New to this...

Migdet71
Migdet71 Member Posts: 12 Member
edited January 31 in Kidney Cancer #1

I'm still processing all this... I'm a 58 YO male. October '23 my primary doc sent me for an ultrasound to look at my liver because of some high ALT/AST blood test numbers. Well, it confirmed no cirrhosis, just a bit of fatty liver. It also identified a 5 CM mass on my left kidney. I freaked out!!! A couple CT scans later and the probable diagnosis was Angiomyolipoma, so no big deal, right? Fortunately my urologist wanted to remove it due to chance of bleeding. I had a robotic partial nephrectomy on Dec 22 2023. I just got the call from my urologist last Friday with the bad news from the pathology lab. Turns out it was renal carcinoma, specifically epithelial malignancy. Too new to this to make sense of all the pathology notes at this point, but I'm scared. Doc says he wants me to have another CT in a couple months. So do I just wring my hands in the mean time?

Comments

  • eug91
    eug91 Member Posts: 471 Member

    Hi Migdet,

    Sorry you had to join us like this, but we've been through what you're going through and we know you're going to do great.

    First off, congrat on getting through your nephrectomy. Hopefully your body is well on the way to recovery. While it's never easy to hear the "c" word, be thankful that it's out of your body now.

    Your doctor will probably have you on follow-up CT scans to make sure it doesn't ever come back. Those follow-up scans can be tough mentally - we call it "scanxiety". But you gotta do them. Those scans will confirm for you that you remain cancer-free - or if they do find it came back, it'll mean you catch it early and can treat it early.

    Good luck with the scans. We're here for you if you have questions. You're gonna do great - you've got this!

  • Migdet71
    Migdet71 Member Posts: 12 Member

    Thanks, eug91. Yeah, the news was a gut punch for sure. Almost all healed up from the partial neph. and physically feeling pretty good. I had 100% quit alcohol Nov. 1st to address the fatty liver issue and am maintaining that sobriety even through this ordeal, so I guess that's a plus. Now to let my kids know that they can no longer tell their docs that there is no cancer in the family.

  • Lisa 1102
    Lisa 1102 Member Posts: 17 Member

    I’m so sorry to hear that you are dealing with this. I had a robotic laparoscopic partial nephrectomy in October, 2020 of my right kidney for kidney cancer, clear cell type. My tumor was a grade 3 on a scale of 1-4, with 4 being the most aggressive. Two lung nodules were also discovered at this time and have been stable since then, but I had frequent CT scans as a result. When you feel like it, you may want to check the pathology notes or check with your surgeon to see if there were “clear margins”. I suspect that is the case since you said your doctor was recommending a CT scan in a couple of months. My first CT scan was 3 months post-surgery. All of my scans have been fine since but your feelings are completely normal-cancer is a tough diagnosis to receive. Do not just “wring your hands.” Gather as much reliable information as you can, preferably from your doctor, and ask questions of him/her. Be proactive. Ask follow up questions if, like me, you have a difficult time understanding the medical jargon. You are not alone and the folks here are wonderful. Please keep us posted.

  • Migdet71
    Migdet71 Member Posts: 12 Member

    Lisa1102, Thanks for the feedback. The pathology report reads like a Latin text book, but it does state the margins are "normal", whatever that means. It says mass was 66 grams and 7.4 x 6.3 x 3,7 cm. The part that really freaks me out is the "Overall, the findings are most compatible with a malignancy of renal epithelial origin, of which the clinical course is difficult to predict". I don't know what that means, but it doesn't sound reassuring.

  • Lisa 1102
    Lisa 1102 Member Posts: 17 Member

    I’m not a doctor but the comment that the margins are “normal” sounds very good to me. I also see why you are not reassured by the comment regarding the clinical course as being difficult to predict. That would be an excellent question for your doctor. I’m really puzzled by that comment as it seems an odd thing to be in a path report. What I mean is, no one knows what the clinical course will be, especially at such an early point. The likelihood that I had renal cell cancer was 1-3%, but that’s what I had! Do you know how your cancer was staged? I was stage 1a, despite the more aggressive nature of my tumor. This may not be in the path report. My doctor told me what my stage was and it is in his notes, to which I have access and have read. If you don’t know the stage, ask your doctor. I always feel better if I know what’s going on so I ask questions. Just be careful of the internet as a lot of questionable info is out there. Anything I can do to help, just let me know.

