CSN Login
Members Online: 14

Confused and Need Help

char08
Posts: 3
Joined: Jan 2012

Hello everyone. I was diagnosed with kidney cancer Apr 2011 and finding it hard to make up my mind to get the surgery. I went to the doctor complaining of cramping, stomach bloating, nausea, etc.. A CT scan was done with and without contrast and they found a 3 cm solid mass in the center of my right kidney and a 6 cm complex mass on my ovary along with multiple fibroid tumors. Because it was recommended that I have 2 surgeries, I was advised to have the total hysterectomy first because it could be cancerous also (rough surgery). I was happy when it wasn’t but disappointed also, I believe I had the surgery done and didn’t need to. What if I get the same diagnoses after the second surgery? The tumor (kidney) hasn’t grown since diagnoses. I keeping wondering if the doctors are wrong and it’s not cancer. I had a fourth opinion 29 Dec 2011 and he too said it’s a 95% chance of being renal cell cancer. But, I still can’t wrap my mind around getting the surgery. I have rationalized that I can probably wait another year since this is a slow growing cancer and see if it continues to grow or go away. My urologist has agreed to wait another 6 months and do the CT scan again. I have read many periodical, websites, books, etc. and know about the stages and how long I can wait. Has anyone experienced this and if so, how did you overcome it?

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

Char-
I am one of the few on this board who had a biopsy under ultrasound guidance before I had surgery. In short, they numbed my back and stuck a needle into the tumor. They extracted a small piece of the mass and some fluid in the cyst. This was quick and there was little pain associated with it. They sent the sample to pathology which confirmed I had RCC. After that we set a date to have my kidney removed. You will hear some say that doing a biopsy carries a small risk of spreading cancer cells. My doctor said the risk was extremely minimal and because he was not 100% certain I had cancer he recommended a biopsy. This is an option if you want to be 100% sure you have RCC. I will also tell you that 95+ percent of RCC cases are diagnosed via a CT scan. What you do is a personal decision, but there are ways to test the tumor if you wish to go that route. Hope that helps.

Scott

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

Unfortunately, Scott, it's not quite that simple. The primary reason that biopsy is generally not recommended is not because of the minimal risk of needle track spread but because there is a real risk that the biopsy will give a false result. You were fortunate that your biopsy hit cancer cells and confirmed that it was necessary to have the surgery. It could have missed the malignancy (it's around a 20-25% chance) and then, if you hadn't had the op, the whole course of your future might have been different. Your statement "This is an option if you want to be 100% sure you have RCC." is incorrect and could have regrettable consequences.

Char 08, if you've had 4 opinions and they are all saying the same thing, don't you think it would be wise to take their expert advice? If expert opinion is that you have only about a 5% chance it's not cancer I know what i would choose in your situation!

foxhd's picture
foxhd
Posts: 1875
Joined: Oct 2011

Char, go with the experts advice. This isn't one time where denial will make the problem go away. Just not worth the risk. Early detection and removal is the best chance for a cure. You've got to look long term at this one.

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

Char08, I understand your hesitancy to go through another surgery that might prove to be unnecessary. I remember being hesitant about mine and I hadn't gone through what you did. But the point of having a second opinion is to confirm the diagnosis and recommendation of the first doctor. You've had four opinions and they all seem to say the same thing -- that it's a 95% chance that it's cancer. I heard those same words from two doctors and that was enough for me. My mass was smaller than yours and I knew it was slow growing, but I wanted to be rid of it as soon as possible, and the six week wait for surgery was too long for me. I didn't want to give it time to spread. Now, with one kidney left, I know I made the right decision. You didn't say whether they are talking about a radical or a partial nephrectomy, but that will be an important element in the difficult choice you have to make and I don't envy you. But whatever your decision, make sure you're at peace about it, as difficult as that might be. Good luck,
Mike

icemantoo's picture
icemantoo
Posts: 1480
Joined: Jan 2010

Char08,

I see you are a little reluctant to get initiated into our club. At 3cm your tumor is either Cancer or will become Cancer. The cure rate for those of us with tumors 4 cm or less approaches 100%, As the tumors get larger they tend to metastisise. Those who go from Stage 1 Kidney Cancer (where you are now and where I was 9 and 1/2 years ago) tend to see that 100% survival rate plunge without the surgery as the tumor inevitably approaches Stage 4. Fifty thousand people get Kidney Cancer each year in the US and about 17,000 die each year. You were lucky enough to have your Kidney Cancer caught early. You will get through this with a full recovery if you confront it now. Your chances diminish the longer you wait, We are here to support you and help you thru this and I for one will not take no as an answer from you. To Life. Lets get the surgery behind you.

Icemantoo

char08
Posts: 3
Joined: Jan 2012

I believe GOD sent me to this site. I was told by the doctors that a biopsy was out of the question. I also wanted albalation and was told because of where the tumor was located that it wouldn't work. My procedure will be done at the VA Hospital. They will use the Di Vinci Method and hope for a partial. But was told that where my tumor is located they may have to take it. I know I have to have this done, but it's so hard. I know denial will only hurt me in the long run. After my appointment in June I will schedule the surgery. I'm a small business owner and it's hard to be away from work for an extended period of time. But, I have to do this. Please all keep me in your prayers. As I am praying for all of you. I'm glad to be a member of this club (GOD's Chosen).

