surgery or not

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surgery or not

by Lindaca on Tue Apr 21, 2009 12:00 AM

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Hi,

My mom has stage IV RCC with mets in lung, diagoniszed on Oct 5, 2008.  She is on 5th cycle of Sutent now. Her tumor didn't shrink, didn't grow either. The doctor did not recommend surgery in the begining. Now the oncologist recommend to go for surgery.  Our hope is to remove the big tumor to let the medicine work better.

Our scare is this is a high risk surgery with heart together. We were told about 6 month back to Oct 2008, but she is doing well now. We don't know if surgery will really benefit her. What about post operation treatment? Will the surgery extend her life longer? What's the chance of reoccurrance of cancer after surgery? Does it worth to let her suffer so much from the surgery as she will probably be in ICU for a while after sugery? Or maybe it's a good idea to continue on Sutent till tumor shrinks, to go for operation.

Anyone has similar experience or any advice or information about surgery treatment, please help to give some useful information. We don't know what to do now.

Thanks for your help.

Linda

 

RE: surgery or not

by Richard2 on Wed Apr 22, 2009 12:00 AM

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Dear Linda,

My situation sounds similar to your mother's. I was diagnosed in Oct. 2005, and started Nexavar, then Torisel, and now Sutent for over 1 year. My tumors have never shrunk, but have remained stable. My oncologist did not reccomend surgery. He said the latest studies showed it did not have any effect on extending life once the cancer had spread to other organs. My cancer was stage 4 with mets to my lungs. I was so relieved to avoid surgery that I never questioned him or asked for a 2nd opinion, but it seems from people's experience on this site that almost everyone has the primary tumor removed, and then starts drugs. So now I am wondering if we did the right thing. I would be interested in hearing other opinions on this subject.

Richard

RE: surgery or not

by UKSteveK on Wed Apr 22, 2009 12:00 AM

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Dear Linda

I was diagnosed with Kidney Cancer and mets on the lungs and bone in the ankle on 27th December 2007. The tumour in my ankle was so large I could not walk and required crutches. My Oncologist decided against surgery initially but put me onto Interferon. I was on this for 4 months and it successfully reduced all of my tumours. 

My CT scan in September showed the primary tumour was reducing in size and at the end of January his year I had my kidney removed. The biopsey of the kidney showed the Intereron had completely destroyed the tumour there. Next month I have my first scan since the surgery when I will find out if their are any remaining signs of the cancer. 

Before the surgery I met the surgeon and Oncologist and they advised me that I had the kidney removed as if the primary is removed sometimes the mets will die.

 They can often remove he kidney with keyhole surgery and it wuld be necessary to take it easy for a few months afterwards. Mine started as keyhole but due to a problem they opened me up with a 7" incision. I started full time work 3 weeks ago but still ache if I try to do to much.

 I hope this helps you to make an informed decision.

Steve

RE: surgery or not

by JulieUK on Thu Apr 23, 2009 12:00 AM

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Yes, the standard procedure for Stage IV is to remove the primary wherever possible, and then tackle the mets (usually with drugs, but sometimes by surgery or other 'physical' techniques such as ablation - if they are the right number, the right size and in the right place).

Usually the primary is only not removed if the patient is too weak for surgery at that time, there are other health complications that would compromise surgery, or the tumour has grown into places that make surgery very risky (I read here a while back about one patient who had two surgeons - one renal one for the kidney and one cardiac surgeon for where the tumour had grown up veins and arteries!)(and the surgery was successful, it's great to say).

In that case the patient is put on drug therapy first to seek to shrink the primary and/or get them 'well enough' to undergo surgery (which can happen very successfully, as Steve and I know others here can testify).

As to whether surgery improves what happens with the mets, my husband was told that pre-Sutent et al, the data showed an improved outcome for patients when the primary was removed, but that there was not yet enough data in for the new drugs like Sutent to be able to call it one way or the other.

