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Biner
Posts: 53
Joined: Apr 2020

Hello everyone

I'm George 41 years old

About a year ago I was diagnosed with complex cyst 2.8x2.5 cm , the doctor said don't worry its happen,i don't have any symptoms or blood work abnormalities, and they said I have to do CT scan after 6-12 months.I did right after the medical exam in February, and the CT scan shows 4.5x3.7cm solid left renal mass demonstrating some internal cystic/necrotic change as well as calcifications.I was sent to Urologist for consultation, I found one urologist oncologist and did appointment.I still did not believe in what was happening, I was very rarely ill, and went to the doctor only for an annual examination. I didn’t get any pain, blood tests showed only an increase in cholesterol and a little sugar, but this is normal for my age. I went 3 times to the gym weekly, but I was a former smoker.

The doctor met me and looked at my CT and said that it was 90% carcinoma, and an operation was needed to remove it. He can do a partial removal using a robot. He also said that apparently the stage is still early and he hopes for a full recovery.I remember we left the office and wandered without knowing everything, I hoped until the last that the doctor would say it was not cancer, all right, go home. Two weeks later, the operation was scheduled, and the appointed day my wife and I went to the hospital. Everything went well, after the operation, the surgeon said that he cut out everything that was and received a negative margin which is very good. The next day I was discharged from the hospital, I could already walk, the tests showed nothing bad, except for a little high blood pressure and a small fewer.I returned home to heal the wounds, a couple of weeks later I felt good and could do everything that I did before. Two weeks later the histological result was ready, it was a shock for me .Final diagnosis

A. Deep margin of renal mass, excision:

Renal parenchyma, negative for carcinoma.

B. Left renal mass, partial nephrectomy:

Clear cell renal cell carcinoma, Fuhrman / Nuclear Grade 2.

Tumor measures 4.1 x 3.6 x 3.4 cm.

Tumor invades perinephric fat.

Tumor cells present at the parenchymal and perinephric fat margins

pT3a pNx

I understand at stage 3 not 1, and chances survival 67% 5 year

I had a conversation with an oncologist who is now conducting my case, he said that I need to have a CT scan in 3 months and then every 6 months in 5 years. I also need adjuvant therapy to avoid recurrence, which in my case is 30-40%. Now our family (the child does not know) is depressed, we do not know what to do and how to live on, and whether there is a chance for life and what this life will be like. We recently arrived in America with plans and hopes, I recently opened my own business, and now, everything is falling out of my hands. Now I am on sick leave, what to do then I don’t even know.

 

stub1969's picture
stub1969
Posts: 864
Joined: Jul 2016

Welcome to our forum.  I've been on this board for almost four years and I also read posts(almost daily) from the smartpatients forum.  Mind you, this certainly does not make me an expert on this, but numerous topics about starting adjuvant therapy to avoid recurrence just does not hold water.  We have several members here that have had numerous surgeries for reoccurrence and still have not started therapy.  It leads me to ask you if your doctor is an RCC specialist.  I strongly encourage you to seek a second opinion on this.

A couple of items to help you navigate this site a little better.  At the top right is the icon "Search CSN Content".  Click that and search for a topic--stage 3 for instance.  Also, click on the "name" of the member and it will take you to their personal page so you can read about their journey.  If you look at mine, I was diagnosed at 47.  I was (and am) a healthy male that likes to run half marathons and work out in the gym.  I'm fit and consider myself healthy.  It was such a shock to learn I had cancer, just as it is to you and everybody else. 

 

Last item--yes, stage 3 certainly increases your chance of reoccurrence, but which side of the 60/70% do you want to be on?  You have a good chance to not have a reoccurrence.  But, if you do, they will be able to catch it early and put a plan in place to help you. 

Try to catch your breath and lean on us with questions.  We'll help as much as you want us too.

