Hi, my name is Judy. I have recently been diagnosed with Renal Cell Carcinoma

[dolly5550]

Hi, my name is Judy. I have recently been diagnosed with Renal Cell Carcinoma and underwent a nephrectomy last week. I also had a metastatic neck lymph node removed. I am due to see an Oncologist neck week and am petrified that she is going to suggest Chemotherapy.All the research I have done on RCC indicates that chemotherapy and radiotherapy does not work, The preferred drug of choice appears to be Sutent. Does anyone else have any experience with Renal Cell Carcinoma and its treatment? ‹ Recovering from radical nephrectomy stageIV kidney cancer without treatment ›

[Jenny_Williams]

Hi JUdy, I recently had nephrectomy too also included 2 lymph nodes and tumor on the aorta. Mine is transitional cell carconoma so is different type from yours, but we seem to be in the same boat. I have more surgery coming up and then chemo. I am having trouble finding information about all the possibilities

[dolly5550]

Hi Jenny, We certainly do seem to be in the same boat in certain aspects. When I was first diagnosed with a kidney tumour the Doctors thought it was Renal Cell Ca,however it turned out to be Transitional Cell Ca, with metastises to neck lymph nodes.I underwent six rounds of chemo over a four month period.They started me off wiith Cisplatin and Gemcitabine which is the standard treatment. However the Cisplatin was horrendous and I could only tolerate it for three treatments. The Doctors then changed me to Gemcitabine which is much the same amd more easily tolerated.I have since had two CT scans and there has been no spread in the cancer so I am very happy.Each day is a bit of a struggle but I feel fine and have gone back to work full time. Everyone tells you to stay positive but sometimes it is very hard.Let me know if I can help you anymore

[Jenny_Williams]

Hi Judy, Thanks so much for your prompt reply.You are the only other person I have been able to find whom has the same type of cancer as me. I also have lymph nodes affected and removed. I have to have another operation very soon to remove my ureter and possibly more nodes. As I had a rib removed when the kidney was removed, recovery has been much slower than I anticipated and that gets me down a bit. I am mostly positive in my outlook but also realistic and know that I have a long way to go yet. I am to have chemo after the next operation, and not looking forward to that. Itwasgreat to read that you have no spread of the cancer since your chemo. That makes me feel optomistic about my future. How often do you have to have CT scans? I would imagine regularly for a while? My Doctor does not give me a lot of information and Iam left with lots of questions in my head after seeing him. We live in a rural area and the doctors are all so busy here. So pleased to hear from you. Thankyou I know I am not alone!

[dolly5550]

Hi Jenny, Glad to hear that I was of some help to you.I forgot to say that I too had my ureter removed as well as my kidney.I had a visit with my Oncologist yesterday to show him my latest scan. He was rather pleased with the results. He did say that this type of cancer can stay dormant for many years before it rears its ugly head again,so that was good news.Transitional Cell Ca is basically a bladder cancer so that is what they keep referring to it as. I know what you mean by the lack of information out there. All the forums were of people with Renal Cell Ca or those that did have Transitional cell,they did not have any metastases.I have scans every three months,which is the the norm for the first twelve months and every six months after that. The scans are a bit of a pain actually because having only one kidney they have to give you IV fluids beforehand to prevent any damage to your existing kidney and to get a better result,so the whole process takes alot longer.Let me know if you need more information Regards Judy

[Jenny_Williams]

Hi Judy, Thanks for your reply. I was very interested to hear about your Oncologist saying that this type of cancer can lay dormant for many years. I guess each CT scan is a tense time awaiting the results. I had a scan on Monday and see my specialist next Tuesday to find out when I have to go back to hospital to have the ureter removed. Did you begin chemo soon after your op or did you have to wait a while? I had part of a rib removed with my op and that has been giving me hell. It seems to be taking forever to stop hurting. It is nearly 12 weeks now and I still run out of energy very quickly. I will be glad when next Tuesday comes and I find out where I stand.I think the pressure of not knowing is worse than knowing At least I can come to terms with the known facts. I am really pleased that you have a good result from your scan. You have given me some confidence that a good outcome can happen. Regards Jenny

[dolly5550]

Hi Jenny. I had to wait a month or so after my operation to start chemo, mainly because they were not sure whether the malignant lymph nodes in my neck were the same type of cancer (TCC)as in my kidney.The Doctors were hoping that it was a different type of cancer which meant that the cancer had not spread from my kidney.Apparently it is uncommon for a kidney cancer to spread to the neck.Unfortunately after having another operation it turned out to be the same.I imagine you should start chemo pretty soon.I am very anxious about a week or so before having the scan and then having to wait another day before getting the results. In a way I am lucky, as I am a nurse and can mostly understand the jargon.As I mentioned before the chemo is pretty horrible.The worst side effect is the nausea,however they do give you alot of drugs to help prevent it. I f you cant cope with one type of chemo drug tell the Doctors and they can give you something else. I was about to give up on the treatment altogether until they changed me to another drug.The tiredness is another thing you have to cope with.It has has been four months since my last treatment and I still get pretty tired.I did not lose all my hair although it did thin alot.I guess it is all worth it in the end. I do hope everything goes ok for you as you seem to have been through alot

[Jenny_Williams]

Hi Judy , Thanks for your reply. I appreciate hearing about your experience with the chemo and lymph nodes. It seems we each have slightly different variations of the same cancer. I have been toBendigo for 3 days attending my nephews wedding, and found I got really tired listening to conversation and keeping up with the crowd. Life certainly changes with cancer and I wonder if I will ever get my old stamina back. I see your friend request on my email and would like to be your friend. I just cant work out how to confirm it on this site. So be patient. I will find out how to confirm it eventually. I see my doctor tomorrow so will find out what the next step is then. Talk to you soon. Keep well Regards Jenny

[dolly5550]

Hi Jenny, How did you go at the Doctors,I hope he had some positive news for you.I can understand your tiredness,it seems to be the main complaint for all of us.I do think that it does get better somewhat.I forced myself to go back to work and that was my salvation.It gave me something else to think about and make me feel as though I had my old life back again.The one thing that I do find upsetting is that people seem to think you are cured of cancer because you dont look sick.I guess it may sound strange but I hate being at home alone on my days off,mainly because it reminds me of the six months I was more or less housebound while having chemo. Did you work before your diagnosis? Anyway do let me know how you got on at the Doctors Regards Judy

[Jenny_Williams]

Hi Judy, I can identify with your comments on your last message. People do think that because we look good we must be cured of cancer. There are some strange ideas floating around out there. I guess that for someone who has never had cancer or family with it, it is hard to understand. I am learning more each day myself. I am retired from the workforce. I retired at 55 and have been an avid lawn bowler since then, so really miss my bowls and being involved in the club. Friends keep me informed so I have some contact still. My visit to the doctor was both bad and maybe good news. I won't know until I have been to see an Oncologist at St Vincents Hospital in Melbourne early in May. We live 3 hours from Melbourne so I hope chemo can happen closer to home. It seems I have a new largish tumor growing on a lymph node up against my aorta. My doctor does not know if it is the cancer or if it may be a sac of fluid that has developed since my nephrectomy 12 weeks ago. If it is only fluid that will be wonderful as nothing else is showing on my scan. Once again it is a waiting game to find out where I stand. I can understand you enjoying being back at work. I like to do things that make me feel normal too. It is nice to forget for a while. Though I have come to terms with my situation and am adapting my interests to things I can manage to do in a short time before my energy runs out each day. Great to hear from you Regards Jenny