New member - scared & looking for tips

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Malidosa
Posts: 35
Joined: Sun Dec 29, 2019 11:15 pm

Re: New member - scared & looking for tips

Postby Malidosa » Mon Jan 06, 2020 8:09 pm

Hi all thank you for the encouraging words. It helps please keep them coming when you can.

I’ve been scheduled for surgery 1/16. Which helped calm some of the out of control feelings as my surgeon really seemed to know her “shit”. Pun intended

But also had brought on some down moments. Having to plan for time of work and doing paperwork has really sort of made things sink in even more that this is all happening.

To make matters worse because of my age they told my brother and sister should get checked out as well and whelp turns out they found something in my brother as well two spots actually. So emotions are running wild.

I do have a question. I know everyone talks about CEA levels I’m not sure what it really means. Mine came back as 0.5 which still not sure what that means for me.

Also I’m getting the robotic surgery, any tips for what to bring for the hospital stay or what to prepare for?
Dx - Cecum mass - age 35
Stage 1 (T2, N0, M0) - CEA level - 0.5
26 nodes negative
Right Colectomy 1/16/20
Currently investigating a 3.2 cm adrenal mass

Punky44
Posts: 446
Joined: Mon Oct 01, 2018 4:29 pm

Re: New member - scared & looking for tips

Postby Punky44 » Mon Jan 06, 2020 8:21 pm

Glad you have a date for your surgery!

I know it is scary that it can run in families and that they found something in your brother but just think—it’s a good thing it was found so if it does end up being anything cancer related he too can get treatment.

CEA can be a good indicator in some patients about if cancer is present, has returned, etc but in others it is not a good indicator—with yours being .5, you likely are in the latter group.
Caregiver to my amazing mom (68 at dx)
10/1/18 DX with rectal cancer; CEA 17
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
6/28/19 Reversal and port out
CEA 2.1; 1.9; 2.6; 2.8; 2.3; 2.4
Latest update: 6/20–Clear CT; 9/22—CEA 2.4

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

Malidosa
Posts: 35
Joined: Sun Dec 29, 2019 11:15 pm

Re: New member - scared & looking for tips

Postby Malidosa » Tue Jan 07, 2020 4:20 pm

Question. Does anyone know which is better an MRI or CT scan for screenings? I've heard mixed things. I only had a CT scan but have been unable to get an MRI cause when they biopsied they put in hemoclips to stop bleeding. Sort of feeling a little apprehensive about not having an MRI done. Also does anyone have experience with having had hemoclips? I was told they should fall out in like 9 days but in the mean time no radiology center will do the MRI. Just not sure when is considered a safe time to get an MRI, like what if they aren't out in the normal "9 days"?
Dx - Cecum mass - age 35
Stage 1 (T2, N0, M0) - CEA level - 0.5
26 nodes negative
Right Colectomy 1/16/20
Currently investigating a 3.2 cm adrenal mass

Vana3
Posts: 42
Joined: Tue Aug 13, 2019 11:40 am
Facebook Username: ma

Re: New member - scared & looking for tips

Postby Vana3 » Tue Jan 07, 2020 10:15 pm

Hi! I think this is a good question to be asking. I had a single CT scan that did not show a spot on my liver before my surgery. There was no MRI or PET scan done until 8 weeks after my colon resection. We then switched to a great specialist at Dana Farber who immediately ordered those two tests. My insurance covered it without question. I would not worry about the 9 days but I do wonder if my treatment might have been different with those additional scans and info.
I think you are doing a great job of questioning what’s best for you! Remember to breathe and trust your heart as you work thru these difficult decisions. Dana Farber set me up with a great app called headspace it has become such a good tool when I am facing intense moments with all of this.
Sending you good thoughts...
Dx 36 yr, F, 7/19
T4aN2M1 Cea 5.1
5 cm tumor in cecum removed, 17 out of 45 LN
1 cm omental deposit removed
LVI +
Cea post surgery 4.2
MSS, KRAS g12d, Braf WT
MT: 10.9
8/20/19 MRI & PET small liver spots
9/19 - 3/20 FOLFOX
1/02/20 CEA 3.6, 2/15- 4.4 3/15- 4.6, 6/05 4.6
Liver resection 4/15/20
6/20 Ct scan clear
7/20 Cea 8.6
8/20 Cea 12.4, suspicious ovarian cyst
9/20 Hysterectomy SOB (Ovaries and uterus positive for CRC)
post surgery cea 2.6

