CSN Login
Members Online: 10

Recently Diagnosed?

Mimir
Posts: 24
Joined: Dec 2012

I stumbled across this board by chance while searching the web for information about kidney masses. About two week ago I was feeling perfectly fine, but I started peeing blood. After being poked and prodded by doctors, I was scheduled to have a CT scan. The next day, two weeks after I started peeing blood, the doctor sat me down and told me I had a large tumor in my left kidney. I ended up asking almost no questions because I was so stunned. I just nodded when he told me "You needed to have this taken care of." I'm seeing two other doctors when I go home for winter break after I finish finals (I am a college freshman). I feel like my parents, who I have talked to a lot, and the doctors are not really being honest with me. I understand they don't want to worry me, but I feel like I have the right to know what is going on.

While I understand that you guys are not doctors and haven't seen my test, what are the chances my 7.1 by 7.0 cm tumor is cancer?

Regardless of what happens, I will need to get surgery to remove the tumor. Do people have any advice on how to recover from surgery?

I'm finding it really difficult to talk to my friends about what is going on because on the outside everything seems exactly the same. Everyone is saying I'm going to be perfectly fine because the the CT showed the so far the tumor has not spread at all. None of my friends I have talked to really understand how serious this potentially could be and I don't want to tell them morbid stories.

Thank you in advance for responding.

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

Unfortunately, it sounds likely that you have kidney cancer, despite your tender years. It is serious but not the end of your world. It's understandable that your Family wouldn't want you worried sick at exam time but you do have every right to know the score and to participate in deciding on your best course of action. The size of the tumour is such that fairly swift action is desirable to optimise the odds that surgery will be all that's needed to cure you. A long delay (e.g. months) would be a bad idea since it could change the current good situation that the tumour is confined to your kidney.

In the meantime, reading the very long thread on "Recovering from radical nephrectomy" would give you a fast start on understanding what it's all about. Once you have had the surgery you will probably want to ask lots of specific questions which everyone here will be happy to try to answer helpfully.

Sorry you've had this experience - tough at any age but a real shock at yours. However, with youth on your side your prospects are good. We're all sorry you have to join us but will do all we can to welcome you and assure you you're now among friends who know pretty well what you're going through.

icemantoo's picture
icemantoo
Posts: 1658
Joined: Jan 2010

Mimir,

Not fun being told you have Kidney Cancer and than major surgery right out of the gate. It sure was not fun for me when I was told this 10 and 1/2 years ago. The surgery sucks. Unless you are the exception rather than the rule it is Kidney Cancer. So What. Most of us who have had the surgery can tell people they had cancer, not that they have it. Usually with tumors 4 cm or less there is close to a 100% chance of a full recovery from the surgery alone. At 7cm there may be a small chance of recurrance down the road. Many on this post are doing fine with tumors starting out larger than yours.

With that being said get it out ASAP. If seeing a doctor at home over winter break means 2 months from now get this taken care of sooner than that even if it messes with your finals. The one thing worse than a 7 cm tumor is that it grows and spreads and that is serious stuff. As Tex says take swift action now.

Once you get the surgery scheduled we can help you with it. Kidney Cancer is only 3% of all Cancers and the level of puplic understanding about it is very low so it may be hard to talk with others about it.

If this than 59 year old who is scared about having his blood drawn can get thru the surgery anybody can. Things do get better.

Icemantoo

Mimir
Posts: 24
Joined: Dec 2012

I already have appointments with two doctors for next week. I was hoping to get the surgery the first week of January so that I could minimize the amount of school I will miss. Do you think this is moving too quickly?

Also, thank you Tex and Icemantoo for your responses, they really helped a lot.

icemantoo's picture
icemantoo
Posts: 1658
Joined: Jan 2010

Mimir,

Good to see you are taking care of it now. You are going to have some downtime after the surgery. While you may feel like going back to school 3 or 4 weeks after the surgery, you will not feel like putting in an 8 hour day of school and homework for a month or 2. Take it easy after the surgery, See if you can get the administration and teachers to cut you some slack for the month or 2 after surgery.

