens. Ask for more pain meds, because the more you can move around, the faster you'll heal, though it sure doesn't feel like it at the time.

At home, expect to sleep A LOT. But also expect the bed to be uncomfortable and not being able to sleep through the night. Sleep in a recliner or on the couch. Try the bed, but just know that you'll probably have to move somewhere else after a couple of hours. Roll out of bed instead of using your abs.

I was driving myself around in just a few days, even though I should not have been. I'm a person who just can't sit still at home, unfortunately. As everyone mentioned, avoid big meals, though pain meds usually kill your appetite anyway. No lifting. Request pain meds for as long as you need them.

Expect good days and bad days. By the 6 weeks mark, you should start to feel like yourself again, even if you still have a few bad days here and there.

Ojosarco
Posts: 9
Joined: Aug 2011

HI
Jamie always seems to give good advice and I concur. I"ve also have had a lot of abdominal surgeries in the past and an open kidney surgery takes the cake. I didn't have big tumors but the docs really wanted to look around, take out lymph nodes so they went for open. I had an epidural and it certainly helps with pain. I think these days, in the hospital they can control the pain pretty well. yes, getting up and moving is the best. I would do rounds around the ward day and night as lying down was not that comfortable. I do think you have age on your side-----I'm 59. Be patient (which I'm not always). I had good advice the other day---think in months, instead of days and weeks for full recovery and there will be bumps in the road. But, again, being 23 I'll bet you are basically back at six weeks. Each surgery, where they go--how long you're on the table etc. varies so there's no predictions. Yes, the recovery is longer with an open but your surgeons must have good reasons they are going that way. Good luck and get this out of the way. One thing I had that I haven't heard mention is I really bloated after the surgery (maybe because they took out my lymph nodes) I gained 25 pounds in two days of water! It was very uncomfortable and noone warned me about that. Nonetheless by two weeks it was gone plus another 10 pounds. It is a little hard to keep your appetite up because of the pain meds. I went off daily pain meds at three weeks and take a hydrocodone at night now and sometimes an ambien----sleeping doesn't seem to be easy unless you're a back sleeper. You'll do great---be in as good a shape as you can going in and I think you're wise to find out as much as you can.
Best-
Kathy

E.S's picture
E.S
Posts: 12
Joined: Sep 2011

I appreciate the advice from everyone. It's nice to hear it coming from people who have experienced the same thing that i will be going through. I just went for my pre operation appointment and i got alot of questions answered. I think I will end up getting an epidural as it just seems like the least painful option (although it probably will still be quite painful!) I am just happy that i will be done with this soon. Again, I appreciate all of the advice and help.

Vagusto's picture
Vagusto
Posts: 86
Joined: Aug 2011

How did your surgery go?

E.S's picture
E.S
Posts: 12
Joined: Sep 2011

Vagusto, I appreciate you checking in. The surgery went well. It has been about 2 1/2 weeks since the surgery and im feeling much better each day. The Dr's still do not know what type of cancer the tumour is so I have to wait (yet again) as my surgeon sent my kidney to a genealogist to look at it (im assuming more at a molecular level). I just had my staples removed and I have a few minor concerns. I have the steri strips over the incision but there is some clear liquid getting trapped under the strips and I dont think the scab is healing very fast because of it. I dont know if I should check with my dr if this is normal or not. Also, I still seem to have a bit of pain (and a slight amount of numbness in certain areas) on the rest of my stomach that is very sensitive (even to the lightest touch). I was also wondering if this is normal. Overall though I am feeling good, I just think I am getting ahead of myself.

Vagusto's picture
Vagusto
Posts: 86
Joined: Aug 2011

E.S
Sounds like you're on the road to recovering! I also have some numbness, a fairly large area. I believe this is probably because of nerve damage. I really don't mind, if I ever need a shot in my tummy....I know right where it can go without hurting.:) I was also pretty sensitive to the touch, this should improve with time. It will take your incision some time to heal. I think as long as it's not red, you should be okay. (and make sure it doesn't smell...gross I know) It took me about a year to totally recover from the surgery. An open radical is much harder to recover from. But, you will get there. Don't over do it, or you will pay. Baby yourself....you deserve it!
Valerie

Mookies Mom
Posts: 13
Joined: Jan 2010

Translocation Xp11.2 RCC is a subtype of kidney cancer that is found in children in young adults. My husband was diagnosed with this subtype. The pathology was diagnosed by a specialist so it took a while to get the results back. But knowing the specific subtype really does help with deciding the proper treatment. Hopefully, your tumor will be testd for this specific subtype instead of just being lumped into a clear cell diagnosis. My husband was put on Sutent after his kidney was removed which kept the cancer stable for about a year. He did have side effects, but they were manageable and he was able to return to work. Best of luck to you.

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