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chromophobe rcc

Kidneycancer@35
Posts: 14
Joined: Aug 2013

Hi Everyone, 

 

I wanted to know if there are any people with similar circumstances to me. I had severe stomach pain in April thisnyear andnthe dr sent me for an ultrasound suspicious it was my gall bladder. The ultrasound tech told me my gall bladder was fine so I didn't go back to collect results and put it down to a strange virus.

I went back to the dr about 3 weeks later for the flu and was told the scan had picked up a suspected 3.8cm angiomyolipoma in the middle of my left kidney.

I had ct scans which revealed the tumour was solid. In the mean time I had been getting pains on my left side to the extent my left rib cage was noticeably higher than my right. All drs kept telling me was I was too young (I'm 35) and didn't fit any of the risk categories. I'm an ex smoker, healthy weight range etc. I was also told all along that I shouldn't be getting pains.

I was fatigued and feeling worse quite quickly.  I finally got in to a specialist who referred me for a biopsy which revealed the tumour was chromophobe renal cell carcinoma.

I had a radical nephrectomy of my left kidney two weeks ago. I have been recovering well but I am still swollen in the middle. Can anyone tell me how long it takrs to go away? I also almost faint pretty much every time I stand. I just crouch or lean against something until the dizziness subaides and then I am fine. Has anyone else experienced this? If so, how long does it last. Other than that I am off pain meds and getting out and about and I'm now able to look after my 3 yr old daughter while my partner is at work.

My follow up is in 10 days and I'm nervous and hoping that the cancer was contained to the tumour.  From what I've read there isn't any affective treatment for chromophobe rcc if it spreads other than surgery.

Looking forward to hearing from people.

 

 

 

 

 

 

 

 

Texas_wedge's picture
Texas_wedge
Posts: 2807
Joined: Nov 2011

Good morning and welcome.  Yes, there are many of us and there's a lot we will be able to tell you that will be helpful.  First of all, there are many threads about it here already - if you go, say, to the top right corner of the screen and use the search facility, you should find a lot of them,  e.g. a thread entitled "RCC chromophobe"  with (at last count) 77 posts in it.

I'll give you some answers later, but first some info from you would be good.  I'm building a database about chRCC and would like to add your data to it if I may.  The information that others have kindly given me (a few dozen of us so far) includes:

Age (now) date of diagnosis, gender, ethnicity, location, the stage, grade and size of your tumor (all facts that should be in your pathology report - after two weeks since your op, you should be able to get a copy of that now) and the side;  also your blood group and brief detail of your treatment (I gather that that's only surgery so far and I hope it stays that way.  If you had a "sarcomatoid" component reported I would want to know that too.

I shall be most grateful if you could give me that information and I look forward to giving you information that will be of help in managing your own situation from now onwards.

Kidneycancer@35
Posts: 14
Joined: Aug 2013

Hi Texas Wedge,

I am glad to hear you are compiling your own data on chRcc. From what I've read there hasn't been much research on this cancer with most focissed on clear cell Rcc.

I will get access to my pathology report when I see the specialist on 21st of this month but I can give you the other details.

I am 35 years old, female, residing in Perth, Western Australia.  I am Caucasian with an Irish born mother and Scottish born father.

I received the diagnosis this was chromophobe renal cell carcinoma on June 20th. This was derived from a biopsy on June 10th. My left kidney was removed on 25th July. My blood group is 0 positive and at this stage surgery will be my only treatment.

 

 

 

 

 

 

I am alive
Posts: 211
Joined: Jul 2012

When I found this site a year ago I felt ALONE, there were so few chromophobes. Lately it's been raining chromies!  Right off the bat I want to reassure you that there ARE drug therapies that can be effective with chiromophobe. Just not as many as with clear cell RCC. And now with drugs being delivered in combinations, headway in immunotherapy and new drugs coming on the market, there will be more options in the future. Yes, surgey is the best and surest solution. I'm currently in a clinicAl trial specifically for non-clear cell RCC, of which chromophobe is a sub type, in which I get an infusion every two weeks of bevacizumab (also known as Avastin) and I take a daily 10 mg pill of everolimus (also known as Afinitor). Been in the trial for a year so far with met stability and some resolution. Didn't get my first met till four years post nephrectomy, and that was removed surgically. Three years later another met showed up, and another, and another, and that's when I started drug therapy. I hope you have an oncologist who specializes in kidney cancer. If you don't, find one because chromophobe is so rare, you want to have a doctor with deep experience with RCC, who already knows which drugs tend to work with chromophobe, and which don't. And whats coming down the pike. People here can help you find a specialist. follow Trevor's advice and read the past posts on chromophobe. Then let's talk. You're still in shock, but that will wear off. You've landed in a good place here. We're all in your corner.

