I'm new with questions

sstein16

Good Day to all,

I am trying not to google but I just have so many questions.  I am just looking for your thoughts on a few things.  On 6/23/16 I have a total rt open radical nephrectomy.  I'm from a smaller town and everything all happened so fast I'm just now putting things together.  The surgeon did not remove the adrenal gland nor did he remove any lymph nodes for sample.  Below are is some info about the path report.

The kidney was a bit of a mess with multiple cysts the size of the kidney was 24 cm x 14cm x 9.5cm.

1. RCC tumor (clear cell type) was 11cm x 10.2 cm x 10cm making making it stage 2; pT2b and grade 1.

2. The report states that the tumor was confined to the kidney without capsule invasion.  

The doctor is saying "we got it all" but is it odd that he didn't take a lymph node to sample??  or really anything else??  I am not sure what type of follow-up at this time but my gutt feeling is I want scans sooner than later.... I just don't know.

 

Also, I am not all that comfortable going back to work full time next week.  I get so tired I have never experianced anything like this before.  I this normal, will it get better, is it ok to ask for more time off work because I'm on my feet all day???  

Thanks everyone in advance.... just a little dazed annd confussed

icemantoo

Welcome

Sstein16,

Welcome to the club which no one in their right mind would volunteer to join.

1. You just had major abdominal surgery. Take a few more weeks or even months to get back to work.

2. As for scans you need an aggressive schedule becase of the size of your tumor, like every 3 months for the first year with details to be worked out with your Doctor.

3. Because of the size of your tumor see an Oncologist preferably one who specializes in Kidney Cancer. You may have to go to a larger Cityor University for that.

4. AS for the lymth nodes and adrenal glands and what he did or did not. that is above my paygrade.

 

Keep us up to date. You will find a lot of help here, Mine was 14 years ago, but under 5 cm.

 

 

Icemantoo

Pandabear1011

Hi sstein, I had a 6cm grade

Hi sstein, I had a 6cm grade 2 tumor removed May 2014. They did not take the adrenal gland or any lymph nodes. The previous CT Scan showed no spread to either of those areas. He also visibly examined those areas when he removed the kidney. With your larger tumor you should definately be seeing a kidney cancer specialist. I go to MD Anderson in Houston, Texas. Your pathology lists your grade as 1. That's a great prognostic feature. It means that the cancer was probably slow growing. I was cleared to go back to work 6 weeks after surgery. Wishing you all the best, Panda

Footstomper

Iceman

I agree you've had major surgery, it will take a very long time to return to work. Overdo it at your peril

hardo718

Welcome Sstein

I was 59 years old when I had my left partial neph.  I never felt so weak in all my life, so you are not alone.  My job at the time required me to be on my feet most of the day and I was released to go back "light duty" but that first week back was hell!!  And I only stayed half days that week because I was so tired.  My coworkers were awesome though and I truly didn't do much, but I still felt like I was pushing it.

If you can take more time off, do!

Best wishes,

Donna~

Bay Area Guy

You Need Time to Recover

As others have said, you have had a very major operation and your body is going to need time to recover.  Many of us were fortunate that our operations were minimally invasive and as a result, our recovery times are shorter.  You had an open procedure.  That's ging to need a lot more time to recover because your muscles are going to need to knit back together.  Iceman's suggestion to try to get to a major hospital with urologic oncologists that have treated kidney cancers of your type is also a very good one.  It might be a little bit more of a hassle to get to the appointments, but in the long run, you'll thank yourself.

Best wishes for a speedy and complete recovery.

sstein16

icemantoo said:

Welcome

Sstein16,

Welcome to the club which no one in their right mind would volunteer to join.

1. You just had major abdominal surgery. Take a few more weeks or even months to get back to work.

2. As for scans you need an aggressive schedule becase of the size of your tumor, like every 3 months for the first year with details to be worked out with your Doctor.

3. Because of the size of your tumor see an Oncologist preferably one who specializes in Kidney Cancer. You may have to go to a larger Cityor University for that.

4. AS for the lymth nodes and adrenal glands and what he did or did not. that is above my paygrade.

 

Keep us up to date. You will find a lot of help here, Mine was 14 years ago, but under 5 cm.

 

 

Icemantoo

Thank you Icemantoo for the

Thank you Icemantoo for the support words of wisdom!!!

sstein16

Pandabear1011 said:

Hi sstein, I had a 6cm grade

Hi sstein, I had a 6cm grade 2 tumor removed May 2014. They did not take the adrenal gland or any lymph nodes. The previous CT Scan showed no spread to either of those areas. He also visibly examined those areas when he removed the kidney. With your larger tumor you should definately be seeing a kidney cancer specialist. I go to MD Anderson in Houston, Texas. Your pathology lists your grade as 1. That's a great prognostic feature. It means that the cancer was probably slow growing. I was cleared to go back to work 6 weeks after surgery. Wishing you all the best, Panda

Thank you Pandabear for the

Thank you Pandabear for the feedback!!!

sstein16

Footstomper said:

Iceman

I agree you've had major surgery, it will take a very long time to return to work. Overdo it at your peril

Thank you Iceman for the

Thank you Iceman for the support !!!

sstein16

hardo718 said:

Welcome Sstein

I was 59 years old when I had my left partial neph.  I never felt so weak in all my life, so you are not alone.  My job at the time required me to be on my feet most of the day and I was released to go back "light duty" but that first week back was hell!!  And I only stayed half days that week because I was so tired.  My coworkers were awesome though and I truly didn't do much, but I still felt like I was pushing it.

