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retiredteacher
Posts: 4
Joined: Sat Oct 21, 2017 1:34 pm

New Member here on the forum

Postby retiredteacher » Fri Dec 08, 2017 12:51 pm

Hi. Just completed 5 wks neoadjuvant Xeloda/rad. After initially feeling very optimistic about my drs. and the local hospital am now having some reservations, but unsure if justified. First two weeks went smoothly. Last three weeks extreme diarrhea and dehydration. Rec'd 2 liters IV H2O nearly daily by the final week. 20 - 25 lbs water retention in blown-up feet, ankles, legs, thighs. BP dropped to 90/40 on a couple of occasions; chose to stop BP meds. Finally asked them to stop with the IV fluid and suggested that the Advil might be contributing to the edema (Dr Google.) I believe the patient has the responsibility to be informed and to be his or her own advocate, and thought I had done a pretty good job upfront but have to state that my naivete and ignorance far outweighs my knowledge. I am leaving out details, but overall, it seems the left hand doesn't know what the right hand is doing, but I don't possess the expertise nor the mental state to really evaluate but I was pretty scared over the Thanksgiving holiday - BP, water retention, diarrhea. Hospital's Nurse Navigator program was only a pre and post questionairre - that's it! Dr's appear to not be a truly interdisclipinary team; each one one works within their own box of expertise, and it was never evident that they ever communicated with each other (aside from the initial tumor board mtg.) Oncologist has a policy of email communication only, and only to medical assistants, with a 2 working day response time, but first email question contact took a week because the medical assistant was off duty. Could not get in to see oncologist at the four week mark as directed (I did not know appts were booked a month in advance for him, and could not get to see him until one day after the last radiation/Xeloda treatment.) Oncologist said the radiologist should have backed off treatments due to my dehydration etc. and gave me a prescription for diphenoxylate-atropine (lomotil) which was effective. Weight dropped from 145 to 119 in one week. Surgeon says I came in way to early to see her (at the two week post Rad mark) and that I needed to see her at the two week post radiation mark. (?) I made a huge mistake in not keeping my GP in the loop since day one - saw him yesterday re: what to do about the BP. He was not consulted on any of the cancer referrals - my mistake, I went with the GI doc's and our past family experience, but wow, things have changed in the last decade. We only have one GI surgeon locally and she has a very good reputation. BUT GP is concerned about the planned surgery (laparoscopic LAR) and is recommending that I get a second opinion from Stanford surgery. I have never been sick before; want to have a high confidence level in my team and want to have a positive outlook but at this point pretty confused. Diagnosis of IBS 4 yrs ago, w/o lower scope. Rectal cancer about 8 - 10 cm from anal verge. PET scan shows no obvious organ or lymph invasion. No initial diagnosis, aside from cancer, rectal. Sorry this is so dang long. Any advice would be helpful. I think I need to def. see what Stanford has to say. If this post needs to go on another topic or list, please advise. I need to communicate with someone.
63 yo female
DX: RC
8 - 10 cm from anal verge
Adenocarcinoma
Size: 6.3 - 7 cm
G2: Moderately differentiated
TNM unknown
Stage Unknown
Positive lymph nodes: none obvious on PET
Mets: none obvious on PET
CEA 0.5
Lymphovascular invasion: unk
Perineural invasion : unk
Surg planned Jan 2018
MSI status unknown
Lynch status unknown
KRAS/BRAF status unknown
LAR, planned January 2018
Ileostomy,temp, planned
Chemo/rad October, November 2018
Chemotherapy following surgery unknown

NHMike
Posts: 862
Joined: Fri Jul 21, 2017 3:43 am

Re: New Member here on the forum

Postby NHMike » Fri Dec 08, 2017 2:17 pm

Cancer is confusing stuff as you have to deal with a lot of services, appointments, worry, and social aspects (what to tell spouse, kids, relatives, coworkers, etc.). I think that you would have been a lot better off coming here and asking when you were diagnosed but that's in the past.