Blessing--Stub 

Biner
Posts: 53
Joined: Apr 2020

I, too, to be honest, not sure, all these drugs have a very big side effect. After the operation and diagnosis, I was assigned an oncologist and, judging by his data, he is very professional with great experience, a professor in oncology. Although my surgeon was skeptical of adjuvant therapy to prevent recurrence he said that was all my choice. I also saw few graphics and looks like im intermediate group, not high risk.

eug91's picture
eug91
Posts: 254
Joined: Jan 2019

Sorry you had to join us, but this is a great forum here. We know what you're going through, so we're here for you if you have questions or just need to vent. 

First off, I'm not sure I fully understand and I might be missing something, but I'm a little confused at why you're so unhappy about the diagnosis. From what you posted, with negative margins on a partial neph, it sounds like your surgeon got all of the tumor out and you're now cancer free. If I'm mistaken, I apologize, but it sounds like you posted good news. While it's not fun to find out you had cancer, the tumor is out and the cancer is gone. 

Regardless, the mental part of this process can be tougher than the physical part. You're not alone in this. Rely on your friends and family, talk to us here, talk to your doctor. You're gonna have bad days - we all do - so be prepared. Take it day by day. If the depression becomes overwhelming, tell your doctor. But just like getting through your nephrectomy, you got through it - you're gonna get through this, too. 

Next - and maybe most importantly - throw out that 5 year survival rate. That's outdated information. Medical advances in kidney cancer treatment have been rapid and constant. That number you found by googling may have been accurate years ago, but now it's really outdated. Years ago there were only a handful of treatments - now there're a whole bunch. Case in point, the five-year survival rate for stage 4 was 8%, then it was 12%, then in 2019 UTSW announced they got stage 4 surival rates to 25%. 

You're only 41, your tumor was caught when it was barely over 4cm, your margins were negative, etc. You have MANY reasons to be optimistic about your life, your family, your business, your hopes and future. 

Please take care of your health, continue walking and drinking lots of water. And make sure you do your follow-up scans as scheduled. If it does come back, you can catch it early so you have the best chance of beating it again. And as for adjuvant therapy, some doctors like it - others don't. Talk to your doctor about it. 

Anyways, great job getting through your nephrectomy. It's not easy and you did it, so well done. We're here for you if you have questions.

Here's to continued healing! You can do this!

Biner
Posts: 53
Joined: Apr 2020

That says my path diagnose

 Margins:

Renal Parenchymal Not involved at final margin (part A)

Perinephric Fat Involved by tumor

icemantoo's picture
icemantoo
Posts: 3279
Joined: Jan 2010

George.

 

 

 

They ggave me the same odds almoct 18 years ago. I was 58 years young. Sending good karma.

 

 

 

 

icemantoo

Biner
Posts: 53
Joined: Apr 2020

your example is encouraging

Biner
Posts: 53
Joined: Apr 2020

PLAN:

RCC - he has not undergone staging of the chest, and we will arrange for restaging scans, including the chest. Assuming that looks clear, we discussed adjuvant therapy options. We discussed that sunitinib is approved, but there PFS benefit without OS benefit. We also discussed the Checkmate 914 trial of adjuvant ipi + nivo vs placebo + placebo. He would like to avoid toxicity of therapy if there is no proven benefit, and does not want to participate in the trial. Therefore we will pursue surveillance imaging, initially every 3 months.

donna_lee's picture
donna_lee
Posts: 963
Joined: Feb 2009

I had NO sypmtoms that I was living with for years.  I saw my PC Doc yearly, or more often if necessary.  The only thing that seemed to change was my BP had continured to inch up, but it was thought to be related to age and/or stress.  In 2005, I was chairman of a statewide convention, put on by volunteers.  Stess-sometimes like herding cats, and before a lot of people had email.  After the convention, I was tired, of course, and episodes of nausea and vomiting were maybe gall bladder acting up.

