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New here, RCC, Surgery scheduled 3.6.13

cardsnboys's picture
cardsnboys
Posts: 5
Joined: Feb 2013

Hello,

 

My name is Brandy and I am new to the boards here.  I was diagnosed on February 7th and have a tumor removal and partial nephrectomy scheduled for 3.6.13.  I have come here for support and just to gain more understanding of RCC and its symptoms, treatment and recovery stories.  Luckily they caught my tumor by accident back in August of 2012.  It was only 1 cm, so I was scheduled for a follow up US.  The tumor on my left kidney grew 1 cm in less than 5 months and they have confirmed that it is RCC.  I am very nervous, I am 28 and have 3 boys, ages 9, 4, and 3.  I am mainly concerned with recovery and how Im going to feel and funtion following the surgery,  I would appreciate any advice I can get,  Thanks so much!!!

icemantoo's picture
icemantoo
Posts: 1476
Joined: Jan 2010

Brandy,

 

If you are going to get RCC you are very lucky that it was found and is being removed early. The recovery from surgery alone should be close to !00%. At 28 years of age your surgery should be a lot easier than for us oldies. Mine was 10 and 1/2 years ago at age 59. There seems to have been at least a half dozen young mothers on this booard in the past year. One even felt so well that she went on a roller coaster 90 days after surgery. Even she admitted that she should of waited another 3 months.

You are going to be in severe pain for the first few days and on bedrest for the first week or two. By four to six weeks and absent any complications you shuld be able to do everything, but not necessarilly 14 hours a day. Get some extra help with the boys for the first couple of months. They are not going to understand your limitations.

Welcome to our club which nobody wants to join.

Icemantoo

dhs1963's picture
dhs1963
Posts: 368
Joined: May 2012

One question to ask is if anyone else in the family has had RCC?  You are young for the disease, which can indicate a familial risk.  If  others in the family (parents, siblings, etc) had RCC, it is possible that there is a genetic component.  If you are the only memeber in your family that had this, disregard it.

Second coment is about the recovery.  Expect to be under limits of how much you can lift for 6 weeks. 

Mimir
Posts: 24
Joined: Dec 2012

I think I am the youngest person (18) currently on this board. I had a radical nephrectomy for an 7+cm tumor a little over 6 weeks ago. I was in good physical shape before the surgery, which I think helped me to recover.  Those of  us who are young seem to heal quicker than many of the older survivors. Right now, I feel 95% back to normal. I am back in college with a full load (have been since 3 weeks after surgery) and earlier today I was able to do 15 pushups with no problem. I still had a bad first week like everyone else though.  Surgery affects everyone differently. While we can give you anecdotal stories, each persons recovery will be a little different.

 

I found the day exam reading period started. It was hugely stressful the first couple of days and I wasn't sure I was going to be able to finish the semester. I had a slight epihpany when I realized my worrying wasn't going to accomplish anything. From that point on, I pretty much buckled down and focused on my exams. Now, I worry about recorrunce (large tumor, young age, still no pathology report).  It is impossible to eliminate all worry, but if I immerse myself in work or some other sort of project, I  am able to put morbid thoughts out of mind.

Good luck with your surgery!

todd121
Posts: 515
Joined: Dec 2012

Hi Brandy. Sorry you're here, but I think if you have RCC it's better off to be here than not. They may not get an accurate size of the tumor until the pathology. US and CT without contrast are very unreliable with regards to size of the tumor. By the way, how have they confirmed it's RCC? For me, they couldn't confirm that until they took it out and sent it to the pathologist. Did they do a biopsy? Your pathology report should come a week after surgery and it will give you more details about the type, size, and stage of the tumor.

I had my right kidney removed Dec 10th. I spent 6 weeks at home recovering and then went back to work. My tumor was 6.8cm and located in the center of my kidney so the entire kidney had to be removed. I spent 2 nights in the hospital. I was walking gingerly around the ward on the third day before going home. I was able to climb the stairs when I got home, but avoided that for a good 10 days. I think it was about 2 weeks that I started going outside for walks but didn't drive for about 3 weeks. My bedroom is upstairs and I live alone, so I put a microwave and small fridge in my upstairs bathroom and turned it into a temporary kitchen so I wouldn't have to climb stairs the first couple of weeks. That worked out pretty well.

You're not going to be lifting your 3 year old for a few weeks. The first week will be tough. You will definitely need help with your sons for the first couple of weeks.

