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Renal Cell Cancer

sunlover_56's picture
sunlover_56
Posts: 110
Joined: Apr 2012

I just had my left kidney along with a mass they are calling cancer removed April 4th. I am home now and feeling very sore, swollen and scared. They told me they believe it was all contained to my kidney and that they re pretty sure they got it all. My anxiety level is though the roof. this came out of left field while having a ct scan done for something eles. I am grateful it was found early (possible stage 2) but I am still so scared. they are going to do a biopsy but I wont have the results for a week. I found this site while surfing for others like me. Its been encouraging reading all your post. thank you

j_rod
Posts: 125
Joined: Mar 2012

Welcome to the club....and sorry you had to join. On the other hand, it is the best place to be right now. I am glad you are home. I had mine on April 3rd. Mine was a partial nephrectomy. You will find a lot of support here and a lot of useful information. For what it's worth, this site has a lot of survivors because, if caught early, kidney cancer can be eliminated with the operation. There are varying stories here...but like you, mine was found when having a ct scan for ab pain which turned out to be diverticulitis. That was Sept 23 and I just had my operation. So I guess it is great for both of us it was found early. Take your pain meds on schedule. Drink lots of water. Have someone help you when you need it. Rest. Take care.

JackieP125's picture
JackieP125
Posts: 55
Joined: Jan 2012

I am 3 months post-op. I lost my right kidney back in January. My cancer was also found while looking for something else during an ulrasound. You have come to the right place. There are people here who have plenty of experience and lots of advice to offer. I am still healing one day at a time but keep in mind it does get better. By the way, I am also a sunlover. Sorry we had to meet under these circumstances. Take care.

Fishknees
Posts: 73
Joined: Mar 2012

My cancer was also found looking at my gallbladder.

Surgery is Friday a.m.

I am glad you are home. Take good care of yourself.

Have a great evening.
Fishing

DDBurkhardt
Posts: 13
Joined: May 2012

I am scheduled for a radical nephrectomy on May 22 to have my left kidney removed. My tumor was also found when I was having an MRI for something else. I have my CT scan tomorrow to make sure that the cancer hasn't spread to my lungs, stomach or pelvis. I am scared to death. I was diagnosed last week and have been on all types of web sites reading about kidney cancer. Has anyone had the surgery that is a diabetic? I realize that a person can live w/only one kidney, but I'm wondering if having diabetes puts your good kidney at more risk.

I have to say that reading all the comments on this web site has actually made me feel a little better about the surgery.

I hope there is someone that can shed some light on living w/one kidney and being diabetic.

icemantoo's picture
icemantoo
Posts: 1452
Joined: Jan 2010

DD,

Like High Blood Pressure diabities makes it harder to sustain Kidney Function. Some of your kidney function numbers are going to go down after the surgery. Make sure you follow up with a nephrologist after surgery so that your kidney can be more closely monitoried.

Icemantoo

sunlover_56's picture
sunlover_56
Posts: 110
Joined: Apr 2012

Thank you so much. I just got off the phone with the Dr. The biopsy confirmed is was cancer stage 2. He said it was contained in the kidney. I know that is good news but I still cant help crying. I am still so scared. Thank you all for being here and listening

Beingbless
Posts: 46
Joined: Mar 2012

Sorry you're here. We all went through the similar life step with this cancer. Be strong, and look forward for every new day. If you want to live, you have to be positive and keep going...you will find yourself stronger each day.

If you believe in God, He makes His mercy New each day, in Him, there is no fear. Spend more time to read, pray and take this time to rest and not think too much.

Get your health back you will feel better.

God bless.

foxhd's picture
foxhd
Posts: 1855
Joined: Oct 2011

Sunlover, soon enough you'll realize that this wasn't your fault. Things appear to be corrected. So don't dwell on that you can't control. Energy wasted on worrying serves no productive purpose. Hang around. We'll take care of you.

