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Recently Diagnosed Renal Mass...

ddantzler's picture
ddantzler
Posts: 21
Joined: Apr 2013

I'm a 30 year old male in Columbia, South Carolina.

In September of 2012 I experienced painless gross hematuria, which was quite a shock. I visited a general practitioner who advised that given my youth and otherwise healthy condition, I likely had a severe urinary tract infection. I began a course of antibiotics, and the hematuria evolved to blood clots and eventually reduced to microscopic by the time I completed the course.

The general practitioner informed me that though my symptom had improved, the urine culture had shown no bacterial growth, suggesting that there was no urinary tract infection. He recommended that I see a urologist.

The urologist appointment was scheduled two weeks later, and when he performed a urinalysis, there was no hematuria. He scheduled a general x-ray which also revealed no abnormalities. He suggested that we could take one of two courses of action:

  1. Order more tests such as a CT scan to see if we could determine the cause of the hematuria.
  2. Take a wait and see approach, to see if the hematuria returns.

I opted for the wait and see approach, and he recommended that if I had a recurrence of hematuria, I should see him immediately.

Everything was going fine until March 19, 2013 when I experienced a few blood clots in my urine, which were minute and would likely not have been noticed if I hadn't been taking a proactive approach in watching my urine since the initial episode.

I called the urologist to schedule an appointment, and he set up a CT scan for March 29, 2013 and an office visit to review the results immediately afterwards.

Per the radiologists report, the CT scan revealed:

  1. 39 mm solid mass lesion in the left kidney suspicious for neoplastic disease including renal cell carcinoma. No retroperitoneal adenopathy.
    "The left kidney demonstrates a large heterogeneously enhancing solid mass lesion in the superior one-half producing mass effect on adjacent calices. This measures 37 mm AP x 39 mm transverse x 33 mm in vertical height and suspicious for a neoplasm. There is no left urolithiasis or hydronephrosis. Other than the mass, no unusual filling defects within the left renal collecting system. No retroperitoneal adenopathy. Normal enhancement of the bilateral renal veins."
  2. Sub-cm low density nodule in the right hepatic lobe, most likely a cyst.
    "Liver and spleen are normal size and demonstrate normal enhancement other than a small sub-cm low density nodule in the right hepatic lobe inferior and medial demonstrating no confident enhancement suggesting a small cyst."

CT Scan

The urologist is a 64 year old traditionalist who has recommended an open radical nephrectomy. He suggested that I discuss the situation with my family and meet with him on April 3, 2013. He stated that there are no other tests to be performed at this time, it's just important to get the kidney removed as soon as possible.

I am considering seeking other medical opinions or options.

Please keep me in your thoughts and prayers.

I have been researching and reading non-stop since this discovery, and have read the kidneycancer.org free book, among many other forums and clinical studies. I'm particular interested in potential recurrence with partial nephrectomy, and the laparascopic vs. open debate.

Any information or help that you can provide, if you've been through this would be helpful. 

What questions should I ask my doctor tomorrow?

dhs1963's picture
dhs1963
Posts: 373
Joined: May 2012

Find a different urologist, and find a urological oncologist.  At less than 4 cm, you will most probably be cured with surgery.  However, I see no reason to not have laproscopic.  Also, Partial Nephrectomy is better, as it leaves you with mor ekidney function.

Find a urologist that is familiar/trained in the latest technology.  An open radial nephrectomy for a small tumor does not make sense to me.

At columbia, I would talk to people at either Duke Medical Center or Emory in Atlanta.  

foxhd's picture
foxhd
Posts: 1920
Joined: Oct 2011

er, recommends. Good advice.

ddantzler's picture
ddantzler
Posts: 21
Joined: Apr 2013

Thanks for the recumbendations... Wink

but, seriously thank you.

Per your advice, I have decided to go the University route. I will be asking my urologist to forward my records to MUSC in Charleston, where I have scheduled an appointment with Dr. Stephen Savage on April 15th.

EDIT: They called me back and bumped up my appointment to April 8th.

ddantzler's picture
ddantzler
Posts: 21
Joined: Apr 2013

Oops, forgot to mention that what scares me about the partial nephrectomy is the risk that they don't get the entire tumor, or somehow spread cancerous (assuming it's cancer) cells in the region. I guess I feel like if it's all contained in the kidney, why not just remove it and be done with it. Kidney function is nice, but people donate a kidney here and there and are fine.

