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Need Help Again Sorry

Wehavenotimeatall
Posts: 489
Joined: Aug 2017

Da Vinci planned for 21St for 4cm(approx). Mass

Beyound scared that this will be the death knell for me. And I apologise to all those brave people who have it much worse than me and don't make half as much fuss

 

Mass is sitting at top of right kidney.  Doctor says in good position and there is no other sign of any spread

However I keep getting sharp pains in both breasts And under right armpit(god I hate that word) not all the time but I can feel it and I can also feel mass under my rib cage which is just horrible

Do you think that this is a sign that things have spread to lymph nodes

there is no lumps 

Willl they look at the lymph nodes whilst doing a partial 

 

Many Thanks and sorry again

Annie

kw80843130
Posts: 1
Joined: Sep 2017

It is so common to have every little pain cause fear that your cancer has spread.  I have diagnosed myself with so many types of cancer (none of which were accurate) after my kidney cancer diagnosis that I have lost count! Most of the time before they even allow you to schedule the DaVinci surgery they already know that it has not spread.  However, call your doctor to talk to them.  They understand.  I found that I had severe anxiety after my diagnosis, and I finally asked for help.  I am currently taking medication for my anxiety.  I am almost 18 months post-op and still cancer free!  I, too, had the DaVinci surgery, and the recovery is so much easier!  Just remember walk, walk, walk as it will help your recovery.  Drink plenty of fluids.  Don't push yourself - FOLLOW THE LIFTING RESTRICTIONS.  I had a 1.7cm tumor that was removed with clear margains from this surgery.  Sending you thoughts and prayers!!! 

Wehavenotimeatall
Posts: 489
Joined: Aug 2017

you had a great outcome   So happy that you are  doing well

 

its the waiting and the fear which is had to conquer 

Angie1496's picture
Angie1496
Posts: 154
Joined: Sep 2017

HI!  I had Davinci last week for partial nephrectomy.  My mass was also on the top of my right kidney and is 4.5cm.  I had no symptoms of this before.  THe mass was found on a CT looking for kidney stones on the other kidney.  It had clear margins and no sign of spreading.  After the diagnosis I would have random pains on that side near my heart or breast.  I think it was purely anxiety!  other than the expected pain from the incisions my recovery has not been horrible.  

Rockspin
Posts: 77
Joined: Aug 2017

I also had random pains on the opposite side but since my surgery I haven't felt them.

Wehavenotimeatall
Posts: 489
Joined: Aug 2017

You are both very kind... 

 

thank you for your time and advice I will try to stay strong...

 My doctor must be fed up with me ringing him. I am fretting over everything 

 

Annie

 

Angie1496's picture
Angie1496
Posts: 154
Joined: Sep 2017

If talking to your doctors give you peace of mind by all means call!   I had 3 specialists and was calling all of them over the course of a month before I chose which one I wanted to do my procedure.  try not to stress too much about everything. I know it's hard to do. I was and am in those shoes. 

medic1971's picture
medic1971
Posts: 195
Joined: Sep 2015

Annie,

You are in a state of mind know as hyper vigilance.  Anytime you find something wrong, or out of the normal, with your body you will automatically assume the worst.  It took me about a year to get past this in my head.

 

Here is something you DO NOT want to happen and that is letting this turn into PTSD.  You will survive this and it would really suck to spend the rest of your life worrying about it returning or coming back.  There is a mental battle you will fight with cancer and that is a battle you may need help with try and find a good therapist and psychiatrist.  That's what I did and it helped so much.

 

I've worked in healthcare for over 20 years, mainly emergency medicine, as an EMT and now as an RN so you can always inbox me if you have any questions.

 

To answer your questions:

 

Do you think that this is a sign that things have spread to lymph nodes: No

 

Will they look at the lymph nodes whilst doing a partial:  Unless they saw swollen nodes on the CT Scan I suspect they will not remove any.       

 

Hang in there!

Jason

marosa's picture
marosa
Posts: 333
Joined: Feb 2015

sitting at top of the right side kidney (6cm) but had a partial and kept 70% of that kidney and no lymph nodes were removed.  It will be 3 years the 30th of September.  Hang on, its a difficult time but you will go thru and have your life back.  I did not believe this at the time but it is true!  And your fears you will learn to tame them.  We loose so much energy worrying!  I know its easy for me to say that now but please trust us.  Hang in there, you will be fine.  Put trust in your caregivers and in yourself.  

