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Does the size of the tumor matter?

gthufford
Posts: 34
Joined: May 2009

Hello,

My wife was diagnosed last May 2008 with a very large tumor which turned out to be kidney cancer. It turned out to be 22 cm in length, 8 cm in width and weighed in at 5 pounds. According to the surgeon - this is a "remarkable" tumor. Because of the size of the tumor, it was declared a stage 3.

The cancer had broken the capsule (a very painful experience for my wife), but the surgeon said that he got clean borders and none of the lymph nodes that he removed showed any signs of cancer. The surgeon even told use that there was no need to consult with an oncologist after the surgery.

We did not take that advice, and we have been seeing an oncologist who got us on a clinical trial for either Sunitinib (Sutent) or Sorafenib - called the Assure Trial. We finish up that clinical trial (at least the drug part) in August, 2009.

So far, we are cancer free (thank God!), but my wife is deathly afraid that the only reason we have not had a recurrence is because of the clinical trial, and that we have a high liklihood of it coming back. Part of her reasoning for thinking this way is because the tumor was so large and aggressive. I say aggressive only because it grew so large so quickly - not because it spread, which it did not. However, it grew so quickly that if actually fractured one of my wife's vertebrae!

We, of course, have asked the oncologist and the surgeon, but really don't get an answer as to whether or not the size of the tumor really matters. Does anyone out here have an opinion on this?

gthufford
Posts: 34
Joined: May 2009

Any advice/experiences out there?

imbkuz
Posts: 52
Joined: Apr 2009

You haven't said what type of cancer...clear cell, papillary, chromophobe, etc. What is the Fuhrman grade and does it have sarcomatoid features. These are crucial to ask your oncologist. Also is she seeing an oncoogist that specializes in renal cell carcinoma.I'm assuming she is since she is in a clinical trial but I never like to assume. There must be a reason they put her in one. I hope that she is doing well.
God Bless

corey50
Posts: 73
Joined: Feb 2009

hi,
i have to admit i don't know much about this area.
i think though that the size doesn't make that much difference, especially if it hadn't spread.
some small tumors grow quickly and spread and some large tumors never do. drs. call these "gentle giants".
my mother had colon cancer twice 23 1/2 years apart. the first time tumor was the size of grapefruit and hadn't spread, the second time was smaller under 2cm yet had spread to lymph nodes. when i asked dr. he said it was aggressive. she is cancer free again 6 years later, by the way.
so my point is i dont' think size matters. but i'm not an expert. keep looking for information from dr.'s or medical experts. but don't be frightened by what you read on the internet, take everything with a grain of salt. everybody's situation is different. and there are alot of factors, some dr. don't even understand.
please tell your wife i'm wishing her peace of mind and strength to endure this scary time.
when i pray, which is alot, thats what i ask God for, peace of mind and strength to endure whatever comes my way.
hope this helps

gthufford
Posts: 34
Joined: May 2009

Thanks for the info - and the practical advice from experience. I'll find the right time to share it with her. God bless you.

axelson
Posts: 4
Joined: Sep 2006

Hello
I just wanted to share that three years ago I had my right kidney removed, and the cancer was staged as 3 due to the size of the tumor; no lymph node involvement, clean borders. I also went on a clinical trial but am 100% sure I received the placebo. Good news! I am still cancer free! I know how you feel---the first year I was a wreck, the second somewhat less so, and now I hope I'm not over confident, but I find myself thinking less and less about it; only at scan time does it really affect me. My surgeon and oncologist (I was also advised not to see one) always felt confident but of course I felt they were just trying to make me feel good. The websites on kidney cancer were a downer for me; I was convinced because of the size of the tumor I was doomed. My oncologist finally insisted I get the H--- off of the computer. I rarely log in anymore; once in awhile like tonight. Hope this helps. Take care.

gthufford
Posts: 34
Joined: May 2009

Thank you - love to hear good news!!! I hope we have a similar story 2-3 years from now.

axelson
Posts: 4
Joined: Sep 2006

Hi Again,
Both you and your wife have been on my mind. One more thought: you commented to another responder that you would be willing to pay for cat scans more frequent than annually. I'm assuming your wife had them quite often on the trial; mine were every three months for a year.Then because my oncologist was tuned into my stressing out, for the past two years I have had them every 6 months. Insurance has not been a problem, as long as the oncologist ordered it, the insurance paid. I started with an HMO and after two years switched to a PPO just so we didn't always have to go through a preapproval process. So, I suggest talking to your wife's oncologist. Peace of mind is priceless. God Bless and take care. PS At my third year check-up in May, I chose to have the scan annually, but I was given the choice; needless to say, my oncologist is very special, looks at everything from a body, mind, spirit perspective--also priceless!

gthufford
Posts: 34
Joined: May 2009

Great to hear this - I spoke with my wife last night about all of this, and she seemed very receptive. She is very happy with her oncologist, and does not want to think about changing, but will speak to him about more frequent Cat Scans as soon as this clinical trial (Assure with Sutent) is over.

Our next Cat Scan is scheduled for Sept, and we will try to get another one approved and scheduled for 6 months later, and then one in Sept 2010. From that point, we can decide whether to do them every 6 months or every 12 months.

While she has not been all that receptive to talking to me about these issues, at least she knows that I care and am trying!

Thanks for thinking/caring of us.