Texas_wedge's picture
Texas_wedge
Posts: 2807
Joined: Nov 2011

I must be getting soft in my middle-age! That "We'll take care of you." brought tears to my eyes.

sunlover_56's picture
sunlover_56
Posts: 110
Joined: Apr 2012

Wow.. thanks foxhd. I truely believe you all will take care of me too thank you thank yoyu thank you :-)

sunlover_56's picture
sunlover_56
Posts: 110
Joined: Apr 2012

Thank you j_rod.. it really is nice to realize I am not alone. I come to this site almost every day now. I find strenght in your strenght. I got the biopsy back and it was stage 2 renal cell cancer. Dr is pretty sure it was all in the kidney and they took the whole kidney. I know I will be ok.. My daughter is having my first grandchild in August so i HAVE to be ok now lol

j_rod
Posts: 125
Joined: Mar 2012

take comfort in those who have gone before you. Iceman had his kidney taken almost 10 years ago and he is cancer free today. My aunt found a lump when she was 59 years old. Doctor told her it was a tumor the size of a baseball. He removed entire kidney. She is now 81 years old. Just retired from her job last year at 80. Drives from her home in NC to see her kids, grandkids, and great-grandkids in Florida about 4 times a year - alone! She goes to the gym 4 or 5 days a week and works out on the eliptical. And on special occasions, she will drink her share of a bottle of wine. Look forward to the grandchild - and the future great grandchild!!!!

STurner68
Posts: 12
Joined: Apr 2012

Hi, Sunlover,

I'm another newbie, now postop day four after a robotic partial nephrectomy (they took 15% of my kidney). I was discharged yesterday and have started my home recuperation.

How I can identify with that anxiety. It's only been three weeks since the initial ultrasound and symptoms that prompted it to now, but the abyss and I very quickly became old friends. Seriously, the anxiety was going to kill me long before the renal cell was. What I found very helpful was a couple of guided visualization CDs from a company called Health Journeys. For this expedition, I bought the preparing for surgery one and the cancer one. Here's the link for the cancer one:

http://www.healthjourneys.com/category.aspx?cboHealth=13&cboAuthor=55

There are other non-disease-specific ones that are equally lovely. This speaker, Belleruth Naparstek, is my favorite and I have a number of her CDs. I went from requiring Xanax multiple times a day after the diagnostic suspicion to not needing it at all within a week. As a matter of fact, I wasn't even given anything before surgery and felt completely in control of my anxiety. I was anxious, of course. I hadn't had surgery in 40 years, I was freaking starving to death, and the procedure started three hours late. But it was manageable and didn't engulf me. I can't tolerate Valium, which is what they give most folks for surgery, so we just did without. These guided visualization things are quite powerful....and there are affirmations too. I just listened twice a day and my brain held on like it was a life raft. I really feel like my recovery is going so well because the anxiety is kept at bay. I just thought I'd offer it up here. They have a free 15-minute download of a sample guided imagery CD (general health and wellness, I think) and shorter sample cuts of most of their titles, so you can try before you buy. Speaking for myself, my mind can be my greatest enemy. It catastrophizes and is not rational at all. I wanted to get it on a short leash before surgery so that I could have as good an experience as possible, and so far, so good. It doesn't promise to change the reality, it just helped me cope with the reality better. All my best to you ~ Sheila

icemantoo's picture
icemantoo
Posts: 1452
Joined: Jan 2010

Welcome sunlover_56 and the other recent newbies. Glad to hear that we can call you grama soon. My oldest turns 16 next week, grandchild that is. In no time you and the other newbies will be counting your survivorship in years, not days and months. Each day post op will feel a little better. Pretty soon you will forget that there was any pain involved. Yeah. Well lets pretend and keep up a strong front for the newbies that follow. May all of your follow up tests show NED (no evidense of diease. Each of us old timers went through similar aches and pains and know what you are going thru. Not fun unless you have a good sense of humor.

