CSN Login
Members Online: 9

You are here

Totally Confused!!!

AnnissaP's picture
AnnissaP
Posts: 632
Joined: Sep 2017

Hi all! I am new here and would appreciate any feedback/experiences. I will try to make a long story short. Left kidney cyst has been monotored for 1 yr. A few weeks ago I had an ultrasound and a solid mass showed up as well. Had a CT scan with contrast dye and it was confirmed...Solid mass being 3.6cm in size (along with a 6cm cyst). I saw a urologist this past Monday who said she is not convinced it is a solid mass, but does not know. She said the cyst may have "bled into itself." She suggested the watch and wait method which I turned down. She then offered a biopsy. Needless to say, I am getting a second opinion. It is clear on the images that I do have a cyst because it showed up as a black cirlce. The questionable solid mass lit up because it took in the contrast dye. It is a weird, long, bean-shaped looking thing. Anyway, to my surprise, I saw my family doctor yesterday because I was totally unsettled by this urologist's response. My family doctor showed me the results from the CT scan the radiologist sent. I saw it for myself. It read.....Treat as renal cell carcenoma until proven otherwise!!!!!! My question is why would the urologist completely ingnore this AND not tell me??? They all know my family history....Dad died from cancer and his mom did as well.  His dad had cancer and so does his brother right now. My aunt died from cancer, 3 uncles had it and so did my grandmother. My family doctor said biopsies are NOT reliable because the cancer can be missed. He told me they always treat these masses as "worse case scenario" and take them out. Does that one urologist think this is a joke? Is she that young and arrogant to just act like she knows everything and leave it? My family doctor takes this more serious than she does. To me, time is of the essence. Thanks for listening and for any/all feedback. Sorry so long!!!!

icemantoo's picture
icemantoo
Posts: 3282
Joined: Jan 2010

Annissa,

 

Lets see what the second opinion says that you scheduled which would have been my suggestion if you had not scheduled it already.

 

Icemantoo

AnnissaP's picture
AnnissaP
Posts: 632
Joined: Sep 2017

Hi. My doctor sent off the referral so I am just waiting!

BoondockSaint's picture
BoondockSaint
Posts: 242
Joined: Mar 2017

I agree......definitely, a second opinion is warranted. Keep us posted.

AnnissaP's picture
AnnissaP
Posts: 632
Joined: Sep 2017

Thanks. Will do!!

Optimisticgirl's picture
Optimisticgirl
Posts: 82
Joined: Aug 2017

I would want second opinion 

AnnissaP's picture
AnnissaP
Posts: 632
Joined: Sep 2017

Good to know it is not just me thinking this way. Thank you.

foxhd's picture
foxhd
Posts: 3183
Joined: Oct 2011

Do not accept this comment as only my opinion. I speak from reading thousands of others advice. Most docs do not know current trends in renal cancer. If a hundred docs were asked if someone with RCC will be alive or dead in 5 years, maybe 90% will say dead. But this is NO LONGER true. As a result, some docs will be happy to follow you along the disease course until....

Sometimes you need to do your own homework. Like persuing second opinions with renal specialists. You know what to do now.

AnnissaP's picture
AnnissaP
Posts: 632
Joined: Sep 2017

Thank you for taking the time to reply. I have been searching and studying. We know our bodies yet a lot of so-called professionals do not seem to care. For 18 mths my Dad saw 8 different doctors. They all said he was fine and probably had a bladder infection. He died from prostate cancer. I am sure anyone can understand my concern regarding waiting or not taking this very serious.

Angie1496's picture
Angie1496
Posts: 154
Joined: Sep 2017

I had a CT guided needle biopsy... the results were non-diagnostic for malignancy but all scans stated treat as RCC. I had 3 opinions and  all 3 did not want to mess around with another biposy.  I had a partial nephrectomy last week.  4.5cm  tumor with clear defined edges, clear cell renal carcinoma. I recommend getting 2nd and 3rd opinions and not messing around too long.  Make an informed decision. a friends daughter had this recently and it was monitored for 6 months becuase she is young and it changed during that time. SHe also has had a partial since then.  Not trying to scare you but definitely do you homework.  I hope you find the answer for you soon!  

AnnissaP's picture
AnnissaP
Posts: 632
Joined: Sep 2017

I really appreciate what you have said. I am trying my best to push them and not mess around. This mass did not show up 6 mths ago and is now 3.6cm!!! I think because I am only 38 they do not believe it can be anything worth worrying over. I wish you a speedy recovery and am glad they took care of your situation.

