My mom diagnosed with colorectal cancer

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Tri girl
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Joined: Sun Aug 06, 2017 10:26 pm

My mom diagnosed with colorectal cancer

Postby Tri girl » Mon Aug 07, 2017 8:15 am

My mom was diagnosed with colorectal cancer on Monday, July 31. She had a cat scan on Tuesday, Aug. 1 and was told that she would find out how far along the cancer is and if it has spread on Tuesday, Aug.7 (tomorrow). To say the least, it has been very scary and stressful for her (and me) during this waiting period. Anyway, my mom lives in small town Iowa and I live in Arizona but most likely I will be moving back to Iowa to care for her (depending on her results). Are there any specific questions she should ask the radiologist tomorrow? I would really like to have my mom move to AZ to go to a top notch cancer hospital like Mayo Clinic. Does anyone know if that is possible since she doesn't live here in AZ? At what point should she get a 2nd opinion on any treatment program? I am looking for advice and support. Thanks.

Deb m
Posts: 340
Joined: Tue Jan 14, 2014 10:08 am

Re: My mom diagnosed with colorectal cancer

Postby Deb m » Mon Aug 07, 2017 10:29 am

Welcome to the board,

Hopefully tomorrow after your appointment you'll have a better idea of what your dealing with. I highly recommend second opinions no matter what the stage, I think they always prove to be beneficial in some way. The second opinion should come from a major cancer center if possible. MDAnderson in Houston TX is where my husband and I went. Sloan Kettering in New York, and the Mayo clinic in MN are also very good. There are others as well. If she chooses to have her surgery locally, be sure that it's a board certified colorectal surgeon. Not all surgeons have this credential, and it's very important! Most insurance companies allow you to seek second opinions and treatments elsewhere and you don't have to live in the same state. We live in Kansas and we had our second opinion and follow ups at MD Anderson in Texas. Was she diagnosed by colonoscopy? And if so did they do biopsies?

Some questions to ask at your appointment tomorrow should be:

1.) What grade was the tumor, well differentiated, moderately differentiated, or poorly differentiated.(Low grade or High grade) This tells you how aggressive the tumor may be. This information could of been obtained from the biopsy taken during the colonoscopy, assuming there was one.
2.) Where in the colon was it, and what type of surgery are you recommending.
3.) The results of the CT scan, did it show anywhere else.
4.) Flat out tell him that you feel you want a second opinion, and if he gets on the defense, that's probably not a good sign and I would maybe be looking for another local doc.
5.) If you go the second opinion route, your local hospital should send all the blood work, colonoscopy results, ct,s and anything else they have done to where you choose to go.
6.) What type of chem are you advising. Probably won't say till after surgery ect.

Depending on where the tumor is, rectal or colon, the treatment will be different. They usually can't stage the cancer till after the surgery unless the ct scans shows spread, then it's a stage 4. Treatments obviously depends on the stage so they won't be able to answer specifically what treatment they recommend yet till after surgery . If it's rectal cancer, they will probably want to do radiation first before surgery. If it's colon , then they will do the surgery first most likely. I can't stress enough in getting a board certified colorectal surgeon!

I found that the waiting was one of the worst parts. Once we had all the information and started treatment, things got a bit better as far as anxiety. At least then we knew exactly what we were dealing with and could start taking care of it! Tomorrow you'll get some answers and after the surgery you'll have the whole picture.

Hang in there, one day at a time and you will get thru this!

This board is great. Just about anything you ask, somebody has experienced it and you get an answer. Glad you found it.

Deb m

Tri girl
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Joined: Sun Aug 06, 2017 10:26 pm

Re: My mom diagnosed with colorectal cancer

Postby Tri girl » Mon Aug 07, 2017 11:44 am

Thanks Deb m for replying so quickly. Just wondering what your thoughts were on the Mayo Clinic here in Phoenix for a second opinion and possible surgery. In your opinion, would Mayo Clinic in MN be a better choice? I just want her to get the best care possible. I appreciate your thoughts. And, also thank you for advising us on all the questions we should ask. I will be on conference/speaker phone with her tomorrow during her doctor visit. What I know right now is that the tumor is located on the lower part of her colon near the rectum located in a "precarious" spot (whatever that means). She is 74 years old and noticed some blood in her stool about 6 weeks ago. Well, she thought it was hemorrhoids because she experienced that before and they simply went away. But, not this time. Thanks again for all your advice and support. I will keep you posted on tomorrow's outcome.

