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Day 2 post-op

Glidergal365's picture
Glidergal365
Posts: 93
Joined: Feb 2018

 morning y'all. The doctor came today after a rough night. Finally got good pain relief and they made amazing heat packs which moved the gas out of my shoulder! When the doctor changed my dressing she let me know they got the path results and it was papillary RCC. She thinks it said stage 2. But I'll get the full path report in two weeks when I see my regular doctor. Not what I was hoping to hear. Mixed feelings at the moment. How did y'all cope with knowing it was cancer? 

icemantoo's picture
icemantoo
Posts: 3137
Joined: Jan 2010

Glidergal,

 

Unfortunately when it looks like Cancer and they make a decision to take it out, it usually is. That was my result almost 16 years ago. We are survivors so lets stay that way and not let a c word define us.

 

 

icemantoo

Glidergal365's picture
Glidergal365
Posts: 93
Joined: Feb 2018

 I was kinda expecting it to be. So I don't feel shocked. I am glad it's out and know a future of scans are coming. My grandma is a 20+ year breast cancer survivor and tough as nails. She's my hero :) it's just such an odd thing to say about myself. 

Brock1969
Posts: 80
Joined: Jan 2018

 

 

And I received so much advice from people on this board. Essnetially it boils down to you cannot change the fact you got it. You have done something about it. But now you CAN control how you move forward and with what frame of mind. I had same feelings...the "why me" blues. None of us has a time frame on this earth. You just never know. So, we can either spend the time worrying and hoping for a long life and when we get to the end realize that we didn't really "live" or we can just appreciate what we have. I sit her typing this with a gin and tonic, my wife by my side on the deack, dogs at feet, and sun shining. It's a good day. That attitude is an amalgamation of advice from about 10 people on this message board. Hope your recovery is going well. PLenty of short walks. Lots of exhale breaths to clear the lungs. Take it slow 

jazzgirl's picture
jazzgirl
Posts: 111
Joined: Nov 2017

Hi Gildergal, I knew it was cancer before going into surgery, from a biopsy I never want to have to repeat.  At that point I focused on the phrase I've seen so many times here:  "Get it out."  My diagnosis was out of the blue with no symptoms, so it took a long time to wrap my mind around it - still processing two years later.  If you are familiar with stages of grief, I think we also go through each of those when we hear the word (denial, anger, bargaining, depression, acceptance).  There's that persistent thought that, "this isn't real, this is a mistake," etc.  It has helped me to write about it and talk about it with those who "get it". 

I know little about papillary RCC but sounds like you are in good and competent hands and on the road to recovery from surgery.  I'm glad they are finding ways to address your pain.  Thinking of you as you heal and as you wait for the full report.  Take care -

JoeyZ's picture
JoeyZ
Posts: 186
Joined: Mar 2018

Hi Glidergal. I just had a kidney removed Mar. 8th with same kind of cancer. Stage II, Grade 3 on the path. report. I hope yours was better contained, mine was so big and spread. Didn't find it early enough. 

I understand your feelings totally, and have them myself. So as the others told me, we're in this together. I saw your other post before surgery and was wondering how you are, so I'm glad you were able to come tell us. Keep us posted. I guess yours and my type of cancer is more rare, so we can be buddies, I suppose! 

You take it easy. I felt a lot more at ease just getting it all out of me. At least I hope it's all out. Having a scan this next week to see. Take care & Happy Easter!!

Glidergal365's picture
Glidergal365
Posts: 93
Joined: Feb 2018

but I don't know the rest yet. It was at least 4.5x3.2 (from last CT). And it grew 1.5cm in 6 months when it was labled a Bosniak IIF. I think that's what makes it a stage 2. I'm curious if it's papillary type 1 or 2. Did you learn which yours is? I actually feel really good post surgery. Two different docs checked in on me post-op day 1 and 2 and couldn't believe how good I looked. That makes me happy :) except I'm reminding myself to take it slow and other than walking, not to do much. I did shower today and it was great. I hope you're recovering well! Let's stay in touch through this crazy journey! 

JoeyZ's picture
JoeyZ
Posts: 186
Joined: Mar 2018

Hi Jenn, Mine was a Papillary type 2, which I guess is the worst one. SO glad you're looking good and doing good! Never does a shower feel so good, right?!! Take care and keep us posted what more you find out. I'm still new to all this and have tons to learn!! 

