Newly diagnosed rectal cancer

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MeAndMine
Posts: 147
Joined: Mon Aug 05, 2019 2:40 pm

Re: Newly diagnosed rectal cancer

Postby MeAndMine » Tue Sep 03, 2019 7:56 am

You might look at your hospital online portal to see if you can get the pathology report there.


The hospital still has "pending" beside the MRI and the report. I'm not sure why. Maybe the doctor has to release it so it'll show up later. The doctor's site itself only has lab results from last month which are the last ones he ran. He just didn't sound very encouraging.
F 56 non-smoker
8/5/2019 - Colonoscopy - 4-5 cm rectal mass, 2-3 cm proximal to anal verge and 6mm polyp
8/13/2019 - CT - No mets
8/19/2019 - Rectum: Adenocarcinoma arising from tubulovillous adenoma. Descending colon: tubular adenoma
8/23/2019 First visit with surgeon
8/26/2019 First visit with oncologist
8/26/2019 MRI
CEA 8/19/19=3.9, 8/26/19=7.1
9/6/2019 - T3N2a
9/11/2019 - Radiation begins - 5.5 weeks along with oral capecitabine

NHMike
Posts: 2324
Joined: Fri Jul 21, 2017 3:43 am

Re: Newly diagnosed rectal cancer

Postby NHMike » Tue Sep 03, 2019 8:03 am

MeAndMine wrote:
You might look at your hospital online portal to see if you can get the pathology report there.


The hospital still has "pending" beside the MRI and the report. I'm not sure why. Maybe the doctor has to release it so it'll show up later. The doctor's site itself only has lab results from last month which are the last ones he ran. He just didn't sound very encouraging.


I found that some reports and tests are embargoed until the doctor releases them. I guess that they want the chance to go over them with you. The average person has a hard time reading these reports and sometimes doctors don't want patients to freak out over the reports. Both my GI doctor and Oncologist said that I would get through this. It would not be easy but they were both encouraging.

Here is a link to staging information:

https://www.cancer.org/cancer/colon-rec ... taged.html
6/17: ER rectal bleeding; Colonoscopy
7/17: 3B rectal. T3N1bM0. 5.2 4.5 4.3 cm. Lymphs: 6 x 4 mm, 8 x 6, 5 x 5
7/17-9/17: Xeloda radiation
7/5: CEA 2.7; 8/16: 1.9; 11/30: 0.6; 12/20 1.4; 1/10 1.8; 1/31 2.2; 2/28 2.6; 4/10 2.8; 5/1 2.8; 5/29 3.2; 7/13 4.5; 8/9 2.8, 2/12 1.2
MSS, KRAS G12D
10/17: 2.7 2.2 1.6 cm (-90%). Lymphs: 3 x 3 mm (-62.5%), 4 x 3 (-75%), 5 x 3 (-40%). 5.1 CM from AV
10/17: LAR, Temp Ileostomy, Path Complete Response
CapeOx (8) 12/17-6/18
7/18: Reversal, Port Removal
2/19: Clean CT

Rock_Robster
Posts: 381
Joined: Thu Oct 25, 2018 5:27 am
Location: Melbourne, Australia

Re: Newly diagnosed rectal cancer

Postby Rock_Robster » Tue Sep 03, 2019 8:12 am

MeAndMine wrote:
You might look at your hospital online portal to see if you can get the pathology report there.


The hospital still has "pending" beside the MRI and the report. I'm not sure why. Maybe the doctor has to release it so it'll show up later. The doctor's site itself only has lab results from last month which are the last ones he ran. He just didn't sound very encouraging.

This is a massive generalisation and might not be very helpful, but i’ll add it anyway. I’ve found that as a group, oncologists tend to be pretty stoic. They go through so much bad news, and sometimes good news, in any given day that I think many develop something of a flat demeanour. They’re not going to gush with positivity, but likewise won’t (or shouldn’t) fall apart when things get tough. I’ve learnt I can’t read too much into my onc’s moods, because he’s unlikely to give much away. Indeed after my liver surgery I saw him genuinely smile for the first time, and I knew I was doing well.

