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Recently diagnosed with rare Kidney Cancer

KateM16
Posts: 3
Joined: Oct 2019

Hi I'm new to this, my name is Kate and I'm 25. I was having blood in my pee and some bloating/eating issues so I went to my family doctor where I found out I had a cyst on my ovary and while doing further tests for that they found a mass on my right kidney. I was then recommended to our state hospital where my doctor looked over my xrays/CT and because of the size of my mass being a little over 9cm he highly recommended we take out my whole kidney; he wasn't for sure exactly if my mass was cancer because it was apparently odd looking with it being very smooth looking which I guess isn't normal so they had very good belief that it was benign or low staged.

I had my surgery (robotic nephrectomy) on the 8th of this October, and my pathology took a long time for my results it was supposed to be in by the 15th (5 business days after is what they told me) and we just got it back yesterday. I honestly went into shock a little after he told me I had a rare type of kidney cancer called collecting duct carcinoma which I guess only 1% worldwide has had/have. He told me it's an aggressive type that tends to come back and there's not much on it because of the rareness, he even said it was something doctors only ever really read about in textbooks but never see. Mine has not seem to have spread at all though and my phone call with him was short because I was in shock because I wasn't at all expecting it to be as serious I guess, so I didn't ask questions and my follow up for my recovery isn't until the middle of November but everything I've read online of this kind has me worried because of life span after being diagnosed with it only being a little over a year.. but that seems to be if its metastatic though so I guess I'm wondering if anyone has this as well and maybe knows a little more? On the lifespan and as well as reoccurence of it? I do have quite a lot of family members that have/had cancer including my mother who's had three kinds herself but nobody in my family has had any kinds of kidney cancer. If anyone could offer info would be amazing, thanks. 

(I have a follow up Thursday with my family doctor to check blood levels and I hope that the state hospital has sent her everything about it because I was too in shock I forgot to even ask what grade level I was in so I'm hoping she will know otherwise I could call the hospital but I feel like I would be a nuisance for it) 

stub1969's picture
stub1969
Posts: 800
Joined: Jul 2016

Welcome to the club that nobody wants to be part of:) I have a couple of questions that you didn't include in your opening.  What type of scans did your doctor do prior to surgery (CT of chest or/and abdomen?).  If you did not get these, then I'd contact your doctor to get them ordered right away.  There is no sugar-coating the seriousness of this cancer.  With the size of your tumor and the subtype, you will want to become as educated as you can about proper protocol for scans and treatment.  I'd also suggest looking into getting a referral to a doctor that specializes in kidney cancer.  

Please know that we understand your fear and shock.  All of us have been through this (although most of us were a little older).  With our background, we'd love to be part of your support system as you travel along this cancer journey.  

Blessings,

Stub

KateM16
Posts: 3
Joined: Oct 2019

I've had many tests done: the first was a chest and abdominal x-ray, then a vaginal ultrasound, CT scan (abdomina) and then MRI (Abdominal). I actually called my doctor today to talk more about it after thinking of questions to ask he told me there was no grade level for this kind just that it was high grade and as of right now they didn't see that it spread. (my aunt told me to ask about a PET scan at my next appointment?) 

I also asked about how I read online about having 12-13 months after but when it's metastatic and what that meant for me since it hasn't seemed to, and he told me he couldn't give me an answer because he was unsure since this kind does not have much information and cases to be able to give me an answer and just that they will keep a close eye on me and have frequent check ups. 

Thank you all for so much for your kind words! After talking to my doctor a little more I am still a little uneasy but feeling a little better about this all. 

APny's picture
APny
Posts: 1949
Joined: Mar 2014

I am so sorry you have to be here. I always hate seeing anyone having to join us but I especially hate it when it's someone so young. Please don't take the 1 year prognosis as a given. New treatment methods are discovered all the time so that changes things. I agree that you should seek out someone who is not only experienced with kidney cancer in general but your type in particular. Make sure you take someone with you for your follow up. The anxiety we feel can prevent us from processing all the info we're given. So it's good to have someone else listen. All the best to you and yes, we all totally get your shock and fear. 