My goal would be the least risky approach, get rid of it and hopefully be cancer free.

Maybe the doctor (who obviously knows better than me) will be able to convince me to take the partial approach.

AprilandChuck's picture
AprilandChuck
Posts: 95
Joined: Feb 2013

If you have the means to travel... Mckay Urology/Levine Cancer Institute has at least two pretty awesome Urological Oncologists...I list them both because Levines Urological Oncologist are actually McKays.. but Levine team treats so they are all housed in the same building... even though the main part of McKay Urology is housed in another place fairly close by... We like the team treat system because there are more eyes on the problem... If you can travel call McKay and ask about Doctor Kris Gaston.. Best of luck hugggss

dhs1963's picture
dhs1963
Posts: 373
Joined: May 2012

I do not know the Carolina's.  AprilandChuck do.  

icemantoo's picture
icemantoo
Posts: 1554
Joined: Jan 2010

Most of the Doctors on the cutting edge of Kidney Cancer are either affiliated with large University's or came out of large Universities in the last 10 or 15 years. Most are under 50. The old way of doing things with an open radical was the standard 20 or more years ago. When I had mine almost 11 years ago the new thing was laproscopic. My surgeon is my kids age. In the last few year they started doing partials,   You have a 4 cm tumor which should result in a full recovery after surgery. Find a large Urology practice or University where the Urologist specializes in Kidney Cancer.

That being said at 30 years old and a tumor under 4 cm you should be fine. The surgery is not fun, but better days lie ahead.

 

 

Icemantoo

 

PS: I do not think this was Doogie Howser's specialty (This may be before your time so Google Doogie Howser MD).

ddantzler's picture
ddantzler
Posts: 21
Joined: Apr 2013

Thanks for the feedback and the support! I read a little regarding Chuck's situation in your recent post and I will keep your family in my prayers!

cran1's picture
cran1
Posts: 128
Joined: Mar 2013

Hang in there D.....

ddantzler's picture
ddantzler
Posts: 21
Joined: Apr 2013

Thanks for the support!

This whole thing comes as a shock. Other than the blood in my urine, I feel great. Because of that, it alll feels surreal to me at the moment.

I have an appetite, no fever, etc. The only thing that might be a red flag for me medically would be that since the first experience with blood in my urine, I have been plagued with minor infections and illness (bad cold that required antibiotics, strep throat, infected cuticle that required lancing and antibiotics). This coming from a guy who hasn't been to a doctor in 3 or 4 years prior to the hematuria incident. Looking back, perhaps that was because of a weakness in the immune system. Maybe not. Also, at every other doctor's appointment I've had since, I seem to have borderline high blood pressure.

 

 

NanoSecond's picture
NanoSecond
Posts: 531
Joined: Oct 2012

Like you I only had one symptom (finally) show itself: blood in my urine.  However, in hindsight I also had borderline high blood pressure for several years prior.  I was taking a very dose of medication (Benicar - olmesartan) to deal with it.

But after my full left nephrectomy my blood pressure dropped down to normal. In fact I had to stop taking all BP medication or risk too low BP.

My tumor (11cm) likely had been growing in me for at least 7-10 years.  It was during the same time period as when I developed that higher blood pressure.

ddantzler's picture
ddantzler
Posts: 21
Joined: Apr 2013

The doctor said I'm lucky to have had the blood in my urine, and that most folks don't experience any symptoms until the tumor is much larger. In that regard I feel blessed.

I must say, that the general practitioner I saw originally due to the blood in the urine is eating his words now. He said:

"It could be a variety of things: UTI, kidney stones, ruptured blood vessel, kidney or bladder cancer. Since you're not feeling pain, it's not likely kidney stones. Kidney and bladder cancer typically effects men in their 60s. This would be extremely rare. You're not going to be the only guy under 30 with kidney cancer in South Carolina this year, and if you are, you weren't meant long for this world anyway. I would take a wait and see approach, because if it's something serious it will come back."

dhs1963's picture
dhs1963
Posts: 373
Joined: May 2012

First, has anyone else in your immediate family had kidney cancer (parents, grandparents, siblings).  If so, there are studies on familial kidney cancer that may be of help.  I mention this because you are young.