In the meantime, all the best hopes for good results.

Cheers
Rob
Male 37; Melbourne, Australia
10/2018 Dx 3.5cm RC adenocarcinoma, 12cm from AV
Mod diff, EMVI+ LVI+ PNI-
3 LN; 4 liver mets, resectable
pT3pN1aM1a; Stage IVa. MSS, NRAS (G13R)
CEA: Oct-18= 12; Nov-18= 14, Mar-19= 2.4, Aug-19 <2.0
11/18 - FOLFOX x 6
3/19 - Liver resection
4-5/19 - 25 x pelvic radiation; complete met. response, TRG 3
07/19 - ULAR (robot), temp ileo, 1/27 LN
08/19 - Missed liver spot
08-11/19 - FOLFOX x 1, FOLFOXIRI x 1, FOLFIRI x 5
12/19 - Planned liver resection #2 & stoma reversal

MeAndMine
Posts: 147
Joined: Mon Aug 05, 2019 2:40 pm

Re: Newly diagnosed rectal cancer

Postby MeAndMine » Tue Sep 03, 2019 9:56 am

Looks like my oral chemo will be pills through mail order. The doctor said he prescribed Xeloda, the pharmacy that called said they are still working on it but it's the generic version. Have any of you read about or noticed any difference in using one or the other? She said they could ask the doctor to switch it to Xeloda. I notice on my insurance website, Xeloda is over $9,600 where the generic is $1,600.
F 56 non-smoker
8/5/2019 - Colonoscopy - 4-5 cm rectal mass, 2-3 cm proximal to anal verge and 6mm polyp
8/13/2019 - CT - No mets
8/19/2019 - Rectum: Adenocarcinoma arising from tubulovillous adenoma. Descending colon: tubular adenoma
8/23/2019 First visit with surgeon
8/26/2019 First visit with oncologist
8/26/2019 MRI
CEA 8/19/19=3.9, 8/26/19=7.1
9/6/2019 - T3N2a
9/11/2019 - Radiation begins - 5.5 weeks along with oral capecitabine

NHMike
Posts: 2324
Joined: Fri Jul 21, 2017 3:43 am

Re: Newly diagnosed rectal cancer

Postby NHMike » Tue Sep 03, 2019 10:05 am

MeAndMine wrote:Looks like my oral chemo will be pills through mail order. The doctor said he prescribed Xeloda, the pharmacy that called said they are still working on it but it's the generic version. Have any of you read about or noticed any difference in using one or the other? She said they could ask the doctor to switch it to Xeloda. I notice on my insurance website, Xeloda is over $9,600 where the generic is $1,600.


My doctor ordered Xeloda but there was one time when they screwed things up enough so that I had to get the generic. I didn't notice any difference. I actually would have preferred that the doctor ordered the generic but I wasn't going to tell him what to do. I would rather save our insurance plan money when I can.

Your insurance company should negotiate prices with providers so they may have a negotiated lower rate. I think that the bills for my care ran about $500K but the insurance paid about $300K. One eye-popping thing was the first Oxaliplatin infusion - billed at $11,000, negotiated price was $1,000.

That said, I've heard some people (not cancer patients) say that generics affect them differently. I don't see why this should happen as they should have the same active ingredients - but it's something that I've heard. If you are in any doubt, go with the name brand.

Also, watch your mail-order pharmacy like a hawk. For Neo-Adjuvant, I had to order two times because there's a maximum number of pills that they will give out in an order. So I only had to go through the pain of dealing with them twice. But both times, it was very touch and go whether or not they would get here in time. For Adjuvant, I had to order every cycle - that was 8 cycles and a lot of time on the phone.
6/17: ER rectal bleeding; Colonoscopy
7/17: 3B rectal. T3N1bM0. 5.2 4.5 4.3 cm. Lymphs: 6 x 4 mm, 8 x 6, 5 x 5
7/17-9/17: Xeloda radiation
7/5: CEA 2.7; 8/16: 1.9; 11/30: 0.6; 12/20 1.4; 1/10 1.8; 1/31 2.2; 2/28 2.6; 4/10 2.8; 5/1 2.8; 5/29 3.2; 7/13 4.5; 8/9 2.8, 2/12 1.2
MSS, KRAS G12D
10/17: 2.7 2.2 1.6 cm (-90%). Lymphs: 3 x 3 mm (-62.5%), 4 x 3 (-75%), 5 x 3 (-40%). 5.1 CM from AV
10/17: LAR, Temp Ileostomy, Path Complete Response
CapeOx (8) 12/17-6/18
7/18: Reversal, Port Removal
2/19: Clean CT

