HELP. Mother’s treatment wrong?

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Mlhiers
Posts: 1
Joined: Tue May 28, 2019 12:37 pm
Facebook Username: Melissa chambery

HELP. Mother’s treatment wrong?

Postby Mlhiers » Wed Jun 12, 2019 11:23 am

68 yr Mom goes to emergency room 2 weeks ago. CT scan and colonoscopy reveal sigmoid colon cancer. Based on my research I believe there are MANY red flags that the care she has received so far is woefully inadequate. Pls let me know if you agree. This list just includes most recent concerns. There were many others.

I have so many concerns but my mom won’t listen to me. Any advice is appreciated

- Resection occurred one week ago. Pathology results due tomorrow
- she’s being treated exclusively by general surgeon. She had informal mtg w oncologist when she was in the emergency room after the colonoscopy.
- the general surgeon will deliver pathology results. Shouldn’t an oncologist be involved?
- pre-op she asked general surgeon how many lymph nodes would be removed. He said he’d know when he got in. Does this make sense? I thought # of lymph nodes removed was largely determined by clinical staging
- post op she asked how many lymph nodes were removed. He said he just scooped a bunch out.
- she has not been advised to set an appointment with an oncologist. Would put an oncologist be best to determine if the resectioning worked?
- post op surgeon said he saw no cancer spread during surgery when looking with the naked eye. Is his visual inspection relevant? Would any cancer specialist reassure a patient because he couldn’t “SEE” more cancer?
- as far as I can tell, no real clinical staging was performed. While she did have a CT scan and MRI it was done during emergency room stay and I’m not convinced they were specific to clinical staging after the colonoscopy. It was during a period when she was receiving a battery of tests to determine source of pain. They stated MRI was to look at an abnormal shadow on her femer. Full body CT scan performed before colonoscopy showed no evidence of liver or lungs problems
-She was told she would receive a pet scan after resectioning to see if it has spread. Why wouldn’t they want to know this prior to resectioning?

Butt
Posts: 26
Joined: Mon Mar 11, 2019 10:48 pm

Re: HELP. Mother’s treatment wrong?

Postby Butt » Wed Jun 12, 2019 4:43 pm

The are waiting for pathology report. It will give them the better idea. After that the oncologist will be talking to. Extra scans. They are going by book and you know it.

natelaugh
Posts: 94
Joined: Wed Apr 03, 2019 11:40 pm

Re: HELP. Mother’s treatment wrong?

Postby natelaugh » Wed Jun 12, 2019 4:44 pm

- the general surgeon will deliver pathology results. Shouldn’t an oncologist be involved?
When the surgery is done and you are home, the surgeon refer you to an oncologist if needed.

- pre-op she asked general surgeon how many lymph nodes would be removed. He said he’d know when he got in. Does this make sense? I thought # of lymph nodes removed was largely determined by clinical staging
Staging is determine after surgery and pathology. The surgeon remove the colon and surround area. The pathologist go into the tissues to determine how lymph nodes removed and have cancer. https://www.cancer.org/cancer/colon-rectal-cancer/detection-diagnosis-staging/staged.html

- post op surgeon said he saw no cancer spread during surgery when looking with the naked eye. Is his visual inspection relevant? Would any cancer specialist reassure a patient because he couldn’t “SEE” more cancer?
Surgeons remove what they can see. They want to get in and out and not stay too long. A pathologist and staging will determine if there are any likelihood of cancer cells left. If there are positive lymph nodes with cancer, then an oncologist will provide a recommendation of drugs/chemo and how much/cycles base on patient and their health.

-She was told she would receive a pet scan after resectioning to see if it has spread. Why wouldn’t they want to know this prior to resectioning?
There might not be any detectable at the moment. After surgery, if the lymph node has cancer then it can spread to other location.

You can request to read the pathology report and surgery report. It can give you an insight information of the cancer size, how much of colon removed,..etc.

