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Happy Birthday you have cancer

Trinityo88
Posts: 22
Joined: Jan 2018

yea, if you can tell by the title I was diagnosed on January 2nd which was my 43rd birthday.

Long story short I had a hysterectomy on Dec. 20th.  They did a CT scan on Jan. 2nd and informed me of a mass on my left Kidney.

I have now seen 2 urologists (didnt care for the first guy at all) and now waiting on a follow up appointment that is scheduled for Feb 8th.  They are going to do a cystescope on this visit to make sure all is well with my bladder.  From what I understand from my doctor this will also be my pre-op appointment. 

It is 2.3cm X 2.7cm and is a level 4 on the Bosniak scale so they told me it is a 90% + chance that it is cancer.

Now it is a waiting game.  They want to go ahead with the surgery but I do not have it scheduled yet. 

I am thankful they found it but also frustrated that I am now heading into another surgery after just having one. 

I was hoping to hear other peoples stories to try to lift my spirits because this whole thing is frustrating. 

icemantoo's picture
icemantoo
Posts: 3278
Joined: Jan 2010

Trinityo,

 

Didn't expect it to be a blessing, did you?

 

If you are going to have Kidney Cancer, You might as well have it discovered while it is small and curable. We all felt like S--- when we were told out of the blue that we had Kidney Cancer and they were going to yank out our kidney. I was nephed 15 1/2 years ago today. The shock will ware off. You will recover and there is no reason here why you will not lead a full life.

 

Icemantoo

Trinityo88
Posts: 22
Joined: Jan 2018

Oh I agree 100%.  I can honestly tell you it is a odd feeling being both thankful and frustrated at the same time.   Sometimes the frustration wins out and sometimes the thankfulness wins out.  To be honest at this point it is the waiting that is making me a little nuts.  This type of diagnosis is not easy on anyone but it is important to realize that when you are given this information that you put on your big person pants and do what you need to do to continue to live a good life. 

I won't deny wanting to stick my head in the sand and hit the ignore button a few times but I refuse to be that person. 

My wife told me we would wait a little longer to celebrate my birthday this year but there would be a celebrationi.  Now I just have to wait a little longer for it.   

stevez
Posts: 51
Joined: Dec 2017

Boy you described very well how we all think on this journey.  It's frustrating and it's definetly a roller coaster ride with plenty of "hurry up and wait".  Yours is small and caught early; that's the biggest thing to remember.  Mine wasn't on my birthday for sure, but surgery was a few days before Christmas.  A very different holiday for sure, but we made the best of it and actually had a good time in spite of the reason.  I felt better knowing it was out of me and I now just needed to heal.  Best of luck to you!

APny's picture
APny
Posts: 1987
Joined: Mar 2014

Mine was a Christmas present. Wish it came with a return receipt. I bet you do too. It was a little bigger than yours and I had a partial open nephrectomy. While not fun, it was not nearly as bad as I had feared. It really sucks that you're facing another surgery but hopefully that will be the end of it. If possible to do it robotically I hear that's easier on you than open so hopefully you can find someone who is experienced in robotic/lap surgery. If not possible because of location the open still won't be horrible. I was up walking the evening of surgery and home on the third day. All the best to you!

Trinityo88
Posts: 22
Joined: Jan 2018

As long as things go as they are supposed to the urologist I am seeing is one who does the robotic surgeries.  That is how my hysterectomy was done so hopefully I will be able to do this one that way too!

APny's picture
APny
Posts: 1987
Joined: Mar 2014

That's great! All the best.

Bay Area Guy's picture
Bay Area Guy
Posts: 449
Joined: Jun 2016

Mine was found on New Year's Eve in 2013.  I can tell you the celebrations were a tad muted.  At the time, mine was estiamted to be about 1.5cm.  The urologist said the standard of care was to wait and monitor, so for the next 2+ years, I had two CT scans and two ultrasounds, each about six months apart.  The last ultrasound in April, 2016 showed a slight increase in size, to an estimated 1.8cm, so the urologist recommended surgery (instead of ablation) given my relative youth (60 at the time) and excellent health (other than, of course, having cancer).  I had it out in June, 2016 through a robotic partial where it was found to be 1.7cm.

I understand the frustration of recovering from one operation only to need a second one.  But the alternative would be not finding the little bugger and having it be a lot more advanced when it was found.

donna_lee's picture
donna_lee
Posts: 963
Joined: Feb 2009

consider it serendipity that it was found early.  Of course, no one in a sane state of being wants tha D'x.  My internist said, "they can offer palliative care", saw an oncologist the next day and he said, "the size and likely mets to the liver would indicate 5-7 Months survival."  My first reaction was 'I don't want to die at Christmas time.'