Tapman63's picture
Tapman63
Posts: 132
Joined: Dec 2017

From everything I've read and heard any kidney mass has at least an 80-90% chance of being cancerous.  Pre-surgery, I went with the idea that it was cancer and would be very happy if it turned out otherwise.  For me it happened kind of quickly, so today...six weeks after my surgery...i'm still trying to wrap my head around the fact that I actually DID have cancer and that it's (hopefully) behind me now.  Look at it like that - you had it....you got it out...you're going to have a long, healthy life.  

Best wishes and Happy Easter!

Jim

jomoore60
Posts: 6
Joined: Mar 2018

I really hope this goes well for you..I'm only at the stage of getting results from MRI, hopefully Tueday. Prayers

gunswork
Posts: 3
Joined: Mar 2018

Best thing you can do is get up and walk as much as you can to speed up your recovery and manage the pain. Walking helps get rid of the gas in your jounts and will get you home faster. But listen to your body and when you need a break or rest listen! Do the same when you get home. Do not become a couch potato or over do it either. Sleep and activity in balance is the way to go. It also helps manage any depression and helps put your cancer worries out of the forefront of your mind. Live each day and enjoy it and keep moving. Focus on recovery and getting better.

Glidergal365's picture
Glidergal365
Posts: 93
Joined: Feb 2018

 the CO2 was literally the worst thing EVER. They had to give me morphine and Oxycodone to get it to calm down. My pain was not well controlled first day. Second day I advocated for myself and they fixed it. I finally got some sleep. And heat packs on my shoulder helped knock the gas down. The incision doesn't hurt too bad. A little itchy. I'm super impressed with the surgeon and staff at the hospital. I'm on a low dose of Oxycodone now (5mg) every 4 hours and tomorrow plan on transitioning to Tylenol. Since my spring class just started I'm happy I can keep my brain engaged. I'm planning on staying out of work 4 weeks regardless, otherwise I'll do too much. That is going to be the struggle!!

Bay Area Guy's picture
Bay Area Guy
Posts: 354
Joined: Jun 2016

I think we all went through the same feelings as you are having.  I know I did.  Mine was small and turned out to be chromophobe RCC, stage 1.  And even though you're prepared for the news, hearing the doctor say, "Well, it was, in fact, malignant", still makes your heart stop.  We've been conditioned all of our lives that a diagnosis of cancer is a death sentence.  But with the amazing progress that's been made in the last five to ten years, while cancer is certainly something you don't want to get, it's not quite as fearsome as it once was.  In 2009, we got a call from my brother-in-law, asking us if we could go to a doctor's appointment with him the next day.  We only knew that he had been having some nosebleeds and was generally run down.  We got the news that he had something called nasopharyngeal carcinoma, a cancer of that's in the back of the nose and throat.  We were shocked and we panicked when we heard the doctor describe it as stage 4A.  We spent the next four months with him pretty much every day as he had to have a daily dose of targeted radiation and once a month he had to undergo chemo.  He was blessed to have been referred to doctors at UCSF, one of the leading cancer hospitals and clinics in the US and I believe the top one in the Bay Area.  Four months later, when his treatment regimen was over, the tumor had been completely eliminated and now, eight years later, scans continue to show him cancer-free.  And remember, this was staged at 4A.

I've been reading about an injection that was developed at Stanford University, just the down the Peninsula from me, and where I went to get my kidney lesion analyzed and ultimately removed.  The injection was developed by the same doctor that developed the chemotherpy treatment called rituximab (believe that's the spelling), that greatly improved the effectiveness of chemo on many types of cancers and reduced the often uncomfortable side effects of the treatment.  This injection helps to kick start the body's own immune system into fighting certain types of cancer cells.  It had a 97% success rate on labratory mice and is now moving into human trials.  It's very exiciting stuff.

I'm 62 years old.  And I firmly believe that, within my lifetime, cancer is going to move from being a disease that has been feared and dreaded, to being one that is curable or, at worst, is contrable much like HIV/AIDS is today.  Big Pharma rightfully earns the wrath of many, myself included, for over-peddling opiates and anti-depressants, along with endless supplies of ED drugs, but for all they do wrong, they have developed some amazing drug treatments.

Canadian Sandy's picture
Canadian Sandy
Posts: 441
Joined: Jul 2016

I was not surprised to have cancer. It was a complex cyst, part cyst and part mass. The pain after totally caught me off guard. I had colon surgery couple of years ago and very little pain. Open nephrectomy is what hurts.

i didn’t suffer from any gas pains which was nice. 

