CSN Login
Members Online: 12

Advice please

Karen0074's picture
Karen0074
Posts: 60
Joined: Apr 2014

Hello everyone, I have been reading your supportive and valuable advice to other members for a few days now so have joined in the hope that you can help me understand what is happening to me at the moment. A quick background:

Had a us 2 years ago as I was getting pain under my front ribs left side, result came back normal although I peaked at my medical notes in Dec 13 and there was actually an angiomalipoma measuring 1cm on the left pole of my left kidney.  Since that us I have been back and fore to my gp with the same pain but it was put down to muscular pain after blood tests were normal. I went back to my gp in Jan 14 with right sided rib pain so she arranged another us to check my gallbladder. I thought I would ask about the angiomalipoma as I was concerned about it and that I had had no follow ups. The radiologist noticed the lipoma and recommended a CT scan. I had the scan last Thursday and my gp called with the results to say that the properties of the lipoma had changed it now measures 1.2 cm by 1.9 cm no lymph node involvement and suspicious of primary malignancy.

So I am now waiting for an urgent appointment with a urologist which could take a few weeks. I have just turned 40 and have two lovely kids a very supportive husband and sister but I am feeling a bit scared and have never met anyone with experience of this. Does anyone have any info or advice.

 

Karen

icemantoo's picture
icemantoo
Posts: 1654
Joined: Jan 2010

Dear Karen,

 

All of is on this board have faced a diagnosis of Kidney Cancer or possible Kidney Cancer as a patient or relative. When you meet with the Urologist he (usually all men in this field) will be able to tell you what you are facing. Sometimes the CT is not 100% conclusive.

 

The good news is that even if it is Kidney Cancer at 1.9cm it is a close to 100% curable as it could be with surgery alone.

Being scared is normal. I sure was when I was diagnosed at age 59 almost 12 years ago. So was Faye across the street who was diagnosed at age 64. She is 84 now and still walks Ernie everyday, rain or shine, because her husband can not walk very well..

We both as well as almost everyone on this board had the surgery. Not fun,  but an easy choice to get rid of the tumor.

In my day everyone had a nepherectomy (removal of the Kidney). Now a they are doing partial nephs and procedures  for very small tumors.

The fear will pass as well as any necessary surgery. Your summer will be a little slower, byt everything should be fine.

My surgery was on August 1, 2002. The following June as part of a gathering for my 60th birthday, I went water skiiing. Because you are much younger I expect you will be able to do much more. Just not this summer.

After you meet with the Urologist come back on with the details and we will be able to help you thru it.

 

Icemantoo

 

icemantoo's picture
icemantoo
Posts: 1654
Joined: Jan 2010

Karen,

 

Make sure the Urologist you are seeing specializes in Kidney Cancer otherwise you will have to see another Urologist. In a large Urology practice a few usually practice in this field. It is mostly the younger guys who are being trained in this specialty, not the ones with  the 40 years experience.

 

Icemantoo

Karen0074's picture
Karen0074
Posts: 60
Joined: Apr 2014

Hi icemantoo

 

thank you for your lovely reply, I have checked out the urologist that I am on the list to see. He does indeed specialise in urological cancer. I am hoping to have a appointment next week or week after and will come back and update. Thanks again for reply I feel so much better now I have joined this group. 

 

I am  so encouraged by your story and so glad to hear your are fit and health 12 years on, not sure I'll be water skiing though I'm not brave enough. But who knows!  

 

karen

GSRon's picture
GSRon
Posts: 1306
Joined: Jan 2013

Hi Karen.. the Ice Guy is spot on...  Actually it may not be Cancer... rare but it has happened...  I think we had two folks here last year that ended up not being Cancer.  Still depending on where it is, time to get it cut out.  Rarely is a biopsy done.. so if your doctor suggests a biopsy, ask why..?  If he does not give a good answer, then RUN to the next doctor more versed on Kidney Cancer.  See, if it is Cancer it needs to be treated anyway... and if it is not Cancer and it is causing issues, it still needs to be treated.  So, either way, no need to biopsy..  they can do all the cutting, slicing, and dicing on that bugger once it is out of you...  I am sure someone will correct me if I am wrong...

Hang in there.. the surgey is not as bad as  you fear.. trust us on that one..!  Just make sure you have the right doctor and surgeon.. I can not emphasise how important that is in the scheme of things...

Good Luck..!

Ron

twinthings's picture
twinthings
Posts: 403
Joined: Jun 2013

Hi Karen!  Nice to meet you but sorry for the circumstances. 