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Jacques
Posts: 536
Joined: Sun Dec 28, 2014 10:38 am
Location: Occitanie

Re: Newly diagnosed rectal cancer

Postby Jacques » Tue Sep 03, 2019 10:13 am

Here is some information on CRC pathology reporting standards, in case you need to look up some details.

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

User avatar
Jacques
Posts: 536
Joined: Sun Dec 28, 2014 10:38 am
Location: Occitanie

Re: Newly diagnosed rectal cancer

Postby Jacques » Wed Sep 04, 2019 10:28 pm

MeAndMine wrote:The GI doctor just called to tell me that the MRI shows tumor has passed through the muscle and into lymph nodes. He didn't say much more than that other than he will let the oncologist and surgeon tell me what is next and he will pray for me.

As said by others, it would help to know exactly which muscle the GI doctor was referring to.

Could it be the "muscularis propia" by any chance? If so, these are the circular and longitudinal muscle layers inside the intestine wall.

https://upload.wikimedia.org/wikipedia/commons/8/80/Gut_wall.svg

This muscle layer is mentioned in the usual definition of T3 tumors
    T3: The tumor has grown through the muscularis propria and into the subserosa, which is a thin layer of connective tissue beneath the outer layer of some parts of the large intestine, or it has grown into tissues surrounding the colon or rectum.

On the other hand, if he is talking about a different kind of muscle, such as the nearby sphincter muscle or the levator ani muscle, then this is a very different matter, since these other muscles are outside the rectum wall.

If you get a chance, could you ask the GI doctor what he meant by "muscle". Or can you find the exact expression itself in your recent rectal MRI report?

MeAndMine
Posts: 147
Joined: Mon Aug 05, 2019 2:40 pm

Re: Newly diagnosed rectal cancer

Postby MeAndMine » Thu Sep 05, 2019 5:47 am

If you get a chance, could you ask the GI doctor what he meant by "muscle". Or can you find the exact expression itself in your recent rectal MRI report?


I still don't have the MRI report. It just says "pending" on the hospital site. I see the radiation oncologist today and surgeon tomorrow. They should have more answers for me.

I'm feeling overwhelmed. Not sleeping, hurting and all around down. I need to be stronger for all of this but right now I'm...not.
F 56 non-smoker
8/5/2019 - Colonoscopy - 4-5 cm rectal mass, 2-3 cm proximal to anal verge and 6mm polyp
8/13/2019 - CT - No mets
8/19/2019 - Rectum: Adenocarcinoma arising from tubulovillous adenoma. Descending colon: tubular adenoma
8/23/2019 First visit with surgeon
8/26/2019 First visit with oncologist
8/26/2019 MRI
CEA 8/19/19=3.9, 8/26/19=7.1
9/6/2019 - T3N2a
9/11/2019 - Radiation begins - 5.5 weeks along with oral capecitabine

Rock_Robster
Posts: 381
Joined: Thu Oct 25, 2018 5:27 am
Location: Melbourne, Australia

Re: Newly diagnosed rectal cancer

Postby Rock_Robster » Thu Sep 05, 2019 6:04 am

MeAndMine wrote:
I'm feeling overwhelmed. Not sleeping, hurting and all around down. I need to be stronger for all of this but right now I'm...not.

Sometimes you have to fight, sometimes you have to rest. It swings like a tide, and can change from day to day, even hour to hour. Modern medicine gives us lots of weapons to fight with, but not much to hide behind. This is a long journey and cannot be done as a sprint. Make sure you’re giving yourself permission to rest right now if that’s what you need.

