Is your life worth the fight?

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hiker
Posts: 139
Joined: Thu Aug 09, 2018 10:15 am

Is your life worth the fight?

Postby hiker » Tue Feb 05, 2019 10:17 am

Once again I come to this board share a story.

One year ago a friend of mine came to me and asked if I would speak to a friend of theirs about my cancer journey. This person had been diagnosed with stage 3 colon cancer about 5 years ago. Recently, the cancer came back and spread...now she was stage 4 and really scared. I spoke with her last February and learned she was working with a local oncologist who had done nothing but chemo - surgery was not even considered (if you care to know what the local doctors are like where I live you can search my posts). I urged her to get to MSK in NYC for a consultation. But she gave me the recurring statement I've heard from too many people..."I like my oncologist."

I'm not sure if she was more scared of the cancer or the thought of going into a big city. She didn't want to make that trip, so to get her to go I agreed to accompany her and show her how to get there and get around once there. She finally agreed to go. We made the trip and MSK started running tests...many tests. Since she had never been under the care of doctors who really wanted to find out the whole picture and get a game plan for making her well, she got frustrated. And then the excuses came; "It's too much to go through. Going up there is really difficult for me. I liked my old oncologist." So she gave up on MSK without even letting them finish getting their plan in place.

She stopped in yesterday afternoon to visit. It's the first time she's been back to work since October. She's been on 3 different chemo cocktails since going back to the oncologist she likes so well...and the cancer has spread further. She now has only months to live.

Anyone who thinks all oncologists and cancer centers are the same is sadly mistaken. I don't care how much you like your current oncologist, if they're not talking cure and they don't have a plan in place to get you to NED...DUMP THEM and get a second, third, or fourth opinion. You're fighting for your life.

hiker
Colonoscopy 2/17, 5cm tumor descending
Diagnosed stage iv, liver mets 3/17
Colon resection 3/17
Told surgery not an option, get my affairs in order
Meet w/MSK team 5/01/17
Folfox(3rds) 5/17-6/17
Liver resection/implant HAI pump 7/17
HAI pump chemo(5rds) 8/17-2/18
Folfiri+Vectibix(11rds) 8/17-2/18
Spot on chest CT 10/17
Lung biopsy (that was fun) 11/17
Nocardia bacterial infection w/spread to brain (this is serious) 11/17
IV antibiotics 12/17-2/18
Oral antibiotics 3/18-12/18
Clear of cancer since surgery

Mohrfamily
Posts: 267
Joined: Tue May 22, 2018 4:04 pm

Re: Is your life worth the fight?

Postby Mohrfamily » Tue Feb 05, 2019 11:29 am

Amen! I listened got the message loud and clear and while DH hates NYC he's committed to flying in getting a cab and flying home.

He rolls his eyes when I talk about this board, he's very private, but listened actively...intently and likes the vibe of MSK!
DH dx stage IV liver mets largest 6x6.4 cm
Colonoscopy/endoscopy/port place 5/29
4cm mass in splenic flexure
1st round FolFox 5/30
08/2018 new CT no new lesions, clear lungs, slight decrease in colon.
3/2019 PET scan shows greater than 6-7 liver mets largest measuring 3x3 cm. No growth nothing new.
8/15/19 largest liver lesion 1.9x2.1
9/16/2019 OSU to proceed with surgery implant HAI and colon resection
11/19 resection of colon HAI placed
2/20 CEA back to 1000s, liver worse than when we began-start FOLFIRI

Lee
Posts: 6207
Joined: Sun Apr 16, 2006 4:09 pm

Re: Is your life worth the fight?

Postby Lee » Tue Feb 05, 2019 11:30 am

hiker wrote:Once again I come to this board share a story.
. . . But she gave me the recurring statement I've heard from too many people..."I like my oncologist."

hiker


Yes I hear you. I know of 2 people who died last year who only got treatment at a local hospital because they liked their oncologist. They were both being treated at the same center.

When I was diagnosed, I asked my surgeon would she be offended if I got a 2nd opinion. She say no, recommends that it is excellent idea. I could find someone on my own or she would gladly refer me out. I called The Mayo Clinic, they called me back and I learned my treatment plan was standard care for my stage and diagnoses. I was happy.

My friend, when he was told he had cancer, he had to wait 3 month for surgery. No treatment plan during that 3 month wait. I encouraged him to get a 2nd opinion. No he really liked his Onc. By the time he got into surgery, it was too big to remove. Chemo radiation was his only choice. Again I encouraged getting a 2nd opinion, no he felt he was in good hands. From the time of his diagnoses, to the time he died, just under a year. During that time, he lost over a 100 pounds. I question if they hurt him more rather than helping him. He suffered.

The other I knew, butt heard more from the close friend. Stage IV colon cancer. I would be glad to talk to them, no they felt he was in good hands. I encouraged they get a 2nd opinion at a major cancer hospital or research center because he was stage IV. Here in Phoenix, we have the Mayo Clinic and Cancer Treatment Center of America. Not to mention a few other large cancer type hospitals. No they really the Dr.(s) they were seeing at this local hospital. 6 months of FOLFOX with Avastin. Surgery was not an option. He responded well to chemo, lots of shrinkage. Again, please get a 2nd opinion at a major hospital, no he's already been told surgery is not an option. Cancer came back after of few months off chemo. They were going to try a different chemo, was told they could keep him alive for about 1 1/2 yrs. He was dead with in 2 weeks. From the time of his diagnoses to death, about 9 months.