My yearly check up in April 2006 andmy new PC ordered labs, UA, and as an afterthought I mentioned the nausea/vomiting, so he ordered an Ultrasound.  Whoa, Nellie.  The US found masses in my R. Kidney and in my liver and the UA found heamaturia (but not enough that I noticed).  Skip thru all the tests, appts., referrals and death sentence of 5-7 months if nothing could be done.  Surgery in late June-out came the R. Kidney, set of nodes behind the kidney (2 of 11 positive), left lobe of liver (yes-a tumor), several wedges of R. lobe of liver that turned out to be cysts, and the congenitally defective gall bladder and duct.  Pathology read T2N2M1, Fuhrman 3-4 for Clear Cell Renal Carcinoma.  Single nodes in 2007 and 2008 were caught on every 3 month CT's and surgically removed.  Since then, no other type of treatment for cancer has been offered or considered.  Just CT's, and eventually a periodic combination of Chest X-ray and abd./pelvic US.  As other things were found-enlarged thyroid-thickened esophagus-and a few assorted retests, I'm still here 14 years later.

At the time of the first surgery, the Oncology specialist said I would not be put into the Sunitinib Post as and I had no active site they could monitor. (Well, I did, but he didn't know it.)

All I can offer is a helping of "I'm sorry" and Good luck on this new venture.  It can be a rocky road with decisions to be made.  I didn't join this club until I was 63-Iceman has been her longer than I have.

Hugs,

donna_lee

Biner
Posts: 53
Joined: Apr 2020

Today I had post opp appointment and my surgeon also recommended a trial to prevent recurrence, maybe because of my age. And they said I have to do CT every 3 months (not 6) I don't know why

stub1969's picture
stub1969
Posts: 864
Joined: Jul 2016

Obviously, it will be hard to not follow the recommendations of your medical team, but I hope you put some thought into this.  The trial is a crapshoot as to whether you will actually get the drug.  As in any trial, they have to have a control group that doesn't get the med.  If you do get the med, then you will have to deal with the side effects of the drug--without any guarantee it will do any good preventing reoccurrence.

As far as scan cycles, every three months for a bit is probably a good thing,  You have higher odds of something popping up within the first couple of years.

I know you have a lot on your mind already--I'm sorry if I'm adding to your stress.  Listen to your heart--you'll know what to do.

Wishing you only the best!

Stub     

Biner
Posts: 53
Joined: Apr 2020

Today I saw my medical record, and here is again he writes im agree for adjuvant therapy but it did say nothing. I'm just asked what surgeon opinion about adjuvant. Why do they so want to make me a laboratory rat?

Deep surgical resection margin is clear. The inked outer surface has a positive margin, but this area was a part of the tumor that was exophytic and the actual resection margin (deep margin) is clear

Given pT3 nature of disease he saw dr vanderweele and has elected to proceed with the adjuvant trial

Plan
- continue f/u with Dr. Vanderweele for imaging and discussion -RTC 3 mos with me

eug91's picture
eug91
Posts: 254
Joined: Jan 2019

Some docs believe in it, some don't. My doctor felt the same as stub - that there isn't enough evidence in favor of adjuvant therapy, so I didn't have any.

But it really depends on you and your doctor. If you have concerns, communicate them with your doctor. 

And please make sure you keep your follow-ups. 3 months in the beginning is fine, then you'll probably graduate to 6 months, then 12 months, etc.

Good luck! 

a_oaklee
Posts: 523
Joined: Nov 2013

The biggest shock is hearing you have cancer, and it's going to take awhile before you can come  to terms with that psychologically.  You had your surgery and it went well, so now that is behind you.  The tumor was on the small size, and you are Stage 3 Grade 2.   I totally agree with the others above who are thinking that you are in a good place, all things considered.  Just so you know, beyond taking care of your general health, like good nutrition and getting adequate sleep and exercise, the only thing you need to do is your doctors appointments and your scans.  If I were you I would enjoy my life.  

I am here for my husband who was diagnosed at Stage 4 Grade 3 in 2012.  He is doing very well.  The smartest thing we did was to go to a major medical center teaching hospital for care.  He has an experienced renal oncologist.  It makes all the difference in the world from the general medical oncologists in our small town.  Surprisingly, not all doctors give the best advice.  You do have plenty of time to get more information before you consider any treatments.

None of the specialists we saw believed in the benefit of adjuvant therapy.  This was explained to us prior to them finding out his cancer was advanced.  Because he was Stage 4 he did have treatment.  I highly recommend that you tell your doctor you would like a second opinion.  If they are telling you that adjuvant therapy is helpful, you can also ask to read that publication.  One thing for you to consider at your young age is if you do treatments now, you can end up exempt from a clinical trial that might want you to have had no prior treatment.  Clinical trials help with expenses.

