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are we doing the right thing?

lovingwife_scared
Posts: 8
Joined: Mar 2012

First of all, I feel lucky to have found this discussion board, many caring people who have been through similar circumstances. We recently learned my husband has a 7.5cm mass on left kidney and are experiencing every emotion imaginable. He just turned 50, is healthy, nothing other than colds ever. Two weeks ago, he started urinating blood, then extreme pain set in at night, and we headed to the hospital. By the time we got to the hospital he was in severe pain. They hooked up IV for pain killer and saline, and took him for a cat scan, they were thinking kidney stones, looking for how many and what size. At 3:30 in the morning ER DR came in room to tell us what they learned, you don't have kidney stones, you have a 7.5cm renal mass on left kidney, could be cancerous, needs to be removed. He went through everything it could be, instructed us to go home and call doctor in morning to get referred to specialist ASAP. We were shocked!

After consultations with our primary physician, and 2 Urologists, and another CT with contrast, we are coming to grips (we just kept thinking ER made a mistake) with the only way to treat is full removal of kidney and mass, too large to even consider a partial. We have surgery scheduled 4/5 using da Vinci method. The good news is that it does seem to be contained to his left kidney, no apparent signs of spreading.

We still cannot believe he has to have one of his kidneys removed. I have been trying to research to see if there is anything else we should be asking for treatment or wondering if we should be trying to get into somewhere, John Hopkins, U of M, where partials may be done on a larger size mass, but then we already have been told of the risks of reoccurrence if you don't remove whole kidney. Our Urologist has performed more than 500 da Vinci surgeries with the same team so we do feel lucky that we found the best in our area. We are not savvy in medical at all.

We are wondering about recovery period after surgery with da Vinci. How long did you have to stay in hospital? Some of the posts can't tell if traditional or da Vinci.

Have you found that you are now susceptible to high blood pressure, diabetes, etc. since removal of the kidney?

We are nervous, scared, thankful (in the grand scheme of possibilities, at least it looks like it is contained, and at least it was found), but still extremely confused. How could this be happening. But then I read many stories on here that others have went through the same and it seems comforting to just write this post. It has only been 2 weeks and we have been through so much between shock of learning, then accepting, then telling friends and family, and this week multiple appts for surgery prep and testing for kidney functionality. Is there more we should be doing?

Thank you for letting me comment........

icemantoo's picture
icemantoo
Posts: 1554
Joined: Jan 2010

Dear lovingwife-scared,

Who wouldn't be scared urinating blood and then being told you have Kidney Cancer, and then major abdominal surgery right out of the gate. I sure was. Although a 100% recovery without anything further is almost guaranteed with tumors 4 cm or under your husband's odds are close to that even at 7.5 cm if they find no evidence of mets. Mine was 9 and 1/2 years ago at 4.2 cm. and other than follow up tests I have had no further tratment. I was 59 then and will be 70 in a mere 16 months. My neighbor Faye across the street had her nepherectomy at age 64 and is doing fine now at age 81.

The surgery is not fun and it hurts a little. Well maybe more than a little. Mine was laprscopic before the DeVinci machine. One poster says that I am so old that DeVinci himself did my surgery.

The normal recovery is 2 days in the hospital, 10 days on the couch and with most of your strength back by 6 weeks.

After the kidney is out, in addition to the tests for recurrance you should make sure that your kidney function is ok and some of your blood results will show new normals.

Also you have to watch blood pressure as having 1 kidney can increse blood pressue or adversely effect kidney function which is part of the problem. My experience is that with the non cancer issues a Nephrologist can do this better than a GP or Cancer doctor.

Just before my surgery my wife took me to a Bed and Breakfast on the Canadian side of Lake Huron to relax. We went to a British Pub for dinner and I was not amused when they brought out the English dishes for viewing which included Kidney Pie. Instead take your husband for a good steak dinner before the surgery. Us men appreciate things like that.

May your hiusband have a full and complete recovery so he can take my place on this board when it is my time to go.

Icemantoo

lovingwife_scared
Posts: 8
Joined: Mar 2012

Dear icemantoo,
I was actually hoping you would respond as you seem to be very knowledgeable, and very caring to everyone. It is comforting to know you went through similar and are leading a good life, no reoccurrence, and supportive to all. I like the suggestion of the steak dinner, wish we could do a getaway (without kidney pie, thank you)but don't see how we can with such short notice. We both work a lot, and he is trying to get things in order to be out for the surgery, but we both are trying to be sensitive to our last days before surgery so work is taking a back seat as it should.

