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i am new to this site and not sure how to post

whatnow2do
Posts: 3
Joined: Dec 2012

Found out tumor is larger then original told and report has other stuff in it i want it investigate after the go to bed. I want to wait till after Christmas and my daughters birthday. I want to have all the information first do i can answer their questions. And i just don't know how to throw one more thing at them. My ex husband of 20 yrs left me because he found something better and never looked back leaving me to raise kids myself n kids to lose their home friends every they ever knew. Has supporting his girlfriend n her kids becauseshe refuses to work while i am unable to. So here is my last question does medicare cover this.

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

Welcome and you're doing fine so far with posting.

Your prognosis is very good with a small tumor and stage one. You're entitled to know whatever your docs do but there may not be all that much more for them to tell you.

How are you feeling and recovering from surgery? (I presume, from your saying you're stage 1 that you've had an op.)

icemantoo's picture
icemantoo
Posts: 1837
Joined: Jan 2010

I see from your Bio that you have not had the surgery yet. That is usuaully the first step after diagnosis and consultation. Not fun, but that is what to expect out of the gate. A tumor of 5 cm is almost always Cancer. So what you are going to have it removed and you can tell people you had Cancer not that you have it. As for prognosis there is close to a 100% cure rate for tumors 4 cm or less from the surgery alone. Not a perfect prognosis for 5 cm, but close. Mine was 4.2 cm and that was almost 10 and 1/2 years ago and I have not had any Cancer since then. Being told you have Cancer is quite emotional, but with your initial diagnosis things will get better.

Icemantoo

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

Hi Whatnow,

Its not fun hearing "You have cancer and need surgery.", but by the sounds of it they caught it early. As far as cancer goes, RCC is one of the easiest to treat when caught early, there is a very good chance that surgery will be the only treatment you will ever need. The docs are probably telling you everything they know for sure, but until it is removed and sent for pathology its best guess regarding the tumor. There are several surgical options to consider, you have time, find a doctor you feel good about, ask questions, and if you feel their recommendation is the right one, get it done. Life with only one kidney is pretty much the same as life with two, so if they have to do a complete nephrectomy instead of a partial don't worry about it. Expect and prepare for a couple weeks of downtime after surgery, depending on your situation, arrange for help, prepare meals ahead, etc. The surgery will not be as bad as your mind imagines it to be, but it is not much fun. Its a good idea to exercise between now and having surgery, as little as a daily 1/2 hour walk will make recovery easier. This is a solid group of knowledgeable and supportive people, you have come to the right place. I encourage you to read our stories, ask questions, vent as needed, and remember we've been there and we understand. Keep us posted, we're here to help.

You are not alone,

Gary

Wolflvr's picture
Wolflvr
Posts: 14
Joined: Dec 2012

You've gotten some solid answers here and hopefully they're helping.

I also read your bio and I also read your blog post. The very first thing I have to say is breathe. I am 32 and had my right kidney removed July 30th due to an RCC larger than yours. My 3 month scans were clear and I am optimistic they will continue to be. I did my research and decided not to tell my children that I had cancer. They are too young to understand. Instead I told them "Mommy has a bump on her kidney so they're going to take the whole yucky thing out! No jumping on mommy for a while." Lots of hugs and answering questions in terms they understood with no monsters under the bed that would come and get them later. I will explain when they can understand. I will explain further if needed. I will not borrow trouble. Oh and they found mine in May, had it taken out end of July. I would get it out asap, but I wouldn't panic over waiting a littile bit.

I, like you, have other health problems. The main concern being severe disabling epilepsy and the meds I take for that which compromise my kidney function already. We are monitoring it, everything is fine. When it isn't, we'll deal with it. Until then... I don't do anything to further compromise. I drink my water, I don't take NSAIDS, I don't drink (can't anyway, but whatever, heh).

I don't know if they can do MRI's with metal in your back. If they can't they'll do something else. As long as they know that you have them, they will take care of you.

I don't know if this makes you more at risk for bone cancer. I DO know that now that you have this they will monitor you more closely for any mets or recurrence and will hopefully catch anything that pops up early (but don't wait for something to pop up).

People like us who have been through health crisis after crisis get this diagnosis and think that's it! THIS is what's going to kill me! As hard as it is, you have to try to rein that in or the stress is what's going to kill you and the cancer will be sighing in a medical waste container somewhere.

Listen to your doctors, ask questions (here or there) and try not to get too far ahead of yourself. We'll all help anyway we can. Look at your kids faces and know that you're going to get through this. Whatever it takes.

(edit) Forgot - Yes, medicare covers nearly all of it depending on the parts you have.

icemantoo's picture
icemantoo
Posts: 1837
Joined: Jan 2010

I am going to respectively disagree with the above comment regarding Medicare. Medicare is available to those of us over 65 (as long as the Democrats stay in power) and those younger who have been on Social Secutity Diasability for over 22 months. While Wolflvr may have Medicare as a result of other disabilitiers in her bio, it is highly unlikely that What2do has or is eligible for Medicare.

Icemantoo

Wolflvr's picture
Wolflvr
Posts: 14
Joined: Dec 2012

I was responding to a question she what2donow asked in her blog post. She asked if Medicare covers it. I answered and assume she does have it due to the numerous health problems she mentioned in that post, her asking the direct question, and my own experience with Medicare being disabled. My apologies for not making it clearer that I was responding to the blog post as well.

whatnow2do
Posts: 3
Joined: Dec 2012

I posted an updated yesterday apologizing for my ranting the previous post. Also thanking everyone for their help replies. But I have not seen it posted. Has any one else had this experience?

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