Re being a guinea pig....absolutely...that can happen.  We had a doctor who wanted to leave the tumor in my husband and not surgically remove it.  Mostly because he was Stage 4 and they didn't think he would live very long.  I thought it was bizarre as my husband was very healthy.  I researched the trials at the institution and found out that oncologist was in charge of a trial to compare people who had surgery with people who didn't.  I think it's shameful that they chose my husband to be a guinea pig on the side of lets just not do anything.  We got the heck out of there.

Another thing for you to consider is that medications can have side effects.  Personally I think why feel poorly, if you don't need to.  That being said my husband takes targeted thereapy and his side effects have been minimal.  Remember he was diagnosed in 2012, so his treatment has not included immunotherapy.  He has not had a recurrence since 2013.  

As you read more, some people who have had recurrence have dealt with it by surgical removal.  Which frankly is the number one way to proceed.  My husband has had radiation therapy.  Another approach in certain situations.  

The choices you are making right now are yours to make.  Not your doctors.  They can advise you, and you decide what to do.

Finally:  Regarding statistics.  I personally find them worthless.  You do not know, nor will you ever know where you are as an individual on that spectrum.  In 2012, my husbands cancer had a 5% chance of 5 year survival.  How do you decide if he is part of the 95, or the 5 percent?  For the record, my husband didn't want to know anything re statistics or survival stats.  It was helpful to him to just be positive and live life unaware, because he understood it didn't matter what the stats say.  

I hope you find some peace of mind reading peoples stories here.  Its a supportive group.  You can also join SmartPatients to get some more information regarding adjuvant treatment.  

Best wishes always.

lobbyist0724's picture
lobbyist0724
Posts: 418
Joined: Sep 2016

Hi Biner, I am sorry to hear what you are facing but at least you have got it removed. My tumor is similar to your ins size, it is cystic and is also Grade 2. I don't have a positive margin but a very close one, 0.5mm. I was shocked seeing the pathology report and asked for a retest of the sample. So my first year was scheduled to have a scan for every 3 months but Ultrasound + chest Xray because of my age. 

Did your pathology report mention is it a gross margin or a microscopic margin? how much cystic space it has and etc.? 

Btw, is your medical team from a major center and is your doctor an RCC specialist. As cystic RCC is rarer for cystic ccrcc, usually it is not as aggressive unless it is necrotic. Also, based on the clinical trial result from the adjuvant treatment, only the more advanced stage and more aggressive grade seem to be beneficial from the treatment. Perhaps, if you want to get a second opinion from an RCC specialist with experience with cystic tumors.

All the best!

Biner
Posts: 53
Joined: Apr 2020

Good afternoon, unfortunately, my surgeon does not particularly focus on the cyst and said that it was not very important. Although when I consulted with another surgeon urologist, he told me that I had a cyst inside the kidney and a solid tumor on top of the outside (exophistic). But pathological analysis does not focus on this and writes general information, including size, although 4.1 cm in size includes a cyst, I was told that in the United States they do not take into account acid and solid mass if they find cancer there.

Specimen/Gross Description

A. The specimen is received fresh intraoperatively for consultation from Dr. Kundu, labeled with the patient's name and designated on the container as "deep margin renal mass," and consists of a 0.9 x 0.6 x 0.2 cm pink-tan soft tissue fragment that is entirely frozen for intraoperative consultation. The frozen section results are rendered by Dr. Blanco and are "RENAL PARENCHYMA, NEGATIVE FOR TUMOR." The intraoperative consultation diagnosis is communicated to Dr. Kundu in the operating room at 11:26 a.m. on March 20, 2020. The specimen is entirely submitted in cassette A1 (frozen section remnant) .
 