We are private, but can see us being support for others in the future :)

Good luck to everyone else you is going through similar. Thank you for your support!

livealive's picture
livealive
Posts: 127
Joined: Feb 2012

First, I am sorry. I learned of my own situation 4 months ago, and am still in shock. It is surreal. I did a partial 2 months ago, where the tumor was removed, it was 2.5 cms, but there was renal vein invasion - which they told me on the pathology report - which comes after the surgery.

I cannot say which one will be better for your husband, but PLEASE find a good hospital, and an excellent doctor, Sloan and Presbytarian in NYC, Fox Chase center in Philly, Johns Hopkins in DC, MD Anderson in TX are excellent, I don't know about the west coast and I do not know where you are.

Removing a kidney at 49/50 has it's perils as well. I was faced with a similar choice, and I chose to retain the kidney, since I trust my doctor, but who knows whether I made the right decision.

That said, it is important to remove the tumor, don't panic, but don't delay.

Please ask any questions of if we may be any help.

Raj.

MikeK703's picture
MikeK703
Posts: 235
Joined: Sep 2010

Hi,
Sorry to hear about your run-in with kidney cancer. All of us here, have gone through similar emotions and confusion about what to do next. There is no easy answer. My mass was only 2.4 cm and I had to get a radical because of its location, too close to the main renal artery, vein or whatever. I was advised it was just too risky to do a partial. I have no regrets about going with the radical. You already know the negative about having a partial. Here is a web page that discusses a POSSIBLE long-term negative of the radical, especially in a younger patient.
http://www.news-medical.net/news/2008/01/10/34195.aspx
My high blood pressure actually went down after surgery, due to a low-sodium diet. I was pre-diabetic but for some strange reason after surgery, my blood sugar went from the mid 120s to now mid-90s, most likely as a result of doing an overall better job with my diet.
Losing a kidney is not the end of the world as can be testified to by many here. You can function just as well with one as with two as long as your remaining kidney is healthy.
I wish you and your husband peace in your difficult decision and a speedy recovery with an excellent prognosis.
Regards,
Mike

angec's picture
angec
Posts: 622
Joined: Mar 2012

Hello.. My mom had the DaVinci surgery last Thursday, she is 79. Usually it would have been one or two days in the hospital but since she is a diabetic her sugar went up so high during surgery that she had to have intubation for three days after. She came home on Tuesday. She had a radical right kidney removed. We are in NY and went to Methodist hospital, she didn't want to travel to Sloan as it was too far for her. Others in for surgery were in a day or two and went home. She has four quarter inch scars and one scar about 4 or 5 inches near her belly button. Your husband will do fine, don't worry. Hope all goes well. Take care..

foxhd's picture
foxhd
Posts: 1920
Joined: Oct 2011

My story is extremely similar to yours. Urine in the blood, incredible pain, thinking it was kidney stones . Our tumor size is also similar. Plus I was only a few days from my 59th birthday. I went home with pain meds first but had to be readmitted due to uncontrollable pain. Don't be concerned at this point about him developing high blood pressure or diabetes. Only concern yourself with the job at hand. Get the kidney out,recover, and count your blessings. Once you have had time to reflect on how fortunate you are to have dealt with kidney cancer and are able to put it in perspective, you can deal with other issues. It is life changing. But he'll adjust.

Texas_wedge's picture
Texas_wedge
Posts: 2807
Joined: Nov 2011

Wise advice, as ever - get priorities right and focus on the present task. The other issues can be handled in due time.

Neen
Posts: 6
Joined: Mar 2012

I am new to this sight as well. I wish i had known about it before my surgery there are so many wonderful thoughtful people on here. Just knowing you are not alone. I was diagnosed on Feb 9th consulted with my urologist on the 13th and on the 28th of Feb I had my surgery. I only had 1/3 of my kidney removed (when I went into surgery they were not sure if they could save my kidney at all)We were scared, nervous and thankful just as you are!! It is not an easy surgery but so worth knowing the tumor is gone!! Best of luck to you and your husband I really don't know of anything else you could be doing the waiting is the hardest part. When the surgery happens just make sure your husband stays a head of the pain!

cindygodfrey2
Posts: 45
Joined: Mar 2012

I just had to respond since our stories sound so much alike. I am a scared loving wife too! Your story is our story except my husband is about 2 weeks ahead of yours. My hubby had a laparoscopic nephrectomy on Monday, came home on Tuesday and is slowly recovering at home. We live in Dallas Texas. Please feel free to holler at me anytime! I'll be a good shoulder until I learn more about all this!