Kidneycancer@35
Posts: 14
Joined: Aug 2013

Hi I am Alive,

 

Thank you so much for your reply and it is reassuring to see that you are still here after what you've been through and that the drugs you are taking are helping.

I have read some older posts on ch rcc and I have realised there are similarities between yourself and I.

I smoked full time from 21 - 25. I quit for 5 years and started again due to work stress (deadlines, heavy work load) but quit again for good at 31 when I found out I was pregnant.

The similarity that struck me is there is no cancer in my immediate family but on my mother's side 4 out of her 8 siblings have had various cancers.

I will read more of the previous posts and I'm very happy to have joined this forum. Both yourself and Texas definitely seem to know your stuff which is heartening after having doctors dismiss me and constantly tell me I don't fit the risk criteria so I can't possibly have it. But I did.

 

 

 

 

 

 

 

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

As Texas Wedge and I am alive say, you landed in a good spot.

This site if full of caring, engaged people, intelligent people who are here to support you and me, and anyone else diagnosed with rcc. You'll find that no matter the circumstances, good news, bad news, something intersting, up days and down days, there is a plethora of hugs, smiles, shoulders and solid advice from survivors to help bolster you up.

Take your time on your recovery! It will take up to a full year to get your body back into shape after the way its been handled during this surgery. 

Come often, stay as long as you'd like and belly up to the conversations.  Make yourself at home.

Michael

NanoSecond's picture
NanoSecond
Posts: 503
Joined: Oct 2012

Well, welcome to our special club.  It's by invitation only - but, no need to RSVP.  That's one of the perks - since you can't refuse admission.

All kidding aside, you will find a wealth of information here.  Although chromophobe is said to be "rare" I have joked with my favorite other chromie around here (Tex) that there are so many of us that I surely think we now qualify as "medium rare".

I did want to address a few points in your post.

First, there are quite a few effective "targeted" therapies available to us these days.  I have been taking a TKI (Tyrosine Kinase Inhibitor) called Sutent (Sunitinib) for almost one year now - ever since my bone mets were first discovered last July.  It has kept all my lesions either stable or shrinking and I have (so far) not suffered any significant side effects.  It's important to keep in mind that these TKI's and other targeted therapies do not (generally) offer complete remission but they do significantly delay the progression of the disease.  Their basic goal is to turn mRCC (metastatic RCC) into a chronic disease rather than a fatal one.  Also remember - its the metastases that are the danger.  The primary tumor is (generally) not life-threatening or life-shortening.

Second, you mentioned some dizziness.  Were you, perhaps, taking any blood pressure medications prior to having your tumor removed?  It sounds like you may be suffering from low blood pressure - usually manifested when you abruptly get up from either sitting or lying down.  You should definitely discuss this with your doctor.

Finally, there is, if you so desire, other life-style issues that you might want to address to help fight and/or prevent further spread of this disease.  The two most effective are to adopt what I call a "proper" diet and to increase your level of exercise.  If you are interested in learning more about the science and rationale behind "proper" nutrition I have prepared a 58-page .pdf document that explains it.  It's yours for free if you email me at: n.feldman@videopost.com so that I can respond directly with it attached.

Hang in there,

-NanoSecond (Neil)

TillieSOK's picture
TillieSOK
Posts: 232
Joined: Jul 2013

Neil, I'll be emailing you for that PDF file, too.  We have what? 23-24 in the club now?

NanoSecond's picture
NanoSecond
Posts: 503
Joined: Oct 2012

Hi Tillie.

I have sent you the file via direct email.

I am not sure what the actual count is - but I bet Tex can answer that.  And perhaps tell us what sort of trends he is seeing.  I know he is particularly interested in correlating everyone's blood type.

Texas_wedge's picture
Texas_wedge
Posts: 2807
Joined: Nov 2011

Correct, of course, Neil! 

