CSN Login
Members Online: 3

You are here

I am new here

Seanjg
Posts: 21
Joined: Aug 2020

Hello

My name is Sean. After a CT scan for an unrelated issue they discovered a 1.7cm growth in my kidney, all other organs fine including lymph nodes and veins. Possible RCC or oncocytoma.  Waiting to see a specialist.  This has definitely been the toughest week of my life to date and I cannot help but think that I am in big trouble here. Its been uplifting to read all your stories so thank you for providing them. Ive got 2 kids that im just so close with and im just so worried that i won't be there for them. Thank you for the space to share

Seanjg
Posts: 21
Joined: Aug 2020

Has anyone had similar experience?? Im really struggling

Deanie0916
Posts: 320
Joined: Nov 2016

Sorry to hear you are in this place where no one really wants to be. Like Bay Area Guy said the growth is small and caught early so that is really a good thing. My thoughts and prayers go out to you as you wait. Keep us updated!

Bay Area Guy's picture
Bay Area Guy
Posts: 449
Joined: Jun 2016

Very similar 3xperience, including the size.  Mine was found because a routine physical and all the related tests found I had a microscopic amount of blood in my urine.  My primary doc referred me for a CT, thinking it might be a kidney stone.  Surprise, it came back as a 1.7cm lesion, suspicious for RCC.  My doc got me a referral to Stanford and I had a great urologic oncologist.  Because it was so small, he recommended active surveillance, meaning scans every six months to see if it changed.  That was December, 2013.  In April, 2016, an ultrasound determined it had changed (grew to 1.8cm in 2-1/2 years), so he referred me to a surgeon and he took it out with minimally invasive robotic surgery.  While no surgery is fun (and I've had two open abdominal surgeries in my life and those HURT), this one is a lot milder.  I was in the hospital overnight and while they gave me pain meds to take home, I never had to use them (but I have a pretty high pain threshold).

You think you might be in trouble but, in reality, just like me, you're really lucky.  This was found quite by accident, but it was found VERY early, meaning that if it is, in fact, RCC, surgery is curative in a huge percentage of the cases.  I won't say don't worry, but I will say that treatments for RCC have gotten vastly better over the last decade and with the size of your possible lesion, all indications are that treatment will take care of it and you'll be able to let your kids drive you crazy for a very long time to come.

Seanjg
Posts: 21
Joined: Aug 2020

Thanks so much for your reply and sharing some of your story with me. I am seeing my Urologist this afternoon to discuss my report. Im not sure if I could psychologically cope with Active surveillance but I will do what is recommended. Ive never had surgery or even been under anaesthesia before so im pretty worried about that as well. Ive barely slept over the last week and have been in great distress. Your words have helped and so once again thankyou. I REALLY appreciate it

Bay Area Guy's picture
Bay Area Guy
Posts: 449
Joined: Jun 2016

The doc I had at Stanford recommended active surveillance, but he also said that if I could not handle it psychologically, he could refer me to surgery right away.  Him saying that gave me an incredible amount of comfort and confidence in him.  I did ask if there was any danger of the lesion spreading to other areas or growing out of control.  He said that while there was a chance of that, it was a very, very small chance and that the six month scans would catch it.

Please let us know how your appointment goes.

Julio25
Posts: 2
Joined: Sep 2020

Thank you for this information.  I am also new and they found mine at 1.5 cm due to getting with a Mri for chrohns.  Luckily no chrohns but this has been a horrible 3 days. My mind racing back and forth. Thank you for sharing as it has eased my mind. It worries me because I am 36 and one child 

icemantoo's picture
icemantoo
Posts: 3279
Joined: Jan 2010

A little tumor that size (and we arem't there yet) is 100% curable. You will be fine. Depending on their age you will be there for your childre's and grandchildren's weddings.

 

 

 

icemantoo

 

AliceB1950's picture
AliceB1950
Posts: 70
Joined: Jun 2019

Your tumor is quite small and early stage. Stage 1 is anything under 7 cm, so yours is REALLY small for a kidney cancer.  Mine was exactly 7 cm, so on the cusp of stage 1 and 2, and I was in the hospital just one night after a total nephrectomy.  I was (slowly) hiking in the woods the next week - and I'm old and out of shape.  This was about my ninth surgery overall, and not nearly as painful or complicated as the hip replacement I had 10 years ago.  Best advice I ever got (for a different surgery the same year): You don't have to be brave, you just have to show up.

