Scared & Worried! :(

kajunnana said:

Well today marks the day of

Well today marks the day of our new journey! I say "our" because Kenneth will not have to fight this alone!!! Today we went to the urologist and he told us that he is 99% sure that it is RCC. He was a little upset that the ER did not do the second CT with contrast dye so we are going to do a CT/PET Monday morning early!! He wants to just make sure it is just in Kenneths left kidney. So as I said today marks a new beginning! 

Kajunnana,

You have had so much to deal with, I have no doubt you had times when you have felt you can't take much more. It is in these moments we discover a deep rooted strength and determination to fight and protect, I know yours is being tested to the hilt but you are proving yourself to be one tough lady!

Angec is right, cancer is not something we want to deal with, and there is a chance you are not. The main thing is that whatever it turns out to be it has been caught very early. If it is cancer it is still very small and fortunately in an easy area when it comes to surgical removal. After the next scan things should start to proceed quickly, and then in no time at all Kenneth will be on the road to recovery. I hope all goes well on Monday, I am keeping you in my thoughts and prayers!

By the way I was just curious about Kenneth's kidney stone, is it from too much uric acid or calcium? Here in France if they are due to uric acid they are easily treated with Vichy water. My husband had several including one very large stone which caused a lot of pain. He has been drinking the mineral water every day and the stones have dissolved to next to nothing now. Just thought I would add that!

You both take care, you will get through this:)

Djinnie x

kajunnana said:

Hello everyone.
Well me made

Hello everyone.

Well me made it back from our vacation which was not the best. I tried to keep Kenneths mind off of everything but it did not work, which I understand because it was hard for me to do the same.

So things are starting to move a little fast now! Kenneth did another CT w/wo contrast Monday, we had to go to the dr yesterday and we scheduled surgery for Aug 27. Thats the only thing we don't like but it's okay because we can get everything in line & ready!

I had more questions for the dr which he did not mind at all answering! And like the dr said if the tumor was found next year then we would've had a lot more problems. He did tell me it is a stage 1 (which I think is good, if that makes since) so now we just have to wait but the 27 of August will be her before we know it! 

Sorry that the vacation was not great. But yes stage 1 is very good. The waiting is the hardest part. However this verifies that the tumor is small and there is no reason to rush. Ron

dhs1963 said:

When the Dr's rush is when you get scared

There are times when the Doctors see something, and say we have to deal with this now...if you have a kidney mass, and they drop everything to put you at the front of the line, that is when to get worried.  

DHS, said it better than I did, thanks..  

Yes, in my case there was a need to get it done ASAP.  But all the surgical room time was booked for a few weeks...  My surgeon said "do not worry.. we are a teaching hospital, and we teach every kind of surgery.. we will just bump someone getting cosmetic surgery, your's is more important.."  A couple of days later I had a date and time..

Ron

Caregiver_in_GA said:

Never stop questioning

Amy,

My husbands story started much the same way.  A random kidney stone in the left kidney showed a mass in the right kidney during an xray.  Several weeks later they determined an 11cm tumor in the right kidney needed to be removed.  Pathology confirmed cancer but they assured us it was stage 1 and all he had to do was come for his 6mos checkups to monitor for problems for the next 3 years.

That was 2012.  In January this year it was determined that the kidney cancer has spread to his lungs, lung lining and chest wall.  He is now stage 4 and Interluken treatments did not cure him.  My post-surgery research leads me to believe that the size of the tumor they removed would have put him at stage 2 in 2012 which would have made him eligible for treatment such as chemo as a preventative measure.  I can't help ask the question that if they had staged him correctly we may not be where we are now.  I am kicking myself for not asking more questions when he was first diagnosed and for not insisting on a PET scan when we heard how big the tumor was.  He is currently on a Votrient regiment which is not pleasant and we go for our first PET scan next week to determine if the drug is working or not.

