Confusing information

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Confusing information

by gettingscared on Fri Nov 06, 2009 06:50 AM

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During a CT for extensive clotting in his abdomen, pelvis, and legs, a mass was found in his kidney in May.  He has suffered 4 events of clotting issues. Two that landed him in ICU for a week each.  The last ICU trip included a cardiac arrest due to a large clot traveling through his heart.  He was down for more than 3 1/2 minutes and I'm lucky to still have him whole.

The mass is 2.5 cm and a follow up CT in August shows that it has not grown, but does appear to behave malignantly.

We have scheduled his surgery, which should be a paritial, and all the doctors we have been to say it needs to come out and now to prevent any further growth--done.   They have been very nice, knowledgeable, and prepared.  I don't have issues with them except that sometimes I feel like they are down playing things. 

My husband called me today (his work takes him away about 3 weeks a month to our new facility where I'll join him if we EVER sell this house) having been surfing the internet for information about the daVinci. 

During his search, he started looking at a lot of stuff and that information has rattled him.

He came across statistics that talk about a low life expectency after removal of a tumor, 5 years is what he had stumbled across.  I followed some of the links he sent me and I find that they vary of course due to stages, ages, and statistical norms used.  His concern is very guarded right now, but I can tell he is terrified.

Terrified is something I've learned to deal with having had him near death with the first pulmonary embolism just two weeks before his 39th birthday and then been gone for that 3 1/2 minutes.

The docs now are saying that this mass could have started growing before his PE and that it could be contributing to him tomato soup-like thick blood.  The extent of his clots in May was described in his records as "an inordinate plethera of clots in the pelvis.

A message here about cancer in the shoulder and arm related to kidney cancer raised my fear to "terrifidest".  He has had a non-relenting bout of shoulder/neck/arm pain in the last 6 months.  Nothing is touching it.

Everything seems to be slapping us around right now. I know they will biopsy the tumor after it is removed, that that is when we'll get the truth about what it it.  After the surgery, we'll know more about the extent of things as visualized directly.

When it is shown to be cancer, will he have to have chemo, radition or any other traditional treatments?  The docs all say cancer with percentages of  anywhere from 70 to 98 percent not to re-occur.

I know this is disjointed and rambling.  The information saying the possibily of losing him in the next 5 years is just staggering.  Almost losing him at 39 and again at 45 two years ago and with the possibility of again in 5 or so years ...? Before he is 55?

AARRGGHH!  Can any of you smooth my hackles of fear?

 

RE: Confusing information

by susaninatl on Fri Nov 06, 2009 01:07 PM

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Wow-no wonder you are scared-those clotting events are major.  Your husband's kidney tumour is really quite small-it is almost unheard of for tumors less than 3 cm to metastasize, so try not to worry about the neck and shoulder pain.  Also the 5 year cancer related survival for early kidney cancer which has not metastasized is very good.  Take a deep breath.  You have time to make a good decision.  My husband is alive today because we took the time to get a second opinion at a major academic center.

Are you at one of the centers that really specialized in RCC-I'm talking MD Anderson, Cleveland Clinic, Memorial Sloan Kettering,Duke?  With small tumors percutaneous cryoablation by a skilled interventional radiologist can be an effective and safer option, and given your husband's other medical issues its worth discussing. 

Kidney Cancer Association has a nurse help line that gives physician referrals to the best in the country and a great book you can download for information.

http://www.kidneycancer.org/knowledge/learn/nurse-hotline-st

Please talk to them and download this book-I promise it will help you with your decision.  Best to both of you as you go through this scary time.

Susan

 

RE: Confusing information

by Jojo1968 on Sat Nov 07, 2009 09:24 AM

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Mmm.. where do I start.  I am 43 now.. got kidney cancer when I was 41. 8cm tumor on kidney. Pee'd thick blood for a week. Had left kidney removed when in June 2007. Was out of work for a couple of weeks. Now I am fine. Never had kemo. get tested every 6months. Just had my bloods done again .. Back in full martial arts training. And don't even think about it much anymore. The 5 year thingy is like a goal of the doctors to get you to. If you hubby survives the 5 years - the chances are very very good of full recovery. But, I reckon, he is young, and if he is fit, he will fight through this. Best wishes and God is good.. He got me through. 

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