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struggling

59beth
Posts: 3
Joined: Feb 2014

Hi. hope this is ok to share. Ive been reeding this forum since being diagnosed just over 2 years ago. Three years ago had a bowel resection and because i still had problems they did ct scan and found tumor in kidney. They found that the tumor was allready there 2 years previosly but it was missed. Had an open nephrectomy and allthough they cant say cure it was as near as possible to it. Last sept normal ct scan done and they suspected there was a problem and ordered another one. it turned out it was a growth but my results were not sent back to surgeon due to shortage of secretarys and other reasons or so i was informed. i stupidly thought all was fine. I never seemed to get over nephrectomy and took absess and readmitted to hospital. Inow know there is tumor on adrenal gland of remain**** kidney and after six weeks since lnforming me ive got an appointment to see surgoen tomorrow. I just feel so upset and alone and according to internet research i dont have much chance or hope. I m sorry to go on so much and i know nobody can really do anything but thank you so much to anybody who has read this.            beth

Jojo61's picture
Jojo61
Posts: 416
Joined: Oct 2013

Hi Beth,

I am so sorry that you have continuous struggles with your kidneys. I am glad you reached out here. But one thing I have learned on this forum is never give up - and don't rely on the statistics you have found on the internet. A lot of them are outdated. They have come leaps and bounds in regards to alternate meds for RCC. Yes, you have another challenge ahead of you. But you reached out here and that tells me that you have some fight in you. So when you go to the surgeon's appointment tomorrow, bring someone with you, so that someone else can hear the information. Also, write down any questions you might have ahead of time, so that you won't forget to ask anything. Have the other person write down the surgeon's answers. That way you can fully absorb the informaton.

So take some deep breaths (after having some tears) and give yourself a little pep talk. You can do this. We are here to help you through it!

Hugs,

Jojo

NanoSecond's picture
NanoSecond
Posts: 554
Joined: Oct 2012

WRONG.

I am very sorry to read what you have been going through Beth.

I would like to suggest that you arrange to meet with an oncologist who has expertise in renal cancer ASAP.  Your surgeon is not the person to guide your future steps.  If your RCC has metastasized to your adrenal gland you now need to find an expert RCC oncologist.  And he/she can do plenty for you.

I would also like to suggest you register at:  www.SmartPatients.com

There is a wealth of information available there from both patients and caregivers.  In particular they will be able to suggest the nearest RCC expert in your vicinity.

Don't dispair.  Go to the experts and be amazed.

NewDay's picture
NewDay
Posts: 175
Joined: May 2012

Hi Beth,

Welcome to the forum, though you have actually been visiting here longer than me.  Please don't give up so quickly.  I know what it is to walk out of a doctor's office feeling hopeless and helpless, but YOU ARE NEITHER.  I agree with NanoSecond that you need to see an RCC specialist before making any judgements.  There are many new therapies and trials today.  Hang in there.

Kathy

Darron's picture
Darron
Posts: 224
Joined: Jun 2013

Boy, I hate to hear about RCC spreading. I can relate, as I was diagnosed in Oct 2012 and had a radical on my right kidney that included my right adrenal. When I went to an oncologist after surgery, he saw another tumor on the other adrenal gland that the surgeon never saw! Sounds familiar to you, huh?

I also had mets to my lungs.

I started a drug trial of Sutent combined with Nivolumab In Feb, 2013.

My last scan on January 2, 2014 showed no evidence of disease. Please read my bio and send me an e-mail thru the CSN network if you would like more information Or support. Taking out my adrenal gland over a year ago was option #3 for me. I still have a healthy, functioning adrenal gland!

DO NOT READ INTERNET STATISTICS. To have 5 years of data, you can only evaluate drugs that are 5 years old. neither drug took existed outside of trials 5years ago.

Keep your chin up and start the fight, your fate is in your hands. You are not an internet statistic!

Be well. And start thinking positive thoughts.

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

Hi Beth,

We have many members here whose expiration date according to the internet is long passed. Bottom line, there are therapies available today that weren't yet invented when the old numbers on RCC were published and more are in the works. Follow Neil's advice, find an oncologist experienced with RCC, you have a lot of living left to do.

Godspeed,

Gary

T1ffanyz's picture
T1ffanyz
Posts: 41
Joined: Aug 2013

My first move would be to leave that incompetant drs office and look into a malpractice lawyer after you fine a new dr an dust u on a good path to fighting this. I think Nano gave you great advice. just bc one gave you bad news doesn't mean there isn't someone out there smarter and better with new treatment options to help you. Stay positive. 