  • Migdet71
    Migdet71 Member Posts: 12 Member

    Thanks, Lisa. I'll ask him the stage question at our next appt.

  • AliceB1950
    AliceB1950 Member Posts: 237 Member

    The stage is based on the size. Anything up to 7 cm is stage 1, over 7 cm is stage 2. Midget, were the measurements in your report for the cancerous part, or for everything they removed including the part of the kidney? Mine was 7 cm In the largest dimension for just the cancer, so although technically stage 1, my doctor says he thinks of me as a stage 2 for follow-up purposes. It was a grade 4, which sounds horrible in a worst-of-the-worst way, but all it's meant is a few extra scans in the 5+ years since my nephrectomy. Try to not freak out about the scans; they're the standard followup for us! I think of them as routine maintenance, like an oil change. You've got that nasty piece of crap out of your body, so that's a huge thing to be happy about.

  • Migdet71
    Migdet71 Member Posts: 12 Member

    Alice, the report honestly reads like that was the entire mass. It says "central portions of the mass show adipose tissue and bone formation" whatever that means

  • Allochka
    Allochka Member Posts: 1,062 Member

    Hello,

    sorry that you are here with cancer diagnosis. It must have been a really bad news - unexpected cancer! (the majority here were morally ready for this, because cancer was usually suspected from the start).

    As others said, follow-up scans are a must, they are standard protocol and everybody has them post-surgery.

    However, I must say your pathology sounds strange indeed. Looks like pathologist was not sure what exactly it is. Knowing cancer type and grade is really important to determine probability of recurrence and follow-up protocols.

    Perhaps you could have your tumor reviewed by some experts specializing in kidney cancer ? IN some kind of specialized clinic? I would definitely try to get a second (and third, if needed) opinion and to determine what exactly this is.

    Good luck and keep us posted!

    Alla

  • Migdet71
    Migdet71 Member Posts: 12 Member

    Alla,

    Thanks. Yes, it's all confusing to me. The initial pathology was performed at the hospital where I had my surgery. Apparently they weren't comfortable making the call, so it was sent to Vanderbilt University for a second opinion, at great expense. I really wish pathology reports would come with an English translation.

  • Migdet71
    Migdet71 Member Posts: 12 Member

    Given what I know, which admittedly isn't much, do I inform my biological siblings and children? I don't want to worry anyone, but if this can be found with something as non-invasive as an ultrasound, I kind of feel like I should offer a heads-up. I almost blew mine off.....and really glad I didn't.

  • AliceB1950
    AliceB1950 Member Posts: 237 Member

    Midget, have you been offered genetic testing? Not that it's always helpful. My maternal grandmother had uterine cancer, and so did I. My mom and a paternal aunt had breast cancer, and so did I. My dad had kidney cancer, and so did I. Because I've had multiple cancers, i was offered genetic testing. Zip. Nada. No connections found. This may sound weird to you, but if you're going to have cancer, kidney is certainly not the worst one to have. It's mostly cured by surgery alone, with no other treatment, and the recurrence rates are low.

  • Allochka
    Allochka Member Posts: 1,062 Member

    Hi Midget,

    Alice is right - your siblings should worry only if genetic testing would find a specific syndrome, which could be responsible for increased risk for kidney cancer.

    Usually kidney cancers are not hereditary (unlike certain breast or colorectal and some other cancers). There are some genetic syndromes which predispose you to kidney cancers. But unless you don’t have them - your relatives shouldn’t worry.

    So main questions are - what is it which you’ve had, and whether genetic testing is recommended.

  • Migdet71
    Migdet71 Member Posts: 12 Member

    Thanks. I'll see what my doctor recommends.