I know what you are going thru and how scared you must be.  I truly believe that waiting is the hardest part of this whole coaster ride you are on.  At least, it was for me. 

When I first came here, to this site, and people would say, "oh, but your tumor is so small, it's likely 100% cure with surgery", it would literally piss me off...just keeping it honest here.  To me, it didn't matter if it were microscopic, it was cancer.  And, once you hear the word cancer, you can't unhear it.  Nor will another day pass without me thinking about having had cancer and wondering when it will rear it's ugly head again. 

I was scheduled to wait several weeks to see a urologist, following an incidental finding of a 4.7cm "probable renal cell carcinoma" tumor on and in, my right kidney.  I called every doctor within many miles trying to find someone who could see me sooner.  Just so happens, I have friends in high places that could pull some strings and get me seen immediately.  Before I knew it, I was in the hospital having a radical nephrectomy.  My small tumor just so happened to be growing directly over a vein, making it even more dangerous.  So, size doesn't always matter.  Location, location, location. 

The best advice I can offer is to get your medical records.  Every single time you have bloodwork or scans, ultrasound, x-ray, MRI, whatever the case may be.  It's so important!  In fact, it's how I learned I had "probable renal cell carcinoma".  Do not rely on your medical staff to tell you everything that's included in your reports.  History has proven time and time again that, more likely than not, I learn something from looking at my records myself, that the doctor failed to share with me.  I know that the general concensus is, if it were important, the doctor would have said something.  I couldn't disagree more.  My health will never be as important to any doctor as it is to ME!  If I have an enlarged lymph node in my lungs, by God, I want to know about it.  If it causes me undo stress, so be it.  But, I know I will not drop the ball on myself...I will make sure it gets followed and closely watched.  For once in my life, I have made myself numero uno. 

I am less than a year into this and already, I can say, this has had a positive impact on my life.  Never in a million years would I have believed those words would come out of my mouth, but, it's true.  This will make me sound like a looney, but I really thought I was going to die.  I went so far as to give things away.  From the minute I suspected I had cancer, I thought my days were numbered.  Then, I found this site.  I wish I had found it sooner, before my surgery.  I attribute ALL of my change to my fellow survivors on this forum.  I have gained an inner strength I never knew I was capable of. 

I am glad to hear you have a great support system.  Lean on them.  Talk to them.  Talk to us.  Learn as much as you can because knowledge is power.  In the event you have kidney cancer, it may very well change your life but it's not likely to take your life.  I've always heard the old saying, 'what doesn't kill us makes us stronger', but never really got it until this experience.  I am most definitely a stronger woman today than I was this time last year.  Physically and emotionally.  Kidney cancer took alot from me and out of me but it also gave back.  It gave me a new found appreciation for life, love and happiness.  It's encouraged me to live a healthier lifestyle and It brought me closer to God.  So, all in all, I can't really complain.  And, because I've had cancer, I am guaranteed scans every 3-6 months, for atleast the next few years.  So, should anything else arise (like an enlarged lymph node) it will likely be caught early. 

So, hard as it may be right now, try not to freak out too much.  Put all of your energy in to learning all you can and be proactive in your treatment.  Look for the postives.  There are many, you just can't see them...yet!

Keep your chin up and keep us posted.

Sindy 

Karen0074's picture
Karen0074
Posts: 60
Joined: Apr 2014

Ron that was exactly what I was going to ask that there is something in my kidney I don't need to know for sure what it is I just want it gone, and then the drs can tell me exactly what it was after. Why waste time with a biopsy something I will definately bring up. It might not be cancer but all my worried mind is telling me that it is.

Sindy, what you have written is exactly what I'm thinking. It is a scary word and once it's associated with you I thought that's it. Every ache and pain in the future I will be worried about. I would hope that I will be given regular screening if not on the NHS here in the UK. Then I will pay for it privately.

my sister told me about this site, I'm so glad she did I'm looking forward to asking you guys so much and getting and offering support as much as I can.

 

Karen

icemantoo's picture
icemantoo
Posts: 1654
Joined: Jan 2010

I no doubt was one of those who pissed Sindy off by telling her that the cure rate for her tumor size was near 100% from the surgery alone. She had enough to deal with hearing the big C word during what was an otherwise normally healthy life. Should I have said that over 40% develope other issues even thogh she was not in that 40%?. I think not.

The point is that we all come on this board scared and pissed off. One newbie left right away when we called our group a club after and each member was initiated by  having surgery thinking we were making a joke of it.

