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Terrified

LMD828
Posts: 26
Joined: Dec 2016

Hello -

My husband noticed urine in his blood last week. He saw his primary care doctor this week, who prescribed him antibiotics and advised him to get a CT Scan.  

He had the CT Scan today @ 1:30.  At 2:20, the doctor called to say he had kidney cancer. The technician saw a large mass on his kidney and let the doctor know immediately.  As the next few days are holidays, we are home terrified until we hear more next week.  

The only thing I've been able to learn is that the blood in the urine means it could be late stage.  I don't know where to begin.  What do we learn next? What are the next steps?  We are both so scared.  He is 50 and we have two teenagers.  I think it's best that we not let them know until we have a full diagnosis, but teenagers always know when something is up.  

Any words of wisdom?  My best to all of you.

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

LMD828,

Blood in the Urine only means it could be Kidney Cancer. Thats what happened to me in the Spring of 2002. Still here. From your post the CT confirmed it is probably Kidney Cancer. Been there done that. You also state that blood in the Urine means it could be late stage. For myself and most others may be does not mean it is late stage. Stage is determined by size and pathology after they take the Kidney out. Not fun, but again that was in 2002 when I was 59 years young. In order for us to respond appropriately what is the size of the suspected mass. It sounds like you will be meeting with a Urologist who specializes in Kidney Cancer to discuss surgery and your tentative prognosis. We have all been there and done that. There is not one of us on this board who was not scare sh--less when told we probably have Kidney Cancer. Many like myself have had no other tratment other than the initial surgery. Many on this board are doing well years later even where challanges have presented themselves. Not a fun way to start the holiday, but those of us on this board will help you get thru this.

 

Icemantoo

LMD828
Posts: 26
Joined: Dec 2016

Thank you so much for your comments.  He was not told size - just that the tech saw a "large mass".  Really vague information.  I think we were both so alarmed that the call came in about a half hour after the scan.  We really know nothing more.  Your words are encouraging.  Have a nice holiday.

hardo718's picture
hardo718
Posts: 853
Joined: Jan 2016

Sorry you find yourself here.  That is certain to throw everyone into a tailspin, BUT lets clarify things a little.  Blood in the urine is not necessarily late stage at all.  Do you know the size they are referring to?  Depending on the size and location they may be able to remove it and leave most of the kidney intact. Personally, my surgery was done via robotic laparoscopic, therefore I have multiple incision sights vs the open procedure where you typically have one big incision. 

I would strongly advise a couple of things:  first and foremost try to avoid Google searches.  Most information is very outdated and downright scary.  As many will attest.  Next, the best doctor to connect with is a Urologic Oncologist and someone that deals with this diagnosis frequently.

I will be adding you both to my daily prayers and hope that you can enjoy your holidays with your kids.  Easier said than done, I know, but don't stop making memories.  Please keep us updated.

Donna~

LMD828
Posts: 26
Joined: Dec 2016

Thank you so much, Donna.  We don't know any specific measurements.  Hope to have details next week.  Happy Holidays to you and those you love.  

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

LMD828,

 

Large means different things to different people. Find out the size.

 

Icemantoo

LMD828
Posts: 26
Joined: Dec 2016

I had the same thoughts - it'll be a bit of a waiting game until we have concrete data.  Thanks again.

Footstomper's picture
Footstomper
Posts: 1238
Joined: Dec 2014

I discovered my cancer the same way on May 1st 2013. Scarey aint the word! As far as I know blood in the urine is not connected to any stage - usually its kidney stones. At the moment there is nothing you can do but await further examination and diagnosis. 

First of all, enjoy the holidays - there is no point in worrying about things you dont know or cannot control. The word Cancer is so scarey that it removes all other words from the conversation. Donna is right : avoid Google it is either out of date or insane. If you want lots of medical information there is a good site called Smartpatients.

The word 'Cancer' sounds like a death sentence, but it is not anymore. Treatments are being developed all the time and it looks like it is rapidly turning into a chronic but treatable disease.

Good luck with your treatment, keep us informed. Dont panic and have a merry christmas. Let us know how you get on.

