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Cancer back (3rd time) need advise on dialysis

Time2luv
Posts: 27
Joined: Dec 2009

Right kidney removed 2006, Cryoablation on Left 2010, now 2, 1 cm spots again. One right in center of the kidney which is causing a lot of concern. Was told today would check again in June then decide what to do. I may have to have the kidney removed which means dialysis which scares the crap out of me. Does anyone have experience with dialysis? PLEASE PLEASE PLEASE continue to get your scans every 6 months to year. Don't give up on them!!! INSIST on getting them!

lbinmsp's picture
lbinmsp
Posts: 266
Joined: Jun 2006

I am so with you on begging everyone to get those followup exams! Me - original diagnosis 2001 - first recurrance 2006 - second recurrance 2011. Had my doctors been less diligent with those followups, I probably wouldn't be here today.

As for dialysis - I had a brother-in-law who was on dialysis for nearly 20 years (yes, 20). He had what was called then, Bright's Disease. He did remarkably well on dialysis - biggest pain was the time committment. He had to go in 3 times a week - each session lasting 3-4 hours. However, he did travel occasionally with his family - they just had to do pre-planning - find a dialysis center where they were going - get the referral from his own doctor - and then get on the schedule at the new location. I've also known a couple of other people who were on dialysis - one 8 years, the other 9 - before they both received transplants. Now, I don't mean to make this sound like it's a cake-walk - it isn't. Dialysis has many side effects that need to be monitored and dietary changes that are life-long. Perhaps you could ask your doctors about where to find a local dialysis center - go in and talk to them. Or, better yet, find a good nephrologist - if it comes to dialysis, you will need one of those dudes.

Good luck to you, my friend.

LB

LISAinTN's picture
LISAinTN
Posts: 143
Joined: Aug 2011

Hi Time,

I'm sorry I can't offer you any information or help, but I can offer prayers. I will be praying for you and your situation.

I have to say I am SO thankful that the doctor's are following me closely. My surgery was last July and every 6 months for the first 18 months, I will have CT Scans, Chest X-rays or Ultrasounds. Then after that, it will be every year. I kind of wish they would watch me every 6 months, but my tumor was small and they think they got it all. Still, kidney cancer is such a sneaky disease that I kind of wish it were every 6 months. Anyway, you are right. The follow-up scans are so important, and for many people, will be life saving. Take care.

Blessings,
Lisa

Limelife50's picture
Limelife50
Posts: 419
Joined: Nov 2011

Just a quick thought here,as far as ct scan schedule is concerned the plan is for me to have them twice a year or every 6 months for the first 5 years then once a year there after,not so sure that your docs are being quite vigilant enough

LISAinTN's picture
LISAinTN
Posts: 143
Joined: Aug 2011

Limelife, I wonder if it's because you had the cancer in two different areas? Do they think they got all of yours as well?

Blessings,
Lisa

cww71964's picture
cww71964
Posts: 95
Joined: Dec 2011

All I know about dialysis is that I have a gentleman that works for me, has both kidneys but only about 5-7% function. He has the at home dialysis system and does it while he is watching tv or sleeping. It doesn't seem to affect him one bit. He even says that if he drinks Heineken, his kidney function goes up!

Best wishes to you,
Wayne

Texas_wedge's picture
Texas_wedge
Posts: 2807
Joined: Nov 2011

Wayne - I bet that could be worth a fortune to Heineken - maybe you could get them to sponsor some dialysis work.

It's a pity we can't enlarge our pics. Your new addition looks handsome - is it in northern Nevada?

cww71964's picture
cww71964
Posts: 95
Joined: Dec 2011

Hi TW,

It is taken from the top of Mt. Tallac, 9,739 ft. overlooking Lake Tahoe. i look forward to doing the hike again this summer. This is actually California, Nevada is across the lake.

Limelife50's picture
Limelife50
Posts: 419
Joined: Nov 2011

The cancer in my bladder was dx as transitional cell,it was only 1cm and low grade,this type of of cancer is usually very easy to manage,I will be having my bladder scoped 3 times a year for 2 years,then for once a year there after.As far as my kidney that was dx as RCC,5CM but a grade 2 which is also considered to be of a low grade, but still 2 scans a year for 5 then once a year there after.Lisa I know you mentioned your tumer was small then again you never mentioned the grade then again it was RCC and from a personal point of view I still feel 2 scans a year for the first five years would be the safer way to go.

LISAinTN's picture
LISAinTN
Posts: 143
Joined: Aug 2011

Limelife,

I wish they would scan me every 6 months for the rest of my life. I'd feel better about it. I agree with you and will discuss that with my Urologist in July. Thanks.

You know, I had to go back through my posts to see where I had posted what my particulars were. I couldn't even remember the exact size of my tumor. That either means I am moving on past this and putting it behind me, or that I'm getting senile. I hope it's the former and not the latter. LOL

Here are my particulars:

RCC
Clear Cell Type
Fuhrman Grade 1
Greatest Dimension was 2.2 CM.
Negative for Extrarenal Extension
Negative for Angiolymphatic Invasion
Parenchymal Margin Negative, 0.1 CM AWAY.

Does anyone know what that last line means? I guess I've never paid much attention to WHAT that was because it said "negative" so that's all I cared about. lol

Blessings,
Lisa

foxhd's picture
foxhd
Posts: 2025
Joined: Oct 2011

Time2Luv, I have worked with at least dozens of dialysis pts. through the years. Most have to make adjustments in their lifestyle and most don't work. Most are over 60. But I believe that qualifies them for both social security disability and medicare regardless of age. Also, both my sister and mother were on dialysis due to kidney disease. Neither had cancer. I don't like my odds, but tests are all good so far. If it happens, it happens. Just another bump in the road.

livealive's picture
livealive
Posts: 127
Joined: Feb 2012

Negative margin is benign margin, i.e. without detectable cancer cells, and under the microscope, you can trust the margins were accurately benign..

http://www.jurology.com/article/S0022-5347%2805%2965383-9/abstract
http://www.ncbi.nlm.nih.gov/pubmed/17085113

BTW - I need some prayers, not sure if they work, but I will take anything that offers help. Angry and afraid, but grateful to you guys here.