Angie1496's picture
Angie1496
Posts: 154
Joined: Sep 2017

Marosa,

your comments helped ease my worries some... I mine was also at the top right kidney.  4.5CM.  I kept 90% of my kidney. Had a partial 2 weeks ago tomorrow.  No lymph nodes taken.   I see my Doc tomorrow for follow up.  But your wors really helped my worries of "what if"

Wehavenotimeatall
Posts: 489
Joined: Aug 2017

Thank you

Great to hear your experience and thank you for holding my hand

I am trying.... 

Annie

Jan4you's picture
Jan4you
Posts: 1326
Joined: Oct 2013

WHew.. I can understand why you feel the way you do. You are listening to your body. And yes, we do become hypervigilent..for good reason!

Before my surgery, I had pain in an area that the Urolgoist/surgeon said was not related to the tumor. My other doctor said it was not related to what she was treating me for. My primary said we'll we see. If its gone after surgery, then you know. Well it finally left after surgery. It was NOt in a typical place. But you can have REERRED pain.

Now you seem to feel it could be in the lymph system. Again, let the surgeon note that as they DO check for possible spreading lymph node around the tumor. AGain ask your surgeon how they check lymph nodes as you are having something noticable under your arm/breasts. 

Let us know how you are doing. And we'll be here for you all the way ok?

Sending you calm, serenity and HOPE for a better future!

Hugs, Jan

larry54's picture
larry54
Posts: 14
Joined: Sep 2017

As a guy, I can't comment about those particular pains.  However, as someone else pointed out, once you are diagnosed with cancer, every new pain that comes up makes you think it has spread somewhere else.  This has happened to me many times only to find in my next scan that I am just fine.   I do understand the fear.  I live it every day. Be happy that you caught this early.  That is a wonderful thing. 

 

Angie1496's picture
Angie1496
Posts: 154
Joined: Sep 2017

Annie...

 

Didn't you have surgery yesterday?   How are you doing? 

Wehavenotimeatall
Posts: 489
Joined: Aug 2017

surgery on thurs 21st

thank you for remembering me and also to those other special people who emailed    Your kindness  have truly helped me over the  past month  and I will always be grateful  You know who you are

Da Vinci partial on a 4.2 mass

surgery went very well but I have had a few very very tough days  I am sitting in hospital at the end of day four and all I can say is that iceman was right  It's hard   I would love to meet these lucky souls who go home within 48 hours

Surgeon seemed happy   He is a perfectionist so he is not been too cork popping until he sees the Pathology but he said that there were no surprises   reckoned size  was 4cm

said it was definitely cancerous from what he could see

said there was a layer of fat round it   In my drug induced state   I keep thinking that that is bad news but I will see him before I leave so will ask.

I am left with approx 80% of kidney  and I know that if he had any doubt he would have taken the lot

 I will write further when I am stronger and have the results

I feel a lot calmer but know you never stop looking

 

At the minute I don't know what I am

Cured

Living with cancer 

might be cured but just in case  we are wrong you have cancer

Some of my symptoms have gone   Others haven't           

Sometimes Good does happen 

Annie

 

 

 

 

 

 

Angie1496's picture
Angie1496
Posts: 154
Joined: Sep 2017

I'm sorry you are having a rough recovery!  My tumor was also under fat. It's part of the kidney make up from what I was told. Its hard to say cured. Cancer free is what I've said. In 6 months I hope to say my scans show I'm still cancer free. Everyday you will get a little better. Don't rush it. I'm 2.5 weeks post op. Going back to work onsite tomorrow for at least half a day.  Everything tires me. Not used to not being able to do things I did  up till surgery.  Try to remember we have had a major surgery and our bodies will take time and energy to heal. Good thoughts and prayers for your continued healing and that your pain lessens. 

 

Angie

Wehavenotimeatall
Posts: 489
Joined: Aug 2017

you are going back to work

Well that won't be me

but that will be a big step for you so good luck

pain is improving   

whilst I am happy to be here  at the  minute it will be great when I get home

Annie

 

 

Mary H.
Posts: 17
Joined: Sep 2017

Just wanted to weigh in on this.  I had a partial open nephrectomy in February, 2011. Have regular scans since then that show the surgeon got it all and there is nothing growing anywhere around the area. For some reason, just before I go in for scans, I start getting weird pains in my back, in the area of my kidneys.  I always think that it has returned. It hasn't, it's just my mind playing tricks on me, I guess.

Sending  you prayers and positive energy that your results are the same as mine.

lobbyist0724's picture
lobbyist0724
Posts: 417
Joined: Sep 2016

This happens to me too and I realized from others it is related to anxiety, in our case "Scanxiety". When I was diagonoised last year, I thought I was told that it's my right kidney has the tumor and got flank pain on the right side for days until I saw my speciliast who told me it is on the left side... I still have pain everytime days before my scan....