Malidosa
Posts: 35
Joined: Sun Dec 29, 2019 11:15 pm

Re: New member - scared & looking for tips

Postby Malidosa » Wed Jan 08, 2020 9:18 am

Vana3 wrote:Hi! I think this is a good question to be asking. I had a single CT scan that did not show a spot on my liver before my surgery. There was no MRI or PET scan done until 8 weeks after my colon resection. We then switched to a great specialist at Dana Farber who immediately ordered those two tests. My insurance covered it without question. I would not worry about the 9 days but I do wonder if my treatment might have been different with those additional scans and info.
I think you are doing a great job of questioning what’s best for you! Remember to breathe and trust your heart as you work thru these difficult decisions. Dana Farber set me up with a great app called headspace it has become such a good tool when I am facing intense moments with all of this.
Sending you good thoughts...


Vana3 - Thanks for taking the time to reply. I see yours was in you cecum as well. Where you having any symptoms? What was your road to being diagnosed?
Dx - Cecum mass - age 35
Stage 1 (T2, N0, M0) - CEA level - 0.5
26 nodes negative
Right Colectomy 1/16/20
Currently investigating a 3.2 cm adrenal mass

Deb m
Posts: 558
Joined: Tue Jan 14, 2014 10:08 am

Re: New member - scared & looking for tips

Postby Deb m » Wed Jan 08, 2020 9:50 am

Our oncologist ordered a Pet scan just a few days before the surgery. He wanted to be sure that there was no cancer elsewhere other than his colon before surgery. If they can't do a MRI, then perhaps they should do a Pet scan before surgery. A Pet scan sometimes shows much more than just a Cat scan does and it's good to know as much as possible before hand for the surgeon.

deb

Supportivechild
Posts: 24
Joined: Thu Dec 26, 2019 12:45 am

Re: New member - scared & looking for tips

Postby Supportivechild » Wed Jan 08, 2020 10:09 am

My mothers is located in her rectum. She was DX on 12-13-19 so far she's had an MRI of her pelvis, CT of her abdomen and pelvis, and she's currently in the back right now getting a PET Scan. Once her PET is completed she will get a CT of her chest. These test will help with her staging. So far shes T1N1 with 2 suspicious nodes.

The CT of the abdomen and pelvis was normal
The MRI showed 2 suspicious nodes sizes 5x3 mm 7x4 mm. They used some sort of probe inserted in her rectum for imaging. (Rectal Screening Protocol)

All these scans should give them an idea of what they are working with so they can prepare the best treatment plan.

Hopefully after this she can start treatment. We meet with radiation oncology tomorrow for a consult. So far the oncologist is saying 6 weeks of chemo/radiation, 4 weeks rest, surgery, rest, 4 weeks of chemo.

Jay
Caregiver of mother 56
12-13-19 DX Rectal Cancer
5 CM Mass
T1N1M0
2 suspicious lymph nodes 7x4mm 5x3 mm
Abdomen/Pelvis CT
MRI Rectal Screening
Chest CT
PET SCAN

Malidosa
Posts: 35
Joined: Sun Dec 29, 2019 11:15 pm

Re: New member - scared & looking for tips

Postby Malidosa » Wed Jan 08, 2020 11:05 am

I guess the most frustrating thing in a way is how different everyone's experience is. Like I try to find some sense of normalcy but yet everyone's story and path is different.

