Will they operate in more than one spot affected. Im so sad

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Trying
Posts: 250
Joined: Sun May 13, 2018 10:11 pm

Will they operate in more than one spot affected. Im so sad

Postby Trying » Tue May 29, 2018 10:01 pm

Again i am posting as my mind is consumed with. This stage 4cancer. Its only been a month and simetimes im even too down to play with my baby although there are some happy times in there too. If you read my last post you would see that the surgeon left me feeling rotten.
So many of you spent time sending positive feedback and response and thats whats really helping right now.

One thing im still not is that my lung surgeon ( whom i will be finding another one) said that as i have 10 inoperable liver tumors they wont operate if any tumors arw anywhere else. I know many of you have had your tumors shrink and disapear but have you had inoperable tumors removed feom liver and lung? I don't yet know if in my lung but feeling tgat with t he way things arw going the pet wilp show thwy are there too. I really appreciate experiece you habe had.

I cant beleive how much i post here. Im so overwhelmed and you are being a rock right now for me This is so freaking hard. I cant stop saying sorry to my family because they are doing everything helping look after my baby. I hope to get some positive answers and that you are all ok right now
38 yr old single mom of almost 2 year old at the time
April 2018 colon cancer stage IV 10 liver mets and peri met. Folfox and 12 rounds oxyplatin
Fec 2018 Down to 2 mets in liver. 8 dissapeared
July 2019 switched to xeloda pills as I prefer to 3 day infusion. Also on avistan
Oct 2019 emergency colostomy due to perforated bowel. ( unreal pain)
Feb 2020 show 2mm tumor increase.
Plan to go back on oxy
Oxy failed- irinotecan as of of Sept 2020

dauofcamom
Posts: 34
Joined: Sun Apr 22, 2018 7:11 pm

Re: Will they operate in more than one spot affected. Im so sad

Postby dauofcamom » Tue May 29, 2018 10:22 pm

Trying, I am so sorry you are going through this. Please, you have nothing to apologize for. Let your family and friends help you. From a caregiver’s perspective—because this disease affects everyone around you—there is an enormous amount of helplessness that your family and friends probably feel. Let them feel useful and help you so you can take the best possible care of yourself right now.
Long Distance Caregiver to 75 year old Mom
3/2018 - colonoscopy, DX malignant cecum mass
4/2018 - right hemi
Stage IIIC - T4bN1aM0
MSI High
5/2018 - Xelox Regime
10/2018 - peri Mets discovered
10/2018 - Start Keytruda every 3 weeks
12/2018 - scan all clear

Maddielolo
Posts: 140
Joined: Tue Apr 08, 2014 4:57 pm

Re: Will they operate in more than one spot affected. Im so sad

Postby Maddielolo » Tue May 29, 2018 11:55 pm

Firstly, you really need an opinion at a top cancer hospital if possible. Where do you live? Second, there are people who have had “inoperable” liver mets at diagnosis that are cancer free years later. Not easy and need some luck, but possible. Try not to get too far ahead of yourself. Get the diagnosis right, and then get a good plan set. Once you do, you’ll feel a little better. It is overwhelming especially with a young child, but it’s good you are seeking info and advice here. There are people who have been in similar shoes who will help.

Mercy110
Posts: 118
Joined: Wed Aug 16, 2017 12:13 am

Re: Will they operate in more than one spot affected. Im so sad

Postby Mercy110 » Wed May 30, 2018 12:04 am

Hello Trying.
Stage 4 is tough, and I know it as a caretaker of my mum.
My mum has gone through 10 Folfox and her lung mets are now stable. Surgeons told us it is incurable as there are multiple nudoles.
It is definitely disappointing and hard for us to accept the truth, but she is doing well right now, so we try keeping ourselves as happy as possible. We have travel together overseas so as to relax ourselves.

I saw cases with lung mets and liver mets become NED in US and Europe. There are skills like SATS and other surgeries that we in Hong Kong do not come across. Maybe those skills help.