I wish you well. You're very lucky they caught it so early. The cure rate with early resection of a small stage 1 tumor is quite high. However, you're going to have to be monitored with scans every 6 months for a couple of years and yearly maybe to 5 years. I've also heard it might not be a bad idea to keep that up after the 5 year mark.

Todd

STurner68
Posts: 12
Joined: Apr 2012

I mainly lurk, but did want to reach out to another mom. I have twin girls 5-1/2 years old. I underwent partial nephrectomy in April 2012 for a 1.2-cm clear cell tumor. As tough as it is for us moms to put us on the front burner for a change, do it. I sent out e-mails to the families of my kids' classmates and every time someone said "let me know what I can do", I found something for them to do, whether it was picking up my kids from school or bringing us a meal, babysitting, etc. I also listened to my doctor's suggestions and proscriptions, even when I felt well enough that I thought I might safely ignore them. I was walking up and down the block, albeit very slowly, the day of discharge, three days post surgery. I was able to enjoy the warm spring days by laying on a lounge chair in the back yard so I could watch my kids play. I took it very easy. For me, the hardest part was not being able to lie comfortably in bed, but within three or four weeks, this discomfort was all a memory. The fatigue in the early postop period is killer. A physician friend likened this surgery to being run over by a truck, and I have to say he's pretty spot on there. But every day there was improvement. My kids' birthday is at the end of May and I was back to 100% by then. Back to work full time, able to plan and execute their party, etc., and I have 16 years on you, so you should be in even better shape! Welcome to this board. It's an awesome place and it's become a part of my daily reading, even though I'm not very active with posting. Please let me know if there's anything else I might be able to help with, from mother to mother. Take good care!

cardsnboys's picture
cardsnboys
Posts: 5
Joined: Feb 2013

Thank you everyone for your replies!  My doctor said that he is 99.9% positive that it is RCC due to the growth in the last 5 months, the Characteristics of the tumor and the internal echo?  I do not have family history of Kidney Cancer but I had a hysterectomy back in October of 2010 for cervical cancer and I have had 9 other surgeries in the past two years.  All the lymph nodes in the left side of body are enlarged including axillary and Cervical nodes.  They tell me my immune system is highly sensitive which can be somewhat of a double edged sword.  The tumor is now 2.1 CM and I am having the DA Vinci surgery.  My doctor did tell me he expects me to be "down" for 2-4 weeks, I also have complications with Anesthesia so I am expected to be in the hospital for a week.  Luckily I have a huge support system, and my Aunt is planning on staying with me for a month to help with the boys and my mom only works 5 minutes away.  I feel extremely lucky that this was caught early, my only concern is the recovery period.  I am somewhat of a stubborn person and I always push myself harder than I should following my surgeries. I was told this one would be much more painful than any of my prior surgeries and to be prepared for a much longer recovery period.  I really appreciate all of your replies and I am so thankful to have somewhere like this to turn to for questions and support from others who are going through or have gone through similar experiences. 

 

Brandy

cardsnboys's picture
cardsnboys
Posts: 5
Joined: Feb 2013

Thank you everyone for your replies!  My doctor said that he is 99.9% positive that it is RCC due to the growth in the last 5 months, the Characteristics of the tumor and the internal echo?  I do not have family history of Kidney Cancer but I had a hysterectomy back in October of 2010 for cervical cancer and I have had 9 other surgeries in the past two years.  All the lymph nodes in the left side of body are enlarged including axillary and Cervical nodes.  They tell me my immune system is highly sensitive which can be somewhat of a double edged sword.  The tumor is now 2.1 CM and I am having the DA Vinci surgery.  My doctor did tell me he expects me to be "down" for 2-4 weeks, I also have complications with Anesthesia so I am expected to be in the hospital for a week.  Luckily I have a huge support system, and my Aunt is planning on staying with me for a month to help with the boys and my mom only works 5 minutes away.  I feel extremely lucky that this was caught early, my only concern is the recovery period.  I am somewhat of a stubborn person and I always push myself harder than I should following my surgeries. I was told this one would be much more painful than any of my prior surgeries and to be prepared for a much longer recovery period.  I really appreciate all of your replies and I am so thankful to have somewhere like this to turn to for questions and support from others who are going through or have gone through similar experiences. 

 

Brandy

NanoSecond's picture
NanoSecond
Posts: 515
Joined: Oct 2012

Hi Brandy,

You are going to do just fine. I suspect you will get some excellent pointers here about dealing with your recovery from surgery. One very important thing to know: if you continue to take any major pain medications such as Oxycodin, Percoset, Vicodin, Tramadol, etc. - they all cause major constipation.  So make sure you have a plan for dealing with that. Miralax works great - but your doc's may have other suggestions.

