Wee hours before nephrectomy/caregiver

It's 3 hours before my fiance, and i with his sister and my good friend will leave for surgery for Tim's nephrectomy and i am very scared and can't sleep...I am very positive that the surgery will go well, but where it has been so long since the last surgery was cancelled, i am so afraid of what the surgeon will find  when they start out with a laparoscopy where the tumor has grown 2&1/2"  (6 cm) in the last 10 weeks, my fear is that it has metastisized worse at this point.. Tim is doing so good with hardly any symtons at all right now, just fatique, that he is afraid that the surgery will make him worse, we both have fears, to look at Tim you would never quess that he has stage 4 mrcc, he has gained weight, a very healthy appetite and works everyday, but the oncologist has said that everybody is different...I just fear that he may start to go down hill after the surgery, has anyone experience  in their loved ones that this has happened to ?? What should i expect after surgery ?? Tim will be going on Sutent the first of December to try and get his lungs to shrink...I am just looking for things that i should watch for, Tim has never been thru major surgery before and anything that i should know about would be greatly appreciated..Maybe a few of some of your experiences might be very helpful for me as to how Tim might be feeling after an open procedure, which we are not sure of but, highly likely that it will done that way...Thanks all of you for reading,

Rebba

First of all, it's great that Tim is finally on the brink of surgery, after all the delays you've been through. But, yes, it's always worrying to think of someone going under the anesthetic, and under the knife. II know it sounds odd, but actually, Tim has the 'easy bit' - he won't have the faintest idea what is happening to him! But you will - and you'll sit there chewing your fingernails. I know I did! Has the surgeon given any idea of how long the op will take? That will give you some idea of timeline to hang on to. An open will doubtless take longer - my husband's did, and about half way through I panicked, and phoned the hospital, and they just said 'still in theatre' - at least twice! - and then I got so fraught they very kindly said they would ask the surgeon, so they tannoyed him or whatever in the middle of the op, and phoned me back to say that the surgeon said he was doing fine, but they'd had to open, and it would be a few more hours yet.....

Then the surgeon very kindly phoned me himself to say it was all done, and my husband was off to be watched in intensive care, as he'd had to go into the lung, because the tumour was into his diaphragm.

So, if it does 'open' expect longer surgery. But, one really goood thing about opening is that the surgeon then can have a really good root around, and scrape everything out! The downside is a longer recovery, with a big scar.

Although I can well understand - and remember from my own! - your anxiety, once the op is over and done with you will start to relax. Yes, it's major surgery, and men are, naturally, loathing of the knife - my husband said it wasn't the cancer so much taht scared him as the op!! But once it's over things will improve. There's obviously going to be a lot of recovery time, probably around 6 weeks if it's open, and quite a lot of post-op pain, but they will give him loads of painkillers, and keep him in surgical stockings to ensure circulation etc etc. One thing they will say is that it's esential to get him out of bed ASAP and walking - walking, walking, walking! Thagt really helps things heal. They'll ccheck the wound is healing cleanly - expect the clips out in about a week, I seem to recall (it's actually painless, though it's gruesome to watch - like staples being removed!!!), and if the wound DOES get infected, they'll put him on antibiotics.

They definitely encourage you to get out and about ASAP, and especiaqlly on the walking front. Don't worry, byt the way, if the scarline gets very dark red - this is a good sign that it's healing! My husband's did get infected, in fact, and the nurse had to (look away now if you're squeamish!) squeeze out the pus and clean the surface again. But it all healed well. If he needs it, they'll give him stuff to ease his bowel movements and get him 'regular' again.

With the primary out, you may notice a cessation or lightening of any syumptoms, eg, my husband's night sweats - caused by the primary tumour - ceased abruptly, which is great. You may feel overall better, too, as the cancer burden has been massively, massively reduced in bulk, and it's not 'feeding' off the rest of the body any more. Getting rid of the primary can also sometimes even kill off the mets as they've lost their 'mother tumour' and can certainly slow them down.

