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59tigger2
Posts: 1
Joined: Mar 2019

Hi! I am so glad to find this group! I went to the ER the end of February with a suspected kidney stone. The CT scan showed a 1.6 cm mass on the top of my right kidney. A follow up scan and and MRI confirmed the mass, and an additional mass on the lower left part of my kidney (which isn't quite as suspicious as the top mass). My urologist and I had decided on cryoablation, but the doctor he referred me to doesn't do that procedure and I'm waiting to hear from his partner. I'm beginning to think that having robotic assisted surgery may be my best option. I have so many quesitons and so much fear! I'm trying to educate myself as much as possible, and I'm glad to find a group of caring people who've been on this journey. Did any of your suffer from extreme fatigue before surgery? I have been exhausted and I don't know if it's physical or mental. I teach kindergarten, so I'm used to being on my feet and busy all day, but it seems like all I can do to make it through the day. Also, I have no appetite whatsoever. Not a bad problem, as I need to lose weight. I had gastric sleeve surgery in 2015 so I try to eat a high protein/low carb diet, but most proteins don't seem to agree with me. My other big question- how long was it befoe you went back to work? One of the reasons I was in favor of the cryoablation was the quicker recovery time. Thank you all so much - I'm looking forward to getting to know everyone!

Karen

icemantoo's picture
icemantoo
Posts: 3211
Joined: Jan 2010

59tigger2,

First whatever they do, it (they) are small and a full and complte recovery is in the cards. Give some thought to addressing both masses at once and having the surgery at the begining of your Summer Vacation as it can easily take a few months off to be a full time kindegarten teacher.They took my whole kidney at age 59 almost 17 years ago. I was a slow normal at about 6 weeks and went water-skiing at 11 months.

We all felt down in the dumps and scared in the begining. That too shall pass.

 

 

 

icemantoo

stub1969's picture
stub1969
Posts: 792
Joined: Jul 2016

I'm so glad you found us!!  I remember vividly the feelings you are experiencing.  My tumor was a little over 5 cm and was on the lower pole of my right kidney.  I had a robotic partial, which made recovery a bit easier than an open procedure.  Let me go through your post let me give you my opinion (based on my exerience) for the questions you bring up.

1.) Your doctor---no matter the size of the tumor,  I suggest locating a doctor experienced with RCC.  Do some research on your doctor.  See if he/she is published.  If all else fails, ask them.  I was diagosed by my local nephrologist and he referred me to a urologist in our small local hospital.  While I was waiting for a return call (waiting is not a strong suit of mine) I contacted the Mayo Clinic in Rochester.  I heard back from them the next work day and met with the surgeon within a week or two.  My surgery was scheduled within the month.  My surgeon deals with RCC a lot and is very experienced in the robotic procedure.

2.)Fatigue---Prior to being diagnosed, I could tell something just wasn't right with my health.  I was training for a half marathon and recovery from my long runs took longer than usual.  Looking back there were other clues that I blew off as part of my training.  The point is...fatigue certainly can be a symptom of your tumor.  I also want to stress to you that you are going to have to learn to wrestle with the mental side of this diagnosis.  Everybody has different coping skills--you'll have to find what works for you.

3.) Appitite---Yep, I had this too.  I hadn't realized how much this lack of appitite had effected me until I was weighed in the doctor's office.  (I rarely weigh myself, so I actually had no clue what I weighed, but I had an idea) . When they weighed me I was 10-15 pounds lighter than my projected weight.  I actually had the nurse get a different scale, because I thought the one they initially used was broke.  The second one confirmed the weight.

4.) Back to work---There are a lot of factors that go into this.  As I mentioned, the type of surgery you have has a big part in recovery time.  Pre-operation health is also a huge factor in recovery.  Other factors include (but are not limited to) age, and any complications you may experience during surgery or in recovery.  I'm also and educator (I'm an elementary principal), so I understand the demands you face as a kindergarten teacher.  One of the most important things I can tell you is to listen to your body.  It will let you know when you are ready.