Mighty Frog's picture
Mighty Frog
Posts: 116
Joined: Jul 2017

Hi! Great!you have successful operation. Wish you speedy recovery. 

On how to cope? Is a tough one, i struggled 6 months to puzzled back on my life. Well we all do have good days and bad days

First of all, need to get over "Why Me? Queston!

then the next question " What to eat?" This question need to be answer everyday and 3 times a day. Solution to this question, choose a diet that suit you. And a new lifestyle as things are not going to the same anymore. Need to be strong to adapt to this new environment. 

Keep you mind focus on recovering and planning for this new life. 

Once you have get everyhing in order and organised then this new life is more better to handle. 

Get more rest as possible. 

 

 

 

kiwi68's picture
kiwi68
Posts: 108
Joined: Oct 2017

Glad to hear you are sounding very upbeat and making forward progress on recovery.  Go You.  Now - slow down.  Seriously, just take it easy, I know you have plans to.  Remind yourself. Unless you are in a burning building, it can probably wait.   As will your results and next steps.  Try to compartmentalise the worry about future steps.  Focus on your post operative recovery, pooping, sleeping, wound care, take advantage of the friends and family that will be your supportors and champions, enage with them, let them know what they can do to help and let them know how you feel if you think they would like to share in that with you.   This board can be a great place to write/vent/question without judgement and without upsetting family and friends if you want to avoid that.   Live in the moment for the moment, nothing is going to change the pathology and the next steps that you will find out about in a few weeks so try very very hard not to think about it yet would be my advice.   I was very glad I did that, my result was non cancerous, and I did reflect that either way I would have felt some resentment at time lost to worrying if I had spent much time on it before I got the pathology. 

Now, have a warm drink and keep your feet up - keep with the deep breathing and walking.   

medic1971's picture
medic1971
Posts: 189
Joined: Sep 2015

Yeah I am right there with you, that gas pain is awful.  

You posted this: " It was at least 4.5x3.2 (from last CT). And it grew 1.5cm in 6 months when it was labeled a Bosniak IIF. I think that's what makes it a stage 2." 

That does not sound right to me.  T1 or stage 1: The tumor is found only in the kidney and is 7 cm or smaller at its largest area. There has been much discussion among doctors about whether this classification should only include a tumor that is 5 cm or smaller.

The Bosniak classification system of renal cystic masses divides renal cystic masses into five categories based on imaging characteristics on contrast-enhanced CT. It is helpful in predicting a risk of malignancy and suggesting either follow up or treatment.  This is NOT used for staging.

 

Do you think she could have said grade 2 or type 2? 

 

Good luck that gas pain should be almost gone by now!

Glidergal365's picture
Glidergal365
Posts: 93
Joined: Feb 2018

i was still on oxycodone when I responded LOL..

I called my surgeon to ask and it is papillary RCC type 2 stage 1. I'll get the rest of the info next Thursday at post op :) at this point I'm happy I had clear margins. I'm curious how big it actually was when they pulled it out considering the growth rate and it was almost 2 months between scan and surgery. 

That gas pain though... 

AnnissaP's picture
AnnissaP
Posts: 609
Joined: Sep 2017

It is so strange when they actually confirm it WAS cancer. Even though we know all along it probably is..we still hold out hope right? It is still shocking to hear. Thank god they got it out. Def take it easy and allow yourself to heal. Time is your best friend.

hardo718's picture
hardo718
Posts: 853
Joined: Jan 2016

Hoping your recovery goes well.  Coping with the diagnosis for me was like being hit by a truck.  That couldn't be, not me, why me and a myriad of other crazy thoughts I suppose.  Give yourself time to get over the shock.  It's a process.  Some of my thoughts after a little adjustment included, thank God that F***** is out of me and other not so nice thoughts about cancer.  I named the beast that grew within so I could refer to it in those moments.  (Bob the Blob)  

Best wishes on your road to recovery,

Donna~

 

Glidergal365's picture
Glidergal365
Posts: 93
Joined: Feb 2018

My boyfriend name my odd shaped kidney Fred so we called my tumor Wilma :)