Icemantoo

Texas_wedge's picture
Texas_wedge
Posts: 2807
Joined: Nov 2011

Sheila, it sounds as though you're in desperate need of a good clinical psychologist's help. Have you explored that avenue?

Did you have much recollection of your previous surgery when you were only 3 years old? Were you not assured by your doctors that you had next to nothing to worry about, or were you simple unable to believe them? Mind-body medicine, properly used, has great power but you shouldn't be needing Xanax, Valium and the like and a whole apparatus of support CDs to cope. As you've recognised yourself, you need professional help in changing your mnd-set completely. (Incidentally, do you have a very high stress job? I see from another thread that your diet and exercise aspects of lifestyle seem to be a lot better than your Mother's and I trust you'll set your children an infinitely better example than she has done!)

As iceman has commented, your prognosis is near perfect and it's definitely miles better than that of just about everybody else on any of these forums. Your recovery should be a piece of cake, especially with your CDs to help and I think you owe it to your own children to get proper help to bring your excessive anxiety within normal, healthy bounds.

STurner68
Posts: 12
Joined: Apr 2012

Thanks for your reply, Tex (I was born in Beaumont). It was my therapist's suggestion that I try the visualization CDs. And, embarrassing to admit, I am a former mental health professional. This diagnosis tapped directly into what is my worst fear: having my children lose another parent. I almost didn't even want to adopt because I was older (I was 39 when they were born). If it was just me, yeah it would suck, but it's not just me anymore. And I have a history of falling on the wrong side of the numbers, and I now work in the medical profession, so I know the good, the bad, and the ugly and their probabilities. For instance, 1 in 10000 chance I would go spontaneously into menopause before the age of 20 with no identifiable risk factors. Slight chance, right? But bIngo....premature ovarian failure. Probability of malignant hyperthermia during surgery? 1:5000. Impossibly small. Yet not once someone's found herself on the "1" side of that colon.

I think my doctors were incredibly truthful and up front about everything, but my mind kept going back to the 1 in 10000 chance I'd have POF, sort of like when your tongue finds that cavity hole over and over again. And we've also some losses recently that hit our family a bit hard, so the foundation was shaky at best. I immediately scheduled a few sessions with the therapist and, as I stated in the other thread, was off the anxiolytics and back on track very quickly. Some people are just born with a predetermination for anxiety, and I think I stood in line twice. And there are also hormonal facets to the anxiety that spring from the ovarian failure. But I've been off of regular psychotropic medications for two decades now. Not that I wouldn't ever go back to them, but, for now, they aren't needed. I do, however, have professional help at the ready should I require it. In the other thread, I was referring to a very acute phase shortly after the news hit. This was not my usual daily dose of anxiety; in fact, ironic as it may be, I really do consider myself a positive person, albeit slightly neurotic at times. For now, I am feeling hugely optimistic and blessed that this was caught at 12 mm instead of 12 cm. Someone had my back, and I belive they had it because they knew I have two little girls who needed me for a good long while yet.

Texas_wedge's picture
Texas_wedge
Posts: 2807
Joined: Nov 2011

That's a very interesting reply Sheila so now I must thank you. (I'm not actually a Texan - I was born on the edge of London and for most of my life have lived in N.E.Scotland - "Texas wedge" is a golfing term, down to your illustrious fellow Texan Ben Hogan.)

With the luck you've had, I don't wonder that you can get uptight. What was your area when you were in mental health? (My Wife, in an earlier career, spent years teaching psychology to medical students and taught, researched and published on topics like depression and eating disorders, brain surgery and neurotransmitters.)

Your admirable concern for your Daughters and the hormonal consequences of POF make your situation unusual and it's good that you've not been using anxiolytics as a crutch. Plainly you have reached a very balanced and intelligent appraisal of the position and it's great to hear that you are feeling hugely optimistic.