B. Received fresh, labeled with the patient's name and designated on the container as "left renal mass," is a 62.6 gram partial nephrectomy specimen (6.8 x 6.2 x 3.5 cm) that consists of red-brown, homogeneous renal parenchyma (5.3 x 5.0 x 3.0 cm) with surrounding yellow, lobulated perinephric adipose tissue and a focal area of intact Gerota's fascia. The parenchymal resection margin is inked blue and the perinephric adipose tissue, including Gerota's fascia is inked black. Sectioning reveals a tan-yellow to red, hemorrhagic and variegated, cystic mass (4.1 x 3.6 x 3.4 cm) that grossly abuts the inked parenchymal margin, kidney capsule, perinephric adipose tissue and is 0.1 cm from Gerota's fascia. The remaining kidney parenchyma is focally pale with a distinct corticomedullary junction. Gross photographs are obtained.
 
hemorrhagic and variegated, cystic mass (4.1 x 3.6 x 3.4 cm)
lobbyist0724's picture
lobbyist0724
Posts: 418
Joined: Sep 2016

That's why I am not sure is your surgeon an RCC specialist and a second opinion can at least give you more confident on the plan.

Also, I see that the mass is grossly abuts the inked parenchymal margin, but it didn't mention the margin is positive. Is there correct?

Biner
Posts: 53
Joined: Apr 2020

No surgeon was very professional and did a great job

Tumor invades perinephric fat.

Tumor cells present at the parenchymal and perinephric fat margins but deep margin clear

 

Biner
Posts: 53
Joined: Apr 2020

Today there was a second opinion with a doctor Walter Stadler advised to me on a forum smartpatients, he also advised me to agree to trial, does it make sense to make a third opinion or already agree with the conclusions of 3 doctors

a_oaklee
Posts: 523
Joined: Nov 2013

I dont understand.  One of your doctors recommended surveillance.  You wrote that in a previous post.  Was that a surgeon or a urooncologist?   

Can you explain what type of trial they are suggesting?

Its definetly your own personal decision, and I wish you the best of luck in the choice that you make.  

The only part of this that really haunts me is that there isnt one proven treatment that works for everyone.   And I dont understand how you know if a drug is helping you when you have nothing to measure.  I hope the doctors have fully explained everything to you.  At some point, you will have to trust their expertise.

Biner
Posts: 53
Joined: Apr 2020

The surgeon who operated said that I would have to do a CT scan every 6 months, but due to the fact that he transferred my case to the oncologist because of stage 3, he said that adjuvant therapy is desirable since there is a big chance of relapse. I decided to take a second opinion and turned to doctor from another clinic, they did another analysis path test and said that Furman 3 and not 2, and this further increases the chances of a relapse.I understand that the choice is mine, but I don’t want to blame myself after a while that I did nothing to cure myself, what's the point of sitting and waiting for metastases to occur? they will be at everyone a few lucky ones or those who have stage 1 and not an aggressive tumor. Another question, if you do not believe the doctors, why go to them? I have 3 certified oncologists who said that I need treatment, who am I to say that I am smarter? And what am I losing, in the case of trial, 50% of what will give water and 50% of what is the drug, well, if side effects lead to death, it will even better relieve mental torment and further life in fear. 

a_oaklee
Posts: 523
Joined: Nov 2013

Thanks for writing back and explaining.  Our purpose to go to different doctors for additional opinions.  In our case, we came across one who didnt care about my husband and wanted him to not have his tumor removed.  My husband wouldnt be alive if we went along with that doc.   

If we had three doctors all agreeing to a plan, as you do, my husband would go along with that decision.  He would think that they must be right, as they all agree.  He would also feel good that he took the time to decide.

I do want to tell you that I appreciate anyone who participates in clinical trials, as i believe it helps others too.

Sorry to hear you are furman 3.  My husband is too and is stage 4.  I think you have a hopeful future.

Biner
Posts: 53
Joined: Apr 2020

They said its not Fuhrman grade the isup/who 3, Fuhrman still 2

Biner
Posts: 53
Joined: Apr 2020

Yes, I have almost stage 4 and there is only a question of time.

AliceB1950's picture
AliceB1950
Posts: 70
Joined: Jun 2019

Your cancer has been removed and it was stage 3.  Saying "It's only a matter of time" is unnecessarily fatalistic and not true.  Many stage 3 cancer patients have no further problems.