Seanjg
Posts: 21
Joined: Aug 2020

Thanks for all your kind and wise words. They mean a lot

eug91's picture
eug91
Posts: 254
Joined: Jan 2019

Sorry you had to join us, but it's a great group here. We know what you're going through, so we know you're going to do great. We're here for you if you have questions or just need to vent. 

The worry and the struggle are normal. There'd be something wrong with you if you DIDN'T worry. But as the others have already said, you're very lucky that your tumor was caught so early before it's large enough where it could spread. 

As for surgery and anesthesia and all, I was in the same boat. Before I was diagnosed, I'd never had surgery before, never had a serious injury, never stayed overnight in a hospital, never rode in a wheelchair, etc. And as silly as it seems now looking back, I was worried about having a nightmare reaction to anesthesia and never falling asleep or never waking up. But the great thing is that we live in an amazing age of advanced medical technology - the science in treating kidney cancer has gotten SO GOOD in the last few years, with new procedures and treatments and recovery times. As you slowly learn about this stuff, you'll see that you have a lot of reasons to be positive and optimistic. It's obviously scary now, but try not to let the fears get to you. Just take everything one day at a time, one step at a time. 

And I totally get what you mean about being scared for your kids. But since you caught yours early so early, you're going to be around for your kids for a long time. 

We're here for you. You've got this!

Mmoses25
Posts: 62
Joined: May 2020

Your going to see your kids get married don't worry

jag28
Posts: 3
Joined: Aug 2020

I'm also new here and I believe I understand how you feel. I survived Stage III Renal Cell Carcinoma sugery.

I remember feeling sharp back pains. I thought it was part of a back problem I had, I did not get it checked. 6 months later, I had a very stressful day at work. Later that day urinated blood. It took 2 weeks to see my primary doctor (no further espisodes of the blood). I was scheduled for a CT Scan. Well, I met with a Urologist. I had a tumor 17cm covering half my left kidney and said it was 90% cancerous. Well ... I was in shocked. I blacked out when he was talking (my daughter took notes). I was really scare.

Well, I had a Radical NEPHRECTOMY and lost my kidney. The tumor and 5 lymph nodes were taken out. I had a biopsy after the surgery, not before. The outcome ... T3a N0, grade 2/4, and no spread to the lymph nodes. No further treatment was needed after the surgery (no chemo, no radiation). I have been cancer free for 20 months, but still get CT scans as follow-ups.

If the doctor found your tumor, small in size (under 4cm), I believe the can perform a partial Nephrectomy. If they caught it early, it's a very good thing! But, it depends in the location of the tumor. My was not in the Adrenal Gland, nor in a major vein. Yes, 17cm by 14cm ... and I was very lucky. I sometimes feel blessed to still be alive, the doctor caught it before it spread. 

Surgical approaches have advanced. They use cameras to perform surgery and minimise recovery. I had a 5 hour surgery, with 24 staples (5 incisions) ... and a 8 inch scare. Your surgery ... will much easier! Talk to doctors, keep your family very close. My wife and 2 kids are everything to me (my daughter stayed with me 3 days during my recovery. It was so important for me to have her there late night (she slept in the hospital sofa). You family is your most important support structure. 

 

 

Now, I wanted to help others with cancer. For the last two years, I have sponsor Toy Drives for the Rady's Children Hospital.

Yes ... SeanJG, stay positive and believe you will make it though this. Keep your family close. And don't waste time looking at all the cancer websites. Just be prepared of what questions to asked your specialist. They will show you the CT scan so you can see the size and location of the tumor. Ask about treatment (if needed) after surgery. Expect to have CT scans, every 6 months, for the next 2 years. Recovery time can be good (2 - 3 weeks).

Seanjg
Posts: 21
Joined: Aug 2020

Thank you so much for your words 

stub1969's picture
stub1969
Posts: 864
Joined: Jul 2016

The intense uncertainty.  The sense of loss of your "old (healthy) self". The concern for your loved ones.  All of this mixed together into a big gobbledygook of emotions.  Don't worry, this is normal...we all felt it.  You've received some great advice from our members.  They are a group of very caring people willing to help others.  So, my message to you, lean on us with questions.  We'll help as much as you want us to.  

Stub

Subscribe to Comments for "I am new here"