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When Ned isn't Ned

dhs1963's picture
dhs1963
Posts: 424
Joined: May 2012

So, the other week, I was at clinic getting my scan results.  The urological oncologist gave good news that the scans showed no change.  Yesterday, I received my scans in the mail, and read the results.  From a big picture, things looked good, but there were several sub centermeter enlarged lymph nodes (in the lungs and pelivis).  Now, there did not show up as particularly "hot" on the PET scan, so they are not really active, and they are small.

I emailed the Dr I saw at NIH and got back they are watching these, but there is minimal change since April.  They may or may not be cancer, but they are not an immdediate threat.  The ones in the pelvis can be felt, and are hard, but painless.

Oh well.  This should keep my hypochondria going for a while.

And this is what I get for committing to something longer than three months (coaching Daughter's Basketball team).

 

BDS's picture
BDS
Posts: 128
Joined: Aug 2012

Now I wish that I was NED but I have the same problem. My last scans were good (nodules are either stable or slightly decreased in size – no new nodules) but I had two lymph nodes that showed activity. One lymph node which grew in size only 1 mm and the other a nonspecific lymph node that is 11 X 13 mm. My oncologist told me not to worry about it and they will be re-examined during the next scan. When I started treatment with Votrient my right retrocrural lymph node grew in size one scan than decreased in size on the next scan. What you have to accept is that there is going to be a waxing and waning of the lymph nodes and nodules. It’s when they significantly grow in size over 20 percent that you have to worry. So if your oncologist is happy be happy and go enjoy coaching your daughter's basketball team. - BDS

 

 

 

    

 

foxhd's picture
foxhd
Posts: 2213
Joined: Oct 2011

I think about this concept also. No evidence of disease does not mean there is none. Just nothing currently observable. I don't think they hand out the "You are cured" prognosis too often. Chronic but stable is our realistic goal. May as well coach. You have lots of time left.

dhs1963's picture
dhs1963
Posts: 424
Joined: May 2012

NED does not mean all clear, but it means that nothing is visible at that instant.  But, it is hard to measure things that are less than 1 cm.  It does mean that I am ok till the next scans, though, as they will not grow to a threatening size in only three months.

It is just whenever I think beyond the next scan, I get reminded of the futility of such actions.

 

TillieSOK's picture
TillieSOK
Posts: 246
Joined: Jul 2013

Not trying to be funny...but long live hypochondria! :). I hope they keep a really close watch on your "hot" AND "medium warm" spots and they either go away completely or don't get any bigger.  

I think I could use a heaping dose of hypochondria right now....shall we go see where we can find some on sale? LOL. Take care and keep us updated.

 

izzycohen
Posts: 64
Joined: Aug 2013

Your results and insight are things about which I haven't previously considered.  Although sobering, I have once again learned something from my fellow club members.  For that I am grateful.  I hope your hypochondria survives for many years.

 

Thinking of you.

 

Izzy

angec's picture
angec
Posts: 723
Joined: Mar 2012

DHS, sorry that you are bummed out after such good news last week! But don't think about it too much.  First of all the spots weren't active so that is good.  The nodes can be a little enlarged for any reason, colds allergies, etc.  I know non cancer patients that at various times had nodes show up in several areas at a time and it wasn't anything.  That is the way I am going to lean! YOu go and coach and try to focus on the good things.  Stay positive!

dhs1963's picture
dhs1963
Posts: 424
Joined: May 2012

I do not think it is cold or alergies -- they have been watching them for 9 months,  We will see.  I can not see the nodes on the scans.  I don't mean to complain, but I am good at it.  Seriously, though, the way it has been explained to be is eventually, I will die of RCC, unless I die of something else first.  And that could be in 40 or 50 years. 

I just wish I had enough information so I could plan.

todd121's picture
todd121
Posts: 818
Joined: Dec 2012

"I just wish I had enough information so I could plan."

I've been thinking about this conundrum a lot recently.

Are we really in a different position than we were before? We planned things before and we had absolutely no idea whatsoever what we would die of or when. 0. None.

Now we still don't really know.

So what is the problem??

I think we have to go on making plans. Does anybody have a better solution? I'd like to hear it. We're just not going to know when we're going to die or of what. And if we did, would we change our plans? Shouldn't we be living as if our time is limited? It is. Always has been.

It's really difficult, though, not letting a little possible future cancer spoil the smell of the roses in our garden today.