Icemantoo

therapture
Posts: 25
Joined: Dec 2012

Hi mimir...

Like you, I was diagnosed out of the blue after a sudden onset of urine in the blood and soon followed by pain as the kidney filled up and was blocked with blood and blood clots. This was just on 11-27-12, through a big mess of two ER visits for pain and bleeding, becoming dehydrated from blood loss, etc., I was able to have hand assisted laporoscopic surgery on 12-4, yep, just 11 days ago! This surgery DOES suck, especially given that you most likely have cancer, as others noted, it's not likely it's benign. In my case I had a 7.3cm tumor that was pathologied to be a Stage 2 Grade 3 clear cell carcinoma, one of the most common kidney cancers, but also one of the best prognosis' for recovery and low chance of recurrence.

So what, this cancer, is one of the most easily cured when caught in time via nephrectomy. Your tumor, like mine, is 7+ cm, and needs to be moved on as fast as you can get a doc to get it out. TRY your best to get a doc that can do the surgery laporoscopically! It will speed your recovery time by a large amount. I was able to be walking within 12 hours of the surgery (slowly haha) on Wednesday, and by Friday I was on my way home and I have used zero painkillers since I left the hospital. That means I was at home just 48 hours after the surgery! It seems you are young, and that will help alot. If you are in good physical shape, that will help even more. I am 42 but I am/was/will be an active runner. I still am recovering but I can get out of bed myself, etc., walk for extended periods of time, and I actually did go back to work 6 days after the surgery, although I was mostly at a computer, and I only worked for 4-5 hours at a time with some small breaks, then I went home and napped a bit.

Don't be too physical, let the healing come, but don't be lazy about recovery either. Listen to your body and it's pains, you are going to be very good at it soon. Use your pain meds as needed in the beginning right after surgery, but wean yourself as fast as your condition permits. I was ultra constipated as apparently, I am a poster child for medicinal side effects. Getting off the meds faster will help cure this condition which can be painful in itself. I even gave myself my own suppositories! Colace, an over the counter medication, can be very helpful once you are home, as it brings water to your intestines to help soften things up and moving, it will be VERY hard to "push" 5-10 days after your surgery. If you have allergies, take an over the counter Zirtec every morning to try and stop and sneezing, it will F you up if you sneeze during that first week of surgery. Also sitting upright will help ease any coughing, and you WILL have to soon after surgery to clear your airway and lungs of fluid buildup. USE that little breath sucking device they give you in the hospital several times a day, it WILL help expand your lungs and bring up the small amounts of fluid up easier. Use a pillow pressed against your stomach area to help control expansion when you cough. It will be tough but as you can see, we all made it through!

Icemantoo noted the long thread "recovering from radical nephrectomy" and he's right, read the whole thing, my experience is in there towards the bottom. It's chock full of info both from a medical standpoint and a "living with cancer" standpoint. Your age, and the age of your friends, plays a part in your mental experience. People that have never had direct experience with cancer have a hard time understanding the impact and enormity of what it really means. Age tempers that somewhat with the simple fact we older folks have lived longer, seen more, done more, etc., but hey, it's OK to cry, let out that negative emotion and then get on with having an aggressive position about beating this cancer. You CAN beat it, it is NOT the end of the world, and your vernacular is going to expand quite a bit with a ton of information and knowledge coming your way.

In my case, I told my family and good friends immediately, and told my 8 and 13 year old children within 3 days of my diagnosis. I used facebook and mass texting as a sounding board and method to tell all my friends information without tons of phone calls.

Trust me, you are going to be fine, but get that mass out as soon as you can. Don't accept long waits of you don't have to, the bleeding indicates a faster than normal surgery as it can become problematic especially if it starts the copious amount of pain that a blocked kidney can deliver. I had femur surgery 8 years ago from a motocross crash, and this pain put a butt whipping on that experience.

You have now entered a totally new life experience, with some new emotions you have probably never felt before coming your way. Use this board as a tool to whine/cry/whatever. Don't hold anything back, and go on living. If you want to talk to one of us that has had kidney cancer, some here are even willing to talk on phone or private discuss via email, me included, just email or private message us for contact info. My email is (take out the spaces and *'s) the*raptur @ gmail**.com

Be sure and update us as things develop, I will be looking forward to hearing your updates. As a newly diagnosed and post surgery subject, I am most interested in your case.

