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5.8 centimeter mass

Encouraged1
Posts: 1
Joined: Apr 2018

Hello:

 

I've attemtped at posting this message more than a few times. Its very hard to belive that I am even needing this kind of support. Nevertheless I'm here so let me start at the beginning. Last year (February) we lived in San Deigo and my husband had complained about his stomach. He was a little constipated, gassy and just couldn't have a good bowel movement like he felt he needed to. So he went to the VA clinic and they performed some tests. CT scan and a complete physical. The CT results came back and they called him to let him know they saw a spot on his right kidney. They never called him back for further evaluation. Fast forward there was an opening at his level at headquarters in Jacksonville, FL. We decided it was a good time to move back to the east coast since we had talked about moving from Cali because of the cost of living. Fast forward to September we moved and my husband checked into the VA to establish care here. The doctor looked through his records and noticed the findings reported in San Diego and asked whatever happened with that. My husband told him they never called him back and he had forgotten about what they said because number 1 he felt better the stomach problems were gone. He started taking Metamucil and the contipation was gone and 2 we were preoccupied with the move....The doc in FL ordered new tests CT MRI with contrast...We got the results back showing the hard mass on his left kidney....immediate refferal to urology. The consult with the urologist totally blew us away...we drove 2 hours to Gainesville for the visit along with a couple other appts that day with the VA all went well. It was a good day we were laughing and joking at lunch....The urology consult was our last appointment. When they called him I had asked if he wanted me to come back with him. He replied naw I'll be right back. Fives minutes later my huband came back out to the lobby and called my name I looked up and he had this really weird terrified look on his face....I ran over to him and went back to meet with the doctor. In the room on the monitor was my husband's kidney showing the mass and an enlarged renal vein going directly into it. Recommendation is radical laparoscopic nephrectomy HIGH POSSIBILITY OF CANCER. Wait WHAT??? Everything mentioned in the appoinment after that was a blur...I seriously felt like I was speaking to an adult from Charlie Brown "Waaah Waaaah Whaaaaaa" the specialist recommended we go to the lab immediately for a chest xray...no spots visible in the chest....go home and wait for my call to let you know when surgery is scheduled. Two hour drive home after receiving that sort of news...Receivng this news a mere few weeks later after we construction and closing on our home was complete and after a lavish first time wedding celebrating 25 years (March 3, 1993) Yeah we were so distracted so happy unaware of what was brewing inside of him. Surgery is scheduled for May 7 in Gainesville....and we are scared to death. The waiting sucks!!! The renal vein bothers me...We have our faith...I pray over him...I pray for him, us, our chuldren and me.....I know God is still in charge and has the final say. "No weapon formed shall prosper...."

 

In hindsight do we wish we had followed up with the VA in California after not hearing back from them yes...part of the problem was we held on to no news is good news...... sorry if I rambled or didn't make any sense....this whole situation makes no sense....thanks for reading

After the AisleOAfter the Aisle

icemantoo's picture
icemantoo
Posts: 3195
Joined: Jan 2010

Encouraged,

--have fond memories of being told we have kidney cancer and the first thing they want to do is yank the kidney out. That was alwas something that someone else got. That was me 16 years ago this spring hearing those words. Lets hope for a boring and uneventful surgery and a full recovery. He will be scanned for at least 5 or 10 tears after. Ask about a chest CT besides the xray as it is more effective in picking up lung nodules even though it may pick up harmless ones. I could say the surgery is painless, but I would be laughed off this board. It took me 11 months after surgery to get back up on water skis.

 

icemantoo

Retcenturion's picture
Retcenturion
Posts: 240
Joined: Mar 2017

First off take a breath. You're in the right place to get answers to the million questions in your mind right now. Don't dwell on not following up the initial scans, its in the past and can't be changed.I recommend go through some past posts as there are a lot of newbies, myself included I'm 1 year full Neph that have had recent surgeries. You will meet some amazing people. Iceman was the first to welcome me and has a wealth of information. I found it harder on my wife as the caretaker during the process than on me. Ask questions, prep now for the procedure and line up help. When someone offers to help sign them up. Positive thoughts your way.

Brock1969
Posts: 80
Joined: Jan 2018

This is a great group and they will answer all your questions. What wonderful pics you included!! Your faith will guide you with strength and resolve, and the doctors will do their magic. Your mind right now is definitely in the spin cycle mode, but when things start to become concrete and real, a calm will come over you. They will get it out, he will be treated, and you will live that glorious life. All the best 

JoeyZ's picture
JoeyZ
Posts: 193
Joined: Mar 2018

I truly feel for you and how you are feeling. I hope you will do a little better as time goes by. We all pretty much do.

I had no symptoms at all, until last Oct. when I got blood in my urine. A few months later, we found a 10-12 cm mass. It's all in my profile. It had spread to the renal vein and inferior vena cava. I had to go out of state and have extensive surgery. Had a team working on me! I felt safe. They did a great job, although I was not happy to wake up and discover 100+ staples! I had surgery March 8th and 7 weeks later, now, I am doing well. They can't see anything more on a recent CT scan so we hope they got it all. I am taking Cabometyx 60 mg. as this was a very aggressive, fast-acting cancer. Not all kidney cancers are slow growing but MOST ALL are. 

