CSN Login
Members Online: 17

Who has had an open surgery?

mom2two
Posts: 48
Joined: Aug 2013

I know everyone is different, but I am really, really dreading this surgery. I feel like running and hiding. My mass is small (1.5 cm), and I have two small spots on my right kidney that we are "watching."  I don't want cyro...and I have to have an open due to having so many surgeries in the past (lots of adhesions).

Honestly, I need the truth...how bad is it? I know I have no choice, and I need it out of me...

GSRon's picture
GSRon
Posts: 1224
Joined: Jan 2013

Bad..?  Heck, I slept right through it..!   OK, your case should be tons easier than mine was.. Yes there will be pain after..  The pain will lesson over time..  the Dr's will give you the magic juice to take the pain away...  Honestly, I am the absolute biggest chicken there is.. and I look back and say it was not that bad..  My biggest pain issue was when I was being moved the first few days after...   but I had a radical nephrecomy.. plus I had to be opened up a bunch to clear the Cancer out from my Renal Vein.  I would think your incision will be a lot less than mine.. and that you will have a lot less pain.. or at least I hope so..!  Hang in there..!  I know it is difficult..  

What I did for days before the surgery is fall asleep dreaming about me waking up and seeing the sun..!  That worked for me...

When the deed is done, come on back and tell us your story...

Ron

icemantoo's picture
icemantoo
Posts: 1529
Joined: Jan 2010

mom2be,

It is going to hurt a lot. Although mine was Laproscopic it was at 59 years of age which made it harder. Contray to my earlier comment where I suggested you ask your doctor first because you had possable bi-lateral kidney Cancer for which I did not think you woukd find answers here, do not ask your doctor if this is going to hurt. They do not feek a thing. Mine wrote on my discharge summary that I was discharged without pain. He was either drinking or trying out for standup comedy when he wrote that.

 

Icemantoo

 

mom2two
Posts: 48
Joined: Aug 2013

Sometimes I think I should wait...but wait for what? it to get bigger? give it a chance to spread? yea, I know it rarely spreads in tumors 4 x my size, but do I really want to take the risk? Ugh.

 

I think a couple of my hang ups are that 1) I will only be paid part of the time I am out, 2) husband keeps saying "if it was me, I would try some natural remedy," and 3) before I can go back to work, I have to be able to push a 700 lb cart. Yes, I am not kidding. :(

Miashelle1's picture
Miashelle1
Posts: 40
Joined: Aug 2013

Its not worth the risk! I am new to this and I hope you dont wait. As for the money side of it ... my husband was off two months with no pay and you get by .. we did ... money is nothing compared to your life. And you should give hubby a slap for that comment (sorry I am very independant) natural does not in my opinion cure cancer!

My surgery was 6 weeks ago and I promise you I was terrified beyond belief .. I am pathetic with pain and have had some really bad anxiety issues over this! I also promise you it was not as bad as I thought it would be. The recovery for me has been frustrating ... not soon enough etc. I push myself and wipe myself out. I paid for it this last week with some severe fatique and have slowed down a bit. I was sitting at my desk two weeks after surgery .. stupid but it made me feel better. I am now happy to be at home and rest and do things at a pace I am happy with. Today I drove my car for the first time alone...not due to pain but i was so wound up with anxiety that my driving was dangerous and today I relaxed and did it. I figure that if I am to have this problem I may as well get on with it rather than waste my life on negative thinking. The pain is controlled and the care is good so please try not to worry. Have the surgery and look forward to a long and happy life.

Michelle x

mom2two
Posts: 48
Joined: Aug 2013

Thanks everyone. My surgery isn't until October 3. I hope I don't make everyone sick of me by then. I am sure I will be posting again...looking for any ounce of encouragement. 

 

Thanks so much to all of you,
Kathy

Djinnie's picture
Djinnie
Posts: 769
Joined: Apr 2013

Hi Mom2two, 

Having had several surgeries I can understand you not relishing another. I have had six, and only just escaped a seventh by the skin of my teeth. I have had so many chunnels excavated I am surprised there are no signs of subsidence! I thought that my surgery in March would be open because of adhesions. They decided to try laparoscopic robotic surgery first and switch if necessary, fortunately they must have found an uncharted route.

