Not sure if this is a stupid question, but ...

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

Not sure if this is a stupid question, but ...

Postby dauofcamom » Mon May 28, 2018 5:35 pm

There are two very good hospitals where my mom lives in a large SoCal area. One is affiliated with MD Anderson. My stupid question is, is there really that big of a difference?? Both are highly rated but one is, well, MDA. My mom’s network is with the other hospital although as a Medicare patient with excellent secondary insurance coverage, I think she can go just about anywhere.

Is there any reason she should switch? She’s IIIC and in the middle of her first round of chemo. Her Onc is great and has terrific reviews. There’s nothing about her treatment or the way she’s been treated that is unsatisfactory. But naturally I want the best of everything for my mom. Not sure that’s a good reason to change course though. Thoughts?
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

Lee
Posts: 6200
Joined: Sun Apr 16, 2006 4:09 pm

Re: Not sure if this is a stupid question, but ...

Postby Lee » Mon May 28, 2018 6:08 pm

If your mom is happy and feels good about her Dr.(s), stay with them. I too was diagnosed with stage IIIC. I did get a 2nd opinion with the Mayo Clinic, butt chose Onc, surgeon, and radiation, closer to home. I truly believe my Onc went out of her way to make sure I beat this cancer. Sometimes you get a better fit with local doctors.

The advantage of major cancer treatment centers is they tend to be a bit more up to date on the latest treatment. My local onc did her residency at Sloan Kettering and was very much up to date.

Bottom line, you have to put your confidence with your doctor(s), if you can't, time to find a new doctor.

NOT a stupid question at all,

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!

Aqx99
Posts: 403
Joined: Fri Mar 31, 2017 7:28 am
Facebook Username: aqx99
Location: Pfafftown, NC

Re: Not sure if this is a stupid question, but ...

Postby Aqx99 » Mon May 28, 2018 8:13 pm

The most important thing is that your mom likes her medical team and trusts them. There is a standard of care that all cancer cases start with, no matter what hospital the patient goes to. It is only if the case is discovered to be different than the norm that doctors look to other regimens. We have two cancer centers here in my city. One is NCI rated, the other not. I go to the one that is not NCI rated and I feel I get top notch care. I absolutely love every person I have come into contact with over the last years or so for treatment. I have an amazing nurse navigator that goes above and beyond every single day.
Anne, 40
Stage IIIB Rectal Cancer
T3N1bM0
2/21/17 Dx, Age 39
2/21/17 CEA 0.9
3/23/17 - 5/2/17 Chemoradiation, 28 treatments
6/14/17 Robotic LAR w/temp loop ileostomy, ovaries & fallopian tubes removed, 2/21 lymph nodes positive
7/24/17 - 12/18/17 CapeOx, 6 Cycles
7/24/17 Dx w/ovarian cancer
9/6/17 CA 125 11.1
11/27/17 CEA 2.6
12/5/17 CT NED
12/13/17 CEA 2.9
1/11/18 CA 125 8.6
1/23/18 Reversal
3/21/18 CT enlarged thymus
4/6/18 PET NED
7/10/18 CT NED
7/11/18 CEA 2.6
9/18 Bilateral Prophylactic Mastectomy

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

Re: Not sure if this is a stupid question, but ...

Postby dauofcamom » Mon May 28, 2018 8:42 pm

Thank you both for your input. I keep reading things like “make sure you get to the best cancer hospital” and it makes me second guess whether my mom is in the best hands. I have been here with her for the past two months but leave to go home to the opposite coast later this week. I worry about not being here to help her navigate this path.

My mom is very naive (I don’t mean that in any way as an insult but she’s always been sheltered, first by her mom and then my dad when they married). She doesnt understand what all staging and treatment involve, and she doesn’t want to read anything. At first I couldn’t understand why and felt angry that she wasn’t taking a more active roll but now I have learned that everyone handles things differently. She just wants to be told what to do without knowing the “why” details. My dad is 80 and doesn’t know the first thing about a computer or how to research or where to dig in and question conflicting info. My brother is awesome. He’s the warm, caring, listener in the family. But like my mom, he’s not a take charge type of person and tends to go with the flow of things.

I have access to all of my moms medical records and will be in regular contact with her cancer team and will be included via conference call/speaker phone during her onc appointments. I am feeling guilty for leaving but have my family and career at home to take care of, too. This has been so incredibly difficult emotionally. I have so enjoyed the past two months I have spent with my mom. Every morning I wake up and say a prayer of gratitude that I get to spend this day with my mom. However, today has been a little teary because I am leaving in a couple days.

This cancer sh*t sucks. I’ve been so moved by Julie Yip’s blog and all the stories here. My heart is with everyone. I deeply appreciate the kindness of everyone who has replied to my posts.
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

hawkowl
Posts: 130
Joined: Sun Dec 14, 2014 5:29 am
Location: MN/FL

Re: Not sure if this is a stupid question, but ...

