NEW-Need some positivity here.

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teacher2017
Posts: 275
Joined: Sat Sep 09, 2017 1:18 pm
Facebook Username: Lydia Clark

Re: NEW-Need some positivity here.

Postby teacher2017 » Thu Sep 14, 2017 4:49 am

Lee wrote:Do you know if they found multiple polyps in you? Did this surgeon get any medical history from you or the Dr that did the scope?

Lee


I think according to the report there is a polyp near the tumor which will also be removed. This doctor did get medical history and said the pathology on the biopsy about genetics has not come back yet.
50 yo mom of 2 (15, 18)
DX stage 3c - 12/17 LN. T3
8" colon resection 9/22/17
6.1cm tumor
folfox 11/17-4/18
CEA -1.4 11/8/17
Colonoscopy- 5/18-CLEAR!
Cea -1.8 6/18
Cea -2.1. 8/18
8/10/18 Stage 4
1cm met in seg.8 liver
Liver resection-9/18
Cea -1.5/1.2
Port removal-9/19
Cea -1.2 10/19
Cea -1.1 02/2020
Cea - 1.2 5/20
Cea-1.1 9/20
Cea- 1.3 2/21
Cea.1.3 5/21

teacher2017
Posts: 275
Joined: Sat Sep 09, 2017 1:18 pm
Facebook Username: Lydia Clark

Re: NEW-Need some positivity here.

Postby teacher2017 » Thu Sep 14, 2017 5:15 am

Beckster wrote:
teacher2017 wrote:Did not like this Sloan surgeon. Told me all about my surgery before seeing my Ct scan. Basically dismissed that my lymph nodes were unremarkable. He said it is a tumor of a 60 year old. And I could get a resection or take the entire colon out and just resection the small intestine to the colon piece. To prevent more colon cancer. What on earth?!?!? Any one have this done?


Hi Teacher2017,

I am assuming that you are an educator...so am I. We both know how teachers can be...we want immediate feedback! I think that you need to be a little more specific. Where was the mass...rectum, right side, transverse, desending? My surgeon said that he normally does not see a tumor like mine until around 63 (right sided near the appendix). You can see in my signature all the information. He said 50% genetics and 50% environmental. If your CT scan and other tests state that it is localized and no lymph nodes are involved, you are probably Stage 1 or 2. Both do not involve any lymph nodes....that is a good thing. Your surgeon will probably want to do a resection and take out the part of the colon, which contains the mass. Many on this board, including me, have had a resection. That means the they are able to cure you. They took out the right side of my colon...in the hospital for two days. He told me after surgery that he got everything!

Now, depending on the pathology report after the surgery, the dr will determine if you need chemo. If it is Stage II, sometimes chemo is used as a preventative to prevent recurrence of the cancer. I took pills(Xeloda) for 6 months and had no port. It all depends on what the pathologist finds when he analyzes the specimen after surgery.

Take a deep breath! Everything will be ok. Write down all the questions you want to ask. Here are some suggestions (I used them when I spoke to surgeon).

1. How was the bloodwork and CEA level (from bloodwork).
2. Where the CT scan clear...showing no lymph node involvement or spread to liver or lungs?
3. Have them explain the surgery
4. How long will the surgery take and how long will I be in the hospital?
5. What is the preperative stage? Does he think it is Stage I, II....?
6. How long will it take for the pathology report to come back?
7. If the tumor is stage II or possible stage III, can he send out specimen to Oncotype to predict low, intermediate or high risk for chemo?

Good luck and let us know how you make out at the next appt. :D


Thank you so much for your response. My emotions are everywhere. I will ask all those questions listed.
Lydia666 wrote:
teacher2017 wrote:weisssoccermom & ValZen - Thank you so much! I have to stop googling. It makes me crazy.

Thank you all for your input!
I have so many questions...If it is an old and large tumor is it a stage 4? Will Chemo make me lose my hair? Can I still work? How do I tell a 12 and 15 yr old that their mother has cancer? It's a disgusting place to be.

You won't lose your hair!
You could still work!
Definitely not stage 4 because or based on size!
If you don't have nodes involved, that is pretty darn positive. The diagnosis and waiting for treatment is pure torture but you are in good hands. You will be treated. You can tell your children you need surgery for some digestive issues. You can give details when your are in a better place.
Much love and patience which sucks, i know!
Hugs!



