To RCC survivors & families: your input appreciated

Texas_wedge said:

Inputs
The choice of option has to take account of the individual's general health. Your medical history may tip the balance in favour of surgery, particularly if you're going to worry yourself into an early grave if you don't have surgery.

However, you don't even know that you have cancer - you're jumping to conclusions. You had a CT scan in May. Why did the first urologist refuse another CT straight away and suggest waiting another 4 months. Did he explain?

You say:

"who knows what could happen in that time. I read one post on here from 2010 where someone said if mass was small active surveillence is all that is needed it could be needless surgery if you had surgery done. I dont believe that for one minute."

You chose not to believe it but, for anyone in otherwise good health, it's the correct, responsible, expert advice and is the procedure approved by top kidney cancer specialists at this time. With a 2 cm. tumour - tiny - nothing much would be likely to happen in 4 months, the chances of spread are negligible. The time to opt for surgery would be if a scan in a few months time showed a suspicious change. As it is, the tumour may be benign. The tumour might have shrunk (or even disappeared) or not have changed in any way, in which case continued surveillance would probably be best.

Your second opinion doctor was also suggesting a further CT in a few months time but it seems you didn't want that and you're jumping the gun without any grounds, apart from panic. Why did the second opinion doctor also decline to do another CT - did(s)he give an explanation?

I could understand your rush to get surgery if you had had another scan which suggested it was necessary but without it - ? (The cut-off point the experts use is 3cm. which is more than three times the volume of your tumour. Below 3 cm. the indication is for surveillance, not treatment.) You haven't even had a diagnosis yet!

If your lesion turns out to be RCC then its removal will surely help you cope better with your other health problems. I just hope it doesn't turn out that, on top of your other problems, you're putting yourself through unnecessary surgery.

Anyway, you've got the surgery set up, so I hope it goes off really well for you. Don't be too scared - almost everyone here (some here are carers, not patients) has got through it fine and are here to tell their tales. Your tumour is minute - we had a young man on recently who was just about to get married and had a tumour many hundreds of times the volume of yours. Your operation will be a lot easier than most of us had and although it's very sore for one or two days afterwards, you'll sail through it.

So, all the best for the 28th!

inputs
Thanks for ur input the first urologist did not want to scan again due to radiation exposure is all he talked about. He said yes thre was something there but people are exposed to too much radiation. As for the 2nd doc he said looking at MRI and the enhancement of the solid tumor septations present. He never encouraged me to wait 3 months, he was just saying that sometimes if u wait the suspicious i should say tumor could spread and then there is no cure. He said on Bosniak scale i was 4. Only when taken out and under pathologist will the diagnosis be known of most tumors. My second doc said he did not need another scan since the MRI was recent late June. Im not want ing to have surgery at all . I feel u make it sound as if I cant wait for this to happen. If urologist and oncologist and radiologist believe this is RCC then why shouldnt I think it is so. I never came on here to be put down. I came for encouragement and got that til now. Sorry, I wasted your time.

brea588 said:

inputs
Thanks for ur input the first urologist did not want to scan again due to radiation exposure is all he talked about. He said yes thre was something there but people are exposed to too much radiation. As for the 2nd doc he said looking at MRI and the enhancement of the solid tumor septations present. He never encouraged me to wait 3 months, he was just saying that sometimes if u wait the suspicious i should say tumor could spread and then there is no cure. He said on Bosniak scale i was 4. Only when taken out and under pathologist will the diagnosis be known of most tumors. My second doc said he did not need another scan since the MRI was recent late June. Im not want ing to have surgery at all . I feel u make it sound as if I cant wait for this to happen. If urologist and oncologist and radiologist believe this is RCC then why shouldnt I think it is so. I never came on here to be put down. I came for encouragement and got that til now. Sorry, I wasted your time.

inputs
No need to apologise! My remarks were based squarely on what you told us. You didn't mention that you'd had an MRI scan in June, nor that all of your doctors believe you have RCC, nor that the second doc said you're Bosniak 4, nor that any of your doctors had actually recommended surgery (so I'm also sorry you wasted my time).

However, now that we know more of the facts which you didn't mention (you also didn't mention your age), then it's obvious you've made the right decision to go for the op. and, once again, I wish you all the best with the surgery and I again encourage you not to worry too much about it - you'll be fine.

Texas_wedge said:

inputs
No need to apologise! My remarks were based squarely on what you told us. You didn't mention that you'd had an MRI scan in June, nor that all of your doctors believe you have RCC, nor that the second doc said you're Bosniak 4, nor that any of your doctors had actually recommended surgery (so I'm also sorry you wasted my time).

However, now that we know more of the facts which you didn't mention (you also didn't mention your age), then it's obvious you've made the right decision to go for the op. and, once again, I wish you all the best with the surgery and I again encourage you not to worry too much about it - you'll be fine.

input
Sorry guess i didnt include the lastest scans and information i c where u r coming from. I am a Rn and i have seen so very much in 20 years of nursing that when something like this happens with a new tumor I guess as a nurse i do panic more . I am 56 years old with cardiac history and lung disease. I have a disease of the lungs called bronchiactisis where the airways collapse when lung infections occur and was just diagnosed in april with that. I lost airways in lower right lung and on antibiotics one a day for rest of life. That is one of the reasons the docs are ready to do this now. If I should wait I may not be able to have the surgery at all as my lungs are stable at this time. Im sorry i never meant to insult you and thanks for wishing me luck.

Texas_wedge said:

input
Thanks for your gracious reply. As InfoLady commented, we're all here to help each other the best way we can.

With all the grisly things you RNs have seen, anyone can understand why you'd be more worried than us laymen/women! With your medical history, having the surgery now is a no-brainer and, caught early, with the procedure they're doing, it shouldn't be too traumatic.

Wouldn't it be a nice surprise if it improved your overall status? I guess that careful management of pain meds to allow you to breathe as well as possible after the op will be crucial, but you and your docs will know all about that and have it well under control.

We'll all be thinking about you and looking forward to a good report as soon as you feel up to it after the 28th.

input
Thanks for ur reply. It would be a wonderful thing if it did improve my health. As for the pain meds doc has already told me I may be on a vent for awhile after surgery although they are going to try to avoid this with meds during surgery. Tex this is why i am so afraid. The surgery will go ok it will be post op if I have problems. But again I have a plan with lung doc to give me good bronchodilators and manage airways during surgery and hopefully with all of you thinking about me it will help tremendously. Thinking of you too as you travel this journey. Thank you

foxhd said:

scans
Boy, a ways back it was asked about getting too many scans. I am beginning to worry about the 6 week frequency that I get my chest, abdomen and pelvis scans. I handle the contrast well but the radiation worries me. On the other hand, as part of my trial protocol, I would not have argued about it 6-8 months ago. I will discuss it with my Dr. but she doesn't run the study. As soon as results are at their best, I'm sure changes will be made.

scans
Well, fortunately, we now have another expert on board who, I'm confident, will be keen to help a fellow medical professional - I don't suppose it'll be long before medscanman picks up your question. (Funnily enough, I'm wishing my next scan was coming sooner - a bit of abdominal discomfort/pain that's new and next scan will doubtless give the answer as to whether or not it's significant or just a part of the healing process that many of us seem to go through.)