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Well, here I am...somewhere I never thought I'd be

TillieSOK's picture
TillieSOK
Posts: 252
Joined: Jul 2013

Hi all.  My name is Tillie and I am 3 months post radical nephrectomy (right kidney) with a diagnosis of Chromophobe carcinoma.  I've been looking for someplace where I could read and learn and maybe whine a bit every once in a while. :). Right now, I'm still anemic and tired to the bone, because my left kidney hasn't picked up the slack yet, I guess.  My surgeon has no bedside manner in that he doesn't tell me what to expect.  My tumor was found quite by accident.  Was just under 6cm size and while it was fully contained in the kidney, it had just barely started into the Renal vein.  It was situated smack on the center line of the kidney.  They did get clear margins.  So, what do I do now?  The oncologist in SWFL suggested CT scans and chest X-rays every three months for the first year, every 4 months for the second yr, then twice a yr in the third year, so that if it does return they can catch it quickly.  I also have what appears to be a half dollar size "probable hemangioma" on the right anterior lobe of my liver, that the surgeon wants to "watch for awhile".  I'm kind of scared and kind of angry and hope I'm not alone in these feelings.

icemantoo's picture
icemantoo
Posts: 3255
Joined: Jan 2010

Tille,

 

Not fun being told you have Kidney Cancer and than major surgery right out of the gate, It sure wasn't fun for me 11 years ago. Sorry but I have no insight into  your liver issue as that is above my pay grade,

 

Your scan schedule sounds normal Hopefully the surgery will be a total cure. It was for me and the 4.2 cm bugger that once was an uninvited guest in my body will never return..

Like the surgery as you can see, the recovery is no fun either. It is effected by other health issues as well. Hopefully in a few weeks and months you can enjoy and participate is some of the humor we share about our experiences.

 

Icemantoo

TillieSOK's picture
TillieSOK
Posts: 252
Joined: Jul 2013

Thank you.  Right now I'm also waiting for a genetics test to come back to see if I test positive for the BHD gene, and if I have to tell my kids that their kidneys might be in jeopardy, because of something I've passed on to them.  The doctors tell me that Chromophobe is the rarest kind of KC, but also the " best" one to have if you have to have one.  From what I've been told and read, it's also about 90% bilateral.  The fun on this ride just never stops, huh?  I've been reading about Fox's treatments with IL-2.  It sounds a lot like what my husband endured when he went through Alpha2b peg Interferon with ribiviran for 48 weeks.

i guess I just need a place where I can learn and can talk about this. My husband doesn't want me to talk about it much, if at all. I went from thinking I had a gallbladder problem and back pain one day to an ultrasound, then a CT, then an MRI then surgery in less than 3 weeks.  

 

Again, thanks for responding.

Texas_wedge's picture
Texas_wedge
Posts: 2799
Joined: Nov 2011

Yes, Tillie - you've come to a good place and you can vent, ask and answer questions, joke, whatever you like, in fact, in good company, without bothering your Husband (who must feel he's had plenty of this stuff in the past after 4 years on Interferon alpha!).  You've plainly spent some good time here already since you've joined the ranks of those of us (nearly everyone I guess)

Thank you for your info, which fits interestingly well into my database!  Just one item - please confirm that you're based in the US.  You're the first person in the db who is blood group 0 -  apart from myself.  It would be interesting if you test positive for BHD but it's very unlikely.

There is a higher likelihood of bi-laterality but I don't think the figure of 90% is near the mark.  You were correctly told that chRCC is the best to have from the 'menu' of RCC (unless it turns sarcomatoid, as in my case, when it becomes the worst prognosis possible - but, thankfully you're not in that boat and won't be).  However, it's not true, as you were told, that chRCC is the rarest from of k c - very far from it, in fact - but there's no denying that it is one of the rarest forms of a cancer that is already less common than all the 'big' ones, so we're certainly a rare breed!

Looking forward to hearing more from you and learning together, meanwhile, stay well.

 

TillieSOK's picture
TillieSOK
Posts: 252
Joined: Jul 2013

Yes, I am in the US.  I'm located just outside Ft. Myers/Cape CoraI, FL.  I'm also hoping I don't test positive for the BHD gene, but have 2 of the 3 main markers for it....so my blood is at Emory University being run through the mill.  And I'm Interested to learn that there is another form of KC with a smaller percentage than 3-5%. 

