Advise.. I need to be more aggressive

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Trying
Posts: 240
Joined: Sun May 13, 2018 10:11 pm

Advise.. I need to be more aggressive

Postby Trying » Sun Feb 09, 2020 10:57 pm

Hi everyone..here's a long post

Thank you all for the answers to all my posts. I keep getting some comments that are nudging me to step it up.( which I appreciate) One is "why isn't your dr being more aggressive?" That's what I'd like to know. I'm kn canada and I'm not sure if it's different for you guys but the dr. Needs to send us to a surgeon. We can't see them without a dr referral. im on my second oncologist as this current one is at a Cancer hospital where he is head dr.. I've gone to a surgeon twice at the beginning of my journey. I'm not clear headed enough to know what to do next. As my mom pointed out what if I get a new oncologist completely negative about my diagnosis and make my anxiety worse. As you can all tell by my posts I have horrendous anxiety. My mom has said he can't be more aggressive as a small met is on an in,/ out valve in liver. I also have a pesky peri Met so a lot of surgeons here are hesitant to operate if you have Mets more than one spot. So my question is how do I handle this? What would you do? Do i trust my dr...A top oncologist at the bc cancer hospital? Or move on? Beg to see a surgeon?
Please positivity only :D

Nicole
Last edited by Trying on Mon Feb 10, 2020 1:51 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

Rock_Robster
Posts: 507
Joined: Thu Oct 25, 2018 5:27 am
Location: Melbourne, Australia

Re: Advise.. I need to be more aggressive

Postby Rock_Robster » Sun Feb 09, 2020 11:06 pm

Hi Nicole, good on you for staying with this and stepping up! It’s not easy.

We could debate the medical aspects of your care, but I’m not sure that’s what’s most helpful right now. Instead, might I make two suggestions:

1. Anxiety is a completely reasonable complicating factor, that needs to be addressed independently. I don’t know where you’re at but if you haven’t considered seeing a psychologist I would highly recommend it. This will help you get in the best shape mentally for what is to come.

2. Given you have tried a few there now, it might be time for a consult with one of the more famously aggressive centres. The two that would come to mind would be MSK and City of Hope. The peri met may be a complicating factor and hence you might want to focus on getting this clear first. In this case, a high volume CRS/HIPEC centre could be the way to go (eg Dr Sugarbaker in DC or Dr Sardi in Baltimore).

It’s annoying to have to get referrals and travel, but this might be the game changer - who knows. And it’s much easier and better to do it earlier than later.

Best of luck,
Rob
38M Australia
10/2018 Dx 3.5cm RC adenocarcinoma, 12cm high
Mod diff, EMVI+ LVI+. 4 liver mets
pT3N1aM1a Stage IVa. MSS NRAS G13R
CEA: Oct-18= 12; Nov-18= 14, Mar-19= 2.4, Aug-19 <2.0, Mar-20=2.2, May-20=1.9, Jun-20=2.1
11/18 FOLFOX x6
3/19 Liver resect
5/19 25x pelvic VMAT radiation; complete met. response
07/19 Robot ULAR w ileo, 1/27 LN+
08/19 Found liver spot
08/19 FOLFOX x1, FOLFOXIRI x1, FOLFIRI x5
12/19 Liver resect #2
02/20 Ileo reversed
03/20 NED (PET+MRI)
06/20 NED (CT+MRI)
07/20 Clear scope

Trying
Posts: 240
Joined: Sun May 13, 2018 10:11 pm

Re: Advise.. I need to be more aggressive

Postby Trying » Sun Feb 09, 2020 11:25 pm

HI Thanks for the reply. I am on anxiety meds and do see someone for it as I really need to. Would I just contact the hospital in the U.S. and ask to send over my med file? Sorry if that sounds obvious but don't know if things are done different there? What type of cost would it be to send files? I'm not used to paying for medical so im clueless
Nicole
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

Rock_Robster
Posts: 507
Joined: Thu Oct 25, 2018 5:27 am
Location: Melbourne, Australia

Re: Advise.. I need to be more aggressive

Postby Rock_Robster » Mon Feb 10, 2020 12:31 am

Trying wrote:HI Thanks for the reply. I am on anxiety meds and do see someone for it as I really need to. Would I just contact the hospital in the U.S. and ask to send over my med file? Sorry if that sounds obvious but don't know if things are done different there? What type of cost would it be to send files? I'm not used to paying for medical so im clueless
Nicole

Hi Nicole, no problem at all - these are the right questions to ask! I’m not in the US myself so others might have more detailed info, but most of the major hospitals have an International Centre that you can contact and they’ll explain the process. They can also give you an idea of costs, and what you’ll need to provide in terms of files, referrals etc. MSK certainly has a department for this (they see a lot of international patients); I would assume City of Hope has one too. MSK also has a Remote Second Opinion service, but it doesn’t include surgical and given what you’re looking for and your location, I think attending in person may be preferable. I’ve heard others say they don’t like to rely on outside scans so they may want to do their own. In any case, they’ll tell you - they do this all the time.

