Need a New Doctor

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tarheelmom
Posts: 168
Joined: Mon Mar 07, 2016 5:55 pm

Need a New Doctor

Postby tarheelmom » Wed Jan 11, 2017 11:31 pm

I was just told that my surgeon left the hospital to take a more senior position at a distant medical center. When I asked who would be responsible for my 5 year surveillance program, I was told that now that my surgeon is gone, I should just rely on my PCP for blood work, scans, and scopes. I never saw an oncologist because I didn't need chemo or radiation. However, I don't really think my PCP is the right person to follow me for the next 5 years. She isn't on top of all the latest CRC research and protocols. A surgeon isn't interested in picking me up as a patient because I am supposedly done with surgery. An oncologist doesn't want me because I'm not in active treatment although I do have LARS. Anyone ever been in a similar position or have a recommendation? It sort of pisses me off because one of my primary concerns before surgery was my follow-up particularly if I had issues. Now the hospital just seems to be done with me.

Thanks.
52 y at dx, mom to 4
DX: RC on 2/22/2016
Stage I, T2N0M0, 0/32 LN
23 mm x 7 mm moderately differentiated invasive adenocarcinoma
3 cm from anal verge
4/12/16: ULAR, TME, & temp ileostomy
6/14/16: ileo reversal

KElizabeth
Posts: 400
Joined: Sat Oct 31, 2015 12:41 pm
Facebook Username: KElizabeth
Location: Omaha

Re: Need a New Doctor

Postby KElizabeth » Wed Jan 11, 2017 11:45 pm

I don't see why an oncologist wouldn't see you. Oncologists follow many patients who are no longer in treatment, some lucky ones for many years. If you walk in the doors the doctor gets paid right? I'm convinced this is the best option. You need someone who knows how sneaky colon cancer is watching out for you.

Stay vigilant.
Female age 39- ,2 teens.
Colon Cancer - DX March 2013
Age 34 at DX - Stage III B
Resection surgery -May 2013
FOLFOX - June, 2013 to Sept, 2013
5FU plus leukavorin Sept, 2013 to Dec, 2013
METs liver and lungs discovered Sept, 2015
KRAS - MSS
FOLFIRI plus Avastin - Sept, 2015 - July 2017
Durvalumab and Cediranib Sept 2017 Dec 17
FOLFOX with desensitization protocol - current

ChiMama
Posts: 34
Joined: Wed Jul 20, 2016 8:41 pm
Location: PHX

Re: Need a New Doctor

Postby ChiMama » Thu Jan 12, 2017 1:42 am

How unfortunate your surgeon has left. I would ask their office for a referral to an oncologist. I was Stage 1 also (T2N0M0) and was automatically referred to an onc. My surgeon is totally uninvolved with my after-care at this point. I have some unexplained lung nodules that they want to keep an eye on, so that may have influenced the referral. But even so, I think an onc is a specialist in surveillance testing & follow up, so they should want to take you.

I have my 6 month CT tomorrow, blood work next week at onc. :)
4/21/16 First Colonoscopy @59
DX high grade dysplasia
Fibroid uterus, liver cysts, lung nodules
6/17/16 Open surgery: hysterectomy, X 12.5cm sigmoid, 29 LN
T2N0M0 Stage 1 Mod diff adeno 5.2cm x 4.1. Gyne benign, Lynch neg
CT 7/27/16 Ground Glass & spiculated lung nodules, thyroid nods, watching.
2017/18/19 Scopes: polyps. Scans stable
2019 Endo: hiatal hernia. 2 breast biopsies, benign
5/20 GGN 1.1cm. Biopsy: adenocarcinoma/primary lung cancer. Robotic VATS upper left lobe. 1A
Mama to a rescue Chihuahua

fumaros
Posts: 273
Joined: Sat Jul 02, 2016 10:26 pm
Location: Syracuse, NY
Contact:

Re: Need a New Doctor

Postby fumaros » Thu Jan 12, 2017 10:19 am

I am in a similar situation, where my surgeon left. I only need a colonoscopy once a year and I really trust and like my surgeon; so I told her I would see her at her new practice even though it is a long drive away. If the travel is affordable to keep seeing your surgeon, i would as she is well versed in my history and knows what my insides should look like.
Diagnosed 4/8/16, age 29
Colectomy 4/20/16
Stage III, T4bN1 Tumor 7x6.5x2. Muscinous Adenocarcinoma with SRC features
2/16 lymph nodes
Stage IV, Peri mets 5/2019
CEA 4/14/16 - 16.8
CEA 6/2/16 - 1.9
CEA 6/17/16 - 0.87, 7/16 - 1.33, 12/16 - 1.14, 4/17 - 0.6, 7/17 - 0.5, 10/17 - 0.9, 3/19 -5.8, 4/19 -10
FOLFOX began 6/24/16 - 11/25/16, FOLFIRI - 5/10/19
10 round FOLFOX, 2 round 5-FU & Leucovorin, 1 round FOLFIRI
MRI & CT 8/16 - NED, CT 12/16 - 10/17 - NED

prs
Posts: 201
Joined: Sat Dec 12, 2015 7:09 pm
Location: Central California

Re: Need a New Doctor

Postby prs » Thu Jan 12, 2017 12:13 pm

My quarterly follow up includes a physical rectal exam and a special pelvic MRI. I believe it's very important these exams and scans are performed by Drs who know what they are doing. If there is a recurrence it needs to be caught asap. I don't know how much experience oncologists have looking at patients' rectums, but I suspect not much.

