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Tim Wisneski's picture
Tim Wisneski
Posts: 17
Joined: Jan 2016

Hello all,

I am brand new to this group as I am brand new to the idea of having a very large tumor on each kidney as well. Just last week after seeing a urologist for blood in my urine he prescribed medicine to stop the bleeding and ordered an ultra-sound. This revealed the growths that are 60x60x60 cm and the other 75x65x70 cm. This was followed by a cat scan with contrast that confirmed same and also noted growths on the lower part of my lungs.. WOW what news! This urologist didn’t have much of a bedside manner at all, he basically said to stay in bed and continue to take medications for the bleeding, hardly anything else..

I have just yesterday consulted with an oncologist who didn’t paint a very pretty picture, but he has offered just a little hope anyway. However I am worried about the next step as per the oncologist recommendations, he wants a biopsy of both kidneys ASAP. I hear rumors but have not found anything solid to confirm if this biopsy will accelerate the spread of cancer cells throughout my body! 

If anyone could share their thoughts on the biopsy I would be very, very grateful. 

Thanks,







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Tim

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

I am so sorry you have to be here but you'll get a lot of information and a warm welcome from everyone. While I'm not a doctor, I don't understand the need for the biopsy. Sadly, the vast majority of time such large growths are cancer, and besides, even if they weren't, you'd have to have them removed anyway since they're already causing problems (bleeding). Definitely try to see a urologic oncologist, one who specializes in or is at least highly experienced with kidney cancer. You'll also need someone for the lung growth. I'm surprised that with the mention of biopsies of the kidneys no mention was made to biopsy the lung. Wishing you the best and hope you find someone who has better bedside manner and something more helpful to suggest than bed rest and medication.

Bonngo's picture
Bonngo
Posts: 79
Joined: May 2012

Sorry you have had to join this group, but know you will be welcomed with kindness.

I agree, you need to find a urology oncologist which will be found in a major medical center.  I was told by my oncologist that biopsies have a high percentage of false negatives leading the patient to believe the tumors are benign.  

Please keep us posted!

~Bonnie

 

 

Tim Wisneski's picture
Tim Wisneski
Posts: 17
Joined: Jan 2016

Hi and thank you guys for your reply first off! 

My first post was without any explination at all but he re I will fill in some blanks, I live in SE Mexico with my wife and children, im 48 years old. I am self employeed with no helth insurance, we are not poor by any means but sure not in a possition to just sit back and not worry about money. 

I have been called "hard" or "crule" many times but the truth is im a realist and sometimes the truth hurts but in my oppinion its much better than a sugar coated lie.

My wife and I have made a decision to sell off all our accumilated stuff not realy necessary to get financial affairs in order and also set her up with some sort of a buisness (miabie a fast food franchise or something) that will produce a comfortable life style for her and the kids should I be out of the picture. 

Im not afraid of the worst for me, but it gets to me thinking of the family needing to make their way after im gone! 

So you havnt heard of a biopsey actually spreading the cancer? 

BTW, the first post clearley should have been mm NOT cm

Regards

Tim

dhs1963's picture
dhs1963
Posts: 511
Joined: May 2012

Today is the last day to sign up until the next open enrollment.  Sign up for the best insurance you can.  You need it now.  DO NOT WAIT UNTILL TOMORROW!

Dutch1's picture
Dutch1
Posts: 152
Joined: Mar 2014

Tim;

It sounds like you have a very complex situation.  You need very good medical advice.  Find experience, skilled professionals.  There are certain hospitals/clinics that are kidney cancer centers.  People swear by them.  If you have misgivings about the advice or care that you are receiving, put out the feelers for new names to call. 

Bedside manner varies a lot between physicians.  It certainly happens with the kidney cancer pros.  For instance, my surgeon (whose work I respect) was the "glass is half empty" guy.  My oncologist is the opposite.  You have to fight through the doctors who are more pessimistic.

Also, don't be afraid to get second or third opinions.  Any doctor should not be afraid to have his or her patient seek collaborating advice.  You are the one who should be satisfied as to your course of care.

PS:  I started this posting before seeing the correction to the tumor size.  CM vs. MM makes a big difference.  Had I thought about it, the measurements in CM would leave you with huge growths to deal with.  The size difference brings more hope.  The lack of insurnace will be a burden; your care will be expensive.

Dutch

Srashedb
Posts: 482
Joined: Dec 2013

the size you give to each mass doesn't make sense to me; did you forget a period somewhere?