Second, your GP is wrong.  His wrong advice could have killed you.  Kind of like, when my father was diagnosed with kidney cancer, and knowing my grandfather died of it, I asked my internist if I should be screened.  He told me that it is an environmental disease and I should not be at risk.  I am now part of the NIH familial kidney cancer research project.

ddantzler's picture
ddantzler
Posts: 21
Joined: Apr 2013

To my knowledge, there is no history of familial kidney cancer in my case. 

augello55
Posts: 12
Joined: Mar 2013

my father had kidney cancer ....  my dr told me to make sure I tell my siblings to have an ultrasound or scan done of their kidneys   

roaddr23's picture
roaddr23
Posts: 77
Joined: Jan 2013

Is the NIH research project taking any new patients...My paternal Grandma had Kidney Cancer and so did a guy who is  in her direct line genealogically...Since I have had it twice now I am concerned for my children and grandchildren because of my line but also my husband's. His mother passed away Sept 2012...she was 90 and she had Kidney cancer but the Drs said that old age would kill her before the cancer. That is what happened by she did have it..her sister lived next door so my husband who is one of 12 kids grew up with his 10 cousins. In 2006 one of his younger male cousins got dx with Kidney Cancer and died the day after Christmas 2006. As I said his mother and cousin's mother are sisters...so my kids have it comeing from both  sides...just curious about the project..since I live in So. Maryland and NIH isn't that far away...

AprilandChuck's picture
AprilandChuck
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Joined: Feb 2013

Chuck was healthy.. he got bitten by something 2 years ago and ended up in the emergency room for infection(which they found strange we now think this could have been our first sign that something was wrong..He also punched a goat(long story) and ended up with gangreen in his finger from an infection.. but people even medical people don't assume cancer because you got an infection)... prior to that it had been 10 years since he had an illness that required medical attention.. when he had Blood in his Urine no abnomalities showed up in his blood work...he had.. had some weight loss.. but he works all the time and the summers had been a bugger so we attributed this to his work load in the heat...The doctors told him "you are healthy except for the cancer" which totally wigged him out.. how can you be healthy except for cancer..But they meant that everything else checked out.. and he was good for other treatment because of no underlieing issues...as far as we know he has no family history of Kidney Cancer...he did 3 tranmission jobs the week he peed blood and had some minor back pain he attributed to the lifting...Peeing blood was his first and only sympton of something wrong...the Doctors told him.. the strain on his back aggravted the Kidney and prob caused it to bleed or we may still not know he has Kidney Cancer...and he still feels good except being a little more tired... than he used to be... and some gastro issues we attribute to the HD IL2 treatment he underwent...So we know how you feel...it's rough to be sick and not feel sick... your tumor is still small though.. so your prognosis should be really good....and once you get the nephrectomy you should be on the mend!!! Praying for that outcome good news is always welcome :D

foxhd's picture
foxhd
Posts: 1920
Joined: Oct 2011

No story about punching a goat is too long..........

ddantzler's picture
ddantzler
Posts: 21
Joined: Apr 2013

^ This...

ddantzler's picture
ddantzler
Posts: 21
Joined: Apr 2013

Who wouldn't want to punch one?

foxhd's picture
foxhd
Posts: 1920
Joined: Oct 2011

YOU KNOCKED OUT ALL HIS TEETH!!!!!!!!!!!!

garym's picture
garym
Posts: 1651
Joined: Nov 2009

A professor at Auburn University is giving a seminar on the supernatural. Getting a feel for his students, he asks "How many of you believe in ghosts?" About 80% of his students raise their hands.

"That's a good start I suppose. Those of you who believe in ghosts, how many have actually seen a ghost?" About 30 students raise their hands.

"That's good. I'm really glad you're taking this seriously. Ok, has anyone here ever talked to a ghost?" About a dozen students raise their hands.

"That's a great response. Has anyone ever touched a ghost?" Two students raise their hands. "That's fantastic. But let me ask you one last question... have any of you ever made love to a ghost?"

One student in the back raises his hand. The professor is astonished. He removes his glasses, takes a step back, and says, "Son, in all the years I've been giving this lecture, no one has ever actually claimed to have slept with a ghost. Why don't you come up here and tell us about it."

The redneck student replies with a nod and a grin, and makes his way up to the podium. The professor says, "Well, tell us what it's like to have sex with a ghost."

The student replies, "Ghost? Oh... I thought you said 'goats'!"