27 in my db at present plus an honorary in young Cody Nuse - son of myboys2 - who has an even rarer, but fairly similar, type - mucinous and tubular spindle cell RCC.

In addition to blood type, I'm examining several other factors which show promise so it's a matter of 'the more the merrier' for me, in terms of improving the statistical significance of patterns that may be emerging.   So, all other chromies are welcomed into my database!

Kidneycancer@35
Posts: 14
Joined: Aug 2013

Hi Texas

 

I realised I could give you my biopsy report ahead of the full kidney pathology. Microscopy reads: sections show fragments of chromophobe renal cell carcinoma characterised by diffuse arrangements of cells with hyperchromatic irregular nuclei and variable dense eosinophilic cytoplasm,  with many showing prominent perinuclear halos or clear cell change. The tumour is negative for vimentin and diffusely positive for CK7.

 

Does the fact many cells have shown clear cell change point to a sarcamatoid (sp?) element and therefore higher aggression?

 

The biopsy conclusion is chromophobe renal cell carcinoma.

 

Thanks in advance for your input.

 

Lorna

 

 

 

 

 

 

 

 

Texas_wedge's picture
Texas_wedge
Posts: 2807
Joined: Nov 2011

Thanks for that inspiration (the biopsy detail), Lorna.  I'm an (increasingly) informed patient but no more than that - no medical training of any kind, so don't expect too much from me. 

There are sub-types of chRCC exhibiting differing cell types and there are often mixtures of types , e.g. as between chRCC and the common ccRCC.  Add to that the bizarre, almost private, language of radiologists, curtailed further by exigencies of reporting time allowances (e.g. ten minutes per patient) and you have a recipe for indecipherable summaries.  So, I'm old enough and ugly enough not to stick my neck out very far on what you've told me - your path report will be along soon, so it's much better to wait for that than for me to speculate and risk getting it all wrong.

However, I will say that I would be extremely surprised (for many reasons) if you had any sarcomatoid component.  Had there been any such suspicion, I think it would have been made clear already.   There is what is called "the chromophobe connection" - the finding that chRCC is more prone than the other types to turn sarcomatoid, but it's a fairly small effect.  chRCC is rare enough that the absolute numbers of (known) sarcomatoid chromophobe cases at any time is very small - almost certainly fewer even than the number I have in my chRCC database already!  It's amazing that we actually have two cases here - our friend john and myself are both sarcomatoid chromophobes.  Fortunately John's cancer isn't metastatic, despite his having had a huge tumor and I'm delighted it is staying that way.  (It leaves me as the only metastatic sarcomatoid chromophobe case alive anywhere at the present time, that I'm aware of.) 

Consequently I believe you can relax over the sarcomatoid question and rejoice in having had the slowest -growing form of RCC, carrying the most favourable prognosis.

Kidneycancer@35
Posts: 14
Joined: Aug 2013

Hi Texas

 

I really appreciate your input. I hope you manage to keep fighting this disease. It is great you are arming yourself with as much knowledge as possible about thia particular cancer and are happy to pass it on.

 

Take care

 

 

I am alive
Posts: 211
Joined: Jul 2012

Wow. That could be an all time high. 

Fizziwiz's picture
Fizziwiz
Posts: 42
Joined: May 2013

I just emailed a request for your PDF, also.

 

I am so grateful that this site is here..

I am alive
Posts: 211
Joined: Jul 2012

KC@35,

   There's a huge amount of cancer on both sides of my family. Ovarian, esophageal, stomach, cancers that will always be cloaked in secrecy because back in the day they barely said the word "cancer" out loud, let alone talk about it explicitly. But still, I thought I would be immune because I lived well, ate well, didn't drinK to excess, smoked only briefly in my youth (and then mostly bummed cigarettes when on deadline)  etc. etc. HA! No one, to my knowledge, had kidney cancer. But I do remember as a kid riding my bike in back of trucks spraying clouds of mosquito repellant. Can you believe that? I grew up in Florida in the 50s and 60s (I'm 61 years old now) and these trucks would drive through the neighborhood in the summer spewing chemical clouds and we thought it great fun to chase them. What were my parents thinking to allow it? Ahhhh, how sensibilities have changed over the years. I also spent hours tanning in the sun - and have the basal cell and squamous cell carcinomas removed over the years to prove it.

