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So scared!

karalisa78
Posts: 3
Joined: Jan 2012

Not sure that I can really post here, as I haven't really been diagnosed with cancer, however, I'm so scared.

I've been having back pain since beginning of November, went to the doctor in November when they diagnosed me with a UTI. Treated it, and the pain went away...then it came back, took more antibiotics, but pain is still there. Had a CT scan which showed 2.2 CM Mass on my left kidney. Just had a follow up scan with contrast on Saturday and they gave me a 50/50 chance of it being cancer. I have an appointment with a urologist on Thursday.

I have no idea what's going to happen, what I'm facing, I'm only 34 and a Mother of 3 kids. I'm scared out of my mind. Hoping for some reassurance. Thanks in advance.

cww71964's picture
cww71964
Posts: 97
Joined: Dec 2011

Hi,
I know what you are going through as does everyone on this board. I was just diagnosed on 12/4 with a mass in my left kidney but my odds are it is 95% cancer. I am scheduled to have my kidney removed next Tuesday. I am 47 and a father of 4, never really been sick in my life and am told that I am very luck as they caught it early and the chance for cure is high. Mine is 4.5cm and they tell me that is fairly small so yours is half that. Hopefully yours will not be cancer but if it is you should be fine. I was scared and didn't know a thing about kidney cancer but this site has a ton of information and a lot of good people who will support you and provide you with their experiences. I pray you find out yours is not cancer and you don't need to join this club.

Wayne

icemantoo's picture
icemantoo
Posts: 3280
Joined: Jan 2010

Being told you have Kidney Cancer and then surgery to remove it is enough to scare anyone. I sure was when I was told 9 and 1/2 years ago. Masses of 2.0 cm on the Kidney do tend to be Cancer. So what. At that size the surgery alone tends to be a 100% cure. You are coming on this board very lucky. Your baggage (size of tumor) is smaller than practically anyone on this board. While there is hope that it is not Cancer, if it is you should have nothing to worry about. You will make it through this with a full recovery

Best wishes,

Icemantoo

NanaLou
Posts: 71
Joined: Oct 2011

I know it is scarey. I have just been through this. I found out in September. I was 39 with one daugther 4 years old. The good news is if it is Cancer, they have caught it early, because it is small. Try to stay calm and postive. I know it is hard. I cried the entire first day. Read the post here. They will help you be prepared. Read Icemans story. He is a 9+ year survivor. And you will be too. God Bless and take care

NanaLou

msacher63
Posts: 21
Joined: Oct 2011

The best medicine is a positive attitude. Stay focused on everything positive until you have all the facts back. If it is a worst-case scenario, you are still in good shape. The left kidney is the better of the two for this kind of thing and your mass is very small. There are more and more avenues to take every year with this kind of cancer and it's a slow grower so you have time to think about what will work best in your case. Talk to several different doctors and listen to what each one has to say. Your going to be just fine.

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

karalisa78,

Take a deep breath and try to relax, difficult I know. It could be a cyst or something benign, but if it does turn out to be RCC it has been discovered very early and your prognosis for cure is something close to 100%. Its unlikely that your back pain is coming from a tumor which at 2.2cm would be considered very small, mine was over twice as big and still considered small, just be glad you had the pain and they found it this early, most of us are still here because they found it while looking for something else. If they determine that it is a tumor, RCC is very slow growing in the early stages and there is almost no chance a tumor this size has spread. The most effective therapy is surgery and there are a variety of options like robotic (Da Vinci), laproscopic, hand assisted, open, partial and full nephrectomy. You would seem to be a likely candidate for either of the less invasive procedures and a partial nephrectomy IF IT IS RCC and surgery is required. The surgery is pretty straight forward, not a pleasant experience, but a few days in the hospital, and a few weeks recovering at home, then back to "normal" other than follow-up tests and scans every so often for a few years. No chemo or radiation, pretty easy compared to what many must endure to survive. There are a bunch of knowledgeable and supportive people here and we're happy to help any way we can, so post away. In 30 or 40 years you will be able to look back at this with your kids and laugh, I promise.