Rockspin
Posts: 77
Joined: Aug 2017

I had a total kidney removal on Tuesday  and now awaiting the pathologist report. The orig scan said it was 3.7 and the surgeon was positive he got it all out. I'm walking and trying to get back my strength. It was laparoscopic so I have 4 little incisions and one longer one on my old cesaerian scar.

AnnissaP's picture
AnnissaP
Posts: 632
Joined: Sep 2017

Wow. Hoping you heal quickly!! How is the pain (if you don't mind me asking)?

Rockspin
Posts: 77
Joined: Aug 2017

The first few days were a kind of blur. Pain was manageable I was able to slowly walk eat a little but I stopped the heavy meds on the 3 Rd day. I'm just over a week and two days now and I'm recovering much better. I got my pathology report back and it said pT1a furhman grade II.

Angie1496's picture
Angie1496
Posts: 154
Joined: Sep 2017

My friend's daughter is 24. THey said this type cancer isn't common in that age group... yours either!  once it changed her doctor jumped on it though.  SHe has her 1st 6 month scans next week!  I can't understand how yours wasn't seen before?  I read alot about cysts and nonmalignant masses before my surgery.  She was tested to see if what she had was the genetic type RCC but it wasn't.  Thank you for your well wishes!  I hope you get more information soon.  I saw 3 urologists and got 3 similay but different recommendations of what to do. I don't know where you are but John Hopkins has a way to scan and determine if a renal mass is an oncocytoma (not malignant typically) without needing surgery.  I contacted them about the trial they had and it was over but they offered for me to come see them to check mine out.  I didnt go becuase I had a biopsy 2 days later but i can get that information for you.  I emailed on a Sunday and had a reply from the doctor within a couple hours. 

 

 

 

AnnissaP's picture
AnnissaP
Posts: 632
Joined: Sep 2017

The difficulty is that I am in Canada and the healthcare is just awful. Long wait times and non-chalant doctors. I wish there was a way I could drive across the border and be seen in a timely manner. We do not have any type of scan available like you mentioned. That would be great! I question how they did not see the mass before as well, but am not totally surprised.

icemantoo's picture
icemantoo
Posts: 3282
Joined: Jan 2010

Annissa,

Call or contac Kidney Cancer Canada at  4936 Yonge Street, Suite 226, Toronto, ON M2N 6S3, Canada

Phone: (866) 598-7166 and see if they can point you in the right direction. eh
 
 
 
Icemantooo
AnnissaP's picture
AnnissaP
Posts: 632
Joined: Sep 2017

Perfect!! Thanks, eh!! Lol

lobbyist0724's picture
lobbyist0724
Posts: 424
Joined: Sep 2016

Hi Annissa,

In canada, usually when you see "Treat as renal cell carcenoma until proven otherwise" on you CT report regarding a cystic lesion, it can mean a Bosniak III or IV cyst. Bosniak scale  rank the complex cystfrom level I to IV, with four having the highest chance of being malignant. Check this Canadian guideline on Cystic Lesions and small renal mass.

http://www.cua.org/themes/web/assets/files/cua_guideline_on_the_management_of_cystic_renal_lesions.pdf

Management of the Small Renal Mass

 

Also, I recommend you to join Kidney Cancer Canada, the patient advocates there can provide you information dedicate to Canadian.

http://www.kidneycancercanada.ca/member-area/forum/kccforum.aspx?g=mytopics

Also, they are having a National Webinar on Sep 23, where you will have a chance to ask the urologists from cancer center like Sunnybrook.

 

Carmen

lobbyist0724's picture
lobbyist0724
Posts: 424
Joined: Sep 2016

oops, I thought the problem is from the cyst, so please refer to the one about small renal mass.

All the best!

AnnissaP's picture
AnnissaP
Posts: 632
Joined: Sep 2017

Thanks!!!

Steve.Adam's picture
Steve.Adam
Posts: 460
Joined: Oct 2016

The radiologist's report from my first Kat scan had exactly those words 'treat as renal cell carcinoma until proven otherwise'.

He was right (Clear cell RCC).

Maybe your radiologist also knows what she is talking aboot.

