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beginning of journey with loved one, need some support

ARnurse's picture
ARnurse
Posts: 3
Joined: May 2015

Hi all.

My partner (healthy 36 y/o white male) was having gross hematuria (large amount of blood in urine) one week ago with no pain or any other symptoms. I took him to the ER where a CT showed a mass on his kidney.  His blood work/ labs were normal.  He saw a urologist this past Tuesday and the urologist said he was certain it was cancer.  The entire kidney was covered and he told us the kidney would need to be removed.  On the CT he could not see any evidence that it had spread elsewhere but they did an MRI yesterday and have a cystoscopy scheduled for next week.  I know the MRI will show if it has spread and although the doctor gave him a good prognosis, I am so very nervous and upset.  I have never dealt with anything like this before in my personal life (but plenty as an RN).  He is upset too and we are both doing our best to hold it together.  We have 3 kids.  I just need some support.  He hasn't had it staged or sized or anything like that yet.  The MRI results normally take 24-48 hours and so maybe we will get word today.  Any advice or info you guys can give would be appreciated.

Thanks, hugs.

 

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

I am so sorry to hear about your partner's recent discovery - and at such a young age. I can imagine it was a sleepless night or two for you.  If it is contained within the kidney, though, the prognosis is very good. They really can't say what stage, etc. until they remove it. This is the time to ensure that he has the best care possible. He needs to see an oncologist that specializes in kidney cancer. Also, they don't usually test the kidney/tumor at this point because the kidney will  have to come out anyway. There is a chance that the biopsy could spread the cancer cells into the body. Whereabouts do you live? People here can chime in as to the best clinics to use.

Try not to worry too much (easier said than done, I know). You will find support and great advice here. Take care!

Hugs

Jojo

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

Hi ARnurse . Sorry you have to be here but you have come to the right place for support. The people here are lovely.

My husband was diagnosed with Rcc over a year ago and I still remember how shocked we felt when we were told he had cancer.  Our family spent that Christmas in total shock. His tumour was 14cm  but after his nephrectomy he is now NED.

I hope it doesn't end up being cancer in your husband case but if it is we will be here for you. Hugs Melissa

icemantoo's picture
icemantoo
Posts: 3211
Joined: Jan 2010

AR,

Get the size of the mass from the CT result. The other tests are just work up for the surgery (a nepherectomy). Not fun and no way to sugar coat it. Mine was discovered 13 years ago this month. Any mass approaching the size of the kidney is something that must be dealt with ASAP. We on this board are all veterans of the neph. and will help you get thru it.

 

Icemantoo

todd121's picture
todd121
Posts: 1425
Joined: Dec 2012

We hope for the best. You won't really know the size/grade/stage until you have the pathology report in your hand. Anything else is a guess. He should have a chest/abdomen/pelvic CT with contrast for further staging in any case at some point either pre-surgery or a 1-2 months after surgery. Pre-surgery will let you know what you're dealing with in case there are tumors anywhere else. I suggest finding a medical oncologist who has experience with RCC soon and getting an opinion. The urologist may discourage this, but most of us feel that these oncologists understand systemic disease and how to treat it better than the urologist/surgeon. Getting it out is probably first priority, but I'd go for a consult soon after that. If there are any drug trials he might be interested in joining, most have a time limit of 2-3 months following the nephrectomy, so it's important to get information on those as soon as possible. Your RCC medical oncologist will be familiar with those trials.

Best wishes,

Todd

angec's picture
angec
Posts: 923
Joined: Mar 2012

See if you can get your hands on all of the reports from the hospital and any reports or tests done every time. You can always share those on the boards if you want more understanding of what they mean. I would get a second opinion and see a urologist / oncologist who specializes in RCC.  Did he have any night sweats, fever, lose any weight, high blood pressure? Those are usually telltale signs of rcc, but doesn't always show up.  In any case, good that nothing shows up anywhere else.  They will do the surgery and monitor him with scans.  Always a chance it is not cancer, no one can be 100% sure until they take it out.  Praying for you guys!  Keep in touch!  They can manage RCC very well these days, not a death sentence.  :)

Allochka's picture
Allochka
Posts: 865
Joined: Nov 2014

I fully understand how you feel. Your post brought me back to last November - my partner, 35 years, was diagnosed then.

you've received many good advises already, I have nothing practical to add. Just want to say that you should be strong for him, make him feel you will fight together, and show your confidence in your victory. I know this is scary. But as Angec said, it is not a death sentence. It is easily treatable with surgery in early stages and managed well in later stages. Hold on, keep us posted or ask questions. Vent here, and show your bravery to your loved one!

jason.2835's picture
jason.2835
Posts: 336
Joined: Nov 2014

Nurse,

I was 35 when diagnosed.  So many questions run through your mind when it happens to someone that young.  "Is this normal?"  Cancer on the whole is a tricky son of a .....  Makes no sense.  I am a pretty healthy person who never smoked, did drugs, overweight but not morbidly or anything.  Just doesn't seem to make any sense.  But here's hoping that your partner can have a smooth kidney removal and you can move on like I did.  Keep us posted; there are people here of every experience level.  I was stage 1 with a small tumor (2.8 cm), so I don't know a ton about the advanced treatments, but hopefully none of that will be necessary.  

Hope it all works out.

- Jay

aamdsi
Posts: 284
Joined: Apr 2014

But we are all here for you.  

Ask lots of questions from us and your Dr.s  

Hang in there.  