MedScanMan's picture
MedScanMan
Posts: 108
Joined: Jul 2012

I think if you superimposed all the responses to your post on top of each other, you'd see three words shining through.... "Get It Out". Winter break, Finals, School in general can all wait. If this mass lit up on your CT scan you need a surgical consult ASAP. Find yourself a good Urology/Oncologist and get it done. Is there any way you can type here, the very bottom of your CT report? It's labeled Impression. Usually about four or five sentences. If you can do that we could sure help you know what's happening. You're going to be fine. If all that is showing is a 7cm mass on your left kidney and the rest of the report is negative your only job is to have it taken care of and recuperate. Surely you can see finals can wait.

Jeff

Mimir
Posts: 24
Joined: Dec 2012

Thanks for the input.

The "Conclusion" of my CT is: Large minimally vascular tumor mass in the left kidney with patency of the renal veins and no evidence of any significant lymphadenopathy. There are pericapsular prominent veins. Bilateral duplication of the collecting systems.

Looking at the CT, the tumor appears as a big solid black splotch.

I am in good physical condition so I hope my recovery will be swift.

I understand that finals take a backseat to cancer, but I ended up getting appointments after finals were finished. I think I just wanted to whine about dealing with finals and learning I have cancer at the same time.

MedScanMan's picture
MedScanMan
Posts: 108
Joined: Jul 2012

There is a bit more going on here other than your renal mass. A double collecting system either single or bilateral is an abnormality you were born with. Some people have this duplication from the renal pelvis (center of the kidney) all the way down to the bladder. Some have the ureters split apart further down. It would mean you have two ureters on each side instead of one. The ureter is what carries the urine from the kidneys to the bladder. I've seen many of these in my 30 years of scanning and some say it's just a congenital anomaly. Having it on both sides is a little unusual. I did a little research just now and found a few places online that state that Transitional Cell Carcinoma is sometimes reported in patients with duplicate collecting systems. Please remember I am not a physician and I am not giving you any medical advise here.....but some friendly advice would be not to wait on this. Please keep us informed. The fact that you have no significant adenopathy is a great thing. By getting this out quickly, you'll hopefully keep it that way.

DMike's picture
DMike
Posts: 241
Joined: Nov 2011

Mimir,

You've received great advice from everyone. Here's a link to a free downloadable PDF book by the Kidney Caner Association that will provide more information. It's called "We Have Kidney Cancer." It really helped me understand kidney cancer as I began my journey a year ago.

I'll be thinking about you and wish you the best. Feel free to ask questions here.

http://www.kidneycancer.org/index.php/component/content/article/216

--David

Mimir
Posts: 24
Joined: Dec 2012

I saw my first round of Doctors today. While they basically confirmed what most of you said about it being cancer, some interesting things came up. Due to my age (18) and that I have none of the risk factors, they think there is a possibility that it is a Wilms tumor. The doctor I saw said that Wilms tumors are responsive to chemo. They suggested I get a biopsy of the tumor because if it is a Wilms they want to try and shrink and or eliminate it with only chemo. The doctor wants to save as much as my kidney as possible. If it is RCC they would almost 100% have to remove the entire kidney because the tumor has basically cut my kidney in half.

Tomorrow I am going to NIH to meet with other doctors and see what they have to say.

dhs1963's picture
dhs1963
Posts: 394
Joined: May 2012

I just had a workup yesterday and today for familial kidney cancer. My news was not great (they found a probably met.), but the staff there took the time to understand and seemed interested in me. I wish you luck. I take it you are in the DC area? If so, I would like to know who you DR's are. I am over in Northern Virginia. My surgeon is Dr. Todd Tescher, but he knew nothing about familial cancer.

Familial means that it is inherited. My Dad's dad died for RCC, my dad has it, and I have it. There thinking is, if they can figure out what happens with us, why we get it, they may be able to figure out all cases. Definitely good use of our tax dollars.