My strongest advice is to seek an oncologist who is very experienced with renal cancer; get this oncologist before a biopsy.

there is a world of difference when it comes to renal cancer between a regular oncologist and one who has vast experience with renal cancer.

take a deep breath and then get back here. 

Good luck and good wishes

Sarah

Tim Wisneski's picture
Tim Wisneski
Posts: 17
Joined: Jan 2016

Yes the size should certainley have been in mm NOT cm, sorry. I would think there has never been a 23 inch kidney tumor (sure hope not anyway!), mine range from 2.5 - 3 inches.

I understand so far from what I have learned that thats real big but still learning every minute on this subject. 

As far as the cost as Dutch mentioned, yes this is a worry. I asked just out of information searching to find out that a kidnet removal here in Villahermosa, Tabasco Mexico would cost roughley 8,000 us dollars. 

I suppose the medicines are the most expensive issue huh? 

Regards

Tim

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

Is there any way you could come to the states for consultation? No offense to Villahermosa but I think if at all possible you should seek medical advice and attention here. I'm not confident that they have the experience and expertise to deal wtih such complex case (growth on each kidney and lung).

Jan4you's picture
Jan4you
Posts: 1326
Joined: Oct 2013

HUGS Tim, I am sorry you and your family are facing this news. However, as other have said already, see a Urologist who deals with this type of cancer/surgery. I too have heard that biopsies could spread the cancer, but again, let an expert MD tell you such.

I  also think it must be measured in mm, not cm. Look again at the report and consult with your Urologist too.

They usually want a CT where they can get a more exact look  at your kidneys.

Let us know what you need as we'll walk this journey along side you if you choose.

Sending you calming and healing vibres.

Warmly, Jan

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

Don't lose hope.  And don't lay back and take medication, that won't make the tumors go away.  You need to find a new doctor, someone you have a good repoire with.  If at all possible try university type hospitals for a urologic oncologist.  I'm sorry I'm not familiar with SE Mexico in terms of what might be available to you.  I know in the states there may be financial assistance available.  And yes mm's vs. cm's makes a huge difference. 

I'll keep you & your family in my prayers.  We all are familiar with the initial shock of a diagnosis like you just received, but try to stay hopeful and know that a cancer diagnosis does not necessarily carry a death sentence with it.

Keep us updated as to your progress finding a new doctor.  Best wishes.

Donna~

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

and so sorry to hear your news.   Maybe the doctors choose urology for a specialty because that end doesn't talk back.  Hah!!

A distant relative was living in Mazatlan and he went to a specialist in Monterey.  May I suggest that you find a different, more empathetic and specialist for more info and treatment.

That said, perhaps you left out a decimal point on the measurements of your kidney tumors.  6.5 or 7.0 cm sounds more logical, otherwise the measurement is more likely 65 mm or 70 mm.

There are a lot of determining factors that come into play with surgery, such as are they encapsulated, or spread into the kidney tissue, have they spread into the venous or lymph system?

I question the wisdom of any biopsy, as size indicates it/both need to be removed.  Can they do a partial or a full nephrectomy on either or both kidneys.  You need to be left with either one kidney or parts of one or both kidneys.  I also know someone in my town who had partials on both kidneys and is still functioning OK. 

There are drugs that can be used on mets to lungs, if in fact, it is kidney mets to the spots on the lungs.

You need much more information before you make any decisions.

Go with God.

Hugs,  donna_lee

 

Pandabear1011
Posts: 123
Joined: Jun 2014

Hi Tim....My doctor at MD Anderson told me that they don't do biopsies on kidney tumors due to the possibility of spreading the cancer cells. If there is any way you can get to MD Anderson in Houston, Texas they will have answers for you . Best wishes....Panda

dhs1963's picture
dhs1963
Posts: 511
Joined: May 2012

75x65x70 cm is huge.  I have never heard of a tumor that big....that would be like 24 inches on a side.  I think it is 75x65x70 mm.

 

Second, we have all been there -- you need an oncologist who specialized in RCC.  You do not say where you are located.  But there are several cancer centers with RCC specialists.  

 

Bilateral disease is scarier as we need one kidney.  I would reach out to NIH Urologic Oncology group -- because of the bilateral disease.  The contact there is Lindsey Middleton.  You can get her contact information through google.

 

 

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

Tim,

 

There are no simple answers to your questions. Either of your tumors can be dealt with, but I would seek medical help as I up on the food chain as possable for your diagnosis. Dhs has a good suggetion to start with.

 

 

Icemantoo

Allochka's picture
Allochka
Posts: 922
Joined: Nov 2014

Hi,

I have no more advice other than what others have suggested. But just want to say - hold on, don't give up without a fight. There are many Stage 4 people here who manage this as a chronic disease.

