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Stage 1 CCRCC Grade 2 recurrence or treatment questions

Babygirl05's picture
Babygirl05
Posts: 42
Joined: Oct 2017

I was diagnosed this summer with ccrcc and of course have a harder time dealing with the mental effects of it than the physical ones so far.  My urologist gave me the all clear and said he got it all and didn't recommend any follow up treatment or anything other than every 6 month scans.  I know this is the normal protocol for stage 1, but would I be crazy to ask him for a 3 month scan first anyways?  Just to ease my mind? 

My tumor was small and located inside a cyst that was inside my left kidney.  I had a partial nepherectomy with an open surgery.  I know its good that the tumor was contained to my tumor, however my fear comes from a procedure I had a couple months before diagnosis.  I went to a urology dr who sent me to a radiology dr, to treat me for a painful complex "cyst" that had grown to 7 cm.  Both doctors assured me that it was JUST a cyst and not cancer.  The radiology dr was positive about it, and recommended to drain the cyst if it was bothering me.  I reluctantly agreed.  I even asked him..."what if it is cancer...and you puncture the cyst and kidney spreading cancer cells?"  He assured me again it was just a cyst and drained it anyways.  Symptoms got worse and I ended up at a new doctor who diagnosed me and found the rcc. 

 

Rockspin
Posts: 77
Joined: Aug 2017

I can understand your fear. My tumor was 2.5 cm and I was told they got it all and it hadn't spread but I still insisted on a three month scan which I'm getting the end of this month. My surgeon did say some renal cell cancers spread within the first two years. 

icemantoo's picture
icemantoo
Posts: 3326
Joined: Jan 2010

Follow up is dictated by protocols in place subject to modifications based upon the physicians subjective inoput, pathology, insurance coverage  and your input as well. These things change over a period of time and are not uniform. Too many scans raise other risks. Good luck for a smooth and unevenful transition to hopefully negative scans from here on out.

 

 

Icemantoo

Babygirl05's picture
Babygirl05
Posts: 42
Joined: Oct 2017

Thank you.  I am having a real hard time with the anxiety and depression part of recovery.  I'm doing better right now, but I'm also taking medicine for it which helps.  I want to get off the meds and try to handle the fear on my own.

Bryn1108's picture
Bryn1108
Posts: 94
Joined: Jul 2017

I still have to calm myself down every time I have any pain, thinking I have cancer again.  My tumor was 9cm, left kidney.   Please know we are all here for you.  Icemantoo,  what could happen with to many scans?  Thanks,  Big hugs 

donna_lee's picture
donna_lee
Posts: 1001
Joined: Feb 2009

there are variables.  But from where I sit, a very small contained tumor, partial neph. and a 6 mo. interval sounds about right.

You could ask for a 3 mo. follow up, but don't be surprised if your Dr. persuades you to wait.  I received the, "we think we got it all." comment, too.  (Stage IV with mets to several places).  It wasn't until the 9mo and 12 mo. tests that a single note was found to be enlarging and biopsied positive for RCC.

Click my user name for the full story.

And Best Whishes and Hugs.

donna_lee

lobbyist0724's picture
lobbyist0724
Posts: 446
Joined: Sep 2016

Hi babygirl, I also had a cystic tumor with solid component. There have been more researchese on these types of tumors recently. All suggested cystic RCC (not the one that is formed by the necrosis) has better prognosis then solid one and is more indolent as well. Also, it seems that the bigger the cystic portion, the better it will be. Hope this can ease your mind a bit!

Jan4you's picture
Jan4you
Posts: 1327
Joined: Oct 2013

Well I can appreciate how much you are anxious after your initial experience. I was told by my surgeon/urologist that he does a lab test that shows him a marker which would indicate if cancer cells are there. You can discuss this with him and see if he'll check you at 3 months. Or he may do the chest xray along with this test anyway. 

Remember, the one thing we CAN control is our outlook and attitude toward our recovery.

Our bodies respond to our thinking. Count your blessings and rejoice that the "c" went with the surgery! Then get on with your life and make wonderful memories!

Sending you, CALM, HOPE and SERENITY! Again, we'll be here for you all the way!

Hugs, Jan

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

Totally understandable. If it were me I would ask for an earlier scan just to ease my mind. If they disagree maybe you could find someone to talk to about it?? Maybe you can make an appt with someone well-versed in all of this that could give you some peace of mind. You were strong enough to make it this far.....keep your head up!!!

hardo718's picture
hardo718
Posts: 853
Joined: Jan 2016

Personally speaking, the thoughts circling in your head are completely normal at this point.  If you didn't have fears after that experience I'd say you were sticking your head in the sand.  It's a lot to digest, and it's a process.  I think it's much like experiencing a death of a loved one and the stages that we go thru with that before we reach the phase of acceptance and get on with living life again.  Sorry to be so morose, just my opinion maybe.  Be patient with yourself.  I read an article about 2 years after my surgery that gave me some comfort.  It said that it wasn't unusual for cancer survivors to have a heightened fear around the anniversary date of the finding.  So beware.  My comfort in reading that came from the fact that I now had confirmation that I wasn't alone in my thinking.  When all else fails, ask your doctor for more frequent testing if that's what you need and if there's disagreement then ask why and get a conversation started for better understanding.

