Kidney Cancer
My journey started mid-March. In a visit with my PC doctor I mentioned having a tender area in the left kidney area of my back. The ultrasound showed a 1x1 area that was possibly an angiomyolipoma in the upper pole of the left kidney and CT was recommended. CT was done with and without contrast…it showed a small (5mm) area on the left kidney, probably a lipoma, but it also showed a 1.1 cm enhanced nodule on the right kidney suspicious for carcinoma. The urologist I saw as a result of those findings said he is 85-90% sure it’s cancer, and recommended a MRI be done prior to a follow-up visit with him in August. Needless to say I was shocked and not prepared with questions for him. I’ve called their office 3 times now to try to discuss a bit more; left messages, but no call back from anyone. Biopsy is out of the question for fear the cells will spread if it is cancer. My mother died from cancer that started in a kidney, then spread to a lung and then her brain. Thus, I would think the place needs to come out to firm one way or the other that it’s cancer, and if it is, the sooner it’s out, the less opportunity for it to spread. Thankfully it’s still a small place and there were no signs of adenopathy. Any advice?
Comments
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Finding an enhanced mass suspicious of RCC is always scared news. Because it is still very small, depending on your age and health, you could opt to watch it for a while, but if you are young and healthy you should probably just take it out.
Fortunately, a mass of this size typically does not require open surgery. You should consult with a urologic oncologist who is very experienced with robotic partial nephrectomies. Opting for the robotic approach offers a less invasive surgical method and results in a much faster recovery time and less pain.
While it's natural to feel scared, I want to reassure you that you are actually in a better position than most people diagnosed with likely RCC. In your case, it is very unlikely to have metastasized and surgery will likely be curative.
Please remember that you are not alone in this journey. The survivors network is filled with individuals who understand and support each other through these challenges. If you have any questions or need further support, please don't hesitate to reach out to us.
Wishing you strength and positivity as you navigate your treatment.
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Thanks for your response and encouragement. I’m 71 and in good health other than a few arthritic aches and pains, and really would not have known about the right kidney lesion if I had not noticed pain in the left kidney area, which started the testing. I’m meeting with my primary care doctor tomorrow to review everything…I really trust his opinion, and even though the area is small right now, I just don’t want to wait too long to have it removed…I don’t want it to spread. The urologist didn’t tell me what type of cancer he thinks it is and I didn’t know at the time to even ask him!
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Hi lg7000-
Sorry you had to join our club - nobody wants to hear the "c" word, but I'm glad you found this forum. It's a great group here. We've been through what you're going through, so we know you're going to do great. We're here for you.
Agree with everything nephronaut said above. You are fortunate that you caught it early. With your carcinoma under 4cm, the risk of spread is low/nil. And with your good health and the advances in medicine and tech, the odds are really in your favor. You have a lot of reason to be positive!
You're gonna do great. You've got this!
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I did write a long email letting you know the process I went through, but I haven't been here long enough to post links, even though there are no links in what I was trying to send. It also isn't saving it as a draft.
But the short of it was, be your own advocate. If you doctors aren't listening, go to someone else. My tumor was found by chance. I had right side pain, but that wasn't why I was in to see the urologist. The CT found it, CT with contrast confirmed it. The initial CT was Mar 30th, surgery was May 16th. My tumor was 5.2CM by 4.8CM.
MRIs are expensive, so maybe your insurance is pushing back, so I would push for a CT. My other post had pictures of both of my scans, so you could see the difference.
Doctors don't always take women serious enough, they work for you, not the other way around. Tell them you want them to do what you want. Tell them you want to know why it isn't happening and if it doesn't happen, go to another Urologist.
My longer post had so much more in it, hopefully I can actually post it some time. I can't copy it out, and it won't save it as a draft...
Mike
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Hi lg. Sorry you have to be here. I was in a similar situation in late 2013, when a 1.5cm growth was spotted via CT. I was referred to a urologic oncologist who advised active surveillance (scans every six months to see if there was growth). He said not all of these are malignant and that he did not want to potentially affect my kidney function by taking it out and finding it was benign. And when I asked, he said they rarely grow fast and rarely spread when they’re this small. However, he also said that if I could not handle it being inside, he could arrange to take it out. I decided to follow his recommendation. I had scans every six months for 2-1/2 years until an ultrasound showed growth. I had surgery in June, 2016 and it measured 1.7cm.
The decision is yours. Doctors can advise, but in the end, it’s up to you to do what you feel is in your best interest. If you don’t like the idea of it being there, tell the doctor you want it out.
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After a visit with my Primary Care, he has scheduled me for a kidney MRI, which hopefully will give a clearer picture of the nodule on the right kidney that is suspicious for carcinoma, as well as clarify the area on the left kidney that shows one thing on the ultrasound and something different on the CT scan.