Now I worry about my daughter who will turn 21 this fall. Her aunt on my husband's side had (&survived) breast cancer - another Big C to add to the list of hereditary possibilities. But I think there's a good chance that by the time my daughter and yours reach midlife "cancer" as such will be beaten into submission. We will understand its mechanisms and triggers more clearly, have much better ways to treat it and many,if not most cancers truly will be treated as chronic conditions like diabetes.. Thats the hope anyway, not at all unfounded. Our job is to hang in there to benefit from these miracles to come! And remember, you are awaiting your tumor report. If your cancer was encapsulated and fully contained within the kidney there is a good chance you may never have a recurrence, though I would always be vigilant about check up scans over the years because, as you can see from people's histories, you can never be sure it won't spring a surprise visit. The good news is that chromophobe is generally slow growing.

You had commented something about "after all you have been through" and other folks have said things like that, too, after reading my history. But here's the weird part - I don't feel like I've been through a particularly horrible time. Emotionally hard, yes. But once you get to that place where you roll with your cancer, do what you need to do about it and move on,  cancer becomes just another thing in your life. It's no longer the headline. Can you believe that? Well, maybe not today. But that's okay. There are lots and lots and lots of tomorrows to come. 

Kidneycancer@35
Posts: 14
Joined: Aug 2013

Thank you all for your replies and making me welcome and being so supportive. It is great to hear (read) your stories and know there are others out there who are informed and positive. Neil, I'm definitely keen to get a copy of the report  and I'll email you shortly.

 

Thanks again,

Lorna

 

 

T1ffanyz's picture
T1ffanyz
Posts: 41
Joined: Aug 2013

I have a similar story, stomach pain, side pain, hospital visit, tests... They told me it was due to my endometriosis. Then it was my IBS, in July they found a mass, didn't tell me! Issues had me in ER every month, in feb of this yr dr said the mass on your kidney is growing.  I said what mass!   So MRI showed mass clearly ball was set in motion I traveled to ny to 1st urologist who wanted to do radical nephrectomy.  I refused due to sisters history of kidney issues.   He referred me to dr Paul Russo a colleague at memorial Sloan Kettering cancer center.   met dr Russo a month later and my surgery was scheduled a Month later Lille July 11.  I flew back on the 9th. Had test, pre op and surgery on the 11th. Had a partial nephrectomy dr Russo saved 95% off my kidney and a week later I found out it was cancer. They keep telling me I'm too young that its a 50 year old and up disease.  That it could have gone undetected for years. I feel great. I move slower have some discomfort but I'm healing 

 

best of luck to you. I think I'm learning cancer is unpredictable it no longer discriminates against any age. 

Fizziwiz's picture
Fizziwiz
Posts: 42
Joined: May 2013

Pain, Pain, Pain!!!

thats what got me in, too!  I thought it was gallbladder, and bad mouthed Denny's for days.

And nobody believed that it was the kidney, or the cancer causing the pain.

but it was.  The minute I was coherent after the surgery, I could report that there was indeed pain, but not the pain that was present before the radical nephrectomy.

my surgery was May 13, 2013, and I am back to work, 32 hours a week. I get tired. Really tired, but I am doing well.  i am stronger every day! The fainting is troublesome to me, and may be blood pressure related. Please have that checked!

welcome to the club!! 

Liz

Kidneycancer@35
Posts: 14
Joined: Aug 2013

Hi Liz and Tiffany,

it definitely sounds like you've had similar experiences to me and thanks for sharing. I am still getting dizzy spells but today hasn't been too bad. I had my blood pressure checked last week and it was fine. I think maybe the dizzy spells are a result of the kidney having to do the work of two. Liz, I am going back to work in 3 weeks and I'm worried about how I'll go. It's a 40 hr working week plus an hr commute each way (sometimes 1.5 hrs each way) plus I have a 3 yr old. I was extremely fatigued before the op (that and the pain were my main symptoms). I do feel that fog I had prior to the op has gone but I definitely don't have the stamina to get through a week just yet. I'm hoping to negotiate a reduction in my hours but I'm not sure if my boss will go for that.

I hope you are both continuing to do well and wishing you both happy and long lives with no re occurrence!

 

 

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