Good luck to you!

Tim Wisneski's picture
Tim Wisneski
Posts: 17
Joined: Jan 2016

Hello all and good morning,

Thanks for your replies, it does help a lot to share with people who know what the feelings are running around in my head. Yesterday we spoke again with the oncoligist and after further study of the images with other doctors, one Kidney they say is damaged beyond any intervention and not functioning at all. The new plan now is to wait a week or so for me to get some financial affairs closed up and then schedule surgery, at that point they will remove this bad Kidney and have a good look at this thing. After that they will plan a partial on the other and also be looking at a donor Kidney.

For many years I have only seen a Canadian doctor who lives a few hours from me, he has became more a family friend than anything else. He is not specialized in anything that I know of but as a friend he is wanting to review all the scans and reports to put this into an understandable language and find us who he feels to be the best specialists here in our area. 

Many years ago I had Gullian-Bare Syndrome and needed to visit a hospital in Texas, this was back when I had good health insurance so everything was taken care of.. This go around is a little differnt with no health insurance (how stupid of me to not buy this). Just never worried about getting sick, lived on black coffee, cigeretts and later in the day Jack Daniels and coke, this was basically a daily routine unless I went offshore with our service technicians when it simply switched to only coffee and cigeretts. Well it caught up to me it seems. 

Immediatley after this without question, the coffee, alchohol and dark soft drinks are done, I am still strugeling with quiting smoaking, slowed way down but for example today ive had 2 so far in the 2 hours ive been awake... 

I am thinking about a small hotel here in our town as a good source of income for my wife, really we were thinking about some other source of income for quite some time before any of this becouse the work I done on the oil rigs is highley specialized, we have good help but when im not there to guide the guys it all stops and thats just not good. Past couple years of my crazy lifestyle afforded us with the means to accumilate about a milion dollars in property that should be moved with little problems. My idea is to get rid of the ranch and all the other stuff we dont really need, have a good lump of working capital to set up with a hotel or some other buisness and still have money set back to take care of my situation and life in general. 

Some might say why worry with another source of income, but I think its best to have all the bases covered before going in for surgery in case things get worse fast. I am at ease when thinking that my wife and kids will be ok regardless of any outcome. 

OK enough of my rambling on for a while, thanks for your support.

God Bless

Tim

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

While certainly no one would advocate a diet of cigarettes, black coffee, and alcohol, there are plenty of us who did not do that and still ended up with kidney cancer. Others who do abuse all of the above live to a ripe old age of a 100. So there's no guarantees that a healthy lifestyle will spare you cancer. I was a health nut and yet here I am. Anyway, it's good that you're thinking ahead but i still think you should use some of your assests to get expert opinion here in the states. Or at least in Mexico City with large hospitals and experienced physicians/oncologists. Wishing you the best and ramble on any time you feel like it. We'll listen.

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

Your Canadian physician/friend is a good start. 

I agree with what APny had to say regarding life styles & habits.  Certainly no gaurantees. 

It's nice that you have the luxury of being able to move some money around and making some changes there as well.  Again, try to find the best doctors you possibly can, stay as positive as possible and keep moving forward.  As bleak as things sound, you can still put up a good fight, so don't throw in the towel.  I'm sure your family still considers you an integral part of their lives and more than the possessions you've been blessed to be able to afford.  None of us will leave this world with our possessions, so make the most of your relationships now.

I'll keep you and your family in my prayers Tim.

Donna~

Positive_Mental_Attitude's picture
Positive_Mental...
Posts: 454
Joined: Jul 2014

Tim,

I basically have lived the life of a monk.  No alcohol, no cigarrettes, eat fairly well, and in relatively good physical condition.  Sometimes cancer is just random.

 

As far as your financial affairs, do you have someone like a financial advisor (even someone at your bank) who could sit down with you and provide you the best guidance.  And as others have said, you condition does not mean you are going to die immediately or very soon.   You may have many years to live.  The initial diagnosis is overwhelming, but try to take things step by step.  Get the bad kidney removed.  Hopefully you can get a partial on the second kidney.  A lot of folks live with a partial kidney.

 

Good luck and keep us posted.

Coldbiker's picture
Coldbiker
Posts: 23
Joined: Jan 2016

I assume you are a US citizen I would check with the embassy or better contact the ObamaCare team to see what you would have to do to get health insurance, some good changes like they can't deny you coverage for pre existing conditions. Whatever that cost would be including coming back to the states, would have to be cheaper than covering this yourself. Good Luck and please keep us updated. 