In my case I was getting quarterly exams from both my colorectal surgeon and my radiation oncologist, boy was that a day to look forward to!! :oops: . However recently they agreed to take alternating quarters. :D

I think you definitely need to find a Dr who has experience in this area so when you have your follow up, you are comfortable with the results. Maybe even a GI could do this?
Peter, age 65 at dx
DX 4 cm x 4 cm very low rectal adenocarcinoma into the sphincters 01/15
Stage III T3 N1 M0 with two suspicious lymph nodes
26 sessions IMRT radiation with 1,000 mg Xeloda twice per day 03/15 to 04/15
Complete clincal response to the chemoradiation...the tumor shrank completely away 06/15 :D
No surgery...Habr-Gama watch and wait protocol instead
Xelox chemotherapy 07/15-12/15
MRI and rectal exam every three months starting 07/15
MRI and rectal exam every six months starting 07/17
NED

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juliej
Posts: 3114
Joined: Thu Aug 05, 2010 12:59 pm

Re: Need a New Doctor

Postby juliej » Fri Jan 13, 2017 7:29 pm

Since you have LARS, I think a good gastroenterologist should be able to take care of you. He/she can do a rectosigmoidoscopy/colonoscopy, order a scan, and monitor your CEA. Make sure they are board-certified. Affiliated with a cancer center is good too.
Stage IVb, liver/lung mets 8/4/2010
Xelox+Avastin 8/18/10 to 10/21/2011
LAR, liver resec, HAI pump 11/2011
Adjuvant Irinotecan + FUDR
Double lung surgery + ileo reversal 2/2012
Adjuvant FUDR + Xeloda
VATS rt. lung 12/2012 - benign granuloma!
VATS left lung 11/2013
NED 11/22/13 to 12/18/2019, CEA<1

weisssoccermom
Posts: 5988
Joined: Thu May 10, 2007 2:32 pm
Location: Pacific NW

Re: Need a New Doctor

Postby weisssoccermom » Sun Jan 15, 2017 10:51 pm

I agree with julie....a good gastro should be able to follow up with you AND, IMO, if you have a good relationship with your PCP, get him/her to order scans and bloodwork. From friends I have known, the gastro isn't necessarily the best to keep up with the bloodwork/scans, especially if the patient is a stage I (they often don't feel it is necessary).
My opinion.....too often specialists feel that they know everything and I know of too many gastros that feel that way BUT....they are the ones to go to for the scopes, rectal exams, etc. However, your PCP is just as capable of ordering scans, bloodwork, etc. as anyone else and USUALLY, a good primary care doc will refer his/her patient to an onc IMMEDIATELY if there is something awry in the scan/bloodwork.

Even though I had an onc who followed up with me, I still stayed with my surgeon for the follow up three month visits, scopes, etc. and my PCP ordered all my tests. When I got to the 4+ year mark, my onc was diagnosed with cancer, took a leave and eventually left the practice. Initially, I still saw the NP in the practice but it got really old so I just followed up with scans, bloodwork, etc. with my GP. Honestly, at about 3 years out, my GP was the one who ordered all the tests anyway since I had no desire to drive 30 minutes just to get some bloodwork at my onc's office.

I'm not saying to just avoid all followups...far from it. Get in to see your PCP and see what he/she recommends. It may be that a good gastro and your GP are a perfectly good combination. Honestly, without any chemo, the only thing your onc is going to do anyway is to order the tests, take your BP, listen to your heart, ask you how you are feeling and charge you a bunch of money (and a higher copay). If you are comfortable with getting your scopes done by the gastro and having your other work/checkups done by your PCP....go for it.
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!
Perform random acts of kindness

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BeansMama
Posts: 959
Joined: Thu Jan 28, 2016 1:38 am
Location: North Carolina

Re: Need a New Doctor

Postby BeansMama » Mon Jan 16, 2017 3:29 am

I agree with Julie and soccermom. A good GI is probably your best bet, also if you have a good relationship with your PCP and they feel comfortable monitoring you then maybe that is the way to go. If they don't feel comfortable I am sure they would be able to refer you to the proper doctor for it. A referral may make the other doctors more prone to accept you as a new patient.

Just my .02, I am still fairly new to all of this so you my want to totally disregard everything I said :D

Keeping you in my prayers, hoping you remain NED!
41 yrs old
Tumor found 9/2015
Surgery 1 - 11/2015 LAR and colostomy
Surgery 2 - 11/2015 wound vac
Surgery 3 - 12/2015 revise resection, move colostomy
Mets to liver - tumor inoperable - one add'l met destroyed
Stage IVa (T3 N2a M1a)
Primary tumor 9 cm x 7.5 cm x 2 cm
Beginning Folfox 1/2016 - Failed
Beginning Folfiri and vectibix 8/2016 — Failed
Beginning Folfirinox + Avastin 11/2016 - Failed
Beginning Keytruda 1/2017
CEA drop from 345 to 7.3 after starting immunotherapy
Lynch positive 3/2016


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