JJH
Posts: 63
Joined: Mon Apr 24, 2017 7:26 am
Location: Europe

Re: My mom diagnosed with colorectal cancer

Postby JJH » Mon Aug 07, 2017 1:21 pm

For your information, Mayo Clinic Phoenix ranks #26 nationwide for cancer, while Mayo Clinic Minnesota ranks #3 nationwide . You can read about it here:

http://health.usnews.com/best-hospitals/area/az/mayo-clinic-6860019

NHMike
Posts: 166
Joined: Fri Jul 21, 2017 3:43 am

Re: My mom diagnosed with colorectal cancer

Postby NHMike » Mon Aug 07, 2017 1:32 pm

Tri girl wrote:Thanks Deb m for replying so quickly. Just wondering what your thoughts were on the Mayo Clinic here in Phoenix for a second opinion and possible surgery. In your opinion, would Mayo Clinic in MN be a better choice? I just want her to get the best care possible. I appreciate your thoughts. And, also thank you for advising us on all the questions we should ask. I will be on conference/speaker phone with her tomorrow during her doctor visit. What I know right now is that the tumor is located on the lower part of her colon near the rectum located in a "precarious" spot (whatever that means). She is 74 years old and noticed some blood in her stool about 6 weeks ago. Well, she thought it was hemorrhoids because she experienced that before and they simply went away. But, not this time. Thanks again for all your advice and support. I will keep you posted on tomorrow's outcome.


Mayo in MN is ranked #3 for cancer by US N&WR. Mayo in AZ is ranked #26. Convenience does matter, though, at least for treatment.

Coverage is dependent on her health insurance. Given her age, I assume that she has Medicare and I assume that her care options are governed by their rules. Long-distance care for parents is very hard. Hopefully she has some additional resources locally.
Mike in NH: Rectal Bleeding biopsy June 23, Diagnosed Stage 3B rectal cancer late July 2017 via MRI.
T3, N1b, M0.
Started Xeloda + Radiation 07/31/17, to continue until 09/07/17.
CEA before treatment: 2.7. CEA after 14 treatments 1.9.

Deb m
Posts: 340
Joined: Tue Jan 14, 2014 10:08 am

Re: My mom diagnosed with colorectal cancer

Postby Deb m » Tue Aug 08, 2017 8:16 am

I have not heard anything about the Mayo in Az. That's not to say it's not good, I just can't give you advice on a place I know nothing about. I have a friend who went to the Mayo in MN for breast cancer surgery and treatment and was very impressed. Many of our members here got to Sloan Kettering in New York and are very please with their care. We went to MD Anderson and I have nothing but positive information from there. My sister was treated for lymphoma in Seattle WA, the Fred Hutchinson Cancer Center and again a very positive experience. I just don't have any information on Mayo in AZ.

Traveling for the duration of treatments can be very tiring, but at least go somewhere and have them look over everything, make sure the staging is correct, have them look over the pathology or even do their own pathology on the resected tumor/tissue and lymph nodes, have them look over the treatment plan to be sure its accurate and the best for your situation. They can micro manage everything, and you can have you treatments done locally. Many people do that.

When we went to MDA for a second opinion, they staged my husband differently than the local hospital and the treatment plan was way different. The oncologist at MDA about fell off the chair when we told him what the local oncologist was suggesting for treatment. I believe that second opinion saved my husbands life! We live in a very rural area in Kansas and there is really nothing around us that's good for serious medical situations, so a second opinion was absolutely necessary. As I said Mayo in AZ may be good, I just don't know, but I would still have a second set of eyes look everything over before you make any major decisions.

Your mom is very lucky to somebody like you to help her. I hope you get some more answers today and am wishing you the best.

Deb m

DarknessEmbraced
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Location: New Brunswick, Canada

Re: My mom diagnosed with colorectal cancer

Postby DarknessEmbraced » Tue Aug 08, 2017 5:17 pm

I'm sorry for your Mom's diagnosis and hope the meeting with the radiologist goes well and you get more answers!*hugs*
Diagnosed 10/28/14, age 36
Colon Resection 11/20/14, LAR (no illeo)
Stage 2a colon cancer, T3NOMO
Lymph-vascular invasion undetermined
0/22 lymph nodes
No chemo, no radiation
Clear Colonoscopy 04/29/15
NED 10/20/15
Ischemic Colitis 01/21/2016
NED 11/10/16

Tri girl
Posts: 5
Joined: Sun Aug 06, 2017 10:26 pm

Re: My mom diagnosed with colorectal cancer

Postby Tri girl » Tue Aug 08, 2017 9:54 pm

I want to give you an update on my mom. She met with her doctor today and received some "good" news, I guess. Because I live in AZ and she lives in Iowa, I wanted to be on speaker phone just so I could hear what the doctor said first-hand. We'll the doctor advised against it because he said it would be a distraction so I received the information from my mom. The cancer has not spread beyond her colon. She is going to receive a port tomorrow and start chemo on Friday in Council Bluffs. My sister and dad accompanied her at the appt but no one took notes. I am frustrated because I had a lot of questions but my mom didn't have any answers. She is basically putting her trust into the doctors. But, she is relieved and feeling blessed. I hope that feeling is warranted but I am worried that she is putting too much trust into her doctor. I do not want to upset her and add undue stress by asking too many questions. I am under the impression her doctor convinced her that this is no big deal. I do want to thank you for all your advice and support. I have read some of the threads and there are a lot of caring people on this forum.

