It has metastasized into the lymph nodes, lungs, parts of abdomen and neck. It is still in the early stages of diagnosis, he is 42 and we'll be going to an oncologist tomorrow. I want to tell him it will be okay which I deperately want it to be true. Idk how do you push through. If you have any positive things to share, please do. I am just numb.
For a variety of reasons I elected to fire my previous Urologist. Coincidentally that same day I finally heard back from MD Anderson and have since handed over all of my care to them. Talk about a night and day difference, it's been incredible.
Their Urologist that I'm seeing feels very confident he can get good margins with a Partial Nephrectomy AND optimistically I might be able to maintain 75% renal function from that kidney. That is such an insane amount of optimism for a 5-6cm tumor. I think the doc MIGHT be a little overconfident, because holy shit that is such a great potential prognosis. Realistically if I can heal well and retain 33% or so I'd be thrilled, anything above and beyond I'm looking at as a bonus. I'm also well aware I could wake up from surgery to the news that they had to do a Radical after all, and Im at peace with that potential.
24hrs after my first visit at MDA they had me in for a CT with contrast to better map out their surgical options, but also to search for any spread of the cancer (yes I know it's not officially cancer yet, but at 5-6cm I'm in the 85-95% chance for malignancy so Im just calling it cancer). They also ran more blood and urine labs immediately after meeting with the doc and holy shit, this team had my results before I could even get back to my car. I've had 'good' medical care in the past, but I dont even know the words to describe how fast and efficient these folks have been. Short of being a billionaire I cant even imagine getting this level of care.
From first seeing a mass on ultrasound on April 13th to today has been one HELL of a rollercoaster, but Im feeling more optimistic today than I have during this entire month. Still some tough conversations to be had with my wife before I go under the knife, but we're both prepared to cross that bridge soon.
This sub has been great for realistically preparing me for what to expect and just the sheer amount Ive learned from everyone else's story. I hope to also be that resource for some folks going forward someday.
I'm a 48 year old female with bilateral tumors on the kidneys, 7cm (R)and 1.5cm(L). The MRI shows necrosis on the big one and I'm scheduled for a complete nephrectomy on the right within a few days. This was an incidental finding due to me seeking out a hysterectomy. This has blown me away and I'm looking for others who've had similar experiences. All of my labs are normal and I had no real symptoms. So far there aren't any mets seen, but we have not scanned my lungs yet. I'll get a scan at some point post op, so I just have to wait.
Looking for advice or those who can share their experiences. I'm an active gal who works full time and am gobsmacked by this new identity of being a cancer patient.
Hi is there anyone on here that is from the UK that has had good results from immunotherapy? Metastatic kidney cancer spread to the lungs? Thanks x
Had my PN early this morning and sitting in the room recovering now. Been mostly asleep all day.
Optimal outcome and only lost about 15% of the kidney.
Just wanted to shoot a thanks to this entire forum for all their sharing. Been lurking, and posted once, the past 4 months during my journey and your stories have been insanely helpful.
I had a robotic partial nephrectomy in March. I have 5 1-2 inch scars starting under my bra line all the way down to almost my groin. They are healing fine but bright red in colour.
Did your scars ever fade? How do they look as time goes on? My whole left side of my stomach is ruined and it’s hard coming to terms with it. I had a c section and that scar quickly faded light pink and is barely noticeable so I was hoping these would be too but it doesn’t seem to be the case.
I’m sitting in the ER with my husband. He was diagnosed with a 10cm tumor beginning of March. Surgery is scheduled for 6/5 at Univ of Maryland.
Unfortunately, he’s having severe pain, blood in urine, and trouble urinating. This is the 3rd time. He’s also anemic, has intermittent low grade fevers in the evening, and night sweats. It’s been a long 8 weeks and we have 5 more to go.
Thank you for having such a positive community here.
*edit: it looks like the people have spoken and have downvoted my post to zero. I have decided to delete the original verbiage.
Hello. I am a college student, 20 F, 5’4, 111 pounds, non-smoker, only medication I take regularly is Apri, a combination birth control pill.