Over time perhaps you can also see if you can find some things that help restore your energy. Happy to share ideas there. Good luck.
Male 37; Melbourne, Australia
10/2018 Dx 3.5cm RC adenocarcinoma, 12cm from AV
Mod diff, EMVI+ LVI+ PNI-
3 LN; 4 liver mets, resectable
pT3pN1aM1a; Stage IVa. MSS, NRAS (G13R)
CEA: Oct-18= 12; Nov-18= 14, Mar-19= 2.4, Aug-19 <2.0
11/18 - FOLFOX x 6
3/19 - Liver resection
4-5/19 - 25 x pelvic radiation; complete met. response, TRG 3
07/19 - ULAR (robot), temp ileo, 1/27 LN
08/19 - Missed liver spot
08-11/19 - FOLFOX x 1, FOLFOXIRI x 1, FOLFIRI x 5
12/19 - Planned liver resection #2 & stoma reversal

User avatar
Jacques
Posts: 536
Joined: Sun Dec 28, 2014 10:38 am
Location: Occitanie

Re: Newly diagnosed rectal cancer

Postby Jacques » Thu Sep 05, 2019 8:26 am

MeAndMine wrote:... I see the radiation oncologist today and surgeon tomorrow. They should have more answers for me...

When you see the radiation oncologist, could you ask what exactly will be irradiated? The primary tumor only? The primary tumor + adjacent lymph nodes? Anything else in the radiation field? Any organs that will be blocked from radiation?

Also could you ask which brand/model of machine will be used, and how many days of radiation will be involved??

Thank you.

MeAndMine
Posts: 147
Joined: Mon Aug 05, 2019 2:40 pm

Re: Newly diagnosed rectal cancer

Postby MeAndMine » Thu Sep 05, 2019 6:53 pm

I appreciate the support from all of you more than you could know.

The radiation oncologist didn’t have my MRI. He had a note from the GI. I should see the surgeon tomorrow. He will be more involved and be able to discuss it. I hope I still have the appointment. His nurse called this morning, only saying to call her back. I did within the hour but she was unavailable and didn’t return my call. Not sure what that was about. They were closed by the time I came out of my other appointments.

The radiation oncologist said they will do radiation on the tumor and the lymph nodes in the area. He said to have a full bladder to keep it up and out of the way and I’ll be laying on my stomach to make the small bowel move out of the way.

The machine is a photon linear accelerator 3-D.

Radiation will be for five and 1/2 weeks with the first 5 weeks radiation on the broader area and the last three days stronger direct radiation of the rectum.

They did the CT and preliminary marks today with stickers and will do the finalization next week and start treatment on Wednesday.

I met with the nutritionist. I lost 6 more pounds and they told me to stop doing that. It was a long day and I seem to have conflicting info on what to eat but basically low residue. They recommend dairy whereas the oncologist said to stay away from it. They want me to eat 2200 calories and focus on protein. I hope I can eat more. I can’t eat when I’m anxious. When I spent the weekend with my daughter, I ate so much but felt so bloated and not good. I’m not sure how to balance it all but I have to do better.

The counselor called from the pharmacy to talk about the chemo. He said to cut my fingernails short and wear close toed shoes even at home. Don’t use hot water and wear gloves when doing tasks like dishes or working around the house. Lots of info. I’m worried about mouth sores since I already chew my lip or jaw when nervous without realizing it. And for some reason today my gums on the upper right were bleeding when I flossed. I hope that fixes before next week.