 

AprilandChuck's picture
AprilandChuck
Posts: 95
Joined: Feb 2013

First I need to tell those who do not know that Chuck is a Auto Mechanic... We live in the Country..The neighbor had a goat who had a baby.. then was killed so the Baby Goat did not realize it was a goat it was raised with dogs... Somehow it got very attached to Chuck.. and would watch for him to come home and come over to visit...which was fine even cute when it was little and did not realize it was a goat...as it got older it developed Goat like charcteristics it did not have when it was smaller.. on one memorable occassion it followed our insurance adjuster up on the roof via the ladder when he was inspecting for hail damage...trying to explain to him NO we did not have a goat was fun I have to tell you....It continued the pattern of coming to visit for a bit and then it started playfully attacking people when they came to visit.. which for me was a no no.. Chuck however had a slightly different take.. and just asked the neighbor to keep the goat home when we had company...He has a freind that has a 45,000 dollar car Chuck is the only one allowed to look at it.. one day he brought the car over for Chuck to check out...Goats climb on things it's what they do... well Chuck was under the hood and heard the goat jump on the car... Being a guy his first reaction was to rear back and punch the goat... the goat being a goat put it's head down.. and his horn went in between Chuck's fingers...it stunned the goat.. but it was okay...once again being a guy Chuck taped his fingers together and went about his business...and about a month later wa la a hand that looks like something off of thing in the Fantastic 4's and a diagnoses of Gangreen...the lesson everyone took from this??? NEVER PUNCH A GOAT!!! The neighbor finally decided that the goat needed to live somewhere else....and hopefully Chuck learned a valuable lesson...But as I said he's a guy lol....

AprilandChuck's picture
AprilandChuck
Posts: 95
Joined: Feb 2013

Three things lol Chuck says Never had sex with a goat lol...and no he was not drinking(would have been a great excuse for punching the dang thing though lol)and to the women.. I am supposed to tell you he did Wash his fingers before he wrapped them and used peroxide lol...as he told me at the time.. when I was trying to get him to go to the hospital...

garym's picture
garym
Posts: 1651
Joined: Nov 2009

I didn't believe Clinton either...goats name wasn't Monica by chance?

cran1's picture
cran1
Posts: 128
Joined: Mar 2013

Dang goats!!!!!!

augello55
Posts: 12
Joined: Mar 2013

everyone is different and ask your doctor all the questions you need.  my dr recommended open partial for several reasons he wanted to actually look at my kidney...the slightest abnormalty and he would remove the whole kidney.  He also claimed that after removing the top part (upper pole) of my kidney the pathologist would do a frozen section and look for any abnormal cells in the surrounding tissue...which also could lead to removal of the whole kidney.   He felt that although recovery time would be longer, it is the most effective.   However that being said if your dr says its ok for you to go laparascopic and you are comfortable with that then go for it!   good luck!!!!

foxhd's picture
foxhd
Posts: 1920
Joined: Oct 2011

goats. pretty funny. but trumped by Gary. Keeping your sense of humor through all this is a very desirable trait. Such a big part of doing well.

ddantzler's picture
ddantzler
Posts: 21
Joined: Apr 2013

Unfortunately, there isn't much news. I did go to MUSC on Monday, but the disc provided by the radiologist who conducted the CT scan failed to operate. Consequently, the meeting was more of a meet and greet (disheartening after a 2 hour drive).

The doctor did state that their approach is more in line with the American Urological Association approach. IE: Their preference is nephron sparing surgery (laparascopic or open depending on location) if at all possible. If nephron sparing surgery isn't an option, then most likely they would use a laparascopic approach to remove the kidney.

His plan is to review the images, share them with a panel of urologists to formulate a consensus on the best option in my case, and then schedule the operation.

They conducted pre-operative lab work (chest x-ray and blood test), which came back "normal".

I went back to the imaging clinic on Tuesday and requested they send another copy of the images, and I also requested another copy which I sent personally via express mail on yesterday. I just spoke with the nurse who stated that they first received the copy from the imaging clinic yesterday, and it failed as well. The copy I sent was just received this morning and hasn't been tested yet.