This has been a crappy year.  I have a brother in law with Multiple Myeloma, another brother in law that has beaten Squamous cell esphogeal cancer, only to develop very aggressive alzheimers, a nephew (8 yrs old) with Burkitts Lymphoma,  and lost my sister to small cell lung cancer last September...then my diagnosis.  I was a mess for a couple of days...but thankfully didn't have time to get totally scared out of my mind before the surgery was over.

Texas_wedge's picture
Texas_wedge
Posts: 2799
Joined: Nov 2011

Tillie, thanks for that.

I don't have time to go into it very thoroughly right now but this item is doubtless about right on percentages (I can't vouch for the provenance but the figures look correct, from memory and I've read them many times in various sources).

http://survivekidneycancer.wordpress.com/2010/07/14/subtypes-of-renal-cell-carcinoma-rcc/

This is only part of the story, though.  As you can see, there are several forms of RCC rarer than chRCC .  However, RCC is the commonest form of kidney cancer and there other, much rarer forms of kidney cancer than RCC.  From memory, RCC accounts for around 80% of kidney cancers but I'm afraid I don't recall how many types of K C there are apart from RCC.

 

 

TillieSOK's picture
TillieSOK
Posts: 252
Joined: Jul 2013

Thanks for that info.  I'm building quite a folder to read.

GSRon's picture
GSRon
Posts: 1304
Joined: Jan 2013

As we all say.. welcome to a club that no one wants to join...  Yes it is scarey.. but it usually will get better over time..  Early detection is helpful...  And it really sounds like the follow up is reasonable...

I did a google search and found this:  http://www.nlm.nih.gov/medlineplus/ency/article/000243.htm   I hope that helps...

Ron

TillieSOK's picture
TillieSOK
Posts: 252
Joined: Jul 2013

Thank you, Ron.  Yes, that answered some questions I had, and calmed some fears.

MDCinSC's picture
MDCinSC
Posts: 574
Joined: Feb 2013

Sounds like you had your radical about the same time I had mine.  It was a dizzying ride wasn't it?

You have, as the old knight in the classic Indiana Jones and the Last Crusade said, "Chosen, wisely."

I am sorry for the need to join but glad you found us.  I came here pre-nephrectomy a horrified, anxious mess.  The folks here helped me face the realities of my situation and propped me up with good advice and unending support.  While I often come up short on the advice end of things, I am a very vocal cheerleader.  We all find our niches here.

Pull up your chair to the table and dig in.  We are all here to pass news, support, information and good cheer.

Don't be a stranger!

Michael

alice124's picture
alice124
Posts: 898
Joined: Mar 2012

Tillie,

Whine away. You certainly have the right to do so; your year has sucked!

As way of introduction, my husband, John’s (a.k.a. one putt) is the KC member (clear cell) with the visible scars from a nephrectomy in November 2011.  My scars, as his spouse, are more of the mental/emotional variety, but we both receive a great deal of solace being members of this group. I hope you too take advantage of the mountains of caring, compassionate people that make up this support group and come back as frequently as you wish, using and abusing our shoulders and ears.

 One point I want to mention is your probable hemangioma, A possible liver hemangioma has been mentioned in about 50% of John’s scans over the past year.  In the other 50%, the radiologists will note no evidence of hemangioma noted on previous scan. John’s doctor consistently discounts the mention saying he doesn’t believe it’s anything to be concerned about.  I just mention that to possibly ease your degree of concern.

Again, we’re here when and if you need us. We understand the worry and fright in a new diagnosis. Let us help you.

TillieSOK's picture
TillieSOK
Posts: 252
Joined: Jul 2013

Thank you, Alice. I'm not nearly so worried about the hemangioma after reading that they're usually non-malignant tumors.  This has shown up on both CTs, the MRI, and even on the initial ultrasound when they found the tumor.  The surgeon checked my liver while he was in here and said he was pretty positive it was an hemangioma, but we would keep a close watch on it.  Hasn't grown since the initial sighting, so, that's good.

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