So basically, this all started last Wednesday. I thought that I had a UTI, because for several days it hurt when I went to the bathroom, and one day I found blood in my urine. The next day I go to urgent care, and they don’t find anything in the dip test, but they do find a lot of blood in my urine. They end up prescribing me Bactrim. They then tell me, if I experience any kidney pain to go straight to the ER.
The next day, I start experiencing kidney pain and I go to the ER. My blood work was normal, and they didn’t find anything in my urine culture. They just told me to keep taking the Bactrim, and if my symptoms return to go to my campus medical facility to get more antibiotics. However, the day I get back from the ER I start experiencing the most excruciating stomach pain I’ve ever felt. It felt like it was burning and sharp, and it came in waves. The antibiotics largely eliminated any symptom of the UTI that I was worried about, but now the stomach pain was so debilitating I couldn’t go to class.
I end up paying a visit to my campus Medical Center and tell them about what was going on, and they tell me that I should stop taking the antibiotics before I complete my course, and prescribe me an antispasmodic because they think that I’m having a intestine spasm. I listened to them, and stop taking the antibiotic and start taking the antispasmodic. It doesn’t help with the pain.
Then, a day later, the stomach pain gets so bad that it’s the worst pain that I have ever felt, and the kidney pain makes a reappearance too. So I go back to the ER, and they perform a CT scan on me. They don’t find anything. They also don’t find anything in my blood work. They gave me medicine for the pain, as well as a muscle relaxant. I don’t know what’s going on my kidneys still ache, and my stomach pain still comes in waves, and I have the chills.
Does anybody know what could be going on or what I should do? I have no previous medical history that would indicate anything going on with my stomach or kidneys, so I’m very concerned.
I’m just curious if anyone on here has had a c section or maybe a similar abdominal procedure and also a partial or total nephrectomy and if so was there any comparison in recovery?
A little over a week ago, I went to the ER for vomiting three weeks straight, and while they were scanning my abdomen they found a Bosniak 3 cyst on my right kidney that’s 3.1 cm.
Just today I found a blood clot in my urine but the urine itself was clear and my right side hurts a bit, more when I breathe in.
I’ve had two urine analysis tests this past month, and neither showed any blood indicators.
I called my urologist’s office multiple times when I found the blood clot but no one answered, so I left them a message.
All that to ask, does anyone know if this is normal for a kidney cyst of that type and size? Should I be worried?
Thank you.
I need some help clearing my mind. I have health anxiety for about two to three years now. I have had a lot of diaherra and engery level issues over that time. Fast forward to now I thought I had my finally answer. I was diagnosed with kidney cancer. I had a partial kidney removal a few months ago and have been feeling great. Engery levels were back and stomach issues were gone. Drs said my tumor wasn't causing any systems.
My pathology report was as follows KIDNEY: Nephrectomy SPECIMEN Procedure: Partial nephrectomy Specimen Laterality: Left TUMOR Tumor Focality: Unifocal Tumor Size: Greatest Dimension (Centimeters) - 2.6 x 1.6 x 1.4 cm Histologic Type: Clear cell renal cell carcinoma Histologic Grade (WHO / ISUP): G2, nucleoli conspicuous and visible at 400x magnification, not prominent at 100x magnification Tumor Extent: Limited to kidney Histologic Features: Sarcomatoid or rhabdoid features not identified Tumor Necrosis: Not identified Lymphatic and / or Small Vessel Vascular Invasion (excluding renal vein and its segmental branches and inferior vena cava): Not identified MARGINS Margin Status: All margins negative for invasive carcinoma
This was the end of my treatment other than follow up scans. Fast forward to this week my health anxiety has returned as well as my stomach issues. My question is could this cancer have spread from somewhere else to my kidney or would that show up differently on pathology report? Like if pancreatic cancer spread to my kidney would it still show up as kidney cancer? I know Probaly a question for my Dr but I just hate running to them all the time as I just got out of that funk.
Was informed today that I have once again beaten RCC for the fourth time!!
Scans are all clear. The mass in my liver is officially confirmed as scar tissue and “there is no active cancer!” My doctor was so haply she hugged me and my wife. I will move to 20 mg Cabometyx 5 days a week for maintenance and monitoring.
