Scared & Worried! :(

Amy,

That is enough to scare and worry anyone. It sure scared and worried me 12 years ago. At 1 and 1/2 inches the mass is about 4cm and the fancy words mean it is growing on the outside of the Kidney. Make sure that the Urologit you are being referred to specializes in Kidney Cancer (usually one of the younger ones).

If it is diagnosed as Kidney Cancer they will probably want to do a Nephrectomy or partial Nephrectomy. Not what you wanted to here.

The good news is that at 4cm even if Cancer his prognosis for a full recovery from the surgery alone and normal life are excellent.

Keep us posted. From what you tell us so far your husband will be fine.

Icemantoo

HI Amy.. and welcome..!  You are doing the right things.. your hubby is lucky you are so involved..!  The good news is that the growth is small.  The other good news, is that the blood in the Urine can easily be caused by that pesky stone.  The blood in the Urine is not in itself a worry, just a symptom that something is not right.

You mention CT Scans, I hope they did a full scan of the chest, abdomin and pelvis.  I would expect those other areas to be clean, but worth checking now.  The Creatinine is a tad high, but not terrible, but may be too high to use dye (Contrast) with the scans.  Did he have an IV when the scans were taken..? OK, see the Urologist, see what he or she says.  And perhaps you may wish to do a search for a good Surgeon that specializes in Urologic surgery.  You did not mention where you are, often someone here can give a suggestion on a doctor.

The waiting to KNOW can be difficult.. feel free to holler at us any time.. We all have been through it, either as a patient or a caregiver..

Ron

kajunnana said:

Thank you!

Thank you! I will keep everyone posted!

Amy

Hi Amy,

So sorry to hear about what you are going through. But you have to a great place for knowledge and support. We are here for you!!

We have all been there....either first hand, or as a caregiver. Good news is it sounds like your hubby is quite treatable. Try to breathe. They may have to remove the kidney...but that often resolves the situation. They keep a close eye on your hubby after that.

Hang in there!

Hugs

Jojo

Wow, Amy! It just seems to be coming at you!! You come on here and talk all you need to talk!! I can imagine that sometimes you feel like the world is weighing heavy on you. And you probably have so many thoughts and fears - but don't want to dump on your hubby as he is also dealing with his own fears.

Enjoy your beach vacation! I work for a school board too! I am off until August 18th....thank goodness!

Hugs!

Jojo

kajunnana said:

Thanks

Thank you for all your encouraging words. It's great to know that I will have somone to talk to if needed. And I'm sure next week I may need a good talk! It's funny I have tried to prepare myself for the worst (cancer, even though I know it is VERY curable) but yet I am so darn scared! It's like my world has turned upside down again (for the 3rd) time! You see we have one of our daughters (age 14) that was diagnosed at age 7 (after 2 years of testing) with JRA. Next I was in an bus accident in 2011 & I had 1 back surgery and may need another one in my thoracic area. Then we have 1 of our granddaughters (age 5) that was just diagnosed with Hydrocephalus and is fixing to go through brain surgery to have a shunt placed in her brain. I guess I'm sounding like I'm feeling sorry for myself, but I sometimes can't help it! I am just so exhausted both physcial & mentally and sometimes don't know which way to turn!?!?! But thank God I have off durning the summer months from my job (I work for a school board) so I can at least help my daughter, granddaughter, and now Kenneth. And we are going on a little vacation next week & will come back home for Kenneth's doctor's appointment then go back to the beach! Hopefully this will help both me & Kenneth to keep our minds busy!

Oh we live in Cajun heart of Louisiana- Breaux Bridge! (LOL)

Again thank you all! I will keep everyone posted!

Wow, Amy, you've been through such trials..enough!!

I agree with the others, you'll get through this alone side your hubby. He is so lucky to have you advocating for him. Does he read the posts here?

I know when I got my diagnosis, coming here prepared me so well, I never was scared at all. I just didn't like the cost of tests, surgeries etc. Honest.

Also this was my 2nd robotic, laproscopic surgery and it was not difficult for me at all. I did have the dreaded trapped gas in my shoulder which did cause some pain for a few days, but that was it. I also used a lumbar wrap after surgery and for a few weeks to support the sore abdomen. I put dry ice inside this wrap as it seemed to help with the soreness resulting in less pain meds and eventually none were needed. Now this is MY experience.

Has your hubby ever had any surgery?

Keep asking questions, and bring us your concerns. We'll walk this journey alongside you ok hon?

Warm hugs, Jan

kajunnana said:

Jojo61 I do the imaging data

Jojo61 I do the imaging data for the school board. I was a bus driver before the accident it was a big change but I love my new position even though I miss all my kids from the bus.

