Surgeon has me feeling horrible

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Trying
Posts: 242
Joined: Sun May 13, 2018 10:11 pm

Surgeon has me feeling horrible

Postby Trying » Fri May 25, 2018 4:53 pm

Just got back from surgeon. Im stage 4. Because of placement of my 10 mets surgery not possible
He says if pet scan shows cancer os anywhere besides the liver they will not even try alternatives to get rid of cancer and will eventually tak my life. Is this what you have heard?? Im 38 with baby and so upset. He also said that if i am very lucly chemo may shrink these tumors but usually doesnt shrink them. Is this true? I thought thats what chemo was for. I dont start chemo fpr week or so as awaiting further test results. Im so confused and upse
Last edited by Trying on Fri May 25, 2018 6:24 pm, edited 1 time in total.
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

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Robino1
Posts: 463
Joined: Fri Aug 11, 2017 12:09 pm
Facebook Username: Robin.lawthers
Location: Florida

Re: Surgeon has me feeling horrible

Postby Robino1 » Fri May 25, 2018 6:01 pm

I don't know why he would say that chemo won't shrink tumors. It shrunk mine. Granted I got a couple more spring up but that was kind of predicted because of my particular mutation. I'm looking into HIPEC to hopefully get me into a better place

Is the surgeon a specialist in colon cancer? You need to get a second opinion at a cancer hospital.
At 54 2014 1st colonoscopy colon cancer detect
Colon resect margins clear. No chemo Stage II
2017
Distend abd, pain in intestines.
CT scan seeding & Ascites
Lap diag - cancer on the omentum
CEA 217; 219
FOLFOX started 6/17
CEA 202
8/29/17 CT melting of tumor.
Latest CT scan shows 2 new tumors and return of ascites.
CEA: (2017)9/30 -109; 10/12 -99.1; 11/4 -90.7; 11/30 -70.7; 12/14 -83.4; (2018)1/4 -73.3; 2/1-84.2; 89.2; 89.8; 88.5; 81.8: 93.5; 107; 119
BRAF V600e

Trying
Posts: 242
Joined: Sun May 13, 2018 10:11 pm

Re: Surgeon has me feeling horrible

Postby Trying » Fri May 25, 2018 6:22 pm

Thank you. I am thinking a second opi ion as well. He is a liver surgeon as i have mets
Of the liver
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

Lee
Posts: 6104
Joined: Sun Apr 16, 2006 4:09 pm

Re: Surgeon has me feeling horrible

Postby Lee » Fri May 25, 2018 7:27 pm

He is a liver surgeon. End of story

Please get a 2nd opinion at a Major Cancer Treatment Center or a major cancer hospital. You need a TEAM of doctors that INCLUDE a liver surgeon, Onc, etc to get better picture of what is going on inside of you. Each Dr with there specality

He is a liver surgeon, not an Onc. There are many chemo options out there with many new drugs coming through the pipeline that I'm sure he is not aware of why . . . because he is a liver surgeon, NOT an Onc

Please don't let him get you down. Where are you located?

Don't throw in the town yet and don't let his comment get to you. You are at the beginning of this journey. You need an aggressive team who will attack your cancer from MANY different angles, not just from the liver point of view.

major cancer treatment centers or hospital. 2nd opinion

Feel free to vent here anytime you want. Believe me, we do get it here.

Good luck,

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!

zephyr
Posts: 293
Joined: Thu Aug 18, 2016 7:31 am

Re: Surgeon has me feeling horrible

Postby zephyr » Fri May 25, 2018 7:31 pm

Ditto what Lee just wrote.
Nov-2009 Early stage CRC found during routine colonoscopy
2010, 2011, 2014 Follow up colonoscopies, all clear
Jun-2016 CRC found during routine follow up colonoscopy, surgery, Stage 4, KRAS, MSS, inoperable lung mets
Aug-2016-May-2018 Folfox, 5FU & Avastin, 5FU, Folfiri & Cyramza
Aug/Sep-2018 YAG laser surgeries (Germany) on both lungs, 11 nodules (9 mets) removed
Nov-2018 clean CT scan
Mar-2019 New lung nodules
Apr/Jul-2019 Xeloda/Avastin, SBRT
June-2020 Mild progression, continue Xeloda/Avastin

Lee
Posts: 6104
Joined: Sun Apr 16, 2006 4:09 pm

Re: Surgeon has me feeling horrible

Postby Lee » Fri May 25, 2018 7:35 pm

Trying wrote: . . . He also said that if i am very lucly chemo may shrink these tumors but usually doesnt shrink them. Is this true?


