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Reality Check

icemantoo's picture
icemantoo
Posts: 1658
Joined: Jan 2010

I am in the process of closing my Law Office and touching base with my clients now that I am 70. One client I called was in her mid 70's and I had been to Court with her a few months ago regarding her sister's disability. She told me that right after I saw her last she was diagnosed with lung Cancer and had just had Chemo. I suggested rather gingerly without trying to hurt her feelings that we may have to go to Court and appoint a backup to be in charge of her disabled sister (something she was vehemenntly against in the past). She came in with another sister a few hours later and I was shocked. She appeared to be near the end.

At that point I realized how lucky the other Stage 1 Kidney Cancer survivors and myself are. Diagnosed with a deadly disease, but able to live a fairly normal life because it had not metastizised and the surgery got it all. Not all are that lucky

It was a reality check moment. We can take nothing for granted.

Icemantoo

dhs1963's picture
dhs1963
Posts: 394
Joined: May 2012

With lung cancer, which is more agressive, there are treatements.  Toxic treatments, yes.  But treatments.  With the less aggressive kidney cancer, the best treatment is whack-a-mole.  Remember the pain of the nephrectomy.  Now, think of it one or two times per year.  The Dr's tell me they can manage the cancer this way, but each surgery is 6 month+ healing.  I am 9 months from wedge resection, and my left side is burning from neuropathic pain.  My right side aches at the site of my nephrectomy 17 months ago.  If al goes well, I have 30+ more years of this, as I turn 50 next month.

Lucky is not the word to describe this.  The only cure:  HD-IL2 is toxic and less than 50% sucessful; it is used only when whack-a-mole can not work. 

When I thought I had stage 1, I felt fortunate. 

What I do feel fortunate about is to live when cardiac procedures are trivial.   Instead of a third major surgery (Cardiac Bypass), the stent & angioplasty was done outpatient, and I was fine a few days later.

 

 

srbelle1
Posts: 123
Joined: Jul 2013

just because there are chemo treatments for lung cancer does not make it any less fatal; I have lost two friends to this disease in the last year and 3 in the last 5 years.

i have lost two very close friends to breast cancer despite chemo and stem cell transplants which were horrific.

Iceman, you are a lawyer? So am I but I am still in practice.

sarah

dhs1963's picture
dhs1963
Posts: 394
Joined: May 2012

Chemo is taking poison and hoping it kills the cancer before it kills you.  What I was saying is I would rather have chemo for a while, then NED compared with the current whack-a-mole approach.  Surgeries have there own downside too.  Now, if I find myself without any recurrances going forward (i.e., no more whack-a-mole) that would be better than chemo.  I was 48 when diagnosed.  I have no risk factors -- except genetics.  Dad had no risk factors execpt genetics....grandpa, well, I am not so sure, but I suspect it was genetics -- he died of the cancer.  Great grandpa, no risk factors that I know of (his tumor was found in his last days, and had nothing to do with his death).

I wish there were better treatment options, or ways to tell if there is any disease lurking.  My Dr's -- among the best in the business -- thell me there probably is cancer in my body, but they can not attack it until they see it.  NED means they can't see it, and cancer too small to detect is not dangerious until it grows.  That is why we get scanned.

Meanwhile, I am dealing with this serious medical condition.  I have a family that I am the sole wage earner for.  I make decnt money, and work has been great (I am in a small field, only 3 other people could do my job), and I do what I love.  But, I worry about my 11 yo: does she have the unknown cancer gene, or is the cancer caused by our BRCA1 gene?  If something happens to me, what will happen to her?  She could be ok financially, but might have to move from our high cost of living area with great schools (Northern Virginia) to a lower cost area.  However, my insurance is through my company.  I can roll that into a private plan, but I can not buy private insurance.  If something happens, and I am not able to work, but do not qualify for disability, what happens? 

So, no, I don't feel lucky with Kidney Cancer.

David

  -- almost 50,

icemantoo's picture
icemantoo
Posts: 1658
Joined: Jan 2010

Dave,

 

I think you misread my post. I did  not say I felt lucky to have Kidney Cancer. I said I felt lucky to have Stage i Kidney Cancer with so many having a much tougher journey.

 

Icemantoo

GSRon's picture
GSRon
Posts: 1306
Joined: Jan 2013

Hi All...  something that you may not be aware of... that Cancer is listed by the Governemtn as a Disability.  Although (and likely you) do not feel disabled, we in a way are.   This has some important benefits, which include Social Security payments, Medicare and more...  here are some links...

http://www.ssa.gov/  this is a general Social Security site.

https://www.disability.gov/resource/who-decides-if-i-am-disabled/  info on disability

http://www.ssa.gov/disability/professionals/bluebook/AdultListings.htm  This is a list of eligible disability listings.. note Caner is under 13.00

http://www.ssa.gov/disability/professionals/bluebook/13.00-NeoplasticDiseases-Malignant-Adult.htm  This shows ll the Cancer listings

http://www.ssa.gov/disability/professionals/bluebook/13.00-NeoplasticDiseases-Malignant-Adult.htm#13_21  This shows Kidney Cancer speciffically..

In my case, I have not one but two listed disabiities with my mRcc and my blood disease..   Also each state may have additional benefits..

Ron

a.oakley
Posts: 32
Joined: Oct 2012

Ice:  I am glad that you posted the comment regarding Stage 1.  I was a lurker here for a long time and that was due to my husband being diagnosed at Stage 4 and they did not want to remove the tumor.  I just felt like we did not belong and were not part of the group.  Believe it or not I would go to the oncology appointments and tell the docs that "everyone" has their kidney tumor removed!!!  It seemed to me that there was noone like us and I felt we were doomed.  It's quite difficult to write about Stage 4 and what it feels like for the patient and the caregiver.  Certainly we did not have a positive attitude that I thought was a requirement here.  We are feeling better now that the third medicine we have tried is finally working and after one year of living with a growing tumor it finally got removed.  Now we feel more positive.  It does take time to adjust to the diagnosis of cancer with mets (especially when the majority of people are having a nephrectomy and the docs don't want to do surgery on you because of Stage 4). 

dhs:  I truly appreciate your comment regarding finances, fears, lifestyle changes.  It's something I just don't see anyone address.  We are living it too.  We are selling off our treasures and having to sell our home.  We are being devastated by this illness.  Using up our savings etc..  Everything that we planned is totally screwed up.  What were we thinking?  That we were in charge of our lives?  Ha!  Not so.  We pray that a cure will be found or more effective drugs will be made available. 

icemantoo's picture
icemantoo
Posts: 1658
Joined: Jan 2010

dhs, Sarah, GSron, a.Oakley,

 

The purpose of my post was not only to suggest that those of us with Stage 1 Kidney Cancer were lucky, but to keep in mind the more difficult paths that many of our fellow kidney Cancer survivors are on.  That is why I called it Reality Check because it made me focus a little more on all of us not just the lucky ones. 

Someday somewhere they will do a better job of screening Kidney Cancer earlier so there is less Kidney Cancer and more of the survivors have not gone past stage 1.

 

 

Icemantoo

a.oakley
Posts: 32
Joined: Oct 2012

Yes!  A screening test would be extremely helpful.  We would love to be Stage 1.  Isn't that a weird statement?  I would love to hear "we got it all!!!!!".   Right now we are very pleased with "not metabolically active".   When my husband was initially diagnosed, a number of doctors told us how lucky he was to have kidney cancer now when there are the targeted therapy agents.  We were told that these drugs are quite recent developements.

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