NEW-Need some positivity here.

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DonutHead
Posts: 63
Joined: Tue Oct 03, 2017 6:45 pm
Facebook Username: mark

Re: NEW-Need some positivity here.

Postby DonutHead » Sun Oct 15, 2017 6:27 am

Lydia,

that's why you are doing the chemo, to make sure all of the straggler cells possibly left behind are destroyed. this disease is on the microscopic level. clear margins from my understanding means the surgeon did not remove any additional surrounding tissue. still, chemo is the way to go. the onc actually gave me a choice, but advised i do chemo. i am not much of a gambling man and had already made up my mind that no matter what, i would take adjuvent therapy.

so you found it, had surgery to remove it, confirmed no mets, despite lymph node activity, and are preparing to join us in the chemo party. in my humble opinion you are on your way to a cure and recovery. you will get there.

DH
Male 49 yrs.
09/2017: Colonoscopy 2.2x2 cm lesion - Invasive Adenocarcinoma
- CT - slightly enlarged LN; CEA 2.0
- LAP Rectosigmoid - 8' and 25 LNs removed
- Biopsy - 1/25 LN slight molecular invasion
- Stage IIIa - T3 N1 M0
- Chemo: 3 of 8 rds Ox; 8 rds 4000mg Xeloda
10/2017: PET - NED
03/2018: PET/CT - NED
09/2018: Colonoscopy & PET/CT - NED
03/2019: CT - NED
09/2019: Colonoscopy & CT - NED (0.9 CEA)
Still Here!

User avatar
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 » Sun Oct 15, 2017 7:45 am

DonutHead wrote:Lydia,

that's why you are doing the chemo, to make sure all of the straggler cells possibly left behind are destroyed. this disease is on the microscopic level. clear margins from my understanding means the surgeon did not remove any additional surrounding tissue. still, chemo is the way to go. the onc actually gave me a choice, but advised i do chemo. i am not much of a gambling man and had already made up my mind that no matter what, i would take adjuvent therapy.

so you found it, had surgery to remove it, confirmed no mets, despite lymph node activity, and are preparing to join us in the chemo party. in my humble opinion you are on your way to a cure and recovery. you will get there.

DH

Exactly. My oncologist said the same. Even though had clear margins, no spread or lymph node involvement she can not guarantee cancer cells did not
get into the blood stream and chemo is the way to kill them. It can and will be difficult at times but you will get through it and can join all others on this
forum with the same diagnosis as you that are cancer free.
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

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 Oct 15, 2017 3:26 pm

Clear margins means that the surgeon removed healthy tissue on all sides of the tumor. They remove past the tumor, to make sure that they got the entire thing.
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

Lee
Posts: 6029
Joined: Sun Apr 16, 2006 4:09 pm

Re: NEW-Need some positivity here.

Postby Lee » Sun Oct 15, 2017 3:42 pm

teacher2017 wrote:
Lee,
But how do these surgeons know they got enough lymph nodes? Or if they got enough for clear margins? Some people have large clear margins and some are down to mm like mine. I'm just really worried that because so many lymph nodes are involved this will spread. I can't sleep thinking about it.

As for friendships at this time, I have met some very supportive people, people I never thought would be there for me. Then there are those that have marked me for death and don't want to get to close. I'm fine with it, really. I just don't want a pity party in my honor.

Lydia


Hi Lydia,

First thing you need to know,I am not an MD, just a person who has learned a few things along the way.

Regarding lymph nodes, margins, etc I believe a lot depends on the location of the tumor and skill of surgeon. That's why I encourage people to get 2nd and even 3rd opinions. Not all Dr.(s) graduate at the top of the class. If you dealing with rectal cancer, I HIGHLY recommend a board certified colon rectal surgeon doing this surgery because of the advanced training they have had. You've got to have faith in your team of Dr.(s) that they are doing the best they can for you. They are the ones with the medical training to do what they do.

Cancer does not play by the rules, it does it's own thing. That is why cancer is so scary.

When I was diagnosed over 13 yrs ago (also stage IIIC), FOLFOX was experimental and a game changer. When I was diagnosed, my odds of being alive in 5 yrs varied from 30% to 50% depending upon who you talked to. Today there are many more options and your odds are much higher at beating this, I believe around 70% to 80% for stage III folks. And Immune therapy will be the next big game changer. BeansMama, Sleen and DK37 have shown us that, just to name a few. I can see where we are getting closer to a cure for cancer.

In the late 1970's, a friend's dad was diagnosed with rectal cancer. They found it through exploratory surgery (I do not believe they were doing colonoscopies then), 5FU was the only chemo he got, he died 6 months following his diagnoses. Believe me a lot of advancements in cancer treatments have been made in the last 50 years.