  • key2025
    key2025 Member Posts: 13 Member

    Would second excellent advice on finding stage and grade as that would give you the biggest clues on prognosis.

    A pathologist will assist in the robotic laparoscopy surgery and confirm surgeon didn’t leave any of the tumor behind (normal margins: which means surgery was successful as robot cut past the tumor into normal tissue).

    like others have said, you path report is confusing. The pathologists job is to try and figure out what subtype your tumor is, as that can help with prognosis and treatment. Calling it epithelial is sort of saying he think it’s a kidney cancer in the broadest sense but he’s not sure what kind of the 3-4 most common subtypes (which is why the clinical course is difficult to predict). The confusing part is the mention of bone. The pathologist thinking it’s a kidney tumor is very good though as it means they don’t think it’s a metastasis from elsewhere.

    To keep it simple, as others have said ask what is grade and type. If scans didn’t show spread locally or distally that is a big thing. You don’t need to necessarily fixate on exactly what specific subtype or driver of your tumor is as a patient. If they don’t know or can’t figure it out it doesn’t really matter if it’s low stage\low grade as prognosis is very good and surgery can be curative regardless of what exactly it is. Do your CT scans though as catching any reoccurrence early will buy you the most time.

    regarding genetic testing, unless you have family history of kidney cancer may not be needed. Most kidney cancers are driven by mutations in the VHL gene. If family are concerned they can do something like 23 and me which would pick up inherited mutations. There’s only about 200 genes out of 35,000 implicated in cancer.

  • Migdet71
    Migdet71 Member Posts: 12 Member

    Key2025,

    Well, to muddy family history, I'm adopted. I do have tangential contact with half siblings, but its complicated....I do have biological adult children. I wasn't thinking of specifically alarming anyone, just giving casual advice to, in general, not refuse a non-invasive look-see (like Ultrasound) if their doctors ever want to take a look around. My mass was an incidental find during a liver ultrasound.

    The first line of the consult report from Vanderbilt says "Thank you for sending this challenging case in consultation", which is not comforting. It seems very heavy on stain reactions, which mean nothing to me....."Positive for PAX8 while negative for CA-IX....lesion cells are positive for GATA3 and EMA and BerEp4 is positive in a subset of cells..."

    So, I'm positive for ovarian cancer (sans ovaries) and negative for renal cell, according to stain results.....so confusing.

  • key2025
    key2025 Member Posts: 13 Member

    Would always agree it’s better to get the tests done and find things early.

    I’m not a medical professional, my guess regarding “ challenging case” is likely referring to it from a pathologists standpoint. It’s their job to figure out what it is and it sounds like they can’t make a definitive assessment. If it’s causing you anxiety let you oncologist know and send them a message. Just know that those reports aren’t meant for patients so their phraseology is geared that way.

    Your oncologist wants to know what it is as they can recommend treatments that patients with that specific type of cancer responds to. Also, they know what treatments patients don’t respond to so they won’t subject you to anything unnecessary.

    Again, not a MD but it staining for ovarian markers is good as you don’t have ovaries. This means it didn’t spread from somewhere else. May also mean they may ask you to do more imaging (and insurance would hopefully cover it).

    Cancer cells don’t normally trans differentiate into cell types of different organs. There are examples of this, especially from academics, but it doesn’t necessarily mean your prognosis is worse or better.

  • Migdet71
    Migdet71 Member Posts: 12 Member

    Thanks, Key2025

    I don't have an Oncologist as of yet. Pre-surgical diagnosis was a benign angiomyolipoma, so the big C wasn't really a concern.....until it was. I'm supposed to have another CT in a couple months, so I guess if the Urologist got it all, the pathology might be just a footnote. In the meantime all I can do is wait and wonder. I'm sure I'm in good company there.

  • Deanie0916
    Deanie0916 Member Posts: 616 Member

    Hi Midget, welcome to this site! Glad you got that tumor out, and I agree to keep checking it with scans. I also agree that "the waiting is the hardest part", to quote Tom Petty. All the best to you, keep us updated!