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Scared & Worried! :(

kajunnana's picture
kajunnana
Posts: 17
Joined: Jul 2014

Hello everyone. Hope all is doing well. I'm going to try and keep my story short. It all started June 16, 2014 when my husband started having pains that folded him over! I brought him to our local ER they did a CT, & bloodwork and saw a kidney stone (2mm) in the right kidney gave him IV fluids pain meds & told us he should not have any problems passing it & return if needed. Well that was a Monday on Wednesday we were back at the local ER, again they gave IV fluids & pain meds, but this time they also gave him morphine, perocet, & lacics. But they could not do a CT because the CT machine was down! So they did an xray and of couse they did not see it! They ER doctor told us if it got to bad to go to another ER which is only 20 mintues away. So Friday night we were back at the ER. This time they did another CT and of course bloodwork & urine sample. And when that ER doctor came in he told my husband that it (the stone) did move a little but you have a mass on your left kidney!!! I liked to lost it, but I kept as calm as I could!! He gave us a name of an urologist and told me to call first thing Monday morning! So we had a HORRIBLE weekend both of our minds running and worrying! So come Monday morning as I was waiting for 9am to get here my phone rings and its our family doctor, she was so upset she was reading my husbands reports and saw that on the Monday when they did the CT there was the mass which is about 1 1/2" it is exophytic mass extending from the lower left pole circumscribed isodense mass involving the inferior aspect and never told us anything, but I told her that we knew because of the ER on Friday. I asked her to please tell me what she thought & she told me that it don't look good! and that she was doing the referral right then a there! So he has an appointment July 15! Its like it will never get here! So I went and got all of his reports & CT's from both ER's and I'm looking through them and looking at the CT scans & praying that nothing is there (as crazy as that sounds) but there it is! As plain as the nose on my face! On the lower left pole of the kidney!! And then I was looking at his blood work... On the Monday - BUN 23.0 mg, A/G ratio 1.0, WBC 12.7 x 10, RBC 4.54 x10, Hgb 13.2gm, Hct 40.1%, MCHC, 32.9 gm, MPV 7.2FL, & there was a trace of blood in his urine. And then on the Friday his WBC in his urine was 5 HPF, RBC in urine 127 HPF, and there was blood a 3+, and his blood work Bun 34.0mg, Creatinine 1.47 mg.

So I have thought the worst & prayed for the best, but what do y'all think? We have prepared ourselves that it is the big "C", and we have explained to our children what was going on and the possibilities if it is not cancer & if it is! I'm just so worried if that makes any since because I said that I have try to prepare for the news (bad).

So if anyone has any suggestions please let me know! 

Thanks

Amy 

icemantoo's picture
icemantoo
Posts: 3313
Joined: Jan 2010

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

cheatinlil's picture
cheatinlil
Posts: 202
Joined: Jun 2014
kajunnana Big Hugs to you! sorry you are here.  Keep us posted.  I'm new too so I don't have much to share.  You can read my About Me.
GSRon's picture
GSRon
Posts: 1304
Joined: Jan 2013

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's picture
kajunnana
Posts: 17
Joined: Jul 2014

Thank you! I will keep everyone posted!

Amy

Jojo61's picture
Jojo61
Posts: 1310
Joined: Oct 2013

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

kajunnana's picture
kajunnana
Posts: 17
Joined: Jul 2014

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!Cry 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!

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

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's picture
kajunnana
Posts: 17
Joined: Jul 2014

Jan4you,

Kenneth has had 2 surgeries in the past 3 years! That is what I don't understand, how did they not catch this mass before now. He had shoulder sugery in Aug. 2011 then gallbladder surgery Aug. 2012! I have read that it usually grows 1/2 per year?

Kenneth has read any of the post, we do talk about the what if's.... I feel that this is my "way out" if that makes any since? I do talk to family members and they try to understand but it's not the same as talking to you all that knows exactly what we are going through!

Amy 

cjhawk38's picture
cjhawk38
Posts: 44
Joined: Dec 2013

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.

Jojo61's picture
Jojo61
Posts: 1310
Joined: Oct 2013

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's picture
kajunnana
Posts: 17
Joined: Jul 2014

Thanks Jojo61! What school board you work for? If you don't mind me asking.

Jojo61's picture
Jojo61
Posts: 1310
Joined: Oct 2013

Hi Amy,

I don't mind you asking! I live in Canada...Waterloo Board. I am a secretary of a very busy and needy school. Incredibly busy, and trying but very rewarding.

What type of work do you do? (if you don't mind me asking :)

 

 

kajunnana's picture
kajunnana
Posts: 17
Joined: Jul 2014

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.