Wehavenotimeatall
Posts: 489
Joined: Aug 2017

Oh thank you

 

what size was your tumour?

 

Annie

Mary H.
Posts: 17
Joined: Sep 2017

I'm trying to remember the size of it.  I know they told me at the time.  I remember my husband and I talking about it.  But...since it's gone and hasn't been an issue apparently I put it out of my mind.  I know it wsn't very big.  The surgeon took about 1/4 of my kidney and got the tumor and clear margins.  Thinking about it...what's coming to me is 3-4  centimeters.

medic1971's picture
medic1971
Posts: 195
Joined: Sep 2015

Sorry you are having a such a hard time.  I hope you are feeling better by the time you are reading this. 

Angie1496's picture
Angie1496
Posts: 154
Joined: Sep 2017

Annie,

 

I know you will feel better to get home.  Have they said when you may get to go home?  I went in today and 3 hours in I was exhausted.  Came home to complete my workday teleworking.  I have teleworked since the monday after surgery.  I hope you are feeling better today!  Have you gotten any path reports or know how much of your kidney was removed? 

 

Angie

Rockspin
Posts: 77
Joined: Aug 2017

I had my total right kidney removed robotically on the 19th of Sept about 7 days ago. I am finding I'm tired and even walking exhausts me.  I am also having trouble eating and get full on very little in fact if I try to force myself to eat more I get nauseous. I did have weird pains on my left side before the operation but they're gone now.

Warrior2017
Posts: 3
Joined: Sep 2017

Sounds very familiar! I had my left kidney removed 8/22 for stage 1a renal cancer and although my digestive system has improved, I experienced the same thing. I could only eat small amounts and even liquids didn't go down well. At first I had nausea and vomiting because my bowels weren't moving hardly at all.  . My PCP put me on Prilosec (Rx not otc) about 2 wks ago and that was a tremendous help. I had laparoscopic surgery and she said I probably had reflux from all the gas. I  am still, 6wks post op, trying to get my bowel pattern back to normal. My PCP referred me to a gatriointerologist who I saw yesterday. Prior to surgery I had NO bowel problems (I was actually very healthy). Specialist said it's explained IBS due to the stress of the surgery. Body has been through so much stress the brain doesn't tell the gut what to do.  today I'm starting a new Rx Med to help my bowels (believe me I tried EVERY type of laxative) and will follow up in 3 months. 

As for being tired, ABSOLUTELY! Walk a little then rest. I felt the same exhaustion but do not overdo it or push yourself. You need to walk it slow and steady to build your stamina. I am still very tired-doc says (and I've read a lot) energy can be low 6mos to a year. So even though I'm so much better than i was, it doesn't take much for me to need a nap. REST as much as you can because your body needs it to heal! 

Im sure you habe a post op appt with your surgeon but call and tell him what's going on. If not resolved, call your PCP. the nausea and small amounts of food isn't "normal". Listen to your body, it's been through a lot but it's sending you a message. That's how I got here-my body sent me a message and I listened!  Good luck and feel better

Wehavenotimeatall
Posts: 489
Joined: Aug 2017

One hard week later home and feeling quite improved

Pain and soreness is under control

No complications  other than small chest infection so just need to rest

The exhuaustion is real climbing stairs to go to the toilet is not fun (this is Uk)

 

Report won't be ready for another three weeks or So but they are not expecting any surprises they said

 

Brilliant Surgeon said he only took less than 20% of kidney

 

Angie   How you doing

Optimistic Girl... how is hubby

The peace and quiet is bliss

 

 

 

 

Optimisticgirl's picture
Optimisticgirl
Posts: 82
Joined: Aug 2017

good to be home I bet (minus the treks upstairs).  80% of kidney left, fantastic! Keep moving and soon you will be back to normal physically. Please let us know results of report when in! 

Hubby keeps trekking along, doing pretty good most days. Walking is his biggest physical output and seems to keep progress rolling. Thank you for asking!

Angie1496's picture
Angie1496
Posts: 154
Joined: Sep 2017

Glad you are back home!  Hopefully each day feels better and better!  I don't know if I could have done stairs when I first got home but then again it is a necessity so... I am so happy they were able to save most of your kidney!  Soon you will be back to normal and waiting for your 6 month scans and a NED report!!