If you can take more time off, do!

Best wishes,

Donna~

Thank you for the feedback,

Thank you for the feedback, yes I'm 49 and have never experienced anything like this!!

sstein16

foroughsh said:

Very similar diagnosis

Very similar diagnosis

Mine was 10 cm confined to kidney stage two tumor. I'm two years free of cancer, and hopefully remain so for many years to come. Wish you the same happy ending story.

My surgeon did't take any lymp nodes either. So far so good. The surgeons look at what is visible and also count on their experiences. I was also worried that he might have missed a malignant tumor but time passed and proved me wrong.

I had my first series of scans and blood test three months post surgery. Lung, abdomen ,pelvic with/without contrast.

Then he sent me for US on the sixth month post surgery, another C.T was done on 9 months post surgery. And this routine went on for a year. Now the interval between each U.S and C.T is four or  five months.

Keep calm and take rest. Your body has gone under  a majer change. Help your body to regain the strengh

Forough

 

Thanks for he feedback and

Thanks for he feedback and positive news of being NED. For 2 yrs!!!  

foroughsh

You're welcome

You're welcome

Stage two has good survival rate because although the tumor is large, it is still confind to the kidney. all stage one and two patients have localized tumor and these tumors response well to nephrectomy. Grade one, is the best outcome a stage two cancer survivor could wish for, the aggressiveness of tumor depends on some factors including grade.

Wishing you a quick uneventful recovery

Forough

foroughsh

Very similar diagnosis

Very similar diagnosis

Mine was 10 cm confined to kidney stage two tumor. I'm two years free of cancer, and hopefully remain so for many years to come. Wish you the same happy ending story.

My surgeon did't take any lymp nodes either. So far so good. The surgeons look at what is visible and also count on their experiences. I was also worried that he might have missed a malignant tumor but time passed and proved me wrong.

I had my first series of scans and blood test three months post surgery. Lung, abdomen ,pelvic with/without contrast.

Then he sent me for US on the sixth month post surgery, another C.T was done on 9 months post surgery. And this routine went on for a year. Now the interval between each U.S and C.T is four or  five months.

Keep calm and take rest. Your body has gone under  a majer change. Help your body to regain the strengh

Forough

 

Teashea

How are you feeling now?

My right kidney was removed Dec, 2005. No chemo or radiation. Follow up ultra sounds first every 3 months, then every 6 months. After about 6 years I started getting real tired. It was about the 9 year mark I was told my cancer was back and had metastized. Ultra sound scans were not good enough. c-scans would have been better for me. Blessing to you. Tea

Sammie23

Hello

This is my first time on this site and  I wanted to provide some light to what I know is a scary time for you. Every person is different but maybe providing you with what I had gone through will give you more insight into what at least one person experience is.

I was diagnosed with RCC Stage 4/Grade 3 at the age of 43. I had a radical nephrectomy 8 years ago. My left kidney was consumed by the tumor and I had such amazing doctors that I was able to make it through.  I was off from work for 3 months and it took some time to build my strenght back up, dont rush, build your strength up when recovering.

 I was put on Sutent back when I had my kidney removed (2008). I had to stop as the side affects were harsh. A year later I had a reoccurance in my liver. I then had IV chemo and within 3 months it was gone. I was then put on Afinitor (evorlimus).

It has been 8 years and within the last year and half there was a spot in my lung and was monitored. It never got bigger than 8mm that it was decided to have it removed. Four months after surgery and I have had a scan and the spot in my liver has now reappeared. Possibly my medicine is no longer working. I am starting my new medicine, Votrient and will see a surgeon to have the tumor removed from my liver.

After 8 years and the only thing that came up were 2 spots, I was told is amazing. The road ahead is long but it can be a good one as long as you stay ahead of it. Complete your scans when you need to, for me its every 3- 6 months. That is whats going to help catch things early. Stay healthy physically and mentally (which I know is the difficult) but you can do it with family, friends and support groups.

If after 8 years Im still here after having close call with an uncertain future, anything is possible with the help of modern medicine which is always changing and improving, wonderful physicians and self determination to stay strong. You are your own advocate when it comes to your health so be sure to ask questions, see second opinions if you need to.

There is hope and you will make it through.

Ill keep you in my thoughts and prayers.