Mimir
Posts: 24
Joined: Dec 2012

I haven't been to NIH yet (I am going tomorrow) and I only got the appointment because my pediatrician knew someone who knew someone who passed my report on. NIH was interested, I guess because of my age, so they emailed me asking me to come in. I'm not sure 100% what doctor I am seeing but they have a specific team for Urology Oncology http://ccr.cancer.gov/labs/lab.asp?labid=92 . I guess I would try to email the head of the program and explain your situation and see if he is interested.

The doctor I already saw was with GW Medical Faculty associates. I saw Doctor Harold Frazier who does a ton of laparoscopic surgeries and seemed very knowledgeable about new research on RCC. I am told his colleague Doctor Thomas Jarrett is also just as well versed . Both of those guys said they know the team at NIH and have some contact with them.

Good Luck, I hope you and your dad get better.

Mimir
Posts: 24
Joined: Dec 2012

I grossly misread your post-sorry! After finishing up at NIH I agree they are awesome. I met with Dr. Metwalli and Dr. Linehan. They where both really nice and are both incredibly knowledgeable. Dr. Linehan is the pioneer in kidney cancer. The only slightly annoying thing is all the tests I have to get done that might not be done other places. But I would rather them be thorough.

dhs1963's picture
dhs1963
Posts: 394
Joined: May 2012

For me the issue is what is the lung spot. Dr. Lineham is very interested in my family. My father and I went in together. We were there on the 19th and 20th. Perhaps you saw me. I was a middle age guy with brown hair and scraggly looking beard. I was probably wearing a washington nationals jacket.

The tests may seem annoying, but they help NIH understand the disease and improve your outcome.

I do not know your surgical schedule, but am confident that you will need to take it easy the first part of the spring semester. See if you can get a temporary handicap parking permit, so you can park closer. I know for me, I missed 8 weeks of work. And my job requires no real activity (I am a research scientist, but do all my work on the computer). If you are like me, you will not be able to lift your book-bag/backpack for 6 weeks after surgery. Plan on being limited.

I wish you the best. It might be advisable to take the spring semester off....you will be limited the first few weeks of the semester, and you may not have the energy to recover from that. This is serious stuff.

If you want a "local" to talk to, feel free to email me.

Good luck!

David

todd121
Posts: 641
Joined: Dec 2012

I'm also recently diagnosed. A week before Thanksgiving I had the bleeding and pain and at the ER they found a 6.7cm mass in my right kidney. On 12/10 (last Monday) I had my right kidney removed. I pushed the doctor to get the thing out fast. I'm home recovering now.

There were a couple of other small anomalies on my CT scan, but it appears to be confined to the kidney. I'm thankful for that. I don't have my pathology report back yet, so I still don't have a definite staging/diagnosis.

My surgery was done laproscopically, but like you, my tumor is in the middle of my kidney so they had to take the entire kidney out intact. That meant a large incision to remove it.

My recovery has been pretty much ok. The surgery was last Monday afternoon. On Wednesday afternoon I got to go home. I've been recovering pretty well.

This is hard to talk about. I'm having trouble discussing it with colleagues at work. I didn't know much about this a month ago, and now I know way more than I had ever wanted to learn.

I wish you the best. I hope they move quickly. I'm sure they will.

icemantoo's picture
icemantoo
Posts: 1658
Joined: Jan 2010

Todd,

Welcome to our club which nobody asked to join. Nobody enjoys the surgery. But you are hopefully on the road to a full recovery. There is a lot of knowledge on these boards. From reading the varius posts you should be able to get a handle on where you have been and where you are going. Nobody elses experience is axactly like yours. The next 10 days are going to be a lot easier than the last 10 days, While you may feel like doing things and getting back to work rest a little. In a month or 2 you should be able to do everything you did before, but no extreme stuff.

Other people have a hard time understanfding Kidney Cancer. They think in terms of chemo and your hair falling out. Not so for Kidney Cancer where you start out with this not so fun surgery.

May the surgery turn out to be your cure.

