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Just diagnosed with stage 1

DYAN172
Posts: 20
Joined: Sep 2015

I was just diagnosed with stage 1 rcc via CT confirmed by MRI. It does not based on MRI appear to have spread. The tumor to 3 or 4 cm. I have Da Vinci partial scheduled in two weeks. I know I'm blessed but I am so afraid. Can anyone tell me what to expect?

icemantoo's picture
icemantoo
Posts: 3227
Joined: Jan 2010

Dyan,

 

Compared to many on this board you are one lucky person. I know hearing the words kidney cancer and surgery does not make you feel lucky and of course scares the sh.. out of you (and me as well) at first. With a little bugger of 3 or 4 cm barring the unexpected you are destined to be cancer free after that little thing called the neph. Mine was a lucky 13 years ago. As to what to expect I would be laughed off this board if I told you the surgery is pain free. I can assure you however that it beats the alternative. Depending on your age and health you should be back to a slow normal in 4 to 6 weeks. A neph already. Lets get the surgery and recovery behind you. Then you can help me with the newbies down the road.

 

 

Icemantoo

DYAN172
Posts: 20
Joined: Sep 2015

Thank you so much!

Sheeple
Posts: 19
Joined: Jul 2015

Expect the anxiety, it comes with the territory. As far as the surgery, assuming everything goes as planned you simply go to sleep then before you know it you will wake up with several bandages and likely a drain installed. There will be a little pain but nothing that can't be managed very easily. You'll probably spend one or two days in the hospital. Then its just time for you to recover, about 6 weeks or so. Very shortly afterwards you'll get a pathology report that will pin down exactly what the tumor was, its size, grade, type. What happens after that depends on those results. Mine was only a 2.5 cm, a stage 1a, grade 2 ccRCC, and I didn't get any follow up which is a little unusual. Most people will get at least annual follow up care for a few years. Again, the exact frequency will depend on the pathology.

DYAN172
Posts: 20
Joined: Sep 2015

I appreciate your feedback.

Shecka1121
Posts: 114
Joined: Apr 2015

DYAN,  I am also stage 1.  My mass was 1.2 cm and I had my surgery in June.  Depending on the location of the tumor you will most likely have a partial and be able to maintain kidney function.  If the tumor is close to something that makes the surgery more risky then a radical may take place.  Many people live long healthy lives with one kidney.  However, if this is the recommendation get a second opinion from a dr that has experience doing partials.  I am learning that many people get their entire kidney removed for small tumors because the doctors are not skilled at partials.  

After the surgery you will be sore, but I was able to walk around the same night and took four weeks off work which I walked everyday for a few miles.  I feel back to normal now and have kept up with my Zumba classes, kick boxing, etc.

 

I have follow up scans every six months and when I hit three years I will have them annually for the rest of my life.

 

I would go with a dr that ensures you have follow-up.  

 

You are going to be just fine.  Recurrence is very low, less than 5%.

DYAN172
Posts: 20
Joined: Sep 2015

Thank you so much for sharing. I appreciate you so much!

APny's picture
APny
Posts: 1949
Joined: Mar 2014

Mine was a 3.4 cm stage 1 also and they did an open partial nephrectomy. While it wasn't fun, it was nowhere near as painful as I had feared, and that was an open suregery. From what I'm told, the lap ones are even easier on the body. I was up and walking that same day, and home in two days with a drain. Not everyone has the drain; it all depends on how close the tumor is to the collecting duct. But even that was no biggie. I came home with it, slept in my own bed, sat at the computer and did work the next day, and basically walked as much as possible. Pain was easily managed in the hospital and I was off them and just taking Tylenol in about 10 days. Don't be afraid to use the pain meds; don't wait until you're in pain. Take them on schedule as directed. Also, expect to be constipated so take a mild laxative and stool softener. They gave them to me while in the hospital. WIshing you an uneventful surgery and speedy recovery!