My point is, it may not seem like it right now, but he should be fine. As to the renal vein, they can replace or repair it. They only had to remove a small section of mine, and a lymph node that was also cancerous. Not sure if it'd gone to the liver or not. That bugs me the most right now. Also why I want to be on the Cabo drug for now.

BEAUTIFUL pictures!!! I'm glad you got to have your good times and celebrations before this. Now you can have more in the future when this is behind you. All the best. Keep us posted, we want to know how you're both doing.

EDITED: To remove incorrect information induced by my then non-working brain. Thank you, Annie. I should have said to make sure you get the pathology report after the surgery...

Wehavenotimeatall
Posts: 479
Joined: Aug 2017

first thing to do is breathe

it’s not lOng to the operation and you will need to be calm 

This makes me so angry. Hospital had the evidence there and they didn’t pursue it... ithey should have been running round waving red flags ... big red flags.. saying get over here now

the shock is terrible

the waiting is terrible

Did he have no other symptoms for a year..

Joey... you cannot  tell the pathology from a CT scan... they need living tissue to do that... they can only say whether suspicious for cancer or not

 

Try not to freak out.. The operation will give you more information and thst will help you in the next stage as to whether he will need further treatment or not

praying for your whole family and we are here if you ever need us to hold your hand.. tight

Annie

 

Devastated Wife's picture
Devastated Wife
Posts: 52
Joined: Apr 2018

Encouraged1, I think I might live very close to you.  If you ever need to talk, I'm here.

My husband had to have this kidney removed also.  Similar story to yours.

Tapman63's picture
Tapman63
Posts: 135
Joined: Dec 2017

....thank you to you and your husband for his service.

Without a doubt, the waiting is the hardest part.  But know, you've found a group of folks here that can ease your mind.  I had a radical nephrectomy in February and had a few complications during surgery - and I came out on the other end fine (so far, knock on wood!).  Just breathe and try not to let the worry consume you.  If you have any questions or concerns, don't hesitate to post here.  Best wishes for an uneventful and successful surgery - keep us updated!

Jim

Nanaof10's picture
Nanaof10
Posts: 47
Joined: Nov 2017

But I felt compelled to respond to you.

First, Thank you BOTH for your service. I am an Army mom of 4, so I know your contribution as the spouse.

Second...BREATHE. It's scary as heck and it's going to be OK.

Third...My Bi-Lateral Kidney Cancer Story...to hopefully give you peace and hope.

I am 14 weeks post-op Right kidney Di Vinci robotic partial. Clear Cell Renal Cell Carcinoma

5/11/17 I had a UTI. Naturally, there is some blood that shows in the test. For some strange reason, and by the grace of God, my Dr ran a 2nd test 5/25/17. She has NEVER done that before, and, like most women, have had a bajillion UTI's in my 57 years. Still blood showing. 6/1/17 she ordered an Ultra Sound. Showed 'something' in my right kidney, but not identifiable.

Consult in June with Urologist. He believed it was just a very stubborn infection that would not clear up. Ordered a CT scan 7/17/17. In the course of 2 weeks in May and into the first week of July, I did 3 rounds of antibiotics, stronger kind each time. CT scan showed 'a 2.2 x 1.3 cm mass. This does not represent a simple cyst. Malignancy cannot be excluded'. Urologist was still on the 'infection' kick.

9/5/17 Urologist ordered an MRI that showed 'a 1.7 cm enhancing nodule right kidney compatible with renal cell carcinoma'. Dr was adament that it was STILL just an infection so he ordered another CT scan in 11/27/17 and let the surgeon make the final determination. That scan showed 'an Enlarging complex cystic neoplasm posterolaterally in the middle pole of the right kidney which has increased in size from 1.5 to 2 cm in greatest diameter over a four-month interval'. Surgeon shook his head and said Cancer and it should have come out months ago. I had to wait until January 24th 2018 to have surgery. 7 LONG, Agonizing months of waiting and worrying from the 'Found' point on the 1st CT scan.

In the meantime, the CT scan in November showed an 'Indeterminate 0.5 cm nodule laterally in the middle pole of the LEFT kidney, a small solid neoplasm at this site is not excluded.' Surgeon said probably cancerous also. I go the end of this month for my first post-op scan on my right to make sure all is well as well as to see what the left side looks like. I'm fully expecting him to schedule surgery on my left side and will be 20 weeks post-op when scheduled. JUST long enough to have recovered from the right side. And ANOTHER 7 months of waiting....again from the 'Found' point on last CT scan. Only difference this time...recovery has taken my mind off it and I know what to expect.

Faith and prayer will get you throught this, as well as ALL the wonderful support on this board. Please keep us posted.

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