Icemantoo

Mimir
Posts: 24
Joined: Dec 2012

It has been almost 3 weeks since I had a radical nephrectomy. Recovery is going pretty well. I am back at school and while I get tired much more easily, I am able to manage. I'm still waiting on the results of my pathology. So far the doctors say the tumor is "descriptive" or has features of  many diffrent subtypes of kidney cancer. I'm still sort of worried about the patholoy report, so I try not to think about it. I'm having genetic testing done to test for a couple of hereditary conditions. Hopefully I will get some good news. In March I go back for scans and genetic test reuslts.

Thanks to everyone on this board who helped me.

icemantoo's picture
icemantoo
Posts: 1658
Joined: Jan 2010

mimir,

 

The one thing you have going for you is your age. Your recovery should be much easier than us old guys who had our surgery in our 50's and 60's. I had just turned 59.

 

When my daughter was 23 she had major surgery unrelated to RCC , 2 weeks before her second year of law schoo; started. Those first few weeks were tough for her and I think she got a faculty parking pass. Do make your school administration aware that you just had major surgery and that you are going to be on the mend for the first month or so. Not that you won't be able to give everthing they throw at you, just that you may not be able to do it 12 hours a day.

 

The other difficulty is that it is going to be hard for your peers to understand a cancer diagnosis at your age. Hopefully yu will be able to tell people that you had cancer, not that you have it.

 

Things will get a little better each day. Trust me.

 

Icemantoo

 

Ic

Copado
Posts: 4
Joined: Jan 2013

Chances are 90% it is a Kidney Cancer 10% are benign. You may want to talk to your uro-oncologist about the type of  the cancer Cells and the nuclear grade of the cancer.Good luck with this, the waiting is always so grueling! 

Mimir
Posts: 24
Joined: Dec 2012

8 weeks after surgery, I finally got my pathology report. I was told that I have  mainly chromophobe RCC which is apperently really rare for someone as young as I am. The pathologist at NIH had only ever seen 2 other cases similar to mine. The bad news is that it  is high grade and they discovered that tumor had grown into a vein (though not a large vein). Even though the chromophobe seems more aggressive than normal, there is no evidence of sarcomatoid features.  I will have scans every three months for the next couple of years to be watched closley. 

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

We seem to be getting more and more unusual cases coming up, but maybe that's just because we are learning more and seeing more?  Chromophobe is the slowest growing subtype which is why it is typically detected only in much older patients (like myself) by which time it is generally much larger than the average RCC tumor and has presented no warning signs when younger.  You're exceptional in having a tumor as large as 7 cm at such a very young age.

It's excellent news that it displays no sarcomatoid features - growing so fast, it would probably have started turning sarcomatoid before long and sarcomatoid chromophobe is extremely bad news (I'm the only one I know of who has it and is still alive). 

You said your histology is "mainly chromophobe" so presumably the aggressiveness is due to the other component(s) - have you been told what you have in addition to chromophobe?  The normal grading system (Fuhrman) doesn't apply to chromophobe so your grading may be meaningless, unless it relates particularly to the other component. 

It's good that you will be closely monitored for the next couple of years.  You will get a more understanding reception here than you're likely to get from friends and family, so 'stick with us kid'!

NanoSecond's picture
NanoSecond
Posts: 608
Joined: Oct 2012

I too have chromophobe type cells.  Between you, me, and Tex, if this keeps up we are going to have to change its status from "very rare" to "medium rare".  :)

My tumor, when it was finally detected, was 11cm.  Since as Tex pointed out this type is usually a very slow growing (perhaps only 1cm/year) it is possible that I had it growing in me for over 10 years.

It turns out there are many things that you can do to minimize the chances of developing future metastases.  They revolve around understanding the role of proper nutrition and diet in dealing with this disease.  If you are interested you might find the book, "Life Over Cancer" by Dr. Keith I. Block very helpful.

Best wishes,

 

-NanoSecond (Neil)

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

Neil, there is a wide range of rate, between patients (and some of the disposing factors can, perhaps be guessed at!) and it is simplistic to assume that the growth is linear. 