I’m overthinking again. Thanks for letting me ramble. I’m glad to get things moving. Scared but glad.
F 56 non-smoker
8/5/2019 - Colonoscopy - 4-5 cm rectal mass, 2-3 cm proximal to anal verge and 6mm polyp
8/13/2019 - CT - No mets
8/19/2019 - Rectum: Adenocarcinoma arising from tubulovillous adenoma. Descending colon: tubular adenoma
8/23/2019 First visit with surgeon
8/26/2019 First visit with oncologist
8/26/2019 MRI
CEA 8/19/19=3.9, 8/26/19=7.1
9/6/2019 - T3N2a
9/11/2019 - Radiation begins - 5.5 weeks along with oral capecitabine

MeAndMine
Posts: 147
Joined: Mon Aug 05, 2019 2:40 pm

Re: Newly diagnosed rectal cancer

Postby MeAndMine » Fri Sep 06, 2019 3:46 pm

Could it be the "muscularis propia" by any chance? If so, these are the circular and longitudinal muscle layers inside the intestine wall.


I saw the surgeon today & he went over the MRI with me. You were right with that muscle. The GI just said "It's through the muscle" and didn't go into detail on the phone but the surgeon gave me the report--it never has shown up online. Somehow they are mixed up because they had me down for an MRI on two different days. Even though the GI doctor called me with the results, when the surgeon wanted to get the report, his office said that I never showed up for the MRI. Luckily I had all of my paperwork & they got it directly from the hospital.

The report says:
Impression
1-Right sided low rectal tumor extending to the level of the puborectalis muscle with minimal extension beyond the muscularis propria into the intersphincteric plane at the right posterior margin of the low rectum.
2-A few small right-sided mesorectal lymph nodes (the largest measuring 5 x 5 mm)

T-stage T3
N stage N2a

It doesn't mention the M stage but I think that is zero since they don't see anything outside of the area. Then again, maybe they only do that after actual surgery & biopsy.

My doctor ordered Xeloda but there was one time when they screwed things up enough so that I had to get the generic.


I did receive the medicine in the mail yesterday and it is the generic version. They asked when I was going to start taking it when they called before my appointment yesterday and wrote it down as beginning on Monday. I found out later I will begin on Wednesday so maybe that will buy me two extra days of time for the wait. They said they would call me when it was close to time but thanks to you, I will know to stay on top of it better. It had to be scary to know you need it and be waiting on it!
F 56 non-smoker
8/5/2019 - Colonoscopy - 4-5 cm rectal mass, 2-3 cm proximal to anal verge and 6mm polyp
8/13/2019 - CT - No mets
8/19/2019 - Rectum: Adenocarcinoma arising from tubulovillous adenoma. Descending colon: tubular adenoma
8/23/2019 First visit with surgeon
8/26/2019 First visit with oncologist
8/26/2019 MRI
CEA 8/19/19=3.9, 8/26/19=7.1
9/6/2019 - T3N2a
9/11/2019 - Radiation begins - 5.5 weeks along with oral capecitabine

NHMike
Posts: 2324
Joined: Fri Jul 21, 2017 3:43 am

Re: Newly diagnosed rectal cancer

Postby NHMike » Fri Sep 06, 2019 4:05 pm

MeAndMine wrote:
Could it be the "muscularis propia" by any chance? If so, these are the circular and longitudinal muscle layers inside the intestine wall.


I saw the surgeon today & he went over the MRI with me. You were right with that muscle. The GI just said "It's through the muscle" and didn't go into detail on the phone but the surgeon gave me the report--it never has shown up online. Somehow they are mixed up because they had me down for an MRI on two different days. Even though the GI doctor called me with the results, when the surgeon wanted to get the report, his office said that I never showed up for the MRI. Luckily I had all of my paperwork & they got it directly from the hospital.

The report says:
Impression
1-Right sided low rectal tumor extending to the level of the puborectalis muscle with minimal extension beyond the muscularis propria into the intersphincteric plane at the right posterior margin of the low rectum.
2-A few small right-sided mesorectal lymph nodes (the largest measuring 5 x 5 mm)

T-stage T3
N stage N2a

It doesn't mention the M stage but I think that is zero since they don't see anything outside of the area. Then again, maybe they only do that after actual surgery & biopsy.

My doctor ordered Xeloda but there was one time when they screwed things up enough so that I had to get the generic.


