"the good news is that if you had to get cancer, you got the best kind"

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davidg
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Date Joined Feb 2011
Total Posts : 4093
   Posted 3/30/2011 10:30 PM (GMT -6)   
how man of us heard these words from our urologist the day we found out?

those words didn't help me any. I couldn't even talk for the first hour.

Well they're right though.

My sister in law ( 41 ) has been fighting a really hard battle with cancer. Her goal was to live as long as possible to see her kids grow as much as possible. Her children know nothing but battling cancer as a consequence. They've been raise din that environemnt.

Today we found out she has gotten Neoplastic Meningitis. This is the prognosis and should make us realize that those words we hear have some veracity to them:

The median survival time of untreated patients with NM is 4–6 weeks, and death generally occurs because of progressive neurological dysfunction [7]. Treatment is intended to improve or stabilize the neurological status, maintain the neurological quality of life, and prolong survival. Fixed neurological defects are rarely improved with treatment, but progression of neurological deterioration may be halted in some patients and the median survival time can be increased to 4–6 months [16]. Of the solid tumors, breast cancer responds best, with median survival times of 6 months and 11%–25% 1-year survival rates [26, 55]. Numerous prognostic factors for survival and response have been looked at (age, gender, duration of signs of NM, increased protein or low glucose in CSF, ratio of lumbar/ventricular CEA, etc.), but many remain controversial [55]. It is commonly accepted, however, that patients will do poorly with intensive treatment of NM if they have a poor performance status, multiple fixed neurologic deficits, bulky CNS disease, coexistent carcinomatous encephalopathy, and CSF flow abnormalities demonstrated by radionuclide ventriculography. In general, patients with widely metastatic aggressive cancers that do not respond well to systemic chemotherapies are also less likely to benefit from intensive therapy [56, 57]. What appears clear is that, optimally, NM should be diagnosed in the early stages of disease to prevent progression of disabling neurological deficits, analogous to the clinical situation of epidural spinal cord compression.

Tigerfan53
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Date Joined Jan 2011
Total Posts : 929
   Posted 3/31/2011 2:35 AM (GMT -6)   

David – so sorry to hear about your sister in law.  She will be in my prayers tonight.

 

“If you had to have cancer … you got the best kind.”  My urologist did not say this to me, but my minister did.  Shortly after my diagnosis.  Before my “education” about PC.  At the time, I was not sure what to make of the comment.  To be honest, I was a little offended, as though he was minimizing my anguish.  Then as I learned more and more about PC, I came to realize the truth and wisdom of that statement. And I thought, in his position, he has seen the effects of all types of cancers and disease on people in his many years as a minister.  So, in hindsight, his comment was meant to comfort and was spot on.


Age 53
Diagnosed Dec 2010
PSA 5.3
Biopsy: 50% in 1 of 12 cores, Gleason 6
RRP scheduled for 6/6/2011

142
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Date Joined Jan 2010
Total Posts : 6980
   Posted 3/31/2011 7:56 AM (GMT -6)   
I completely disagree.
 
In a case of a lower severity PCa that never returns, perhaps the statement is correct. However, for us Gleason 9 & 10 guys, you are uttering fighting words.
 
I'll stop there, in deference to the moderators.

davidg
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Date Joined Feb 2011
Total Posts : 4093
   Posted 3/31/2011 8:17 AM (GMT -6)   
of course there is a difference. Wasn't trying to minimize the severity of advanced pc. But even with that we all have a really good fighting chance. She has none at all. She was given a hospice card 7 years ago, changed hospital and has been deteriorating on a daily basis ever since until yesterday when she was essentially given a deadline she can do nothing about even with treatment. Cancer sucks.

142
Forum Moderator


Date Joined Jan 2010
Total Posts : 6980
   Posted 3/31/2011 8:28 AM (GMT -6)   
Never said Cancer didn't suck. I'm on my third. Yes, I agree that some are much worse, and you're gone in a heartbeat. That has happened in my family.
 
I feel for you and yours, but I still disagree completely with the generalizations that lead to the original statement. It is inconsiderate at best, and those who repeat it are clueless.

Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25380
   Posted 3/31/2011 8:32 AM (GMT -6)   
If someone said that to me, I would stare into their eyes, pull my lips out with my fingers, and bleat loudly at them like a sheep. Then simply walk away. After surviving 4 bouts of serious cancers, so far, I don't even dignify any ignorant remark like that with a real answer.

On the serious side, have them visit a hospice house so they can watch someone die of advanced prostate cancer.
Age: 58, 56 dx, PSA: 7/07 5.8, 10/08 16.3
3rd Biopsy: 9/08 7 of 7 Positive, 40-90%, Gleason 4+3
open RP: 11/08, on catheters for 101 days
Path Rpt: Gleason 3+4, pT2c, 42g, 20% cancer, 1 pos marg
Incont & ED: None
Post Surgery PSA: 2/09 .05,5/09 .1, 6/09 .11. 8/09 .16
Post SRT PSA: 1/10 .12, 4/8 .04, 8/6 .06 2/11 1.24
Latest: 6 Corr Surgeries to Bladder Neck, SP Catheter since 10/1/9, SRT 39 Sess/72 gy ended 11/09, 21 Catheters, Ileal Conduit Surgery 9/10,

Casey59
Veteran Member


Date Joined Sep 2009
Total Posts : 3172
   Posted 3/31/2011 9:02 AM (GMT -6)   

davidg, I'm very sorry to hear about the new progression in your sister's case.  She has obviously had some positive factors working in her favor which have helped push her to the right side of the survival curve, and I truly hope that will continue to be beneficial for her.  [Just last night I posted in another thread a little explanation about statistics and the survival curve; if you haven't seen that, go to this LINK and read about 5 posts down...might be information you already know, might not.]

Regarding the comment in the title of this thread, a lot of people who never had PC look at this as the reality, while a lot of men with PC feel belittled by the way it's worded.  I've found another way to restate the same reality with more palatable words:  "Prostate cancer is among the more common and less lethal malignancies, yielding a large population of survivors."  Overall survival across the board is very high (around 97%, or higher), and while that still means that across a very large population there will be thousands who die from PC, there are likely others who might make the comparison to other cancer cases (like your sister) and be relieved that their case is indeed a “less lethal” type of cancer.

 

 


BobCape
Regular Member


Date Joined Jun 2010
Total Posts : 416
   Posted 3/31/2011 9:15 AM (GMT -6)   
So sorry to hear of your sister in-law. Very.

One of my drs did say that to me. I didn't like it.
It is usually said of course, at the same time you are told you have cancer.

30,000 Americans alone will die this year from this disease. Neither they, nor their extended loved ones considers that 'good news" nor the "best" of anything.

That said, as a statistical statement that might be be true. But as 142 rightly notes, there is indeed different levels of this disease. If i'm lucky enough not to die from this disease, or only do so 20 years down the road, I will still have paid a HUGE price through surgery, radiation, disconnecting tubes, sexual, financial, etc...

Ultimately, the person making the statement does not have that right. They cannot know when they make it how the recipient's disease might progress, what pain, what price, what ending awaits.

To say instead "statistically, many people have a better prognoses with this type of cancer many others", might be a better route. It may be the lessor of many evils, but it is still evil, and often deadly.

Otherwise, it reminds me of the no-win question "do you enjoy beating your wife?".

Prayers to your sister in law, regardless of this question.

BobCape
Regular Member


Date Joined Jun 2010
Total Posts : 416
   Posted 3/31/2011 9:22 AM (GMT -6)   
97%. I guess that's because 1 in 6 will eventually get it. And the median age of dx is 69, so many die with it and not from it. You feel worse for a guy who survives another 10 years or so, when he gets pca at 42, then a guy who has 10 years left who is 72.

So that 97% is inherently flawed.

Hows this for a grand generalization:

200,000 in US will be dx with pca this year.
30,000 in US will dies from pca this year.
We are currently trending at 85% DX TO Death.

Take all the other guys that WOULD have dued from it, but ran out of time, and it is alot worse than 85.