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

Mine was 10cm grade 4. What you have my friend is a very treatable disease with a very scarey name. Do what what the Doctors tell you and you'll be fine

DYAN172
Posts: 20
Joined: Sep 2015

I hope you are doing well. I do feel very blessed. I thank you for your time. It is a scary word to hear.

DYAN172
Posts: 20
Joined: Sep 2015

Thank you so much for your post and good wishes!

DYAN172
Posts: 20
Joined: Sep 2015

I so appreciate your feedback!

jason.2835
Posts: 337
Joined: Nov 2014

DYAN,

I had the robotic Da Vinci surgery in Oct of 2014.  2.8cm tumor.  The plan was to originally do a partial but I had an extra artery in the kidney and the doctor had to take the whole thing out in the interest of safety.  This happens in around 10% cases, I was told.  Lucky me.

The surgery itself was ok; pain-wise I did not have a rough go at all.  Fatigue for a couple weeks was the worst thing for me.  I was back at work in 4 weeks.  Waking up from the surgery wasn't fun, either... I am not fond of anaesthetic or painkillers and my breathing got a little messed up... So I spent some extra time in the recovery room... and then, of course, finding out my whole kidney was gone... were the worst parts about the surgery.

I'm sure you've already Googled your prognosis; it's definitely good.  If you have a low-grade (Fuhrman Grade 1 or 2) and small tumor you will most likely have a very low probability of the cancer returning.  You will have to wait for pathology to find out what type (clear cell is most common), and then your doctor will have more information for you.  But even if it is a less common subtype, the size of your tumor still lends itself to a generally positive prognosis.  

There is even a 10% chance it may not even be cancer.  There are 1 or 2 people on this board who can attest to that.

So, first things first... GET IT OUT.  You will feel a WHOLE lot better knowing the cancer is outside your body.

- Jay

DYAN172
Posts: 20
Joined: Sep 2015

Thank you so much for the info. This board is certainly a blessing.

medic1971's picture
medic1971
Posts: 190
Joined: Sep 2015

Hello DYAN172,

I'm in the same e boat as you.  I recently had a CT scan done and I was found to have a 2.1cm lesion on my right kidney.  I'm going to have the same surgery at MD Anderson on Oct 23rd.  I know what you are going through.  My scan was done at the end of July so I've had time to process this a little longer than you.  I've also research the sh%t out of this subject too.  Here are a few things to keep in mind that might help you like it  did with me.

1. MD Anderson told me that there is a 70-80% chance I have cancer, but that means there's a 20-30% chance I don't have cancer.  There's no way to tell for sure without a pathology report.  There are a few benign lesions that look very much like rcc.

2. The survival rates you most commonly see online are not accurate. Those numbers come from the National Cancer Data Base and are based on patients whose cancer was found in the years 2001 and 2002.  Wow, a whole year?  You guys really went all out there, NOT!.  I'd put our survival rate at greater than 98%.

3. Here is a great video that really gave me a lot of comfort.  https://www.youtube.com/watch?v=Er7gmP3N-mY

4. If you don't already start taking care of yourself eat right, exercise, and get plenty of rest.  

5. If you are having issue with anxiety talk to your doctor and get on something.  I am currently taking 0.5mg of Xanax mainly at night because that's when my mind won't shut off.

Good luck and please keep us informed.  

 

Jason

 

 

Denisedh's picture
Denisedh
Posts: 28
Joined: Aug 2015

It is true they won't know for sure about malignancy until the tumor is tested.  I had 2 ct scans and an mri.  Both said very likely cancer but mine was benign.  However, stage 1  RCC  is very treatable.  Prayers for you both.  Waiting for surgery is hard, waiting for test results is hard too.

DYAN172
Posts: 20
Joined: Sep 2015

I am so touched truly by your response of encouragement. I am brought to tears how supportive this group has been. I'll be having mine 10/8 in Nashville at St Thomas. Thank you again for taking your time to reach out to me. I hope I'll be able to be a source of support in the future.