Good luck!
38M Australia
10/2018 Dx 3.5cm RC adenocarcinoma, 12cm high
Mod diff, EMVI+ LVI+. 4 liver mets
pT3N1aM1a Stage IVa. MSS NRAS G13R
CEA: Oct-18= 12; Nov-18= 14, Mar-19= 2.4, Aug-19 <2.0, Mar-20=2.2, May-20=1.9, Jun-20=2.1
11/18 FOLFOX x6
3/19 Liver resect
5/19 25x pelvic VMAT radiation; complete met. response
07/19 Robot ULAR w ileo, 1/27 LN+
08/19 Found liver spot
08/19 FOLFOX x1, FOLFOXIRI x1, FOLFIRI x5
12/19 Liver resect #2
02/20 Ileo reversed
03/20 NED (PET+MRI)
06/20 NED (CT+MRI)
07/20 Clear scope

Rock_Robster
Posts: 507
Joined: Thu Oct 25, 2018 5:27 am
Location: Melbourne, Australia

Re: Advise.. I need to be more aggressive

Postby Rock_Robster » Mon Feb 10, 2020 12:34 am

PS:

https://www.mskcc.org/experience/become ... l-patients

https://www.cityofhope.org/patients/dep ... l-medicine

These are just two examples - of course there may be others that are better suited, I’m not sure.
38M Australia
10/2018 Dx 3.5cm RC adenocarcinoma, 12cm high
Mod diff, EMVI+ LVI+. 4 liver mets
pT3N1aM1a Stage IVa. MSS NRAS G13R
CEA: Oct-18= 12; Nov-18= 14, Mar-19= 2.4, Aug-19 <2.0, Mar-20=2.2, May-20=1.9, Jun-20=2.1
11/18 FOLFOX x6
3/19 Liver resect
5/19 25x pelvic VMAT radiation; complete met. response
07/19 Robot ULAR w ileo, 1/27 LN+
08/19 Found liver spot
08/19 FOLFOX x1, FOLFOXIRI x1, FOLFIRI x5
12/19 Liver resect #2
02/20 Ileo reversed
03/20 NED (PET+MRI)
06/20 NED (CT+MRI)
07/20 Clear scope

Trying
Posts: 240
Joined: Sun May 13, 2018 10:11 pm

Re: Advise.. I need to be more aggressive

Postby Trying » Mon Feb 10, 2020 12:37 am

Thanks Rob!
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

Punky44
Posts: 440
Joined: Mon Oct 01, 2018 4:29 pm

Re: Advise.. I need to be more aggressive

Postby Punky44 » Mon Feb 10, 2020 1:45 am

Make that call Nicole! When we are at Mayo, we always hear how lucky we are to be in driving distance because so many people we run into have flown from all over the world.
Caregiver to my amazing mom (68 at dx)
10/1/18 DX with rectal cancer; CEA 17
T3N2M0
Total neoadjuvant therapy:
8 rounds Folfox 11/5/18 - 2/11/19
Short course radiation 3/14/19 - 3/20/19
Robotically assisted laparoscopic LAR 3/21/19
Pathology report says yT2N0M0 with 0/38 nodes
6/28/19 Reversal and port out
CEA 2.1; 1.9; 2.6; 2.8; 2.3
Latest update: 6/20–Clear CT, normal CEA

Me: 34, first colonoscopy 11/16/18—normal! Come back in 5 years.

Trying
Posts: 240
Joined: Sun May 13, 2018 10:11 pm

Re: Advise.. I need to be more aggressive

Postby Trying » Mon Feb 10, 2020 12:54 pm

That is good to hear. Thank you
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

brokenwings
Posts: 114
Joined: Mon Jan 07, 2019 1:50 am

Re: Advise.. I need to be more aggressive

Postby brokenwings » Mon Feb 10, 2020 4:51 pm

Trying wrote:That is good to hear. Thank you


Hi Nicole.

It's been so long.

You should definitely look for an "aggressive" surgeon, I've read stories of people with waaaay more disease than you that got surgery. I'm one of them!

What caused your bowel perforation?

