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butterfly wings
Posts: 28
Joined: Mar 2015

Hi All

 

I'm a newbie to this board.  I had my right kidney removed nearly 3 weeks ago.  It was a 4.5cm ccrcc stage 1 grade 2 so caught early.  

I'm feeling strong and happy.  Everyone in the community has been so good and kind to me but I think I needed to connect with people who understand what I am going through.  Everyone is asking me how I am

...my answer is always that I'm great..I had cancer that I didn't know I had so I've beaten it before I even knew for sure I had it.

 

I'm not from America, I'm irish so happy st Patrick's weekend.

Thanks for reading and I hope you can take time to post and say hi....oh and give me any advice.  God Bless   oh and icemantoo sent me in this direction so thanks 

shaval123
Posts: 9
Joined: Nov 2014

This board is great. We have all been where you are and this is a wonderful place for info, fellowship and encouragement.

Happy

St. Patrick day to you also.

Sharon

 

 

icemantoo's picture
icemantoo
Posts: 3216
Joined: Jan 2010

butterfly wings,

 

I see you have found a good place to land on this side of the pond.

 

At 3 weeks out it only gets better and at 4.5 cm barring any set back you should be around for many years to come.

 

 

Icemantoo

 

butterfly wings
Posts: 28
Joined: Mar 2015

Thanks for the welcome

 

My urologist says there is no reason to believe it will return.  

It's mothers day here tomorrow so extra celebrations.  I have 3 beautiful babies....The youngest isn't even 1 yet so it was hard to be away from him when I was in hospital.  But I've managed to continue feeding him.

 

My first check up is 6 weeks post surgery....is that the same in the US too?

 

The picture I put up is me in the hospital the night before my surgery...The old me.

butterfly wings
Posts: 28
Joined: Mar 2015

Thanks Sharon.

There is no support page like this in Ireland so I hope you don't mind me joining.  I used to travel to the US on business a lot and my company is hoping to open an office in Cali this year.

icemantoo's picture
icemantoo
Posts: 3216
Joined: Jan 2010

Butterfly,

As you will see over a short period of time there are more than just us yankees on this board. We have members from England, Europe, Asia and a whole lot of Canadians. Although I have not seen her in a while Eims is from Ireland as well.

 

(straighten your picture, it appears sideways on this side of the pond).

 

 

 

Icemantoo

kuzman60's picture
kuzman60
Posts: 31
Joined: Nov 2014

oops ,my fault:))

kuzman60's picture
kuzman60
Posts: 31
Joined: Nov 2014

Hello butterfly ,i have almost the same size tumour in the midlle of kidney,no invasion into renal pelvis or vena cava.I am not sure what  the chance for returning is  ,but here in Bulgaria the scanners are every 3 month first year and every 6 month second one  , since I have the surgery.I have had two since  the surgery ,bone scan and CT scan and now I"ll have CT scan again  appointed on  tuesday .

butterfly wings
Posts: 28
Joined: Mar 2015

Couldn't figure how to straighten picture but I'll try again tomorrow

  It's bedtime here now.

 

Kuzman I think it's scans every 6 months here.  I had a chest X ray in the hospital as I've been suffering with my lungs and breathing since the operation.  

I don't think it's normal here to see an oncologist just the urologist.  I must ask him at the follow up appointment.  

daisy60
Posts: 1
Joined: Mar 2015

Hi from Italy,

my husband is 48. He had is left kidney removed and urothelium. It was the most aggressive form of cancer. Size 4.5.

I am not sure of the survival rate as there is no support here in Italy. They just leave you in the numb.

When I asked doctors they were real mean. They said what a stupid question to ask. Also I asked my psychologist he replied the same way.

He has an ultrasound 20 april and cat scan 20 July.

I am really anxious this could come back and hit his right kidney. 

I have done my research online since doctors did not reply and read that there could be cells which have not been detected which could create cancer once more.