NHMike
Posts: 166
Joined: Fri Jul 21, 2017 3:43 am

Re: My mom diagnosed with colorectal cancer

Postby NHMike » Wed Aug 09, 2017 6:11 am

It is not easy to learn all of the things that a lot of people here soak up after spending a few weeks here and those unfamiliar with online forums might not look to them for help with problems but it is good to know that your mom has help locally. Doctors and hospitals should be used to relatives asking questions, and, yes, even from remote locations. We've done that with my mother for many years and things like maintaining a list of meds and vitamins and conditions helps in communications.

Perhaps you could get your sister or dad to ask questions or get them up to speed on the condition overall?
Mike in NH: Rectal Bleeding biopsy June 23, Diagnosed Stage 3B rectal cancer late July 2017 via MRI.
T3, N1b, M0.
Started Xeloda + Radiation 07/31/17, to continue until 09/07/17.
CEA before treatment: 2.7. CEA after 14 treatments 1.9.

Tri girl
Posts: 5
Joined: Sun Aug 06, 2017 10:26 pm

Re: My mom diagnosed with colorectal cancer

Postby Tri girl » Wed Aug 09, 2017 7:17 pm

My mom did not get the port in today. She will not start chemo until next week, we think. She met with an oncologist today and he wants to do a CT scan and an MRI. He told my mom because he wants to see if the cancer has spread and to "stage" it. Previously she told me that her general doctor told her that the cancer has not spread. This all sounds like an unorganized mess but my mom thinks she is in "good" hands so that's good. She was also told by the oncologist today that she will need 6 weeks of chemo, then a colostomy, then radiation. Well, I am wondering why the general doctor told her that the cancer has not spread but the oncologist wants to do these tests to see if it has spread. This is all so confusing. My mom had an MRI and biopsy done (in the beginning) that showed cancer. That's what she told me anyway. Do you think a general doctor would have enough information to tell her that the cancer has not spread? My mom is putting her life and trust into these doctors and not even questioning anything...it is so frustrating. I think I stress her out by asking too many questions. And, she told me today that she is just going to stay local instead of going to the Mayo Clinic. I called the Mayo Clinic in Phoenix and they told me to call the Rochester location so I did. Mayo Clinic will take her because she is on Traditional Medicare not Medicare Advantage (I feel like I am a Medicare expert now) so that was good news. But, my mom said her butt hurts and she cannot fathom the thought of sitting in a car for 4 hours to drive to Mayo. Can you believe it? Thanks for your help.

Lee
Posts: 4974
Joined: Sun Apr 16, 2006 4:09 pm

Re: My mom diagnosed with colorectal cancer

Postby Lee » Wed Aug 09, 2017 8:18 pm

I live in the Phoenix area. 13 years ago, I had my surgery at Desert Banner in Mesa. At that time it was one of the top 15 hospitals in the nation for treating cancer. I'm NED today, so I do believe my surgeon was successful. I can HIGHLY recommend Desert Banner.

I too have a permanent colostomy, for me the best decision. While radiation was effective, it destroyed 2/3 of my rectal muscles and I was tied to toilet (for hours) anytime I ate. Today I have my old life back, that bag does not hold me back. Believe me there are more people out there with a bag than most people are aware of.

Good luck with our mom. Make sure a board certified colon rectal surgeon is doing her surgery vs a general surgeon. You really want a surgeon with the extra training especially when dealing with rectal cancer.

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!

Deb m
Posts: 340
Joined: Tue Jan 14, 2014 10:08 am

Re: My mom diagnosed with colorectal cancer

Postby Deb m » Thu Aug 10, 2017 7:55 am

In my opinion, her general doctor would NOT have enough information to say that her cancer has not spread. I think the oncologist is correct in doing further scans ect. to check for spread. Once again, I would highly recommend a second opinion.

What you're going thru right now is the worst part. Once you have the whole picture and start doing something about it, you'll feel a bit better. It's a long road to travel down and you will encounter many bumps along the way. Just take one day at a time and try not to look at all that's in front of you, focus on what you've already done and whats behind you already, it will give you some sanctification of accomplishment.