Thx.

LISAinTN's picture
LISAinTN
Posts: 143
Joined: Aug 2011

Raj,

You have my prayers and I believe whole heartedly that they work. My doctor told me my surgery would be way worse then a hysterectomy that I had in 2000. (And it was bad! 2 months or more before I could even function half ways normal) I had tons and tons of people praying for me this time, for my kidney cancer surgery. Well, to make a long story short, my recovery was so quick and easy this time around and I just think I had so many people praying for me that things were easier for me this time. Besides prayers, I'm giving you a big, virtual hug. I'm sorry you're angry and afraid. I wish there was more I could do. Hugs!

Blessings,
Lisa

foxhd's picture
foxhd
Posts: 2025
Joined: Oct 2011

Raj, please don't let an ulcer become your biggest problem. Take a breath. This is a difficult time. Don't let emotion over take your well being. Think of good outcomes because you are being closely followed by your doctors.

livealive's picture
livealive
Posts: 127
Joined: Feb 2012

I understand, "theoretically", Fox. I don't want to be this angry, but I can't lie either.

I need to get some old films from the prior docs, been struggling since December to get these, they gave me a report where they stated they saw the tumor in 2009, but didn't tell me. The new oncologist wants to see these films, so they can determine course of action.

I am being asked to make a "written informed consent", on a clinical trial I have little information about. It can never be an "informed" consent, the word means something entirely different to me.

On top, they tell me standard treatment is follow-up - and the surgeon is giving me an x-ray and an ultra-sound as the follow-up, unless you get into that trial we are telling you. I genuinely think and "know" he is a good guy, but, I feel like it's arm twisting to get into a trial. I can't speak for them.

Until now, everything has been controlled, risks mitigated, problems analyzed, solved, or damages accurately identified and accepted. This thing, is alien, and yet, my own body.

I am trying, Lisa's story helped. I finally have found other oncologists who are willing to follow me better, but, believe me it's a struggle. And I dealing with hospitals in NYC. Maybe they see this a lot, and I am just "another patient", today, I said to the doctor, look at me as a human being. I think she did.

But, back to anger, tell me how do I get there ? I understand I need to get there.

Thank you.

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

Raj,

Is it anger or is it an extension of fear and frustration at where life's road has led you?

In a previous post you wrote;

"I have hit a wall, can't analytically solve this one, reached a failure of intelligence, given the absence of information. Now it's coming to other skills, trust, faith, the higher power, the inner voice. Always been too dense to listen. Maybe it's an event to form a karmic imprint ? Or maybe there is a God, after all ? It's all in question."

It seems that for perhaps the first time in your life you are faced with a problem that cannot be solved by any of the tried and true methods that you have relied on. It is evident above that in your heart you understand a leap of faith may offer the only resolution and I would agree.

A wise man once said "I would rather live as though there is a God only to learn upon my death that there isn't, than live as though there is no God and learn upon my death that there is. I think belief in a higher power is a very personal thing, my own beliefs are just that, my own. I subscribe to no organized or recognized religion, can't quote a single verse from the Bible, and in fact disagree with most of what is preached such as punishment for all who don't believe as I do. My beliefs are based on what is logical to me, yours likely are or will be completely different, but no less relevant. Turn your considerable analytical skills loose on your inner self, I believe you can come to terms with the fear, frustration, anger, and emotions that are squeezing the life out of you and take that leap of faith.

If I can do it anyone can,

Gary

livealive's picture
livealive
Posts: 127
Joined: Feb 2012

Gary, I think you have a point, anger is not my root emotion. The root emotion is fear, then I realize, I can't do anything about it, so I get frustrated, then angry. Moreso, because, two of the 2009 reports say they saw it, called it a Pseudotumor, but didn't tell me.

I think I may be classified as agnostic. I don't know about God either way. But, that said, I do believe I ought to be defensive. Then the question arises, be there a God, then why do you make me suffer ?

I just hung up the phone with my father in India, he said the same thing, inner voice, but which I don't hear. Maybe, I hear, but don't listen. My brain says take the drug Pazopanib directly, different doctors different opinions. My gut somewhere thinks, I will be OK, but my gut also didn't ever think I would have a tumor, and which they detected, but ignored.

Question guys, is there any advantage to aggressive monitoring ? If recurrence, and caught early, is there hope ? An oncologist told me yesterday, Pazopanib only shuts off formation of blood vessels that feed tumors, but the cells themselves can survive by osmosis.

Any one knows ?

Gary, thank you.

Best,
Raj.

Texas_wedge's picture
Texas_wedge
Posts: 2807
Joined: Nov 2011

At risk of over-generalising, I'll venture the remark that our bodies harbour innumerable noxious agents all the time and our biological defence mechanisms work to keep them in check. The presence of some circulating cancer cells isn't enough in itself to warrant anxiety about possible recurrence. The fact that pazopanib is designed to counter angiogenesis but not to act in other ways doesn't seem to me to be a contra-indication for taking it on.

I have many comments to make on your other themes but am having to ration my time at present. I think that while still agonising over a difficult decision, you're finding contributing so much good stuff (and obvious goodwill) to these threads cathartic and therapeutic. Is that so? I hope so.

Just as an aside, there's a lot of good info. on the Web about foods which have varying degrees of anti-angiogenetic efficacy.

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

We must spend time in darkness to truly appreciate the light.

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