The best advice I can give you, give this 110% from the get go. Listen to your Dr.(s) and DO EVERYTHING they ask of you to the best of your ability. Take this one day at a time, one step at a time. And know that this forum as your back. We all get it here what you are going through. It is a place to vent and to learn from those that have already walked in your shoes now.

Know in your heart you will beat this,

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!

Lee
Posts: 6029
Joined: Sun Apr 16, 2006 4:09 pm

Re: NEW-Need some positivity here.

Postby Lee » Sun Oct 15, 2017 3:51 pm

Aqx99 wrote:My husband would be one of those idiots. He was more concerned about himself than he was me. He even had the nerve to literally ask for "brownie points" for coming with me to doctor appointments. It sounds weird, but getting cancer was one of the best things that could have happened to me. It gave me the strength and courage to confront him about his lack of support, and let him walk out the door when he did and not beg him to come back.


Something tells me your DH will come to regret his actions, if he has not already. Cancer has been know to make or break relationships. Getting diagnosed with cancer changes your perspective. It gives you a whole new dimension on what is important and what is helping or holding you back.

And yes, I believe you made the right decision.

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!

teacher2017
Posts: 260
Joined: Sat Sep 09, 2017 1:18 pm
Facebook Username: Lydia Clark

Re: NEW-Need some positivity here.

Postby teacher2017 » Sun Oct 15, 2017 4:32 pm

Lee wrote:
teacher2017 wrote:
Lee,
But how do these surgeons know they got enough lymph nodes? Or if they got enough for clear margins? Some people have large clear margins and some are down to mm like mine. I'm just really worried that because so many lymph nodes are involved this will spread. I can't sleep thinking about it.

As for friendships at this time, I have met some very supportive people, people I never thought would be there for me. Then there are those that have marked me for death and don't want to get to close. I'm fine with it, really. I just don't want a pity party in my honor.

Lydia


Hi Lydia,

First thing you need to know,I am not an MD, just a person who has learned a few things along the way.

Regarding lymph nodes, margins, etc I believe a lot depends on the location of the tumor and skill of surgeon. That's why I encourage people to get 2nd and even 3rd opinions. Not all Dr.(s) graduate at the top of the class. If you dealing with rectal cancer, I HIGHLY recommend a board certified colon rectal surgeon doing this surgery because of the advanced training they have had. You've got to have faith in your team of Dr.(s) that they are doing the best they can for you. They are the ones with the medical training to do what they do.

Cancer does not play by the rules, it does it's own thing. That is why cancer is so scary.

When I was diagnosed over 13 yrs ago (also stage IIIC), FOLFOX was experimental and a game changer. When I was diagnosed, my odds of being alive in 5 yrs varied from 30% to 50% depending upon who you talked to. Today there are many more options and your odds are much higher at beating this, I believe around 70% to 80% for stage III folks. And Immune therapy will be the next big game changer. BeansMama, Sleen and DK37 have shown us that, just to name a few. I can see where we are getting closer to a cure for cancer.

In the late 1970's, a friend's dad was diagnosed with rectal cancer. They found it through exploratory surgery (I do not believe they were doing colonoscopies then), 5FU was the only chemo he got, he died 6 months following his diagnoses. Believe me a lot of advancements in cancer treatments have been made in the last 50 years.

The best advice I can give you, give this 110% from the get go. Listen to your Dr.(s) and DO EVERYTHING they ask of you to the best of your ability. Take this one day at a time, one step at a time. And know that this forum as your back. We all get it here what you are going through. It is a place to vent and to learn from those that have already walked in your shoes now.

Know in your heart you will beat this,

Lee


Lee-
Thank you for your advice and insight. It is greatly appreciated. I just wonder about all these stats and they always sound so bad. So I think I'll stop listening to them. I had a colon cancer mass removed from my left side sigmoid colon. Resection with no ostomy. Everyone calls it lucky. I don't see any cancer as lucky. One min I read how some stage3c are 9yrs NED and others have a reoccurrence immediately. I will feel somewhat in the game when the port goes in and the chemo starts. Right now I'm a sitting duck. I hate this feeling.
Lydia
50 yo mom of 2 (14, 17)
DX stage 3c - 12/17 LN. T3
8" colon resection 9/22/17
6.1cm tumor
folfox 11/8/17-4/18
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 level- 1.5 10/18
Cea level- 1.2 12/18
Clear scan- 12/5/18
Cea level- 1.1 3/19
Clear scan- 3/19
Cea level- 1.2 6/19
Clear scan- 6/2/19
Colonoscopy - 7/19 CLEAR
Cea level- 1.5 8/19
Clear scan - 8/19
Port removal- 9/19
Cea level- 1.2 10/19

Lee
Posts: 6029
Joined: Sun Apr 16, 2006 4:09 pm

Re: NEW-Need some positivity here.