Is how my thinking goes. Generally speaking.

Tudpock18
Forum Moderator


Date Joined Sep 2008
Total Posts : 4181
   Posted 3/31/2011 9:28 AM (GMT -6)   
After reading the many heart breaking stories on HW  and YANA of men with PCa, I think the statement is inconsiderate at best and ignorant at worst.  I would never say it and I would correct anyone who said it in my presence.
 
Tudpock (Jim)
Age 62 (64 now), G 3 + 4 = 7, T1C, PSA 4.2, 2/16 cancerous, 27cc. Brachytherapy 12/9/08. 73 Iodine-125 seeds. Procedure went great, catheter out before I went home, only minor discomfort. Everything continues to function normally as of 12/8/10. PSA: 6 mo 1.4, 1 yr. 1.0, 2 yr. .8. My docs are "delighted"! My journey:
http://www.healingwell.com/community/default.aspx?f=35&m=1305643&g=1305643#m1305643

DaSlink
Veteran Member


Date Joined Feb 2011
Total Posts : 713
   Posted 3/31/2011 10:03 AM (GMT -6)   
I have been told several times"Prostate cancer, that's no big deal". I just look at them and say "Seriously? All cancer is a big deal. Try having some one scoop out your insides, live with a catheter,Not be able to control your pee, be sexually non functional,and then if your lucky under go radiation treatments or hormone treatments. Then tell me its No Big Deal!"
As far as common cancers go, PCa is the least talked about.Awareness is a huge problem.You don't see a big production made of it like you do for example breast cancer. Until 5 months ago, I never gave it a second thought.
By the way,since it's a man's disease,why did they give us a baby blue ribbon? Seriously.....Baby Blue!
Every minute you fish or ride,adds an hour to your life!

Age 52 Dx age 53 daVinci surgery
prostate volume 32 grams
Biopsy 12 cores with 7 positive
Gleason score of 7
1st PSA 38.7 10/05/2010
2nd PSA 49.9 11/23/2010
CT neg.
BS Negative
RRP on 01/25/2011
PT3a -40% involved
margin involved-Left anterior
lymph nodes -clear
1st post op PSA-0.26-03/16/11

F8
Veteran Member


Date Joined Feb 2010
Total Posts : 3835
   Posted 3/31/2011 10:12 AM (GMT -6)   
people don't know what to say and they want to comfort you. give 'em a break.
 
ed
 
 
age: 56
PSA on 12/09: 6.8
gleason 3+4 = 7
HT, BT and IGRT
received 3rd and last lupron shot 9/14/10
2/8/11 PSA <.1, T= 6 ng/dl

April6th
Regular Member


Date Joined May 2010
Total Posts : 264
   Posted 3/31/2011 10:54 AM (GMT -6)   
"the good news is that if you had to get cancer, you got the best kind"

I would never say this to anyone, knowing the wide spectrum of severity of PCa, and nobody said it to me. Maybe a more polite interpretation though.

But, a week or so after my diagnosis after I realized my case was at the mild end, I said it to myself many times to try and reduce the anxiety and also said it a lot to my friends and relatives once they heard my diagnosis and I had to reassure them or keep them from being upset. My father died of PCa so I think, some people thought that was my fate too.

This is slightly off topic but related: I was kind of surprised after I got my diagnosis that I was the one who had to console and reassure my circle of friends and relatives. I kind of expected it to be the other way around.

Dan
Here are some of my stats:
Age:54
Father diagnosed with PC at age 72 - wasn't contained to prostate when found in 1992.
My PSA rose from 3.2 to 5.1 over the course of 1.5 years with Free PSA at 25% for the last two tests.
DRE showed no evidence of tumor but Uro thought my prostate was a little large for someone my age
PCa diagnosed 4/6/10 after biopsy on 4/1/10
1 out of 12 biopsy samples was positive with 5% of biopsy sample cancerous
Gleason 3+4
Da Vinci surgery on 6/1/10
Pathology report shows cancer confined to prostate and all other tissue clean
PSA tested on 7/15/10: Zero Club membership card issued (trial membership with 90 day renewal)

lennybob
Regular Member


Date Joined Dec 2010
Total Posts : 99
   Posted 3/31/2011 10:55 AM (GMT -6)   