LMD828
Posts: 26
Joined: Dec 2016

Thank you very much 

Bay Area Guy's picture
Bay Area Guy
Posts: 492
Joined: Jun 2016

I agree with everything Ice and Donna have said.  I had non-visible blood in my urine and while it turned out I did, in fact have kidney cancer (chromophobe renal cell carcinoma to be precise), it was at a very early stage (1.5cm, which is a very small).  The lesion was found in late 2013, but I did not have surgery to remove it until June, 2016.  The urologist I had from Stanford felt it was premature to take it out, as some lesions of this size never develop into cancer.  Like you and your husband, when my wife and I first read the results of that initial CT scan, I was shaking with fear.  I called my sister, a nurse practioner (in child neurology, but still about the smartest person I've ever met) and she explained many of the same things the urologist would later explain to me.

In terms of treatment, there's a variety of methods.  Surgery is still the standard for treatment.  In my case, I had a robotic assisted laparoscopic partial nephrectomy (only the part of the kidney with the lesion is removed) and was in the hospital for about 23 hours in total (3PM surgery and 1:30PM release the next day).  I believe Iceman is the veteran of the group and had a radical nephrectomy (complete removal of the kidney) to address his problem.  Those are the two basic surgical methods and surgery has the highest success rates.  There are other less invasive procedures that depend on the size and location of the lesion, and on a patient's overall health.

But I can't stress enough to you that kidney cancer IS treatable.  Ice has been around 14 years since his diagnosis and by my admitedly rusty arithmetic skills is now 73 years of age and shows no signs of slowing down.  I'm 61 and I plan on being around for a heck of a lot longer and I plan on it being cancer free.

We'll all be here to help you through this situation.

WhatIsLife's picture
WhatIsLife
Posts: 38
Joined: Dec 2016

I think probably everyone here has been where you are right now, so you and your husband are not alone. Lousy timing to find this out, not that there's ever a good time, but I would echo Donna and caution you not to go crazy on the Google searches, something I did when I was in your position just a few months ago, and I ended up with a lot of scary, and wrong info.

Probably the best thing to do is try to not worry (easier said than done, I know), enjoy the holidays with your kids and first thing Monday, make an appointment with an urologist that specializes in Kidney Cancer, and take it from there. I'll be keeping you and your husband in my thoughts and will be hoping for the best. Hope you are able to have a happy holiday and best of luck to you!

Kevin

JerzyGrrl's picture
JerzyGrrl
Posts: 760
Joined: Jun 2016

What they've said about size, treatment, etc.  -- I ditto that. 

It's pretty hard for someone who's not a renal cancer specialist to look at a CT and know FOR SURE what they're looking at is renal cell carcinoma.  Even those who are specialists are just making (much) more educated guesses.  It's not a done-deal until the pathology report is back, after surgery. 

Blood in the urine may or may not have something to do with the mass on your husband's kidney.  I had blood in my urine from kidney stones which was what they went looking for when they found the mass on my kidney.  It was fortunate, or else I'd never had known.  Who knew I'd ever be grateful for kidney stones?

The good thing is, kidney masses typically don't grow like kudzu.  While I'm sure you heard "cancer" and thought, "PFFT!" that's not how kidney cancer works.  Also, most older adults have cysts in / on their kidneys, which have nothing to do with cancer.  They tend not to grow like kudzu either.  Don't cancel your Super Bowl party plans. 

I'm stunned that your husband's physician would call you mid-afternoon the last workday before Christmas to bestow his gift of "wisdom" and scare the two of you out of several years' growth.  When you're thinking a little clearer (Don't worry, you will be, even though it might not seem like it at the moment), perhaps a change of primary care physician is in order. It'll help to have people who are supportive on your care team (and, yes, because you're the spouse, you're part of the team). 

As for your kids, I'm sure you didn't raise them to be stupid. They're going to figure something's up, and you know them best, how much to tell, who will / won't freak out.  I did my best not to freak out friends and family when I didn't know the results. No teens were involved, but my explanation -- given first to my daughter -- went something like this...

Remember my kidney stones? As a follow-up, the doctor sent me to get a CT and when they looked at the image, they saw something on my kidney.  It might be something, it might be nothing -- nothing, like just a cyst. I'll go to see a specialist.  If it's nothing, it's no big deal.  If it's something, there's things they do to take care of it.  Right now, I'm kind of stressed because I like to know what it is and what exactly we're going to do about it.  But instead I get to wait. [Obviously you can change, delete, or add what you see fit if you see the need to let your kids know.]  And, of course, let your kids know how much you love them. Let them know that, if you're acting distracted or stressed, it's because you are.  Also let them know a couple of specific things maybe they could do to help out.  [Oh, and for the record, my daughter took the news way harder than I was... I'd sort of been suspecting "something" was there].

Right now, if your kids have questions, there aren't really too many answers you can give them.  But -- just like your questions -- bring their questions here, too.  We'll do our best. 

