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Max57's picture
Max57
Posts: 170
Joined: Mar 2015

Let share our experience with others ....who did you find you have cancer? did you have any  symptoms ? what kind of treatment you had ? tell us how you feel? Do you worry about your future? Let's talk 

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

I had flank pain, primary said It was UTI, I insisted on having ultrasound, turned out to be a 10 cm grade two stage two RCC. I had nephrectomy two days after diagnosis, everything was in rush, I was shocked, I handled surgery very well hoping it wasn't cancerous, but three days later the primary pathology report proved it to be cancerous, I couldn't stop crying, imagined my self dead within few months, I felt pity for myself all the time, just wanted to sit in dark and cry, terrified monthes passed, All I did at my job was to google stage two recurrence rate, ... I couldn't concentrate on any aspect of my life other than cancer. Then I found this forum, a real help from heaven, after few months I finally accepted I couldn't handle it without the help of a therapist, I had three or four meetings with a fantastic therapist, then he helped me realize I put my life on hold for something no one can be sure it  would happen or not. I came back to the gym, what a wonderful decision, I began doing Yuga, took part in a dance class, accepted a new project at work, little by little I felt more hopeful, less cry and more smile, after 3 1/2 years I do remember my RCC every day, multiple times a day, but it doesn't make me stop living and enjoying every day of my remained life.

Forough

Max57's picture
Max57
Posts: 170
Joined: Mar 2015

Your story is wonderful and inspiring  

CarlosRosado's picture
CarlosRosado
Posts: 89
Joined: Dec 2017

 March  2017 :I had some disconfort on the right side of my body. No pain but like I have something stuck inside. I thought it was my liver so I checked with my gastro and after some test and he told me it was fatty liver. I did a diet for the next 7 months and everything was great.

 

Nov 2017: I developed , again some disconfort on my right side again and now with back pain on the same side. The pain was very bad , especially in my right shoulder. Again , tests, X ray, everything came back normal.... They told me I was a healthy person.

 

Dec 2017 : Went to Mexico for the holidays, my uncle is Doctor so I told him all my symtoms . He proposed to do a ultrasound. Again everything in order in my right side but now he checked my left side. He found a mass on my left kidney and he told me that as soon I go back to USA I need to take care of it. 

 

Jan 5 2018 : Visit my Doctor in the USA and he sent me to do a Ct scan that confirmed that I had a mass in the upper side of my left kidney  that looks RCC and it has to be remove ASAP.

 

Feb 12 2018 Surgery , Open partial nephectomy , The found a 4X4X4 cms mass Stage 1 grade 2, no major complications. The urologist was sure they removed all the Tumor + adrenal gland , all margins clear .

 

Now, this has been my journey , it has been very difficult for me and my family.  Suddenely I felt that my life was reduce to months now and I can not longer make  plans for the long term.

 

I am planning to see a therapist because I have fear of the future.

 

I have some very good days and some others very dark. This forum is a big help 

Max57's picture
Max57
Posts: 170
Joined: Mar 2015

You are a luck man ....my friend  you doing good hung in there...am sure more  friends going to shear there journey and a lot of them inspiring 

APny's picture
APny
Posts: 1994
Joined: Mar 2014

At airport lounge waiting for flight to Barbados at Christmas when I started peeing blood. Never had a UTI in my life so I thought what a time to get the first one. It was so bad that my husband requested our luggage back (yeah we had checked in) and took me to my PCP who sent me to a urologist. Urologist ordered a CT scan and put me on antibiotics in case it was a UTI. Needless to say it wasn't a UTI so met with Dr. Russo at Sloan Kettering who recommended a partial nephrectomy. That was four years ago this coming St. Patrick's day. Stage 1 but grade 3. So far so good but now we're monitoring two cysts on each kidney and a couple of tiny lung nodules. I do worry and everything has changed. I'm no longer "oh nothing will ever happen to me; I'm too healthy" but get anxious over every ache and pain. And I sweat every check up, especially now with these damn lung nodules.