I am always amazed at the things people say. I truly believe that they mean well and they think they are helping. When my wife and I miscarried about 15 years ago I lost track of the well wishers that told me that we could always “try again”.  As it turned out, we really couldn’t “try again”, it was nothing short of miraculous that we conceived in the first place, as it turned out we both had fertility issues and she was never able to conceive again. I am yet to know how that advice helped me. However, one of her doctors gave me some pretty sage advice. He said that people always feel the need to be the one who “fixes” this for you, that by somehow telling you this that it will make everything OK. His advice to me was to not be too judgmental and realize that they usually mean well and not be too harsh on them. It helped me get through a difficult time and I’ve tried to use that same logic about having PC. It is a challenge though when someone uses their infinite wisdom to tell me how lucky I am☺

My prayers will be with your sister-in-law. I can’t imagine what she must be going through.

Lynn


Age 53...51 when diagnosed.
February/09 PSA 11...GP discoverd during yearly physical...referred to Urologist
Biopsy found cancer, Gleason score of 6.
July 2009...Nerve-Sparing open radical prostatectomy.
Doing very well...only issue is ED and that is getting better.

DaSlink
Veteran Member


Date Joined Feb 2011
Total Posts : 713
   Posted 3/31/2011 5:02 PM (GMT -6)   
Lynn;
What you said makes some sense, and I may still be a little angry about the whole situation.
Every minute you fish or ride,adds an hour to your life!

Age 52 Dx age 53 daVinci surgery
prostate volume 32 grams
Biopsy 12 cores with 7 positive
Gleason score of 7
1st PSA 38.7 10/05/2010
2nd PSA 49.9 11/23/2010
CT neg.
BS Negative
RRP on 01/25/2011
PT3a -40% involved
margin involved-Left anterior
lymph nodes -clear
1st post op PSA-0.26-03/16/11

DJBearGuy
Veteran Member


Date Joined Dec 2008
Total Posts : 757
   Posted 3/31/2011 6:05 PM (GMT -6)   
Lynn,

After we had our miscarriage at 5 months, the hospital gave us a pamphlet, whose title was something like "Thoughtless hurtful things people will say to you now that you've had a miscarriage, even though they mean well." I'm very grateful for that pamphlet, because within 36 hours, people said every one of those idiotic things to us, more than once. And they sincerely mean well.

I suppose we could write something similar for what people say to you when they find out you have prostate cancer. The particular statement here makes no sense--it's not a buffet where you can say I'll take the prostate cancer but I think I'll skip on lung and pancreatic cancer. Nor does getting prostate cancer mean that you won't get one of those other cancers.

DJ
Diagnosis at 53. PSA 2007 about 2; 2008 4.3
Biopsy Sept 2008: 6 of 12 cores pos; Gleason 4+3 = 7
CT & Bone scan neg
Da Vinci at City of Hope Dec 8, 2008
Rad prostatectomy & lymph node dissection
Cath out on 7th day, in on 8th day, out again 14th day after neg cystogram
Path: pT2c; lymph nodes neg; margins involv; 41 grams,
PSA 1/08, 4/09,7/09, 10/09, 11/09,2/10 <0.01, 10/10 0.1, 2/11 0.08

cyclingboy
Regular Member


Date Joined Feb 2011
Total Posts : 32
   Posted 3/31/2011 6:40 PM (GMT -6)   
"
This is slightly off topic but related: I was kind of surprised after I got my diagnosis that I was the one who had to console and reassure my circle of friends and relatives. I kind of expected it to be the other way around. said...


Dan, I agree with that one. I think when I was diagnosed and then going through surgery, I tried really hard to hold it together so that everyone else would see that I wasn't worried and they would stay calm. heck, the morning I got my diagnosis, I was in a customer meeting 30 minutes later.

