Next Scan--Next Week--Makes me crazy!

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BeckyH
Posts: 13
Joined: Sat Nov 26, 2016 12:19 pm

Next Scan--Next Week--Makes me crazy!

Postby BeckyH » Wed Nov 22, 2017 2:13 am

Hello,
Happy Thanksgiving to all of my fellow Colon Club Warriors out there. Next week, on 11/29/17, I will be having my next follow up CT scan and blood work. Because my cancer was the Signet Ring Cell adenocarcinoma subtype, my oncologist has me on a schedule of every 3 months. Since my surgery was on February 8, 2016...we are approaching the two year mark. I wonder when the time will come where I don't start to feel a little more crazy than normal around Scan time? I feel fine and don't have any significant symptoms. I do worry with every single twinge that I get in my tummy and every single change in bowel that "It's BAAACCCCKKKK!" Sometimes I almost feel frozed by my fear and anxiety about the probability of recurrence. Is there anyone else out there that feels this way?

I have problems with my bowels that bounce between constipation and urgency/diarrhea. And then I will have some periods of somewhat normal BM's. Sometimes I think it is dependent on what I eat and the amount; other times, it is just hard to tell.

My neuropathies persist and as the weather gets colder, they are much more noticeable. Texting on a phone can be amusing due to my fingers feeling like they are wrapped in gauze. I have heard this might get better. And does chemo brain ever go away? And does anyone else suffer from insomnia?

On the positive side, I am able to attend and enjoy almost everything my 12 and 14 year old are involved in. I have to skip the super cold nights for soccer and marching band but thank God for Facetime! I generally enjoy every single moment that I possibly can. Early on, I read about the rarity of the Signet Ring Cell variant of colon cancer and how much more aggressive it is. I keep waiting for the proverbial other shoe to drop. Keep me in your thoughts and send up positive vibes or good prayers. I am happy to have this place to share my good news AND my bad news. My positive thoughts and prayers go out to all of my fellow colon cancer warriors and families out there.
Happy Thanksgiving,
Becky
DX: Suspected Colon Cancer January 29, 2016
2/8/16: Removed 17" Colon (Sigmoid area) & 1"Rectum & 58 lymph nodes
2/12/16: CA in 35/58 lymph nodes
Cancer: Stage 3C T3N2B
Path: Signet Ring Cell Adenocarcinoma
Chemo: 12 rounds of FOLFOX, (3/17/16 to August, 2016) Leukovorin DC'd after WBC decrease.
Scans: F/U scans every 3 months; last one 8/2017--All NED.
CEA: Stable b/t 1 and 2

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

Re: Next Scan--Next Week--Makes me crazy!

Postby susie0915 » Wed Nov 22, 2017 9:04 am

Your feelings are so normal. I am over two years since my surgery and I still get anxiety when scans and bloodwork are done. I just had bloodwork done yesterday and it was all good. My oncologist and surgeon graduated me to 6 month visits, I had been doing every 3 months. I did speak with an oncology counselor, and survivorship nurse in the last month and they were very helpful in dealing with these feelings. It may be helpful for you if you call your oncologist and ask if there is a counselor on staff that you can meet with. Good luck with your scan next week and keep us updated. Happy Thanksgiving.
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

[Ana & Alex]
Posts: 96
Joined: Tue Feb 14, 2017 5:14 pm
Location: Austria

Re: Next Scan--Next Week--Makes me crazy!

Postby [Ana & Alex] » Wed Nov 22, 2017 9:59 am

Dear Becky, dear Susi,

I feel ya. I have my first scan on Friday and I'm having trouble sleeping since yesterday. I really do enjoy life and the day goes by so fast!

I'm enjoying work so much and the time I have with my daughter is so delicious... but at night, when I lay my head to sleep, it all comes back to me.

I will go through it again if I must, but I cannot die. Not while my daughter still needs me so much. And so I try to think that it will all be well and about all the things I want to show her and experience together...