Praise God for these amazing results!
I'm not sure what I said or did to upset people to the point of downvoting one of my posts to zero, but I know when I'm not wanted. I shared something that was deeply personal, I won't do that again.
I had a right partial nephrectomy 3 weeks ago and healing has been mostly uneventful. Last week, I noticed my left breast was sore, but assumed it was hormonal shifts as I’m navigating perimenopause at age 52. Then later this week, soreness on the right side, and it feels like I may have some swelling in my right armpit. Now I’m wondering if my lymph nodes are swollen and what that could mean. My tumor was Stage I, Grade 2 and they only had to remove about 2% of my kidney as it grew outward . My doctor feels that surgery was 90+% curative. Anyone else experience lymph node swelling after PN?
I was having an annual MRA to monitor an ICA paraopthalmic aneurysm (which was found incidentally post radical nephrectomy).
Doctor called just now regarding the latest results.
The aneurysm has grown another 1.5 mm, now 5.5mm. I was preparing for a FD/coil at some stage and wasn’t too concerned.
Seems he missed the report summary where it mentioned a small mass in my posterior right frontal lobe. Contrast.
I’ve been referred back to my neurologist. No further details at this stage.
Hoping it isn’t a RCC met like they found on my thyroid this year (thyroidectomy).
Sigh.
I was not planning on joining this sub but will take some time to scroll through for relevant info.
I just found out that at the end of February a 4.6cm lesion was found on my right kidney when I went for a CT to follow up on a 9mm lesion I had since July of last year…. This 4.6cm is a new one in addition to the 1cm lesion that has stayed the same since November (it went up by 1mm between July & November but stopped growing then) my urologist made it seem like he was referring me to complex surgery to get a biopsy (I am on blood thinners due to unknown cause of thousands of micro pulmonary emboli 6 years ago & I have a very complex medical history due to surviving ewings sarcoma and the fallout from the aggressive treatment to get me through it) earlier today but when I went to schedule the referral appointment I found out this isn’t a complex surgery doc but a uro-oncologist….
It was at that point that I looked at my clinical notes and found out about the second new/bigger lesion…. Well said uro-oncologist can’t even get me in to go over my imaging until August…. I am on the waitlist…. But I am very worried…. I did ask my primary doctor to get a referral to uro-oncology closer to home (this doctor is in downtown Chicago and I am about 2.5-3 hours from there right now)…. Everything I have read is saying that it is more likely to be cancerous…. I have already seen that it is most likely to be approached by full removal of the kidney and testing after surgery to diagnose…. But I am hoping others who have been through this might be able to tell me what else to expect so I can prepare for anything that I MIGHT be facing on both ends…. If it comes back cancerous and if it doesn’t…
Any insight/recommended steps advice is greatly appreciated at this time while I am processing and trying to get things lined up to handle this the best way possible…
Thanks in advance…
TLDR: very complex medical history, doctor didn’t disclose new 4.6cm lesion, referred to uro-oncology, long wait times, worried about waiting, on wait list, need advice on best steps to take in preparation/treatment while waiting to hear back
Hello,
So some good news to start this post my dad's tumors on his lungs and kidney has shrunk with the combination of immunotherapy infusions and Inlyta. However the tumor in his neck is still growing so starting next month he will start radiation.
I really love hearing from others experiences with these combinations and while I understand every body is different and responds differently to treatments. I just want to hear from you all and maybe what to expect to come.
Overall my dad is doing better , he has gained back 20lbs. It was so hard seeing pictures of him getting thinner and his lack of mobility as my mom and him were in Texas for several months after he got his diagnosis and I just got to see him in person again for the first time in 6 months in April.
He is more mobile now but still has very little range of motion in his neck but he is still making such an effort to be as active as he can with my 2 year old son, which means more than I can describe.
Anyway I'm just rambling now.
But thank you all for the support and information you have provided so far it means so much
Hi all new this sub, was wondering if you guys could give some insight on how you felt health wise overall before and after mass removal?