Cinnamongirl's picture
Cinnamongirl
Posts: 199
Joined: Jan 2018

I had been sick off and on for about a couple of years. I had several symptoms..anxiety, night sweats, nausea etc but thought maybe I was pre menopausal. Got my first UTI. Went to the Dr received antibiotics they didnt work. Back to the Dr another round of meds still nothing. Finally in Nov of last year I found myself in the ER where they diagnosed me with the flu and sent me home. Two weeks later I was back and refused to leave until I had answers.

Did a cat scan and returned to tell me that I had a large mass on my kidney and that it would have to come out... I was like the mass and he said no the kidney, there is no way you are keeping that kidney!

On Dec 5th 2017 I had a radical nephrectomy removing a 13.3cm tumor.

Pathology.. stage T2b NX M0 grade 3

And here I am....just found out there is a suspicious "spot" on my remaining kidney 1.5cm. Currently waiting on referral for ablation. Super anxious but trying to remain positive!

icemantoo's picture
icemantoo
Posts: 3304
Joined: Jan 2010

t was a warm Spring Sunday afternoon in late April or  early May, 2002. It was time to  install a stone walkway in the back of the house. No sooner had I finished than I was yelling at Icewoman for pouring some, candy, syrup or food coloring in the toilet turning it red. I think she had done that a few weeks earlier as well. An hour or 2 later I noticed the food coloring had come from me. WTF. I called my PCP and he said it was probably nothing. I just broke a blood vessel from heavy working. No need to go to the ER, but come in his office on Monday. He referred me to a Uro for an appointment the next day. The Uro's questions as I remember focused on my plumbing. The Uro sent me for a CT scan which at the time I just thought was a CYA procedure. A few weeks until the CT and than I received a call from the receptionist at the Uro's  wanting me to set up an appointment and something about Kidney Cancer was blurted out. WTF.  Well the URO referred me to the new kid in the office who  had just completed a fellowship in Laproscopic Surgery. My vocabulary was starting to expand. I was lucky , it was relatively small tumor (2.6 cm pre-op, 4.2 cm post op.). They were going to yank my kidney out. Summer was starting and the big day was August 1, 2002. My wife took me to a B & B on the Canadian side of Lake Huron for July 4th weekend to relax. We went to a British Pub in town for dinner where they brought out all the traditional dinners for the diners to view. I almost gagged on being shown Kidney Pie.

The big day came. The surgery and recovery were no picnik. It took me almost 11 months for my 60th birthday to get back on water-skis. Five or 6  years later I got on some new fangled thing called the internet and started to tell my storey and tried to help others.  And that was how Kidney Cancer came into my life.

 

icemantoo

Wehavenotimeatall
Posts: 489
Joined: Aug 2017

had wierd pains for six months.. have small hiatus hernia ( prev diagnosed)So Gp spent six months treating that

then six months of not feeling right.. tired. Heart palpitations and then started to get pain under right rib

GP was still chasing Hernia

saw several other GPS, several visits to emergency room... all dismissed.

knew something wrong so demanded tests for stomach and gallbladder 

US for gallbladder found mass... devastation  as lost my husband to cancer.. ripped our family apart.. left to bring up my two sons who now fear losing their mother so I protect them as much as I can

when first diagnosed thought I would be dead in twelve months... then found this wonderful place.. my consulTANT IS GREAT  but here is better

LPN sept 17 ..  4 weeks after US ..not easy but not as difficult as I thought

4.4 cm mass chromophobe.. all contained.. Dr said operation was easy and smooth.. just had to pluck off mass.. said no spread and reduced chances of recurring

Now ... still struggling after operation.. get very tired and lots of pains.. back at work after five weeks but it is not easy.. dont think I will ever be the same

Fear is the worst as I have to hold it together mainly on my own

of course I feel lucky.. If nothing ever happens again this was as easy as what you want...

if it does happen again and I think about it MOST hours of the day.. I really don’t know what I am going to do..

that Saying about you might have cancer etc well at the minute it does have me

my heart goes out to all the young people here 

Thank you for asking 

Annie

 

 