I had the CT scan and they claim everything looks good, which gave me some hope. I've been unable to get an MRI cause most imaging places are refusing since I had hemoclips placed during my colonoscopy. So they've jumped to the next stage which is surgery. They've basically told me that we will know for sure about lymph node involvement after the surgery.

So I feel like i'm just sort of stuck. Clinging for any sense of ok I can handle this but also struggling with the thought that I don't fully know what I'm dealing with if that makes sense.

idk just having a rough day I suppose.
Dx - Cecum mass - age 35
Stage 1 (T2, N0, M0) - CEA level - 0.5
26 nodes negative
Right Colectomy 1/16/20
Currently investigating a 3.2 cm adrenal mass

Supportivechild
Posts: 24
Joined: Thu Dec 26, 2019 12:45 am

Re: New member - scared & looking for tips

Postby Supportivechild » Wed Jan 08, 2020 12:54 pm

Malidosa,
I hope your day gets a little better for you! I was excited to find out that everything was normal and "unremarkable" with my mother CT abdomen-pelvis. I read the entire report and highlighted every area that was checked and considered normal. It's the what if that gets me every time we have to wait for results. What if they find something on her lungs. What if the pet scan starts glowing away ugh. If it not on her liver does that mean it's not on her lungs.. so many questions running thru my mind.

The fact that you don't know what you're dealing with completely makes sense. You can handle this. Take it one step at a time.... better said than done huh? If my mother could just get the cancer cut out she would! Any doctors mentioned a PET SCAN? I'm not sure if the rule of not having metal applies.

My mother is the opposite she doesn't want to know any results. All of her results comes directly to me. I know the results of the MRI she doesn't. I will let her wait for the doctor to tell her on Monday and fully explain everything in details.
Caregiver of mother 56
12-13-19 DX Rectal Cancer
5 CM Mass
T1N1M0
2 suspicious lymph nodes 7x4mm 5x3 mm
Abdomen/Pelvis CT
MRI Rectal Screening
Chest CT
PET SCAN

Malidosa
Posts: 35
Joined: Sun Dec 29, 2019 11:15 pm

Re: New member - scared & looking for tips

Postby Malidosa » Wed Jan 08, 2020 1:11 pm

Supportivechild wrote:Malidosa,
I hope your day gets a little better for you! I was excited to find out that everything was normal and "unremarkable" with my mother CT abdomen-pelvis. I read the entire report and highlighted every area that was checked and considered normal. It's the what if that gets me every time we have to wait for results. What if they find something on her lungs. What if the pet scan starts glowing away ugh. If it not on her liver does that mean it's not on her lungs.. so many questions running thru my mind.

The fact that you don't know what you're dealing with completely makes sense. You can handle this. Take it one step at a time.... better said than done huh? If my mother could just get the cancer cut out she would! Any doctors mentioned a PET SCAN? I'm not sure if the rule of not having metal applies.

My mother is the opposite she doesn't want to know any results. All of her results comes directly to me. I know the results of the MRI she doesn't. I will let her wait for the doctor to tell her on Monday and fully explain everything in details.



Wow! That's amazing what you are doing for your mother. You really are a supportive child. And yeah I get that I've read the report on my CT scan every time I get anxious. Whether anything was missed idk. But just reading it sort of helps the mind settle even just a little. But no, no one has mentioned a PET scan to me yet. And I think that's where my doubts come in. I read about everyone's PET scans and MRI scan's (which I can't get) and I'm just like ok? When I met with my surgeon last week she really eased the nervous. But they've slowly creeped back up and now I'm sitting here kicking myself for not asking more questions. SO.... cause I'm inpatient I made another appointment for this friday with her. Cause feel like I just gotta know. The did a abdomen/pelvic ct, why haven't they ordered one for the chest? Idk yeah i'm like you gotta know everything and pondering every missed question.
Dx - Cecum mass - age 35
Stage 1 (T2, N0, M0) - CEA level - 0.5
26 nodes negative
Right Colectomy 1/16/20
Currently investigating a 3.2 cm adrenal mass

Vana3
Posts: 42
Joined: Tue Aug 13, 2019 11:40 am
Facebook Username: ma

Re: New member - scared & looking for tips

Postby Vana3 » Wed Jan 08, 2020 10:03 pm

Vana3 - Thanks for taking the time to reply. I see yours was in you cecum as well. Where you having any symptoms? What was your road to being diagnosed?