Thanks so much for your comments and advice! So glad I found this site!
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I really wish I could post pictures, but it tells me I can't post links as I haven't been around long enough. The difference from a CT and a CT with contrast is almost night and day.
Also, the radiologist will always say, "suspicious", "most likely", etc.
I was first told I might have cancer when I was 22. I laughed at the doctor, which got me a funny look. Partially because I was a Specialist in the Army and he was an Officer, but I explained my mom passed from colon cancer 5 years prior after fighting for 5 years, she was 43, just a couple months shy of her 44th birthday. So it was ironic that at 22 I might have some sort of intestinal cancer, 5 years after her death at half her age.
I didn't have it, although I have had pre-cancerous polyps removed a number of times during colonoscopies.
I don't know if I am just weird or if it was my training but I tend to gloss over the problem and go straight to "what do we do to fix it?". I work in IT now, and have for over 3 decades and I am one of those, bring me solutions, not problems type of guys. To me problems are just symptoms, we hear it once then don't need to hear it again. Some IT people will keep repeating their issue, over and over, and over again. It only wastes time.
I am glad you got ahold of your doctor, keep on them. If yours is small, you'll be like Bay and I, like a one and done beer at the bar. Almost like it never happened. Then, as a survivor, you can get on other people about caring for themselves.
Mike
Bay, if you read this, I was born in Mountain View, lived in San Leandro for 6yrs, '66-'72. I have family all over the Bay area. I live in WA now, but was a world traveler for a bit.
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i have made the decision to have robotic surgery to remove the small suspicious area from my right kidney. Hopefully it will not be cancer, but if it is, at least it will be out and hopefully never to show up again. Kidney issues, including cancer, run in my family, so I’m not taking any chances. Based on other’s comments and the research I’ve done, recovery time should be easier with robotic surgery.
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I had robotic, recovery was a week. My tumor was 5.2x5.8x4.8cm after it was out. You will never hear a doctor tell you it is cancer from imaging. They will only tell you after it has been biopsied. So if they are saying they think it might possibly be cancer, getting it out is a good choice. Especially with a family history. I didn't have a family history. Mine is probably from some military exposure. Which just means I get to fight with the VA more.
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Hi - my first post. I'm 57, I had my 2nd bout with cancer over the past year, stage 3 Kidney cancer is what they said, It was basically a tumor on the whole kidney. I found out on March 20th 2022. My Birthday, turned 56. My left kidney, it has been removed. the first time was non-Hodgkin's lymphoma, 17 years ago. My Dr said though my treatment that I'm cancer free as of June this year. But this time around I don't feel like celebrating. During treatment we lost several good friends (1 to cancer) and 3 family members - my father, my father in-law and an aunt. A bad year. I also made a lot of bad financial decisions (thinking the end was near) that now, my family may be displaced from their home. I feel hopeless and ashamed for what I've put my family through - twice. My kids were young the first time and I know its had a lasting affect on them. all to often I feel as if I should have died. Does anyone know if this this common, this feeling. It feels like I'm the only one.
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I was already suffering from severe depression & anxiety disorder with suicidal ideations. Ironically enough, at the end of 2018 I lost my mother in law, my step-sister (both to cancer), and my dad passed on Sept 1st.
I found out about my kidney cancer in Mar 2023 and it was removed in May 2023. Due to the size they believe I had it for about 6 years. Follow up CT showed a cyst with some possible growth, but it's too small to biopsy so we wait.
On top of all that my step-daughter's kids and their dad moved in, she was a drug addict. I did suggest it as it was the only way I could see to break the cycle and seemed like the only chance to get her out of drugs. Well the father of her kids was a real peach. I didn't ask for anything for the first few months, then started asking for $800/mo to cover everything for him and 3 boys, one just becoming a teenager. I also co-signed on a car loan, allowed him to put the car on my insurance, drastically reducing what he would have normally paid. Well, rather than save up the first few months, he blows his paychecks on buying just a bunch of unneeded crap. Then he loses his job, right after he got brand new phones for him and the eldest.
I had to pay that car payment that month. He did get a job about 2 months after losing the first. I'd been paying his portion of his car insurance as well. That's when he was supposed to start paying rent. He forgot a lot. He would think, unclogging a toilet clogged by himself or one of the boys was enough to cover the rent, fair exchange and all. Same with doing the yard, which is really small. It got done maybe 3 times in the summer. When he moved out he owed me $4,500 and told me I helped him out the most as he had the most in his bank account, just over $4,500. I asked how could he have that, if that is what he owed me. He said it was because I told him to pay me last. Yeah, last as in high to low interest, then me, then save.
During that time I moved my father in law in. That cost about $10k, then I helped him get a new truck (first new vehicle in his life at age 79). I gave him $5k down payment and co-signed. I pay for the storage shed, $200/mo, for his stuff.