Hugs to you and yours,

Jerzy

stub1969's picture
stub1969
Posts: 888
Joined: Jul 2016

First of all welcome!  Second, stop searching the internet about kidney cancer.  The information you received is inaccuate.  Sure some people first have visable blood after the mass gets really large.  BUT, many people have it when it is smaller.  I think alot of it depends on the placement of the mass on/in the kidney.  In any event--try to erase that information out of your head.

I agree with Iceman.  Find out the size from your doctor.  When I had my CT scan the technician used the term "large", also.  My tumor was 5.3 cm at the greatest dimension.  So, you see, large DOES mean different things to different people.  Once you find out the size, then fill us in.  We'll try to help in any way we can.  Until then, try to relax and enjoy the Holidays. 

Blessings--Stub

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

Sorry for what you and your husband are going through, LMD. I too had my diagnosis around the Holidays. First I had to tell my children, but since I was so well informed, mostly due to this forum, I was not panicked so they weren't either. If I was okay, then they were in my case.

Too bad you had to be told today. But probablly your primary doc thought he was being upfront. Tells me he probably doesn't now much about kidney cancer. I would suggest you use your FAITH and continue LIVING, eacn and every day. You'll have more definitive answers soon enough.

In the meantime we're here for you and will walk this journey along side you..all the way!

Hugs to you and yours !

Jan

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

Sorry you got such scary news at Christmas time. We were in the same position as you 3 years ago about 3 days before Christmas and we had to wait for ages to get any clarification as to what it all meant. I agree with everyone else don't google as you will just get wrong info. My hubby was told he had a large tumour and everything looked grim. 3 years later he is still here and after surgery it hasn't returned. Praying you get the right people at the right time to help you.This site is excellent and the people are lovely so vent away if it helps. Glad you have found it so soon so you can get some support. Love to you and your family.

foroughsh's picture
foroughsh
Posts: 779
Joined: Oct 2014

Blood urine and flank pain are two main symptoms of both kidney stones and kidney cancer. None of them are related to stage or anything like that.  My tumor was 10 cm and i've been cancer free since the nephrectomy day. It was 28 months ago.you need to have more information about the tumor but it won't be befor surgery.

Wish you both best

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

Welcome to our forum. What horrible news to get just before Christmas. I know you must feel shocked and stunned. But I am glad you found us.

As others have mentioned here....it is likely not as bad as you fear. I had a 13 cm tumor on my kidney (that is very large). Had it removed December 2, 2013...stage 3, grade 2. I made a huge Christmas dinner 3 weeks later! And there has been no looking back!

This is a serious matter, but if you get proper care (find a good kidney cancer specialist) you will get through this just fine!

Sending good thoughts your way!

Hugs

Jojo

LMD828
Posts: 26
Joined: Dec 2016

Thank you all for your kind words.  You have given me some hope.  I have looked into some local urologic oncologists - we are in the Boston area.  Once we have more information, we will pursue.   God Bless all of you - your stories have made things a little better here.

mrou50
Posts: 389
Joined: Mar 2013

Sorry you are here, but happy to have you join our family.  First of all I am shocked that you got this information over a telephone call.  That was cold, any doctor would know that you are bound to have tons of questions.  As everyone has said it is not time, nor is it ever time for panic.  My suggestions if you have not done so is get a good oncolgy team that has a doctor the specializes in Renal Cell Cancer, then after meetine with the team choose the best course of action for you husband and your family.  As for your family I am feel that teenagers should be included in all of this but not until after they have been educated what RCC is and all of the options there are with the disease.  Kids are smart, you are correct when you say they know something is worng.  As others have said with the exception of this site stay away from the web for information, and watch out for the well meaning family and friends who send you get well over night remedies that they saw on the web or heard from a friend who heard from a family member who heard from a co-worker...you get the picture.  These people mean well but they are not educated in RCC your medical team is or they should be. I wish you and your family the best and I will add you to my prayers.

 

Mark

mlph4021's picture
mlph4021
Posts: 76
Joined: Dec 2016

Was my first "symptom" and I just had my right kidney removed Dec. 3rd. along with all the surrounding tissue. I had a "football" removed in total according to my surgeon. After testing, it was staged as 2- all margins clear. Blood in the urine definitely does not mean late stage. Good luck, try not to worry. Chancces are good he will have to have the kidney removed and then will be able to move on. 

