HELP

Sw1218 · January 19

i came here seeking help, but i feel like i'm not getting it. i've seen other people share their test results and get great feedback, yet when i tried to do the same, i was denied help. then, i tried explaining my situation and asking for guidance, but i still didn't get the support i needed. it feels unfair, man!

AliceB1950 · January 21

I looked at your other post, and didn't see any questions from you. I don't think anyone here is a radiologist, urologist, or oncologist, so it would be inappropriate to offer actual medical advice just based on your scan results.

Sw1218 · January 21

i never asked for a radiologist, urologist, or oncologist, just like neither did any of the other posters. all i asked for was help and guidance like everyone else. they got it; i didn't. they shared the sizes of their tumors and even copied/pasted their results and got help. i didn't. all i was asking for was friendly help and maybe some kind encouragement. it feels disheartening not to get the same kind of support, especially when i’ve seen others share details and receive helpful replies. thanks for nothing.

AliceB1950 · January 22

Okay, what kind of help do you want? Guidance on what? If you've had a scan, I guess you've already seen a urologist. Have they scheduled surgery? Are you looking for advice on getting a second opinion? Are you wanting to know about tips for recovery? Do you have questions about the timeline?

Maybe the other people who got feedback asked more specific questions that members could answer. Of course everyone here hopes for the best for you, just like we would for anyone facing cancer surgery. I had a nephrectomy in 2018 for a 7 × 6 cm cancer, and the recovery wasn't too bad - I was going for slow hikes in my favorite park about a week later.

Sw1218 · January 23

thank you so much. to clarify, i’m looking for some guidance on what to expect at this point. the lesion on my kidney is 2.7 cm, and while i’ve had both a ct scan and an mri, the doctors still can’t say definitively whether it’s cancerous [pRCC]or AML. i haven’t seen a urologist yet, nor is surgery scheduled, so i’m trying to understand what steps might typically follow in a situation like this.

for example, how concerning is a lesion of this size, and based on what you or others may know, do such findings lean more toward being benign or malignant? are there any specific questions i should ask when i do meet with a urologist? i’m also curious about the general process for determining whether a lesion is cancerous if imaging doesn’t provide clarity. any advice or tips from those who’ve been through this would mean a lot as i navigate this uncertain time.

AliceB1950 · January 23

Well, sorry, but I can't answer any of those. Mine was found on a CT for another health issue, and the doctor who ordered the scan had her nurse walk me down the hall to a urologist's office. They scheduled me for a more complete scan and an appointment a few weeks later. At that appointment, the urologist told me that at the size the growth was, and based on his experience, he was about 99% sure it was cancer, and set me up for surgery after my other medical issue was resolved.

You are in such an early part of the process that you'll just have to kind of zombie your way through your first appointments before you know enough to formulate any questions. They might schedule a biopsy, or do another scan farther down the road, or plan an ablation, or surgery … or who knows what. Maybe someone who had a much smaller tumor than mine can help you. But to ease your mind a bit, even though mine was considerably larger than whatever yours is, it was still just a stage 1 and I didn't need anything but surgery.

Also, the people here have all been kidney cancer patients, or still are, or have a close family member going through it. Some are having a rough time if they are going through immunotherapy or recurrence or a metastatic spread. Many are not here every day, or even every week. Some may not have the mental strength to engage with a person who demands their help.

Arx001 · January 23

Hello

I can give guidance and support but not medical advice. There is no way I can suggest what your lesion is. If I did speculate, it would likely be harmful to you.

My thinking is that you’d need a surgical biopsy and this topic should be discussed with a team of doctors including a GP/urologist/nephrologist to coordinate, a surgeon to take the sample and an oncologist to assess. If the urologist says 99% cancer than I am sorry but you need to prepare and plan this way for your own well being. Please do not panic even though you would… I mean don’t let panic take control of you for more than a short time. Oncology is quite advanced and they will attack this disease if you have cancer.

I’d assume you may first be asked to take an MRI and a PET scan.

Best wishes.

Bay Area Guy · January 24

I had a similar situation. In late 2013, a routine urinalysis as part of my annual physical showed microscopic traces of blood in my urine. My doc referred me for a CT scan, assuming it was likely kidney stones. What was found was a 1.7cm lesion on my right kidney. I was referred to a urologic oncologist at Stanford. He had another CT done, as the original was pretty sloppily done (contrast not injected when it should have been). It confirmed the lesion. His recommendation was for active surveillance, as lesions this size can sometimes be benign, and he did not want to affect my kidney function with surgery if it wasn’t needed. He also said if I could not handle the thought of potentially having cancer inside, he could arrange surgery. I decided on active surveillance. It was in mid-2016, after having scans (alternating between CT’s and ultrasounds) that it was determined that the lesion had grown, so a non-invasive robotic surgery got it out. It was chromophobe renal cell carcinoma and I was told it’s a very slow-growing form of RCC that rarely spreads and rarely returns.

My suggestion is that you ask for a referral to a urologic oncologist and see what they recommend.

HELP

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