Wish you all the best with your family and keep praying for you.
My Mum (age 56), NRAS-mutate Q61R (from HK)
2017-05: Surgery with stoma. T4N1M0. Stage3C. Xeloda Only. Increasing CEA. CT: Multiple lung nodules. Stage4.
2017-09: 85% FOLFOX + Avastin, stable CT
2018-03 to 05: Folfox Allergy, Folfiri (with Avastin since Oct)
2019: CEA:178, started Irinotecan+Zaltrip+TS-1, 25 times radio with xeloda
2020: CEA up, Stivarga for 6 months
2021: CEA up, 7L O2 and 24-hour morphine, on pc care
At peace 2021.4.14

stu
Posts: 1614
Joined: Sat Aug 17, 2013 5:46 pm

Re: Will they operate in more than one spot affected. Im so sad

Postby stu » Wed May 30, 2018 12:53 am

Hi ,
It is quite common to have a significant spread in the liver and for that to be the only spread . My mum did not have a lung met till seven years later . It’s easy when you have lost confidence in your health for that to roll out and think it’s gone other places but unless they have indicated the CT scan has areas of concern else where then right now that is the extent of your spread.

Take care,
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 .

michelle c
Posts: 1929
Joined: Wed Dec 02, 2009 3:58 am

Re: Will they operate in more than one spot affected. Im so sad

Postby michelle c » Wed May 30, 2018 10:46 pm

You need another opinion and someone who will treat you aggressively. I'm not sure where you are but I feel that you need to do this or have someone help you with it, especially as you are so young. I've heard lots of stories where one doctor offers no hope but another will.
May 25 2009 Dx with CC (sigmoid colon) 2 days after my 44th b'day
CEA prior to surgery 4.7
Jun 3 2009 LAR - Stage III 3/10 lymph nodes
Jul 6 - Dec 10 2009 - 12 cycles FOLFIRI
Genetic testing - inconclusive for Lynch
Jul 2012 port removed & hernia repair

User avatar
CRguy
Posts: 10474
Joined: Sun Feb 10, 2008 6:00 pm

Re: Will they operate in more than one spot affected. Im so sad

Postby CRguy » Wed May 30, 2018 11:35 pm

Trying wrote:Again i am posting as my mind is consumed with. This stage 4cancer. Its only been a month and simetimes im even too down to play with my baby although there are some happy times in there too. If you read my last post you would see that the surgeon left me feeling rotten.
So many of you spent time sending positive feedback and response and thats whats really helping right now.

One thing im still not is that my lung surgeon ( whom i will be finding another one) said that as i have 10 inoperable liver tumors they wont operate if any tumors arw anywhere else. I know many of you have had your tumors shrink and disapear but have you had inoperable tumors removed feom liver and lung? I don't yet know if in my lung but feeling tgat with t he way things arw going the pet wilp show thwy are there too. I really appreciate experiece you habe had.

I cant beleive how much i post here. Im so overwhelmed and you are being a rock right now for me This is so freaking hard. I cant stop saying sorry to my family because they are doing everything helping look after my baby. I hope to get some positive answers and that you are all ok right now



Did you read my post here
viewtopic.php?f=1&t=59936#p476262

The BCCA centers may have other options for you .... just sayin'

Best wishes
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

Trying
Posts: 250
Joined: Sun May 13, 2018 10:11 pm

Re: Will they operate in more than one spot affected. Im so sad

Postby Trying » Thu May 31, 2018 12:00 am

I have had my dr refer me to the larger cancer center here. I am just awaiting a call back. Hopefully soon
38 yr old single mom of almost 2 year old at the time
April 2018 colon cancer stage IV 10 liver mets and peri met. Folfox and 12 rounds oxyplatin
Fec 2018 Down to 2 mets in liver. 8 dissapeared
July 2019 switched to xeloda pills as I prefer to 3 day infusion. Also on avistan
Oct 2019 emergency colostomy due to perforated bowel. ( unreal pain)
Feb 2020 show 2mm tumor increase.
Plan to go back on oxy
Oxy failed- irinotecan as of of Sept 2020

User avatar
CRguy
Posts: 10474
Joined: Sun Feb 10, 2008 6:00 pm

Re: Will they operate in more than one spot affected. Im so sad

Postby CRguy » Thu May 31, 2018 12:23 am

Excellent news !!!
BCCA may have options for POG and immunotherapies which local docs might not.
...AND if they can't do all the surgery, all at once everywhere .....
they could get you being qualified for surgeries as part of the long term plan

... AND YOU ARE IN THIS FOR THE LONG TERM !!!!!!!

Love Peace and Harmony
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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