Wishing you the best,

Deb m

janklo
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Facebook Username: JanetKlostermann

Re: My mom diagnosed with colorectal cancer

Postby janklo » Thu Aug 10, 2017 12:43 pm

Deb--I live in Omaha. You could see about your mom going to UNMC. That is a university research hospital and I know others who have been treated there. It's in Omaha. PM me for the name of an oncologist/surgeon. I think you don't need to go to Mayo, your mom can get treatment close to home.

My daughter died from cc so I've done lots of research. It's always best to be your own advocate in healthcare. I would say get a CT, get a petscan, make sure what is going on with mom before surgery or treatment.
Mom to 28 yo daughter
colectomy 2/22/10, stage 3C, signet cell
7/2011 peritoneal mets
HIPEC September 2012, difficult recovery
Hospice 10/31/2012, Died 11/16/2012

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ocstacy
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Re: My mom diagnosed with colorectal cancer

Postby ocstacy » Fri Aug 11, 2017 2:04 am

My mom was diagnosed with colorectal cancer on Monday, July 31. She had a cat scan on Tuesday, Aug. 1 and was told that she would find out how far along the cancer is and if it has spread on Tuesday, Aug.7 (tomorrow). To say the least, it has been very scary and stressful for her (and me) during this waiting period.


You and I are going through similar things. I felt like I saved my mom's life in a way and I feel like it's from my college education as I studied Human Diseases and Allied Health.
I believe that my mom had cancer since 5 years ago but it was her fault for not getting a colonoscopy like her doctor has suggested. She just let me know about a couple weeks ago that she was too scared to go or of course like most people procrastinate just like myself.

Anyhow, my mom got diagnosed this past May, 2017 by a GI. When the nurse called me to pick her up, she mentioned that the dr. wanted to talk to me and I didn't think anything of it. I picked her up from her colonoscopy and the nurse was asking me all these questions like 1. when was her last colonoscopy? 2. How old is your mom? Anyhow, it was like a dream or an echo of the exact words coming from the doctor. He showed me all the photos of the scan and they looked clean and clear. Then he showed me a real ugly photo with a lump and white stuff of her rectum and said "This is a 6cm tumor and it's cancer, and it doesn't look good" It was like a movie and I didn't understand what he said. I said "Are you trying to tell me that my mom has cancer?" And he said "Yes, and it doesn't look good and most likely she will have a colostomy bag" I started to immediately cry and rush to the bathroom and call my husband and then my best friend panicking. I also text my dad and called but he didn't pick up because we stopped talking a couple years ago. I asked him if he could come over so I could talk to him. My mom was still out from the procedure. Since she was on twilight sleep, she could hear in the background. She mentioned she heard me crying.

Long story short, within 15 days I switched my mom's insurance company to medi medi so she could receive tx at the best cancer clinic in our area. After much research, I found the BEST colorectal surgeon (you must find a colorectal surgeon, I would suggest) She ends her tx next Wed. It has been a lot of ups and downs. When your mother has cancer, you have cancer. I see my mom pretty much every single day cause she lives next next door lol. She relied so much on me, I am her care giver. You won't know until your scan what stage. My mom is Stage 3.low grade adenocarcinoma. Stage 3A Best of luck.
Caregiver/daughter to dear mother age 77, diag.5/09/17
Rectal CA Stage 3A Low grade adenocarcinoma- 6 cm
Neoadjuv. Chemo/Rad. start 7/10/17 ended 08/16/17
Xeloda 2600 mg daily Rad.Onc Mon-Fri (28 days) -2 mth break
Lap. surgery @ Keck USC, Dr Sang Lee-chief- 10/2017
Possible chemo Xeloda post surgery
Prayers 4 "Complete Response" or "NED" I don't have the cancer but I am living the moment
My 1st colonoscopy is 08/18/17-age 39-hemmy's background- NERVOUS :? :roll: :|

Tri girl
Posts: 5
Joined: Sun Aug 06, 2017 10:26 pm

Re: My mom diagnosed with colorectal cancer

Postby Tri girl » Tue Aug 15, 2017 9:36 pm

My mom got her results from the CT scan and MRI. The cancer is stage 3c and spread to one lymph node. The tumor is 4cm. She is getting a port on Friday. Then, she will start radiation and chemo for 6 weeks. Each week she will get 4 straight days of radiation and on the fifth day she will get chemo. Repeat for 6 weeks. Then recover 4-6 weeks for the surgery. Her doctor ( specialist colorectal surgeon) told her the cancer is entirely on her rectum and she will most likely need a bag for the rest of her life. She is very nervous and scared. So am I. She wants to stay close to home and isn't interested in a 2nd opinion. I will respect her decision because all I do is add stress to the situation when I ask too many questions. I am so glad I found this forum. I am hopeful my mom will seek out this forum as well. There are so many caring people with a lot of knowledge. Thanks again for all your support.


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