Having a partial nephrectomy is a more complex procedure than a radical nephrectomy. No one is going to tell you it is not painful because it is. The surgeon has to cut through muscle and tissue to get to the kidney. You will not only have pain from the op but also the kidney screaming at you. The main thing is to keep on top of the pain, over here they give you strong paracetamol, I am not sure what you will have. Taking the tablets regularily will make it bearable. Sadly running is not an option, when it's time you will be able to deal with it, there's no choice!

I was advised by my surgeon to drink plenty of water every day up to as well as after surgery. It helps with the procedure if your tissue is hydrated. After the surgery I drank prune juice to help things along a bit.  You will have to rest and allow yourself sufficient time to heal. No bending, stretching or lifting for at least five to six weeks or you could cause a bleed in the kidney, which would not be good. Your kidney is going to be delicate for some time! so you will have to be mindful of that!

You will get through this, the aftermath of the op my be painful but it is balanced with a huge sense of relief that the tumour has gone! Then you can look forward to the rest of your life:)

If you are worried and want to voice your fears on here go ahead, it doesn't matter how many times you post. This is not an easy thing to deal with, we all know that!  If you have any questions or want advice there will always be someone to help.

Stay Strong:)

 

Djinnie x

Miashelle1's picture
Miashelle1
Posts: 40
Joined: Aug 2013

I stand by what I say with the very greatest of respect to any other poster.

On a personal note Mom just be kind to yourself. When you are in hospital the nurses will help you and care for you. I broke my heart the morning I was admitted for my operation. The fact that my two grown up children and husband were with me could not help me get a grip on myself I simply just felt broken. But, the care and support I recieved from my team was so caring it just made it all so much better. I woke up in High Dependancy a couple of times and the memory I have is of a nurse plaiting my hair and singing to me and I will never forget that. You will settle I promise you. Michelle x

LynninNC
Posts: 12
Joined: Jul 2013

The recovery from surgery is kind of like delivering a baby. It hurts but the memory of it fades.  I was in ICU for 2 nights until they could get the epidural out and then one more night in the hospital. Getting up out of bed and moving as soon as possible helps. When they tell you that your bowels may take a while to recover believe them...that was the worst for me! Drink as much water as you can and take the stool softeners etc.    My incision healed well and I was slowly walking hills within a week....much to my family's dismay. Moving helps.     You will get past this.          After the initial phase of recovery....you know, the incision healing and staples out etc it will still take time for your body to feel "normal". Months even. I am almost a year post-surgery and my incision still itches and my hip is numb/tingly. My focus and attention came back slowly too. It was probably 6 months before I was back up to speed in that aspect of work.     Listen to your body. Rest when it tells you to. Drink a lot of water. Excercise.         Really, you will be fine and offering others support before you know it.          You can do this. And no, you do not have a choice.        Good vibes your way! When is the surgery?    L~

Texas_wedge's picture
Texas_wedge
Posts: 2807
Joined: Nov 2011

The answer to your first question is:  probably most of us here have had one or more open surgeries.

As regards work, you haven't said what it involves, other than pushing a 700 lb cart.  It will take a long time to heal enough for a constantly physically taxing job, so you would be missing a lot of work if you have an op and return to your present job.  

However, you've given no good evidence for ignoring the professional advice, which is, in your situation, to watch and wait and NOT  to have surgery at present.   The advice you've received here has mostly been from comparative newcomers who, with all due deference, don't, as yet, know much about this business.  They've reinforced your belief that  "I know I have no choice, and I need it out of me..."  which is simply untrue.  There's a flood of wholly ill-advised operations going on prematurely which both puts a great strain on the availability of time for truly necessary ops and which also causes unnecessary pain and loss of work for patients and their caregivers and friends.  