DYAN172
Posts: 20
Joined: Sep 2015

So appreciate you reaching out to me! I wish you the best please keep me informed on your progress. 

Thanks again!

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

Welcome!

You must be feeliing quite scared. That is normal. You already know that you have an excellent prognosis.

The best that you can do for yourself right now is prepare ahead of time....have a comfy place to recuperate, get all your laundry done ahead of time, groceries - even make and freeze a few meals so that you can be ready. When you are home you will likely need some medication. But if you can, ice packs are good suggestion. Hopefully Jan will chime in here to advise exactly how she did it. The surgery isn't comfortable, but really not that bad. It's come a long way!

It will be behind you before you know it. But try not to overdo it...the insides take a long time to heal. And you don't want to risk getting a hernia.

Keep us posted on how you are doing!

Hugs

Jojo

DYAN172
Posts: 20
Joined: Sep 2015

I am so thankful for your taking time to share your info with. Thank you from the bottom of my heart!

Hugs back ~

DYAN172
Posts: 20
Joined: Sep 2015

The ice packs were a great suggestion. They are and have helped GREATLY!

 

Thanks!!

medic1971's picture
medic1971
Posts: 190
Joined: Sep 2015

Hope all is going for you!  i know your big day is coming up so please let me know how it goes so I have an idea what i'm in for :)  

 

 

DYAN172
Posts: 20
Joined: Sep 2015

I sure will. I had preop yesterday. Surgery 10/8 around 7:30 am.

foxhd's picture
foxhd
Posts: 3183
Joined: Oct 2011

that all you need to do is trust your health care team. They are the ones who know how to prepare for your surgery and recovery. So, sit back and watch the pros at work. They have done this many times. There should be no pressure on you.

medic1971's picture
medic1971
Posts: 190
Joined: Sep 2015

Hey, I hope everything went well for you and you are resting comfortably back home.  

DYAN172
Posts: 20
Joined: Sep 2015

I came home yesterday. Amazing they only kept me one night. I will not lie its very uncomfortable. I slept my first night in a chair. I made it to my bed tonight. Lots of ice packs as suggested here has been a life saver. I am only using extra strength Tylenol I couldn't stand the way I felt on onxycodene. I don't have path back but based on preliminary reports it looks good.

 

Please feel free to reach out to me I'll tell you as much as I can. Prayers for you

icemantoo's picture
icemantoo
Posts: 3227
Joined: Jan 2010

Dyan,

 

You sound pretty normal to me right after a neph.

 

Icemantoo

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

I'm happy it's done successfully, wishing you an uneventful speed recovery.

Forough

 

APny's picture
APny
Posts: 1949
Joined: Mar 2014

So glad it's over and you're able to post. It also sounds like you're handling the pain issue pretty well. Make sure you walk a lot (at least 5 minutes every hour) to keep your lungs clear and get your body back to its usual state. Also drink lots of water. Hoping for the best path report! Mine took a week to get.

suzymcdo
Posts: 20
Joined: Sep 2015

Glad to hear you are home. Wishing you a speedy recovery.

DYAN172
Posts: 20
Joined: Sep 2015

Pain wise its much better today getting around becomes easier. Warning don't over do no matter how well you feel. Pace yourself. Prayers coming your way. Please let me hear from you!

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

It is, and will continue to get better. Dont fret mate, you've had pretty major sugery. It will hurt a bit and get better

Texasgranny38's picture
Texasgranny38
Posts: 24
Joined: Jul 2015

Jason,

I really appreciate your sharing the link on kidney cancer.  I got to watch two of Dr. Christopher Wood's lectures.  He was my kidney surgeon at MD Anderson.  I kept it in my favorites and intend to browse through other interesting info.

I wish you well on your upcoming surgery on the 23rd.

Take care,

TexGran

DYAN172
Posts: 20
Joined: Sep 2015

Stage 1 lowest grade RCC

X-rays to follow up. No treatments.

 

If not for you all here I think I would have lost my mind I thank you all from the bottom of my heart!!!

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