Hugs.
DX 2019 Adenocarcinoma Sigmoid colon. PC + ovarian met.
Obstruction. Temporary colostomy.
Folfirinox + Avastin: 6 cycles. Scans: partial response.
Surgery (CRS + HIPEC) 04/29: too much disease, surgery cancelled. Right ovary removed.
2nd ptotocol: IP chemo (oxaliplatin) + IV chemo (Folfiri + Avastin). 8 cycles
10/31/2019: 11 hour-long Hipec + 6 weeks in hospital
12/30/2019: liver met
02/05/2020: reversal surgery. New peri mets discovered
March 2020: 5fu+Avastin
May 2020: fistula

Trying
Posts: 240
Joined: Sun May 13, 2018 10:11 pm

Re: Advise.. I need to be more aggressive

Postby Trying » Mon Feb 10, 2020 7:48 pm

Thank you. The perforation was from a tumor that they took out.
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

Trying
Posts: 240
Joined: Sun May 13, 2018 10:11 pm

Re: Advise.. I need to be more aggressive

Postby Trying » Mon Feb 10, 2020 7:51 pm

Thank you. The perforation was from a tumor that they took out.
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

Detox
Posts: 56
Joined: Fri Apr 28, 2017 5:27 pm

Re: Advise.. I need to be more aggressive

Postby Detox » Tue Feb 11, 2020 12:59 am

Definitely try to find another doctor. I've seen posters here with doctors who have gone the approach of liver resection + lymph nodes, then recovery, then peritoneal HIPEC. I don't think they can do it simultaneously unfortunately but it can be a step by step process. I hope someone who has gone through it can chime in.

brokenwings
Posts: 114
Joined: Mon Jan 07, 2019 1:50 am

Re: Advise.. I need to be more aggressive

Postby brokenwings » Tue Feb 11, 2020 2:12 am

Detox wrote:Definitely try to find another doctor. I've seen posters here with doctors who have gone the approach of liver resection + lymph nodes, then recovery, then peritoneal HIPEC. I don't think they can do it simultaneously unfortunately but it can be a step by step process. I hope someone who has gone through it can chime in.


They can do liver, lymph nodes and peri mets all in one surgery. It all depends on the extent of the disease. It wasn't my situation but there are many stories like that on Colontown.
DX 2019 Adenocarcinoma Sigmoid colon. PC + ovarian met.
Obstruction. Temporary colostomy.
Folfirinox + Avastin: 6 cycles. Scans: partial response.
Surgery (CRS + HIPEC) 04/29: too much disease, surgery cancelled. Right ovary removed.
2nd ptotocol: IP chemo (oxaliplatin) + IV chemo (Folfiri + Avastin). 8 cycles
10/31/2019: 11 hour-long Hipec + 6 weeks in hospital
12/30/2019: liver met
02/05/2020: reversal surgery. New peri mets discovered
March 2020: 5fu+Avastin
May 2020: fistula

michelle c
Posts: 1898
Joined: Wed Dec 02, 2009 3:58 am

Re: Advise.. I need to be more aggressive

Postby michelle c » Tue Feb 11, 2020 9:53 am

Hi Nicole,

I think that you should definitely seek out another opinion. It must seem overwhelming but I’m sure there are others here who could help you and give you direction about the best way to move forward with it. I am not in the US so I’m not really any help, unfortunately. Might be best to put up another post with the subject heading: Help needed with obtaining a second opinion or something similar. That way, more people will see it and be able to chime in with help for you. Best wishes
25 May 09 Dx with CC (sigmoid colon) 2 days after my 44th b'day
CEA prior to surgery 4.7
3 Jun 09 LAR - Stage III 3/10 lymph nodes
6 Jul - 10 Dec 09 12 cycles FOLFIRI
Genetic testing - inconclusive for Lynch
Jul 12 port removed & hernia repair

boxhill
Posts: 555
Joined: Fri Apr 06, 2018 11:40 am

Re: Advise.. I need to be more aggressive

Postby boxhill » Tue Feb 11, 2020 2:47 pm

Trying, I don't understand your description of the perforation as being caused by "a tumor they took out."

It sounds like you are saying that when you were diagnosed they did NOT perform any type of colectomy to remove the primary tumor and sample lymph nodes, instead doing chemo first, but eventually did remove your primary when it grew sufficiently to perforate the bowel. Is that correct? If so, where was this tumor, and what type of procedure did you have? A hemicolectomy, right or left, for example? How many lymph nodes were removed for sampling, and what was the pathology on them? Any nodes malignant?

Was the peri met diagnosed before or after the perforation? What are your basic tumor genetics? (KRAS,BRAF, MSS/MSI)

I think that if you are interested in seeking treatment at a US cancer center you need to contact them and talk about how it would be paid for before anything else.
F, 64 at DX CRC Stage IV
3/17/18 blockage, r hemi
11 of 25 nodes,5 mesentery nodes
5mm liver met out
pT3 pN2b pM1
BRAF wild, KRAS G12D
dMMR, MSI-H
5/18 FOLFOX
7/18 CT NED
11/18 CT NED
12/18 MRI 5mm liver mass, 2 lymph nodes in porta hepatis
12/31/18 Keytruda
6/19 Multiphasic CT LNs normal, Liver stable
6/28/19 Pause Key, predisone for joint pain
7/31/19 Restart Key
9/19 CT stable
Pain: all fails but Celebrex
12/23/19 CT stable
5/19 MRI stable/NED
Suspend treatment


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