Glidergal365's picture
Glidergal365
Posts: 93
Joined: Feb 2018

 For the most part my recovery has been going exceptionally well, however I noticed Friday a spot not healing in the bigger scar (I had a hand assist ) and went in to the clinic where one of the internal stitches (the knot) had poked through. He pulled it out and clipped it. Since then the whole thing has itched and now I have what feels like sunburn below the bellybutton (about a 5 inch area to the left of my large incision).I called the on call Dr and will see them tomorrow, he thinks it's a nerve reaction. Has anyone else experienced this? My incision doesn't look Infected, no fever etc.. its so annoying and when I walk anything that touches feels awful :(

steelr66's picture
steelr66
Posts: 23
Joined: Mar 2018

Right there with you. I'm sure the neighbors think i'm pregnant because i walk up and down the sidewalk holding my shirt pulled out in front of me Cool

Glidergal365's picture
Glidergal365
Posts: 93
Joined: Feb 2018

That image made me giggle. Thanks. I am glad to know it's "normal", well, my new normal I guess. Any day now I'd like it to go away :( 

Amy_Jo's picture
Amy_Jo
Posts: 69
Joined: Apr 2018

I was sick with flu and ended up in the emergency department. Few hours later I was diagnosed with RCC. I had a large mass in my left kidney. I just remember the ER physician saying it's contained to your kidney she had scan my chest as well it was all clear. I know her intention were of giving me hope. I was alone scared and devastated. I have four children 2,5,13,16. I'm 39 years old. Two weeks later I had my left kidney removed. My mass was stage III and my pathology was stage 4. It's been almost 5 weeks since I had surgery - my surgery was converted to full open I had to have 2 pints of blood. I'm still really sore I have one small section of my incision that opened up it's scab over now butt still painfull. 3 weeks after surgery I went in to let my surgeon check my incision I mentioned pain in my left shoulder and neck. He ordered a scan of my chest I have two blood clots in my lung. I'm now on xarelto. I feel exhausted and sad. My husband is growing impatient with me. He feels I should be doing more. I'm terrified. My pathology report said the margins were all clear. Anyone else struggling with this? My surgeon said it may take up to two months to feel human again. 

JoeyZ's picture
JoeyZ
Posts: 186
Joined: Mar 2018

AmyJo: I'm sorry to hear you're having such a hard time of it. Your husband needs some educating on just what you have gone through. Maybe through this forum or your doctor. I am a month post-surgery, my cancer had spread and I had a 10 hour surgery and all my blood replaced. Of course I'm much older, at 63, but this is not easy at any age. I hope you can get through to him. The last thing you need is his being impatient and forcing at you to do more. My Doctors offered counseling if we needed it. Sometimes I think we do and other times, think we're ok. So don't hesitate on that one, too. It's not easy! First and foremost, you have to have the proper after care and NOT do too much too soon!!

I am very worried about you! Please keep in touch.

Amy_Jo's picture
Amy_Jo
Posts: 69
Joined: Apr 2018

Thank you for your response. I'm trying not to push myself to hard. I explained to my husband that I am trying butt my body needs time. We have a two year old daughter so it makes things difficult because my surgeon said not to lift over 10 pounds. My husband is use to me doing everything. I was so sick prior to my surgery that I was in bed for 3 weeks prior. I'm about to hit the 5 weeks since my surgery. I continue to have soreness I'm moving around ok however bending just to put shoes on can be a chore. I had a 2 week follow up after surgery and then my surgeon said see you in 6 months for a scan. I feel like I am walking blindly through this. I have worked in healthcare for 13 years - I'm taking good care of my insicion and emotionally I'm ok. I'm sure being on blood thinner isn't helping with my energy level either. Wow your surgery sounds like it was brutal. Was your surgeon able to remove your cancer? My surgery was March 8 my surgeon said my cancer was nasty and it may take my body 2 months to reajust. 

Glidergal365's picture
Glidergal365
Posts: 93
Joined: Feb 2018

I'm so sorry to hear about your struggles. I've been so lucky to have a supportive boyfriend. We don't live together but he has been to see me daily, help me grocery shop, run me to Dr appointments etc. I'm thankful my kiddos are older (10, 15 and 18) and are able to help me. My ten-year-old has felt really special to help mom while I'm unable to do anything. I work in healthcare too, have for years. I'm a Community Health Worker. This experience will change the way I work with people even more. If you have facebook there are a few really great support groups on there as well for Kidney Cancer. It has helped me to read people's stories and tips. Feel free to reach out if you just want to talk! 

Jenn

JoeyZ's picture
JoeyZ
Posts: 186
Joined: Mar 2018

We had surgery the same day, March 8th! I do hope you're feeling better. I do know it's harder for "normal" people and I hope you can get through to him. Take it easy.