As part of this diagnosis, comes the need to search for answers.  Please, do not turn to google.  The research is getting better, but much of the information is out of date and based on data that is over a decade old. Your fear and anxiety is real.  Searching google will (at least it did for me) compound these feelings.  We've all experienced what your are going through and we're all willing to help you. 

Blessings,

Stub  

eug91's picture
eug91
Posts: 142
Joined: Jan 2019

Sorry you had to join us, but this is a great message board group here. They really helped me through when I was diagnosed. We've all been where you are, so feel free to ask us questions or just vent. You're not alone and we're with you. 

For most of us, finding a tumor meant a partial or radical nephrectomy. Echoing what the others have said above, check with your doctor and if he/she is experienced with RCC. Since your tumor is on the small side, you have options available - as long as you trust your doctor and their experience. 

As for fatigue, yes, I lost a bunch of weight between my diagnosis and my nephrectomy because I was nervous and it messed with my appetite. 

As for getting back to work, my freelance desk job is nowhere near as demanding and on my feet as a kindergarten teacher, so I don't know how much I can help. But it took about a week recovery before I was strong enough to sit at a desk for half-days, and those were exhausting. Stub mentioned the other factors. 

Let us know if you have questions. You've got this!

Bay Area Guy's picture
Bay Area Guy
Posts: 385
Joined: Jun 2016

Hi Karen.  My little visitor was 1.7cm.  The urologic oncologist I had said it could be taken care of th4ough cryogenic or through a robotic partial.  The percentages he quoted were that cryogenic was in the 90% to 95% effective range where surgery was in th3 99% range.  He recommended th3 surgery based on my age (60 at the time of surgery) and overall excellent health.  I agreed, mainly because with surgery, you know it’s out whereas with cryogenic, you’re pretty certain it’s out, but not as sure.  Plus, the dead cells are kind of just sitting there for a while before eventually getting flushed out and I didn’t like that.

Whatever you decide, at 1.6cm, you have an excellent prognosis for a complete elimination of the RCC.

Retcenturion's picture
Retcenturion
Posts: 240
Joined: Mar 2017

Hi Karen.. Again welcome. I read your Post exactly 2 years to the day I was diagnosed.We have all been where you are now. The above Posts are spot on advise. I wasn't tired before the diagnosis nor any pain. Whatever course you and your medical team choose start planning for Post Op. Go back over recent Posts on what others have gone through. Research what is going to be done and then stay away from the Net. Its often not accurate. Line up friends and family for meals, walks outside, and general mundane house chores. Any questions come up ask, it will probably answered quickly. Sending positive thoughts your way.

jroco's picture
jroco
Posts: 20
Joined: Mar 2019

My tumors at 1.5 cm.  I went down the path of cryoablation but  the radiologist said he couldn't guarantee getting an accurate biopsy while doing the procedure. This because tumor so small. For me mentally I have to know for sure what Tommy tumor is so I can move on in life. Partial nephroctomy was clear choice for me

jroco's picture
jroco
Posts: 20
Joined: Mar 2019

Karen just know that you and I are lucky we can make this choice because the tumor is so small. You will probably find the doctors are in no hurry in our situation.  It took me 8 months to make my decision. Mine started at 1.3 CM and follow up CT was 1.5 CM before I made my choice 

APny's picture
APny
Posts: 1937
Joined: Mar 2014

So sorry you have to be here, Karen. Totally understand the fear and anxiety. That was worse for me than the surgery. My urologic oncolgist said ablation is typically reserved for the elderly who are not in great shape/health for surgery. So I too opted for partial nephrectomy. You're surer it's gone and you get a pathology report which is not possible with ablation. Mine was an open procedure yet I was home 2 days later and doing work at my computer (home) 3 days later. Not going to say it was a breeze but nowhere near as bad as I had feared. I think scheduling for early summer is a great idea so you have recovery time. Teaching kindergarden must be exhausting! I would definitely not be looking forward to work too soon after surgery. All the best to you!