That comment right there is a liver surgeon advising you as if he were an Onc. There is a saying around here, Surgeons should not offer chemo advice and Onc should not offer surgical advice.

There many chemo options and Immune therapy have helped a lot of people when traditional chemo is not as effected.

Don't let his words get you down,

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!

Trying
Posts: 242
Joined: Sun May 13, 2018 10:11 pm

Re: Surgeon has me feeling horrible

Postby Trying » Fri May 25, 2018 7:39 pm

Thank all of you so very much. I am in canada b.c.
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

Lee
Posts: 6104
Joined: Sun Apr 16, 2006 4:09 pm

Re: Surgeon has me feeling horrible

Postby Lee » Fri May 25, 2018 7:43 pm

I'm in the USA, hopefully our Canadian members will chime in soon.

What type of doctor found your tumor? GI, surgeon, etc. Can that person recommend a cancer hospital. Do you have a primary Dr. Can that person recommend a place.

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!

Trying
Posts: 242
Joined: Sun May 13, 2018 10:11 pm

Re: Surgeon has me feeling horrible

Postby Trying » Fri May 25, 2018 8:09 pm

Hi. It was actually found when i went to the emergency room. I have seen an onc.who only works with a team of 3. Hes the one who sent me to the liver surgeon. Finding each appointment is making things seem worse. I am going to be asked to be sent to a larger cancer center in surrey bc. Thank you so much for showing you care. It means alot
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

Lee
Posts: 6104
Joined: Sun Apr 16, 2006 4:09 pm

Re: Surgeon has me feeling horrible

Postby Lee » Fri May 25, 2018 8:17 pm

Know that you are not alone here. This is a wonderful forum, wish it had been here when I was going through this, I/we do understand your fears. There is a lot of knowledgeable people on this forum.

And as I wrote earlier, feel free to vent anytime. Some days are better than others. And unless someone has walked in your shoes, sometimes, family and friends just don't get it.

Keep us posted,

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!

jep
Posts: 256
Joined: Sun Jun 11, 2017 7:45 pm
Location: New England, USA

Re: Surgeon has me feeling horrible

Postby jep » Fri May 25, 2018 8:29 pm

My husband and I too had a very dark moment with a doc (Onc) who basically made us feel like the end was near....thank god we got a second opinion and my husband is doing good now....that first doc had a negative vibe (I know it sounds crazy), but as soon as she left the room we looked at each other and just knew that we had to move on....trust your instincts and I totally agree with the sound advice of the many members who chimed in before me...
Prayers and love to you all...
Jep
Stage IV CC 5/16/17
Loc: recto-sig
Type: Adenocarcinoma
Size: 7.4 cm
Grade: G3
TNM: T3N2M1
LNs: 8/20
BL CEA: .9
LVI: present
Perineural invasion: present
LAR margins: clear (w/in microns)
Folfox (8/17-1/18)
Scope 6/18 - CLEAR! - 2 polyps
PET 10/17/18: 3 pos LNs
Irino + Vecti (11/18)
CEA: 1.7 (2/19)
Xel + rad (5/19)
Surgery: 8/21/19 (aborted)
P1 Trial 10/19 - 12/19
Bypass 12/6/19
Folfox + vecti 1/2/19 - 4/3/20
Kid Fail 5/1/20
Folfiri + Avastin 5/20 - 6/20
bypass 6/29/20
Stivarga 7/18/20 -
Home 9/10/20

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mobrouser
Posts: 156
Joined: Wed Apr 11, 2018 1:44 pm
Location: Ontario