However, except with cases like Mimir's (and, generally, younger patients with the rarer sub-types) growth of primaries is nowhere near as fast as 1cm/year.  The best data to date (unless I've missed some authoritative recent study) shows that the typical rate is around one third of a cm/yr except with chromophobe - the slowest growing, with a typical rate reckoned to be more like a quarter of a cm/yr.   So, for you and me we've probably been developing this malaise for somewhat more like half our lives.  Mimir's case is different. 

Also, it may be the case that the growth can be a long way from linear and that it's slow for a long while and then accelerates markedly.  That was almost certainly the case with mine and is doubtless related to the sarcomatous de-differentiation which (aside from issues of the inherent inaccuracy of imaging, even with the latest generation of hybrid CT scanners) seems to have led to my primary going from around 7 or 8 cm to 9 cm in a few short weeks which would represent something of the order of a doubling of volume in less than 2 months.  (The ab wall met I'm now dealing with went from invisible to 5 cm in a couple of months or so, after my path had become sarcomatoid.)

There is another angle on this which may make all the above look to be nonsense.  I suggested to my Urologist that tumours ought to be measured in volume terms, not longest axis, or area, not knowing that he had proposed just that at UK level quite a while ago.  However, we all know the inertia within the medical establishment, no matter how persuasive a case can be made.   That change might throw a new light on the topic.  I imagine there is entirely adequate retrospective data to clarify the issue!

NanoSecond's picture
NanoSecond
Posts: 608
Joined: Oct 2012

Many thanks Tex,

I have just learned a whole bunch of things I was not aware of.

I certainly agree that there is little related to mRCC progression that actually works linearly.

And your (and your Urologists) concept of measuring tumor volume makes infinitely more sense to me than current practice.

All excellent points.

Mimir
Posts: 24
Joined: Dec 2012

I have been trying to read up on pediatric RCC since, knowning the growth rate of RCC, I imagine I have had the tumor from when I was 12-13 or probably even younger. Most of the literature I find (and there isn't much)  has one, if any, children who have chromophobe pathology. It seems that in the rare subset of pediatric RCC, chromophobe  RCC is even rarerest. At least NIH is having a field day with me.  Since chromophobe grows so slowly, I wonder how it can reach such a large (7.1cm+) size in pediatric cases. Is it possible that pediatric chromophobe RCC is  different  than the adult chromophobe?

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

I thought hard about whether it was wise to send you this link but you are plainly a quester after knowledge.  Also, you have been astute enough to work out something this recent paper from Singapore apparently establishes.  Perhaps you've even found the study?

"Conclusion: Younger patients were more likely to have non-clear cell RCC with higher disease recurrence and lower OS. They should not be assumed to have similar features and outcomes as screen-detected early RCC in older patients"

The paper is somewhat ominously entitled"Renal Cell Carcinoma in Young Patients is Associated with Poorer Prognosis"

http://www.annals.edu.sg/pdf/40VolNo9Sep2011/V40N9p401.pdf

Don't be too phased by the title. There's not a wealth of data and most of the knowlege we currently have is based on old data.  Hence the power of the slogan coined by one of our notable members here (Donna Lee) that "we are the crew who are changing those numbers".  I'm sure you're intending to be in the forefront of us in changing those numbers!  

The more you can learn, the better equipped you'll be and you've already shown you're up for it - good for you!!

 

 

 

todd121
Posts: 641
Joined: Dec 2012

Hi Mimir,

Thanks for updating us. Why did it take 8 weeks for you to get your pathology report? I'm not very familiar with chromophobe type, but do they stage it in the same manner as clear cell? So what stage did they say for you? And have you had other imaging done besides your abdomen? What dos it mean to be a "high grade"? Are you talking about Fuhrman grade?

How are you feeling?

I wish you well. Sorry that you're having this difficulty while trying to do school. I hope you're able to pay attention to your health. I know school can be stressful all by itself. That much I can remember from 30 years ago!