I'm reading too many different books at the moment, so I'm only part way into one you would probably find interesting. It's not very long and is lucidly written, by a clinical psychologist from Cambridge (England!!). The novel and, I think persuasive, thesis challenges a key piece of received wisdom which I perceive reflected in your statement "Some people are just born with a predetermination for anxiety." While this may be true, to some extent, the resigned acceptance of that as an intractable problem is self-deceiving and unnecessarily fatalistic.

The book is significantly entitled "The Origin of Anxieties" as against 'The origins of anxiety' and that neatly encapsulates the essence of the thesis that anxiety is not a condition from which we suffer but a process to which we subject ourselves. If correct (and I believe it is) this means we're not ineluctably saddled with this problem - rather it is amenable to intervention by cognitive re-structuring. (I have yet to discover the author (Charles Merrett)'s preferred way(s) of managing this but would guess that approaches like CBT, CAT, Transactional Analysis and the like will feature as possibilities.)

My short point is that you don't have to accept that you're inescapably condemned to be anxious - you can keep your anxiety (which is valuable when not excessive) to the right level.

I'm hopeful that with your family life, coupled with the knowledge that this time your luck broke the other way and you're almost certainly cured of cancer for good, you'll keep anxiety at a useful level instead of a destructive one. Good luck Sheila!

Maryooo
Posts: 3
Joined: Apr 2012

I had da Vinci robotic surgery 4 weeks ago. My surgery went great. I am scheduled with a 6 month checkup. My cancer was removed. I had 2 small tumors. I only found these by accident after mother died of renal cell, then appro. 1 year ago sister had renal cell. I had scan to check me and accidentally found 2 tumors renal cell. I have healed great and back on my feet again. I know it's impossible not to worry some. I have a fantastic husband and want to live a long happy life without all the worrys of it returning.

Ubatz
Posts: 3
Joined: Apr 2012

Sunover_56,
I am new to the site as well. I had Renal Cancer and lost my kidney back in April 1987. I know the anxiety you are feeling. I too felt the same. It's scary to say the least. I had a check up for something else and this jumped up in my face. I am a survivor but the five years with checkups every 6 months was concerning. Hang in there.

McDMan
Posts: 2
Joined: Apr 2012

Hello,

I am in the same predicament as you as I was just diagnosed with a mass in my left kidney that is supposedly contained ( stage 1?). I am now very scared....however, I live in Canada and my surgery wait time is 8 weeks?!?! Can you tell me how long you waiting until surgery after your diagnosis?

Thank-you.

garym's picture
garym
Posts: 1651
Joined: Nov 2009

MickyD,

Can you provide a bit more information? Did they estimate the size of the tumor for you? Does "supposedly contained" mean that you have had a battery of tests including CT, x-ray, pet scan, MRI, etc.? If so then 8 weeks is a bit longer than most, but not unheard of. The majority of tumors are clear cell, if your tumor is small, say 5cm or less, the risk is minimal as RCC is slow growing and unlikely to spread for many more months.

I hope this helps,

Gary

McDMan
Posts: 2
Joined: Apr 2012

Hi Gary, Thank you for replying....

The size is 3.5cm...there is also a very large kidney stone (same kidney) that I am taking potassium for to dissolve it. I have had an x-ray and 2 CT scans (with and without dye) but no MRI. The doctors are 95% sure it is a cancer and are not recommending a biopsy for fear of spreading the cancer, bleeding, and a false negative. Today I got a reply from the doctor (specialist in urology) and he said there is a less than 1% chance of it spreading. That may be conforting to most but I am also feeling 'uncomfortable' in the area of my kidney, back, and lower body (Bladder area). I've been told that the kidney stone will cause these area's to feel this way but I can't help thinking that it could be the cancer....

icemantoo's picture
icemantoo
Posts: 1452
Joined: Jan 2010

McDMan,

Your wait and diagnosis parallels mine almost 100%. Mine was 2.6cm on the CT and 4.2cm when they took it out. During the 8 week wait my wife even took me to a B and B on the Canadian side of Lake Huron to relax. We had dinner at a nice British Pub which brought out all the dinners on a cart for us to see. I could have done without thr Kidney Pie.

