Renal Cell Carcinoma (Kidney Cancer) Support Group
Renal cell carcinoma, also known by a gurnistical tumor, is the most common form of kidney cancer arising from the renal tubule. It is the most common type of kidney cancer in adults. Initial therapy is with surgery. It is notoriously resistant to radiation therapy and chemotherapy, although some cases respond to immunotherapy.
Hi - I am quite new to this forum and have read through quite a lot of the posts and added a couple of replies (which I hope help). My own situation appears to be different from most of you on this forum because although I am suspicious for renal cell carcinoma they will not be sure until my kidneys have been taken out and tested (2nd November D-Day). Mu urologist has also advised there is no sign of spread so that is great news, although I know some of you were also told this then found out in check ups that it had spread.
I just wanted to say how amazed I am at the calmness and sincerity of the messages and replies, especially when some of you are living with long term illnesses with no real solutions, and probaby also living one day at a time. It is absolutely remarkable to see such strength of charcter to help others when you yourselves are in need and dealing with all the pain, frustration, fear and confusion that goes hand in hand for everyone who has a family member suffering.
Like I said before my situation is different as I do not have confirmed diagnosis and although I am worried about what that might be I feel that having 'heard' you all discuss these different drugs and trials available that all is not lost as I previously thought. I am realistic and know that everyone reacts differently to medications,and some suffer more than others or live shorter lives than others but I still think that I can cope with knowing this aftter having read so many 'wonderful' accounts- without the fear factor being the number hot priority.
I feel a little 'lame' right now becoming so over anxious about everything and I know you will all say it's understandable but boy I have really underestimated how strong a terminally ill person could be.
I willkeep you all updated on my prgress after my operation and hopefully you will share your thoughts and experience with me to get me through. Just one quick question if I have no kidneys and there is spread can I still have treatments that are mentioned on here if needed like sutent? votrient? chemo?- can dialysis cope with these? does anyone know? Thanks Julie x
I just wanted to say how amazed I am at the calmness and sincerity of the messages and replies, especially when some of you are living with long term illnesses with no real solutions, and probaby also living one day at a time. It is absolutely remarkable to see such strength of charcter to help others when you yourselves are in need and dealing with all the pain, frustration, fear and confusion that goes hand in hand for everyone who has a family member suffering.
Like I said before my situation is different as I do not have confirmed diagnosis and although I am worried about what that might be I feel that having 'heard' you all discuss these different drugs and trials available that all is not lost as I previously thought. I am realistic and know that everyone reacts differently to medications,and some suffer more than others or live shorter lives than others but I still think that I can cope with knowing this aftter having read so many 'wonderful' accounts- without the fear factor being the number hot priority.
I feel a little 'lame' right now becoming so over anxious about everything and I know you will all say it's understandable but boy I have really underestimated how strong a terminally ill person could be.
I willkeep you all updated on my prgress after my operation and hopefully you will share your thoughts and experience with me to get me through. Just one quick question if I have no kidneys and there is spread can I still have treatments that are mentioned on here if needed like sutent? votrient? chemo?- can dialysis cope with these? does anyone know? Thanks Julie x
I am very sorry that you will be undergoing such an extensive surgery soon. Just the mention of RCC is frightening. You would not be normal if you were not apprehensive. I, too, pray that IF it turns out to be any cancer, that all will be contained within the kidneys. If that's the case, you will probbly not need any other treatment...only monitoring with bloodwork and scans.
Julie, we are all here for you, so never hesitate to express your feelings. One of the purposes of this group is it's a safe place to share good and bad emotions...We all relate!
Please feel free to contact me at any time.
My Love,
Ingrid
I went nearly two months from diagnosis (a back ache turned out to be a 12 cm tumor) to surgery. I also went from "it is encapsulated" - contained in the kidney - to we may have to remove part of the pancreas, the bowel and the spleen; to "just" removing the kidney and 4 lymph nodes. my friend went through the same scenario and her tumor was benign. in my case they got it all - which means all that they could see.
with no evidence of disease there is no treatment. most probably they will do scans periodically - could be every three months, once or twice a year - perhaps forever to make sure nothing comes back. I am not a doc but I do not think chemo and dialysis are used for RCC. when needed, there are a whole array of drugs that work differently for each person. but they work.
if you have not already done so, you may want to get a second opinion; if not before then post op. keep talking to the docs, keep asking questions. can they do laparoscopic surgery? can they remove just the tumor and leave the rest of the kidney? have they done a Pet scan which can sometimes indicate the presence of cancer? we all somehow get through it and the process does make us stronger.