Todd

TillieSOK's picture
TillieSOK
Posts: 246
Joined: Jul 2013

Oh! Oh! Me! Me! ( frantically raising and waving my hand!) I'm PLANNING!!!  I have no idea what next week or the week after might bring tight now, but I AM planning on going to the dermatologist on the 14th of Nov., to visit my son, daughter in law, and three grandkids around Thanksgiving AND to see my daughter get married to a wonderful man in Montego Bay, Jamaica, and hopefully see my two grandsons in Oklahoma.  Then, I'm going to go deep sea fishing in January and take a glass sculpting class in February!  If I can swing it, I'm going to go to Vegas to a glass and bead convention in March, after going back tomSan Antonio for granddaughter's birthday!  Then I'll be back for my one year nephrectomy anniversary! Whew!  How's that for making plans?!?!

dhs1963's picture
dhs1963
Posts: 424
Joined: May 2012

I am somewhat at an earier stage in life (49, mid career, 11 yo daughter).  I am thinking more like protecting my family.  My biggest problem is my life insurance is tied to my compnay (I maxed out what I could buy through them when I was healthy; now I can not get more).  I do not have enough savings for my wife and daughter to get by with out the insurance.  With the 1 million, they will be ok.

That means that, financially, I can not lose my job.  Sounds easy, right? But the company is trying to reduce costs and liability.  A few weeks ago, it was pointed out to me that I have missed a lot of work in the last few years -- by my customer, not the company.  The probem is my customer is not legally required to make accomidations. And no coverage for my time, no job.  The only thing that keeps things ok is that there is no one else in the country that can do my job (actually, there are four other people, but they are employed).  It also means that there are demands on my time, some of which I can not abide with.  (this was a great situation when I was healthy, btw).

 

Sorry, I will stop *****ing now.

angec's picture
angec
Posts: 723
Joined: Mar 2012

Our dear friend, TW, a few weeks ago quoted " Some die the day they are diagnosed, and some live to the day they die!"...... Yes, you have cancer, it is hard to get pass that thought, I hate cancer also.  My mom has it and I am her caregiver. There is not a day that goes by that I am not scared or worried, I freak out with her scans and the list goes on.  But, no one knows what will happen or how we will die.  When my mom got diagnosed in 3/12, I was a total basket case!  But since that time, three of my good freinds lost their non-sick parents just like that, no warning. One died from a uti that went sepsis at 70, another had a heart attack at 74 and was gone in five minutes, another at 63 died of a rare, sudden cancer.  My mom  is stage 4 but she is still here with us.  So, who knows?

Then there are those that die in hurricanes, tornados, earthquakes, car accidents, and the list goes on!  I say, if you are healthy enough physically to go out and live your life, then do so. Plan trips, go out and have fun! Don't sit home and wait to die! There is so much advancement in the world today and especially with RCC, things are looking positive.  

Was it Valerie Harper who has brain cancer that said, "I don't let dying or cancer consume me, it is part of me but i have a life to live."  Smart woman.  It might be easier said then done, but we have to try!  Put on a comedy show and laugh.  Ever watch Mrs. Brown's Boys on BBC?  That show had mom rolling on the floor yesterday!  I know one thing, stressing and worrying is not going to add one minute to our lives!  Let's plan something!  

DHS, don't worry about whining or telling us you are afraid, we are here for you! We understand, we are all afraid!  Let's try to block the thoughts out for a bit and focus on living and having some good times.!

I mean all of this in a positive way!  I am proud of all of us!

XXOO

foxhd's picture
foxhd
Posts: 2213
Joined: Oct 2011

exactly Ange. We live with cancer. It is a chronic disease. Any time worrying is time lost and not recoverable. Only positive thoughts. If our life is to be  shortened then enjoy every minute. Pizza and beer for everyone!

Limelife50's picture
Limelife50
Posts: 445
Joined: Nov 2011

I worry alot about dying at times but at the same time i have  been to a few funerals since i was told i have cancer i guess one thing i can thank my cancer for is that it has made me a better person since i found out i had it.

I am alive
Posts: 269
Joined: Jul 2012

I agree wholeheartedly with you Angec and Fox and I smiled when reading all your upcoming plans Tillie. I think it's real important to plan fun and engaging things to do....pepper your calendar with "pick me ups," get togethers and activities to look forward to. No matter what stage in life your are in. Dhs, you are under incredible stress being the breadwinner in your family and having a young daughter to raise. And your job concerns are valid. But do try to give yourself good times and stress breaks. They're probably not going to happen if you don't plan them. If planning that kind of stuff is not your thing, ask your wife to take charge. I call my husband my consierge because he's the social director. Left to my own devices I would probably hole up in my house for weeks at a time. He gets us out to the movies, to dinner with friends, day trips, family outings,vacations, trips to the museum, ballgames, concerts, etc. Having things to look forward to - whatever floats your boat - keeps you moving forward, and keeps your mind off the heavy stuff. Which I think is just as important as eating right, exercise, and all the rest.

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