LMD828
Posts: 26
Joined: Dec 2016

Thank you - I am more hopeful with each comment.  The unkown is just so scary and I'm trying to keep a brave face for the next few days.  I wish all good things for you. Thanks again.

JoanneNH
Posts: 115
Joined: Sep 2013

LMD828:   You said you are in the Boston area.   I am sure people here will respond with the names of some very good doctors in Boston to recommend.

 

Just to let you know also that you can request a copy of your radiology report.   I have my own portable medical record binder with office notes, radiology, pathology, op note, etc.

 

 

 

Max57's picture
Max57
Posts: 172
Joined: Mar 2015

am stage one and I had blood in my urine....Boston have the best RCC  doc I live in NH my Sargent was Sara maClear one of the best 

JoanneNH
Posts: 115
Joined: Sep 2013

Max 57:  Is that the correct spelling of your Sargent  ---->  Sara maClear?  I couldn't  find a sargent with that spelling.

Footstomper's picture
Footstomper
Posts: 1238
Joined: Dec 2014

I would suggest an attack of spell checking. Sargent = Surgeon

LMD828
Posts: 26
Joined: Dec 2016

Found Sarah McAleer in Manchester NH - that must be the one.  Thanks!  

We haven't even met with my husband's PC yet to review the CT scan report.  The tech just called the doctor on call as soon as they saw "a suspicious sizeable mass" during the CT.  Should he be looking for a urologist or an oncologist?  There is so much unkown and we are still in shock.

 

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

LMD,

Usually Family physicians are only useful for a diagnosis and referring you to the right specia;ist. You need to see a Urologist who has Kidney Cancer as one of their specialties    along with a copy of your scan, not just the report. Good luck and may let the force be with you.

 

 

Icemantoo

hardo718's picture
hardo718
Posts: 853
Joined: Jan 2016

A Urologic Oncologist.  Best wishes.

Donna~

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

Usually a Urologist who specializes in Kidney Cancer has a background/training in Urologic Oncology as well. Sometimes you may need to consult with a separate Oncologist as well though. Usually a Urologist who does Kidney Cancer surgery is trained in Laproscopic and Robotic surgery and they tend to be younger as these specialties were not common years ago. In other words it is the younger guys in a large Urology practice who do this stuff (speaking generally and from my own experience).

 

Icemantoo

JoanneNH
Posts: 115
Joined: Sep 2013

If I were in the area, I would probably head to Dana Farber.

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

LMD to save you a couple of extra appointments, I would ask your Primary doc if you could review the results with a Urologist who is a surgeon for RCC (renal cancer). Your primay may or may not be helpful and cannot tell you the plan anyway. You can call the Urologists office and see if they are connected to the place where you had the CT scan via computer. Again, its up to you, but the urologist/surgeon should be the one you are talking to about all of this.

Keep in touch..

Hugs, Jan

Bay Area Guy's picture
Bay Area Guy
Posts: 492
Joined: Jun 2016

My primary care physician referred me to the urological oncology group at Stanford University.  By the luck of the draw, I got a wonderful urologist who explained things to me in ways that even I could understand.  When the time came for treatment, he referred me to one of the three surgeons in the group.  As ice points out, the surgeons tend to be the young guys in the group.  The urologist was my age, while the surgeon looked fresh out of high school.  I just, of course, but, gosh he looked young.  But he was versed in the latest robotic surgery techniques and, other than what my says was a fire alarm in the middle of my surgery, everything went off without a hitch.

Max57's picture
Max57
Posts: 172
Joined: Mar 2015

Sarah McAleer, M.D. 
Urologist

Sarah McAleer, M.D.

  • Graduated from Boston College and Cornell Medical School
  • Residency at Brigham and Women's Hospital
  • Board Certified in Urolog 
  • She is  one of the best
JoanneNH
Posts: 115
Joined: Sep 2013

Oh, OK, Max.

Sara maClear = Sarah McAleer.

Max57's picture
Max57
Posts: 172
Joined: Mar 2015

Sorry for the miss spelling ! Pardon me 

Deanie0916
Posts: 383
Joined: Nov 2016

...is the hardest part. I hope you get good news when you find out more information. I agree with everything that the other members have said. You and your family are in my prayers.

LMD828
Posts: 26
Joined: Dec 2016

You are so right.  We still know nothing. Doctors' offices were closed today also.  I don't even know the size of the darn thing and I'm beginning to get very angry that they dropped this on us with no details or direction.   We just want to get started and make a plan to conquer this.   I am trying to hard to be strong for my husband but I just bit his head off and I feel just awful.   This stinks.

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