1. < Kidney Cancer

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 | @dougr19 | Oct 16, 2023
In reply to @gingerw "@dougr19 Well, the hurdle is over now, wondering what he might say. Was there any indication..." + (show)
@gingerw

@dougr19 Well, the hurdle is over now, wondering what he might say.

Was there any indication of how soon the procedure should be? What about the thoughts of a kidney biopsy first, to make sure it is a tumor to be addressed?
Ginger

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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.

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1 reply
goibib | @goibib | Oct 17, 2023
In reply to @dougr19 "I had my appointment with surgeon this morning. He stated treatment would be partial nephrectomy. 20%..." + (show)
@dougr19

I had my appointment with surgeon this morning. He stated treatment would be partial nephrectomy. 20% chance mass is benign, however “standard of care” is to remove your kidney. I will now traipse around the country looking for someone to do it or May decide to stay with this surgeon. Decisions. Decisions. He stated he does about 20 partial nephrectomies a year, robotically. I have no idea if that is a lot or is too few. My wife, son and grandson have been on vacation this past month. They return this Thursday. They have no idea what has transpired. To have these conversations with you has eased my burden. You all are now part of “my family.” Blessings

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Hi..... have they done a biopsy? I was told they can only tell if it is cancerous from a biopsy culture. Any chance you could get a 2nd opinion before removing your kidney?
Blessings

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Lynne Marie | @lbrockme | Oct 17, 2023
In reply to @dougr19 "I had my appointment with surgeon this morning. He stated treatment would be partial nephrectomy. 20%..." + (show)
@dougr19

I had my appointment with surgeon this morning. He stated treatment would be partial nephrectomy. 20% chance mass is benign, however “standard of care” is to remove your kidney. I will now traipse around the country looking for someone to do it or May decide to stay with this surgeon. Decisions. Decisions. He stated he does about 20 partial nephrectomies a year, robotically. I have no idea if that is a lot or is too few. My wife, son and grandson have been on vacation this past month. They return this Thursday. They have no idea what has transpired. To have these conversations with you has eased my burden. You all are now part of “my family.” Blessings

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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

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1 reply
dougr19 | @dougr19 | Oct 17, 2023
In reply to @lbrockme "A partial nephrectomy does not remove your kidney, it only removes the tumor / growth and..." + (show)
@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

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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.

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rono2410 | @rono2410 | Oct 22, 2023
In reply to @racing212 "I had kidney cancer and 2 month's ago I was done in Rochester to get it..." + (show)
@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

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

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Moderator
Colleen Young, Connect Director | @colleenyoung | Oct 22, 2023
In reply to @dougr19 "They want to the partial nephrectomy. They are afraid to do biopsy as it may harm..." + (show)
@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?

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1 reply
dougr19 | @dougr19 | Oct 22, 2023
In reply to @colleenyoung "@dougr19, it sounds like a biopsy before surgery may not be recommended in your situation. Other..." + (show)
@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?

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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.

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1 reply
Mentor
Ginger, Volunteer Mentor | @gingerw | Oct 22, 2023
In reply to @dougr19 "I am seeking a second opinion. The first surgeon could schedule me by the end of..." + (show)
@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.

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@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

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sav1 | @sav1 | Oct 23, 2023

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

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