You'll probably get a post op scan about 6 weeks after the op, to see what else is going on, and then, as you say, start on the Sutent.

Please don't worry about things too much, udnerstandable though it is. It's just great that they are getting on with the op, and getting that tumour OUT. It's a huge pyscholgoical relief as well. And it's a sign that treaqtment is really getting under way, and the docs, and Tim, are starting to tackle it.

I hope the op goes smoothly, and quite frankly, I advise a couple of glasses of wine, unless you need to drive. I was allowed into Intensive Care, even though it was midnight, and the nursing staff were just WONDERFJUL. It was such a relief to see my husband, chest going up and down, heart pumping, even though he was out for the count and wired and tubed up all over the place! I stayed with him all night, so relieved it was over, and he'd come through.

Take care, and let us know how things go. Best, Julie. 

 PS - five months on and the scar is now pretty thin and slivery, almost unnoticeable! It seems like a long, long time ago...

Hi Julie,'

i want to really thank you for your kind and considerate message, i'm just getting to my messages now and it was so good to read yours...Tim made it thru the 5 hour surgery, and a lapraroscopy only had to be done, it was like a gift from God hearing that news, the surgeon was able to get everything out, the kidney, lymphectomy, adrenal gland, and metastastic residue all around but when i asked him about what he thought prognoises was after being in there he avoided the subject and only said that treatment was next...I was so happy to hear at that moment that he was able to do it without an open procedure that i let it go for the moment, but i will track him down most likely tomorrow to get him to take more time with us and explain more, he was a little to breif with me today...Tim is doing remarkably well and was sitting up in a chair when i called him tonight with much more fight in his voice, the most i think that i have ever heard...I am so proud of him right now, and that he is doing so well, it's actually amazing how much releif that i have now then how worried and anixious that i was16 hours ago, and you are so right that primary tumor is gone and it can't feed off Tim anymore, now it's up to the treatment and our fight to try and get a handle on this cancer to get those lung tumors to start and shrink...One thing that was good news was also that since we also have an oncologist here in our city that Tim can have his treatments here and his ct scans and bloodwork done in all one place and with winter coming it will be alot easier for us, unless something goes wrong then we can decide to go back to Lahey if we have to....Tim will only have to see the surgeon for his post op and i am really releived in a way we have had nothing but problems from the get go going there in the first place all this waiting i will still say was not called for and we never should of been treated that way in the first place...The only thing that i am insisting on is getting a priminary report from the pathologist before Tim is released from the hospital, thats something that i feel that we shouldn't have to wait for, we have waited long enough to get treatment and we shouldn't have to wait 2 weeks for a cell type and grading thats where the real truth with Tim mrcc lies, that is where i will find out all i need to know, and the oncologist here needs to get Tim on treatment and our oncologist has asked several times just for a biopsy to get Tim on the right treatment, we are all sure that it's clear cell, but without a path report the treatment still gets held up, i think that the surgeon can atleast get us that before Tim is released...He is the one that told me it takes 4 working days to get the results in the first place...So the fight still goes on, no matter which way you look at it...I am at peace tonight for the first time in a very long time knowing that the surgery is over, and it'll be the first night in a long time to that i will beable to sleep soundly...Thanks so much for your responnse Julie, it is so good and comforting to know that women like you have been so helpful to me and have givin me such great sense of releif that i am not the only women that is going thru this alone...Hope you have a good evening and thanks for thinking of me, i now have so much more hope today...

Rebba

Dear Rebba

That's fantastic news, and you must both be so releived that 'the big one' is over! It's the first and biggest hurdle, and now it's done.

As you say, ensure you get a good clear path report both as to cell type and grade, as the former, I know, if it's not 'regular' RCC can mean different treatment regimes are in order.