I think in each case it's essential to try and find out what the onc actually thinks is the likely outcome for each patient. ie, is the onc saying 'we won't take the primary out because we think you are doing fine as it is, and drugs are holding you stable and keeping you alive, so why rock the boat?' which is arguably very reasonable thing to say OR - and this is what you have to watch out for, in my opinion! - is the 'subtext' of the onc not recommending removing the primary actually 'You're a gonner so why bother?'

That's unacceptable - ie, unacceptable for the onc to make that call. The patient can make it if they want, and many patients do decide not to undergo 'horrible' treatment but let the cancer take its course. However, surely no patient should take that decision lightly, or, in particular, without at least one other 'second opinion' from another oncologist.

Oncologists DO vary in how they view their patients, what they think their chances are, how prepared they are to lose patients without a maximum fight, how ready they are to accept death sooner rather than later (for the patient, that is!). It can be very personal, I feel, depending on the oncologist's inner character.

 But, in my opinion, in the end it is NOT the oncologist's decision to make - it is the patient's, because it is the patient's life at stake. Their life, their call.

Which is why each of us needs maximum information - and from several sources (some oncs do NOT like being challenged or questioned!!!!!).

As to the severity of the nephrectomy surgery, that depends on lots of factors, such as, obviously, the age and overal health of the patient, and also on the location and size of the primary tumour. My husband's had grown so large that it was eating into his liver and his diaphragm, so it was, yes, major surgery indeed (brilliantly done!), and because cutting out a piece of the diapghram went into the lung cavity, he ended up in ICU for several days with a lung drain.

However, his overall state of health for a middle aged man was extremely fit, and he was well enough recovered to drive himself home on the Friday after having had the surgery on the Monday evening.....He was mobile at home again very swiftly, out for walks and cycle rides, and went on a windsurfing holiday within two months....so yes, major surgery, but an excellent recovery. (Very sadly, the brain mets carried him off by Christmas, but that's another story)

 

All the very best, whatever treatment option you go for.

Julie.

RE: surgery or not

by Subob on Fri Apr 24, 2009 12:00 AM

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Linda, I was just posting an update under renal cell when I thought I would also check for kidney cancer updates.  I am posting this update under both in hopes to encourage others.  Initially in 2001, my husband was diagnosed with Stage IV Renal Cell to right forearm and right kidney.  Right radical nephrectomy was done in 9/2001, removing right kidney and a grapefruit sized RCC tumor.  It was a tough surgery but successful.  Most recently, the cancer came back in his brainstem.  On 9/11/2009, he was given 3 weeks to live if he did not do Whole Brain Radiation Therapy (WBRT).  WE DID NOT CHOOSE WBRT as we were led to do CyberKnife instead.  The big difference is the amount of radiation it takes to kill renal cell cannot be done with WBRT but can be targeted directly at the tumor using CyberKnife technology.  Here is the update:

4/2009 MRI Update

CyberKnife (stereotactic radiosurgery) to 2 brain mets both in the brainstem (pons & cerebellum) inoperable.  Outpatient CyberKnife treatment Sept and Oct 2007

After 18 months - Results show both tumors have shrunk by >70% and no new tumors

Patient is now 58 years old and has some impairment to right side of body (radiation toxicity) taking Neurotin for nerve pain but able to walk, swim and snorkel, hopes to again play tennis one day.  Was originally diagnosed with Stage IV Renal Cell in 2001 and given 3 weeks to live in 2007. 

We thank God for prayer and for leading us to CyberKnife, Subob (wife)

RE: surgery or not

by Lindaca on Fri Apr 24, 2009 12:00 AM

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Hello everyone,

Thank you for your reply and information about my question. Yes, my mom should decide if she really want the surgery. We just don't know what's the outcome will be, or nobody can predict, even the oncologiest. Not all urologist surgeon can do this surgery. Does anyone know a good urologist surgeon in your states of US? We plan to seek a 2nd opinion maybe fly to MD Anderson Cancer Center. Is anyone familar with that center?

Thank you for your help.

Linda

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