I have been running fever all week.  Finally broke sometime last night.  I chose not to go into the office today but rather work from home as I have been and will try going in on Monday.  If I come home with fever again I will know I have developed an allergy to that place! :)  Today is the first time I have felt like my old self!  I feel really good and almost normal. I may even try to put on jeans this weekend!  All I have worn since surgery has been dresses or stretchy pants! 

donna_lee's picture
donna_lee
Posts: 961
Joined: Feb 2009

You made it and now it's rcovery time.  Having just-2 days ago-gone thru the process of being prepped for a biopsy on the back of the right lobe of my lung, the warnings about pain and referred pain seemed to be way out of shape for three little needle biopsies.  That's what an additional swelling or insult inside your body can create.  Sort of like when the LARGE person takes the seat next to you on a plane (or anywhere, for that matter)...you get the overflow crowding you in the limited space.  You cry ouch on both situations.

Do take it slow and easy and allow your body to heal.  And that's an order from someone who's been there!!

Hugs,

donna_lee

Mary H.
Posts: 17
Joined: Sep 2017

Now you can rest and recuperate.  I know I felt a lot better with my house around me and the cat cuddling me.  I had a minor set back a couple of days after I got home.  While in the hospital, I ran a minor fever at times, was told that was normal.  When I was discharged, my husband told them I wasn't ready to go home.  He had the feeling something was wrong.  Two days later, fever was back and I started vomiting.  He took me to the ER where they did some tests and a CT scan (concerned about something wrong internally in the surgical area) and found that I had a UTI.  Put on antibiotics, came home.  By the next day, I felt fine and was so hungry I was about to argue with the cat for her bowl of food.  Had no trouble walking around, though I didn't have to deal with a lot of steps.  Since my surgery was during the winter, couldn't go outside to walk around much so walked a lot in the house and garage.  Basically, all I had to do was heal and I managed to do that without a lot of trouble. 

 

So...sending you healing prayers and good thoughts.  Continue to feel better and you'll be tackling the world before you know it. 

Wehavenotimeatall
Posts: 489
Joined: Aug 2017

Thank you  my girls  Optimistic. Angie Mary and the wonderful Donna

Two weeks post op and strength is getting better... still have an chest infection which is making things slightly harder but at least I can get through the day without collapsing several times (with exhaustion)

 

Bad news I don’t get to see Surgeon and get my results for another month which is six weeks after op

I understand they will check wounds etc at same time but six weeks seem unacceptable 

I have rang but I don’t think it will change anything

Does it change much if they give me bad news Anyway

Will I save myself four weeks planning the rest of my life 

Hate Hate Hate this whole thing

Sorry

Annie

 

 

Wehavenotimeatall
Posts: 489
Joined: Aug 2017

Dont get full pathology untill Nov 6th but wonderful surgeon Just rang to say pathology is 4 .4 ( not sure if that is just the tumour or not) chromophobe mass

 

He said more indolent

Just like to hear experiences and thoughts anyone esp on recurrence 

Many Thanks

Annie

Angie1496's picture
Angie1496
Posts: 154
Joined: Sep 2017

Its a small tumor... probably considered stage 1 based on the size.  yours is the same size as mine tumor.  Mine was Clear Cell.  While we have read enough to know that RCC isn't like other cancers... we have also read and been told that because we caught ours early we are in the best possible position we can be in considering we are cancer SURVIVORS!  Don't make yourself sick stressing about it.  Move forward and enjoy life!  Keep educating yourself on this disease and stay vigiliant but don't let it rule your life.  I know since August 2,2017 i spent hours upon hours focusing on, worrying about and letting this thing dominate my every thought.  Each passing day has been easier and easier for me to get on with life.  Stress can make you sick and we need to be the healthiest we can be moving forward.  Lets focus on that !!!  Hugs and kisses to you!  Wishing I could give you a big hug!!

stub1969's picture
stub1969
Posts: 864
Joined: Jul 2016

Hi, Annie

I had a partial in August 2016 to remove a mass that was just over 5 cm.  Pathology came back as Chromophobe RCC.  I've had two scans up to this point with another scheduled this December.  So far everything has come back NED.  Good luck!

Stub

no wishes's picture
no wishes
Posts: 2
Joined: Oct 2017

hi. as far as ı know kidney is a retroperitoneal organ so armpit lymphnodes may unrelated to kidney. dont listen your body too much and be relax and happy.

foroughsh's picture
foroughsh
Posts: 779
Joined: Oct 2014

Kidney tumors grow really slowly so if it wasn't spread in your recent ct scan then there's nothing to worry about for a while. I think the reason of this pain is your anxiety, so try to relax (i know it's easier said than done)

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