I went to a local hospital with a lot of blood in the toilet and they did a scan and then a Colonoscopy and biopsy and it was cancer with three suspicious lymph nodes. So you're in better shape than I'm in, probably Stage 3A (not sure if tumor size could change that). My GI guy contacted the oncologist and the oncologist contacted the radiation guy. The oncologist and radiation guy meet weekly in a "board meeting" to discuss patients. Several people recommended me getting a second opinion and we had Mass General Hospital (#12 nationally) and Dana Farber Cancer Institute (#4 nationally) an hour away. So I setup second opinion appointments for oncology and radiation and an appointment with a Board Certified Colorectal Surgeon. It took me two weeks to setup the appointment and that was frustrating. I found out why they are so hard to get a hold of - they do an incredible volume of patients. I could generally get an appointment with local doctors on short notice.

The DFCI oncologist and radiation doctors agreed with the local doctors so I used the local doctors for Oncology and Radiation and that went well. I believe that the surgeon asked me to call her office about a week after chemo and radiation ended to schedule an MRI for surgical and pathology purposes. The surgery was then about 6 or 7 weeks later. If you have a top cancer hospital available (and it sounds like you do), then I'd at least get second opinions from them. If you feel that your local hospital or doctors aren't up to the job, then you could look for another hospital if there are services locally. I have a relative of a brother-in-law that died because of treatment issues. She eventually did try going to Dana Farber but by then it was too late. Something that should have been treatable turned out badly.

You need to keep all of the information around and communicate it to your doctors when you go to see them. The hospitals that I use are on EPIC (major Electronic Medical Records software) so they can see my results across hospitals but I kept a lot of information (contacts, labs, etc.) on my phone so that I could provide information to doctors and others should they need them. Communication amount doctors, nurses, etc. isn't always smooth and it's in your best interest that your team be informed. Get to know your hospital portal(s) so that you can retrieve test results, appointment information and communications with your doctors in a timely manner.

I think that your GP is just looking out for you in suggesting a second opinion. I just saw a 2009 paper comparing open to laparoscopic and open was 2-4% less recurrence than laparoscopic. I had expected laparoscopic as so many people get it but my surgeon did open surgery. I asked why afterwards and she said that I had a narrow pelvis which would make laparoscopic more difficult. I'd guess that recovery would be faster and easier with laparoscopic but I'm sure that my surgeon made the best decision for me. Your GP also might be suggesting that you might get a better surgeon at Stanford - it's hard to tell. Getting a second opinion generally isn't a bad thing unless it's too challenging to arrange. You could also just discuss laparoscopic vs open with your GI surgeon. Has he/she already seen your scans to plan the surgery?

BTW, my story is at viewtopic.php?f=1&t=58447&start=405 and it's incredibly long and verbose but it's what I went through. Lots of others document their process and progress here. And you can always ask questions. We know what you're going through as we're going through it or have gone through it or we're going through it with loved ones.

Your cancer is pretty high up from the AV so hopefully that means good functioning after your reversal if you get an ileostomy. So you could be Stage II or IIIA - overall not the worst of places to be with cancer.

If cost isn't an issue, then you might consider Genomic Tumor testing to see exactly what gene mutation you have.