Re: Surgeon has me feeling horrible

Postby mobrouser » Fri May 25, 2018 8:49 pm

Trying wrote:Hi. It was actually found when i went to the emergency room. I have seen an onc.who only works with a team of 3. Hes the one who sent me to the liver surgeon. Finding each appointment is making things seem worse. I am going to be asked to be sent to a larger cancer center in surrey bc. Thank you so much for showing you care. It means alot


I had the same feelings in the beginning as well. From being admitted to hospital, to diagnosis, to surgery, to discussing tumour pathology, to hearing survival rates, every time I met with a Dr. the news got worse. I think the feelings that you are experiencing are normal, regardless of whether your surgeon's statements are correct or not. Talk to your family doctor as he/she should have all reports and can direct you to who they feel is best suited for your case. Things will get better once you have a definite course of action planned. I'm in Ontario, so I can't offer much help in regards to B.C. healthcare.

8) mob
CC Dx Oct 2017 @ age 58
Laparoscopic right hemi-colectomy Dec 2017
Adenocarcinoma ascending colon – 6cm x 6cm x 2cm, Low Grade, penetrates to peritoneum
T4a N2a M0, Stage IIIC
lymph nodes 6 positive out of 18
FOLFOX started Jan 16 2018; finished Aug 2 2018 (felt like a year)
CEA - 01/15/18 - 2.8; 07/29/18 - 5.3
CT scan Aug 8 2018 - Clear
PET scan Sept 6 2018 (thought about bringing the cat :wink: ) - Clear
Colonoscopy Dec 7 2018 - Clear - Next in 3 years?

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CRguy
Posts: 10231
Joined: Sun Feb 10, 2008 6:00 pm

Re: Surgeon has me feeling horrible

Postby CRguy » Sat May 26, 2018 1:18 am

Trying wrote: I am going to be asked to be sent to a larger cancer center in surrey bc. Thank you so much for showing you care. It means alot


The BC Cancer Agency in Surrey is linked here :
http://www.bccancer.bc.ca/our-services/ ... 0%93surrey

I agree you will be better served by getting into the major cancer centre than a regional centre or clinic at this point.
I was treated at BCCA Vancouver and my father had treatment through BCCA Kelowna. They are all linked and the specialists there have more direct access to newer treatments and diagnostics.

Keep posting and PM me anytime if you need more info.

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

stu
Posts: 1382
Joined: Sat Aug 17, 2013 5:46 pm

Re: Surgeon has me feeling horrible

Postby stu » Sat May 26, 2018 4:17 am

Hi ,
I remember those meetings well where you are left thoroughly dismantled and trying to find some firm ground .
Now you step forward to see what chemo can achieve and there lies the hope . Chemo not only shrank my mum’s liver mets it removed them altogether from the scan . One alone was athe size of a small orange by itself at the start of this process . My husband is a doctor , he was aghast when he saw my mum’s intital scan and ecstatic when he saw what six cycles of chemo had achieved . That was her starting point . Take the advise and get the most current people involved . My mum also filtered out negative influences as she wanted to say mentally well as she processed chemo . For that reason alone she watched the company she kept .
Take the time you need to recover from the meeting or use it to connect with your fight if need be .
We are here to encourage you forward.
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 .

jdepp
Posts: 488
Joined: Sun Sep 28, 2008 7:53 pm

Re: Surgeon has me feeling horrible

Postby jdepp » Sat May 26, 2018 7:43 am

I was dx in 2008 with 12+ liver tumors across my liver -- totally inoperable. Chemo shrunk things down & I had liver surgery in 2009. There's no sense in assuming chemo won't work. Good luck & hang in there.
Colon dx 08 @ 41 Poorly diff. 12+ liver mets, 19/28 LN
Colon rsx /14 x Folfox-Erbitux 08-09
PVE / Liver rsx 09
Lung & LN mets 10
Folfiri, Xeloda, Avastin 10-13
Xelox, Erbitux, UFUR, TS-1, Oxi, Lonsurf 14-16
Stivarga & TIL trial 16
Brain lesion, RO688 trial 18


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