Steve

Angie1496's picture
Angie1496
Posts: 154
Joined: Sep 2017

all 3 of my CT's came back with "treat as renal cell carcinoma until proven otherwise"  My first doc looked at the CT and said Yep you have RCC.  I was like how do you know for sure.  Every radiologist that looks at the 3 CT's and the first urologist and 2 urologic oncologist said the same thing.  Today I am sitting here with the knowledge that the first urologist was right.  He was almost giddy because they typically don't find this cancer until it has spread because there are no sypmtoms.  He kept repeating... this saved your life. 

AnnissaP's picture
AnnissaP
Posts: 632
Joined: Sep 2017

You guys have been amazing!!! I am so thankful for your words and feedback!!! I would agree with the radiologist who first said solid mass and then the one who confirmed through the CT scan that it indeed was and to treat it as RCC. Now the wait begins for my appt with this other urologist. I will def check out that website!!!

Angie1496's picture
Angie1496
Posts: 154
Joined: Sep 2017

Keep us posted Annissa!  I hope you get in very soon!

AnnissaP's picture
AnnissaP
Posts: 632
Joined: Sep 2017

I will! Thank you!

AnnissaP's picture
AnnissaP
Posts: 632
Joined: Sep 2017

Great news! I called the office of the new urologist and I see him next Thursday!!!! The secretary was amazing!!!!

BoondockSaint's picture
BoondockSaint
Posts: 242
Joined: Mar 2017

I'm so glad you are getting things rolling now. I know the next few days until you get in are going to be stressful.....Hang in there and keep us updated.

AnnissaP's picture
AnnissaP
Posts: 632
Joined: Sep 2017

Will try my best! I am so relieved it is a short wait. Thanks for the encouragement!!!

Angie1496's picture
Angie1496
Posts: 154
Joined: Sep 2017

Wonderful News!!  I have my followup from surgery the same day!  I will keep you in my prayers!

AnnissaP's picture
AnnissaP
Posts: 632
Joined: Sep 2017

I wish you well!!!! :-)

Kat23502's picture
Kat23502
Posts: 179
Joined: Feb 2016

Hi Annissa! As others have said, a second opinion is most definitely warranted. A mass not showing on CT could be for many reasons. Sometimes it isn't organized enough to uptake the contrast, sometimes physicians just miss things. I suggest from here on out you be sure to obtain copies of all reports and exams. Your best health advocate is yourself. That being said, with a small mass you should do just fine. I had a partial nephrectomy about 18 months now and aside from some scars, my recovery went well.

AnnissaP's picture
AnnissaP
Posts: 632
Joined: Sep 2017

Thanks for the info. I am glad you are doing well. The 2nd urologist is known by my family dr and has a lot of experience. I def want a copy of my CT results. The mass showed up clearly on both tests (ultrasound and CT scan with contrast dye). I just hope this urologist takes care of it!!

AnnissaP's picture
AnnissaP
Posts: 632
Joined: Sep 2017

I have an update! Saw the urologist and he is quite positive it is renal cell carcenoma. He is sending me to an oncologist he knows very well for a partial nephrectomy. He said the tumor does not have characteristics of a benign tumor and that it will be taken care of quickly. He also told me it did not show up on any other scans 6 months and one year ago because the large cyst I have was covering/hiding it. So thankful they saw it this time! I am so relieved this is being taken care of, but am also in denial at this point.

Jan4you's picture
Jan4you
Posts: 1326
Joined: Oct 2013

A warm welcome Annissa!

Glad you got answers and good feedback from folks here!

Not sure why you need to see an oncologist. I take it your urologist does not do this type of surgery for renal cancer? Why not? Just curious.

Most likely your cancer will leave with the surgery and you'll be just fine. 

Of course you'll be monitored for 5 years. Your tumor is in the Stage I category.

Keep us informed. We'll be here for you all the way!

Hugs, Jan

AnnissaP's picture
AnnissaP
Posts: 632
Joined: Sep 2017

Thank you so much! He said he is not qualified to perform the laparascopic surgery so will send me to this other guy who is supposedly highy skilled. I hope this is the first and last time I have to deal with this!!! It hasn't even hit me yet that this is real.

