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Lexleigh3
Posts: 12
Joined: Apr 2019

Hi!  I need some advice from those who have "been there".  In 2017 during a ct scan for something else they found a tumor on my left kidney (on the bottom).  At that time is was 0.5 x 0.6 x 0.5 cm.  I was placed on active surveillance with alternating u/s and ct scans every six months.  My last ct was the end of October 2018 and the tumor had not grown. Two weeks ago I had an u/s which showed the tumor had increased in size to 1.3 x 1.2 x 1.2 cm.  I am scheduled for another ct scan tomorrow. The tumor, to me , has seemed to increased a lot in a short time (less than 5 mos)--is this significant from your all's experience? Also,  I see the doc in another two weeks to have a "discussion". From previous discussions with my urologist I understand that my options were --active surveillance until it grows--which from what I am told these are slow growing tumors with a low risk of spreading--then comes a partial nephrectomy (devinci method I believe?) , or I was also told it can be frozen, but I am only 52 so the freezing would mean a lot of ct scans for the rest of my life and that may not be a good option?

Ok--my next questions related to the above is--recovery?  I am active and we have a couple of vacations planned and paid for. How long till I can do things (approx)--I like to excercise including some light weights, biking etc.  Also another main concern is that I have an adult child who is disabled.  She is ambulatory but still needs to be dressed, bathed and also wears diapers.  Finding help will be difficult so I would need to search early and figure out about how long I would need the assistance.

I appreciate any suggestions and advice based on your all's experiences and understand that while you cannot give me actual medical advice, you can offer me invaluable advice from someone who has been there, which is something my doc can not give me.

Thank you! 

icemantoo's picture
icemantoo
Posts: 3144
Joined: Jan 2010

Lex,

 

 

It is still very small and there is no one right or wrong answer as to when they should take it out. It is major surgery so there will be down time which varies from person to person.  At 59 I was back to a slow normal in about 6 weeks. Others have had different recoveries. Tje first week or two are very hard, Allow yourself time to recover.

 

 

 

icemantoo

Lexleigh3
Posts: 12
Joined: Apr 2019

Thank you!

a_oaklee
Posts: 408
Joined: Nov 2013

An average rate for tumor growth is half a centimeter a year.  That's the statistics on average.  If yours was .5 cm in 2017, and it's now 2019, I'm not sure how you are calculating growth.  It doesnt sound like it is going crazy growing.  You are having a CT to get a better look at it, and to compare CT to CT.  I wouldnt compare an ultrasound to a CT.  

The best news is that you found it very very early.  Lucky you.  It's also fantastic that the location is at the bottom of the kidney.  So much better than a central location. 

You are doing everything right.  The best advice will be from your doctor.  My guess is that you have time for your vacations and to definetly line up help at home.  Ask the doctor how long it would be before you can lift.  My guess is that its 2 months.  You will feel pretty good at 2 weeks, even better at 1 month, but not ready yet for taking care of your family.

Lexleigh3
Posts: 12
Joined: Apr 2019

Thank you for your response, it is helpful.  The tumor actually has only increased in size the past 5 months, no growth was detected prior to that, so this is what concerns me.  I am hoping that they did not measure correctly, however this is maybe too optimistic :)

stub1969's picture
stub1969
Posts: 738
Joined: Jul 2016

The watch and wait approach worked.  Now that there has been growth I hope the conversation with your doctor does lean more towards taking it out.  There are several members that had tumors the size you have and had it removed.

A lot of factors do go into recovery.  This is a major surgery and should be taken seriously.  I had a partial using the Da Vinci method and recovery was fairly quick.  You will need support for the first couple weeks especially if you have to lift your daughter.

Hope this helps.

Stub

Lexleigh3
Posts: 12
Joined: Apr 2019

Thank you for your response!  What was it like with the da vinci method?  When was it and how are you now?  Frequent follow up visits?  (sorry for all the questions)

PS . I just figured out how to read the backgroung bio.  Best to you, it seems as though it has been a rough road and sounds like you are doing well.

Bay Area Guy's picture
Bay Area Guy
Posts: 367
Joined: Jun 2016

Hi Lex.  I was in your position a few years ago.  I had a small lesion on my right kidney that was discovered in late 2013.  It wasn't until April, 2016 that an u/s disclosed some growth, so it came out in June, 2016.  It was a partial robotic.  To try and answer some of your questions:

Mine was originally pegged at 1.5cm.  It supposed "grew" to 1.8cm in the 2-1/2 years of surveillance, but that "growth was between a CT scan and an u/s.  When it was removed, the actual size was 1.7cm.  Despite the fact that the technology is able to measure these things down to the millimeter, it's still just as much art as science in terms of the number they come up with.  Differences in the type of machine (u/s versus CT), the tech doing the scan and the radiologist reading the scan all can contribute to differences in the measurements.  Still, your growth grew, so it should come out.

In terms of surgery versus freezing, I was offered both, but the urologic oncolist strongly recommended the surgery, even though he performed ablations and did not perform surgery.  Ablations are typically recommended for people that are surgical risks.  The success rate in ablations (at least in 2016 when I was making my decision) was about 90%.  At the same time, surgeries for lesions my size had a success rate of 99%+.  In 2019, I would assume the success rate for ablations would likely be a little higher, but not to the level of the surgery.

Since you seem to be in pretty good physical condition, I would think your recovery from the robotic surgery would be faster than most.  Ice's post was that he was back to a slow normal in about six weeks, but remember, he had an open surgery, not robotic.  That does make a difference.  I had robotic surgery and I was back to a slow normal in about three weeks and I think I was back to lifting weights and doing crunches (albeit more lightly for a while) in about six weeks.  The key, as many people have pointed out in other posts, is to listen to what your body tells you in terms of how fast or slow to take things.  I took things pretty slow, just to be safe, and it seemed to have worked out ok so far.