I'm also a 90% disabled vet fighting the VA for that final increase to 100%, but the EPA isn't going to re-occupy their buildings until Dec 2023 and the EPA report I need to show I was exposed to chemicals known to cause kidney cancer I won't get for a while yet.
So, I too struggle financially. The rest of my family doesn't help. My daughter has Asperger's at least she doesn't spend crazy. My wife doesn't think about money and just spends. The hole it getting deeper and I am not sure how much longer I can hold be the flood myself.
It seams life tests us, I started a business, investing a good amount of money last Oct, completed the training in Dec, started setting everything up in Jan and Feb. I had a company working on the website in March, which is when I found out about my cancer.
You are not alone, and it really sucks. I am in a low place and not seeing and good paths out. But I am trying to hold out until one presents itself.
Mike
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Hi Mike,
Thank you for sharing your story. I also started a business this year, and in my hast to do something good for my family, May have been a bad decision. I served in the USMCR, and have a pending case with the Camp Lejeune water contamination, as the VA declined my first attempt for help. I know this feeling - suffering from severe depression & anxiety disorder with suicidal ideations. I to am in a low place, and hoping for a path to present itself.
Thanks again, Its good to talk with someone who knows, my friends and family don't know how it feels.
Paul
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Thanks for checking, the after surgery CT shows they got all the cancer. But, this cyst at the top of the kidney has some growth inside. It's too small to biopsy so we are waiting until it grows more. You that makes me feel great, right!
My right side is still sore, which is longer than it should be sore. Mostly when I bend or twist.
Waiting is the worst.
Mike
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That's good news the CT shows they got the cancer. I'm guessing the blood tests are good as well. Still a lot of concern about the cyst. I was given Keytruda (cancer immunotherapy) for 1 year after my surgery. Has your Doctors said anything about this? I wonder if it wouldn't help with the cyst.
I was sore for a number of months as well, gets better in time.
Ya - I understand about the waiting. I'm here, if you ever need it.
I'll check in again some time.
Paul
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A quick update on my kidney cancer scare. I had a partial nephrectomy on my right kidney, and thankfully it was not cancer. Per my doctor’s description, it was an atypical angiomyolipoma, which can mimic cancer, and being atypical, based on what I’ve read, could become cancerous down the road. I’m glad I had it removed. Once I got through the first couple of weeks after surgery, I’ve gradually gotten back to normal activities. I still have a place on the left kidney that is tender, but we’re keeping check on things. I’ll have an ultrasound in February and see how things look.
Thanks to all who have offered advice and encouragement!
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Hi,
My update, I've taken another job. working 1st and 2nd shifts. hopeful help pay for everything so my family can still live in our home. I forgot to go to my CT scan. My Dr. canceled the appointment for this Monday. almost feels like I can't do anything right. I'll call them Monday and reschedule everything. ever since my 2nd Cancer in 2022, I don't seem to be able to make good decisions or remember things, I can't focus right. I think the Katruda did something to my lungs. I'm feeling like I have asthma, trouble breathing. guess another Dr's visit is in order.
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Hang in there, you are not alone. Being a 90% disabled veteran and having kidney cancer I take a lot of medications. I also take care of just about everything for my family, at least financially or anything big. I forget things more and more. I still have claims I need to put in for my military time, which I really should have done long ago, but I forget about some of those too. Then there are the semi new and frustrating things like the random twitching, tremor that comes and goes, my asthma acting up more and more. Possible toxic exposure which might have led to my kidney cancer.
I am the only one who works, so I have a lot of pressure, which doesn't help. Sounds like you are in the same boat.
I can't remember if we talked about this before, but did you ever serve? If you did, maybe there's some benefits you can receive that way. I see there are ways to file for SSDI when you have cancer, but I don't know how that would work out for you.
I wish there was more I could do to help.
Mike
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Hi Mike,
Thanks for your the reply. I don't get on the email much with the 2 jobs.
Thank you for your service.
Yes I served in the Marine Corps Reserve in the 80's then I reenlisted years later in Coast Guard Reserve. Its believed my 2 Cancers were from exposure to contaminated water at Camp Lejeune NC. My first attempt with the VA was denied in 2016. I currently am working with a lawyer on on a law suit with thousands of other people.
I was able to get my CT scan order for this Wednesday and the Dr's appointment on Thursday.
I'm sorry to hear you not only had the cancer but the twitching, tremors and asthma as well. Your 90% disabled, I hope your able to get VA assistance.
for me not being able to focus and remember things like I should, lots changed in the last year and half. I know I'm not in a good space mentally. can't shake the feeling that I'm high risk for another cancer and how long do I have. but every day I keep trying to do the right thing. I'll see what tomorrow has to bring.
Thanks Mike, you've done more than know.
Paul
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