I did receive the medicine in the mail yesterday and it is the generic version. They asked when I was going to start taking it when they called before my appointment yesterday and wrote it down as beginning on Monday. I found out later I will begin on Wednesday so maybe that will buy me two extra days of time for the wait. They said they would call me when it was close to time but thanks to you, I will know to stay on top of it better. It had to be scary to know you need it and be waiting on it!


T3 N2A is Stage IIIB at my staging website so same stage as me and many others here.

Sometimes the mail-order pharmacy said that they would put the order in at night and it would go by overnight courier and get there the next day. Of course mine was in the winter where flights get cancelled due to storms so that was another consideration for me. If the weather is very hot, then they will pack it with ice packs in styrofoam. I recommend saving the ice packs, they're good for trips to the beach where you want to keep food or drinks cold. Those ice packs are really great. The styrofoam might be useful too - they make good Yoga blocks.

Be sure to be available to pick up your pills. I had them delivered to the office where everything has a chain of custody with signatures. Those packages are hundreds to thousands of dollars. I personally don't think that anyone would knowingly want to take Xeloda though.

BTW, there is one major benefit to Xeloda - mosquitoes will steer clear of you.
6/17: ER rectal bleeding; Colonoscopy
7/17: 3B rectal. T3N1bM0. 5.2 4.5 4.3 cm. Lymphs: 6 x 4 mm, 8 x 6, 5 x 5
7/17-9/17: Xeloda radiation
7/5: CEA 2.7; 8/16: 1.9; 11/30: 0.6; 12/20 1.4; 1/10 1.8; 1/31 2.2; 2/28 2.6; 4/10 2.8; 5/1 2.8; 5/29 3.2; 7/13 4.5; 8/9 2.8, 2/12 1.2
MSS, KRAS G12D
10/17: 2.7 2.2 1.6 cm (-90%). Lymphs: 3 x 3 mm (-62.5%), 4 x 3 (-75%), 5 x 3 (-40%). 5.1 CM from AV
10/17: LAR, Temp Ileostomy, Path Complete Response
CapeOx (8) 12/17-6/18
7/18: Reversal, Port Removal
2/19: Clean CT

MeAndMine
Posts: 147
Joined: Mon Aug 05, 2019 2:40 pm

Re: Newly diagnosed rectal cancer

Postby MeAndMine » Fri Sep 06, 2019 4:17 pm

BTW, there is one major benefit to Xeloda - mosquitoes will steer clear of you.


Ha! I love that. :D
F 56 non-smoker
8/5/2019 - Colonoscopy - 4-5 cm rectal mass, 2-3 cm proximal to anal verge and 6mm polyp
8/13/2019 - CT - No mets
8/19/2019 - Rectum: Adenocarcinoma arising from tubulovillous adenoma. Descending colon: tubular adenoma
8/23/2019 First visit with surgeon
8/26/2019 First visit with oncologist
8/26/2019 MRI
CEA 8/19/19=3.9, 8/26/19=7.1
9/6/2019 - T3N2a
9/11/2019 - Radiation begins - 5.5 weeks along with oral capecitabine

Punky44
Posts: 384
Joined: Mon Oct 01, 2018 4:29 pm

Re: Newly diagnosed rectal cancer

Postby Punky44 » Sat Sep 07, 2019 12:03 am

My mom was also staged at T3N2M0.

Doesn’t it feel empowering to have a stage and know how you’re going to attack it? I remember it did for me with my mom.

Best of luck with your treatment!
Caregiver to my amazing mom (68)
10/1/18 DX with rectal cancer; CEA 17 at diagnosis
T3N2M0
Total neoadjuvant therapy:
8 rounds Folfox 11/5/18 - 2/11/19
Short course radiation 3/14/19 - 3/20/19
Robotically assisted laparoscopic LAR 3/21/19
Pathology report says yT2N0M0 with 0/38 nodes
CEA 4/23: 2.1; 7/24: 1.9; 10/22: 2.6
6/28/19 Reversal and port out
10/22 — nodules on lungs—possible infection or mets—PET scheduled for 11/25

Me: 34, first colonoscopy 11/16/18—normal! Come back in 5 years.


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