Learning Curve: The Surgeon as a Prognostic Factor in Colorectal Cancer Surgery

http://eknygos.lsmuni.lt/springer/404/86-104.pdf

Thirteen consultants, none of whom had a special interest in colorectal surgery, operated on 645 patients with colorectal cancer. Outcome differed tremendously between the individual surgeons. The rate of curative resection varied from 40% to 76%, postoperative mortality from 0% to 20%, local recurrence from 0% to 21%, anastomotic leakage from 0% to 25%, and survival at 10 years from 20% to 63%. These important differences in outcome were not entirely explained by differences in patient population (case-mix, e.g., more advanced tumor stage). The existence of a significant inter-surgeon variability was hereby proven. The individual surgeon was later identified as an independent prognostic factor for the frequency of locoregional recurrence and survival in rectal cancer patients by applying multiple logistic regression analysis adjusting for case mix differences (Hermanek et al. 1995). A great number of publications followed, investigating the prognostic role of the surgeon as well as of surgeon- and hospital-related factors (e.g., board certification, subspecialty training, annual caseload, teaching status). Most tumor-related, patient-related, and treatment-related predictors of outcome cannot be altered. The majority of surgeon- and hospital-related factors, however, can be influenced positively. Herein lies great promise, since an enhancement of surgeon and hospital related factors will lead to a significant improvement in the patient’s outcome.
Last edited by NHMike on Fri Dec 08, 2017 6:33 pm, edited 1 time in total.
6/23/17: ER rectal bleeding; Colonoscopy
7/13: Stage 3B rectal. T3N1bM0. 5.2 x 4.5 x 4.3 cm. Lymphs: 6 x 4 mm, 8 x 6, 5 x 5
7/31-9/8: Xeloda 3,400 mg/day+radiation
7/5: CEA 2.7; 8/16: 1.9; 9/8: 1.8; 11/30: 0.6; 12/20 1.4
MSS, KRAS G12D
10/6: 2.7 x 2.2 x 1.6 cm (-90%). Lymphs: 3 x 3 mm (-62.5%), 4 x 3 (-75%), 5 x 3 (-40%). 5.1 CM from AV
10/30: LAR, Temp Ileostomy, Path Complete Response
12/20: Started CapeOx

User avatar
susie0915
Posts: 656
Joined: Wed Aug 02, 2017 8:17 am
Facebook Username: Susan DeGrazia Hostetter
Location: Michigan

Re: New Member here on the forum

Postby susie0915 » Fri Dec 08, 2017 2:34 pm

If you are feeling uncomfortable at all a second opinion is warranted. I spoke with surgeons, oncologists, and radiation oncologists from two different hospitals. Both agreed on what the treatment would be, but I did go with the larger hospital, which was not the one where I was diagnosed. There are many facilities connected with the hospital in the area and have used all of them for different tests, appointments and procedures. Surgery and radiation/chemo was at the main hospital downtown, but chemo after surgery I was able to do chemo after surgery closer to home. I am very pleased with the coordination of all the doctors and any communication I have had with them. Both the time in which I receive a response and the answers I have received. Treatment isn't easy, and you need to feel like you are receiving the best care possible and have a good relationship with your medical team. It cannot hurt to go to Stanford and get a second opinion. My first inclination was to go with my original doctors as they seemed to be fine and I just wanted to get moving on my treatment, but it only delayed things a couple weeks as I was able to get in pretty quickly for a second opinion. I'm sorry you had to deal with so many awful side affects during chemo/radiation. I hope you are feeling better.
58 yrs old Dx @ 55
5/15 DX T3N0MO/ 2A
6/15 5 wks chemo/rad
7/15 sigmoidoscopy/scar tissue left
8/15 Pet scan NED
9/15 LAR
0/24 nodes
10/15 Bowel blockage. surgery,early ileo rev, c-diff inf :(
12/15 6 rds of xelox
5/16 Clear CT lung scarring/inflammation
9/16 clear colonoscopy
4/17 CT 4mm lung nod onc feels scar tissue
7/17 no change lung nodule
10/17 Clear pel/abd CT
11/17 CEA<.5
1/18 CT/Lung no change in 4mm nodule or scarring/inflammation

User avatar
O Stoma Mia
Posts: 982
Joined: Sat Jun 22, 2013 6:29 am

Re: New Member here on the forum

Postby O Stoma Mia » Fri Dec 08, 2017 2:42 pm

retiredteacher wrote:...Any advice would be helpful. I think I need to def. see what Stanford has to say..

Stanford - Cancer scorecard (Ranked #11 nationwide)
https://health.usnews.com/best-hospitals/area/ca/stanford-hospital-and-clinics-6932330/cancer

Stanford - Colon cancer surgery scorecard
https://health.usnews.com/best-hospitals/area/ca/stanford-hospital-and-clinics-6932330/colon-cancer-surgery

Note: Stanford is an NCI-designated cancer center.
.
Obtaining a second opinon -- Stanford surgery
https://stanfordhealthcare.org/medical-clinics/surgery-clinic/patient-resources/second-opinion.html
.
.
◄▐▐▐▐▐▐▐ ►

Useful Links:

How to Create a Signature
https://coloncancersupport.colonclub.co ... 97#p421597

How to Find a Board-Certified Surgeon
viewtopic.php?f=1&t=52349&p=410280#p410280

How to interpret a Pathology Report
viewtopic.php?f=1&t=51436&p=399172#p399172

Understanding TNM Staging
http://www.cancer.net/cancer-types/colo ... cer/stages

retiredteacher
Posts: 4
Joined: Sat Oct 21, 2017 1:34 pm

Re: New Member here on the forum

Postby retiredteacher » Sun Dec 10, 2017 1:51 pm

Thank-you for the responses! Spent most of a day reading every entry NHMike - wow - wish I had come here first. Extremely helpful. Also the Stanford stats. I worked backing up my husband's cancer Dx TWICE over the last thirteen years and wass a pretty effective caregiver and advocate, but less competent working on my own behalf! The dehydration and sickness from the Xeloda probably didn't help! Looking forward to exploring the Stanford option and refocusing my efforts in a more informed manner. THANK-YOU!!!!!
63 yo female
DX: RC
8 - 10 cm from anal verge
Adenocarcinoma
Size: 6.3 - 7 cm
G2: Moderately differentiated
TNM unknown
Stage Unknown
Positive lymph nodes: none obvious on PET
Mets: none obvious on PET
CEA 0.5
Lymphovascular invasion: unk
Perineural invasion : unk
Surg planned Jan 2018
MSI status unknown
Lynch status unknown
KRAS/BRAF status unknown
LAR, planned January 2018
Ileostomy,temp, planned
Chemo/rad October, November 2018
Chemotherapy following surgery unknown

Lee
Posts: 5404
Joined: Sun Apr 16, 2006 4:09 pm

Re: New Member here on the forum

Postby Lee » Sun Dec 10, 2017 4:50 pm

Because you are dealing with rectal cancer, make sure you have a board certified "Colon Rectal" surgeon doing your surgery. They have the extra training you will need be3cause it is rectal cancer.

Glad you found us. There is a lot of information on this forum. You will also find a lot of support here because we have all walked in your shoes.

Here is a sticky you might want to look over.

viewtopic.php?f=1&t=5366

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 - 10 years and counting!

TheSquire
Posts: 10
Joined: Wed Apr 26, 2017 11:09 am

Re: New Member here on the forum

Postby TheSquire » Sun Dec 10, 2017 8:59 pm

You definitely should go to Stanford for a second opinion. You should get a DRE and flex Sig exam of your rectum to assess the tumor post the chemoradiation. Next step would be XelOx for several weeks. Surgery might not be necessary depending on your stage and how well you respond to the treatment. The side effects of radiation and chemotherapy are bad at the end but manageable.
Age 53, male. Diagnosed with rectal cancer in lower rectum on 3/21/17. T2, N0, M0. No surgery. Going with Chemo-radiation approach. Started treatment on 4/25/17. Eight 14-day cycles of XelOx. Ended treatment on 11/3/17. Last rectal exam (12/7) shows no tumor/complete response. Now on "watch and wait."

menreeq
Posts: 51
Joined: Fri Jun 30, 2017 10:26 am

Re: New Member here on the forum

Postby menreeq » Mon Dec 11, 2017 1:46 am

No harm in getting second opinion. You could also ask about lap vs open vs robotic.

I had my surgery done at Stanford and was very happy with the care I received.
Stage IIA rectosigmoid CC (T3N0M0)
Dx 6/5/17 @age 41, mom to 5 & 2yo girls
Workup: c-scope, EUS, rectal MRI, CT C/A/P
AdenoCA 5.5cm, WHO Grade 2, 0/22 LN, no distant mets
CEA 1.9 (6/5/17)
No lymphovasc/perineural invasion, clear margins
MSI intact, OncotypeDx RS 7
Lap sig colectomy 6/23/17, no ileo/colostomy
Genetics counseling negative for mutations, 4 VUS
Started Xeloda monotherapy 8/13/17-1/22/18