Thank you so much. I hope so. This board is fabulous. It is the only thing that helps me HOPE. I just hope when they open me up there isn't any in anything. Please pray.
weisssoccermom wrote:One thing I want to stress to you is this. PLEASE, no matter how much you like your surgeon, do NOT let him tell you whether or not you need chemo. That is NOT his specialty and NOT his job. Too often, you'll find that the surgeon will give his/her 2 cents on whether or not the patient needs chemo or not. It is NOT the surgeon's job/place to tell the patient whether or not he/she needs chemo. On the other side, too many oncologists, when seeing a patient prior to surgery, will tell the patient which type of surgery he/she needs to have. Again, that is NOT the job of the oncologist. He/she is NOT a surgeon and should let the surgeon tell the patient which type of surgery he/she requires.

Just be aware that too often the doctors can and do overstep their boundaries. I had a good friend on this board who is now gone. She had a surgeon who decided for her that she didn't need chemo....totally opposite of what the oncologist believed. Terry didn't do chemo, her cancer spread and ultimately it took her life. Now, there is truly no way of knowing what would have happened had Terry had 6 months of chemo.....its just impossible to figure that out. We talked about it and the 'what ifs' were always present. Obviously, when a patient is newly diagnosed, he/she has no idea of what to do...what questions to ask, etc. You trust your doctor and go along with his/her recommendations. A good doctor will recognize his/her limitations and not overstep his/her boundaries.

I am certainly NOT saying that your surgeon will try to sway you one way or another with respect to cancer. PLEASE though.....let the specialist make that determination for you.....get an appointment with an oncologist and no matter what the surgeon recommends with respect to chemo....TALK WITH THE ONCOLOGIST before making a decision for yourself. It could make all the difference!


Great advice! I will definitely only listen to the oncologist regarding after surgery. Your posts make me more at ease. The devil I know....
50 yo mom of 2 (15, 18)
DX stage 3c - 12/17 LN. T3
8" colon resection 9/22/17
6.1cm tumor
folfox 11/17-4/18
CEA -1.4 11/8/17
Colonoscopy- 5/18-CLEAR!
Cea -1.8 6/18
Cea -2.1. 8/18
8/10/18 Stage 4
1cm met in seg.8 liver
Liver resection-9/18
Cea -1.5/1.2
Port removal-9/19
Cea -1.2 10/19
Cea -1.1 02/2020
Cea - 1.2 5/20
Cea-1.1 9/20
Cea- 1.3 2/21
Cea.1.3 5/21

teacher2017
Posts: 275
Joined: Sat Sep 09, 2017 1:18 pm
Facebook Username: Lydia Clark

Re: NEW-Need some positivity here.

Postby teacher2017 » Thu Sep 14, 2017 12:19 pm

Lee wrote:Do you know if they found multiple polyps in you? Did this surgeon get any medical history from you or the Dr that did the scope?

Lee


Yes he got my medical history. Other than this cancer, I seem fine. It's insane. Maybe a polyp by this cancer mass but they will throw that out too. I'm insane with worry.
50 yo mom of 2 (15, 18)
DX stage 3c - 12/17 LN. T3
8" colon resection 9/22/17
6.1cm tumor
folfox 11/17-4/18
CEA -1.4 11/8/17
Colonoscopy- 5/18-CLEAR!
Cea -1.8 6/18
Cea -2.1. 8/18
8/10/18 Stage 4
1cm met in seg.8 liver
Liver resection-9/18
Cea -1.5/1.2
Port removal-9/19
Cea -1.2 10/19
Cea -1.1 02/2020
Cea - 1.2 5/20
Cea-1.1 9/20
Cea- 1.3 2/21
Cea.1.3 5/21

teacher2017
Posts: 275
Joined: Sat Sep 09, 2017 1:18 pm
Facebook Username: Lydia Clark

Re: NEW-Need some positivity here.

Postby teacher2017 » Thu Sep 14, 2017 12:26 pm

Beckster wrote:
teacher2017 wrote:Did not like this Sloan surgeon. Told me all about my surgery before seeing my Ct scan. Basically dismissed that my lymph nodes were unremarkable. He said it is a tumor of a 60 year old. And I could get a resection or take the entire colon out and just resection the small intestine to the colon piece. To prevent more colon cancer. What on earth?!?!? Any one have this done?


Hi Teacher2017,

I am assuming that you are an educator...so am I. We both know how teachers can be...we want immediate feedback! I think that you need to be a little more specific. Where was the mass...rectum, right side, transverse, desending? My surgeon said that he normally does not see a tumor like mine until around 63 (right sided near the appendix). You can see in my signature all the information. He said 50% genetics and 50% environmental. If your CT scan and other tests state that it is localized and no lymph nodes are involved, you are probably Stage 1 or 2. Both do not involve any lymph nodes....that is a good thing. Your surgeon will probably want to do a resection and take out the part of the colon, which contains the mass. Many on this board, including me, have had a resection. That means the they are able to cure you. They took out the right side of my colon...in the hospital for two days. He told me after surgery that he got everything!

