1. < Kidney Cancer

Renal Cancer: What are you supposed to feel after surgery?

Posted by oldirish1 @oldirish1, Mar 3, 2018

Last March I has my left kidney removed because of Renal Cancer. We thought that we had gotten everything (kidney and surrounding area plus a lymph node. After 3 months I had another cat scan and there was a new node in my right lung and another one in my right which was old and one more in my left lung. It was biopsied but not enough to get a conclusive results. So we wait another 3 months and we go through the same process and find that the new one in my right lung is renal cancer. So in January I had open chest surgery and they remove all the nodes and find another one and it was removed also. Now I wait until the end of April for another cat scan. Cancer seems to me a surgery wait 3 month for a cat scan to see if you have anything new. Then the testing process and maybe another surgery and so on. Is this the normal happening when they detect cancer in you?

Interested in more discussions like this? Go to the Kidney Cancer Support Group.

Gaybinator | @gaybinator | Mar 3, 2018

My husband had multiple surgeries for Squamous Cell Carcinoma. Early on the surgeon at Mayo J'ville said that he felt that a systemic solution (i.e. chemo/immunotherapy was a more viable). Finally they said NO MORE SURGERY; no more chasing ghosts.

He was put on Eribitux (cetuximab) in September 2016. Eribitux took care of the tumors on the surface, however, in May 2017, there were three tumors - liver, diaphragm and neck. He was switched to Keytruda in May 2017. Two PET scans have come back clear of any visible cancer.

Having been at this a while, there is what I call the "Crystal Ball Syndrome" - if we had only known what we know now, we would have acted differently. The same goes for the doctors. You might want to talk to a hemo-oncologist to see what is available for your situation whether you want to go that route on not. You can't have too much knowledge.

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3 replies
Moderator
Colleen Young, Connect Director | @colleenyoung | Mar 3, 2018

Hi @oldirish1, Surgery is the primary treatment for kidney cancer (renal cancer) even for advanced or recurrent kidney cancer.

You can read about @trishanna's experience with surgery here:
- Kidney renal mass biopsy https://connect.mayoclinic.org/discussion/kidney-renal-mass-biopsy/

I'd also like to bring @foxylady and @darlia into this conversation, who may have more to share about surgical management of kidney cancer.

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2 replies
Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Mar 3, 2018

Hello @oldirish1

I appreciate the update on your health situation. I certainly agree with @gaybinator and @colleenyoung that it is good to become as knowledgeable as you can about this matter. It will help you feel empowered when you go to the doctor. You will be able to ask more questions and feel more in control of the situation. Surgery usually is the way cancer is treated along with follow-ups on a regular basis.

I wish you well as you wait for your next scan. I look forward to hearing from you again.

Teresa

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Darlia | @darlia | Mar 3, 2018

Greetings @oldirish1..Certainly without a doubt the renal cell carcinoma that I had was scary at first...1 cm in my right kidney. It was removed in March 2008 so actually tomorrow is my 10-year anniversary. For me I've been cancer-free since I had it removed but I have to have the scans yearly now. Mine was encapsulated and had not spread so my situation was a little bit different than yours I hope that you can get the help that you need sounds very frustratin. I do know someone who told me that if you have these nodules on your skin and you have fibroids in your uterus then there's a name for this Condition it's a rare condition and it can lead to renal cell carcinoma to but of course that would only applied to a female. For me they never knew how I got the renal cell carcinoma because I was only about 48 years old and is kind of rare for someone that age to have that let alone someone who's a female. I just found out about this other condition about a month ago from someone who I met who has it and I do have uterine fibroid and I've had some noduals on my skin that were unexplained but my dermatologist was not suspicious of them so I do not believe that I was being affected by that condition but still never did know yet how I ended up with renal cell carcinoma just out-of-the-blue. It was actually found incidentally when I had an ultrasound done for gastric issues and then and a radiologist with a really good eye saw the spot in my kidney which he said looks like a tumor. For the first couple years I had to have scans every few months CAT scans with the contrast. Then I had to go for another 3 years with it every 6 months and then now it's every year

REPLY
2 replies
oldirish1 | @oldirish1 | Mar 3, 2018
In reply to @darlia "Greetings @oldirish1..Certainly without a doubt the renal cell carcinoma that I had was scary at first...1..." + (show)
@darlia

