Multilocular cystic renal neoplasm of low malignant potential

mchrobak
mchrobak Member Posts: 3 Member
edited December 2023 in Kidney Cancer #1

They found a bosniak 2f incidentally during scans. I am only 32. I chose to have it removed rather than following it. Turns out it was multilocular cystic renal neoplasm of low malignant potential. I am only 32 years old so it is freaking scary.

stage 1/grade 1/2.2cm

My surgeon basically told me it’s not “really” cancer because it follows a benign clinical course. Nevertheless he referred me to oncology for follow up scans. He is very optimistic about the situation, but I am still nervous about follow up scans.

Can you guys post your NED stories, and any that have a cystic form would be helpful too!

Comments

  • eug91
    eug91 Member Posts: 471 Member

    Hi mchrobak-

    Welcome to the boards. Sorry you had to join us here, but it's a good group - we know what you're going through, so we know you're gonna do great.

    While it's hard to hear the possibility "c" word, even if it turns out to be malignant, you fortunately caught it early and can get it removed. Under 4cm has little risk of it having spread, and at 2.2cm, you have reason to be VERY optimistic.

    Fingers crossed for you and your scans - hopefully it turns out to be nothing. We're here for you - you've got this!

  • mchrobak
    mchrobak Member Posts: 3 Member

    Well mine technically is cancer, but such a not big deal form according to my urologist. It is referred to as multilocular cystic renal neoplasm of low malignant potential. I will have to do scans for a few years. What was your subtype, stage, and grade?

  • lobbyist0724
    lobbyist0724 Member Posts: 515 Member

    Congratulations, now you can focus one a new life. With such a small, grade 1 "multilocular cystic renal neoplasm of low malignant potential". Your chance of recurring is almost none (never say never to be safe!). At least for the research papers I have read over the year, I have seen none. But do go to the scan, it gives you peace of mind!

  • eug91
    eug91 Member Posts: 471 Member

    I was clear cell RCC, stage 2, grade 2. If you click on my username, my profile has some of my experience - and a link to my nephrectomy experience.

    Fingers crossed for you that your scans go well!

  • key2025
    key2025 Member Posts: 13 Member

    I was diagnosed with a more malignant form of cystic renal cell carcinoma. Stage 1b, grade 2. Early stage is the key, and a more cystic type has better survival than the solid types.

    From literature and as everyone else has stated, MCRNLMP has extremely good prognosis with almost a 95% 10 year survival. Those who didn’t survive had metastases at time of diagnosis, and if you didn’t have those your chance of the tumor reoccurring is almost 0%. These tumors are a very rare subtype though.

    If you check the literature, some oncologists even argue that MCRNLMP should not even be resected as the chance for malignant disease is essentially nonexistent. But to join the chorus, listen to your oncologist and get your scans done.

    I become a nervous wreck about my scans, but rationally speaking I know the chance of reoccurrence for me is low. It’s okay to hear the lizard brain but don’t let it consume you.