retiredteacher
Posts: 4
Joined: Sat Oct 21, 2017 1:34 pm

Re: New Member here on the forum

Postby retiredteacher » Fri Jan 05, 2018 2:33 pm

Still working on getting that Stanford second opinion; I am now in their system, have been contacted by an intake nurse before making an appt. w/surgeon. They are wanting a PET and CT with contrast and are going to try to get that scheduled at their facility; failing that, I would have the imaging done here locally prior to consult. I am shocked at the level of information they want (as well as most of you here have) versus my local treatment. My local surgeon is board certified, but did not ask for an ultrasound prior, and has ordered no imaging post neoadjuvant rad/xeloda. Stanford says I am still in the window where they can get good pictures. Went to GP for re-up of pain killers; he found an anal fissure I guess was missed by the surgeon 2 weeks after radiation ended - I am assuming caused by the radiation. Taking betadine sits baths seem to be helping a bunch. Any advice, feel free.
63 yo female
DX: RC
8 - 10 cm from anal verge
Adenocarcinoma
Size: 6.3 - 7 cm
G2: Moderately differentiated
TNM unknown
Stage Unknown
Positive lymph nodes: none obvious on PET
Mets: none obvious on PET
CEA 0.5
Lymphovascular invasion: unk
Perineural invasion : unk
Surg planned Jan 2018
MSI status unknown
Lynch status unknown
KRAS/BRAF status unknown
LAR, planned January 2018
Ileostomy,temp, planned
Chemo/rad October, November 2018
Chemotherapy following surgery unknown

User avatar
susie0915
Posts: 656
Joined: Wed Aug 02, 2017 8:17 am
Facebook Username: Susan DeGrazia Hostetter
Location: Michigan

Re: New Member here on the forum

Postby susie0915 » Fri Jan 05, 2018 3:51 pm

I had an endoscopic ultrasound prior to treatment. That is where the stage of my tumor was diagnosed. Also had a sigmoidoscopy after chemo/radiation so the surgeon could check the response. He said all that was left was scar tissue, may not need chemo after surgery. Unfortunately there were minimal residual cancer cells so did do chemo. Sounds like the plan of treatment at Stanford is much more extensive. It's probably a good thing you contacted them.
58 yrs old Dx @ 55
5/15 DX T3N0MO/ 2A
6/15 5 wks chemo/rad
7/15 sigmoidoscopy/scar tissue left
8/15 Pet scan NED
9/15 LAR
0/24 nodes
10/15 Bowel blockage. surgery,early ileo rev, c-diff inf :(
12/15 6 rds of xelox
5/16 Clear CT lung scarring/inflammation
9/16 clear colonoscopy
4/17 CT 4mm lung nod onc feels scar tissue
7/17 no change lung nodule
10/17 Clear pel/abd CT
11/17 CEA<.5
1/18 CT/Lung no change in 4mm nodule or scarring/inflammation

Caat55
Posts: 34
Joined: Sat Dec 23, 2017 6:01 pm

Re: New Member here on the forum

Postby Caat55 » Sun Jan 07, 2018 12:05 am

retiredteacher wrote:Hi. Just completed 5 wks neoadjuvant Xeloda/rad. After initially feeling very optimistic about my drs. and the local hospital am now having some reservations, but unsure if justified. First two weeks went smoothly. Last three weeks extreme diarrhea and dehydration. Rec'd 2 liters IV H2O nearly daily by the final week. 20 - 25 lbs water retention in blown-up feet, ankles, legs, thighs. BP dropped to 90/40 on a couple of occasions; chose to stop BP meds. Finally asked them to stop with the IV fluid and suggested that the Advil might be contributing to the edema (Dr Google.) I believe the patient has the responsibility to be informed and to be his or her own advocate, and thought I had done a pretty good job upfront but have to state that my naivete and ignorance far outweighs my knowledge. I am leaving out details, but overall, it seems the left hand doesn't know what the right hand is doing, but I don't possess the expertise nor the mental state to really evaluate but I was pretty scared over the Thanksgiving holiday - BP, water retention, diarrhea. Hospital's Nurse Navigator program was only a pre and post questionairre - that's it! Dr's appear to not be a truly interdisclipinary team; each one one works within their own box of expertise, and it was never evident that they ever communicated with each other (aside from the initial tumor board mtg.) Oncologist has a policy of email communication only, and only to medical assistants, with a 2 working day response time, but first email question contact took a week because the medical assistant was off duty. Could not get in to see oncologist at the four week mark as directed (I did not know appts were booked a month in advance for him, and could not get to see him until one day after the last radiation/Xeloda treatment.) Oncologist said the radiologist should have backed off treatments due to my dehydration etc. and gave me a prescription for diphenoxylate-atropine (lomotil) which was effective. Weight dropped from 145 to 119 in one week. Surgeon says I came in way to early to see her (at the two week post Rad mark) and that I needed to see her at the two week post radiation mark. (?) I made a huge mistake in not keeping my GP in the loop since day one - saw him yesterday re: what to do about the BP. He was not consulted on any of the cancer referrals - my mistake, I went with the GI doc's and our past family experience, but wow, things have changed in the last decade. We only have one GI surgeon locally and she has a very good reputation. BUT GP is concerned about the planned surgery (laparoscopic LAR) and is recommending that I get a second opinion from Stanford surgery. I have never been sick before; want to have a high confidence level in my team and want to have a positive outlook but at this point pretty confused. Diagnosis of IBS 4 yrs ago, w/o lower scope. Rectal cancer about 8 - 10 cm from anal verge. PET scan shows no obvious organ or lymph invasion. No initial diagnosis, aside from cancer, rectal. Sorry this is so dang long. Any advice would be helpful. I think I need to def. see what Stanford has to say. If this post needs to go on another topic or list, please advise. I need to communicate with someone.