If Tim follows my own husband's course, he'll be left in peace by the oncs for a few weeks now until he's recovered from the op - and how wonderful it was keyhole as the recovery is significantly faster than open! - and then have another scan to get the latest update on mets, and then on the basis of that presumably start drug treatment.

I wouldn't worry too much about the surgeon now - they are 'knife guys' and treat everything by cutting! (conversely, oncs are 'drug guys' and tend to treat everything by drugs - which can mean, by the way, that they poo-poo 'interventional' stuff such as cyberknife, ablation etc, which can sometimes be effective on mets!).

From what you've posted earlier you are a very feisty, determined lady, and will do all the research necessary, and fight your corner to get the best treatment for Tim, so he's in 'good hands'!

Finally, have you joined the kidney-onc list? It is even larger than here (lots of us are there too), and I find it invaluable. You can join on http://cancerguide.org/kofaq/

In the meantime, I hope you can find a bit of relaxation time now, in the knowledge that this first big hurdle has been passed. As you know, the whole cancer game is about 'hanging on', because new therapies and possibilities are always in the pipeline. The principle goal now is 'living with cancer' with the emphasis on 'living' (and achieving the best quality of life possible).

All the very best - Julie.

Hi, Rebba!!

Uh, yeah.....what Julie said!  lol....I can't really add much to it as she pretty much covered all the bases.

My husband, Dave, just underwent his radical left nephrectomy 2 weeks ago.  He got the open procedure and has an incision which goes from above his belly button all the way around to his left side under the rib cage.  The surgeon said by the time he got the kidney, adrenal gland, and lymph nodes out the whole mess was the size of a football.  Yuck!  And let me tell you, Dave is SOOOO glad to get that tumor out of him.  It has been a real psychological boost to us to know that the biggest part of the problem (that primary tumor that started it all) is OUT and now we can concentrate on all the other problems like the lung mets. 

I'm glad Tim was able to have his surgery laparoscopically.  It is still very painful, but the recovery should be a lot quicker and easier.  Poor Dave is having quite a bit of pain, but he's really doing well and getting stronger every day.

I am so proud of you and Tim!!  That's great news!!  Keep up the good work, and keep us posted on Tim's progress as we do care about you.

Best wishes,

Nancy

Hi Julie,

i just wanted to let you know that Tim is home and resting very comfortably, i got  him home yesterday morning and has taken 3 short walks, he's doing so well, a little sore, but manageing well,...We did get a little of the pathology report, which was a little better than i expected the pathologist rated it as a T3A-N1-M1, the adrenal gland had 2 metastasized tumors and out of 6 lymph nodes the surgeon took out, only 1 was affected. of coarse the lungs are affected, which we already knew, but the tumor was smaller and the only 1 node as affected so that was a little better news...All tho, it's not great news i haven't got the grading or cell type yet, i will get that next week and then i'll have an idea on prognoises ...The most important thing right now is the primary tumor is gone and Tim is really doing well and treatment is the next step, and then we'll just go from there...I am much more relaxed and sleeping much better, so things are really good for the moment..I just wanted to let you know how everything was going, thanks so much for being here for me, it so nice to know that i am not alone in all this, have a great night..I hope things are well with you and your family, i am thinking of you, write when you can...

Warmest wishes to you all..

Rebba

That's great news, Rebba!!  I have been thinking about you and Tim and wondering how everything has been going, so I was glad to see your update.  Isn't it a huge relief just knowing this horrible primary tumor is OUT of him!!  Yahooooooooooooo!!