As for the aches and pains they all sound familiar to me. On August 1, 2012 it will have been 10 years since the big day. Hang in there. Everything will be fine.

Icemantoo

prayncare's picture
prayncare
Posts: 3
Joined: Apr 2012

I will be having my right kidney operated on just like you had your left one, and for the same reason. I know sense I was told of the news of the tumor many people now talk to Our Lord, on by behalf, and that is sign's of good that has already come from this already. I wish you all the prayers possible.

kcasper
Posts: 4
Joined: May 2012

Good afternoon, all. I was diagnosed with kidney cancer on November 25h of last year. The day after Thanksgiving. My kids were home for the holiday so that was a blessing. I had cancer in my right kidney and the tumor had moved into and up my Inferior Vena Cava.
I had my surgery on January, Friday the thirteenth. From that you can tell I am not superstitious. I consider it a lucky day for me. They removed my right Kidney and the tumor from my IVC and reconstructed my IVC. They didn't expect me to survive the surgery, but I fooled them all. I'm still here. I am on a regiment of Sutent every day for four weeks and off two weeks. This is my 2nd round. Side effects terible on my first round. sores im my mouth, nose and throat. They sowered my dosage from 50 to 37 1/2 due to it effedting my liver. Wish me luck on this second round. I'm only 4 days in as of today.
thanks for letting me join in the conversation.

icemantoo's picture
icemantoo
Posts: 1452
Joined: Jan 2010

kcasper,

Sounds like you have a great attitude even with a less than perfect diagnosis. That should help you ge t thru this and keep fooling the doctors.

Icemantoo

kcasper
Posts: 4
Joined: May 2012

Thanks for the encouragement. I need all I can get. I'll keep you all posted.

icemantoo's picture
icemantoo
Posts: 1452
Joined: Jan 2010

kcasper,

Sounds like you have a great attitude even with a less than perfect diagnosis. That should help you ge t thru this and keep fooling the doctors.

Icemantoo

alice124's picture
alice124
Posts: 860
Joined: Mar 2012

Like my husband's doctor said, "If you have to have kidney cancer--now is the time to have it. There are new breakthroughs being made every day."

You sound like you are a fighter; so keep fighting and keep the faith. There's a reason you made it through the surgery. So realize what those reasons are and embrace them. Good luck to you and keep us posted on your progress.

kcasper
Posts: 4
Joined: May 2012

Thank you also, alice124. Yes I am a fighter, plus I have a super family headed by my wife whome I call "MY ROCK." She is the reason I continue to fight. Her, My daughter, my son and the rest of my family plus my great friends. That's what it's all about.

garym's picture
garym
Posts: 1651
Joined: Nov 2009

kcasper,

Wow, you had to fight your way into this little club the hard way, but you've made it. There is a good group of knowledgeable and supportive people here that will lend a hand whenever needed even if its just to listen when you need to vent.

We understand,

Gary

kcasper
Posts: 4
Joined: May 2012

Thank you. I'm on my fifth day of this round of Sutent. Hope the news keeps on getting better. I don't look forward to the sores coming back, but it is what it is. We have purchased a new Juicer. Actually it's the Montel Williams device. So when I get my mouth sores again, I'll be drinking my breakfast, lunch and dinner. What ever it takes, I'm game. Thank you all again. I look forward to these great relationships.

Peace and Love.

Linda2010
Posts: 1
Joined: Dec 2011

Hi Sunlover_56 I also had a kidney removed my right because of a mass the size of a baseball on my kidney I had my surgery on feb.11th 2010,, mine was stage 3,, It was very scary,and the anxiety that comes along with just hearing those 3 words you have cancer,,I still have to be checked once a year. but with all the prayers from friends and family I am doing well,,As I am sure you will also. That is the 2nd time that I have heard those words.I was only 28 the first time,and now I am 53 God is Good..I know in my heart you will be healthy again, Have Faith!

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