r/pediatriccancer • u/Ok-Owl-2512 • Mar 16 '26
Wilms tumor
My sweet 2 year-old boy has just been diagnosed with a Wilms tumor. I’m beyond devastated, absolutely terrified. We just found it because he had blood in his urine (hematuria) and fever, so we suspected a UTI. The doctors didn’t feel any masses, but an ultrasound scan today found it. I don’t have any more information yet.
I’m so confused as I’ve read the Wilms are usually palpable in the abdomen and don’t lead to hematuria. Anyone has had experiences with this strange presentation?
Thank you in advance for sharing your stories — I’m shattered and confused.
1
u/GratefulGirl19 Apr 27 '26
Hoping your son has a quick recovery, I had stage 3 wilms tumor when I was 11. It was really tough and I ended up having my kidney removed along with a large mass. I got through it and he will too, it’s hard in the moment but i’d recommend a children’s hospital because they specialize in that. I got treated at Dana Farber in Boston and I still go every year to be checked up (34 now).
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u/Ok-Owl-2512 29d ago
Thank you so very much for sharing your success story. It’s so helpful to read — I haven’t come across many and I am frankly devastated and really scared by it all. Fingers crossed he pulls through too. Thank you again
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u/Temporary_Visit4170 22h ago
Hi! I hope that he’s doing well!!
I am 19 and was diagnosed with Wilms at age 4. I did have a mass, but the first sign for many months was hematuria that was missed. I am so sorry that this is happening to y’all!!
I know y’all are in the trenches right now, but I want to share that it is very possible to thrive following Wlims! Cancer is a huge part of my life still, but not anywhere close to all of it! I have been able to pursue my dreams academically, athletically, and personally, and haven’t been held back by my diagnosis. I know this isn’t everyone’s experience, but thankfully Wilms outcomes these days are very good! Wishing yall the best!!
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u/Ok-Owl-2512 17h ago
Thank you so much for sharing your experience! It’s so helpful to hear from other folks who had similar symptoms, as hematuria seems to be not so common.
May I ask, did you have only chemo or chemo and radio? We’re doing both.
If you’re OK sharing, how is cancer impacting you now? Trying to understand what the future may hold for my little one.
Thank you again!
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u/Temporary_Visit4170 11h ago
Of course! I had chemo, radiation, and surgery. We were planning just chemo but during surgery to remove the tumor it burst and so we had to do radiation to make sure we got all of it. I also had lung surgery due to a suspected metastasis, but thankfully it was nothing! Radiation sucks but hopefully his will be fairly short due to his diagnosis!
As far as impacting me currently, I do have some long term health impacts but thankfully nothing awful! I have fertility problems and am in menopause, so I have to take daily hormone therapy. The radiation affected my pancreas so I have high blood sugar. Other than that I mostly just have annual follow ups with my doctor! I am at higher risk for other cancers and some heart problems due to red devil chemo, but thankfully that hasn’t impacted me at this point! For context about health - I’ve been able to play college volleyball after all of this and been just fine (I wish I could breathe a little better after lung surgery and I wash radiation didn’t make me an inch shorter lol, but it didn’t make playing sports impossible)
I have also had some great things come from my diagnosis! I learned very quickly in my life that I wanted to pursue a career in medicine, I have been able to attend camps and retreats and met so many amazing people! I’ve been able to write a children’s book about my experience and use that to give back to the community. And most of my college has been paid for thru cancer scholarships.
This is just my experience and I’ve been very very blessed to have such a positive outcome, but thankfully with the advancements in the last 15 years (I was diagnosed in 2010), it sounds like a lot of kiddos are doing much much better long term from treatment than they have in the past!!
Wishing y’all the best! Lmk if you have other questions, I’m more than happy to help!
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u/VaBookworm Mar 16 '26
I'm so sorry you guys are going through this! My daughter was diagnosed with a Wilms tumor when she was 13 months old. She's now 6 years old and doing well! It is an incredibly stressful period of time but he's still young enough you can go by the same mantra that got me through it- he's so young he won't remember any of this. My daughter had a probable mass but I would honestly take it as really good luck that your son doesn't. The oncologist explained to us that typically the masses are quite large when they are found because the kidneys are protected by the ribs on the back so Wilms tumors are usually not detected until they are large enough to be felt from the front. The fact that his wasn't palpable means it was caught fairly early on! They will have to make the final diagnosis with a biopsy, but our oncologist advised us that in this age group, a mass on the kidney is rarely anything else, regardless of how it presented.
My biggest recommendation is just to take advantage of the child life specialist at the hospital if your hospital has them. They make the whole experience slightly less awful for the kids.