Nate.
Caregiver to 80M
DX:CC,RC,desc
11/2018 rightPain
1/19/19 scopy,path
1/23 CTscan
2/19 surgery
2/26-2/28 NGTube
2/28-3/14 TPN bc ileus
3/2 2nd surgeryCloseOpenWound
3/4-3/28 woundVac
size: 6cm Adenocarcinoma
grade Poorly
Stage IIIC T3N2aMx
PositiveLymph:5of28
BaselineCEA:68
LVI:Y
PNI:N
Surgical margins:clear
MSI:MMR (MLH1, MSH2, MSH6, PMS2) Intact nuclear expression
Lynch status:N
Laparascopic, partial colectomy
CEA:3/28/19 2.8
Chemo:4/16/19-9/17/19 5FU,12cycles,every 14days,leucoverin,zofran,Dexamethasone

KimT
Posts: 675
Joined: Sat Feb 20, 2010 8:53 pm

Re: HELP. Mother’s treatment wrong?

Postby KimT » Wed Jun 12, 2019 8:01 pm

I don’t see anything inappropriate about the care your mother has received thus far. Until the pathology report is back, it’s a waiting game. No plan can be made until pathology is done. She can’t do any kind of chemo if it’s needed until 6+ weeks after surgery. She may not see an oncologist for a couple weeks yet. Nothing can be done anyway until she heals up.

Staging will be determined based on the pathology report. You will find out the number of nodes on the report. Lymph nodes are small and we all have different numbers of them. No surgeon is going to count lymph nodes while a patient is open on the table. It’s the pathologists job to examine all the tissue samples and count the number of nodes.
2/10 dx colon cancer
right hemicolectomy 3/19/10
Stage 2a 0/43 nodes
Lynch syndrome
3/14/10 colon resection/ removal of metal clips
Nov 11 dx ovarian cancer

Unitool78
Posts: 3
Joined: Thu Jun 13, 2019 1:47 am

Re: HELP. Mother’s treatment wrong?

Postby Unitool78 » Thu Jun 13, 2019 2:16 am

Regarding the lymph node count - while scans may indicate some nodes as being suspicious, the surgeon is going to basically take every single one he can find in the area during surgery. During my bowel resection they took out 37. Can't stage the disease until the lymph nodes have been tested. That's the determining factor in whether it's reached stage 3 - local lymph node involvement.

Care your mother has received so far send very appropriate. First step in treatment very often going to be removing the primary tumor. Expect she'll be getting further scans and consulting with other specialists in the coming weeks.
Stage 3 diagnosis Oct '17
Signet ring
12" sigmoid resection Nov '17
5 positive nodes
8 rounds CAPOX
NED June '18
Liver mets + Peri node found Oct '18
7 rounds FOLFIRI + Avastin for 5
PVE followed by right hepatectomy April '19
Resumed FOLFIRI June 6

mpbser
Posts: 936
Joined: Wed Apr 19, 2017 11:52 am

Re: HELP. Mother’s treatment wrong?

Postby mpbser » Thu Jun 13, 2019 5:59 am

I LOVE all your questions. They tell me that you are paying close attention and caring about your mom. Here are my responses:

- she’s being treated exclusively by general surgeon. She had informal mtg w oncologist when she was in the emergency room after the colonoscopy.
As it was an emergency surgery, your mother (or you, or whoever else would be involved) had no time to "shop" around the country for specialized surgeons if you desired. So long as the surgeon has the competence to do the surgery, there is nothing wrong with a general surgeon doing the surgery. (This may be of interest: my husband had an extremely difficult liver surgery at Mass General by a general surgeon and he did a phenomenal job.)

- the general surgeon will deliver pathology results. Shouldn’t an oncologist be involved?
As someone else mentioned, it is normal for the surgeon to deliver the pathology results. If there is malignancy, the surgeon next refers you to an oncologist.