I as well as others read as much as we can about the responder's situation and other posts. I try to be helpful and accirate. Sometimes I get it a little wrong and wish I had not written something I had written.

 

I hope that we can all think and write responsibly even though it may not always  be taken as positive and some may be offended where no offence was intended.

 

As you all know I have stayed away from politics lately which did piss people off and vice versa.

 

 

 

Icemantoo

angec's picture
angec
Posts: 664
Joined: Mar 2012

Ice... I can assure you that when i came to the boards to ask about my mom's kidney tumor, I was happy to hear about the chance of a cure for the small size. Unfortunately, hers' grew quickly and had already spread, so no cure. But, you made me feel better about the whole situation. You also told me that there were plenty of medicines that can keep her stable until the cure comes, and she is stable.  You were absolutely forth coming in giving advice (that most posters ask for) and there was nothing wrong with what you said. Sometimes people go through cancer and never want to hear the word again, once they are cured. But you stick around here and time after time, help others feel better and you make it less scary for them.    I appreciate all you do and I am sure Sindy and the others do as well.  I should also apologize then because I might also be one who would let others know that such a small size can be a cure, it is possible. But it does depend also on the location and the grade/type.  So, keep up the good work and continue to be there for everyone as you always are! Thank you!

 

Sindy that was an excellent way to express yourself. I think you should copy and paste that each time a newbie comes by.  It says it all! And I love the picture.. Who is that adorable little one?

 I have learned that even if i go for a blood test to always, always get copies of reports when tests are done.  I have had doctors tell me everything was ok because it was nothing to do with their area of expertise.  I had a stone on my kidney and the report was sent to the gyno and he failed to tell me. Why? Because it meant nothing to him since he was checking the ovaries.  Then when i went to urologist i had water on the kidneys and he didn't tell me, he said it was not important because i had no blockage.  When i got the report and saw that, i had a word with him. And he said, "this is the reason why i don't give my patients copies of their reports."  I have a right to know what goes on in my own body! Just like i have a right to my own credit score without having to pay a company for it.. why do they have it?  Side point!  LOL

Angiolympomias have to be monitored just like any cyst or tumor. I would get back to that doctor and find out why he didn't tell you about it or bother to check it. Doctors like that need to have their license removed, in my opinion.  Glad you are having it checked out, keep a close eye on it.  The best thing is to have it removed if possible.  You will be ok.  All the best to you!

twinthings's picture
twinthings
Posts: 403
Joined: Jun 2013

Thanks, angec!  That adorable little boy is my one and only grandchild.  He's 2, his name is Cooper and he is the bomb.com! 

I'm glad to hear your mom is stable.  May she continue to be stable for many years to come!  Having lost both parents to cancer, I can imagine how hard this has been on you.  Don't forget to take care of yourself. 

 

Sindy

angec's picture
angec
Posts: 664
Joined: Mar 2012

Sindy, that little Cooper sure is da bomb! I want to squeeze him up!  Please shower that little face with kisses for me.... <3  Thanks about your well wishes for mom. I hope so too! Sorry about your loss!  Sending big hugs to you... be well!  XXOO

 

twinthings's picture
twinthings
Posts: 403
Joined: Jun 2013

Iceman, there isn't a single person on this forum, that owes me an apology.  If you took what I said personally, well, that's too bad.  I wasn't directing my comment to you.  I have always been very appreciative of advice, good or bad.  Just the fact that someone reached out to comfort me during a very scary time meant more to me than what they said.  You were indeed one of those people who reached out to me, and I will always be grateful.  

Just because I said I got pissed off when people would tell me my tumor was so small it was likely 100% curable, doesn't mean I was justified in feeling that way.  Feelings don't have to be justified tho...we can't help how we feel.  Maybe you can, but I can not.  Many years ago, at four and a half months pregnant, I lost my baby.  I can't tell you how many people told me it would be OK, that I was young and would have other babies.  As tho other babies would lessen the pain of the one I lost.  And no, it wasn't OK.  It's never OK to lose a baby, no matter the (gestational) age.  Yep, you probably guessed, it pissed me off.  Everytime I heard it.  I think each person who said that to me thought they were comforting me.  Each one of them had good intentions.  But, whether justified or not, I was livid each and every single time I heard those words. 

My point with all this is that, even tho you offer advice with the best of intentions, you can't make someone hear your words the way in which they were intended.  And just because that statement is offensive to me doesn't mean it offends others.  I would venture to guess most people would find comfort in those words.  I am not like most people...clearly.  So, I make no apologies for how I feel nor should you apologize for your well intended words.