I was not having ANY symptoms. I had just had a wonderful pregnancy, never constipated, full of energy, active..... But once I delivered my babe something felt off and I started having a lot of diarrhea so I worked on eating clean, loading up on fiber, and then one day I had a ton of blood in my stool I immediately went to the doctor and was able to convince them to order a colonoscopy. They were convinced it was hemorrhoids.... sadly, it was not. I got lucky that the tumor had started to bleed otherwise we would not have known to look. After we found the tumor things moved fast and I was in surgery 3 weeks later. They initially thought it was a stage 3 situation, but it turned out to be more advanced. We are now in the process of doing chemo which is working and figuring the next best steps....
Dx 36 yr, F, 7/19
T4aN2M1 Cea 5.1
5 cm tumor in cecum removed, 17 out of 45 LN
1 cm omental deposit removed
LVI +
Cea post surgery 4.2
MSS, KRAS g12d, Braf WT
MT: 10.9
8/20/19 MRI & PET small liver spots
9/19 - 3/20 FOLFOX
1/02/20 CEA 3.6, 2/15- 4.4 3/15- 4.6, 6/05 4.6
Liver resection 4/15/20
6/20 Ct scan clear
7/20 Cea 8.6
8/20 Cea 12.4, suspicious ovarian cyst
9/20 Hysterectomy SOB (Ovaries and uterus positive for CRC)
post surgery cea 2.6

Supportivechild
Posts: 24
Joined: Thu Dec 26, 2019 12:45 am

Re: New member - scared & looking for tips

Postby Supportivechild » Thu Jan 09, 2020 1:40 am

Malidosa wrote:
Supportivechild wrote:Malidosa,
I hope your day gets a little better for you! I was excited to find out that everything was normal and "unremarkable" with my mother CT abdomen-pelvis. I read the entire report and highlighted every area that was checked and considered normal. It's the what if that gets me every time we have to wait for results. What if they find something on her lungs. What if the pet scan starts glowing away ugh. If it not on her liver does that mean it's not on her lungs.. so many questions running thru my mind.

The fact that you don't know what you're dealing with completely makes sense. You can handle this. Take it one step at a time.... better said than done huh? If my mother could just get the cancer cut out she would! Any doctors mentioned a PET SCAN? I'm not sure if the rule of not having metal applies.

My mother is the opposite she doesn't want to know any results. All of her results comes directly to me. I know the results of the MRI she doesn't. I will let her wait for the doctor to tell her on Monday and fully explain everything in details.



Wow! That's amazing what you are doing for your mother. You really are a supportive child. And yeah I get that I've read the report on my CT scan every time I get anxious. Whether anything was missed idk. But just reading it sort of helps the mind settle even just a little. But no, no one has mentioned a PET scan to me yet. And I think that's where my doubts come in. I read about everyone's PET scans and MRI scan's (which I can't get) and I'm just like ok? When I met with my surgeon last week she really eased the nervous. But they've slowly creeped back up and now I'm sitting here kicking myself for not asking more questions. SO.... cause I'm inpatient I made another appointment for this friday with her. Cause feel like I just gotta know. The did a abdomen/pelvic ct, why haven't they ordered one for the chest? Idk yeah i'm like you gotta know everything and pondering every missed question.