Also doctor who operated was pretty icy saying it could hit his right kidney and he could go in dialisis anytime. How would he know he is no clairvoyant.

Does anyone know if he stands a chance?

I am pretty scarred of recurrence.

We have two girls aged 10 and 15 and we both have lost our jobs.

 

thanks

Daisy

Positive_Mental_Attitude's picture
Positive_Mental...
Posts: 454
Joined: Jul 2014

Hi daisy 60--it may help if you start a new post and we can better answer your questions.  One question I have is when was your husband's surgery?  Generally speaking, as long as the cancer has not spread, the chances of survival are excellent.  I am sorry your medical team is not helpful, and they sound mean. 

jason.2835
Posts: 337
Joined: Nov 2014

My first follow up after surgery was at 4 weeks. That's also when the doc went over pathology. So if you have to wait for your pathology report that long I would request it early or request an earlier follow up... but as you already know the subtype and grading I assume you got the path report already.

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

Hello and welcome. I am glad to hear of your early diagnosis. That is wonderful for you and your family. Being told you have "beaten it" is great but your life will probably be forever changed an it is OK to feel sad, overhwelmed, even though you have "beaten it." No one here will judge you here for that, cancer is cancer, your journey is your journey. This is a supportive place. 

I post here on behalf of my husband. He did not get such an early diagnosis but was has so for been lucky to have moved on with his life with only one kidney and gets scanned every 6 months. 

 

Please drink lots and lots of water, that cannot be stressed enough. My husband reallly "starts to feel it' if he doesn't drink enough. 

butterfly wings
Posts: 28
Joined: Mar 2015

Thanks for the comments sblairc.

 

I've not felt sad or overwhelmed.  It's all a bit surreal to be honest.

I had cancer I didn't know I had it and by the time I found out for sure it was cancer it was gone.  I'll have my scans but won't even pass the time of day thinking of them....If it comes back I'll fight that battle.

I would have been quite a worrier but before my cancer diagnosis I had decided not to stress over the worries I cannot control and it really helped me.  I'm very much a pragmatic person and I don't dwell on what ifs.

 

Maybe one day I'll break down and cry and be angry but not today...today I need to be strong for my kids......

 

I drink copious amounts of water.  My 9 year old has started doing juices for me too with her nutri ninja.  She got watermelon yesterday to give me tomorrow (it's mothers day here tomorrow)

 

I hope your husband is well.  I can't imagine my husband posting here.  He's very much of the opinion "if I ignore it it will go away".  He is super supportive but doesn't talk about it.

jason.2835
Posts: 337
Joined: Nov 2014

BW,

I also had ccrcc stage 1 grade 2; tumor was 2.8 cm found incidentally. Currently recovering from emergency gallbladder surgery. 2 surgeries in less than 6 months makes Jason a dull boy...

But there is a bit of surreality to the situation; the discovery and removal all happen so fast that sometimes you don't fully realize what happened until time passes. I had "made peace" with the good possibility that the tumor was malignant before removal, but they don't tell you for sure until after removal and at that point all they want to do is tell you how lucky you are.

It's probably going to be up to you to remain vigilant regarding your future care; I've found here in the States the cancer system is diverted towards the Stage 3 and 4ers. For obvious reasons. They need the care the most. But that doesn't mean you want to get lost in the shuffle. Make sure you are comfortable with the way your medical professionals are handling future scans, etc.

I'm due for my first follow-up appointment this Monday; it's going to be a big indicator of whether I will be happy with my level of care. I'll be posting afterwards to let everyone know how it went.

 

butterfly wings
Posts: 28
Joined: Mar 2015

I had my gallbladder removed with my kidney.  I forget about it all the time.

my husband made buffalo chicken wings earlier and I had a few....my non gallbladder didn't like that....chicken wings are not my friend anymore. I am not impressed

shaval123
Posts: 9
Joined: Nov 2014

I love your attitude about this situation. I feel the same. I was so calm and positive from the start that my family couldn't believe the calm conversation considering we were talking about removing my kidney and a 5 inch mass. As I do with most things in my life, I put it all in prayer and left it in God's very capable hands. It is well with me and I don't really feel like I had cancer though I did.