Knowledge is power and no question is stupid.  Ask EVERYTHING.  Question EVERYTHING.  And if you don't like what you are hearing get a 2nd and 3rd opinion until you feel comfortable with the people you are working with and the information you are getting.  Our 1st oncologist who removed his kidney was our 2nd opinion and I liked him - but in hindsight he was very dismissive after surgery was done and overly confident that we were done and everything was ok.  Didn't want to take the time to listen to my concerns or even my husbands.  If it is cancer and you get over the initial shock I find having as much information as possible really helps me as a caregiver.  My husband needs to focus on getting well and dealing with the physical effects of the disease.  I see my job as handling everything else he's just not up to such as scheduling, question asking, research, and dealing with the insurance companies and billing issues.  I won't BS you - it's a full time job - and I've had more than one moment where I'm ready to run my head into a paper shredder in frustration and fear.  Surround you and your husband with a good support network and don't be afraid to ask for help.  It makes a world of difference.

You are in my prayers.  Good luck to you both.

Hi C in Ga...  At 11 CM, that is Stage 3.  But there is no adjuvant (preventative) drugs that are effective for RCC at this point.  You did not mention if it was Clear Cell or not, but CC is the most common.  

So the only thing of concern is the level of follow up.  From what you are saying, he is not in the hands of an experienced enough RCC Oncologist... which means if it were me, I would find one and get an appointment for a second opinion, ASAP.

Good Luck..

Ron

foxhd said:

pain

I went from no signs or symptoms to hospital admission thru the ER. Because the pain became unmanagable at home. I believe I needed IV dilauded for pain control. I never had any pain what so ever until then. Hours earlier I was weight training and running like always. Let him know that now is no time to to deal with pain that isn't going to pass until he recovers from surgery. I remember how much it hurt.

Amy,

The pain may or may not be related to the tumor. Make  sure yo bring it up at your appointment Friday. Nobody said this will be easy, but with a small tumor your prognosis for a full recovery from the surgery alone is excellant.

Icemantoo

kajunnana said:

Hello everyone its been

Hello everyone its been awhile since I wrote. Things feel like they are dragging! We go this Friday for pre-op, and the 27th we go in to do surgery! (I say we because it's not just Kenneth that has the cancer) But I do have a question the past week Kenneth has really been hurting on the left side where the tumor is,  has anyone have this happen before I am worried the the tumor may be growing!?!?!  The pain is so bad that he is starting to take his pain killers & that is not him Kenneth does not like to take any kind of medicines. I'm just so worried!

The pain might be from the tumor, but it's really pretty doubtful. Usually pain with this type of tumor happens when you have active bleeding and some blood clots are passing through the ureter. That can be as painful as a kidney stone passing. I was passing blood clots like that, and it was painful.

These tumors grow really slow. It's doubtful it could grow fast enough to start causing really intense pain.

That's not to say the pain isn't caused from the tumor, but I think your fear about the tumor growing fast and causing the pain is unlikely. Masses tend to grow at rates of 0.1 to 0.8 cm per year (I got this off a website from the director of urology at UCI medical school), so that's less than 1/3" per year even on the fast growing side, which is really, really small month-to-month.

Todd

kajunnana said:

Well our luck just keeps on

Well our luck just keeps on the BAD track! Kenneth had to do an ultrasound Tuesday of the bladder and kidneys. I get a call from the nurse yesterday telling me that Kenneth needs to go in because something is wrong with his bladder!!! My heart just sank! Then she told me that a spot showed up in his mid left lung an x-rays. So long story short I brought Kenneth in today to do a procedure and the doctor confirmed that he also has bladder cancer. But a good thing is that the doctor thinks that he will be able to remove the cancer from the bladder then the kidney (Wednesday). Next we have to see about the spot on the lung!!! 

I think I'm about to loss my mind!!! I feel so helpless!

So sorry to hear your bad news about your hubby. It is good they are making plans to remove the cancer and glad they found it now. You are not going crazy, it is totally normal to worry about those we love. Your husband is very lucky to have you.

Hope you are getting some support during this stressful time and that people are rallying around you. Go to talk to a counsellor if you can get the time. Talking to someone helps even when you are so overwhelmed you think you can't say much. I have found this helpful. I get really stressed and my hubby is NED at present! He did end up in the emergency department 2 days ago with unexplained chest pains so I understand being worried! I will be praying for you.

Hugs Melissa