11 1/2 years ago I saw surgeons at OHSU (Oregon) and had a very long and invasive surgery.  Here I am today, still having tests, still dealing with the emotional ups and downs of test times, still griping to the hospital when they fail to obtain the insurance pre-auth to have the expensive tests.  But I'm still alive, will be 75 next month, and get to see my family and friends.

Click on my user name for further details.

Sorry cancer has been discovered.  And You, too, can join the gutless wonder crew.  As I had also had a hysterectomy nearly 20 years prior to the cancer DX.

Best wishes and Hugs,

donna_lee

Trinityo88
Posts: 22
Joined: Jan 2018

I am very thankful they found it early and looks like something is going to be done about it soon. 

Sounds like you have been through a little bit of everything with all this.  Happy early birthday!  I hope you continue to be healthy!

 

 

kiwi68's picture
kiwi68
Posts: 110
Joined: Oct 2017

Hi, I was diagnosed in 28 September last year serendipitously and had nephron sparing surgery laproscopically on 9th November and fully recovered surgically 2 months later. Forget I even had to live through October and November.     No complications and I turned out to the 10% where it wasn't an RCC.  They can't tell till it is out and the pathology is done.  The benign kind can still grow and invade the kidney and destroy it so best off out.    Size was 2.2cm.  As others have said, best to find it early, hopefully they can save lots of your kidney depending on where it is and the surgeon.

Sorry that you have a 2nd surgery to deal with.     Even if it is an RCC the prognosis based on the size is very positive. 

Trinityo88
Posts: 22
Joined: Jan 2018

It wouldnt hurt my feelings to be in that category but only time and tests will tell. 

it is at the very bottom of my kidney so hopefully they will be able to take it and I will be able to keep the majority of my kidney. 

randyradiohill's picture
randyradiohill
Posts: 66
Joined: Aug 2017

I was officially diagnosed in September and had a partial neph at the end of October.  While recovering and trying to get my feet back under me my Mom died unexpectedly--of undiagnosed ovarian cancer.  I never told her I had cancer.  I had to buck up for the holidays and now that things are finally calming down I can try to figure out which to deal with first.  I've been very numb so now it's just take it one day at a time and look for bright spots as much as possible.

Wehavenotimeatall
Posts: 489
Joined: Aug 2017

you are going through the wringer at the minute

Sorry for the loss of your mom(RIP)

its a very hard thing to go through

Peace and love to you

Annie

Trinityo88
Posts: 22
Joined: Jan 2018

Dang Randy you have been through your fair share plus some.  I lost my mom nearly 11 years ago now and it is a kick in the gut every single day.  I also lost her to cancer which does not help my mindset with this new information about my own body.

Keeping your chin up is the not only the most important thing you can do but also the hardest.  I wish I had words of encouragement but I am not going to lie to you.  it sucks.  One day at a time is a good way to allow yourself to feel and deal. 

Good luck with everything and dont forget that it is important to take time for yourself.

Trucker1's picture
Trucker1
Posts: 82
Joined: Sep 2017

Randyradiohill-I had not seen any of your post around lately, now I know why..I was wondering about ya .I'm sorry to hear about your Mom, nothing easy about that or any of this for that matter....I'll be praying for you and every one else on here!! There is light at the end of the tunnel just can't get to it fast enough!!!

CHEERS!!!

KaliGrace917
Posts: 4
Joined: Jan 2018

The timing was definitely awful! However, like most folks here, it does seem like a blessing that it was found so early! I’m sure that your surgery, like the one before, will go smoothly and you’ll be up and running soon after. You got this!!

Canadian Sandy's picture
Canadian Sandy
Posts: 629
Joined: Jul 2016

My first ct scan for colon cancer showed a cyst on my kidney. Had to wait till this March to have it out as I was dealing with the colon. Not nice to have that on my shoulder the whole time. We’re stronger than we think. I’ve got my big girl pants on again. lol

Trinityo88
Posts: 22
Joined: Jan 2018

You know I agree with you that we are stronger than we think.  Very few people sail through life on calm seas.  The roughness that comes makes us stronger.  It makes us see what is inside of us.  Some days I may forget to put on my big girl pants and some days I wake up with them on.  Life helps us see our self worth.  Who we are and who we know we can become. 

Good luck with everything you are going through and just know if you forget to put those big girl pants on, you will find them again tomorrow.  They may be a little dusty or a little ripped but hey that just means they gained additional personality!