I love life too much to sit and dwell on what "might" happen in the future. I trust my doctors fully and live each day with joy. Sounds like you do too. Carry on my friend. Everything is going to be alright.

 

butterfly wings
Posts: 28
Joined: Mar 2015

What else can we be but positive.

I like to party and to travel.  I think I'll be doing a lot of both of them this year.

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

That they've got it so early. Youre right moaning and groaning will get us nowhere. You have to be positive. If you want inspiration on how its done look at Fox or Djinnies posts. Oh and I'm from London, so happy mothers day, may you have many more!

butterfly wings
Posts: 28
Joined: Mar 2015

My team never told me how long I should stay off work??

For just the gallbladder my primary doctor said 4 weeks is the norm.  Nobody mentioned how long for kidney & gallbladder  One of my consultants team mentioned 4 weeks leave.  I nearly feel I could go back but I don't want to overdo it.  I have a nanny who comes to mind my kids so I've really been able to recover well.  

I've just started lifting my smallest son.  Just for a cuddle or out of the bath.

I've no pain around the incision but my hip bone is totally numb (but sore).

I don't take pain med's and haven't since about 10 data post op.

icemantoo's picture
icemantoo
Posts: 3216
Joined: Jan 2010

Each person has their own unique experience as to when they have recovered enough to go back to work. The most consistant observation I have made over the years is the age of the member.These 30 and 40 year olds have it much easier than I did when I had my neph just after turning 59. As the members get in their 60's and early 70's recovery is a much slower process.

 

Icemantoo

Allochka's picture
Allochka
Posts: 869
Joined: Nov 2014

Hello,

Congratulations on early diagnosis and great prognosis! You'll be just fine!

i'm from Europe as well (Latvia), my fiance had surgery in DEC 2014 for Stage 1a grade 1 tumor. He received pathology soon after surgery, but his first follow-up is in 3 months, coming next week. He has to get blood work only, but will get an ultrasound scan on his own initiative. So only after the meeting with doc he will know exact plans for long-term follow-up. 

But no matter what doc will say, and no matter that recurrence chances for all you 1-stagers are really-really minimal, this board taught us as at lest 6 months scanning for couple of years would be prudent to do.

as for retrun to work - my fiance started working fulltime 1 month post surgery, and felt he could've started earlier. He had an open partial.

take your time, get full strength back, it is a major surgery after all!

 

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

I am sorry for the reason you found us, but welcome! You will find this a wonderful, informative and supportive group.

You have a great attitude about all of this and I have a feeling, you will be just fine! Please try not to overdo it....you have had some major stuff done. It takes a while to heal inside. (easier said than done when you have little ones, I know :)

Follow up care is important, so please stay vigilant with that.

Hugs,

Jojo

butterfly wings
Posts: 28
Joined: Mar 2015

I've been to Latvia, Riga.  Beautiful city.  Proud to have swam in the baltic sea and bought some Amber.

 

I think the follow up seems the same in most countries.  It's good to know what the norm is....

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

Returning to work is good, but pace yourself. It obviously depends on the work you do. Take it easy tho' I went back full time too soon and knocked myself up (dont laugh, yanks it means something different in the old country) and I'm back working half days.

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

Butterfly wings,
Love your username, it's so nice. I think there are things to learn from you, your opinion and positiveness is really good, after seven months i do still feel sorrow, nights, damn nights, they're the worst parts but I feel much better compared to the first couple of weeks. I love travelling too so my hubby arranged a short abroad trip, fourth week post surgery, that was a great decision, I forgot all about the C word and enjoyed it, then I came back to work, first days I needed to take rest during working hours but it got better within few days.

