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RCC at 28 years

groshi
Posts: 2
Joined: Jun 2018

Hi everyone,

My 28 year old wife has been diagnosed in December 2017 with a big kidney tumour (12cm/5inches). This happend after she experienced some pain on the right side of her abdomen (found out later it was gallblader issue), made an MRI and we were shocked about the presence of this tumour. She didn't experience any other symptoms, blood tests were 100% ok. She underwent radical nephrectomy at a short time after. It was clear cell RCC T3a Fuhrman grade 3 with microscopic invasion of the fat surrounding the kidney, no invasion of the big blood vessels. She recovered quite well after surgery but she still has some pain on the right side (incision side). Last MRI and CT scan made in March with no signs of reccurence or dissemination. 

I was told about the high risk of reccurence and I can not take that thought off my mind. We try to live life to the max, and spend as much possible time with our 3 year old daughter. My wife is currently under no treatment and hope that she will never be. 

I really don't know what to expect in the future.

Best regards to you all. 

Sorry for any mistakes. English is not my native language.

 

a_oaklee
Posts: 436
Joined: Nov 2013

I'm very sorry that your wife is so young having to go through everything she has thus far.  Im glad your wife had repeat scans done at 3 months.  They should be repeated in another 3 months and include chest, abdomen and pelvis.  You might also want to consider seeing an RCC specialist because of the fact that she is so young.  Smart patients is a good site for guidance on what to do now.  If you are in the US, some people go to NIH for their care, as they look into genetic factors.  I'm happy for you that she got her surgery and the scans are clear.  Live life and enjoy, but keep monitoring.

icemantoo's picture
icemantoo
Posts: 3208
Joined: Jan 2010

groshi,

 

 

So sorry to hear this struck so young.  The gallbladder pain appears to have helped in the diagnosis.

 

icemantoo

Allochka's picture
Allochka
Posts: 861
Joined: Nov 2014

Sorry for that...

But the big size/grade doesn't 100% guarantee the recurrence. Our Jojo on Forough here had similar size tumors several years ago, they are NED and doing great!

a_oaklee is right, your wife should be monitored very closely, for a long time (forever?) and in the beginning at more frequency. Find a good specialist, never skip scans, don't allow any doctor to persuade you that no more scans are needed, and live life! And things will be under control.

Good health to your wife,

Alla

foroughsh's picture
foroughsh
Posts: 775
Joined: Oct 2014

I was diagnosed almost 4 years ago at the age of 36. I had a large 10cm tumor with almost no symptoms, I got rid of it the day after diagnosis and since then I'm following it up. Don't let the size or grade terrifies you. She is young and healthy other than that tumor so be positive that her immune system knows how to protect her. Stay vigilant from now on. Find an oncologist with kidney cancer speciality who know how to stay on top of everything, don't accept the phrase "we got it all, you're cured", we need to be vigilant for the rest of out long-to-be life

She is so young so I think it's good to have a genetic test too

 

CRashster's picture
CRashster
Posts: 229
Joined: Mar 2017

my tumor was 10cm and classified T3a. It’s been two years. expect the best for the future. I do.

NewDay's picture
NewDay
Posts: 273
Joined: May 2012

groshi,

That is VERY young for kidney cancer and that often indicate it is genetic.  I really recommend that you contact NIH because they specialize is hereditary RCC.  If they want to see her, they will perform genetic tests and probably run a second opinion on the pathology at no cost.  If more treatment is needed in the future, it is important to be certain of the subtype and whether it is hereditary.  You can contact Debbie Nielsen at NIH at 301-451-4093.

Manufred's picture
Manufred
Posts: 239
Joined: May 2017

Unfortunately I agree with NewDay that this may idicate an heriditary syndrome.

I quote "In general, hereditary renal cancer presents at an early age and is often multifocal and/or bilateral. Notably, each condition is characterized by a predominant histological subtype of cancer, for example, Von Hippel-Lindau disease is characterized by multiple, early-onset, clear cell renal tumours".

Get this sorted out so at least you know where you stand for the long run.  Can I ask where you live?

And stay abreast of developments.  New therapies are coming on-line at a rapid rate. Give science a chance.

Best wishes, Fred

NewDay's picture
NewDay
Posts: 273
Joined: May 2012

groshi,

One other reason to consider contacting NIH for testing is that, if your wife has a genetic type of RCC, it might be a good idea for your daughter and future children to be scanned when they are older.

groshi
Posts: 2
Joined: Jun 2018

Hi,

We are not in/from the US. If it were to be genetic shouldn't be more cases in the family? 

The good thing is that this morning Daniela had the chest, abdomen and pelvis CT, results came in this afternoon and we are NED.  She was scheduled for another CT scan in January.

Thank you all for your replies and advice!

 

Manufred's picture
Manufred
Posts: 239
Joined: May 2017

Groshi,

I am not a geneticist, so this is only supposition on my part.

I am Dutch by birth and live in Australia.  I find it interesting that when I research kidney disease on the web, the Dutch experience is all about the genetic syndromes such as von-Hippel Lindau disease, and an early diognosis by one of my radiologists was possible Birt-Hogg-Dube syndrome, which was never followed up as I enrolled in a clinical trial of combination immunotherapy, which seems to have worked.  These things are far less commonly mentioned in the US medical literature, although you will find them if you look hard enough.

So I wonder if perhaps some populations such as North-Western Europeans have something in their genetic make-up, or if there is (or has been) a broad environmental exposure (would have to be early age for me) that triggers a latent genetic susceptibity we all have?  Food for thought and at some time in the future science will no doubt be able to answer these questions. 

So an epidemiological hereditary tendency or broad susceptibilty may not always show up in your family history, but might manifest in the stats of a particular country or region.

Maybe I am completely wrong on this, but I still think it is worth your while to get it investigated.

Best Wishes,

Fred

Hoss79's picture
Hoss79
Posts: 78
Joined: Nov 2017

Awesome news on the NED!!

Gtngbtr58 @aol.com's picture
Gtngbtr58 @aol.com
Posts: 204
Joined: Oct 2017

28 is young-try to keep a positive attitude-It took me some time to do so-but no one is rushing you.  Your life has changed but it doesn't have to be scary-eventually with the help of g-d and the people here you should be close to you're old self.  All the BEST -June

 

Cinnamongirl's picture
Cinnamongirl
Posts: 199
Joined: Jan 2018

I was diagnosed in Nov of 2017 with a 13 cm tumor which was removed in Dec. I was staged 2b grade 3. I have been NED so far with scans every 3 mos.

Wishing you continued NED forever.

Cin

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