All the best,

Todd

Mimir
Posts: 24
Joined: Dec 2012

It apparently took 8 weeks because the pathologist was having a hard time figuring it out.  Apparently some parts of it seemed benign at first, so the pathologist compared slides from my biopsys to other parts of the tumor and eventually came up with chromophobe. I think another reason it took so long is goverment bureaucracy/reasearch protocol at NIH. The doctor didn't give me a stage (hopefully there will be more specifics on the written report) but given the size and involvemnt with a vein I think it should be between a T2-T3. The high grade  refers to the Fuhrman grade. I had a full body workup done at NIH pre-surgery. The only questionable finding was a 3-4mm nodule on my lung. The doctors didn't seem to concenered and I will have follow up scans to check for growth.

 

I'm actually feeling pretty good.  This past week I was able to go to the gym and start working out again which gave me a big mental and physical boost. While I have some days that are mentally tough, overall I think being in school is a positive. Most of the time I am busy enough that I don't have time to around sit and worry.

dhs1963's picture
dhs1963
Posts: 394
Joined: May 2012

The good news with the lung nodule is the thoracic surgeons at NIH are great.  I just had a 1.5 cm met removed from my left upper lobe by Dr. Schrump less than three weeks ago, and am basically back at 100%. 

Unfortunatly, my pathology for the primary tumor, and the met shows sarcotimoid features.

Good luck with your stuff.

todd121
Posts: 641
Joined: Dec 2012

Glad to hear your surgery went so well! That's good news.

Best wishes to you.

Todd

todd121
Posts: 641
Joined: Dec 2012

You're right about being busy. At first I didn't want to return to work. However, after I got back to work I was glad. Keeping busy and doing something useful is a good distraction.

They found 3 nodules, small like yours on my lungs as well. 1-2 were seen back in December, and the other 2 just recently (I didn't have a full ct of my lungs before recently). The ones they'd seen before didn't change in size. They seemed to think it might be nothing, that it could be anything.

My guess would be T3a,  if they stage it the same way they did mine. I had involvement of the small veins but not out into the major vein, and I think that was the difference between T3a and T3b. Without the vein involvement you would have been T2. They thought I was T1 pre-surgery (I was just under 7cm).

Good luck to you. Stay vigilant.

Mimir
Posts: 24
Joined: Dec 2012

I'm happy to say I can continue the NED train! My bloodpressure and kidney function where both deemed excellent. My genetic tests all came back negative.

 On the other hand, my doctors flat out said they have no idea why this happened to me. Intrestingly, I am the youngest person ( by a bunch of years) NIH has ever seen with Chromophobe RCC.The tumor ended up being 8cm, fully ecnapuslated, vasuclar invasion, Paner grade 2,  and T2a.

Members of this board always like to point out how we are changing the numbers in kidney cancer. I'm not changing the statistics; I am the statistic.

alice124's picture
alice124
Posts: 881
Joined: Mar 2012

Mimir,

Thrilled for you and for the continuation of the NED marathon.  Let's keep it going!

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

Actually great news, Mimir.  Have NIH made a guess as to how you could get such a large tumour so young?  It's all the more astonishing since it's chromophobe.

The NED marathon field is getting impressively large.  I ran in it for a few precious weeks - must try to get another entry!

Mimir
Posts: 24
Joined: Dec 2012

They say I am in uncharted territory. They have no idea how the tumor got so large.

icemantoo's picture
icemantoo
Posts: 1658
Joined: Jan 2010

Mimir,

 

Just think in seventy years you will be able to say you are the longest survivor of Kidney Cancer ever.

 

Icemantoo

Jackaroe's picture
Jackaroe
Posts: 14
Joined: Feb 2013

i know i'm a little late to this thread, but was researching chromophobe because that's my flavor (or was, i hope), and i had a PET scan today to investigate some lymph node concerns.

at any rate, i nominate iceman's post as the RCC positive post of the year!

Subscribe with RSS
About Cancer Society

The content on this site is for informational purposes only. It is not a substitute for professional medical advice. Do not use this information to diagnose or treat a health problem or disease without consulting with a qualified healthcare provider. Please consult your healthcare provider with any questions or concerns you may have regarding your condition. Use of this online service is subject to the disclaimer and the terms and conditions.

Copyright 2000-2014 © Cancer Survivors Network