Greetings @oldirish1..Certainly without a doubt the renal cell carcinoma that I had was scary at first...1 cm in my right kidney. It was removed in March 2008 so actually tomorrow is my 10-year anniversary. For me I've been cancer-free since I had it removed but I have to have the scans yearly now. Mine was encapsulated and had not spread so my situation was a little bit different than yours I hope that you can get the help that you need sounds very frustratin. I do know someone who told me that if you have these nodules on your skin and you have fibroids in your uterus then there's a name for this Condition it's a rare condition and it can lead to renal cell carcinoma to but of course that would only applied to a female. For me they never knew how I got the renal cell carcinoma because I was only about 48 years old and is kind of rare for someone that age to have that let alone someone who's a female. I just found out about this other condition about a month ago from someone who I met who has it and I do have uterine fibroid and I've had some noduals on my skin that were unexplained but my dermatologist was not suspicious of them so I do not believe that I was being affected by that condition but still never did know yet how I ended up with renal cell carcinoma just out-of-the-blue. It was actually found incidentally when I had an ultrasound done for gastric issues and then and a radiologist with a really good eye saw the spot in my kidney which he said looks like a tumor. For the first couple years I had to have scans every few months CAT scans with the contrast. Then I had to go for another 3 years with it every 6 months and then now it's every year

Jump to this post

They found mine when I went in for normal exam. Magin my surprise when I went back to the doctor and he says that you have to have your left kidney removed and fast.

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oldirish1 | @oldirish1 | Mar 3, 2018
In reply to @gaybinator "My husband had multiple surgeries for Squamous Cell Carcinoma. Early on the surgeon at Mayo J'ville..." + (show)
@gaybinator

My husband had multiple surgeries for Squamous Cell Carcinoma. Early on the surgeon at Mayo J'ville said that he felt that a systemic solution (i.e. chemo/immunotherapy was a more viable). Finally they said NO MORE SURGERY; no more chasing ghosts.

He was put on Eribitux (cetuximab) in September 2016. Eribitux took care of the tumors on the surface, however, in May 2017, there were three tumors - liver, diaphragm and neck. He was switched to Keytruda in May 2017. Two PET scans have come back clear of any visible cancer.

Having been at this a while, there is what I call the "Crystal Ball Syndrome" - if we had only known what we know now, we would have acted differently. The same goes for the doctors. You might want to talk to a hemo-oncologist to see what is available for your situation whether you want to go that route on not. You can't have too much knowledge.

Jump to this post

I go back to the doctor after cat scan, I have been trying to find info to read and talked to people. But since I have had the spread of the cancer everyone just talks about their Kidney cancer and nothing about when it spreads. I agree “Custal Ball Syndrome” is a live.

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oldirish1 | @oldirish1 | Mar 3, 2018
In reply to @colleenyoung "Hi @oldirish1, Surgery is the primary treatment for kidney cancer (renal cancer) even for advanced or..." + (show)
@colleenyoung

Hi @oldirish1, Surgery is the primary treatment for kidney cancer (renal cancer) even for advanced or recurrent kidney cancer.

You can read about @trishanna's experience with surgery here:
- Kidney renal mass biopsy https://connect.mayoclinic.org/discussion/kidney-renal-mass-biopsy/

I'd also like to bring @foxylady and @darlia into this conversation, who may have more to share about surgical management of kidney cancer.

Jump to this post

Everyone continues to talk about Kidney cancer. What about the lung surgery I just went through. I sort of thought that surgery is the only answer but my oncologist said that they have new drugs they might try?

REPLY
Moderator
Colleen Young, Connect Director | @colleenyoung | Mar 3, 2018
In reply to @gaybinator "My husband had multiple surgeries for Squamous Cell Carcinoma. Early on the surgeon at Mayo J'ville..." + (show)
@gaybinator

My husband had multiple surgeries for Squamous Cell Carcinoma. Early on the surgeon at Mayo J'ville said that he felt that a systemic solution (i.e. chemo/immunotherapy was a more viable). Finally they said NO MORE SURGERY; no more chasing ghosts.

He was put on Eribitux (cetuximab) in September 2016. Eribitux took care of the tumors on the surface, however, in May 2017, there were three tumors - liver, diaphragm and neck. He was switched to Keytruda in May 2017. Two PET scans have come back clear of any visible cancer.