DanielQ's picture
DanielQ
Posts: 32
Joined: Sep 2019

Hi Kate,

I am sorry about your diagnosis. I totally understand your fear and anxiety. I am at the same age as you and just recently got diagnosed with kidney cancer. I am a healthy strong guy with no family history of any type of cancer. I felt the whole world crashing when my doctor called me on the phone, telling me the worst news I ever had in my life. However, we have to be strong and fight it. 

See the 1-yr prognosis as a statistics. It's just a number averaged over many people with various conditions. Every one is different so don't be down. Good luck and you will be fine.

Daniel 

KateM16
Posts: 3
Joined: Oct 2019

Daniel,

I'm sorry to hear that, and thank you. Have you gone through surgery yet or treatment?

DanielQ's picture
DanielQ
Posts: 32
Joined: Sep 2019

Yes, I just got my surgery done this month and am now on recovery. I think surgery is the only required treatment for me, with life-time follow up scans. 

 
icemantoo's picture
icemantoo
Posts: 3227
Joined: Jan 2010

I would look intp seeing an Oncologist and Urological surgeon at a top medival facility or Medicaj school for a swcond opimion/fpllowup/ Your diagnosis deserves an expert.

 

 

 

 

 

 

 

icemantoo

eug91's picture
eug91
Posts: 156
Joined: Jan 2019

Sorry you had to join us, Kate, but this is a great group here. Congrats on getting through your neph - hopefully the healing process is going steadily for you. I confess I know nothing about your type of cancer, but please know that you're not alone - we're here for you and will try to help as best we can. 

Also, since collecting duct is so rare and getting as many perspectives as you can would be helpful, consider signing up over at smartpatients.com - another very active cancer board. 

Allochka's picture
Allochka
Posts: 871
Joined: Nov 2014

Hi Kate,

very sorry to hear about diagnosis. As previous poster said, please sign up to Smartpatients, lots of useful info is there.

Regarding 1 year prognosis. I've checked out collecting duct carcinoma online. 1 year is stated as avg survival, but it also said that more than 70 % of patients are diagnosed already with mets. So this really applies to metastatic disease. If there are no mets, the outlook is much brighter.

Several members on this board were Stage 4 at diagnosis and given about 1 year to live. Many are here, and some are even without evidence of disease! Our Donna, for example.

I know it is easy to say, but please do not accept what you read online as an expiry date. It is not applicable to YOU!

Hugs,

Alla 

Deanie0916
Posts: 259
Joined: Nov 2016

Sorry to hear about this. We will pray and support you as much as we can. Iceman has good advice, try to see the best oncologists who has experience with this type of cancer. Love and good thoughts to you.

en8236
Posts: 29
Joined: Dec 2017

I would reach out to the top research institutes like sloan/mayo/md anderson etc which is closest to you. The 1% population you are mentioning, majority of them must have been through the big institutes. Also whatever limited research has been conducted on this sub type, there is big chance that these institutes have done that. Do not let this pull you down, rather put your energy in driving your treatment. Best of luck.

jason.2835
Posts: 337
Joined: Nov 2014

Hi, Kate,

I echo what others have already said; seek out the top experts in your region as your cancer is rare and aggressive.  There are so many new drugs and treatments out there that us peons probably couldn't even pronounce.  That being said, you are young and if the cancer was found early than you should keep your thoughts positive.  

- Jay

nehagill's picture
nehagill
Posts: 8
Joined: Nov 2019

Hello Kate, I am glad that your surgery was done before the tumor could spread to any other part of the body or even extended to the kidney. How was your meeting with the oncologist on Thursday? Any insights or any furtehr information?

Though I understand the fear to be part of a Cancer about which little is known but tell me how much do you think doctors know about lung or breast cancers which are most commonly encountered cancers? Or how sure are they about the treatment plan and the results? Is the prognosis 100%? The answer to this is no. There are certain protocols to be followed when treating cancer and I am sure your doctor is going to follow them in accordance with your age, response to treatment, aggresiveness of tumor and alsio the stage. I am glad for now there is nothing much to worry about as the tumor mass is away from you.

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