New here, RCC, Surgery scheduled 3.6.13

icemantoo said:

Lucky?

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

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. 

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

cardsnboys said:

Thank you everyone for your

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

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)

cardsnboys said:

Thank you!

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

 

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)