Kidney cancer patients: Let's connect and introduce yourself

Posted by koke @koke, May 2, 2023

I have stage 4 kidney cancer. Taking target and immunotherapy drugs. Would love to connect with anyone who is going through the same process or has kidney cancer!

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

@dougr19

I will be playing golf this morning. A distraction until I see the surgeon tomorrow. I could surrender a kidney without even knowing who the enemy is. Question. Has anyone had a partial nephrectomy? Any complications? Were you given a choice? Take on the day. Each one of you are a true blessing.

Jump to this post

Hi. I have had 2 PN. I was diagnosed with bi lateral kc in March of 2023. Tumors in both kidneys. The tumors were not similar in mass and location. Had two separate procedures one in May and one last week. Currently recovering and doing great.

REPLY
@dougr19

Good Evening,
My name is Doug and I too was just diagnosed with RCC. They will “stage” your cancer and determine from that staging what they will do. Some of those on this web site have had biopsies to determine the cancer. I have not had a biopsy. They told me my course of treatment is a partial nephrectomy. I am currently seeking a second opinion. The reason for my second opinion is to see if I lik e the next surgeon better than the first. No question should go unanswered. No question is less valuable than another. They’re amazing people who are part of this support group. All willing to help and support. We are all on this journey. Blessings.

Jump to this post

Many thanks for your reply please keep in touch
Kind regards Noelene

REPLY
@sav1

Hello I’ve just been diagnosed with RCC kidney cancer I find out next month what they will do they were talking about a nephrectomy partial do not know how long I can’t work after operation or what it involves my anxiety has settled but very worried

Jump to this post

Good Evening,
My name is Doug and I too was just diagnosed with RCC. They will “stage” your cancer and determine from that staging what they will do. Some of those on this web site have had biopsies to determine the cancer. I have not had a biopsy. They told me my course of treatment is a partial nephrectomy. I am currently seeking a second opinion. The reason for my second opinion is to see if I lik e the next surgeon better than the first. No question should go unanswered. No question is less valuable than another. They’re amazing people who are part of this support group. All willing to help and support. We are all on this journey. Blessings.

REPLY

Hello I’ve just been diagnosed with RCC kidney cancer I find out next month what they will do they were talking about a nephrectomy partial do not know how long I can’t work after operation or what it involves my anxiety has settled but very worried

REPLY
@dougr19

I am seeking a second opinion. The first surgeon could schedule me by the end of the year, however he does 20 partial nephrectomies a year, robotically. I do not know if that is a minimal, moderate or maximal amount per year. I am hoping the second opinion does more. However, I am not yet scheduled for my second opinion. I have a December 24 appointment at the Cleveland clinic, but If I am confident with someone here in Oregon I will stay here and cancel at Cleveland clinic. Thanks for information every comment helps.

Jump to this post

@dougr19 I am listing a few good places to check here in Oregon, that you might want to look into. If you want to stay within the state, tske a look at them. If you would like to stay on the West Coast, there are resources I can provide in San Francisco and Los Angeles areas.

Legacy Good Samaritan [Portland]: https://www.legacyhealth.org/Services-and-Resources/services/adult/cancer-institute

Oregon Health University [Portland]: https://www.ohsu.edu/health/find-a-doctor/search?term=kidney+cancer&accepting=&age_group=Adult+%2818%2B%29&gender=&insurance=&language=&distance=&location=&online=&pcp=&sort=&shuffle_seed=PS-6535962ca7de88.16896517

Willamette Valley Cancer Institute [main campus in Eugene]: https://www.oregoncancer.com/
Ginger

REPLY
@colleenyoung

@dougr19, it sounds like a biopsy before surgery may not be recommended in your situation. Other diagnostic tests have already shown the high liklihood that the mass is cancerous and should be removed. It is likely that once the mass is removed partial or radical nephrectomy depending on what they see once they get in there, the tumor will be biopsied. The information they receive from the tumor will give your team more information such as the stage of kidney cancer. This helps determine if further treatment is necessary and if more treatment is necessary, what treatment is the most effective for your tumor's characteristics.

Have you been scheduled for surgery? Are you seeking a second opinion?

Jump to this post

I am seeking a second opinion. The first surgeon could schedule me by the end of the year, however he does 20 partial nephrectomies a year, robotically. I do not know if that is a minimal, moderate or maximal amount per year. I am hoping the second opinion does more. However, I am not yet scheduled for my second opinion. I have a December 24 appointment at the Cleveland clinic, but If I am confident with someone here in Oregon I will stay here and cancel at Cleveland clinic. Thanks for information every comment helps.

REPLY
@dougr19

They want to the partial nephrectomy. They are afraid to do biopsy as it may harm the kidney and be unable to do the partial and lead to radical nephrectomy. It is all percentages. The likelihood of cancer is 80% therefore, they recommend this type of treatment. I will now get other opinions try to make sense of all this. Surgery will most likely take place in the next three months. Thank you for your questions and responses. Blessings.

Jump to this post

@dougr19, it sounds like a biopsy before surgery may not be recommended in your situation. Other diagnostic tests have already shown the high liklihood that the mass is cancerous and should be removed. It is likely that once the mass is removed partial or radical nephrectomy depending on what they see once they get in there, the tumor will be biopsied. The information they receive from the tumor will give your team more information such as the stage of kidney cancer. This helps determine if further treatment is necessary and if more treatment is necessary, what treatment is the most effective for your tumor's characteristics.

Have you been scheduled for surgery? Are you seeking a second opinion?

REPLY
@racing212

I had kidney cancer and 2 month's ago I was done in Rochester to get it removed. I has a mass on my kidney and they got it all and left the kidney.. I'm not doing any treatment. They're just watching it more

Jump to this post

. Very happy to hear your are doing well. How large was the mass on your kidney if I might ask?

REPLY
@lbrockme

A partial nephrectomy does not remove your kidney, it only removes the tumor / growth and whatever portion of kidney it involves. Then they repair it. Robitically is less invasive and not every surgeon is trained how to do this. If he does 20 a year that is one every two or three weeks... which is a good number. You can do a search of his patient reviews sometimes as well. I have had that surgery 2 times, one on each kidney and both are functioning. I am praying that you feel comfort in your decision

Jump to this post

Last test to see if it has spread to my lungs. CT scan Thursday evening. All tests should be in. Will get second opinion and ask about biopsy. Appreciate all ideas, prayers and encouragement. Blessings.

REPLY
Please sign in or register to post a reply.