You are in my thoughts and prayers,

Gary

karalisa78
Posts: 3
Joined: Jan 2012

Sorry, not sure how to reply to everyone, but I would like to tell you all, THANK YOU! You made me cry happy tears reading your responses. I'm being very positive, and know that whatever it is, I can make it through. I really appreciate all the positive thoughts and the "no worries", it's exactly what I need right now! I will update after my appt. on Thursday. Thanks again!!

rae_rae's picture
rae_rae
Posts: 300
Joined: Oct 2010

We look forward to your update. Keep us posted! You will be fine.
Rae

Olsera's picture
Olsera
Posts: 38
Joined: Dec 2011

Hi Karalisa,

I am 35 & was diagnosed with a 2cm mass on my left kidney at the end of Sept., it ended up being 3cm on my pathology report. my urologist gave me a 95% chance it was rcc & it was so I had a radical nephrectomy mid Oct. I am hoping that yours is not cancer however if it is you have early detection on your side, my doctor gave me a 98-99% survial rate. Even though it was a complete shock I am so thankful it was caught early. You are going to be just fine. Good luck with your urologist appointment on Thurs.

live life 4 u
Posts: 25
Joined: Dec 2011

Hi I am 32 with 4 kids.I just went through everything you are going through.My pain started Sept 2011 went to the doc. OCT 1 treated me for a UTI with no labs showing I had one.I was told if pain don't go away then go to ER,and I did on Oct 5 2011 .Ct scan showed the mass and sent me on my way.It was a lot to take in.I had my surgery( left radical nephrectomy ) on Dec 9 at Cancer treatment centers of America. .and doing great.I will pray for you.What are the ages of your children? Mine are 15,7,4,3 (:

karalisa78
Posts: 3
Joined: Jan 2012

My kiddos are 8, 7 and 2. I want to be here for them for everything they will go through in life, and know that I will be.

I am going through ups and downs. Sometimes I'm crying, other times I'm strong willed and fine with whatever it is.

They have done bloodwork, all is normal except a slightly high WBC indicating infection, not sure if that's the case with everyone as well.

Also...I heard if you have a biopsy, there's a chance it can spread...is this the case? Should I just have whatever it is taken out, or should I biopsy first (if given the option)?

Thanks!

MikeK703's picture
MikeK703
Posts: 235
Joined: Sep 2010

Hi,
There is a possibility that it can spread while the biopsy is being taken. I'm sure your urologist will talk to you about all of your options. My urologist did not recommend it because of that. Also, the location of my cancer was precarious, too near the blood source. I ended up taking his recommendation -- a radical nephrectomy -- and I am glad I did.

Here is some more info about the biopsy procedure.

http://www.kidneycancerinstitute.com/biopsy.html

While you're there ... the links on the left side of the page lead to info about the other procedures.

Best wishes,
Mike

live life 4 u
Posts: 25
Joined: Dec 2011

My doctor did not do a biopsy on me.But I also told him no thanks get it out.Have you had any other symptoms? My side and back killed. 4 days after surgery the pain was GONE.You will be okay the kiddos make us strong.Make sure you have family around if you have surgery.The kids don't understand the word I can't hold you (:

LinnRyan's picture
LinnRyan
Posts: 8
Joined: Nov 2011

We've all been there - waiting and knowing is one of the toughest things you'll go thru. Mine was found accidentially mid Oct confirmed mid Nov and surgery Dec 2nd. Ended up having to do cyroblation becuase of the locations and blood supply to the kidney. Still knowing its dead but in there is scary but I have to trust the wonderful doctor I had. All will be fine as everyone assures me and keeping a positive attitude will make it all seem better. Keep the faith and good luck in everything. We look forward to future posts from you for years to come.