I am getting pretty pissed - I opened the original disc and the disc that I sent via express mail with no problems at all, and I tried it on various machines to be sure.

foxhd's picture
foxhd
Posts: 1920
Joined: Oct 2011

I had had some problems with my disc copies also when being sent to another hospital. I was told that sometimes they load real slow. But also was able to see them on my computer. And I don't know how to do anything except stick it in the slot. I ended up hand delivering mine as I knew it was good. Regarding blood in urine, That was my first clue and it was pouring out. Pain was soon to follow due to what was diagnosed as a thrombus in the renal vein. That was how I was admited. Looking back, it was probably tumor invasion. Now all this occured the evening that I had told my wife hours earlier that I was feeling almost 30 years younger due to my weight training and running. Go figure.

ddantzler's picture
ddantzler
Posts: 21
Joined: Apr 2013

The blood in my urine was quite severe as well, but it only lasted about a week. What's weird is that it started out bright red, and as that week progressed there were huge clots as the blood seemingly dried up. Then, the symptom simply disappeared and I went back to life as normal, that is until I saw just a few random clots which inspired the CT scan, and now I am here. I feel lucky that I had the symptom and that the tumor was found so small.

todd121
Posts: 593
Joined: Dec 2012

I first had blood in my urine the night of my birthday a year before my nephrectomy. Unfortunately for me, I had been out celebrating with friends and had an abnormally large amount of alcohol of many different types (which is pretty unusual), including a red velvet martini. It was, after all, my 50th birthday. But during the night after getting home while taking a shower, I'm not ashamed to admit (this cancer and the nephrectomy has just about relieved me of almost all of my shyness) that I peed red on the shower floor. It was scary. I had just taken a rather large dose of Ibuprofen for my headache that was already starting at 4am. It happened again about 1-2 hours later, then never happened again for 1 whole year! When I went to the doctor 1-2 weeks later for a checkup and asked about this, they were confused enough about all the alcohol and Ibuprofen, that they couldn't imagine what had caused it. They did a urinalysis, and it was normal.

A year later when it came back, it lasted 2-3 days and ended with blood clots like yours. I also had some pretty severe pain when I passed those clots that lasted a few hours and felt very much like passing a kidney stone (another joy of life I have experienced). However, when the clots were gone the blood disappeared and I didn't have any more bleeding. Thank goodness the ER doc didn't listen to my theory of it being a kidney stone and he did the CT scan "just in case". The tumor was just under 7 cm.

Todd

ddantzler's picture
ddantzler
Posts: 21
Joined: Apr 2013

Wow, a lot to report today:

The doctor's office called me this morning at 7:00 AM, to say that they were able to review the disc, and that the doctor had reviewed my situation and shared it with a team who agreed that the best approach for me would be retrioperitoneal laparoscopic radical nephrectomy. Due to the tumor location, near the the renal vein and artery, nephron sparing surgery will not be possible in my situation.

I traveled back to the hospital today for final pre-operative work and signing of release forms.

I will have the procedure on Tuesday, April 16. I was told that if all goes as planned, I will be released from the hospital the following day, though there is a possibility of staying until Wednesday if there is severe pain or complications that arise during the procedure. The surgery will be conducted under general anesthesia.

Pathology results should be provided within 5 days, and I'll have a follow-up appointment 2 weeks post-op in order to detail a surveillance routine, which will likely be periodic CT scans for the next 5 years or so, with intervals based on the pathology.

You all have all been a major help and a great support system! Please keep me in your thoughts and prayers as I go through the procedure. I'll be online to let you know how it goes post-operative.

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

"I will have the procedure on Tuesday, April 16. I was told that if all goes as planned, I will be released from the hospital the following day, though there is a possibility of staying until Wednesday if there is severe pain or complications that arise during the procedure. The surgery will be conducted under general anesthesia."

Where I am, Wednesday is the day after Tuesday! Smile  The very idea of the op not being under a general makes the blood run cold.