Wow, you’ve been through so much. I’m glad you have a vacation coming up to take your minds off things for a while; you certainly deserve it. It’s very scary hearing the word “cancer” or to even think of the word, so no wonder you’re feeling the way you do. But even if worse comes to worst and it is cancer they caught it early so it’s a good thing for those kidney stones. Otherwise he wouldn’t have had the CT scan and it probably would not have been found until it was much bigger. He’s lucky he has you and just hang in there. The surgery is not terrible; my fears of it were worse than the reality. Make sure you find someone who has experience with kidney cancer and surgery! Best of everything to you and your family.

aamdsi said:

On the way to being better

Looking back, I think the terror of hearing the words "Cancer" and "kidney surgery" were far worse than the actual surgery and recovery.  At least on this side of it all you know that you are on the "good side" of it all.

Your Dad is a lucky man having you around!  Hang in there.  It does get better 8-)  Strange to think the stones as a "blessing" but they were/are.

 

Hugs

Kajunnana,

I too am new to this forum and I wanted to let you know I also went through a similar discovery of pain, multiple trips to the ER and CT scans that didn't pick up the mass right away.  I visited the ER 3 times in the same week and had a CT scan, no contrast that didnt show anything, then another CT scan night of 3rd trip to ER in a week that showed a 4 CM mass.  Mine also was on a Friday so the weekend was troubling, concerning, and filled with sad thoughts, etc. 

I want you to know that you came to the right place, so many good folks on this site that can help you with advice, information and supportive encouragement. 

You hang in there and focus on the positives and take to heart that I and I am sure many others will be praying for you and your family!

All the best!

Tom

kajunnana said:

Thanks

Thank you for all your encouraging words. It's great to know that I will have somone to talk to if needed. And I'm sure next week I may need a good talk! It's funny I have tried to prepare myself for the worst (cancer, even though I know it is VERY curable) but yet I am so darn scared! It's like my world has turned upside down again (for the 3rd) time! You see we have one of our daughters (age 14) that was diagnosed at age 7 (after 2 years of testing) with JRA. Next I was in an bus accident in 2011 & I had 1 back surgery and may need another one in my thoracic area. Then we have 1 of our granddaughters (age 5) that was just diagnosed with Hydrocephalus and is fixing to go through brain surgery to have a shunt placed in her brain. I guess I'm sounding like I'm feeling sorry for myself, but I sometimes can't help it! I am just so exhausted both physcial & mentally and sometimes don't know which way to turn!?!?! But thank God I have off durning the summer months from my job (I work for a school board) so I can at least help my daughter, granddaughter, and now Kenneth. And we are going on a little vacation next week & will come back home for Kenneth's doctor's appointment then go back to the beach! Hopefully this will help both me & Kenneth to keep our minds busy!

Oh we live in Cajun heart of Louisiana- Breaux Bridge! (LOL)

Again thank you all! I will keep everyone posted!

I too went to the ER with pain in my left kidney which they think were small kidney stones and ended up having a mass on my right kidney.  I was scared to death the doctor told me it was cancer and cried once I got to the van.  My doctor made me feel at ease and confident it would be ok.  I had robotic surgery for a partial nephrectomy on a Monday, went home on Wednesday and went to a concert at Seaworld on Sunday.  Just remember everyone here heard the C word and we are still here talking to you.

I also have 2 daughters with spina bifida that have hydrocephalus and are shunted.  Oldest daughter's shunt is 24 years old.  Youngest daughter is 16 and had 3 revisions and placement change in one week due to meningitis 3 years ago.  One thinng that might help you and your daughter to know is that there are only a few nerve endings on the head and my daughter says it doesn't hurt having the shunt placed.

kajunnana said:

Well today Kenneth did not

Well today Kenneth did not look to good, you could just see that he wasn't feeling well & something was hurting. He would not go lay down he has to keep busy! In his own words, "I have to keep busy if not my mind keeps running" it breaks my heart to see him like this. But he finally told me that his shoulder was really hurting, and asked for 1 of his pain meds.  He must have been really hurting to take one because he does NOT like to take them!

Finally he went to bed tonight around 9:30 and he has been sleeping pretty good for the last hour & 1/2.

But on the bright side Kenneth is finally talking to me more about the "what if's" and I keep telling him don't woory about anything I have & will take care of everything. I just hope I can keep that promise!!

that as bad as this is, you (Ken), is doing the very best thing for himself and family. Look forward to dealing with this. Keep an upper hand. I am so convinced that we can live through anything the doctors have to do to us. So go get it, heal, live and love. Should anything else happen, your experience makes anything else just a speed bump.

When I ended up in the ER for similar pain and hematurea, I also hit 2 different ERs'. I had to go back to the first one and insist on being admitted for pain control. They did my surgery 2 days later. So,..if his pain continues, maybe you can get his operation moved up sooner. Worked for me.