You'll lose nothing by waiting and watching the lesion closely.  Your urologist isn't absolutely certain that it's cancerous and if it is and an op is necessary later on, it will be just the same as an op now.  It's virtually unknown for such a tiny lesion to metastasise so there's no serious risk in continuing surveillance until something indicates that intervention is necessary.  

Meanwhile, it's possible for the lesion to simply disappear or to shrink or remain unchanged.   We can't really know the numbers but it's undoubtedly the case that we all get lesions like yours which, without symptoms, there's no reason to detect and so we live with them indefinitely, or our immune system successfully gets rid of them without our ever knowing about it.  There's nothing wrong with your Husband's suggestion in your present situation - it's not as if he's saying that you shouldn't have an op that's known to be essential and instead should depend on alternative medicine.  Tuning your lifestyle towards the ideal (e.g. in exercise, diet, relaxation etc) and even trying some complementary therapy that's not known to be harmful isn't foolish in itself.

It's annoyingly unscientific when folks talking about, e.g. diet or 'natural' remedies feel obliged to say that they are sure that they cannot cure cancer (just to look as though they're being hard scientists).  Since there are cases of 'spontaneous remissions' that go unexplained, it's not scientific to say that they can't be a result of x or y, unless thorough investigations have been carried out that give good evidence that x or y could not be responsible.  In most instances no such investigations have been carried out, nor are they likely to be. 

So, you've asked why should you wait and, aside from the reasons I've given you, there's the fact that the gurus in RCC treatment say you should.  Wait for it to get bigger?, you say.  That's a specious question - wait to see if it's going to get bigger and if it gets bigger at a snail's pace, possibly keep waiting (assuming you don't have symptoms).  Wait for it to 'spread'?   You say, is it worth the risk?   The risk is virtually zero, which is why the medical experts say you should wait.

I hope you'll see the sense of not rushing into an operation that may even be completely unnecessary but which there's no real disadvantage in having later anyway.

NanoSecond's picture
NanoSecond
Posts: 527
Joined: Oct 2012

Hey Tex,

In light of your exceptionally inspiring and (dare I say) heroic assessment of your recent setback it is a bit disconcerting for me to take exception to something you have written here.  Still, to be perfectly honest, I just don't understand your saying this:

"It's annoyingly unscientific when folks talking about, e.g. diet or 'natural' remedies feel obliged to say that they are sure that they cannot cure cancer (just to look as though they're being hard scientists)."

I am someone who talks alot about following a proper diet while spending a heck of a lot of time researching just what that might entail. Yet I also state quite clearly that I do not believe that just dietary changes (or taking supplements) - ALONE - can "cure" cancer.  This is being scientific in the true sense of the term.  To date there is no acceptable scientific "proof" - as in the case of controlled double-blind experiements, etc. - that might allow any "responsible" scientist to make any such claim.  Meanwhile, you and I both know that the term "spontaneous remission" is just a broad catch-all phrase that simply connotes mainstream medicines inability to explain what they feel is unexplainable (at least so far).

Now I personally believe that I have had great "success" based on changing my diet.  But my success, rightfully, should only be classified as being in the realm of "purely anecdotal" (along with all spontaneous remissions).  This is following the well understood "rules" of the scientific method, which I unabasedly try to adhere to.  In doing so I am not trying to prove that I am a hard scientist.  I am simply acknowledging the limits of that science.  They are not the same thing at all.

Remember, it only takes the observation of one black swan to "prove" that a "scientific" statement that "all swans are white" is  completely false.

mom2two
Posts: 48
Joined: Aug 2013

Thank you for such a detailed post, but I never said my doctor said to "watch and wait" the 1.5 cm mass. We have been doing that for a year, and it grew 6 mm this past year. I had an MRI and it filled with gad, which is usually 85% accurate in determining RCC based upon some studies/research.

What my doctor said was that we need to "watch and wait" on the masses on the other (right) kidney. I will have scans every 6 months until it is stable for one year then it will go to once yearly.