Postby Lee » Sun Oct 15, 2017 5:31 pm

teacher2017 wrote:Lee-
Thank you for your advice and insight. It is greatly appreciated. I just wonder about all these stats and they always sound so bad. So I think I'll stop listening to them. I had a colon cancer mass removed from my left side sigmoid colon. Resection with no ostomy. Everyone calls it lucky. I don't see any cancer as lucky. One min I read how some stage3c are 9yrs NED and others have a reoccurrence immediately. I will feel somewhat in the game when the port goes in and the chemo starts. Right now I'm a sitting duck. I hate this feeling.
Lydia


If you like to look up Dr. Google, know that most of the info out there is at least 5 yrs and sometimes 10yrs old. Very much out of date.

The testing they do on tumors today is also a big game changer. It help determine if certain chemos will work or not before putting a patient through unnecessary chemo regiments. Not to long ago, it was hit and miss game. If this chemo does not work, let try this other chemo.

One thing about stats, it tends to include a general population. Yes some people are younger, butt most people dealing with this disease are older, a lot older. In some cases advanced age old. Many of these older people die from old age long before cancer can kill them. Some people chose to do nothing (denial). You've got to remember you are being included in that type of population. I have found those people who are actively involved in there cancer treatments (like you) tend to have far better odds then those who chose not to be involved.

I understand your fear. Butt know that modern medicine is improving faster and faster. There was no such thing as a PET scan when I was diagnosed. MRI are more precise today then they were a decade ago. I had radiation (rectal cancer) when I was diagnosed, it did a lot of damage, thus the reason I have a permanent colostomy today. Today's radiation is far more better targeting with less damage.

When do you get your port installed? When do you start chemo?

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!

teacher2017
Posts: 260
Joined: Sat Sep 09, 2017 1:18 pm
Facebook Username: Lydia Clark

Re: NEW-Need some positivity here.

Postby teacher2017 » Sun Oct 15, 2017 5:51 pm

Lee-
I go to the oncologist on the 25th for bloodwork. I'm sure she will give me a date for the port. I'm sure chemo will be close to that date. I still have this cough and I don't think these steroids or antibiotics are working quick enough for me. She won't touch me if I'm still coughing. I return to work tomorrow and keeping germ free will be an issue. So strange- I actually feel better "belly wise" than I have since May. That resection was a blessing in the strangest way. I feel relatively well if it weren't for this cough. I'll keep you posted.
Lydia
50 yo mom of 2 (14, 17)
DX stage 3c - 12/17 LN. T3
8" colon resection 9/22/17
6.1cm tumor
folfox 11/8/17-4/18
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 level- 1.5 10/18
Cea level- 1.2 12/18
Clear scan- 12/5/18
Cea level- 1.1 3/19
Clear scan- 3/19
Cea level- 1.2 6/19
Clear scan- 6/2/19
Colonoscopy - 7/19 CLEAR
Cea level- 1.5 8/19
Clear scan - 8/19
Port removal- 9/19
Cea level- 1.2 10/19

Lee
Posts: 6029
Joined: Sun Apr 16, 2006 4:09 pm

Re: NEW-Need some positivity here.

Postby Lee » Sun Oct 15, 2017 6:04 pm

If it were me, I would be calling the Onc tomorrow and see if you can get appt or explain to nurse what is going on. Explain you have this cough, your PCP gave you steroids and antibiotics, butt they are not working. You are VERY concerned this cough could hold up starting chemo. What does the Onc recommend.

Good luck,

Lee

P.S. When you find out what your cough is, would you please let me know. I had lunch with a friend yesterday, she too has a cough. She holding off on seeing a Dr. Me, I would have gone right away, her cough sounds nasty.
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!

Lee
Posts: 6029
Joined: Sun Apr 16, 2006 4:09 pm

Re: NEW-Need some positivity here.

Postby Lee » Sun Oct 15, 2017 7:15 pm

teacher2017 wrote:It's been three weeks and I can not even bring myself to reading my pathology report. I'm sure when I get that port put in, I won't even be able to look at it.


I never did read my pathology report. I was very afraid of it giving me a poor prognosis. Decided I wanted to be ignorant on that front. Please understand this forum was not around when I was traveling this journey, I really kind of did this blind. My Onc realized early on, give me general info, butt I was lost with the details. I would ask questions if I needed more info. Early on I told Onc and surgeon, I would follow their orders to the best of my ability, just get me through this. I believe they both succeed.