It sounds as if you have things well set up for success but, young and fit though you are, don't depend on getting out so rapidly - it's major surgery, even when laparoscopic.  If you haven't already, it will be worth reading a bit about how long it takes to resume normal activities so that you don't overdo it too soon and set your recovery back.  

roaddr23's picture
roaddr23
Posts: 77
Joined: Jan 2013

HI all...my computer has been trying to die again,,,I guess I better figure out how to use Windows 8 on the new laptop I got for Christmas...I hate to repeat myself but you are new so I will give you the short version. In Dec 2002 I had a large mass in my left Kidney. I live in wider suburbs of Washington, DC and am lucky to have access to wonderful cutting edge Medicine. On Dec 18, 2002 I was the first patient to have my kidney (left) removed laproscopically at Washington Hospital Center in DC and I would definitely opt for that in your case if possible. But you have options now that I didn't have back then and since your tumors are on the small side you may be lucky to just have a partial removal of an area of kidney instead of the entire kidney. In Dec 2012 I was diagnosed with 2 small tumors, 2.1 cm and 2.8 cm...Once again I went to WAshington Hospital Center in DC. Since I only had one kidney I was extremely lucky to be able to have a partial nephrectomy on my right kidney...I had the surgery on FEb 8, 2013 and got out of the hospital on Feb 9, 2013. They take enough tissue around the tumor to be sure they got it all. All of my tumors were encapsulated so once they were removed I was cancer free both times. The most important thing here is conscientous fllow up with an oncologist after surgery. I was sent by my PCP to Endocrinologist because with both cancer incidents I had the horrible sweats that most of us know about. I did a 24 hour Urine and actually saw the endo this AM...everything is perfect with 6/8ths of a kidney that I have left and by the time the month had gone by the sweats have decreased to one or two a week from 3-4 a day as my kidney has healed. You are also lucky to live in an area with excellent access to good, new cutting edge procedures...I would like to call you Primary Dr and scream at him for ignoring the blood in your Urine...luckily the most common kidney cancer is slow growing but it has such general symptoms that can be passed off as something else so easily blood in the Urine should never be ignored by a physician...You have come to the right place...there are so many knowledgeable people here and so much support and compassion they will get you through this. I have been blessed twice and I am going to do my best to bring the signs and symptoms of this cancer to the public and maybe work on some of the older Doc's too...Best of Luck to you...will be reading to see how it goes and sending out good energy and prayers for you and your family.

Wow, this is a pretty short post for me ,LOL

 

ddantzler's picture
ddantzler
Posts: 21
Joined: Apr 2013

Thanks for sharing your story and for the encouragement. I feel blessed to have had symptoms and found this tumor so early.

cran1's picture
cran1
Posts: 128
Joined: Mar 2013

You will be in my thoughts D. I go under the knife May 1st and can't wait.

foxhd's picture
foxhd
Posts: 1920
Joined: Oct 2011

Having 2 kidneys is over rated. Be very patient recovering. As Gary will reiterate, drink plenty of water and walk. I was jogging and golfing in a month. May not be recommended for everyone though.

donna_lee's picture
donna_lee
Posts: 407
Joined: Feb 2009

I doubt if the prof was my brother, who was head of Vet Radiology for years.  He does know the difference between a goat and a ghost.  I'll ask him if he's heard the joke.

War Eagle!!

Donna

ddantzler's picture
ddantzler
Posts: 21
Joined: Apr 2013

I had the laparascopic radical nephrectomy on Tuesday, and everything went well. I went home on Tuesday and am in the recovery process. Still taking pain medicine and looking forward to hearing from the doctor regarding the pathology. I will let you know when I hear something.

cran1's picture
cran1
Posts: 128
Joined: Mar 2013

Glad to hear everything went well. I'll be going under the knife in 10 days. Best of luck D.

 

ddantzler's picture
ddantzler
Posts: 21
Joined: Apr 2013

Everything went very well, hang in there I'm sure your procedure will go well just as mine did! I do feel like I underestimated the pain a bit, particularly because I was told laparoscopic would be very light on pain. I have had no previous surgeries to know what I was getting into, so it's shocking how painful the experience has been, but it's not at all unbearable. I was able to walk nearly a mile today at a pretty low pace, and have been walking a bit more and more each day since I was released on Thursday. Good luck cran!

ddantzler's picture
ddantzler
Posts: 21
Joined: Apr 2013

The doctor called with the pathology results today. Clear cell renal cell carcinoma, 3.5 cm tumor (Stage 1). Fuhrman grade 2. He said that it was all contained within the kidney, and that the prognosis is very good. I will see him again on May 6th, and expect that I will get a letter clearing me to return to work and be told that I will have the standard interval CT scan follow-up procedure that most of you have.

I appreciate you all listening and wish you the best as you continue your struggle. It's been a whirlwind for me, hard to believe it's coming to a close soon!