Laurie

foroughsh's picture
foroughsh
Posts: 775
Joined: Oct 2014



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Yesterday I wrote a very long reply to your post to explain the medical journey he'll have to get rid of that "C" and become a survivor but my browser crashed and I lost it!!! Today when I came back to type it I saw other members have already explained most of it. I really hope it's not cancer but even if it is, the good news is that it sounds to be contained, if it's proved after the pathology report comes up he'll have a very good chance to never have anything related to his cancer for the rest of his life.  

I was 36 when diagnosed 7 months ago. I remember how shocked I was from being a healthy athletic happy young woman this day to a cancer patient whose life is in danger the next day. So many questions come to the mind of a young cancer patient with almost no answer. I really don't know which side is easier to be in, the patient or the partner? But usually think it's more difficult to see the one you love in such a big trouble, so I thank God that it's me who is fighting and not my dear husband. I see how hard he tries to always make me happy and hopeful when I'm down- very hard job- so I think it will be very hard job for you too. Please don't panic, I know it's easier said than done, but please do your best, so he can feel free to do whatever he wants when he is sure you're so strong. Time will help and things get better, you'll never have the same normal life you had but you'll have a new normal life within few months and it won't be that bad that you might imagine now. Hopefully this cancer will leave him forever after the surgery.

Forough

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

But hopefully that means theyve caught it early. Let us know when you get the grade and stage. Good luck

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

Working in health care gives a different perspective. And it doesn't make it easier. Keep your faith in the system. It's the best we have. Good luck.

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

Hi and welcome. 

Just like you descibe, my husband had the same. Woke up in middle of night (early morning I guess). His pain was excruciating after urinating blood, we had to wake up our 8 year old daughter and rush to hospital with her in the car watching her daddy very very sick. 

Mamy of us here were literally tranformed in a one minute from a healthy person to one with cancer, to a family with cancer. That abruptness is hard for anyone but the unexpected nature for younger individuals must compound the shock. 

It is an experience we will be all be glad to talk about with you as you move forward. Many of us have a variety of different experience to share, but you will find support and knowledge here from all. 

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

Waking up in the middle of the night to pee and seeing the colour of the liquid I produced. Iwatched the red stream numb and helpless. Eventually it registered with my brain and thinking, "NooooH. This isnt right! This is soooooh wrong" Naturally I went back to bed and pretended nothing had happened. Its what we Brits do. I guess if I had my wits about me I would haave made a nice cup of tea.

Dave418's picture
Dave418
Posts: 95
Joined: Aug 2014

You've found the right place to get your mind right with people who went trough the same process your partner will be facing in the couple of month ahead. I was 37 when diagnosed last summer, we're too young for that, but who isn't? 

Feel free to ask any questions here, there's always someone with the answer!!

Dave

Jan4you's picture
Jan4you
Posts: 1317
Joined: Oct 2013

Well, ARnurse, glad you found us! You will find a wealth of support and information for you and your partner.

Yes, this is scary at first. But you won't go through this alone. We'll be here for you and him if he chooses to join us here as well.

Keep us informed ok hon?

Sending you positive thoughts, healing and good wishes for a full recovery.

Warmly, Jan

 

 

 

 

ARnurse's picture
ARnurse
Posts: 3
Joined: May 2015

Hey everyone,

 I can't thank you enough for your words of support and encouragement.  We got some news this past Friday: it is cancer. However, the contrast MRI showed that it was isolated to the one kidney.  So, we are staying positive and seeing the silver lining that it had not spread anywhere else, and the kidney was going to have to come out regardless.   SO RELIEVED.  I felt like I had been holding my breath all week. Just finding something out helped.  He is in good spirits.  We are both strong and we will make it through this.

  The surgery hasn't been scheduled yet but he has a cystoscopy tomorrow morning.  Any males have experience with this?  He is dreading it of course.  I know they give medication beforehand but I am wondering how painful/uncomfortable it is. 

 

Thanks again to all of you. 

M

icemantoo's picture
icemantoo
Posts: 3211
Joined: Jan 2010

ARnurse,

 

I can tell you from first hand experience that the cystoscopy is not fun. I wish I could say something cheerful about it, but I can not. Unfortunately its all part of the pre neph. workup. It is much, much less painful than the surgery and it is uncomfortable. One earlier poster referred to it as a Hubble telescope.

 

icemantoo

todd121's picture
todd121
Posts: 1425
Joined: Dec 2012

I didn't have one and the other guys I know close by here with RCC didn't have one. So why do some get it and some don't? Is this one of those "let's do it just in case" (sometimes otherwise known as doctor needs a new set of golf clubs....)?

Maybe I sound jaded.

I got sent for a consult to a cardiologist before my last surgery. I had no symptoms. No complaints. The cardiologist said "Why are you here?". I said, "You tell me?" Neither of us could figure it out. I think it was a CYA that cost me time and money so the surgeon had a little insurance.

I definitely sound jaded.

Anyways, ask. Maybe you don't have to have it. Sometimes a little push back or a few probing questions gets this kind of crap stopped. Sometimes with certain dr personalities it goes no where. Lol.

Todd

Ree_Maryland's picture
Ree_Maryland
Posts: 157
Joined: May 2014

MY husband had one in APRIL, a week later he had a fever so i took him to the hospital and they said he had a urnary trac infection caused by the  test , other than that he said after the cyst, we went home same day and he felt fine . hope this helps.

 

 

 

 

 

 

craig59
Posts: 14
Joined: Oct 2013

back in 2013 I didn't have one.  I live in SE Arkansas.

I do know that the ct guided biopsey is painfull.

Allochka's picture
Allochka
Posts: 865
Joined: Nov 2014

My boyfriend also didn't need any cystoscopy...

ARnurse's picture
ARnurse
Posts: 3
Joined: May 2015

Fellow Arkie indeed!  Cool

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