A few months later I am realizing that as hard as I tried to not admit it, I was probably scared as hell - I get way more emotional now at the slightest thing, and I find I am going through a pretty rough mid-life crisis. Even though I'm improving every day, getting back to exercise, etc, there isn't a day that I don't think about how I feel like a broken down piece of crap; or that I do the math on how many months to my next PSA test. this cancer blows, all cancers blow.

My prayers are with your sister in law DavidG


AB
AB
age 45
PSA 9/2010 = 4.2
biopsy 11/2010 - 3/12 cores positive, Gleason =3+3, 5% volume in positive cores
RP 2/1/2011
post-op path Gleason 4+3, organ confined, lymph nodes clear
waiting for follow-up PSA in 3/2011

davidg
Veteran Member


Date Joined Feb 2011
Total Posts : 4093
   Posted 3/31/2011 8:13 PM (GMT -6)   
thanks everyone.

Cyclingboy - what do you mean there isn't a day you don't feel like a broken down piece of crap? You think that's solely inked to having had cancer? I feel completely destroyed/fatigued everyday but I don't know for sure why. We're aged perfectly for a mid life crisis and whatever it is, I think I've been having one for 2-3 years and just happened to get cancer in the middle of it.

"the good news is that you got ..." that's what my urologist said. I prefer what my surgeon said. he said it's curable and you'll be fine. he based this on my numbers. I don't know if it's true or not but I liked hearing it.

I joke about it with friends but I had the luxury of being able to break down with family (wife, sister, dad ). I kept it togethe rmore for my mother because she was worse off than I was about it.

I completely minimized it with the kids.

davidg
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Date Joined Feb 2011
Total Posts : 4093
   Posted 3/31/2011 8:34 PM (GMT -6)   
ps -the news today is that besides the meningitis, she also has a new tumor, in the pancreas. They think this is a new cancer altogether because they said breast cancer doesn't travel to the pancreas.

She star with breast, then lymph nodes, then liver, then brain, then bone. now meningitis and pancreas.

4 years ago while visiting, before she had any of the effects from too much radiation/chemo she told me "i just want to hang around as long as possible to try and be there until the kids are old enough to be able to handle it"

Her kids aren't good. My nephew (13) goes to sleep on the floor besides her bed at night. He sneaks in alone after they've already gone to bed. The kids still have hope. even now they think she's in the hospital because of a problem with her spine. They look at her with her palsy, her one eye sown shut and I can't imagine how they're being affected by it all.

My mother never got over the death of her mother by cancer. First off my grandmother turned to God in her last month and shut everyone out, including my mother who was only a teen. Then she passed the night my mother was sleeping in bed with her. Imagine waking up to a dead parent. Cancer is as tough on our loved ones as it is on us.

Worried Guy
Veteran Member


Date Joined Jul 2009
Total Posts : 3734
   Posted 4/1/2011 4:44 AM (GMT -6)   
I figure the people saying that statement don't know what else to say. They don't mean to be hurtful. I just cut them some slack.

What is the alternative? Make a big deal about it and start describing or asking about all the issues? Tell them all the statistics? Discuss my pee pad usage and the Trimix injections? Puhleeze! I just drop it.

This is another reason why I don't tell anyone.

Jeff
Age: 58, Mar 35 yrs, 56 dx, PSA: 4/09 17.8 6/09 23.2
Biopsy: 6/09 7 of 12 Pos, 20-70%, Gleason 4+3 Bone, CT Neg
DaVinci RP: 7/09, U of Roch Med Ctr
Path Rpt: Glsn 3+4, pT3aNOMx, 56g, Tumor 2.5x1.8 cm both lobes and apex
EPE present, PNI extensive, Sem Ves, Vas def clear, Lymph 0/13
Incont: 200ml/day ED: Trimix
Post Surg PSA: 10/09 .04, 4/10 .04, 7/10 <0.01, 12/10 <0.01
AdVance Sling 1/10/11 Dry

DaSlink
Veteran Member


Date Joined Feb 2011
Total Posts : 713
   Posted 4/1/2011 9:49 AM (GMT -6)   
I think I really only lashed out at 1 person.A kind of pompous azz in our group that no one really likes but we all like his wife. A few minutes later I apologized. It was about the third time I had heard it that day. Like I said, I may still be a little angry about this whole ordeal!
Every minute you fish or ride,adds an hour to your life!