Having been at this a while, there is what I call the "Crystal Ball Syndrome" - if we had only known what we know now, we would have acted differently. The same goes for the doctors. You might want to talk to a hemo-oncologist to see what is available for your situation whether you want to go that route on not. You can't have too much knowledge.

Jump to this post

Old Irish, from what I understood from your message is that the cancer found in your lung was metastasized kidney cancer. That means it is not lung cancer but cells from the original kidney cancer that traveled to the lung.

There are new drug therapies used for advanced kidney cancer (immunotherapy and targeted therapies). You can read about them here: https://www.mayoclinic.org/diseases-conditions/kidney-cancer/diagnosis-treatment/drc-20352669vvvv

REPLY
trishanna | @trishanna | Mar 3, 2018
In reply to @darlia "Greetings @oldirish1..Certainly without a doubt the renal cell carcinoma that I had was scary at first...1..." + (show)
@darlia

Greetings @oldirish1..Certainly without a doubt the renal cell carcinoma that I had was scary at first...1 cm in my right kidney. It was removed in March 2008 so actually tomorrow is my 10-year anniversary. For me I've been cancer-free since I had it removed but I have to have the scans yearly now. Mine was encapsulated and had not spread so my situation was a little bit different than yours I hope that you can get the help that you need sounds very frustratin. I do know someone who told me that if you have these nodules on your skin and you have fibroids in your uterus then there's a name for this Condition it's a rare condition and it can lead to renal cell carcinoma to but of course that would only applied to a female. For me they never knew how I got the renal cell carcinoma because I was only about 48 years old and is kind of rare for someone that age to have that let alone someone who's a female. I just found out about this other condition about a month ago from someone who I met who has it and I do have uterine fibroid and I've had some noduals on my skin that were unexplained but my dermatologist was not suspicious of them so I do not believe that I was being affected by that condition but still never did know yet how I ended up with renal cell carcinoma just out-of-the-blue. It was actually found incidentally when I had an ultrasound done for gastric issues and then and a radiologist with a really good eye saw the spot in my kidney which he said looks like a tumor. For the first couple years I had to have scans every few months CAT scans with the contrast. Then I had to go for another 3 years with it every 6 months and then now it's every year

Jump to this post

Hi, @oldirish1. It seems that with kidney cancer, the more knowledge you have, the better ( don't know about other cancers). It is absolutely essential that you have the best, most qualified medical team - oncologist, urologist, whoever. It is essential that you have cancer screenings for the REST of your life! In my case, I have a sarcoma so I had to find the nearest sarcoma center and link up with them through the good offices of my oconlogist. It's less expensive to do it that way than to incur travel expenses trying to commute - rather like having a second opinion. Two kinds of cancer - cancer cells from your original kidney cancer or an entirely different cancer - can occur at any time to anyone. I've had three so far - breast , skin and now kidney - all unrelated, but with all the knowledge I've gained, I think I'm better able to wage a good battle with the evil cancer!! Please ask questions and demand answers! If you're not satisfied with any part of your medical experience, please contact a more knowledgeable doctor no matter where located. BTW, my first post-surgery CT and MRI are scheduled next Friday!

REPLY
oldirish1 | @oldirish1 | Mar 8, 2018
In reply to @gaybinator "My husband had multiple surgeries for Squamous Cell Carcinoma. Early on the surgeon at Mayo J'ville..." + (show)
@gaybinator

My husband had multiple surgeries for Squamous Cell Carcinoma. Early on the surgeon at Mayo J'ville said that he felt that a systemic solution (i.e. chemo/immunotherapy was a more viable). Finally they said NO MORE SURGERY; no more chasing ghosts.

He was put on Eribitux (cetuximab) in September 2016. Eribitux took care of the tumors on the surface, however, in May 2017, there were three tumors - liver, diaphragm and neck. He was switched to Keytruda in May 2017. Two PET scans have come back clear of any visible cancer.

Having been at this a while, there is what I call the "Crystal Ball Syndrome" - if we had only known what we know now, we would have acted differently. The same goes for the doctors. You might want to talk to a hemo-oncologist to see what is available for your situation whether you want to go that route on not. You can't have too much knowledge.

Jump to this post

Thank you for your response and i am sorry that it took a few days to get back to you. I have not looked at the link yet but I will.

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