- pre-op she asked general surgeon how many lymph nodes would be removed. He said he’d know when he got in. Does this make sense? I thought # of lymph nodes removed was largely determined by clinical staging
That makes perfect sense. The nodes that are removed are those that are local to the segment of colon removed. The amount of colon to be removed depends on what the surgeon physically sees (intraoperative ultrasound [IOUS]), although I think my husband's first surgeon who did his first colon resection only went by what he felt by hand as the report is silent on IOUS and he said he had the entire colon in his hands.

- post op she asked how many lymph nodes were removed. He said he just scooped a bunch out.
The pathology report will note the # removed. The surgeon removed 54 in the first colon surgery. We did not expect him to waste time counting them as he placed the specimen in the preserving medium.

- she has not been advised to set an appointment with an oncologist. Would put an oncologist be best to determine if the resectioning worked?
The pathology report should note what the "margins" are. That is, the report will show whether the resection/resected specimen has a buffer of normal tissue around the cancer, assuming there is malignancy.

- post op surgeon said he saw no cancer spread during surgery when looking with the naked eye. Is his visual inspection relevant? Would any cancer specialist reassure a patient because he couldn’t “SEE” more cancer?
Yes, it is relevant but not conclusive. The surgeon was most likely saying that the tumor did not appear to have invaded past the lining of the intestine. This is a good thing!

- as far as I can tell, no real clinical staging was performed. While she did have a CT scan and MRI it was done during emergency room stay and I’m not convinced they were specific to clinical staging after the colonoscopy. It was during a period when she was receiving a battery of tests to determine source of pain. They stated MRI was to look at an abnormal shadow on her femer. Full body CT scan performed before colonoscopy showed no evidence of liver or lungs problems
They will do a staging on the tumor and then when the oncologist has reviewed all the scans/reports, including the upcoming PET, there will be the clinical staging.

-She was told she would receive a pet scan after resectioning to see if it has spread. Why wouldn’t they want to know this prior to resectioning?
In an ideal world, yes, they would want to know this. However, it is standard to do the PET scan after resection. My husband had a colon resection only to find out via a follow-up PET scan that he had a "second" colon tumor that the surgeon had missed (see above reference). To this day, we are baffled as to how he missed a 6 cm tumor when he allegedly had the entire colon in his hands, but it happened.
Last edited by mpbser on Thu Jun 13, 2019 7:31 am, edited 1 time in total.
Wife 4/17 Dx age 45
5/17 LAR
Adenocarcinoma
low grade
1st primary T3 N2b M1a
Stage IVA
8/17 Sub-total colectomy
2nd primary 5.5 cm T1 N0
9 of 96 nodes
CEA: < 2.9
MSS
Lynch no; KRAS wild
Immunohistochemsistry Normal
Fall 2017 FOLFOX shrank the 1 met in liver
1/18 Liver left hepatectomy seg 4
5/18 CT clear
12/18 MRI 1 liver met
3/7/19 Resection & HAI
4/1/19 Folfiri & FUDR
5/13/19 HAI pump catheter dislodge, nearly bled to death
6-7 '19 5FU 4 cycles
NED

radnyc
Posts: 414
Joined: Tue Apr 06, 2010 6:32 pm

Re: HELP. Mother’s treatment wrong?

Postby radnyc » Thu Jun 13, 2019 6:50 am

Looks to me like she’s getting standard care. I’d wait for the results of the pathology where her stage will be confirmed. I’m certain that an oncologist will be involved at some point. Please be patient and don’t listen to too much outside noise. And, listen to what she wants done.

Peace
DX Jan '10, at 47
Feb - colon resection - 2/17 nodes
April - liver mets - Stage 4
3 months Folfox chemotherapy
August '10 liver resection and HAI pump
7 months chemo FUDR HAI and Folfiri systemic
NED since August 2010
Last treatment April '11
HAI Pump removed Dec '15


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