tom_in_VT
Posts: 25
Joined: Jan 2012

I'm so sorry to hear your in the boat with the rest of us, it is a terrifying place to be. I too had back pain, sciatica that dropped me too my knees in tears. My doc scheduled an MRI, found a herniated disc lying on my sciatic nerve AND a 4.5 cm "mass" in my right kidney. An incidental finding which I am told is good(?)... Additionally, a fatty tumor was found on my spine 3 or 4 vertebrae above the bulged disc - orthopod guy scared the ever lovin hell out of me, scheduled a biopsy of the fatty tumor which went well as I was told is not a cancerous tumor. I got that news a week b/4 Christmas - I happily cried myself to sleep that night. I had my Kidney tumor taken out on 12/20/11, I have had lots of pain trying to sleep (mostly) - fortunately, I have been able to stay in my PJ's for the past 3 weeks, my wife has truly risen to the occasion. Be scared, it is OK, cry as well - get it out. Lean on everyone who offers help, you will likely need them. Place your faith in your surgeon, he or she is now your best friend and will see you through! Please let us know how everything is progressing.

Jamie1.3cm's picture
Jamie1.3cm
Posts: 188
Joined: Jan 2011

Yours is very much a textbook case so far: kidney mass found while getting a scan for something else. What everyone has said is all true. Yours is a really small mass, these masses usually are renal cell carcinoma, so they dont usually even do a biopsy. With the surgery (total nephrectomy, partial nephrectomy, or cryoablation) done as either an open surgery or laproscopic, the surgery is the cure. There is no chemo or radiation for primary kidney cancer. If you had a large tumor that had already spread, we could talk about some medication to shrink tumors, but that's not the case with the vast majority of us. Most of our tumors are found when they are still small. You can live a perfectly normal life on one kidney or one and half kidneys.

When it comes time to talk you through what to expect from the surgery, we're here for you. And that's your biggest hurdle, thank God. "Just surgery" sounds ironic, but we are so lucky that it is a straightforward surgery and it is our cure.

Texas_wedge's picture
Texas_wedge
Posts: 2799
Joined: Nov 2011

I agree with Jamie. So far, it might not even be cancer but that probably won't affect the advice you get from the experts tomorrow who will likely recommend having the mass removed to be on the safe side, without a biopsy beforehand. This is because for kidney cancer (which is so unlike all other cancers) biopsy is not a good idea. The risk of needle-track infection spread is very small. The really important factor is that with kidney cancer a biopsy can give a wrong answer - by missing the cancer cells and misleading everyone into thinking you're clear when you're actually not.
Assuming you have surgery, you're very young with everything to live for. It's been caught early while still very small. An op. should see you completely cured. The only downsides that come to mind are that you'll be very sore for a day or two after the op and will need the pain meds they'll give you plus the fact that you won't be able to lift the kids safely for quite some time to come - even as a 69 year old man with no grandkids so far, I can imagine how tough that will be for you.
Good luck tomorrow and remember you can lean on us all here as much as you like.

Texas_wedge's picture
Texas_wedge
Posts: 2799
Joined: Nov 2011

Meant to say a heartfelt thanks to MikeK703 for the excellent link

http://www.kidneycancerinstitute.com/biopsy.html

The information given about all the possible surgical procedures is so well-written and authoritative that it should be read by anyone about to join this club.

braswelm
Posts: 41
Joined: Oct 2011

As everyone on here has mentioned, surgery is usually the cure for your situation.
I had a 7.8 cm tumor, and had a radical nephrectomy just 7 weeks ago. I am pretty much back to normal now, and need no further treatments. My urologist says removing the kidney is a 90% cure rate, and with a much smaller tumor, your prognosis should be excellent!
Keep a positive attitude, and stay in touch on here. There are a lot of great folks, with sound advice to keep you up.
Mike

