Is 2 months average to have your kidney removed from RCC?
I have hemorrhagic renal cell carcinoma that is 8 centimeters. I saw an urologist yesterday for surgery. She told me that she is scheduling 2 months out because they are backed up. Am I the only one who thinks this is too long to wait. I have pain in my lower back that shoots down to my leg from it rubbing on my spine. I also have terrible exhaustion. My aunt and I think that it should only take one, maybe two weeks. How long have some of you folks had to wait. It could spread and I am suffering. I cannot imagine doing this for 2 months waiting.
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@olive60oil, I can understand your concern. Once you hear the word "cancer", you just want to get on with treatment. It is hard to accept a wait period before surgery, especially if it because of surgical backlogs. Luckily, kidney cancer tend to be slow-growing, especially low-grade tumors.
I'm tagging fellow kidney cancer members like @lauragarrod @bomed @nang @thewife @sally0526 @collegeprof @pcondon @cindysummit @hj83 who can share their surgical experiences with you.
You may also be interested in this related discussion:
– Kidney Cancer: How to make recovery from surgery easier? https://connect.mayoclinic.org/discussion/kidney-cancer/
Olive, have you considered getting a second opinion at another cancer center to see if you can have surgery sooner? Do you know the stage and grade of your cancer?
Olive60oil, Sounds like you are in a very tough spot. Waiting is hard, sometimes it's the hardest part. I am so sorry for what you are going through. If it helps I will give you the history on my husband who has Stage 4 RCC. My husband also experienced pain on his side, which is what led us to detect his renal cell carcinoma. His tumor was almost 10 cm and they removed his entire left kidney. He found out in late August 2021 that he probably had a cancerous tumor on his kidney and after more tests and doctors appointments to confirm this, his surgery was not until the middle of October, so 6 weeks. But our wait was not due to backlogs, it was the process needed to arrive at what treatment/options were needed. How frustrating it must be to wait because that is as soon as they can schedule you.
I do agree with Colleen, kidney cancer is typically a very slow growing cancer, the doctor said my husband probably had this tumor on his kidney for years. But it doesn't matter how slow growing it is, everyone wants to start on the path to being cancer free as soon as they hear the words "you have cancer" so I can only imagine that two months must seem like an eternity, especially as you experience the pain.
I'm assuming they have done all the test needed to determine the cancer hasn't spread but I'm sure in the back of your mind you are wondering if that is happening now! Maybe because it is a slow growing cancer they assume 2 months is acceptable, it may be to them but it is not acceptable if it is happening to YOU! My heart goes out to you! Hopefully they remove the kidney as soon as they can and that is the end of your RCC.
I also agree with Colleen, maybe a second opinion at another cancer center is in order. I'm not sure of your options where you live. It seems in this day and age you need to advocate for yourself!
Hoping for the best outcome possible. Please keep us posted and don't hesitate to reach out with any questions. This is a great site with a lot of caring people with a lot of support.
The urologist said that she did not see cancer anywhere else, but that is not for sure. My MRI showed a cyst on my liver. I forgot to ask her about it on my appointment 2 days ago. I am surprised that she did not bring it up. I do not need to see her until the surgery, so I just have to wait 2 months. Yesterday I was not home and got a message from her scheduling team to make the date for my surgery. I am going to call on Monday to schedule it. Thanks for responding. How is your husband doing?
Good afternoon! I'm curious, does your health provider have a portal service where you can log in and view your documents/results? We have that available in our area.
When my husband had his MRI his urologist said all they had to do was remove his kidney and he would be cancer free. Nothing further needed to be done. Very encouraging! I think that's the case when it is contained to only the kidney. Because we had access, through the portal, to view our results we found the mention of tumors in his lungs. If we had not read that our urologist would have had us believe that everything was contained and we wouldn't have had a clue about the cancer having spread to his lungs. I guess mistakes and oversights can happen?? That's why I mentioned in my previous post that being your own advocate, to me, is an important step in our own health care.
Thanks to new advanced treatment (kidney cancer does not respond well to chemo or radiation) he was started on an immunotherapy drug (Keytruda) and a target drug (Lenvima) to treat the spread of kidney cancer to his lungs. He took this until the side effects became too much, about six months in. These drugs seem to be very effective for my husband and they have kept the tumors in his lungs from growing or spreading. This is very encouraging. This is a relatively new treatment for kidney cancer but for us, it seems to do what you would hope a drug would do when fighting cancer. He continues to work and to function as a normal person and with only one kidney. He goes back every 3 months for an MRI. Again, if the cancer has not spread I don't believe any treatment would have been necessary, just remove the kidney and that would be all that was needed.
Again, hoping for the best possible outcome for you! Hang in there and hopefully you will get through these long 2 months and after surgery you will be cancer free!! Please reach out with any questions you might have. You will be in my thoughts.
I really appreciate all your feedback and support. It really helps to hear from people that have been through the same things. Thank You!
My right kidney was totally destroyed in March 2022. My urine looked like coca-cola. It was a T4 high-grade muscle invasive Upper Tract Urothelial Carcinoma which is rare and has a poor prognosis (11% chance of surviving 5 years). I had chemotherapy first for 3 months which stopped the progression, then 1 month of recovery before radical Kidney/Ureter/bladder cuff surgery was scheduled for August 2022. Now waiting for a biopsy report on possible recurrence in bladder (50/50 possibility of this happening in 7 months, so I'm on target).
I've read that Renal cell carcinoma only involves the kidney, not the ureter and bladder cuff. Your surgery shouldn't be too extensive. I have an incision from just below my breast bone to my pubic bone – about 15 inches long. They also took alot of lymph nodes out of the pelvis and the area between the kidneys. Still, only in hospital for 5 days, then sent home with 6 weeks before I could go back to normal activity. My scar is still tender when I push on the areas.
Good luck. They should be contacting you a couple of weeks before surgery to set up tests – blood work, chest Xray, ECG. And to tell you to stop taking any over the counter vitamins/supplements that might increase bleeding during surgery.
Thank you so much for your feed back. Wish you the best!
I went to the emergency room with what I thought was a kidney stone and found out I had a five pound tumor on my right kidney. My kidney was bleeding into my bladder. I was scheduled for the next week. Kindey was removed, but found spots on lungs that was in September. I've had 7 rounds of immunotherapy. No complications from the surgery. So wound up to be stage 4 RCC.
Hi! I had kidney removed in October after biopsy confirmed I had kidney cancer. It has now spread to lungs and I have 2nd IV today. I also am taking a target drug. How are you feeling?
Hi, I was diagnosed first week of September and had kidney out last week of October:( Waiting was horrible. I did get a second opinion and realized this is bigger than me so I am going to an oncologist specializing in kidney cancer. My symptoms was a tremendous amount of blood in my urine.
I have stage 4 unclear RCC. It’s very hard for me…thank you for reaching out! I pray you’re feeling better!