Angie1496's picture
Angie1496
Posts: 154
Joined: Sep 2017

I am so happy you got answers and are oging to  have surgery for this!  I also was referred from my urologist that found the tumor to a urologic oncologist that performed the surgery.  Denial is normal I think.  I know I was.  I am still in disbelief that I am a cancer patient, a survivor.  Keep us posted on the surgery date.  If you have any questions about the surgery and recovery please ask! Kiss

AnnissaP's picture
AnnissaP
Posts: 632
Joined: Sep 2017

I do have a question!! How painful is it and how long is the recovery usually? To get back to "normal" life. I think the reality of it is gradually setting in. We continue on with life and responsibilities so not much time to think about things.

icemantoo's picture
icemantoo
Posts: 3282
Joined: Jan 2010

Annissa,

 

If I told you that I would be laughed off this forum. At 59 I was back to a slow norman in 6 weeks, Everyone is different.

 

Icemantoo

AnnissaP's picture
AnnissaP
Posts: 632
Joined: Sep 2017

Thanks for the honesty. I totally believe that timeline!

Angie1496's picture
Angie1496
Posts: 154
Joined: Sep 2017

The pain was not as bad as I expected it to be. After you wake up and they let you start moving walk as much as you can tolerate. This helps the gas they used to inflate your stomach for surgery. Stay ahead of the pain with your meds. I started working from home 6 days after my surgery. i still seem to tire easily with a lot of activity but feel I am almost back to normal. I am going to try the gym tomorrow. With my Doc's approval of course. Since I met with him yesterday and had him answer all my questions I have found my mind is letting go of the fears and worry I had this time last week. I know this isnot something I'm going to be able to not think about again, but I am moving forward with living Life. I even got a promotion while I have been out of the office! 

AnnissaP's picture
AnnissaP
Posts: 632
Joined: Sep 2017

Congratulations on the promotion. The dr said 4 to 7 days down time, but I def see it being longer to get back to where I am now. I am a bartender at a super busy place and I just do not know when I will be able to go back and be 100%.

foroughsh's picture
foroughsh
Posts: 779
Joined: Oct 2014

I agree with your family doctor. Find a urologist with kidney cancer experience.  Renal cell carcinoma does not need biopsy it needs to be taken out of patient's body.

AnnissaP's picture
AnnissaP
Posts: 632
Joined: Sep 2017

Did anyone who had or has rcc have extreme fatigue??? I mean to the point where all you do is sleep or want to sleep? I am usually very energetic and it is all I can do to get up and go to work!!! I have been this way for about 3 mths now. My body just will NOT do what I want it to.

Wehavenotimeatall
Posts: 489
Joined: Aug 2017

Yes  my fatigue on a 4cm mass was constant  and hard to deal with

Although I carried on  working until three days before the surgery The last week  was very hard

The fatigue was one of the signs I knew something was wrong. I am not the fittest person in the world. But  I knew this was not good

i hope it will be fixed  when my body recovers from the surgery 

 

icemantoo's picture
icemantoo
Posts: 3282
Joined: Jan 2010

Annissa,

It took me 11 months until I waterskied again for my 60th\h birthday. I  was exhausted. The doctor who told you 7 days downtime has never been nephed.

 

Icemantoo

AnnissaP's picture
AnnissaP
Posts: 632
Joined: Sep 2017

I walked away from the appt realizing it was def going to take longer!! They are cutting out part of your kidney!!!!!! Thanks for the info.

Angie1496's picture
Angie1496
Posts: 154
Joined: Sep 2017

I went shopping today and purposely didn't do my norm with my sisters and I'm still exhausted.  I'm used to 15,000 steps a day and today I'm at 4,200. The most since my neph and I'm pooped!  

AnnissaP's picture
AnnissaP
Posts: 632
Joined: Sep 2017

Oh wow. Ok!!

AnnissaP's picture
AnnissaP
Posts: 632
Joined: Sep 2017

Question!!! Did anyone have their tumor grow while waiting for surgery???

Angie1496's picture
Angie1496
Posts: 154
Joined: Sep 2017

Annissa,  My tumor was actually slightly smaller than the second CT i had indcated.  However I was only 5 weeks from finding the tumor until it was removed.  I have a friends who's daughter had surgery in march and hers  was being monitored for 6 months prior to surgery but it grew during that 6 months so they removed it with 40% of her kidney.  It was also RCC.  She is 24! and it wasn't genetic in her case. RCC is supposed to be slow growing so I am not sure how long you would have to wait to see a significant change.  I think in my reading there is a type of RCC that is faster growing but its also rarer.  Clear Cell is the most common type of RCC. 

Pages

Subscribe to Comments for "Totally Confused!!!"