Vagusto's picture
Vagusto
Posts: 86
Joined: Aug 2011

There is nothing like hearing that "C" word. I was driving my car when my doc office called me. Freaked out to say the least!!!!! I have confidence if your ability
to get through anything....because you're a Mom!!! I didn't have a biopsy because my tumor
was large, and there is a history of kidney cancer in my family. I had an open radical, the surgery itself went very well. Loved the epidural they gave me for pain, it worked awesome. I had no pain....until they took it out. (i believe was two days after surgery) Pain was manageable afterwards. Recovery took some time. Post an update after your appt on Thursday.
Take Care
Valerie

Sm4pack's picture
Sm4pack
Posts: 40
Joined: Dec 2011

Hi-
Like the rest of the folks, I was diagnosed with RCC on 12/22, left radical neph on 11/9. I just turned 40 and have two great boys (8,11) and a wonderful wife who happens to be a nurse. I wanted to let you know that the emotions you are feeling are perfectly normal. Being scared, finding yourself thinking about the future etc. are what we think about immediately after diagnosis. Then, we start to learn more about RCC and hear about the great prognosis for folks like us who have been diagnosed early. Things are really positive and you should be around for your kids for a heck of long time. I cried on and off for three days over Christmas. Things got a lot better when we were able to talk to the kids honestly and reassure them that despite events of the next couple of weeks life would return to normal. All the advice on this site is honest and very accurate. The first few days post op aren't a ton of fun but things get better pretty quickly. I know it's hard, but try to look at this whole thing as a gift, especially if it turns out to be RCC. Many folks don't have the gift of early diagnosis.

I'll be praying for continued strength for you and your family.

Scott

Texas_wedge's picture
Texas_wedge
Posts: 2799
Joined: Nov 2011

Good post Scott - very nicely expressed. So glad it's turned out so well for you and your family

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

Karalisa, you have reached out and we are here to hold your hand. There is a lot of positive energy here. Take as much as you need.
Fly
(fox loves ya)

flatlander's picture
flatlander
Posts: 46
Joined: Dec 2011

At 39 i have three Kids under 6.... As my schedule for work sends me away for long shifts I end up home for long times too. That means i often spend more time with them than my wife. When i had a similar find before thanksgiving all I could think about was my Kids not having a Dad. Who would threaten the boys who date my daughter etc...?
One night in the hospital a nurse came in and liked my tattoo of sacred heart. She had a similar prayer
Card taped to her Iv cart. I said wow your photo id is old or youve lost a lot of weight. She told me she has been fighting cancer. I hugged her and we cried. I asked her if it was gone. Her answer was 'i dont know'... That not knowing can kill faster than cancer. As she told me, let go of the fear, trust your MD, your God or whomever... What ever you do let the fear go, it will eat you.up. we are lucky as if caught early like yours and mine, we have a great chance at life. Others have odds that are overwhelmingly ugly.

shawly56
Posts: 1
Joined: May 2013

I have slipped a disc and the MRI also found a 7.8 mass on my left kidney.

So far it has not hit home and the posts here have given me some ideas on what to expect.

My Wife is very upset and the 2 kids so far are not aware until I have seen the Doctor for the Kidney issue tomorrow.

I will post an update after my visit because I am sure I will asking on here further questions.

thanks all.

regards,

Shaun.

 

metal_rabbit
Posts: 13
Joined: Apr 2013

My story is similar. They found a 9cm mass on my left kidney in January, by accident through an ultrasound. I had the entire kidney and the tumour out middle of March (4.5 hours open surgery, very pretty long long scar) and am just on the last stages of recovery. Mine was stage 2, so by removing the kidney and tumour, they are pretty sure they got all of it.

The scary part was the not knowing, it really was for me. Once I'd seen the ct scan (ugh, horrid mass where my kidney should have been), the surgery got scheduled and I was out of hospital less than 3 days later. It then takes a while for everything to sort itself out (like bowels etc), but each day / week is noticeably better.

My doctor said at the beginning that if she had to choose a cancer, it'd be renal (or testicular, which I'd rather not have, thanks) and she's been proved right.

Post here what your consultant says and we'll throw our advice and experiences in your direction.

But, as the subject says, try not to over-worry at this point; it's been caught early and everything should be fine.

Be strong

Peter

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