God bless you and Tim,

Nancy

Good morning Nancy,

what a great releif that this part is over, that the surgery day finally came, after all this waiting, i can hardly beleive that last week is over but the most important part he is doing really well and he is home getting stronger everyday...He is not taking his pain med that much, and very stubborn about that, he does take it when he can't stand the pain any longer, after all the moving around that he does, and he isn't complaining so i leave him alone to do it the way that he feels comfortable with taking it...I don't know to much about when his treatment should be started, wheather he needs to get more rest before starting it or that he needs to go right on it...If you know anything about that it would be really appreciated to know about what or if the is a time limit wheather we wait a bit if that would be something that i have to look into right away...He does have an Dec 8th app with our oncologist here, or do you think thats to long a wait ?? Any advice would help alot as to what i should do next, i would think he needs to heal a bit before he starts, just in case he got nausea from it, i am sure that would bother the area if that happened...All i know is he is doing really well everyday and i am actually sleeping what a releif that has been for me, it had been so long that i have actually been able to sleep well in such a long time...I am so much more calmer, too this has all been such a big releif off my shoulders that i can actually enjoy living again for a while...We have had a really good weekend, no company, alot of calls basically it's been very quiet it's what we both have needed for such a long time...He will be going back to work when he is feeling better, his job requires no lifting, he just does alot of  driving so after he is off the meds and up to it, then he will go back to work...He isn't the type to just sit around, Tim has always been a worker, i just want him to be physically ready and he already told his boss that he will start out very slow at first till he is ready to get back into it...I know him he will go back before the time he should too, but like i said Tim is stubborn, and basically does what he wants to do, so alot of the time he doesn't listen to what i have to say about it...It's his body so he will know what he is ready for, i suppose...Well Nancy thanks so much for getting back to me, you have been alot of help getting me thru this, it was a really hard thing pushing to get this surgery and all the time and phone calls pushing them all to get him in, but the releif was so well worth it and it's over now, hope your day goes well and things are going good with all of you, please keep in contact, and so will i...

Warmest wishes to you all and many thanks for your support..

Rebba

Sounds like Tim is really a fighter and he's doing great!  That's wonderful news, and an answer to prayer!  Regarding getting back on treatment, well....Dave only had 2 weeks "off" the Torisel for his surgery.  They wanted him to heal for 2 weeks before resuming it, and he just got a dose of Torisel last Tuesday now.  He had an open radical nephrectomy, so I think 2 weeks off was a good thing, but we're so glad to have him back on the Torisel now.  Just think....without that nasty primary tumor, the Torisel can focus all of its power on those dreadful mets that are lurking about!

I can't really advise you on when it is appropriate to get Tim started on a treatment, but Dec. 8 is still 2 weeks away.  The sooner, the better in my humble opinion, but I'm not a doctor.  I think at least 2 weeks from surgery is a reasonable amount of time, but you don't want to let this go on for a long time without treatment because, even without the primary tumor, there are still the mets to consider.  Perhaps you could call the oncologist and express your concern and maybe you can get your appt. moved up, or see if you can be put on a "cancellation" list so if someone cancels their appointment you can have that time so he can see Tim sooner.

It is great to hear from you again!

Nancy

REbba  - so glad to hear Tim is doing well - yes, men don't listen, do they, but you know, stubbornness isn't a bad thing when it comes to illness - means you won't give in to it, either! My husband made a very good recovery from the op, and was extremely determined to accelerate recovery, eg, he was cycling away around the block much sooner than he was 'supposed' to, and he was certainly driving, I know.

We had a six week breeak between the op and starting Sutent, but then he had full surgery, so it would be shorter with keyhole.

If you wanted to consider HDIL2, this might be the time to check it out, as I believe that it MAY be best to try this before Sutent (though I don't think going on Sutent means you can't try HDIL2 sometime). BUT you will need to get a head scan done if you want HDIL2 - whatever your doc says! I know of someone that had HDIL2 without a head scan, it didn't work, and he was put on Sutent (with good results) but now he's discovered he had brain mets, so the HDIL2 ordeal was wasted all along! So you do definitely need to get it clear that you don't have brain mets, if you do want to try HDIL2. If you do have brain mets, and get them seuccessfully treated, then there is no reason, so I understand, not to try HDIL2 - but in the meantime, while they are treated, you may be on Sutent anyway???

All the very best, and so glad you are well over this first big hurdle, and can 'take a break' mentally a little now.

Best, Julie