Trinityo88
Posts: 22
Joined: Jan 2018

One of the toughest parts of this for me is my moods.  I have no idea how to determine my moods.  I dont think I am normally a moody person but I think with the waiting game I am playing my moods are just all over the place.

It leads to trying to understand myself more then getting frustrated with myself because at 43 you would think I would already know myself. 

AnnissaP's picture
AnnissaP
Posts: 632
Joined: Sep 2017

The waiting game was the worst part for me. It all settled though once a surgery date was in place. Moods? Oh boy, where do I start? Lol. I am 3 months past surgery and once again had to go on sick leave (a few days ago). Some days I don't know whether I am comin or goin and don't even feel connected to this world. Don't be fooled. It isn't as easy as...you have cancer, let's take it out, go back to work. Life changes forever, BUT for the good!!! I have learned many lessons throughout this (very tough, but wouldn't change it for anything). Please, please, please be kind to yourself and as gentle as possible. I was warned and rushed things...now I have to take a step back. You can definitely do this, but accept all the help you can get because you want to continue moving forward (even if at a snail's pace). Welcome to the forum nobody wants to join!! I am sure you will receive great advice and help here! All the best to you!!!

Steve51
Posts: 23
Joined: Oct 2016

when I got my news. I don't post much here but I do read here always. I learned the term "the new normal" here. I can't believe I'm alive and well in 2018. The regulars that post are informative, honest, funny and a great support system. IF, you do have RCC, you are aloud to be afraid and you will learn to live with it. Focus on the things you love and think the glass is half full. TRY, not to feel sorry for yourself, it doesn't help. Search for the best doctor for you. Most cancer doctors really care about their patients. Best of luck to you

Trinityo88
Posts: 22
Joined: Jan 2018

You know, it isnt and never has really been my style to do the whole feeling sorry for my self thing.  My attitude is more like, well crap this sucks lets do what we have to do to fix it.  Don't get me wrong my mood swings could be what legends are made of (please keep my wife in your thoughts).  But I think a big part of that is my body still trying to heal from the hysterectomy and now finding out that I am fighting something else.  I am just so dang tired all the time. 

Don't get me wrong, there is a lot of fear involved with all this and the not knowing could make a sane person nuts and I am far from sane.  I certainly hope that come Thursday I will get more information and go ahead and get my surgery scheduled so I at least have a time frame in stone. 

shepp
Posts: 11
Joined: Aug 2017

I got my stage 4 diagnosis two days before my birthday last June. (I actually first found out online; someone had mistakenly posted my scan results.)

Now here I am eight months later, feeling better than I have in over a year and preparing to go on a two-week cruise through the Panama Canal. Take heart and try your best to live in the moment. It's not over till it's over.

Vivaldi
Posts: 27
Joined: Jun 2013

i found out I had a kidney tumour on Christmas Eve. Since both my father and grandfather died of kidney cancer, we were really not even thinking an oncocytoma was even possible. Six months later, after surgery and after pathology, I found out it was an oncocytoma.  I had an open partial, mine was on the top of my right kidney so not eligible for laparoscopic. I know 90% is a big number, but there are obviously those ten in a hundred who have a ten percenter. My sincere hope is that you get the same result. 

CRashster's picture
CRashster
Posts: 236
Joined: Mar 2017

I'd hate to see what you get for Christmas.

todd121's picture
todd121
Posts: 1427
Joined: Dec 2012

My tumor was found the week before Thanksgiving in 2012. I had my nephrectomy the week before my 51st birthday, and was home recovering on my birthday.

Hopefully they can do a laparascopic partial and you can keep most of your kidney, as long as they are sure they can get clean margins.

I wonder why some people they do that examination of the bladder and many/most people they don't? I've been wondering about that. For me, they took part of of the ureter and had it examined when they removed the kidney just to make sure it hadn't spread towards the bladder, but they didn't do an examination of the bladder. Does the CT not show what's going on with the bladder? Just curious why they are suspicious to take a closer look at the bladder. It's not one of the places that we hear of kidney cancer spreading next. There are some other cancers that occur in the kidney besides RCC that do spread that direction (or come from that direction).

Hopefully that is clear and you get your partial and you're done with it. I'd stick with follow ups for a long, long while. Don't let them sell you on 5 years clean and your done with RCC (if that's what it turns out to be...)

Best to you,

Todd

Trinityo88
Posts: 22
Joined: Jan 2018

I can't speak for others but the reason they did the camera in the bladder thing for me is because I continue to have blood in my urine and they are trying to find the cause. 

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