APny's picture
APny
Posts: 1994
Joined: Mar 2014

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
Posts: 284
Joined: Apr 2014

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

Tbuck1971's picture
Tbuck1971
Posts: 50
Joined: Jun 2014

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

aamdsi
Posts: 284
Joined: Apr 2014

I meant to say your husband is very lucky. I was just talking to my Dad before I came to the site this morning.

kajunnana's picture
kajunnana
Posts: 17
Joined: Jul 2014

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. Frown 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!!Undecided

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

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.

angec's picture
angec
Posts: 924
Joined: Mar 2012

Sorry for all that you are going through. But you are enduring very well! You keep up that fighting spirit because that will get you through.  Did you have a copy of ct report on you? Did you say the mass was 1 1/2 inches or cm? Because usually the reports give you the size in MM or CM.  Do you have a clarifiation on that?  And I have to tell  you, there have been many cases on here where it turned out NOT to be cancer.  The possibility is there but it can go either way. Try not to worry about anything until you are sure what it is.  And there are many things out there now to treat RCC if it turns out to be so. This is not a death sentence. Is there any possibility that he has a kidney infection due to the stone that he has?  I have seen that also.  Someone had a stone in one kidney and had an infection in both kidneys.  Did they give him antibiotics by any chance?  Did the stone pass yet? A 2 mm stone should be able to pass easily. Drink lots of water and squeeze a lemon into it. Also good for kidney stones is a product that i ordered and use frequently. It is called Kidney Complete. You can do a search for it. When you have pain you take it and it helps the pain and melts the stone. Works fast too.  Hopefully it will be nothing, but if it is the C word and it is small, than more than likely a partial is possible and he will be done.  Praying it goes your way!  

PS.. i just read rangerk's post.  You see what i mean about maybe it is not cancer? He had two tumors on the kidney and two on glad and they are not cancer.  ;)

kajunnana's picture
kajunnana
Posts: 17
Joined: Jul 2014

angec

I did get a copy of the reports & the CT's, on the report it has that it is 2.7cm the doctor told me that it was about 1 1/2" solid mass growing on the outside of the left kidney. The stone is in the right kidney. They did urine test to see if there was a infection and there was none. The 1st time to the ER they did give him antibiotics just in case, he still has not passed the stone!

Thanks for the prayers!

Melliebean's picture
Melliebean
Posts: 53
Joined: Jun 2014

Hang in there. I am realitivly new here as well. I have a tumor on my right kidney and I am waiting on surgery August 11th.  I hope your husband finds out it isn't cancer but if it is we just have to follow the steps and know everything is going to turn out fine. best wishes to your husband. I know what you all are going through. As far as them not seeing it in 2012 and the growth rate. I didn't have mine on a ct scan I had the end of 2012 either. Hang in there.

kajunnana's picture
kajunnana
Posts: 17
Joined: Jul 2014

Melliebean

Your & your family are in my prayers! I hope you will have a fast recovery after your surgery, please keep us posted!

kajunnana's picture
kajunnana
Posts: 17
Joined: Jul 2014

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! 

angec's picture
angec
Posts: 924
Joined: Mar 2012

That is very small and can be curable with surgery. What is more, if it is outside of the kidney there is a good chance that they won't have to remove the kidney.  And, as for as the 99% sure it is rcc, i am 99% sure he cannot be 99% sure.  It may be, but no one knows until the surgery is done. With that said, we shall see. But if it is rcc, then the chances are very good that at that size it is curable.  Please let us know how it goes from here. We will be praying for you!!

Djinnie's picture
Djinnie
Posts: 945
Joined: Apr 2013

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's picture
kajunnana
Posts: 17
Joined: Jul 2014

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! 

GSRon's picture
GSRon
Posts: 1304
Joined: Jan 2013

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's picture
dhs1963
Posts: 513
Joined: May 2012

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.  

GSRon's picture
GSRon
Posts: 1304
Joined: Jan 2013

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
Posts: 1
Joined: Jul 2014

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.

GSRon's picture
GSRon
Posts: 1304
Joined: Jan 2013

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

todd121's picture
todd121
Posts: 1449
Joined: Dec 2012

I've seen this said a couple of times about size and staging, and it's not accurate. Forgive me, but I think we just have to be really accurate about this. The stages are very well defined.

Stage 3 refers not to size, but whether the cancer has exited the kidney either outside the kidney, but usually/often by invading veins or arteries inside the kidney. If it has, but is only 1 tumor in the kidney, it's stage 3. If it has not (the tumor is 1 tumor, fully contained but has not grown outside the kidney either outside the kidney proper, or into the veins or arteries in the kidney) then it's divided by size. Stage 1 if the tumor is < 7 cm. Stage 2 if the tumor >= 7 cm.

Quite often the really large tumors have grown into the veins, so a tumor as large as 11 cm is quite often Stage 3, but not necessarily. And small tumors can be Stage 3, depending on their location.

My tumor was 6.8 cm, but Stage 3 because it had grown into some of the tiny veins. That's why I paid such close attention to this criteria. At first I was diagnosed Stage 1, but when the pathology came back I was Stage 3 and it was not because my tumor was larger, but because they found it inside some of the tiny veins.

An 11 cm tumor is definitely NOT stage 1. It's at least stage 2. He might have been eligible for adjuvant therapy drug trials, but none have been proven to be effective so it's doubtful it would have helped.

Stage and Grade are important for prognosis and follow-up care.