Now I want to give you some guidance going forward after your recovery is a memory.  It is advice that I wish I had been given after I had a radical nephrectomy back in May 2010  That was due to an 11cm tumor discovered inside my left kidney.  At that time, since the tumor had been fully encapsulated in the kidney and there was no sign of any further spread, I was deemed to be "cancer-free" (actually the proper term is NED = "No Evidence of Disease").  I was so happy that I had "dodged this bullet" that I did not pay any more attention to my diet and nutrition going forward.

But as many other posters here must know, I now think that was a major mistake.  This past July bone mets were discovered on my sacrum (base of my spine) and left femur (thigh). That was a major wakeup call for me to finally get my act together.

I recommend that you might want to consider this:

http://www.youtube.com/watch?v=KLjgBLwH3Wc

If her story inspires you to ponder what, if anything, you might do to minimize the possibility of a recurrance (or developing mets) then I suggest following up by reading the book: "Life Over Cancer" by Dr. Keith I. Block.  There is a chapter in his book dedicated to fortunate folks like youself. It's called, "What to Do When Treatment Ends: Growth Control and Containment in the First Year That You're Cancer-Free".

I hope this helps.

-NanoSecond (Neil)

foxhd's picture
foxhd
Posts: 1873
Joined: Oct 2011

Boy, you're no rookie to surgery and health issues are you? You sound as though you've had as many body parts removed as I have. My wife tells me I'm not half the man I used to be! At xmas everyone gives me tupperware to hold all my pieces. My wife is planning to cremate me when I die. So she brought home just 1 pack of matches. Kidding aside, you already know how to do this. Take the assistance being offered. Youth is on your side. Good luck. Fox.

cardsnboys's picture
cardsnboys
Posts: 5
Joined: Feb 2013

Foxhd, I know exactly how youn feel!  I tell everyone all the time that I wonder if I will have any parts left to function someday.  So far I have had a Hysterectomy, Gallbladder removal, 1 Inguinal hernia repair with mesh placement caused from scar tissue from the hysterectomy, Abdominal Adhesion removal, 2 Vental Epigastric Hernia Repairs, FNA, 3 Lymphectomies, and a lumpectomy.  I feel like a human lab rat at times.  It seems as though each time I go in for follow up from one thing, they find another.  I just turned 29 this past Saturday and the realization of what is ahead weighs heavily on me.  I am so thankful it was found early and I know it could be much worse.  I always try to remain as positve as possible and I am grateful to have the suport network that I do.  I also have something very rare called Familial Hypokalemic Periodic Paralysis that cause me to be paralyzed for unknown lengths of time following my surgeries.  I was paralyzed for a week following my hysterectomy.  The doctors say the longer I am under, the longer the paralysis seems to last.  That has been one of my major concerns as well.  I am truly grateful for finding this site, it has really helped thus far.  Thanks again for everyones comments and advice!!!!

 

Brandy 

cardsnboys's picture
cardsnboys
Posts: 5
Joined: Feb 2013

Nanosecond, thank you so much for the advice.  I will look into and I really appreciate you taking the time to share that with me!  I am definitely wanting to learn all I can and soak in as much knowlegde  can to make sure the chances of recurrence are as slim to none as possible!

 

Brandy

 

NanoSecond's picture
NanoSecond
Posts: 515
Joined: Oct 2012

Hi Brandy,

I am very pleased to see that you want to be proactive.

I have bone mets - lytic lesions on my left femur (thigh) and sacrum (base of my spine). Since August I have been taking the maximum dosage of Sutent (50mg/day) and Xgeva (for bone repair and health).  In all these months I have had no significant side effects to taking these drugs.  And the last full body nuclear bone scan (plus X-rays) of my affected areas showed that my sacrum now looks "normal" and the lesions on my left femur were all showing "dramatic" response -- only new bone growth.

This, I believe, is primarily due to the diet that I am following and certain supplements I take.

I have spent a lot of time doing extensive research before embarking on this particular adventure.  Like you, I wanted as much knowledge as possible.  Still do. In that regards I have prepared a 51-page .pdf document that outlines the science and the rationale behind what I am doing - and what I call a "proper" diet and "appropriate" supplements for stage IV renal cancer patients.

If you email me at: n.feldman@videopost.com

I will be happy to directly send you a copy.  It is far too long to post here.

Hang in there,

-NanoSecond (Neil)

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