New Member, newly diagnosed

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hksvcap1
Posts: 13
Joined: Sat Jan 04, 2020 8:26 pm

Re: New Member, newly diagnosed

Postby hksvcap1 » Sun Jan 12, 2020 9:25 am

I’ve gotten a second opinion and saw another surgeon on Friday. (My complete saga is in a different post).

Every appointment just seems worse but due to the nature of my case it’s like not knowing how bad. Since the mass in my cecum developed an abscess (this was back in November when I was hospitalized) that means perforation. Because of that the approach will be very aggressive. Right hemicolectomy, remove appendix, gallbladder (I have stones), uterus and ovaries, probably spleen, abdominal tissue and HIPEC chemo in hopes of attacking anything that can’t be seen. CT scan tomorrow to see what everything looks like now (last one was Nov 22). Surgery will be the first week of February.

I’ve had pain again since Dec 26 (one week after finishing antibiotics). All I want to do is lay in bed because of it.

I was diagnosed on Dec 31. I’m terrified and feel as though this is just growing in my body and getting worse every day. I know nothing for sure. I’m crying more now than when I was first diagnosed. I’m normally a stronger person, but what I’m feeling I can’t even describe.

I don’t doubt the surgeon and the team he’s putting together. They appear to be excellent. I’m just wondering what’s going on inside me and how bad it all is.

I don’t know what to expect, what the future looks like or anything. I’m so scared.

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

Re: New Member, newly diagnosed

Postby Malidosa » Sun Jan 12, 2020 11:14 am

hksvcap1 wrote:I’ve gotten a second opinion and saw another surgeon on Friday. (My complete saga is in a different post).

Every appointment just seems worse but due to the nature of my case it’s like not knowing how bad. Since the mass in my cecum developed an abscess (this was back in November when I was hospitalized) that means perforation. Because of that the approach will be very aggressive. Right hemicolectomy, remove appendix, gallbladder (I have stones), uterus and ovaries, probably spleen, abdominal tissue and HIPEC chemo in hopes of attacking anything that can’t be seen. CT scan tomorrow to see what everything looks like now (last one was Nov 22). Surgery will be the first week of February.

I’ve had pain again since Dec 26 (one week after finishing antibiotics). All I want to do is lay in bed because of it.

I was diagnosed on Dec 31. I’m terrified and feel as though this is just growing in my body and getting worse every day. I know nothing for sure. I’m crying more now than when I was first diagnosed. I’m normally a stronger person, but what I’m feeling I can’t even describe.

I don’t doubt the surgeon and the team he’s putting together. They appear to be excellent. I’m just wondering what’s going on inside me and how bad it all is.

I don’t know what to expect, what the future looks like or anything. I’m so scared.


Hey there,

First remember to breathe. I know it’s hard but just breathe.

I was diagnosed the day before you 12/30. Believe me when I say I KNOW exactly the emotions you are going through right now. The fear of the unknown is a fear I have never even come close to in my life. I have these dark moments too and oddly enough it feels like it makes time move slower.

But I want you to know some things that have helped me and will hopefully help you too.

1. You are still alive. (Technically we face tons of uncertainties everyday but we normally don’t put much thought into them)

2. You found the little bastard. (And are now taking the steps to defeat him)

3. Accept that what it is, it is. (Now I know you don’t know the full extent of yours yet, but technically I won’t either until my little punk gets pulled out, BUTT after crying for 3 weeks straight. I finally realized that no amount of crying or searching for answers will change what the facts are for your situation. Yours is what it is now, go back and read #2)

4. But also know that you are allowed to cry, be frustrated and pissed off, sometimes even be happy ( not at the diagnosis but I’ve actually struggled harder with being happy and still catching myself laughing at things cause my inner devil tells me I’m not allowed to be happy during this time) remember each emotion is normal and healthy to experience during this time you gotta kick some to the curb once in awhile for your sanity.

5. Back to searching on the internet. STICK TO THE FACTS THAT YOU KNOW ABOUT YOUR SITUATION. We are all guilty of that. I think I posted on the site for the very first time the day of diagnoses which means I was reading and lurking a few weeks before. So I’ve spent my fair share of time googling and scared. PLEASE know that all I’ve learned is that everyone’s experience with this is different. I read all the Colondar model stories on here and haven’t found one that was similar to my story. I’ve read all the symptoms of other people trying to gauge is my symptoms like theirs, does that mean mine is at that stage? The truth is the only real truth is what is fact about your situation. (Again I know you don’t know all the facts yet) BUTT that’s means we move to step 6)

6. Ive heard many people say cancer isn’t a race it’s a marathon. Take one day at a time. Trust me I know I hated hearing this a few weeks ago. It was the holiday season like yours and it felt like everyone was moving at a snails pace and my heart was moving at the speed of a Jaguar.
Butt unfortunately in this case you have to just look at what’s coming and focus on getting through that. The reading online can overwhelm. I’ve read so many stories about the different chemos that people take and honestly I had to stop. I know that it’s probably gonna be a discussion that I will have but right now I need to worry about the surgery. That’s my next step. Jumping ahead overwhelms you. This is a new concept for many people that Are diagnosed with cancer I’m sure and that’s appreciating today! Knowing that you can not control tomorrow. A fact that was real before we had cancer but we were to absorbed in life’s less trivial things to stop and let it sink in.

