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margins after tumor removal

VeryAnxious
Posts: 67
Joined: Sep 2010

After visiting my surgeon he told me the cancer was a stage 2, and not to worry. He did not get clean margins since it was actually lying of the renal artery and there was no way to get them. But he did get it all.
Has anyone heard of this. Gosh I was hoping for better news and I know this sounds selfish, but since June this has been a nightmarish ride. I have other health concerns.
I need to get a chest xry for shortness of breath and in 3 months blood tests for the kidney function (he hopes it is at about 40 45%) and a renal nuclear test. I am so confused. I don't if I should do anything or just worry. I have little family support.

Von55's picture
Von55
Posts: 57
Joined: Aug 2010

Hi! No wonder you're feeling anxious- it sounds like you have not received any clear info from your surgeon. Did you have a radical nephrectomy? Are you able to get an exact report from him/her with all the info you need? If there are no clear margins & the cancer remains in the renal artery, why did he say that he "got it all"? I think you really need to ask more questions, and keep persisting if you don't understand- so often a doctor will speak in terms that don't make much sense to a layman. Can your referring doctor explain the report to you? Often a GP is the best one to talk to as they experience patients as people rather than clinically & surgically. It's your right to know what's going on in your body, so don't despair- ask questions!
This surgery is a major operation and it's really important to let yourself heal- anxiety will delay the process and make you miserable. You'll be having tests soon and if anything is wrong it will be picked up and dealt with, just as your RCC was. There comes a point where we just have to trust that we'll be ok- with this surgery, usually the cancer is gone totally. This can be hard to accept, but if your cancer really is gone, believe it, and rejoice!
In the meantime, find out as much as you can- the unknown is much more frightening than the reality. All the best to you, and I hope you find the peace you're needing!
Von xx

VeryAnxious
Posts: 67
Joined: Sep 2010

thanks so much for the reply. I am awaiting the pathology report. I had a robotic partial nephrectomy. He told me the tumor was lying on the renal artery. I am going for a chest x ray tomorrow since I am experiencing shortness of breath.
I am so wrung out. When u say report, are you talking the pathology report? So I am guessing this is unusual for this kind of surgery?
I feel he gets upset with me asking questions, but it is probably me. No one really understands in my family. I will get the report and ask more questions. thanks

Von55's picture
Von55
Posts: 57
Joined: Aug 2010

Yes, wait 'til you get a look at the path report- my doctor's the same, he gets really curt and impatient & I feel like a bit of an idiot! He almost implies that I'm doubting him, but I guess that attitude comes from his surgical training- he has to be precise & decisive when he's operating, with no room for hesitation or fumbling around. I still don't have any info on my operation yet (it was an open partial, 3 weeks ago) but I'm guessing that if there were positive margins or mets then I would be scheduled for an earlier appointment with him than one for 6wks after the Op. That's what I'm hoping, anyway!
I'm sorry that your family are not more understanding- that's where forums like this one, and your friends, can really help. There are a lot of us in the same boat- this is quite a rare form of cancer (less than 3 per cent of all cancers) but people are always willing to help another going through the same thing. In the US you have some great kidney cancer websites- worth checking out for some in depth explanations of this beast.
Take care

VeryAnxious
Posts: 67
Joined: Sep 2010

Well I wish you good luck and am sure if after 3 weeks you have not heard anything, that is good. You are doing well for an open partial. Mine was robotic. What you said about the feedback from your surgeon sounds so familiar. I do wonder if he thinks I am doubting him, especailly since he was very emphatic when he said "I know I got it all".
I guess it would have been so much easier if I were have been able to get clear margins had it not been lying on the vein. I just need to be positive thanks again. and good luck. So I am guessing 9 weeks is when you have a newxt consult after surgery. What country are you in/ I see mine again in 3 months> darlene

pbjoseph1
Posts: 10
Joined: Aug 2010

I had my surgery Sept 23rd. My tumor was also lying on the renal vein. When the surgeon was done with the surgery he told us twice that when the pathology comes back to not expect the margins to be clear because of this. When he called with the results the pathologist determined the margins were "close but clear." I don't really understand the explanation that was given, but the surgeon assured us that he got it all, just like yours did. I had a 2 week followup visit, and then go back in 6 months for scans.

VeryAnxious
Posts: 67
Joined: Sep 2010

Can't thank you enought for your reply. I guess that is what happens in that location. I just hear all of these other cases, but I just need to accept mine is different. What type of scan do you have. I go back in 3 months for my renal scan. Were they able to save most of your kidney. Becuase of 66 minutes clamped, mine will be happy with 40-45%. thanks again and take care

pbjoseph1
Posts: 10
Joined: Aug 2010

The surgeon said I have 80% of the kidney left. I will have an MRI of the Abdomen and a chest x ray in 6 months.

Von55's picture
Von55
Posts: 57
Joined: Aug 2010

I'm in Australia! I had my surgery in a great regional hospital north of Sydney, and my specialist did the Op- under Medicare the whole thing was free; so fortunate! I really want to ask him all the details- where the tumour was exactly, how big, what kind, what margins, why he took the adrenal gland, did he remove a rib etc. In Australia it's usual to do laproscopic radicals, but open partials because of the difficulty in preserving the remaining part of the kidney etc. An open partial might be the "Gold Standard" but a 16" incision hurts like crazy and takes ages to heal.
3 months is a long time to wait for your appt, esp if you're anxious. Hopefully you'll be able to talk with other people on the forum who've had renal vein involvement, and they'll be able to put your mind at ease. Knowledge is power!
All the best, Von

VeryAnxious
Posts: 67
Joined: Sep 2010

Thanks and sounds like you are doing well. Mine did have positive margins and of course the surgeon explained. He also removed some benign cysts and fatty angio. I just am wondering am I panicing unncessarily (as my family thinks, I can not even talk about it with them) or should I be pro active and if so what do I do. Go somewhere else or just wait for the 3 months. I want to be positive, but after all i have been trhu and reading others posts, it is hard. thanks for all your help

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