Allochka's picture
Allochka
Posts: 922
Joined: Nov 2014

About the lifestyle - a friend of mine never smoked and died of lung cancer aged 44 ... A colleague had a pale skin and always avoided sun - had melanoma anyway, luckily stage 1 and out of danger now. You never know. Sometimes I think that some not so healthy habits (like wine, chocolate, a cigarette on a weekend) should stay - they give us joy of life, much needed innocent  pleasures. I'm not saying we should live unhealthy, but don't think we must totally restrict ourselves, because it brings no guarantees.

Tim Wisneski's picture
Tim Wisneski
Posts: 17
Joined: Jan 2016

You guys sure have loads of wisdome for sure and thats what us "newbes" need (at least me). Right now the wife and I are just going to take it easy at the ranch house away from everyone and everything for the next couple days, its much needed.

Thank you all for your thoughts and advice, God Bless!

Tim

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

Hi Tim,

Welcome to our forum. It is scary news that you received and a lot to process. You have received lots of great advice. Please take it into consideration.

Don't lose hope, and on top of everything - don't blame yourself!!

Thinking about you - we are here to support you in any way we can!

Hugs

Jojo

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

Wellcome to our forumTim

It's best desicion to take it easy(easier said than done) but being positive and not losing hope is all we can offer our emmune system to make it able to fight and hopefully win.

We're all here for you

Forough

 

 

 

cheatinlil's picture
cheatinlil
Posts: 194
Joined: Jun 2014

Sorry You are here with us Tim!  I just wanted to share because I'm not sure anyone touched on it and I heard you ask about perscriptions.  My husband's chemo pills are $10,000 for a 30 day supply.  We have insurance and we pay $3,000 for a 30 day supply.  THen we reach our out of pocket maximum and it is free for the rest of the year.  I was also able purchase Alfac after my husband was diagnosed.  We haven't used it yet because you have to pay for it for 2 years before using it when you have a pre-existing condition.  Also, we had 1 test that wasn't covered by insurance and it is $20,000.  I say this not to scare you but to motivate you to get insurance.  MD Anderson was kind enough to say they will call us to follow up on unpaid bills but they don't send it to collections.  Weird!  Anyway, we pay them $311 a month for covered tests that seems to go up $100 a year.  I'm really sorry you are here with us.  Keep posting.  You can still have a good 10+ years on this earth so don't give up and throw in the towel !!!!!

Tim Wisneski's picture
Tim Wisneski
Posts: 17
Joined: Jan 2016

Hey thanks for the eye opening facts on the perscription costs, damn that needs to be ilegal to charge soo much for medicine! WTF?  Kind of like the kidney deal, I read where on average the donor is paid 3000 but on average the hospital charges 100k

Anyway thats the world we live in..

As far as insurance goes, I need to get some.. I dont know about trying to gety on board with Obama-Care thing becouse hell I havent paid any US taxes since I cant even remember HA. That was always part of my deal for living way down in Mexico, I always hated the idea for giving someone else 30-40% of what I earned. Now I wish I was a little more "normal" in my way of living, filed taxes, bought insurance, etc, etc.. Hindsight is always like this though isnt it? 

Hey, how long is normal to wait or put of surgery? We been a couple weeks now since finding out and the waiting is hard! Not becouse of any sort of pain or discomfort, but simply mentaly.

We got way more than enough for the first planed surgey to remove the kidney that is shot, do the biopsy and see what the story is from there, but I really want to have everything in order somehow for the what if scenarios. Also for the following surgery to partially remove the other kidney. 

Still havnt quit smoking altogether, but working on it. Funny the other day when the wife and I were staying a few days at the ranch! I simply dont have much urge to drink anymore, but the wife gave is and had more than a few JD and cokes, it sure was funny to see someone else drunk while I was "normal" :-)

 

 

Tim Wisneski's picture
Tim Wisneski
Posts: 17
Joined: Jan 2016

Well I began my medication today, a few moments ago really. Doctor perscribed SUTENT 28, 50mg per day (Sunitinib). Have any of you all been on this medicine, anything good or bad to say about it? DAMN EXPENSIVE with no health insurance thats for sure!

I find that the Obamacare, as good as some parts are (example: insurance companies cant turn you down for pre-exsting) only applies to an American living in the US. Same goes with assistance that drug companies like Pfizer offers. 

Looks like I might need to move my family to the states for any sort of financial relief at all.

OK time to lay back watch a movie and see what this Sutent feels like...

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