It is a shock and so much to take in. My story is VERY similar to yours.
I got my second opinion from Dr. Dormandy at El Camino Cancer Center. He referred me to Dr. Shelton at Stanford, Colorectal cancer surgeon. It was fast, they have been fantastic, supportive and worked with my on scheduling as I am three hours away. He is supposed to be best at maintaining rectal function, anal control for low tumors. I am getting Laparoscoptic LAR at Stanford at end of month.
55 y.o. Female
Dx 9/26/17 RCStage 3
Completed 33 rad. Tx, xeolda
MRI scheduled 1/4/18
Surgery scheduled1/31/18

retiredteacher
Posts: 4
Joined: Sat Oct 21, 2017 1:34 pm

Re: New Member here on the forum

Postby retiredteacher » Wed Jan 17, 2018 9:43 am

Thank-you! Was able to get an insurance auth for Stanford second opinion. In addition to skipping the rectal ultrasound for initial staging, seems we also skipped post radiation/xeloda pictures. (Sure there are good reasons for skipping the diagnostics, but it's my body and cancer, want to "go by the book.") Stanford wants more; brought my original oncologist back into discussions. I just called him and shared my frustration; he has ordered the scans Stanford needs; communication with his MA is super. Scheduling scans now and hope to get in for consult soon. Then will have to deal with my insurance as Stanford is out of network for the surgery. I have learned so much; I want to start an informational local CRC support group. This board has been so very helpful. THANK-YOU COLON TALK!!!!
63 yo female
DX: RC
8 - 10 cm from anal verge
Adenocarcinoma
Size: 6.3 - 7 cm
G2: Moderately differentiated
TNM unknown
Stage Unknown
Positive lymph nodes: none obvious on PET
Mets: none obvious on PET
CEA 0.5
Lymphovascular invasion: unk
Perineural invasion : unk
Surg planned Jan 2018
MSI status unknown
Lynch status unknown
KRAS/BRAF status unknown
LAR, planned January 2018
Ileostomy,temp, planned
Chemo/rad October, November 2018
Chemotherapy following surgery unknown

Caat55
Posts: 34
Joined: Sat Dec 23, 2017 6:01 pm

Re: New Member here on the forum

Postby Caat55 » Wed Jan 17, 2018 4:06 pm

Just had an MRI at Stanford, different process than was done originally at local hospital. That could be why they want more or different tets.So far treatment recommendations have been the same between but just slightly more aggressive in Bay Area than my oncologist. Surgery recs were same but Stanford's surgeon specializes in this, is solely colorectal cancer surgeon.
I go back this week to meet is Tony nurse and anesthesiologist.
Good luck.
55 y.o. Female
Dx 9/26/17 RCStage 3
Completed 33 rad. Tx, xeolda
MRI scheduled 1/4/18
Surgery scheduled1/31/18


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