Forough

aamdsi
Posts: 284
Joined: Apr 2014

I had an open partail and went back to work full-time a month after. Was a bit tired at the end of the day, but not sure that wasn't because I was staying up later 8-) (I work non to 9pm).

Totally agree with this, "I had cancer that I didn't know I had so I've beaten it before I even knew for sure I had it."  Yes, the nagging reality sneaks back into my head a few times every day - and I HATE walking into the Cancer clinic ...but.  I am also walking out of the clinic too 8-)

My advice...enjoy every day to the max!  For as Igor said in Young Frankenstein, "It could be worse...It could be raining" 8-).  And even it it does rain, go jump in the puddles!

We are surviors!

butterfly wings
Posts: 28
Joined: Mar 2015

Thanks everyone for the lovely welcome and the positive words.  It was mothers day here yesterday so I went to a charity brunch then out for dinner. It was a lovely day.  Tomorrow is our national holiday...St Patrick's day.  I don't think I'll manage the parade but can watch it on tv.

I had been sleeping really well but now that I can turn to my side I feel like I'm tossing and turning all night.

 

I think I've decided to go back to work next week....I'll do reduced hours for 2 weeks then take some annual leave at easter.  I work in an office so it's easy physically.

iceman i'm 35 so I should be back on my feet quicker.  I'm fairly fit too....I like to do multi activity races and I sea swim 2/3 times a week (burrrr the irish sea is freezing

Positive_Mental_Attitude's picture
Positive_Mental...
Posts: 454
Joined: Jul 2014

butterfly, our surgeries and tumor sizes are very similar. Open partial nephrectomy for small tumor in July 2014. I was "dragged" into a meeting for work 1 week after surgery.  It was uncomfortable, but the meeting only lasted for an hour.  I found sitting in my chair upright for most of the day a little bit uncomfortable after I returned to work in 3 weeks, so I propped my feet up on a chair underneath the other side of my desk.  You sound like you have a great attitude towards the whole situation, and as my name implies, attitude can go a long way towards a quick recovery.

cassi
Posts: 2
Joined: Mar 2015

hi butterfly wings,

i too had my right kidney removed 5weeks ago  it was 3.9 cm l , stage 1, grade 2, i consider myself

extremely lucky as it was found whilst under investigation for other issues so i didnt know i had it either,

i under estimated this surgery thought i would be back at work within 4wks,due to be back in work next week

but still having pain and not sure if this is normal or not.  just so happy it was caught early and had no symptoms.

i would appreciate if can anybodycould  let me know how long their pain lasted, and how long it took before they went back to work.

thanks, look forward to your replies

 

 

 

 

 

 

 

icemantoo's picture
icemantoo
Posts: 3216
Joined: Jan 2010

Cassi,

 

There is no single answer for going back to work. Factors effecting this are your age, physical condition, health, whether your surgery was open or laproscopic and the type of work you do.  Four weeks is probably average for easing back to work part time or shorter days to start.

 

 

Icemantoo

 

aamdsi
Posts: 284
Joined: Apr 2014

As Iceman said, each case is differernt.  Even though was back to wark in 4 weeks and back to training in 8, I still hurt.  I think it was a "good" 6 weeks before it didn't hurt except after exersizing or the such.  And more than a few months before it truly felt all better. 

When I did go back to work, sitting still wasn't a good idea so I moved/walked a lot.  Plus I cut my hours back a bit the first week.  Not so much because I hurt, but I got tired easily.

Time is your friend.  Each day will be better.  Just remember to walk and such a lot.  Also, look into finding a PT that can show you some gentle stretches and the such to help strengthen the muscles in your back and side. That helped me a lot.

butterfly wings
Posts: 28
Joined: Mar 2015

My surgery was 3 weeks ago yesterday.  Feel today like I should be back in work.  

I'm not one for sitting around and i'm kinda bored (I have a nanny to look after my 3 beauties).....I'm back to cleaning and cooking around the house.  I've no pain in area but my hip is still sore to touch and I've a stomach muscle that's sore.