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

It was caught early, you handled the situation sensibly and you're continuing to do so, so the outcome has been as good as you could have hoped for.  Prospects are excellent - you got over the bump in the road fine and now it's back to smooth travelling with careful, not rushed,  return to normal living with just the routine monitoring to see that all continues to be fine.  Congratulations!

Galrim's picture
Galrim
Posts: 278
Joined: Apr 2013

...good histology :-)

Now comes the hard part, you HAD cancer, you dont have it anymore. And getting that fact to really settle mentally is a challenge for most people, so dont freak out if the anxiety doesnt disappear right away.

 

/G

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

That's a point very well worth making - in the anti-climax after all the turmoil of the surgery and the initial stages of recovery, many patients find it surprisingly hard to settle down into 'normal' life again - it's not the same and it takes a bit of adjustment to accept the situation and learn to live with it in the happiest way possible. Many benefit from some counselling to strike the best possible new balance.

NanoSecond's picture
NanoSecond
Posts: 531
Joined: Oct 2012

G,

Sorry but I have to point the following out and emphasize it emphatically.  All he now has is no visible evidence of disease (i.e. "NED") but that does not mean he "had" cancer or that he does not "have" it now.

Microscopic Dormant Tumor Cells (DTC's) can and do remain in the body.  But why some people later develop metastases from them and others do not is still a total mystery.

The point here is never to let one's guard down.

 

 

 

Galrim's picture
Galrim
Posts: 278
Joined: Apr 2013

My point is not to let your guard down, absolutely not. But in terms of regaining a mental and physical full recovery; if you had nephrectomy as an intended curative solution, regarding yourself as "ex" is in my opinion an important step in the mental healing process. Otherwise you can quickly end up worrying about dormant rcc cells the rest of your life...

/G

NanoSecond's picture
NanoSecond
Posts: 531
Joined: Oct 2012

G,

I used to pretty much agree with your sentiments - before I delved rather deeply into the dynamics of cancer.  But now I respectfully disagree.  Here is why.

I too was extremely lucky in that my primary tumor was found to be fully encapsulated in my left kidney.  Admittedly it was much larger (11cm) which put me at greater risk for future metastasis.

Regardless, I paid no attention to that risk. When I was told that I was "cancer free" after surgery it came as such a relief I that I pretty much went right back to my old lifestyle and ignored some important early clues about paying close attention to proper diet and getting sufficient exercise.  [Now for some old-school oncologists these kinds of topics can still to be "safely" ignored.  But I think they are very mistaken and I believe that recent discoveries underscore this.]

After surgery I was then routinely subject to CT scans every 3 to 4 months.  For 2+ years I continued to receive reports that I was "NED".  But that all changed this past July when mets were discovered on my sacrum and left femur.  You can bet that got my immediate attention.

Since then I have learned quite a bit about what one might do to enhance either targeted or chemo therapies based on proper nutrition.  All of this is based on hard science and also by viewing cancer as primarily a "metabolic" disease - not just a "genomic" one.  So far I have had great success in this kind of approach.  I have been showing "dramatic" response to my treatment that uses a combination of Sutent plus Xgeva - while all the time I have not had any significant side effects to taking either of these drugs. 

Still, everything I now know I also know is far more effective for anyone "healthy" but trying to prevent getting cancer in the first place.  Furthermore, I have my own personal belief that, based on this, one can help minimize the possibility of developing any mets - and/or slowing their proliferation.

This is a very long-winded way of saying that I wish I knew back then - right after my surgery in May 2010 and before I eventually graduated into stage IV - what I know now.

 

Galrim's picture
Galrim
Posts: 278
Joined: Apr 2013

I think the event of having diagnosed with cancer is a game changer for anyone. How it affects you is a very individual thing. From an overall perspective I dont disagree with your approach of being alert and changing any bad habits, be it food, smoking, drinking or whatever. But, that said, your reaction to it all depends pretty much on your mental condition and mental stamina. Some deal with it in a very proactive way. some drown in anxiety and fear, some completely ignore it and go into a kind of denial post-op.

My point is that disregarding which path you walk down afterwards, it will ALWAYS be a good starter to tell yourself:

I had it. Its gone ("visibly). How do I move on from here?

But, I think in a way we overall agree on this, our differences lies in the means not the goal.

/G (and guess we cant cook more soup on this goat) :-)

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