The doctor said that it was our choice to "watch and wait," but when I asked him what he would do if it was his wife? He said he would probably tell her to get it out. He said of the !5% of tumors that are benigh, 2% are some form of a benign tumor (can't remember the name) that grows rapidly.....and we already know that is not the case in my situation (only grew 6 mm in one year). So that leaves me an 87% chance that it is RCC.

I have had left flank pain, which you can say is not related, but I have no other reason (found) for it. I have had some RBC in my urine with no signs of infection.

I am a nurse. I bend, lift, twist, and push an emergency cart (on call) that weighs over 700 lbs that I have to manuever in and out of the ICU, ER, and ORs.

I've had doubts and stress over both....watching/waiting and also the surgery. While it is very rare that it would spread, it is my understanding it is not impossible. My tumor does sit near the adrenal gland.

 

So...here I sit...still scrathing my head. :(

Djinnie's picture
Djinnie
Posts: 769
Joined: Apr 2013

Hi Mom, 

I know that you were against cryo, but If you don't mind me asking were you also offered Radiofrequency Ablation. I ask because it is often on the table for those with small tumours particularly if it is situated close to the periphery of the kidney.

I had RFA on my first tumour in Dallas, I can tell you that the recovery is remarkably quick. I was very sore for a few days which petered down to a dull ache, but no agonizing pain. Obviously you have to be careful for a few weeks, as with any surgery. It wasn't invasive of course and I was out shopping soon afterwards. Just wondered if that was a possible option, although you may well have discounted it already!

 

Djinnie 

elpasorudy's picture
elpasorudy
Posts: 78
Joined: Jan 2013

Mom2two,

I was diagnosed with a 2.5 cm mass on my right kidney and am scheduled for a partial nephrectomy 10/16. One urologist gave me the option of waiting six months and undergoing another CT scan.  I later met with a second urologist. They keep reassuring me that the mass is slow growing. But then they add that one percent of the tumors are aggressive. I opted for surgery because I don't want to take the chance of it spreading. It's one of those damned if you do and damned if you don't situations. Everybody has to make their own decisions. I'm not a believer in diet as a cure for this reason: I worked as a licensed clinical social worker for a hospice for 12 years and never came across a situation in which diet put someone in remission or cured their cancer. I had a handful of patients who traveled to other countries for nutritional healing. It never worked. My wife, who died in June from uterine papillary serous carcinoma, survived for nearly five years due to traditional chemotherapy and radiation. She had a good quality of life. She initially was given a year to live. In the last year of her life, she met with a Boston nutrionist and tried his diet for two months. It made her sick. I do believe that a healthy diet can prevent cancer. I also worked with hospice patients who delayed treatment. In every case, the delay compromised their chances at recovery or life extension. I am just relating my experience. I would say gather as much information as you can about kidney cancer. Get a second opinion. Use this board as a resource and then make a decision. Anxiety is normal. It's good to vent. Use a friend who is a good listener. I am 67 and am not looking forward to surgery. But if I get through it OK, it should extend my life. I am not ready to throw in the towel or deal with metastasis down the road. Keeping you in my thoughts.

 

 

 

adman's picture
adman
Posts: 260
Joined: Jul 2012

 

I had an "Open full-neph" non-robotic surgery a little over a year ago on 07/17/12 on my right kidney. My RCC tumor was 5.0cm & the path report came back Stage 1 / Grade 1 all contained and no vusual signs of spreading. They thought pre-surgery based on the CT and other imaging that it was a 6.2cm tumor.

I had never had major surgery before so I was very frightened of being put under and that was a big hurdle for me to get over but obviously I didn't have the choice given my tumor size on whether to wait, the only question was whether to have a partial or full nephrectomy. I saw 3 specialists and spoke to another one who read all my imaging. It was a mixed bag on which way to go. I was on the borderline but it still would have been a judgement call once they opened me up. I chose to go with a full based on many factors.