I've come to learn, not all doctors graduate at the top of their class nor do all doctors keep up with the last technology.

It can be frustrating, butt we can only do what we can. So sorry to hear about your friend.

Lee
rectal cancer - April 2004
46 yrs old at diagnoses
stage III C - 6/13 lymph positive
radiation - 6 weeks
surgery - August 2004/hernia repair 2014
permanent colostomy
chemo - FOLFOX
NED - 16 years and counting!

stu
Posts: 1613
Joined: Sat Aug 17, 2013 5:46 pm

Re: Is your life worth the fight?

Postby stu » Tue Feb 05, 2019 12:30 pm

Hi ,
I am absolutely convinced some people would investigate a car purchase more than their very pressing health needs . I communicated with one lady who “ liked her team” and quietly dispaired as she moved from operable to inoperable . The nicest lady ever .
So it goes . Still put the message out but don’t expect a response. Delighted when it happens though .
Stu
supporter to my mum who lives a great life despite a difficult diagnosis
stage4 2009 significant spread to liver
2010 colon /liver resection
chemo following recurrence
73% of liver removed
enjoying life treatment free
2016 lung resection
Oct 2017 nice clear scan . Two lung nodules disappeared
Oct 2018. Another clear scan .

AmyG
Posts: 371
Joined: Tue Dec 25, 2018 8:08 pm

Re: Is your life worth the fight?

Postby AmyG » Tue Feb 05, 2019 12:45 pm

Damn.

I don't really even like my oncologist. :lol: However, she gets one shot to treat me aggressively as possible so I'm resectable. If she doesn't present me with a plan that is going to get me there, I'm out.

I have way too much to live for to deal with anybody's BS.
42 dx @ 9wks pregnant w/baby #8 8/18
Sigmoid colon resection 9/18
Adenocarcinoma, G2, T3N0M0..or so we thought
KRAS/BRAF wild
Liver biopsy is malignant, stage iv now boys!
Delivered healthy baby 3/19
FOLFOX + Avastin 5/19
CEA 167 to 24 after 4 rounds
Liver resection 8/28/19
NED!! CEA 2.3
CEA 5.8 idk wtf is up with that, but everything else is clear!
CEA 3.7 make up your damn mind...
CEA 1.5 that's a new low!

User avatar
O Stoma Mia
Posts: 1709
Joined: Sat Jun 22, 2013 6:29 am
Location: On vacation. Off-line for now.

Re: Is your life worth the fight?

Postby O Stoma Mia » Tue Feb 05, 2019 1:01 pm

Lee wrote:... I've come to learn, not all doctors graduate at the top of their class nor do all doctors keep up with the last technology.

This is so true!! Three of my past doctors were in that category, but I'll spare you all of the details.

I'll just say that, in my opinion, it is very, very important to check up on the qualifications and experience of each doctor in charge of treating you. It's your life that's at stake.

Gravelyguy
Posts: 382
Joined: Thu Jul 05, 2018 6:03 pm

Re: Is your life worth the fight?

Postby Gravelyguy » Tue Feb 05, 2019 5:19 pm

Great message Hiker,

I had my chemo done at my local hospital but Mayo called the shots. I felt bad for my local oncologist. He was busy with patients every time I went in for an infusion. I have several people I know who see him. We all have/had different types of cancer and he was supposed to give us all the latest and greatest care?!?! He barely had a chance to breathe.

My oncologist at Mayo not only just sees colorectal cancer patients, but specializes in stage 3-4 colorectal cancer!

My local oncologist was fine but why would I not find the best, most specialized care?

Dave
6/17 dx mRC t3n1m1 very low rectal tumor 2 liver Mets 1.3 cm and .9 cm

6/17 begin 4 rounds Folfox w/Vectibix
9/17 short course radiation
10/17 rectal and liver resection LAR with coloanal anastomosis (no rectum left)
11/17-3/18 8 rounds Folfox
6/18 still NED!! Takedown
8/28/18 still NED! CEA .8 new low for me
10/18/18 colonoscopy clear
12/12/18 CEA .9 still NED!
6/11/19 CEA 1.0
12/19/19 CEA 1.0 still NED!
6/17/20 CEA 1.1 still NED!
12/15/20 CEA 1.1still NED!
12/16/21 CEA 1.2 still NED!

heiders33
Posts: 363
Joined: Sat Nov 04, 2017 11:08 am

Re: Is your life worth the fight?

Postby heiders33 » Tue Feb 05, 2019 6:40 pm

You know I agree with you, hiker! Thanks for that message.
40 year-old female
May 2017: Dx rectal cancer T3N2M0
MSS, KRAS G12D
6/17: 28 days chemorad
9/17: LAR/loop ileostomy, CAPOX six rounds
3/18: reversal
9/18: liver met, resection/HAI pump, 11 rounds 5FU, 1 round FUDR
11/19 - local recurrence, brachytherapy, 3 weeks targeted radiation
12/21 - end colostomy

User avatar
CRguy
Posts: 10473
Joined: Sun Feb 10, 2008 6:00 pm

Re: Is your life worth the fight?

Postby CRguy » Wed Feb 06, 2019 1:08 am

Is my life worth the fight ?

WORD !!!!!

Word homies
ALWAYS

on the Journey
CRguy
Caregiver x 4
Stage IV A rectal cancer/lung met
17 Year survivor
my life is an ongoing totally randomized UNcontrolled experiment with N=1 !
Review of my Journey so far


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