Blessedx10
Posts: 5
Joined: Mar 2018

My symptoms started about a year ago. Sick all the time, constant pain in my left side. Each time I told the doctor, she said let's keep an eye on it. Fast forward December 14th 2017, I had the worse case of strep throat ever and went to the doctor. While I was there, I told her yet again, the pain is at its worst today. Apparently everytime I got sick the pain in my side flared more each time. She went back and forth about ordering test. She asked me what I thought. Well, you're the doctor, you tell me. She said well I don't think it's anything so we can keep an eye on it. A few minutes later, she said well it is year end and with deductibles I guess we can go ahead and order a test, but I don't see anything coming back. So there it started. First available appointment was December 19th. (my grandson's birthday) I went in for ultrasound that morning. They said I would have the results in two days, I had them in less than two hours. Let's skip to Friday December 22nd for second test, CT scan. I already knew what the outcome would be before they told me. It was positive. I cried, my husband cried and we told our kids and grandkids. The next two months would be the longest days of my life. Surgery scheduled for February 19th. I had everything in order for that just in case. I didn't think I would make it through surgery. I have to say I was disappointed when the surgeon told me that he was able to save 80% of my kidney. After long discussions about the location and size, he wasn't sure he could save it. (6.2cm around the collector valve) The pain and the recovery period is no joke. I was in the hospital for five days. My husband and daughter have been a blessing with everything they've done for me. I'm still slow moving and like others, worry about my future. Do I have one and for how long? I feel like this is my life sentence. Pathology report came back positive for clear cell renal carcinoma scale 2. Because of the location, my surgeon feels confident that he removed everything but because of the margin, he couldn't go past it. So with that being said, he tells me I require more testing and if it is past that margin, he will be doing a radical.  That six letter word has managed to turn my world upside down. People are amazed that I have been so positive throughout this process, little do they know it's breaking me down inside.

icemantoo's picture
icemantoo
Posts: 3304
Joined: Jan 2010

At 3 weeks the worst of your recovery is over. At 6.2 cm surprised they didn't do a radical. When I had mine 15 1/2 years ago it was all or nothing.

 

 

icemantoo

Blessedx10
Posts: 5
Joined: Mar 2018

silly question, at what point do you consider yourself cancer free?

APny's picture
APny
Posts: 1994
Joined: Mar 2014

As long as the tests keep coming back with no evidence of disease (NED) I consider myself cancer free. For now. I take nothing for granted.

Steve.Adam's picture
Steve.Adam
Posts: 460
Joined: Oct 2016

Hi Blessed and Welcome to the forum.

I joined this forum just over a year ago. I have seen that everyone's story is a little different and people cope with their situations a little differently.

But one thing everybody has in common is that initial shock.

May you always be blessed.

Steve.

Blessedx10
Posts: 5
Joined: Mar 2018

It's hard talking to someone that has no clue as to what you're going through. I hope this helps since we all have something in common.

Max57's picture
Max57
Posts: 170
Joined: Mar 2015

Yes you right this is one of the problem I faced with my family .....denial ....no one want to talke to me about my cancer it was removed and you cured. ..just like that I think they scared more than me ....this forum is mental saver that's why we should talk to each other let's write what happen to us what we going through  ...?

MirandaChe
Posts: 3
Joined: Mar 2018

In my case I found a "little ball" in my left side this August and I began to visit some medics and to do tomographies. I didn't feel pain, no blood pee, only tired and the tumor was growing fast. I didn't expected that it was cancer, I thought it's just a big cyst, so I was more o less relaxed (not now hehe.) But the result is 27x12x10 cancer, Grade 3, stage T2b and NX...

I'm still assuming this, and I think my family is in the same situation that Max57 ones, they don't want to talk about it and think that now I cured forever..

Max57's picture
Max57
Posts: 170
Joined: Mar 2015

Really  there is hundreds of us on the board only 9 friends  sheared there experience with us!!! We all need to know what you went through and how you where  sucessfuly able to cope we need each other come abroad and talk to us ...thank you 

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

I describe it as waking me in the middle of the night when I would roll to my left side.  Felt like I was rolling onto a tennis ball.  After a couple of weeks of that I went to my doc, she ordered an ultrasound, the beast was seen and then the CT's, etc.

I generally consider myself cancer free, until, like many people here, a strange ache or pain and then the anxiety sets in. 