Now, depending on the pathology report after the surgery, the dr will determine if you need chemo. If it is Stage II, sometimes chemo is used as a preventative to prevent recurrence of the cancer. I took pills(Xeloda) for 6 months and had no port. It all depends on what the pathologist finds when he analyzes the specimen after surgery.

Take a deep breath! Everything will be ok. Write down all the questions you want to ask. Here are some suggestions (I used them when I spoke to surgeon).

1. How was the bloodwork and CEA level (from bloodwork).
2. Where the CT scan clear...showing no lymph node involvement or spread to liver or lungs?
3. Have them explain the surgery
4. How long will the surgery take and how long will I be in the hospital?
5. What is the preperative stage? Does he think it is Stage I, II....?
6. How long will it take for the pathology report to come back?
7. If the tumor is stage II or possible stage III, can he send out specimen to Oncotype to predict low, intermediate or high risk for chemo?

Good luck and let us know how you make out at the next appt. :D


This is on the lower left side. And I am scared that when they open me up there will be evidence of spread. They say four nodes close by are inflamed. Scared to death.
50 yo mom of 2 (15, 18)
DX stage 3c - 12/17 LN. T3
8" colon resection 9/22/17
6.1cm tumor
folfox 11/17-4/18
CEA -1.4 11/8/17
Colonoscopy- 5/18-CLEAR!
Cea -1.8 6/18
Cea -2.1. 8/18
8/10/18 Stage 4
1cm met in seg.8 liver
Liver resection-9/18
Cea -1.5/1.2
Port removal-9/19
Cea -1.2 10/19
Cea -1.1 02/2020
Cea - 1.2 5/20
Cea-1.1 9/20
Cea- 1.3 2/21
Cea.1.3 5/21

teacher2017
Posts: 275
Joined: Sat Sep 09, 2017 1:18 pm
Facebook Username: Lydia Clark

Re: NEW-Need some positivity here.

Postby teacher2017 » Fri Sep 15, 2017 3:48 pm

Can someone explain what CEA level
Is?
50 yo mom of 2 (15, 18)
DX stage 3c - 12/17 LN. T3
8" colon resection 9/22/17
6.1cm tumor
folfox 11/17-4/18
CEA -1.4 11/8/17
Colonoscopy- 5/18-CLEAR!
Cea -1.8 6/18
Cea -2.1. 8/18
8/10/18 Stage 4
1cm met in seg.8 liver
Liver resection-9/18
Cea -1.5/1.2
Port removal-9/19
Cea -1.2 10/19
Cea -1.1 02/2020
Cea - 1.2 5/20
Cea-1.1 9/20
Cea- 1.3 2/21
Cea.1.3 5/21

User avatar
JJH
Posts: 408
Joined: Mon Apr 24, 2017 7:26 am

Re: NEW-Need some positivity here.

Postby JJH » Fri Sep 15, 2017 4:49 pm

teacher2017 wrote:Can someone explain what CEA level is?

CEA is a tumor marker for colorectal cancer (and for some other cancers as well) and is sometimes (but not always) elevated at the time of diagnosis,

It is worthwhile to test for CEA level at diagnosis because if it is in fact elevated at diagnosis it might mean that it is a good marker for you and can be used in the future for tracking progress of your treatment over time. It might also be useful for detecting recurrences in the future.For many patients, however, CEA is not elevated at DX and is not a particularly good marker.
"The darkest hour is just before the dawn" - Thomas Fuller (1650)
●●●

User avatar
Robino1
Posts: 463
Joined: Fri Aug 11, 2017 12:09 pm
Facebook Username: Robin.lawthers
Location: Florida

Re: NEW-Need some positivity here.

Postby Robino1 » Fri Sep 15, 2017 6:17 pm

In my signature area I have my elevated CEA numbers. I take great pleasure in those numbers going down. It is still pretty high but the last check showed it going down finally.

Optimal number is less than 5. I have a long way to go... My next check should be coming up soon. I pray there is an even greater reduction.