Todd

Ree_Maryland's picture
Ree_Maryland
Posts: 161
Joined: May 2014

I had partial lap done on April 21st . the path said it was a 1b sage 1, just curious . thanks 

kajunnana's picture
kajunnana
Posts: 17
Joined: Jul 2014

Thank you! Praying that the PET scan shows something postive, Y'all are in my prayers!

Amy 

kajunnana's picture
kajunnana
Posts: 17
Joined: Jul 2014

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!

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

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.

icemantoo's picture
icemantoo
Posts: 3313
Joined: Jan 2010

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

todd121's picture
todd121
Posts: 1449
Joined: Dec 2012

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's picture
kajunnana
Posts: 17
Joined: Jul 2014

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!Cry

Phredswife's picture
Phredswife
Posts: 162
Joined: Apr 2014

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

kajunnana's picture
kajunnana
Posts: 17
Joined: Jul 2014

thanks Phredswife for the kind words. Hope everything gets better for your husband I will keep y all in my prayers.

Phredswife's picture
Phredswife
Posts: 162
Joined: Apr 2014

Thank you. He seems fine now so I probably shouldn't get so worried.  His type of cancer was nasty so everytime he sneezes or does anything different to normal I panic a bit! We have been told to take him back to ER if he does it again. So far so good!! You take care!!Smile

kajunnana's picture
kajunnana
Posts: 17
Joined: Jul 2014

Hello everyone its been awhile since I wrote. It's been a little crazy to say the least! Kennth did well during surgery they did the kidney first then the bladder. That was the longest 2 hours of my life!!! The dr. told me that we may have been able to go home the next day which would've been Thursday, but we ended up staying until Friday. Friday morning the dr came in & checked Kenneth and said he can go home! He also told us that the pathology report came back and the bladder cancer was what he expected, but the kidney was more aggressive than he thought! What a shocker!!! When we first went to this dr. he told me (after I asked a lot of questions) that after he would remove the tumor from the kidney that Kenneth would be cured! Well now he tells us that he has to watch him very closely.

But I have done every thing I need to do and we will be going to MD Anderson either this coming week or next. Maybe they will give us more information and check the spot on Kenneth lung, which his dr has never mentioned! So we are keeping our fingers crossed! 

GSRon's picture
GSRon
Posts: 1304
Joined: Jan 2013

Well, glad the surgery is over and went pretty straight forward.  You should get a copy of the Pathology report, this will explain things a little better. I had been quiet on the one comment you made, but perhaps it is time to tell you that currently there is no cure for Kidney Cancer. I do not know  what doctor said cured, but that sadly is not true.

 However there are some good treatments, should it recur.  Small tumors often never recur, but not always.  This is why regular follow ups are important.  How frequent usually depends on the Pathology report.  Still the future has a very bright light.  MDA is one of the best places to go to.  It is important that you stay with MDA if possible for follow ups.  They are experts.  Most local Oncologists do not have the needed Kidney Cancer experience.

Good Luck

Ron

sblairc's picture
sblairc
Posts: 586
Joined: Feb 2014

I was under the impression that surgery can be a cure for kidney cancer. While you may never know for sure (until it comes back as metastic disease or local recurrence). Do you mean that there is no cure for metastic disease? I'm never a fan when surgeons throw the word "cure" around so loosely, but it is possible to be cured from surgery. 

GSRon's picture
GSRon
Posts: 1304
Joined: Jan 2013

Sblairc... sorry,  but surgery is not considered a cure for RCC, it is a treatment.  I have heard of doctors telling their patients they are cured.  Any doctor that says that needs to be ahem "slapped" on the wrist.  

However small / low grade tumors usually do not recur.  This is an important distinction of cured Vs no recurrance (or Mets).  And yes, the statistics are in the 90+% range for the low / low tumor Pathology.  But unless it is 100% then a recurrance is possible, which is why the follow up is important, regardless.  There are patients here that were told they were cured only to have a recurrance some time later.  Good follow up is meant to catch such recurrance early and thus make it easier to treat. 

Cured to many, implies no follow up is needed.  The correct term is either NED or NVED, for No Evidence of Disease, or No Visible Evidence of Disease.  Some lucky folks are NED forever.

Sorry if this bursts your bubble.. but it is, what it is.. 

Ron

sblairc's picture
sblairc
Posts: 586
Joined: Feb 2014

Very well put, Ron. Thank! "Cured to many, implies no follow up is needed" This would be a huge mistake, with this sneaky scourge of a cancer that is for sure. We were lucky to have a GREAT surgeon that explained everything to us in realistic terms, and was very direct and forthcoming about the locally advanced nature of a T3a Stage (I hope I used the correct term here). 

kajunnana's picture
kajunnana
Posts: 17
Joined: Jul 2014

Thanks GSRon we sure will stay with MDA! Its only 3 1/2 hours away but if I had to go 24 horus away I would!

Jojo61's picture
Jojo61
Posts: 1310
Joined: Oct 2013

Thinking about you and hoping that all goes well for you and your husband.

Big hugs

Jojo

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