Age 52 Dx age 53 daVinci surgery
prostate volume 32 grams
Biopsy 12 cores with 7 positive
Gleason score of 7
1st PSA 38.7 10/05/2010
2nd PSA 49.9 11/23/2010
CT neg.
BS Negative
RRP on 01/25/2011
PT3a -40% involved
margin involved-Left anterior
lymph nodes -clear
1st post op PSA-0.26-03/16/11

Ger42
Regular Member


Date Joined Apr 2010
Total Posts : 189
   Posted 4/1/2011 10:37 AM (GMT -6)   
My dad died 15 yrs after his diagnosis of PC. I guess if I had to choose I'd take PC over the pancreatic cancer that took my brother in 10 months.

People can be cruel. We lost our daughter at the age of 13. She had Cerebral Palsy. She had a spinal operation to help remove some of the muscle spasms in her legs that prevented her from walking and were pulling her leg bone out of the hip socket.

She is in a better place!
You'll forget it over time!
God only gives you what you can handle!
You'll have to get over it everyone dies some time!
Age 68 weight 185 height 6'
Samples taken 4/19/2010 sent to Bostwick
3 out of 12 samples cancer
1) gleason score 3+3 involving 65%
2) gleason score 3+3 involving 65%
3) gleason score 3+3 involving 10%
PSA 3.5 Mar 19
PSA 2.5 Apr 4
Bone scan clean CT scan clean
Da Vinci 10/12/2010 DR Paul Kahn all nerves spared
Home 10/19/20
Cath out 10/22/2010
Prostate 56 gm. Gleason grade 3+4 = 7
2 MO PSA 0.0

rob2
Veteran Member


Date Joined Apr 2008
Total Posts : 1131
   Posted 4/1/2011 10:45 AM (GMT -6)   
Sorry to hear your news.  I would say no cancer is good.  My uro even said that prostate cancer was "better some some other cancers".  Even if you are in remission, no one knows what goes through your mind after diagnosis and beyond.  I hate to admit it but I think about cancer and future PSA's tests probably more than I should....

clocknut
Veteran Member


Date Joined Sep 2010
Total Posts : 2670
   Posted 4/1/2011 11:10 AM (GMT -6)   
Ger42: so much tragedy and sorrow and loss in your life. I'm very sorry.
I work part-time at a funeral home, and all I can say is that most people don't mean to be cruel. They mean well, and they are trying so very hard to find words of consolation. That's very difficult, and so we all sometimes resort to platitudes that we've heard and hope that our feelings of sorrow are conveyed.  This evening, we're having a visitation for a 20-year-old young man who died unexpectedly while using a treadmill at a local fitness center.  What one earth does one say to his mother and father?

I must say, though, that I cringe every time the news media start talking about "the healing process" after a family suffers a tragedy. Certain losses never "heal."

Post Edited (clocknut) : 4/1/2011 11:50:47 AM (GMT-6)


DaSlink
Veteran Member


Date Joined Feb 2011
Total Posts : 713
   Posted 4/1/2011 2:42 PM (GMT -6)   
My father passed away around 1 1/2 years after he was Dx with brain cancer. He had 12 siblings and 6 of them has died from cancer. Either brain(2) or lung(4). Except for 1 all were smokers. No PCa !
In a way I must have been pre-determined to contract some kind of cancer. Out of over 100 cousins(lost track after 100)so far I'm the lone wolf. I thought may be it was just a generational curse.
Every minute you fish or ride,adds an hour to your life!

Age 52 Dx age 53 daVinci surgery
prostate volume 32 grams
Biopsy 12 cores with 7 positive
Gleason score of 7
1st PSA 38.7 10/05/2010
2nd PSA 49.9 11/23/2010
CT neg.
BS Negative
RRP on 01/25/2011
PT3a -40% involved
margin involved-Left anterior
lymph nodes -clear
1st post op PSA-0.26-03/16/11
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