I'm always checking other members CEA numbers if posted in their signature line. I get comfort from those that had higher numbers than mine and see them go back to normal ranges. CEA is a good marker for me. I will never let that test slide again like I did after my resection.
At 54 2014 1st colonoscopy colon cancer detect
Colon resect margins clear. No chemo Stage II
2017
Distend abd, pain in intestines.
CT scan seeding & Ascites
Lap diag - cancer on the omentum
CEA 217; 219
FOLFOX started 6/17
CEA 202
8/29/17 CT melting of tumor.
Latest CT scan shows 2 new tumors and return of ascites.
CEA: (2017)9/30 -109; 10/12 -99.1; 11/4 -90.7; 11/30 -70.7; 12/14 -83.4; (2018)1/4 -73.3; 2/1-84.2; 89.2; 89.8; 88.5; 81.8: 93.5; 107; 119
BRAF V600e

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susie0915
Posts: 945
Joined: Wed Aug 02, 2017 8:17 am
Facebook Username: Susan DeGrazia Hostetter
Location: Michigan

Re: NEW-Need some positivity here.

Postby susie0915 » Fri Sep 15, 2017 9:35 pm

My cea had never been higher than 1.1. Usually less than .5. My first wasn't taken until after I finished pre adjuvant therapy so don't know if it was elevated at dx. Probably cannot be used as a marker for me unless maybe it jumps above normal range.
58 yrs old Dx @ 55
5/15 DX T3N0MO
6/15 5 wks chemo/rad
7/15 sigmoidoscopy/only scar tissue left
8/15 PET scan NED
9/15 LAR
0/24 nodes
10/15 blockage. surgery,early ileo rev, c-diff inf :(
12/15 6 rds of xelox
5/16 CT lung scarring/inflammation
9/16 clear colonoscopy
4/17 C 4mm lung nod
10/17 pel/abd CT NED
11/17 CEA<.5
1/18 CT/Lung no change in 4mm nodule
5/18 CEA<.5, CT pel/abd/lung NED
11/18 CEA .6
5/19 CT NED, CEA <.5
10/19 Clear colonscopy
11/19 CEA <.5

teacher2017
Posts: 275
Joined: Sat Sep 09, 2017 1:18 pm
Facebook Username: Lydia Clark

Re: NEW-Need some positivity here.

Postby teacher2017 » Sat Sep 16, 2017 1:44 pm

OK surgery set for next Friday. 3-5 hour surgery- 3-5day stay in hospital if everything is ok. Then 3/4 weeks recovery. I'm worried about everything. What if the ctscan was wrong that all looked like it didn't spread? This is laproscopic but of course I'll need staples I'm sure. Then the waiting game starts with pathology. I just want to live longer than these 3-5 year stats. How did you feel after surgery? How did you deal with depression?
50 yo mom of 2 (15, 18)
DX stage 3c - 12/17 LN. T3
8" colon resection 9/22/17
6.1cm tumor
folfox 11/17-4/18
CEA -1.4 11/8/17
Colonoscopy- 5/18-CLEAR!
Cea -1.8 6/18
Cea -2.1. 8/18
8/10/18 Stage 4
1cm met in seg.8 liver
Liver resection-9/18
Cea -1.5/1.2
Port removal-9/19
Cea -1.2 10/19
Cea -1.1 02/2020
Cea - 1.2 5/20
Cea-1.1 9/20
Cea- 1.3 2/21
Cea.1.3 5/21

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

Re: NEW-Need some positivity here.

Postby Aqx99 » Sat Sep 16, 2017 3:32 pm

teacher2017 wrote:OK surgery set for next Friday. 3-5 hour surgery- 3-5day stay in hospital if everything is ok. Then 3/4 weeks recovery. I'm worried about everything. What if the ctscan was wrong that all looked like it didn't spread? This is laproscopic but of course I'll need staples I'm sure. Then the waiting game starts with pathology. I just want to live longer than these 3-5 year stats. How did you feel after surgery? How did you deal with depression?


Mine was done laproscopically and I didn't have staples. Not even for the 4 inch incision on my belly where my surgeon decided to reach in to check my peritoneum after finding some odd cells there. I was glued and taped for all of them. Does your cancer center have a counselor on staff? I started seeing the oncology counselor at my cancer center when I started having some issues. I found out about her through my nurse navigator.
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

teacher2017
Posts: 275
Joined: Sat Sep 09, 2017 1:18 pm
Facebook Username: Lydia Clark

Re: NEW-Need some positivity here.

Postby teacher2017 » Sat Sep 16, 2017 3:33 pm

rp1954 wrote:We found that there was such a thing as "immediate first aid" for colon cancer to drastically improve the situation; even with metastatic stage 4b. I read these articles, mostly in the first 24 hrs: Life Extension Foundation's intro to CRC, cancer surgery, Beyond colonscopy, Preventing surgery induced metastasis. Adding some mild drugs and targeted, extra potent supplements totally changed our situation, inexpensively.

Also we invested in extra blood work that may cost a few hundred dollars extra initially, and that has paid many dividends.