7. Lastly please know that I know you don’t know me. But I’m sitting here like you with the same emotions. I found out I had an anal fissure which is what sent me to the GI in the first place and I’m sitting here nursing this ass pain back to health (this crap hurts! To all that read this do not let yourself get an anal fissure) so I too am trying to absorb all this info while also basically stuck sitting in baths and watching my diet to have soft poos (fun times!). In short what I’m saying is I don’t know what pain you are experiencing right now but know that you aren’t alone. That if you need to cry come here and cry. If you want to talk message me and we can talk. I’m here going through the same rounds of emotions. And also if you need to, re-read the steps again. Cause I find myself having to go through them everyday!
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

hksvcap1
Posts: 13
Joined: Sat Jan 04, 2020 8:26 pm

Re: New Member, newly diagnosed

Postby hksvcap1 » Sun Jan 12, 2020 11:34 am

You don’t know how much I appreciate your response. Every single point you’ve made I need to incorporate in my life right now. I’m going to copy and paste those in my phone’s notes to re-read.

You’re right...I’m alive and need to take this one day at a time.

I wish you well for your surgery this week! Please feel free to message me as well for any support you may need. We’ll get through this!

DarknessEmbraced
Posts: 3471
Joined: Sat Nov 01, 2014 4:54 pm
Facebook Username: Riann Fletcher
Location: New Brunswick, Canada

Re: New Member, newly diagnosed

Postby DarknessEmbraced » Sun Jan 12, 2020 3:00 pm

I'm sorry for your diagnosis and that you're going through this!*hugs* The waiting is awful! I hope that surgery and chemo go well for you!*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 01/21/16
NED 11/10/16
CT Scan moved up due to high CEA 08/21/17
NED 09/25/17
NED 12/21/18
Clear colonoscopy 09/23/19
Clear 5 year scans 11/21/19- Considered cured! :)

hksvcap1
Posts: 13
Joined: Sat Jan 04, 2020 8:26 pm

Re: New Member, newly diagnosed

Postby hksvcap1 » Mon Jan 13, 2020 9:57 am

DarknessEmbraced wrote:I'm sorry for your diagnosis and that you're going through this!*hugs* The waiting is awful! I hope that surgery and chemo go well for you!*hugs*


Thank you for the hugs and support!!! I appreciate it. I just keep telling myself to take everything one day at a time. :D

Sometimes it works, sometimes not. I have a CT scan today and developed a low grade fever over the weekend. Feeling a bit “crummy”. Waiting for a call from my surgeon’s office as to whether I should check in at hotel hospital or wait and watch. Deep breaths.

hksvcap1
Posts: 13
Joined: Sat Jan 04, 2020 8:26 pm

Re: New Member, newly diagnosed

Postby hksvcap1 » Tue Jan 14, 2020 10:10 am

Sometimes it works, sometimes not. I have a CT scan today and developed a low grade fever over the weekend. Feeling a bit “crummy”. Waiting for a call from my surgeon’s office as to whether I should check in at hotel hospital or wait and watch. Deep breaths.[/quote]

I was admitted to the hospital yesterday. Blood work and CT scan. The tumor is now growing into my abdominal wall. I will have a team of 7 surgeons. The latest addition will remove part of my ab wall and reconstruct. HIPEC may not be able to happen because of this. My surgeon said I would be on systemic chemo either way.

The good news (I know, there’s good news??), liver, pancreas, lungs and kidneys all look good.

Hopefully surgery will be next week. I’ll be sent home in a day or two with adequate pain mgmt and possible antibiotics if needed.

This is a journey and I haven’t even had surgery yet!

AmyG
Posts: 340
Joined: Tue Dec 25, 2018 8:08 pm

Re: New Member, newly diagnosed

Postby AmyG » Wed Jan 15, 2020 10:18 pm

Holy shitballs, what an adventure.

How are you holding up? Remember, you're not a cartoon of milk, you have no expiration date. You have half the hospital looking out for you!! It's great that you have plenty of organs that didn't want to get involved with that mess. You should treat your liver to a glass of wine or something. :lol:

All the best to you, I look forward to reading how wonderful your surgery went!
42 dx @ 9wks pregnant w/baby #8 8/18
Sigmoid colon resection 9/18
Adenocarcinoma, G2, T3N0M0..or so we thought
KRAS/BRAF wild
Liver biopsy is malignant, stage iv now boys!
Delivered healthy baby 3/19
FOLFOX + Avastin 5/19
CEA 167 to 24 after 4 rounds
Liver resection 8/28/19
NED!! CEA 2.3
CEA 5.8 idk wtf is up with that, but everything else is clear!
CEA 3.7 make up your damn mind...
CEA 1.5 that's a new low!

DarknessEmbraced
Posts: 3471
Joined: Sat Nov 01, 2014 4:54 pm
Facebook Username: Riann Fletcher
Location: New Brunswick, Canada

Re: New Member, newly diagnosed

Postby DarknessEmbraced » Sun Jan 19, 2020 11:58 am

I'm sorry you're going through this!*hugs* I hope you feel better soon and that your surgery goes well!*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 01/21/16
NED 11/10/16
CT Scan moved up due to high CEA 08/21/17
NED 09/25/17
NED 12/21/18
Clear colonoscopy 09/23/19
Clear 5 year scans 11/21/19- Considered cured! :)


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