Postby hawkowl » Mon May 28, 2018 11:43 pm

Not every excellent physician wants to work at a major teaching hospital...no need to switch if you are comfortable with the care team. You can always get a second opinion for peace of mind.
Dx 12/2014 T3N2MX (distant LPLN) low rectal
12/2014-4/2015: FOLFOX (8 cycles)
4/2015-6/2015: 28 cycles of chemoradiation with xeloda, SBRT
8/2015: Robotic APR with iliac node dissection; path showed ypT0,ypN0 (complete pathological response).
11/2015 scans clear, CEA 2.1
11/2015 parastomal hernia repair
3/2016 CEA 1.7, scans stable...
6/2020 5 years of normal CEA and stable scans
Now dealing with pyoderma gangrenosum.
Totally disabled due to oxaliplatin induced neuropathy and dysautonomia

NHMike
Posts: 2508
Joined: Fri Jul 21, 2017 3:43 am

Re: Not sure if this is a stupid question, but ...

Postby NHMike » Tue May 29, 2018 12:14 pm

I went to a local hospital for chemo and a local radiation center for radiation. My other options were Mass General Hospital and Dana Farber/Brigham and Women's in Boston. I got second opinions for oncology, radiology and surgery from Dana Farber/Brigham and Women's and the Oncologist and Radiologist had the same treatment recommendations. I had the surgery done in Boston at Brigham and Women's - there are no CRC specialists in my state.

The Neo-Adjuvant chemo and radiation were every weekday for 28 days and it would have been difficult for me in terms of logistics to do those in Boston. Doing them locally was so much more convenient. The same thing with Adjuvant chemo. So you could get second opinions from major cancer hospitals to be sure but there are things that are done well at any place you go to.
6/17: ER rectal bleeding; Colonoscopy
7/17: 3B rectal. T3N1bM0. 5.2 4.5 4.3 cm. Lymphs: 6 x 4 mm, 8 x 6, 5 x 5
7/17-9/17: Xeloda radiation
7/5: CEA 2.7; 8/16: 1.9; 11/30: 0.6; 12/20 1.4; 1/10 1.8; 1/31 2.2; 2/28 2.6; 4/10 2.8; 5/1 2.8; 5/29 3.2; 7/13 4.5; 8/9 2.8, 2/12 1.2
MSS, KRAS G12D
10/17: 2.7 2.2 1.6 cm (-90%). Lymphs: 3 x 3 mm (-62.5%), 4 x 3 (-75%), 5 x 3 (-40%). 5.1 CM from AV
10/17: LAR, Temp Ileostomy, Path Complete Response
CapeOx (8) 12/17-6/18
7/18: Reversal, Port Removal
2/19: Clean CT

weisssoccermom
Posts: 5974
Joined: Thu May 10, 2007 2:32 pm
Location: Pacific NW

Re: Not sure if this is a stupid question, but ...

Postby weisssoccermom » Tue May 29, 2018 6:23 pm

I did my chemo and radiation locally. Oh, I went up to Seattle....to Fred Hutch ( part of Seattle Cancer Care Alliance rated as one of the top 5) and honestly, I didn't like it. While I was a stage IIA, they wanted to treat me as though I was some complicated case. They told me that they had better radiation machines and, of course, their chemo was somehow 'better' than the exact same thing I could get closer to home. I opted NOT to go there for treatment.....honestly, it would have been H**L to travel back and forth to Seattle first for radiation and then for chemo! I did all of that locally and it doesn't much matter where you are....the initial 'standard treatment' is just that....standardized for everyone. Now, I was NOT comfortable with the board certified colorectal surgeons nearby....I thought that they were JERKS! I did opt to have my surgery done in Seattle and don't regret that for a minute.

If your mom (and you) are comfortable with the team of doctors that she has now....stay with them. Just because the other docs might be affiliated with MDA....it doesn't equate that they are necessarily better. In my case, the docs at Fred Hutch all just seemed so disconnected.....I had a difficult time understanding some of them and I didn't like feeling like I was just another patient. Big centers aren't always the best fit. If you would be unhappy or not having the trust factor that you need to have.....it's not the right fit. In addition, your mom's onc is going to be her 'go to' doctor for quite some time and you have to be with someone that you like, trust and who is accessible.
Dx 6/22/2006 IIA rectal cancer
6 wks rad/Xeloda -finished 9/06
1st attempt transanal excision 11/06
11/17/06 XELOX 1 cycle
5 months Xeloda only Dec '06 - April '07
10+ blood clots, 1 DVT 1/07
transanal excision 4/20/07 path-NO CANCER CELLS!
NED now and forever!
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