Char

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

An ablation was not possible for me either because of the location of the cancer. Its location was also not conducive to a partial.

All of us here are working with the hand that was dealt us.

Your faith will see you through this.
I wish you peace about this,
Mike

tom_in_VT
Posts: 25
Joined: Jan 2012

Char
I too believe angels are amongst us. My latest belief came as a result of the doctors & professionals at DHMC, the place of my 12/2011 surgery. The folks on this board have been touched by similar angels that take great care of us all. My 4.5 mass (right kidney) was removed via open surgery. They gave me a really awesome scar for the beach, small potatoes considering the alternative. When I asked my urologist; where the cancer would spread 1st? He replied, "your lungs." He looked at my charts and said, no one has scanned your chest yet - 3 days later I had another CT concentrating on my lungs.
I too was told "no biopsy" by my GP & the urologist, too much risk they said.
I am happy for you that things have resolved themselves, as much as they have. Get that tumor taken out, recover and move on. Live big after it's over, you'll be a champion whose beaten a terrible beast. Please keep us updated on you, we will all be holding your hand as you navigate this.

Be well - know the angels love you and will take good care of you.

Tom

Gike
Posts: 3
Joined: Jan 2012

Do NOT wait to have surgery! My husband's CT scan showed he had a tumor in his right kidney in 2009. We were told kidney cancer is slow growing so he wanted to wait. Doctors advised either partial removal of the kidney or a complete nephrectomy. He decided to go against his urologists suggestion and he waited. He wasn't sure he wanted to lose a kidney or if insurance would cover the cost. He thought since it was a slow growing cancer he would be fine. In Sept. 2011, he had a complete nephrectomy of the right kidney. The cancer had grown to a Stage IV and involved the renal vein. Recently, he was diagnosed with a "met"(Metastasis) to his lung. but we are told where there is one, more will show up later. Last week he had a CT scan which showed the met in his lung had not grown, however, now he has a mass in his liver, too. We;ll find out the results of the MRI to the liver tomorrow. Since the doctor wanted to see him before his scheduled appointment Feb. 8th, we're pretty sure it's bad news.
IF he had the surgery to remove his kidney while it was small he could now be cancer free! Kidney cancer can be stopped, but only if it's detected and treated early enough. His procrastination cost him his life.. he is incurable. He'll begin targeted treatment (like chemo) with Afinator next week. Side effects are not good. It may slow the progression of the disease, but only by months.. his life is short.
My advice is DO NOT HESITATE ONE MORE MINUTE to treat the tumor in your kidney! You can survive this terrible disease, but only if you remove the tumor and/ or the kidney soon!

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

I'm sorry to hear about your husband's condition. God bless you for caring enough to pass along this advice.
Mike

icemantoo's picture
icemantoo
Posts: 1480
Joined: Jan 2010

Char08,

You were diagnosed in April 2011. Waiting until June 2012 because it is more convenient is playing with fire. Get the bugger out now before it spreads. I have been there and done that. Not fun, but certain things you have to do, not only for yourself, but those around you. My little bugger was 2.6 cm on the CT scan. When they took it out and measures it, it was 4.2 cm. Did it grow in those 10 weeks? Who Knows. CT's are not exact measurements because the view is 3 dimensional. Face the fact that your 3 cm tumor in April 2011 may be larger than you want. Get it out ASAP.

Icemantoo

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

I've had them both as well. I, too, had fist-sized fibroids in my uterus. Good-bye uterus, and good riddance! Easiest surgery I ever had.

And I had a small tumor show up via CT scan on my kidney a few years after the hysterectomy. It was 1.3 cm when we first saw it; just over 2 cm when it was removed. Truly blessed to have spotted it that small so that my cure rate is almost 100%. If we hadn't caught it early, kidney cancer is a nasty little metastisizer.

What everyone has said is true: the sooner the better. The odds are so stacked against you if you wait.

The laproscopic daVinci is top-line surgery. If you're at a hospital that's doing it, that too is a blessing.

I look at it this way: God gave you these gifts (found early, good surgery) for a reason. Don't reject it! : )

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

Char,

Read Gike's post very carefully, there is only one outcome if you wait! I Knew 7 people that died from this before my dx, it is very curable early and very deadly later on. I believe God brought you here for a reason too, now please heed the advice of everyone above, the sooner the better. You are in my thoughts and prayers.