What did you do differently?
50 yo mom of 2 (15, 18)
DX stage 3c - 12/17 LN. T3
8" colon resection 9/22/17
6.1cm tumor
folfox 11/17-4/18
CEA -1.4 11/8/17
Colonoscopy- 5/18-CLEAR!
Cea -1.8 6/18
Cea -2.1. 8/18
8/10/18 Stage 4
1cm met in seg.8 liver
Liver resection-9/18
Cea -1.5/1.2
Port removal-9/19
Cea -1.2 10/19
Cea -1.1 02/2020
Cea - 1.2 5/20
Cea-1.1 9/20
Cea- 1.3 2/21
Cea.1.3 5/21

rp1954
Posts: 1853
Joined: Mon Jun 13, 2011 1:13 am

Re: NEW-Need some positivity here.

Postby rp1954 » Sat Sep 16, 2017 5:10 pm

teacher2017 wrote:What did you do differently?


Didn't screw around. Started an anti-cancer diet and immune building process immediately to prepare for pre-surgery. Cimetidine, lower sugar diet, strong supplements, starting some within the day and adding on asap. It's a big deal, one time opportunity - use-it-or-lose-it.

These actual examples, dealing with lethal peritoneal and liver mets, may be interesting: Norwood, chip, enhanced LEF

Likewise, started adding the bloodwork as fast as I could figure it out.
watchful, active researcher and caregiver for stage IVb/c CC. surgeries 4/10 sigmoid etc & 5/11 para-aortic LN cluster; 8 yrs immuno-Chemo for mCRC; now no chemo
most of 2010 Life Extension recommendations and possibilities + more, some (much) higher, peaking ~2011-12, taper chemo to almost nothing mid 2018, IV C-->2021. Now supplements

teacher2017
Posts: 275
Joined: Sat Sep 09, 2017 1:18 pm
Facebook Username: Lydia Clark

Re: NEW-Need some positivity here.

Postby teacher2017 » Sun Sep 17, 2017 6:40 pm

So depressed tonight. The waiting for surgery is horrific. I need to stop feeling so hopeless. Your stories help. But I still read all the terrible endings. I feel just lost...
50 yo mom of 2 (15, 18)
DX stage 3c - 12/17 LN. T3
8" colon resection 9/22/17
6.1cm tumor
folfox 11/17-4/18
CEA -1.4 11/8/17
Colonoscopy- 5/18-CLEAR!
Cea -1.8 6/18
Cea -2.1. 8/18
8/10/18 Stage 4
1cm met in seg.8 liver
Liver resection-9/18
Cea -1.5/1.2
Port removal-9/19
Cea -1.2 10/19
Cea -1.1 02/2020
Cea - 1.2 5/20
Cea-1.1 9/20
Cea- 1.3 2/21
Cea.1.3 5/21

Lee
Posts: 6207
Joined: Sun Apr 16, 2006 4:09 pm

Re: NEW-Need some positivity here.

Postby Lee » Sun Sep 17, 2017 7:12 pm

teacher2017 wrote:So depressed tonight. The waiting for surgery is horrific. I need to stop feeling so hopeless. Your stories help. But I still read all the terrible endings. I feel just lost...


Very normal, depression, fear are normal reactions to getting a cancer diagnoses, especially early on. If you think it might help, ask your PCP or one of your other Dr.(s) for anti-depression pills, something to carry you through the next few month. Many people on this forum have done that. Have they set a date for your surgery? When you have info, please create a signature line. It's very helpful to know where you are at on this journey and people can give you a more personalized response to your questions.

About a week or two prior to my surgery, I woke from a nightmare where my surgery went wrong. Talk about sitting straight up in bed and sweating from fear. While I knew it was a nightmare, it took a while for me to calm down.

Remember one day at a time, don't forget to breath.

Lee

P.S. If you have not already done so, read this thread. Started in 2009

viewtopic.php?f=1&t=10574
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: NEW-Need some positivity here.

Postby Aqx99 » Sun Sep 17, 2017 7:18 pm

teacher2017 wrote:So depressed tonight. The waiting for surgery is horrific. I need to stop feeling so hopeless. Your stories help. But I still read all the terrible endings. I feel just lost...


I think it would really help if you could see an oncology counselor. Check with your cancer center tomorrow to see if they have one on staff. Mine has helped me immensely. Also, see if there is a local support group you could join. I started going to the one that my cancer center holds the first time they met after my diagnosis. It felt good to be around people just like me. It felt even better to talk with a woman who is a 12 year rectal cancer survivor, who was treated by the same team that would be handling my case.
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


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