Biner
Posts: 53
Joined: Apr 2020

FINDINGS:
There is no pleural or pericardial effusion. No enlarged mediastinal or axillary lymph nodes are identified.

The lungs are clear.

There are no radiopaque gallstones or dilated ducts, and the liver, spleen,

The right kidney is normal.

There are new postoperative changes on the left consistent with partial nephrectomy with residual thickening/scarring of the perinephric fascia.. There is no ascites.

No enlarged lymph nodes are identified.

There are no dilated or thickened loops of bowel. The rectum is distended with stool.

There are no destructive osseous lesions.

IMPRESSION:
Status post partial left nephrectomy with expected postoperative changes and no acute process

a_oaklee
Posts: 523
Joined: Nov 2013

What is the title to this report?  Is it an xray or full body CT scan?

Whatever this report is, the results are great!

Biner
Posts: 53
Joined: Apr 2020

abdomen chest pelvis ct with contrast

I'm asking because nobody called me with result i download report from hospital account

donna_lee's picture
donna_lee
Posts: 963
Joined: Feb 2009

Since I've encountered both in the past. No NED twice and NED.  And many questionable....let's explore with another test in various organs or locations.  Make your plans with complete info and then stop worrying.

Good luck and Hugs,

donna_lee

Biner
Posts: 53
Joined: Apr 2020

CT scan looks good - no evidence of recurrence. You can continue to see Dr. for follow-up.

a_oaklee
Posts: 523
Joined: Nov 2013

Congratulations George.  You have no evidence of disease.  NED.  Which means, you had cancer, but you do not have cancer anymore.  Its time to rejoice.  The only thing you must do is have your followup scans when they are due.  Best wishes for you.

Smi
Posts: 19
Joined: Jul 2018

Congratulations!!!

Mmoses25
Posts: 62
Joined: May 2020

You are Ned good job

Vegas Tommy's picture
Vegas Tommy
Posts: 11
Joined: Aug 2020

My name is Tommy and I Have Stage 4 RCC that has spread to the lymphnodes. I am here to ask for advice on what meds should be prescribed as I am being treated by the VA and I am not too confident.

Back in Jan. 2020 they noticed I had a 2cm mass/ cyst in my right kidney and they wanted to monitor it and check on it in 9 months. Well in June I started pissing blood clots....alot! I went to the hospital and they did testing,

CT scan, Pet scan, ect..... They said my kidney was non functioning and I had a 6 cm mass with enlarged lymphnodes. The surgeon wants to remove the kidney but they want to put me on chemo prior to the surgery to shrink and kill

any residuals that may be in my body. I do a MRI tomorrow and meet with Oncologist on Wed. 

I just don't understand how a 55 year old can go from a cyst to stage 4 in under 6 months! Did they drop the ball? Just doesnt seem right.

They want to hit me with chemo very aggressively and then pull the kidney out as they Doctor said it still has some function and it will help with the chemo. The doc said I have a 20% shot at 5 years survival but I think 

I should fly by 5 years. What is this Keytruda-Inlyta medication...looks like some of you are having success with this! Some of you have the best doctors out there...what should I be asking? Thanks for sharing.

misterace
Posts: 19
Joined: Jun 2020

Hi Tommy,

I am so sorry to hear that you are going through this. While I can only provide you with limited advice directly relevant to your situation, I would advise that you create a new post so that eveyrone can see your post and respond to it accordingly, this way it doesn't get buried in another person's thread. Regarding your situation, please try to see if you can find a urologist that specializes exclusively in RCC so that you can get some clear answers. It sounds like you are in Vegas, I do not know any in that area, but there are quite a few here in Southern California. Mine is Dr. Brian Shuch at UCLA, and he is wonderful. 

 

Also, the smartpatients.com kidney cancer forum would also be a great resource for you as there are many long term stage 4 survivors there with tons of information. Please take a look there. 

 

I am sending you positive thoughts, love, and prayer for your recovery. I hope that you will find the correct treatment soon to heal you. 

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