LanceHeal's picture
LanceHeal
Posts: 57
Joined: Mar 2019

Karen,

i think we are both newbies. Similar story here. ER visit with a CT scan.  I left with 1 less appendix  and 1 new 2.5 cm friend I never knew I had.

7 days later and a Urologist confirmed that my little friend is most likely cancerous (with a 90% probability).

listen to everyone who tells you that Doc Google is not your friend.  I made that mistake this weekend and am slightly freaking out. Luckily I have an appointment with my PCP tomorrow to get started on a long term plan so I’m sure I’ll feel better after that. 

In my case they chose “active surveillance“. I am struggling with this choice and plan to seek a second opinion. 

In terms of fatigue, I am experiencing it.  Maybe not extreme but certainly noticeable.  I am wondering though if it is more from my appendectomy than anything, however I recall feeling general lack of every and motivation from normal levels starting several months ago  

i also fear the career impact as well.  There’s not much I can do about it though and i Am trying to save my energy for the things I can impact.

hang in there. You are not alone and you can fight this!  I’ll be by your side doing the same. 

JerzyGrrl's picture
JerzyGrrl
Posts: 760
Joined: Jun 2016

Stress is never simply physical OR mental. It gets all of you, physically and mentally in all sorts of sneaky ways, tosses in a big dose of fatigue, adds a pinch of exhaustion, and lets anxiety bite you in the butt. And all this time, we try to tell ourselves it's no biggie, we're active, we've just got a diagnosis, but it's not a done deal, etc. Right. 

Many of us felt things were "off" before our diagnosis of our kidney blobs. Then we got the news, and gracious! You don't realize how much momentum you're operating on in your daily life until you hear the C-word. 

So, fatigue is normal. Whatever your symptoms are at this point are probably normal, since there's a big range. Just be sure to remember to cut yourself some slack while you're going through this stuff. Even if it turns out to be "no biggie" (and people buy lottery tickets all the time with worse odds, so it's certainly possible), you still need to cut yourself some slack. 

Oh, and keep us posted. That's what we're here for. 

Manufred's picture
Manufred
Posts: 239
Joined: May 2017

Surgery is a major experience, and your rate of recovery will depend on your own situation.  Be as fit and healthy as you can be before, and allow yourself lots of rest after.  Stress won't help, but hard to avoid at a time like this.  Try to remain confident and positive; others have gone through this and came out OK.

I would think four weeks before going back to work at least, more if it involves strenous physical activity.  Let your body tell you and don't push yourself too hard.  Enjoy the excuse for having lots of naps.

Best Wishes, Fred

HLee
Posts: 13
Joined: May 2018

Fatigue was very real before my tumor was found and removed. The fqtigue was due to my anemia.  Fatugue is very real now with the treatments.

citizenklaw
Posts: 41
Joined: Mar 2019

10cm. T2a. Luckily it was found 'early' and removed. Have the scar to prove it and I'm recovering two weeks after. My body's still adjusting to this new reality. Started working this week, but I'm pacing myself as much as I can. I work in IT, so I'm sedentary. Something I tried to avoid before the surgery, and now. I pace around my office and do long walks when my Fitbit tells me to. BTW, I've found the fitness tracker to be invaluable in recovery. Not only for exercise, but for sleeping too. I hit a mid day slump, depending on lunch (which I'm trying to curb) and I'm sleeping a lot each night.

My surgery happened relatively quickly (three days between finding it and the surgery) so I didn't have a whole lot of time to be anxious. What drove me, though, is the realization that a.) I'm going to beat this b.) I'm going to take better care of myself going forward and c.) trust the science. Being anxious is normal, I suppose. Just focus on the next you and rely on your support network (your family, friends, and here!) I checked in here while I was recovering and it lifted me up.

You got this.

Deanie0916
Posts: 241
Joined: Nov 2016

Welcome wish you didn't have to seek out this advice but you're in a good place to receive lots of good support and encouragement. Hang in there, my thoughts and prayers are with you.

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