Donna~

SkepticalRealist
Posts: 4
Joined: Mar 2018

I've just joined this site and it's the first time I've discussed my condition with anyone outside my family so please be patient and forgive some of my unconventional opinions. A few days before Christmas 2015 I had a heart attack that lasted 3 days ,but I thought it was just bad indegestion , so took myself to my local GP , and before I knew it I was being rushed to hospital in an ambulance. Over the next week or so they did all the test's and scan necessary to determine the extent of my heart problem , but it doing so they also found I had stage 4 renal cell cancer , presenting as a tumor on my kidney (approx 40%),but it had also spread to my lungs and bone. Up to this point I'd always considered myself reasonably healthy without any obvious symptoms apart from the odd runny nose and an intermittent cough now and then. I suspect that unlike most people my reaction was a little unusual , I wasn't shocked or scared , I just accepted that it was a natural part of the life process and I needed to face it and get on with living. Thanks to the therapies they put me on I've already extended my survival beyond the 18 months they gave me , but it comes at a price and untimately the current therapies available to me will become ineffective , so my mortality becomes a recurring issue , intruding into my thoughts at the oddest times , but particularly when I'm having a bad day suffering the side-effects of my medications. Thanks to the love and care provided by my family I find my situation managable , but I worry about the stress and worry I'm putting them through when they see me at my worst , struggling to do the most basic things. Now my thinking is that quality of life is more important than quantity , and I intend to enjoy whatever time I have left making new memories with my family while I can , even if that means foregoing some of the treatments available to me if the success rate is low and the toxic side-effects debilitating . Ultimately death awaits me , but I don't fear it because I know there is so much more beyond this mortal life , and I look forward to the peace and quiet that awaits me as I continue along the path of discovery in the next life.

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

Skeptical realist

You're attitude is very strong, I love to finally be able to have such attitude,  you're in my thoughts and prayers. Tell us more about how you reached such attitude please

Wehavenotimeatall
Posts: 489
Joined: Aug 2017

you have had a very tough run

i find it very hard to read your story as I know I could never be as strong and positive as you

and that says so much about you

i wish you the best and hope we can assist you here at any time of day or night

there are some amazing people here

Annie

APny's picture
APny
Posts: 1994
Joined: Mar 2014

Sketical Realist, you have a wonderful attitude. May the treatment continue to be effective and if not, alternative means found that will work with minimum side effects. All the very best to you.

marosa's picture
marosa
Posts: 333
Joined: Feb 2015

I admire you and wish you well every possible way. Yes life is full of surprises.  In my case I confused all the signs my body and mind were giving me.  Anxiety and pending doom I believed was due to my long history of panic attacks mixed with empty nest syndrome, menopause, moving from France back to my country after having left 25 years ago and my husbands difficulty getting used to retirement and living for the firts time abroad.  The pain in my back was nothing new as I did a lot of aerobics in the 80's on hard surfaces and also have a little scoliosis.  Night sweats were weird because I was on hormone therapy and I was frequently wondering if getting close to 60 was a reason one got tired very easely.  Everyone kind of made fun about my panic... cut to a complete check up I decided on having on July 2014.  An ultra sound detected a mass and the rest is in my bio.   I was very scared and waiting for the op I used to walk the streets thinking I was already in another dimension or planet.  But I didn't break in pieces.  I don't think of it every single day and not always with the same intensity or fear but it is there and I have more or less learned to live with this.  I want to enjoy my life, worrying will only lessen my joy so I do the best I can.   I come here less often than years before due to the same reasons but I do come and I post here and there.  Will never forget how important this network was for me.  And while I care for all because we share all so much, there are some very special people here that have become inmensely dear to my heart.   May you all be well

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

I had a horrible kidney infection and for 1 yr after kept having the same symptoms. I had a couple of ultrasounds bc during that time they found a cyst. Last August they actually ended up seeing the tumor during the routine ultrasound. I had been completely and utterly exhausted since last June until my surgery in November. To the point all I did was sleep and all of my muscles were burning and weak when I was up and awake. I also had a weird pinching pain in my side/kidney area for about 1 yr prior to the tumor being found.

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