I've noticed that treatment differs based on the location of the mass. Most likely after your surgery they will order the scans and go from there. Did your doctors explain the process after your surgery?
Caregiver of mother 56
12-13-19 DX Rectal Cancer
5 CM Mass
T1N1M0
2 suspicious lymph nodes 7x4mm 5x3 mm
Abdomen/Pelvis CT
MRI Rectal Screening
Chest CT
PET SCAN

Malidosa
Posts: 35
Joined: Sun Dec 29, 2019 11:15 pm

Re: New member - scared & looking for tips

Postby Malidosa » Thu Jan 09, 2020 9:26 am

Supportivechild wrote:
Malidosa wrote:
Supportivechild wrote:Malidosa,

I've noticed that treatment differs based on the location of the mass. Most likely after your surgery they will order the scans and go from there. Did your doctors explain the process after your surgery?



Yeah from what I can gather it appears that way too. My mass is at the base of my cecum, they said even though its so low no matter what they have to do a right colectomy. As far as the process after surgery, my surgeon said that all depends on the pathology report of the mass and the lymph nodes. I think I just might be overwhelming myself with too much info cause I keep comparing my situation to others and I think that's whats making everything confusing for me. I question "are they doing enough?" "are they taking all the right steps?"

It's hard when you are trying to be smart about what's happening but also trusting that this is the path that my doctors think is best. It's a fine line to walk.
Dx - Cecum mass - age 35
Stage 1 (T2, N0, M0) - CEA level - 0.5
26 nodes negative
Right Colectomy 1/16/20
Currently investigating a 3.2 cm adrenal mass

Supportivechild
Posts: 24
Joined: Thu Dec 26, 2019 12:45 am

Re: New member - scared & looking for tips

Postby Supportivechild » Thu Jan 09, 2020 12:22 pm

Malidosa wrote:
Supportivechild wrote:Malidosa,

I've noticed that treatment differs based on the location of the mass. Most likely after your surgery they will order the scans and go from there. Did your doctors explain the process after your surgery?
[/quote]


Yeah from what I can gather it appears that way too. My mass is at the base of my cecum, they said even though its so low no matter what they have to do a right colectomy. As far as the process after surgery, my surgeon said that all depends on the pathology report of the mass and the lymph nodes. I think I just might be overwhelming myself with too much info cause I keep comparing my situation to others and I think that's whats making everything confusing for me. I question "are they doing enough?" "are they taking all the right steps?"

It's hard when you are trying to be smart about what's happening but also trusting that this is the path that my doctors think is best. It's a fine line to walk.[/quote]


I spoke with my mom about your situation today on our way to the radiation consultation. You're wondering if they are doing enough and my mother is wondering why they are doing so much. I'm learning that everything is for a reason. I had to schedule an appointment to get my mothers tooth pulled because she's at risk for an infection once she starts chemo. My mothers pet scan and ct results from yesterday came back. The cancer is localized! So she's T1N1M0 2 suspicious lymph nodes

Just know that once they remove your mass you will have answers and a treatment plan based on what they find. Thats when the ball will really start rolling for you. Trying to figure everything out on your own based on other people's experiences can be overwhelming. The unknown is very overwhelming.

Jay
Caregiver of mother 56
12-13-19 DX Rectal Cancer
5 CM Mass
T1N1M0
2 suspicious lymph nodes 7x4mm 5x3 mm
Abdomen/Pelvis CT
MRI Rectal Screening
Chest CT
PET SCAN

Malidosa
Posts: 35
Joined: Sun Dec 29, 2019 11:15 pm

Re: New member - scared & looking for tips

Postby Malidosa » Thu Jan 09, 2020 1:20 pm

Deb m wrote:Malidosa,

My husband ended up being a stage IIbt4a. His mass was 3.7cm long. His cells were moderately differentiated and he was positive for LIV(meaning cells were found in his lymph channels/veins, but not nodes.



Hey Deb, Just curious if you know what exactly it means for the cells to be moderately differentiated? Mine was classified as that as well?
Dx - Cecum mass - age 35
Stage 1 (T2, N0, M0) - CEA level - 0.5
26 nodes negative
Right Colectomy 1/16/20
Currently investigating a 3.2 cm adrenal mass


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