Being a lot less invasive, the ablation technique would have a much shorter recovery period.  My main issue was that I figured that getting the tissue out of my body, even though it would be dead tissue after the ablation, would be a better thing than letting it sit in there while my body gradually eliminated it.  I don't know if that's what actually happens and how fast or slow it might occur, but that was my thought process (assuming one can trust my thought process).  The main reason for you to consider it would be if you don't think you can get the care neded for your adult child.

Whatever you decide, the one thing you'll know is that with a growth of your size, there is an excellent chance that the procedure you undertake will completely take care of the cancer with the only followup care being periodic CT and/or u/s.

Lexleigh3
Posts: 12
Joined: Apr 2019

Thank you for answering all my questions. Having an idea of what to expect is half the battle. I am very glad I found you all, I have found it helpful reading your experiences. Thanks again for the support.

Allochka's picture
Allochka
Posts: 834
Joined: Nov 2014

Hi, Oaklee is right, no sense to compare US to CT. You should only compare CT to CT. And about freezing - less invasive, yes, but there will be no chance to get a full pathology report after that, if I’m not mistaken. I would definitely want to know what I’m dealing with, so I would take surgery anytime :-) 

Good luck, you are VERY lucky to discover it so early!

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

Your in the right spot for your questions. You will be able to make your decisions with the information you get and can consult with your medical team. Also, there is the option of 2nd opinion if you are not sure. I had no choice left kidney had to go. From other posters and myself expect a few weeks to recover. A procedure is both physical and mentally draining. Sending positive thoughts for you and your loved ones.

APny's picture
APny
Posts: 1873
Joined: Mar 2014

I too was told that ablation is for much older people and/or for those who could not physically tolerate surgery. The "gold standard" is surgery. I had open partial surgery and was up walking the same day, and home on the third day. While not fun, it was not nearly as bad as I had feared. If it's true that lap/robotic is even easier, then you should be even better off than I was. I was told no treadmill and certainly no weight lifting for quite a while. I think it was six weeks before I was back to my normal exercise activities. Try to find somenone to give you a hand the first few days, especially with your child. You shold not be bending or lifting. All the best to you!

Lexleigh3
Posts: 12
Joined: Apr 2019

Thank you! Had CT today, MD visit on May 8th. Hoping for CT results before my appointment so I can digest and think about it all.  I REALLY REALLY appreciate you all for reaching out to me and supporting me.  I hold all of you in my thoughts and prayers and am amazed at your strength and positivity.

eug91's picture
eug91
Posts: 94
Joined: Jan 2019

Like everyone said above, you're in a good position.

As far as recovery goes, in my case, I felt like I recovered pretty quickly after the nephrectomy. But when it came to actual work-outs and vigorous exercise, I wasn't ready. I had the okay to start back on the treadmill after four weeks, but my body just wasn't ready. It took me closer to six weeks before I could work out again, eight weeks before I could do everything physically I could do before the neph. 

You're gonna do great - you've got this!

Lexleigh3
Posts: 12
Joined: Apr 2019

Thank you eug91, I read your story. My anxiety is decreasing with each experience I read about.  Thank you so much for sharing!

jroco's picture
jroco
Posts: 15
Joined: Mar 2019

My kidney tumor was quoted at 1 CM on my original CT. I was put on active surveillance and 8 months later I had another CT. The new radiologist quoted it at 1.3 cm to 1.5 CM with a 2 mm growth in 8 months so you can see he saw the original CT different from the other radiologist as far as the starting point.  Like other said above and beyond that comparing an ultrasound to a CT I would take with a grain of salt. I have also heard that final pathology could be quite different weather bigger or smaller than what the CT scan report shows. I agree with the discussions about the freezing as I went down that same path. I don't know why my doctor even suggested it considering I'm 51 and healthy and never would have known what it was because he said it was so small he couldn't guarantee a biopsy on it. I am having a partial nephrectomy in a week or so via The DaVinci so I will let you know how it goes

jroco's picture
jroco
Posts: 15
Joined: Mar 2019

My tumor is in the exact same spot as yours, lower pole left kidney. We are lucky because on top of it being small, the location that it's at according to my doctor he will not have to move any organs out of the way to get to it. you can read my bio for the exact procedure that I'm going to have. I live in Boise Idaho and apparently the hospital that I'm going to and the two doctors that are going to be working on me are the only ones that do the exact procedure that I am having in all of Idaho so they have done a ton of them apparently. Like a dummy I watched this procedure on YouTube and my recollection is a young kid with knowledge of anatomy that's very good at video games could probably do my surgery LOL PS I don't recommend to anyone watching the video

Lexleigh3
Posts: 12
Joined: Apr 2019

Thank you! The very best of luck to you! I hope all goes perfectly, including your recovery. Oh...and-I will not watch the video, lol!

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

Hi and welcome! 

I took care of my husband post nephrectomy. I've also been a special education teacher for 19 years. I can say with certianty that you will need someone to take care of all your daughter's needs, around the closk while you recover if you do indeed have surgery (which it sounds like you will probably opt to have). Bending, reaching, twisting, and all of the ways you take care of yourself will be difficult for a few weeks let alone for someone else. Luckily, you have plenty of time to prepare. I know it is always challenging to find respite care/trained in home caretakers but make sure you take care of yourself when/if you have the surgery. Best of luck to you. 

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