You are not alone here.

Don't forget to keep in mind that we all need to celebrate life to the fullest and be thankful for every day we've been blessed with, this side of the dirt!  lol

Be well, I'll keep you in my prayers,

Donna~

Donna~

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

scan is not a bad idea if Dr agrees. I requested my husband be scanned this Dec after his nephrectomy in Sept. Dr didn't mind, he made a comment about going to a year if the Dec one comes out ok. However I am requesting one for 6 months later, due to changes in his insurance next year. I hope he goes along. Do not be afraid to push for what you want, your life just may depend on your gut feelings! Best of luck to you!

Dutch1's picture
Dutch1
Posts: 152
Joined: Mar 2014

Knowing what I know now (after 4 and a half years living with cancer), I would go with the 6 month scan.  If that really scares you, try for the 3.  Try to focus on the fact that you have been blessed.  That's a funny thing to tell you at this point in time.  But, the fact is that your cancer was found early.  You are at stage 1.  If you're going to have kidney cancer, you're in the best possible place.  I think that you will learn to appreciate the early detection experience as time goes by.  If you have trust in your doctor, try to buy into his or her recommendations on matters such as scanning frequency.  I get scanned quarterly.  I would rather that my scans were less frequent, but there's not much I can do about that.  The risks of less frequent scans outweigh the problems created by going with quarterlies.  You can go for 3 months now, but try to spread them out more as you get more comfortable with your situation.  You should do well, although you have been changed by the cancer experience.  

Best wishes as to your success.

Dutch

Babygirl05's picture
Babygirl05
Posts: 42
Joined: Oct 2017

Wow, so many nice messages!  Thank you all so very much!  I have always had to deal with anxiety and depression, but nothing at this level.  I'm controlling it with medication right now but hoping to wean off of those soon.  Since I'm feeling much better and healed now, I have started exercising and walking again.  I did that before getting sick and it was always an outlet for stress for me.  It feels good to be back into a normal activity like that.  I'm taking it slow, have my fitbit set to get 7,000 steps a day, and I feel great.  I get tired sometimes but thats not that bad. 

I have been trying to drink more water now, and I am using the bathroom ALOT more than I used to.  I actually wake up 3-4 times a night to pee.  Is that normal?  Or should I be concerned?  I drink about 48 ounces of water a day, sometimes more.  But even if I just sip water at night, I'm still up several times.  I'm going to mention this to my doctor just so he can ease my mind if anything. 

Also, I have been having this off and on "burning" pain on my surgery side.  Its not near my incision, its around front to the left of my belly button and down a little.  Is this normal?  Its not constant, but enough to bother me when it does hurt. 

Allochka's picture
Allochka
Posts: 946
Joined: Nov 2014

Stage 1 grade 2 recurrence is very improbable. You could ask for 3 months scans of course, but is it worth it?

you've mentioned that you've always had anxiety problem. No wonder it has intensified after cancer diagnosis... I've never had generalized anxiety. But I did get health anxiety several years ago, so I can relate a bit. To me, succumbing to uour urgency to get constant reassuranc won't help ease your anxiety. It will just make it worse longterm. For stage 1 follow ups at 6 months are absolutely enough, because risk is really low. You must have follow up of corse, but 3 months is a bit too much. You will be experiencing severe anxiety prior to every scan. Do uou really need it in your life?

And about going to bathroom - stress can cause this. Sometimes when I'm stressed I can visit bathroom almost every 30 minutes. And you are definitely stressed at the moment. Pleas consider some therapy or medication. You had a fight with cancer and hav won it. You have a second chance to enjoy life, and not to live miserably, afraid of every cough.

As a hypochondriac, I know what I am talking about. I have started therapy in summer and already feel so much better! 

Good luck to you, please live in joy, not in fear!

Babygirl05's picture
Babygirl05
Posts: 42
Joined: Oct 2017

Allochka, thank you so very much for your advice.  I emailed my doctor and asked if I could have a 3 month scan for the first follow up, and then continue with 6 month scans after that.  Just so I can have some piece of mind for now, since its the first scan after surgery.  What makes me so paranoid, is that my tumor was contained inside a cystic mass inside my kidney.  I allowed another doctor to talk me into "draining it" and he informed me it was perfectly safe because "i didn't have cancer.  just a cyst".  So now I fear that by having him puncture and drain the cyst, he allowed cancer cells to leave the kidney and possibly spread to other places. 

As far as therapy and medication.  I do have an amazing support system at home, and I also belong to an online support group that really helps.  I am currently taking 3 different medications to help control my anxiety and depression.  I actually have a dr appt tomorrow with my general practioner to go over my medications and make sure they are still working. 

I am trying very hard to enjoy life through faith and not fear.  My spiritual relationship with God has been a huge help to me. 

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