Keep doing what you do, Iceman.  I (almost) always value what you say Wink

 

icemantoo's picture
icemantoo
Posts: 1654
Joined: Jan 2010

Sindy,

No need to explain. Everything is OK. Your little grandson is a so cute. Tommorow my oldest grand child, Ilana becomes an adult (18) and she will be able to vote (in Maryland).    

Today my  son  turned 45.  Boy how time flies.

 

Icemantoo

twinthings's picture
twinthings
Posts: 403
Joined: Jun 2013

I pray I live to see Cooper turn 18 and my twins turn 45.  What joy you must have in your heart! 

Happy Easter, Iceman!

icemantoo's picture
icemantoo
Posts: 1654
Joined: Jan 2010

Happy Easter to Sindy and everyone else as well as Happy Passover to all of my Jewish brethern,

May everyone have a happy and healthy holiday and future ahead and may we all have the best health possible for not only this year but years to come.

Icemantoo

PS As the grandchildren get older sometimes they do not have as much time for us as when they were younger.

a_oaklee
Posts: 176
Joined: Nov 2013

Hi Karen, 

I just want to say I'm sorry for all you are going through right now, and I'm very glad you found this site.  I wish I could offer more helpful information, but those members who have already written have eloquently covered anything I had to offer.

Twinthings:  I am so impressed with the knowledge you shared and the way you expressed yourself.  I think you have a gift of expression and the ability (obviously) to help others. 

Iceman:  I think that you always take the time to welcome the newbies, and I appreciate your style of calm reassurance.  (and you've done a fantastic job of not bringing up politics)  Keep up the good work.

Annie

Karen0074's picture
Karen0074
Posts: 60
Joined: Apr 2014

Thank you, all of you, for the warm welcome. I can understand how Sindy felt in the begining you are so worried and it's lovely that people are telling you that you can be cured 100% but they can not guarantee that and it only makes your worry even more. Cancer is the most horrible word, and at the start of your diagnosis all you can think about is death. As you go on im sure it gets easier but right now I'm scared. I appreciate all comments from everyone good or bad so keep them comming! Also since I have joined this group I am feeling so much better so thank you x

APny's picture
APny
Posts: 283
Joined: Mar 2014

Sindy, you have articlulated so perfectly what I, and I’m sure many of us, are thinking. Hearing that word just changes your life forever. Thank you and bless you for your incredible empathy.

 

Karen, I too was and am scared but I do try to be optimistic that surgery can remove all of it. Is there a chance for recurrence, of course, and as Sindy said, that thought will always be with me. But I try to take comfort from the fact that they got it early. No guarantees, but the odds are in our favor when they get it early. I think that’s what Iceman is trying to say too. That our chances are better than if it had been discovered much later. Best of luck to you; the surgery isn’t fun but not as horrible as I had feared either.

 

Jojo61's picture
Jojo61
Posts: 477
Joined: Oct 2013

Welcome to our forum, Karen!

I was also scared when first diagnosed in October. But this forum has helped me realize that RCC ican be looked at as more of a chronic disease.  Treatment has come leaps and bounds in the past couple of years. In October, the urologist told me that if I was stage IV, I was "done" - that there was no treatment. I am still stunned that this young doctor had this outdated information and attitude! Luckily, this young urologist had the good sense to refer me to a superstar uro-oncologist who gave me great care. I also was lucky to be stage III. My kidney (and 13 cm tumor I named "Arnold") was removed and the follow up scan gave me an all clear.

I am glad you found this great source of support and knowledge. This wonderful group of people will help you through whatever comes your way!

And, as Sindy said, it can change your outlook on life. You appreciate the good things so much more. (Great new pic, Sindy! What a cutie beside you!)

Hugs and smiles

Jojo

 

GSRon's picture
GSRon
Posts: 1306
Joined: Jan 2013

Yes we are all scared... does not matter if you are a patient or caregiver..  the fear cuts deep.  We do try to keep in a bit light around here... this does not "work" for everyone.  There is another site called Smart Patients, they keep in very dry and to the point.  Both have their medits for sure..!  Yes we make jokes at times.. but always show compassion and sympathy when needed.  And sometimes we all need a polite kick in the back side too.  It is easy to be negative and in a very bad mental state... this does not help anything... so at least a few of us try to lift our spirits..   I know it is difficult.. just try to keep looking forward..    Every day has some sunshine in it... well it does for me...  I do not know what I would do without the people around here... they all help me every day..!