I've signed up for a 5km in May and a 10 km in June both are charity events so I may walk them.  I'm hoping to race again in July (aquathon) but I'm not putting any pressure on myself

cassi
Posts: 2
Joined: Mar 2015

must be down to age i think,!! i am 58 had laparospic just into my 6th week still having pain  but

will be back into work next week, i have other issues which may not have helped, gastritis and gallstones.

so have been vomitting a bit maybe that has put a strain on the area, but waiting now for a date to have my gallbladder removed

which is the reason i went for an untrasound in the first place. really looking forward to that !! lol.

 

sounds like your doing really well  buuterfly good luck with your charity events.

 

   

butterfly wings
Posts: 28
Joined: Mar 2015

Hi.  I had my gallbladder removed with my kidney so it was a double surgery too.....It took longer to remove my gallbladder than it did my kidney as the gallbladder was stuck to the liver.

same as me....my gallstones (who we nicknamed Sam and Ella) may have saved my life.....

work not allowing me back next week...told me to take at least another week (here you have to be certified to go back to work and I know my primary doctor will agree with work) so I will pick up.some projects around the house.

aamdsi
Posts: 284
Joined: Apr 2014

I walked a 5k a month then another 6 weeks after my open partial. I was not given clearance to start running again until 8 weeks after so...  BUT did do a sprint tri. 4 months after and did all right (2nd in age)I then did a couple more 5ks and another tri. within the next month. THe 2nd tri was HORRIBLE!  I hurt!  have never had that before.  Actually finished and put ice on the incision. Was also one of the very few times have taken an OTC painkiller.

Was told did too much too fast... Oh well 8-)  Did a another couple 5Ks then a cross-country relay marathon before the year ended.  The runs went well...the relay - well... once again was scolded by Dr. for pusihng that hard so soon sigh

So take it easy.  Plan the bitg things later in the summer.  But do do them! Walking the 5k may be hard (if competitive as I am), but just think ...you are there!

Need to check with Dr. about when you can start swimming - because of the incision.  And don't push it!  Trust me, pusing it and causing yourself "harm" will set you back further and it will be harder to come back again.

There are a few people on this board who are marathoners and triathletes - maybe even an ironman or 2. 

Check with Dr. before you start training again.  And the first run will be wonderful and feel so weird.

Oh did you say you swim inthe ocean? BRRRRRRR!

APny's picture
APny
Posts: 1946
Joined: Mar 2014

Hi Butterfly Wings. My surgery was last March 17th, right on St. Patrick's Day. Which is why I'm convinced it went so well. I thought it was a good sign when they scheduled it for that daySmile I also get six month check ups. Scans, x-rays and blood work.

It sounds like you're having a good recovery but don't rush it! And watch lifting the little one. Your insides may still be healing. I'm glad you found us.

butterfly wings
Posts: 28
Joined: Mar 2015

Thanks for the welcome.  I'm trying not to lift the kids and I think it's been one of the hardest parts of this journey.  My youngest isn't even 1 yet.  I'm still feeding him too.  I've been recommended not to have anymore kids as I take insulin when pg and they think it might be too risky with 1 kidney.

paddy's day was a good day for surgery.  

 

Anyway better try and get some sleep.  I'm on my own with the kids tomorrow as my nanny is off on Fridays.  Be strong

 

 

 

butterfly wings
Posts: 28
Joined: Mar 2015

I now know who to come to.for training tips.

I'm a dreadful runner and struggle to run in races.

I haven't lost any of my weight from my last pregnancy and i'm really keen to return to training.  Many moons ago I trained as a personal trainer so I know my limits and I would be good at sticking to them.

 

Yes I swim in the Irish sea....no wetsuit double brrrr.  I did a charity swim on new years day and it was cold.  I will dip into water next month...no swimming it's too cold.  The salt water would be good for incisions!!

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