Good Luck and Godspeed,

Gary

NanaLou
Posts: 67
Joined: Oct 2011

I have so much to say about this. The first thing that I thought when they told me I had a mass in my kidney was Get it out of me. I didn't know if it was cancer or not. They were supose to biopsy the kidney and lymp node. They did a biopsy of the kidney only it came back dead tissue. So the next week had to do biopsy of the node. It came back cancer. I feel like we could have skipped the boispy and just cut this out. The first CT on sept 27th showed a 7cm mass. The second on Nov 2nd show a 9.5 cm mass. The size on Nov 18th 11cm mass. They originaly told me it had been in my body for years. Then after surgery said it was very aggressive. I don't know if it had been there for years then became agressive or what. Don't give it the chance to grow or spread. If they take your kidney and find out it is not cancer. Oh well, much better than the other way. This reminds me of a saying that was taped to my old computer when I took over this job. I would rather live my life as if there was a God and Die to find out there wasn't. Than to live my life as if there was no God and die to find out there was. Like my subject says get it out!! I will be praying for you!

char08
Posts: 3
Joined: Jan 2012

Gike, thank you so much for telling your husband’s story. I was wrong in thinking that I had at least a year to work this out. I’m praying for your husband that he will get better. I know prayer works. My father was diagnosed (Nov 11) with lung (stage IV) and 3 legions on his brain. He has been in extensive radiation and chemo therapy and we were told that’s he getting better. They have given him a year instead of the original 6 months. I know that GOD will make the final determination, but it was good to hear. I will get the surgery as soon as possible and keep everyone posted as to my surgery date. I will call the VA hospital on Monday to schedule an appointment (they will be happy). Thank you everyone on the site for the love and prayers that you give to all the club members. May GOD bless and keep Gike, Mike, Scott, Texas_Wedge, foxhd, Icemantoo (our hero), Tom, Jamie1.3cm, Gary, and NanaLou in good health and spirit. Keep blessing them to be encouraging to all of us who are afraid and need guidance. You will always be in my prayers. And Gike, I’m putting your husband up in prayer with my father.

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

Char,

You have made a wise decision, and one you will never regret.

Go forth and slay the beast,

Gary

tom_in_VT
Posts: 25
Joined: Jan 2012

Char,

Good, I am happy you are moving forward. Best of fortunes as you work your way through. We will be here to help as much as we can.

Tom

Minnesota Girl's picture
Minnesota Girl
Posts: 115
Joined: Jul 2011

Char08 - I went through this last May and had my nephrectomy on July 6. I also had a no-incision hysterectomy for fibroids few years ago, not knowing I had kidney cancer at the time. They were not worried I had uterine cancer, but I was taking narcotics every month just to get through my cycle. The hysterectomy relieved all of that.

For several reasons, my urologist really thought I would beat the odds and the mass on my CT would prove to be an oncocytoma, not cancer. He convinced me a biopsy was worth the risk - and insisted on extensive sampling of my 2.3 cm tumor. I asked about seeding or spreading the cancer through bioposy - frankly, he told me that was old thinking. I knew about the possibility of a false negative, too.

I went ahead with the biopsy, but even if the results showed no cancer, I thought I would be worried to "watch and wait" and still might go through with the nephrectomy. On the other hand, I wondered what it would feel like to give up kidney that turned out to be non-cancerous. Probably not so good...

At the end of the day, the biopsy results showed cancer and took away any hesitancy we had about the surgery. While it was shocking to confirm I had cancer, I was glad to know that, without a doubt, the surgery was the right thing to do...

Bottom line, the biopsy helped me move ahead with surgery. Best of luck to you.

LISAinTN's picture
LISAinTN
Posts: 143
Joined: Aug 2011

Hi Char,

When I was dx-ed, I couldn't wait to get the cancer removed. That's all I kept saying was "get it out". I didn't want to give that little sucker one extra day to grow or spread.

I did have an ultrasound guided needle biopsy which, if I had it to do over, I don't think I'd have one. It did show that I had cancer, but now I worry I took a chance on spreading the cancerous cells. If I had it to do over, I think I'd take a chance on having the surgery without the biopsy. If I had the surgery and it wasn't cancer, I wouldn't have looked at it as an unnecessary surgery. I would have looked at it as a preventative surgery and a blessing that it wasn't cancer. Please get this out asap. The sooner you catch it, the better the chances for recovery and survivial. I'm praying for you.

Gike, I'm praying for your husband.

Blessings,
Lisa

Martha_R
Posts: 6
Joined: Dec 2010

I agree with LISAinTN. I was diagnosed with kidney cancer and I had the radical nephrectomy. The biopsy results after surgery were negative - after all I didn't have cancer but I had a benign tumor oncocytoma. Still I think that I made the right decision. They told me that majority of tumors are cancers and I wouldn't risk my whole life on a slim chance that it wasn't cancer. I don't like "wait and watch" approach. You need to be proactive and face the reality.

Subscribe with RSS
About Cancer Society

The content on this site is for informational purposes only. It is not a substitute for professional medical advice. Do not use this information to diagnose or treat a health problem or disease without consulting with a qualified healthcare provider. Please consult your healthcare provider with any questions or concerns you may have regarding your condition. Use of this online service is subject to the disclaimer and the terms and conditions.

Copyright 2000-2014 © Cancer Survivors Network