Ron

twinthings's picture
twinthings
Posts: 403
Joined: Jun 2013

APny, thank you!  You are very kind.  I hope you're feeling great and having a wonderful Easter weekend with family and friends.

 

Sindy

APny's picture
APny
Posts: 283
Joined: Mar 2014

Hope your Easter weekend is joyous as well Smile BTW, I thought that was you son in the picture. I would never have guessed grandson. You look fabulous.

twinthings's picture
twinthings
Posts: 403
Joined: Jun 2013

Why, thank you APny, thank you very much!  I'm turning 50 in June so, you just made this old lady's day!!!!!

icemantoo's picture
icemantoo
Posts: 1654
Joined: Jan 2010

Sindy,

 

As I said on my post "Turning 70 and Kidney Cancer",  "50 year old women look a hell of a lot better than they did 50 years ago".  And that applies to you as well.

 

Icemantoo

twinthings's picture
twinthings
Posts: 403
Joined: Jun 2013

Thank you, Icemantoo! 

It really just recently hit me that, the road in my rearview mirror is longer than the road ahead of me.  Probably normal to feel this way when one turns 50, regardless of one's health. 

ConnieSW's picture
ConnieSW
Posts: 623
Joined: Jun 2012

was bothering me a bit because I was looking at the road thing.  Then I went to work and had a patient who was turning 100.  She was a wonderful woman who looked a good 25 years younger and acted ageless.  I felt like she was a contemporary.  Changed my attitude entirely

APny's picture
APny
Posts: 283
Joined: Mar 2014

Fifty will sound like a young whipper snapper Wink

twinthings's picture
twinthings
Posts: 403
Joined: Jun 2013

Hi Connie,

Turning 50 isn't bothering me in the least bit.  I have always been grateful for every year, no matter the age.  If I struggled (only slightly) with any of my b-days it seems to be the last year of every decade, ie, 29, 39 and now, 49.  And only because it's the end of my 20's, 30's and now, 40's.  I will never be 40 something again.  Having said that, I relish the idea of being 50 something, for the next 10 years.

Isn't it nice tho, to meet someone who can have such a profound effect on you?  She sounds like a wonderul woman.

 

APny, I'm looking forward to it Smile

 

 

 

twinthings's picture
twinthings
Posts: 403
Joined: Jun 2013

Thank you for the kind words, Annie, but you give me too much credit.  I am very expressive but most people don't see it as a gift, just an annoyance. 

Happy Easter!

 

Sindy

rainsandpours's picture
rainsandpours
Posts: 127
Joined: Apr 2013

we all know that palpable fear.  It's paralyzing at first.  And no amount of reassurance at first seems to help dissipate it.  Part and parcel with cancer I'm afraid.  The good news is you've found your issue early.  It's small, but changing, so your dr is spot on referring you to a Uro.  Be advised though, these are not "warm and fuzzy" physicians.  Most are no nonsense and quick to the point.  Mine runs an assembly line in his office.  There could be 30 people waiting, but never more than 15 minutes.  He moves them in and out.  I come here for the extra info he has no time for.

 

My tumor was 1.6 x 1.2 x1.1 cm.  Small by all accounts.  I had 3 drs tell me it only had either a 70%/85/90 % chance of being cancer.  In fact, it had a 100% chance. The original CT evaluation distincltly said renal carcinoma, no other consideration.  But I had 2 uro's recommend a biopsy anyway.  They perform these more and more now, and although very unpleasant, I'm glad I suffered through it.  I was trying to avoid a major surgery if possible.  Looking back now (6.5 months after Open partial) I should have just insisted on surgery and skipped the biopsy.  I turned down the option of RFA, as the followup schedule was intense and due to the location of my tumor I ran a signifigant chance of partial nerve paralysis along the Soas musccle (runs down the thigh into the lower leg).  Not somethng I was willing to chance.

 

And as Sindy said, and I agree, all the poo-pooing can be a little irritating.  We can only feel what we do.  I think the natural instinct is to expect people to agree with you, not minimize it.

 

Take care, and keep us updated.  You WILL pull though this.

Subscribe with RSS
About Cancer Society

The content on this site is for informational purposes only. It is not a substitute for professional medical advice. Do not use this information to diagnose or treat a health problem or disease without consulting with a qualified healthcare provider. Please consult your healthcare provider with any questions or concerns you may have regarding your condition. Use of this online service is subject to the disclaimer and the terms and conditions.

Copyright 2000-2014 © Cancer Survivors Network