good luck and be well, Rich
I have had a full right nephrectomy in 2006 and a partial left in 2007. I have use of my remaining kidney after 7 weeks of dialysis following the first surgery. It just sounds strange that you are having both kidneys removed before you have a definite diagnosis.I am not a physician so I am sure that there is adequate reasoning behind the surgery. Some people never have a relapse of the renal cell. Others do. It can come back in another part of your body. That is what I am facing now. I have a 2cc mass on my left kidney and a suspicious area in the base of my right lung. I am restricted from the full benefits of some testing. I am allergic to CT dye and the MRI contrast may have a devastating effect on my remaining kidney. So we "wait and see". Last CT and MRI (no contrasts) was in July when all of this was first spotted. I go again for another CT and MRI on Oct. 12th. At that time it will be decided what course of action will be followed. If the mass on the kidney can endure an abalation, that will be done. If it is in a bad area and would damage it further then that is not an option. Even if the ablation is done on the kidney it will not address what has been seen in the lung area.
That's where oral Chemo comes in. Most likely Sutent. Side effects are very unpleasant for most but it appears to work. Patients' cancer has been held at bay for years with this drug or other oral Chemo drugs. I'm willing to try it. I wish you the very best for your surgeries. Please let us know how you are doing as we are all here for you. Will be praying for your recovery.
I took the kidney(s) surgery as a typo. do you have kidney disease?
are you on dialysis now? do you currently have any kidney function?
are you seeing a nephrologist?
I am sorry for my confusion. and I should not be giving advice without knowing or understanding the whole story. my apologies and again good luck, Rich
I have an underlying kidney condition where my kidneys are extemely large (polycystic kidney disease and I am in end stage renal failure also with only 10% function) so while the removal of both kidneys may seem extremely radical for suspicion of cancer it is not that radical of an operation for me as my kidneys are almost useless anyway.
I will also require open surgery due to the size of the damned things and they say that they will need 3 surgeons and the operation will take at least 7/8 hours. They have also advised me that there is significant risk with this operation as my kidney function is so poor.
I will also need to go straight on dialysis to stay alive with no kidneys so my question about whether drug treatments can be used alongside dialysis was because I wil be on dialysis and if cancer is the diagnosis after the op can I have the same treatments as everyone else if required (i.e spread).? I will ask these questions myself when I see my urologist (who is doing the op) later this week but was just wondering if anyone knew.
Thanks - I hope you don't mind but I would like to send you friend requests s I'm sure you will e able to help me along my journey and likewise I will give you my support whenever I can.
Thanks again
Julie x
I am in way over my head but I did want to mention that I have a cousin (here in the US) who is on the waiting list for a kidney transplant and he has opted for an in home dialysis process that he manages himself. although this do-it-yourself dialysis is not easy, he does have the ability to travel and lead a relatively mobile life. would something like that work in your situation? please keep us informed. best of luck to you, Rich
You are correct in waiting to ask your doctor about the meds in addition to the removal of your kidneys. Most of us here are patients and can't really answer your specific questions. I know when this is new to us we think of things in our head 24/7 that we want to know. Take a breath, have a cup of coffee or whatever it is you like, relax and think about all the things going through your mind and write them down. Carry your little list and pen around with you at home so you can note something as soon as you think of it. That's the only way I can do it. Before when I would come home I would say "I wish I had asked this or that". I'm ready now. And write down what he tells you too during your visit. If you don't you'll miss half of it as I frequently do. Best of luck to you. Don't forget - we are here for you.
Andrea
Rich - Yes I have had a fistula(vein joined to artery to make vein big enough for large dialysis needles) created to do hemodialysis, and when this starts I will have to go to dialysis centre 3 times a week for 5 hours each time, however they can then start to train me using my own fistula but I understand this could take up to 3 months and will add time on to each session as I will need to learn to use the machine and clean it afterwards aswell as have my treatment. I cannot have PD dialysis where you insert fluid into your abdomen and is usually done at home because I also have a very large polycystic liver and don;t have the room in my peritomeum to accommodate this type of dialysis. I have heard though that in UK they are doing trials on a hemodialysis machine that is already used in US where it is used at home for less hours daily and it's portable so you can still go on holiday providing you aren't flying or anything. I know this is outside your area of expertise but I just wanted to explain in full. Ionly mentioned dialysis becuase if I do have cancer that requires further treatment after surgerythen the dialysis will need to be able to get rid of the chemicals/drugs so just wondered if anyone out there was on dialysis and could use the same drugs that everyone else mentions. Thank you for taking the time to repond though.
Andreacha- Thanks for the suggestion about writing my questions down- since reading this i have already got 3 pages full for my appointment on 6th. I write my appointments in this book anyway as I have lots of them at the moment so using it for questions for each appointment is a really good suggestion. Thanks Julie x
Andrea