We don't know yet if they got all the cancer out. We hope so, but I will find out the results of my post-op CT Scan on Tuesday the 17th. Two days from now. I'm on week two of Cabo so if any is left in there, I hope it's killing it off!!

I worked very near to the healthcare field for 10 years. It was a great experience.

Take it easy.

Amy_Jo's picture
Amy_Jo
Posts: 69
Joined: Apr 2018

I hope you are doing well. I just reported to the emergency department due to severe back pain to find out my cancer has spread to my liver and spine. ImI being transferred to a larger facility to meet with oncologist to see what the plan is. I'm so frustrated because I was feeling so much better and I thought I was getting back to my life. Hoping this is a bump in the road and not the end of it. 

Steph85's picture
Steph85
Posts: 152
Joined: Feb 2018

I'm 32 with a 2 yr old and 5 yr old. I thought I had gallstones just to find out I had RCC. I was extremely lucky that my mother in law came to help. My husband did a little, but I'm the stay at home mom. My 2 yr old just wanted to jump and crawl on me and it was sooo hard. I to had a open nephrectomy. I'm 3 months post op today and feel a whole lot better. By 2 months I was feeling more "human" again. Still fatigued though. I'm now able to excercise and doing some abdomimal exercises.  I'm always a little sore around my incision site. Anyway, I can absolutely relate. If you need someone to talk to or vent to you can message me. Your husband should understand what you went through was major surgery and you know... Had cancer!! Don't push yourself too hard because it can delay your recovery. You need to take care of yourself first. The rest can waite. Hope your doing better, take care!

Stephanie

Amy_Jo's picture
Amy_Jo
Posts: 69
Joined: Apr 2018

My cancer has spread to my liver and spine I'm waiting to be transferred to a larger facility to meet with oncologist. 

Angiebby75's picture
Angiebby75
Posts: 174
Joined: Aug 2017

I have nerve issue since my surgery 5 months ago. Its has been getting a little better. Wishing you a speedy recover. 

hardo718's picture
hardo718
Posts: 853
Joined: Jan 2016

Love it, that's a good one!  haha

That nerve pain isn't unusual, think of all those nerves they cut on the way in.  They're pissed off and trying to heal and reconnect.  In time it does go away.

Patience,

Donna~

Gtngbtr58 @aol.com's picture
Gtngbtr58 @aol.com
Posts: 199
Joined: Oct 2017

Sorry to hear about your situation.  Please be patient with yourself and accept whatever help you can get. Maybe you should explain to your husband that the next few weeks are going to be hard and you need all the support and help you can get from him.

 Take it slow and easy-you'll feel a little better each day.  Good luck!

Amy_Jo's picture
Amy_Jo
Posts: 69
Joined: Apr 2018

I'm trying to be patient with my recovery however with a two year old and bills building up it's crucial that I get back to work sooner than later. I hope to return to work in two weeks. Its difficult because my body just wants to sleep. I know my husband means well. He has been holding down the fort over 8 weeks now I'm sure he is just frustrated. He is working grocery shopping cleaning house doing laundry and tending to our toddler most of the time. 

Glidergal365's picture
Glidergal365
Posts: 93
Joined: Feb 2018

Hi Amy Jo, just wanted to check in and see how you're feeling. Hope it's getting better as time passes. 

 

Jenn

Amy_Jo's picture
Amy_Jo
Posts: 69
Joined: Apr 2018

Unfortunately I'm not doing to well. I had back pain for a week after seeing my family doctor and no releif I went to the emergency department. My cancer has spread to my spine and liver. I'm being transferred to a larger facility to meet with oncologist in the morning. 

Glidergal365's picture
Glidergal365
Posts: 93
Joined: Feb 2018

I'm so sorry to hear about what's happening. Sending good thoughts your way. Let me know if there's any way I can support you. We are here to listen! 

 

stub1969's picture
stub1969
Posts: 734
Joined: Jul 2016

Sorry to hear about this turn-of-events, Amy.  I'm hopeful that your new oncologist will develop a plan so you find relief.  Although we are here to support you, I'd also encourage you to reach out to the smartpatients website.  Many of the members there are stage 4.  You'll gain a lot of knowledge and support there.

Take care,

Stub

Retcenturion's picture
Retcenturion
Posts: 239
Joined: Mar 2017

Hoping you get better news at the larger facility. You might consider opening a Post for your treatment for us to follow. Sending positive thoughts for you and your famiily

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