My healing was pretty normal. I went home on the morning of the 19tth, which shocked me, but the Dr was obviosuly pleased with my progress. I spent one night in ICU after surgery, but that was scheduled, not a surpise. I had a pain killer drip of something, probably morphine, that I controled when I needed it, and I stopped 'hitting' myself after the first day. I was in very little pain but was very unconfortable, especially when they needed to move me. I was walking on the 2nd day and that was very, very slow going, which to this day I mostly attribute to the pain meds having an effect on your mind/ body...everything is off.

I came home and spent most fo the 1st week in my recliner but was able to move around and walk very slowly up and down dtarirs 1-2 times a day w no help. I git a slight infection at the incision site so antibiotics were prescribed. The next few weeks were spent mostly sitting and doing sone slight walking, but I was driving in 2-3 weeks, but I did not try and really push myself very much and listened to my body.

I had help cooking, helping me shower using a chair, and going to the bathroom, etc. It was very slowgoing. 

Honestly, the worst part for me was the constipation for about a week :( / and bloating that never seemed to want to go away. Loose drawstring shorts and tee-shirts were the uniform. 

I'll be honest, I'm not sure I would have healed any faster with a partial/ robotic.

 

All the best with your decision/ God Bless!!

 

 

 

 

 

 

 

 

Gordon Charles's picture
Gordon Charles
Posts: 91
Joined: Jun 2012

mom2two....when they open you up they have lots of room to see and work.  They give you wonderful drugs to sleep and then drugs after... the toughest part will be to get your bowels working again... dancing comes later...just get some help with the children for the first several weeks...and take your time.....

foxhd's picture
foxhd
Posts: 1901
Joined: Oct 2011

I had an open also. For an amazingly healthy strong, active man, I've had many surgeries. I believe that I will heal from anything. So Bring it on. You'll heal also. Just do what your Doctor thinks is best. The patient isn't the one to make many medical decisions. A couple days of reading the internet is not like a career in medical school and the OR.

rainsandpours's picture
rainsandpours
Posts: 93
Joined: Apr 2013

Mom:  we've chatted about this.  I totally understand your reluctance.  Seeing as we have identical tumors in the same region, the option to sit and wait on it is very tempting... but...you're young and healthy right now-therefor it's better to have the surgery than wait until some time in the future when you might have other health issues to deal with concurrently.  I speak from experience on that one.  My first cancer is on hold for treatment until after the kidney is taken care of, even though it's the more pressing cancer.  Why? Because kidney is simple, thyroid is not. 

 

Just yesterday, I was having a bit of panic over the surgery myself.  So tempted to chicken out and cancel.  But I won't.  Mostly because I've arranged friends and family to help take care of my little guy, and they've all requested vacation time or booked flights.  It's no easy surgery certainly, and for sure the pain willl be major suckage (which is another issue- my docs are stingy with meds), but you will get through it!  Hang tough soul sista.

 

 

canadiancruiser's picture
canadiancruiser
Posts: 7
Joined: Apr 2013

Hello 

I had it done on Sept 13 2013. cut front to back on my right side and there was pain but wasnt as bad as i thought it would be.

the meds are good so you will be fine. i had a button to push if i needed more meds and used it when i knew they were going to get me up.

it will take a few weeks to get going ,after that you will do alright...good luck

 

jim

GSRon's picture
GSRon
Posts: 1224
Joined: Jan 2013

Ah Jim... how did you do that..?  It is only the 10th..? 

Ron :)

canadiancruiser's picture
canadiancruiser
Posts: 7
Joined: Apr 2013

I had it in 2012. getting old you know, it has been one year for mine and going for my cat on monday..

 

Subscribe with RSS
About Cancer Society

The content on this site is for informational purposes only. It is not a substitute for professional medical advice. Do not use this information to diagnose or treat a health problem or disease without consulting with a qualified healthcare provider. Please consult your healthcare provider with any questions or concerns you may have regarding your condition. Use of this online service is subject to the disclaimer and the terms and conditions.

Copyright 2000-2014 © Cancer Survivors Network