Rob FWNJ
Posts: 20
Joined: Dec 2008

I was diagnosed with Clear cell RCC March 2008 and underwent a radical nephrectomy on my right kidney. The tumor was 16.7cm x13cm x 11cm. The pathology report showed that the tumor stage was pT3b and it was (Fuhrman) grade 4. It was classified as “High Risk”. Before my follow up to remove the staples from the surgery my surgeon called and gave me the news and strongly recommended that I consider going on a Sutent study due to the high likelihood of my cancer returning. I have finished the study and feel pretty good but I am realistic that the chance of going 5 years without a reoccurance is about 33%. To more directly answer your question is was a combination of several factors that classified my cancer as “High Risk”: It’s size, it’s stage, the fact that the tumor had sarcomatoid features. My very strong recommendation is that you see an Oncologist that specializes in renal cancer at a hospital that is considered a cancer center of excellence. You and your wife must be fully informed about your wife’s cancer so that you can fight for the best treatment. Being second (and maybe 3rd ) generation having this awful cancer I can tell you first hand that there is a huge difference in the way hospitals treat this disease. I live near New York City so I am being treated at MSKCC. I wish your wife the best and will be thinking and prying for her at church today!

Sincerely,

Rob

gthufford
Posts: 34
Joined: May 2009

Rob,

Thank you for your response. I just have a few questions for you:

1) My wife is convinced (based on side effects) that she is on the Sutent. When we are done, we will have been on this for 1 year (9 6-week cycles). Besides doing this, is there anything else that we could be doing to prevent a re-occurance? She is a non-smoker, is in good shape, is young (will be 40 in August), and has no family history of kidney cancer. I have already suggested that we get CT scans every 6 months rather than every 12 months and just pay out of pocket, at least for the next couple of years.

2) Were you open to suggestions for help? My wife is pretty tough on this subject, and really does not want to hear anything from me. I suppose I could start with finding a good center on Kidney cancer, and let them take the lead from there.

3) Where did you get your 33% figure from. Our oncologist told us that we had a 5% chance of re-occurance, but this was a very general stat. You are saying that your's is mor this a 77% chance that it will re-occur.

Also - any idea of how to search for a hospital that specializes in Kidney Cancer? We live in Denver, but I would be willing to go anywhere that I could get my wife to. Money is not a consideration.

Thank you so much - I look forward to reading your next post.

imbkuz
Posts: 52
Joined: Apr 2009

If you go to www.kidneycancer.org they have a nurse information line where they can give you names of doctors, facilities, etc in your area or elsewhere. There are a few well known centers for this type of cancer.Good luck and God Bless. Your wife is very lucky that she has someone proactive for her.

imbkuz

donna_lee's picture
donna_lee
Posts: 398
Joined: Feb 2009

A friend in the Cancer Support Group had a 13# "watermellon" removed 11 years ago. It was still encapsulated but the surgery caused circulation problems in the intestine and she had to have 10 inches of it removed. She's down to one CT scan a year. Other than being in her late 70's, having diabetes, and a few other problems related to age and a recent fall, she's doing OK.
Donna

Rob FWNJ
Posts: 20
Joined: Dec 2008

I'm so sorry it has taken me a couple of days to respond. I am currently in Austria on business and it is tough to get on the internet here. Below I have a couple of answers and a little more of what I am currently experiencing. I hope they help:

1) My wife is convinced (based on side effects) that she is on the Sutent. When we are done, we will have been on this for 1 year (9 6-week cycles). Besides doing this, is there anything else that we could be doing to prevent a re-occurance? She is a non-smoker, is in good shape, is young (will be 40 in August), and has no family history of kidney cancer. I have already suggested that we get CT scans every 6 months rather than every 12 months and just pay out of pocket, at least for the next couple of years. Unfornately I don't think so other than making sure that your wife consistantly goes for her oncology appointments and has her scheduled CT scans.

I must admit I have been and will continue to receive CT scans much more often than your wife is scheduled to. Since my cancer was diagnosed as high risk (and I participated in a Sutent Study) I have received a CT scan every 3 months. I will continue with this until 3 years after my surgery. Afer this point until year 5 I will recive a CT scan every 6 months then once every 12 months for the rest of my life. You may want to ask your wife's doctor what metric is used to determine the frequesncy of CT scans. My Next fun and exciting scan is later this month.

2) Were you open to suggestions for help? My wife is pretty tough on this subject, and really does not want to hear anything from me. I suppose I could start with finding a good center on Kidney cancer, and let them take the lead from there.

Most large cities have Cancer centers of excelence but the Kidney foundation's website as was suggested in another reply might be a good start. I will look for some suggestions and get back to you. Is your wife comfortable with her current team?

3) Where did you get your 33% figure from. Our oncologist told us that we had a 5% chance of re-occurance, but this was a very general stat. You are saying that your's is mor this a 77% chance that it will re-occur.

Statistics are VERY scarry stuff. One tool I have used is the Renal Cell Carcinoma Nomogram which predicts re-occurance. PLEASE be very careful if you choose to use it. http://www.mskcc.org/applications/nomograms/Renal/PostSurgery.aspx
You should to talk with your doctor prior to using it. Remember that this tool will not take into account every factor especially the Sutent your wife took. In my case my doctors were very frank with me.I also have spent maybe too much time digging through other statistics as well as articles that specifically discuss RCC similar to mine and unfortunately they all concur but I'm hoping to be part of the 33%.

I hope this helps a little! Please let me know if I can be of any help and please keep me up to date with how she is doing. I will be thinking of you both and praying for you both as well.

Sincerely,

Rob

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