lovingwife_scared
Posts: 8
Joined: Mar 2012

Thank you to all you responded. Over the weekend as we talked through the situation with friends and family, we still are questioned "Are you sure they have to take the whole kidney". Who are we to second guess the experts. No one we know has ever been through anything similar and the natural reaction is to spare the kidney as much as possible. We have our final pre-opt with our surgeon today, but all is looking like we are on track for full removal this Thursday, 4/5. Everything for pre surgery screening has come back great, he is very healthy. The only results we have not heard yet are regarding the kidney functionality test to make sure the remaining is working fine--we will hear those results this afternoon.

Someone asked where we are from. We are in Michigan. Thank you all for your support, including actual survivors and spouses. We have been married 30 years and have had a great life with two children. This is the hardest thing we have ever had to deal with, but we will keep hopeful and grateful that once he heals, we should be go to go for many, many more.

Good luck to everyone else dealing with upcoming surgery, recouping, supporting, and great to hear from those who have been through this and still going strong.

garym's picture
garym
Posts: 1651
Joined: Nov 2009

Must be something in the water... Don't sweat the full vs. partial, I had the full 2-1/2 years ago (I was 58) and other than some minor diet changes, by choice not necessity, life is just as it was before surgery physically and mentally I look at life with a whole new set of priorities. Its hard not to look at this as anything but a negative situation until after the surgery and recovery are over, but in reality this is perhaps the most precious gift you and your husband will ever receive (birth of your children excluded). Celebrate that it was found early enough that surgery is all he may ever need, anticipate the date with the understanding that it means being around for grand children and great grand children. I figure that at the rate science is advancing, if I ever have trouble with my remaining kidney, they'll probably just grow me a new one, who knows.

Texas_wedge's picture
Texas_wedge
Posts: 2807
Joined: Nov 2011

Presumably they'll need to develop a special strain of kidneys for Michiganders!

garym's picture
garym
Posts: 1651
Joined: Nov 2009

Our kidneys are already strained enough thank you!

love4life
Posts: 33
Joined: May 2010

My mom was 65 at the time of her surgery to remover her left kidney. She went to Henry Ford Hospital and had wonderful care while she was there and has had excellent care during her follow up visits too. Her remaining kidney has worked wonderfully. If your gut tells you your doctor is good than trust in him/her completely. With that many procedures I'm sure he is an expert at this. If his name happens to be Dr. Rogers you are in wonderful hands!

lovingwife_scared
Posts: 8
Joined: Mar 2012

Well the days are counting down and surgery is tomorrow at 10:15 for my husband. Our daughter is flying home from college today, and son is driving home tonight from college; so our whole family will be together for the suregery. We continue to be increasingly more nervous and scared, normal emotions I'm certain. Had our last appt on Monday for prepping for the surgery. Doctor reminded us the first thing he would be checking is his bladder--he had urinated so much blood. If any polyps are found he intends to remove them first, then on to the full removal of the mass and left kidney.

It is comforting to hear all the success on this board, and also exposes what realistically we are dealing with. We hope all goes well tomorrow, and hope that it is indeed contained to the kidney.

Our thoughts and prayers will be with everyone else scheduled for surgery today and in the near future, for those recovering from surgery, and for those dealing with on-going challenges. This whole process has been an eye opening, humbling experience. Tonight at 3:30 am will be three weeks from when we just learned of the mass, so three weeks from on set of appearance to surgery to remove is still so serile.

Please keep us in your prayers this weekend! Thanks for all your support!

icemantoo's picture
icemantoo
Posts: 1554
Joined: Jan 2010

lovingwife_scared,

It is going to be a little rough for a few days, What makes it easier is that you can tell people he had Cancer, not that he has Cancer. Sorry for this initiation into our little club. If I could do it (scared of Doctors and having my blood taken) anybody can.

Best wishes for a sucessful surgery and full recovery.

Icemantoo

garym's picture
garym
Posts: 1651
Joined: Nov 2009

lovingwife_scared,

Its been three weeks and I'll bet it passed quickly. The next three weeks may seem a bit slower at first, but by then you will be able to look back and see that it was well worth it. The next few days are the hardest, things will get better quickly after that. Walking and water are important elements of a speedy recovery. Now take a deep breath and repeat after me; EVERYTHING IS GOING TO BE FINE. You are in my thoughts and prayers.

Good luck and Godspeed,

Gary

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