Your not alone on that pathology report front.

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!

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 Oct 15, 2017 7:27 pm

Lee wrote:
teacher2017 wrote:It's been three weeks and I can not even bring myself to reading my pathology report. I'm sure when I get that port put in, I won't even be able to look at it.


I never did read my pathology report. I was very afraid of it giving me a poor prognosis. Decided I wanted to be ignorant on that front. Please understand this forum was not around when I was traveling this journey, I really kind of did this blind. My Onc realized early on, give me general info, butt I was lost with the details. I would ask questions if I needed more info. Early on I told Onc and surgeon, I would follow their orders to the best of my ability, just get me through this. I believe they both succeed.

Your not alone on that pathology report front.

Lee


My pathology report did not contain any information on prognosis. It was just the clinical information on what was removed, the margins and the results on the analysis of my tumor, my ovaries and the spot on my peritoneum.
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

DonutHead
Posts: 63
Joined: Tue Oct 03, 2017 6:45 pm
Facebook Username: mark

Re: NEW-Need some positivity here.

Postby DonutHead » Sun Oct 15, 2017 7:44 pm

sometimes the steroid can cause a cough along with several other negative reactions. i agree with Lee that you need to re-engage your oncologist regarding the cough. i am managing my fifth day of chemo so far, mostly nausea and fatigue. today i felt like i was hit by a train, but it cleared about three hours after my mirning dose of xeloda and a dose of zofran. it’s literally an up and down feeling all day.

as for the steroid, they gave me decodran prior to my infusion of oxaliplatain and it caused a burning sensation to the left of my port and slight pressure in my chest. it receded when they flushed me and started the zofran drip and got better as the session wore on. we all respond differently to different substances.

stay on your doctors and get that port in so you can start chemo. i absolutely hate having this thing in my chest, but know it will save my life and is becoming a part of me day by day...

DH (not the other kind!) :)
Male 49 yrs.
09/2017: Colonoscopy 2.2x2 cm lesion - Invasive Adenocarcinoma
- CT - slightly enlarged LN; CEA 2.0
- LAP Rectosigmoid - 8' and 25 LNs removed
- Biopsy - 1/25 LN slight molecular invasion
- Stage IIIa - T3 N1 M0
- Chemo: 3 of 8 rds Ox; 8 rds 4000mg Xeloda
10/2017: PET - NED
03/2018: PET/CT - NED
09/2018: Colonoscopy & PET/CT - NED
03/2019: CT - NED
09/2019: Colonoscopy & CT - NED (0.9 CEA)
Still Here!

User avatar
O Stoma Mia
Posts: 1600
Joined: Sat Jun 22, 2013 6:29 am

Re: Pathology report

Postby O Stoma Mia » Sun Oct 15, 2017 11:31 pm

teacher2017 wrote:It's been three weeks and I can not even bring myself to reading my pathology report. I'm sure when I get that port put in, I won't even be able to look at it.

If you ever want to go through your pathology report, I would recommend reading the following document. It contains a good explanation of most of the technical terms that show up in path reports.

Colorectal Cancer Structured Reporting Protocol
https://www.rcpa.edu.au/Library/Practising-Pathology/Structured-Pathology-Reporting-of-Cancer/Cancer-Protocols/Gastrointestinal/Protocol-colorectal-cancer

teacher2017
Posts: 260
Joined: Sat Sep 09, 2017 1:18 pm
Facebook Username: Lydia Clark

Re: NEW-Need some positivity here.

Postby teacher2017 » Mon Oct 16, 2017 1:27 pm

Went to work today. Kids were happy to see me. Staff was very very supportive. I am tired since it's the first day back from the resection. It was so normal. I loved it. I will never complain about work again. Happy to have this job. I hope I can work through chemo and win this war.
50 yo mom of 2 (14, 17)
DX stage 3c - 12/17 LN. T3
8" colon resection 9/22/17
6.1cm tumor
folfox 11/8/17-4/18
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 level- 1.5 10/18
Cea level- 1.2 12/18
Clear scan- 12/5/18
Cea level- 1.1 3/19
Clear scan- 3/19
Cea level- 1.2 6/19
Clear scan- 6/2/19
Colonoscopy - 7/19 CLEAR
Cea level- 1.5 8/19
Clear scan - 8/19
Port removal- 9/19
Cea level- 1.2 10/19

User avatar
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 » Mon Oct 16, 2017 1:40 pm

I'm glad you had a good day.
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


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