 

 

59beth
Posts: 3
Joined: Feb 2014

thank you so much for all your replys i would liike to come back later and add some more. Right now im so emotional at people answering me and trying to help. Maybe i need to stop feeling sorry for myself and remember that there is other people that have more problems than me.        beth

foxhd's picture
foxhd
Posts: 1953
Joined: Oct 2011

Not that yours are old. But now you become more self guided and selectively chose the care you need. It is very encouraging the gains made in kidney cancer treatment. The reward can be substantial. I've gone from poor prognosis to good prognosis because of finding a new effective doctor and the options she was able to give to me that others could not. Time to take charge Beth.

And by the way, we've all been through this. Listen to the advice you've been given.

danbren2's picture
danbren2
Posts: 193
Joined: May 2013

Beth,

     I have been through 3 surgeries in 1 year, and I am waking up everyday with a smile on my face! This is your support center right here, so many have been through so much and have endured and are now able to help us with the meds they have been given.  I totally agree, find an RCC oncologists, be strong, and come here as often as you need, we will always be here to cheer you, a shoulder to lean on, and to boost your strength! Hang in there!

                                          Love and prayers for good health!

                                           Brenda

59beth
Posts: 3
Joined: Feb 2014

its getting near midnight here and and thinking about my appointment tomorrow. You have all made me a lot calmer with your encouragement. I have written down a few questions for surgeon and my husband will be going with me. He is a total support to me but its so hard to try and not keep talking about it. Its so good to speak to someone else. I had two other appointments last Thursday. One was with the surgeon whe did my bowel resection and he is so caring and was totally shocked they found another tumor. The other one was a follow up to gall bladder investigation. He was so nice too and when i explained about the adrenal gland problem and results gone missing he was not to happy. I thought he would put gall bladder problem on hold but unfortunately he said it needs to come out so ive got that to deal with also. [its all a bit of a mess really] He checked my notes on computer and was able to tell me the tumour had grown. He was going to write to surgeon im seeing tomorrow to discuss what treatment he is planning. These two men were lovely compared to the uroligist i had been seeing. I know its a different one im seeing tomorrow but i am really scared and just hope he is a bit nicer. Sorry for the long post and really hope ive not went on to much. It is so good to feel people understand and be able to say how i feel.         thank you         beth

NanoSecond's picture
NanoSecond
Posts: 554
Joined: Oct 2012

Beth.  I know this all must seem totally overwhelming.

But please do not agree to any further surgery unless and until you have consulted with an oncologist who is a renal cancer expert.  You do not want to have to lose that adrenal gland if you can avoid it.

Darron's picture
Darron
Posts: 224
Joined: Jun 2013

Removing my adrenal was option #3 because my doctor felt that without an adrenal gland, I would most likely not be a candidate for IL-2 if I ever needed it. Currently, it is the only FDA approved drug that has a history if durable CURE. You do not want to take that option off the table if at all possible. Please discuss that with your RCC specialist.

 

Srashedb
Posts: 201
Joined: Dec 2013

Beth:

you have been given strong thoughts and suggestions by folks on this board who know this disease.

My husband has this disease and I can tell you that there is a BIG difference when doctors who are experienced treat you and not every surgeon, oncologist is experienced.

I don't know where you live but even if you need to travel, it is imperative that you seeknexperienced doctors.

Sarah

Jojo61's picture
Jojo61
Posts: 416
Joined: Oct 2013

Hi Beth,

I am so glad your husband is going with you. Please ask to be referred to an oncologist tomorrow. And keep us posted on what happened! Take care.

zugs,

Jojo

angec's picture
angec
Posts: 626
Joined: Mar 2012

Beth, you are going to do just fine! Don't go by what you read on the internet. That information is as old as the hills. There are at least 7 new drugs to treat RCC in the last few years. They are very effective! As you have read the posts here by Fox.. He was first told he had months to live. Several years down the road he is alive and kicking and may even be cured with his latest treatment of IL-2.  In addition, if you only have the one on the gland now and they choose to remove it, then it is out.

 

Do you have copies of your path report? In the future, in case you have not done so already, get copies of all reports on every single test that is done from here on in!  Very important. Don't wait to hear from the doctor when you take a test, if you don't hear in a week or so then start to call for copies of the reports. These days it seems you can't count on them to call you, or their secretaries to do the right thing. Also, i would also take the advice that was given to look into malpractice for the tumor missed two years ago along with not being notified about the new tumor.  Two strikes is enough!  I hope you find a good oncologist and be sure to get a whole body pet/ct scan at least every three months or so to continue to monitor.  

Keep your chin up. The people here are survivors. RCC is now a treatable chronic disease.  New drugs coming out all the time. Who says there is nothing that can be done for you?  That is totally not true!  All the best for you!  keep positive and come here to vent all you want.

xxoo

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