I had my bloodwork done today and I forgot to check it before i came home. I'm a little anxious but I'll wait until tomorrow before I control it with my surgeon. I try to be positive... and seize the day..

But latter I've been having rectal discomfort and I'm thinking it's colitis (disuse colitis, I have a perm colostomy which I'm in love with) - but sometimes I wonder if something is growing down there again...

Survivorship is hard... but I will be happy as long as I life and I refuse to waste my happiness with fear... even when sometimes a can't control it.

My husband doesn't really get it, but my family is supportive. You are the ones who really get it...

Thanks for sharing Becky, and all of you for listening..

Love,
Ana
Dx @ 29 yo. Mum (2 y.o.) & Wife

12/2016: Rectal AdenoCa G2. CEA 4.3. RAS Wild. MSS. IIIB.
01 - 03/2017: 28 RTx + CHT 2,5 g/d Capecit.
03 - 06/2017: Suplemments and Cimetidine.
05/2017: TME/TAMIS + permanent Colostomy CEA 0.5
05/2017: ypT2N2aM0 (4/15), good cCR, limited pCR
06 - 8/2017: 4x CapOx 3,5 g/d (2x Oxi reduced to 80%)
09 -11/2017: 3x Capecit. monotherapy 4g/d
12/2017: Aspirin, Vit. D3, Curcumin, Multivitamin.

BeckyH
Posts: 13
Joined: Sat Nov 26, 2016 12:19 pm

Re: Next Scan--Next Week--Makes me crazy!

Postby BeckyH » Fri Nov 24, 2017 1:33 am

So, next week a colonoscopy has been added in. I prep on Monday and have the procedure on Tuesday. Wednesday morning I have my routine follow up CT Scan and blood work. I see the oncologist on Thursday.

I have enjoyed Thanksgiving and my family. As long as I keep busy I am okay. But nights can be torturous. I love my husband and my 14 year old daughter and 12 year ok son to infinity and beyond. And I know that if I get sick again, we will muddle through. But....more than anything, I don’t want to hurt them again.

Thanks for listening. I do have a counselor and study Eckhart Tolle and Brene Brown. But sometimes I just need to lay my vulnerabilities bare. My blessings flow to all my fellow warriors and families!
DX: Suspected Colon Cancer January 29, 2016
2/8/16: Removed 17" Colon (Sigmoid area) & 1"Rectum & 58 lymph nodes
2/12/16: CA in 35/58 lymph nodes
Cancer: Stage 3C T3N2B
Path: Signet Ring Cell Adenocarcinoma
Chemo: 12 rounds of FOLFOX, (3/17/16 to August, 2016) Leukovorin DC'd after WBC decrease.
Scans: F/U scans every 3 months; last one 8/2017--All NED.
CEA: Stable b/t 1 and 2

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

Re: Next Scan--Next Week--Makes me crazy!

Postby Lee » Sun Nov 26, 2017 5:31 pm

All the best with your upcoming scan on Monday.

And of course your upcoming colonoscopy. Good luck with the prep work.

Hope it's all good news for you,

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 - 16 years and counting!

BeckyH
Posts: 13
Joined: Sat Nov 26, 2016 12:19 pm

Re: Next Scan--Next Week--Makes me crazy!

Postby BeckyH » Wed Dec 13, 2017 10:49 pm

Hello Colon Friends;

I had my follow up appointment and currently show NO EVIDENCE OF DISEASE! My CEA was 1.2 and all the other bloodwork was normal. My CT scan was clear. Because I had noticed some blood in my stool, I also had a colonoscopy slightly ahead of schedule. It was also completely normal.

Because my cancer was of the Signet Ring Cell variety, I am so very leery of becoming optimistic. Thus far, I have just assumed it will be back. I don't know how to flip that switch in my brain. It is somehow easier to believe that it WILL be back as opposed to believing it is gone and then getting that rug pulled out from under my butt again. Am I making any sense?

I had a fleeting sense of hope and burst into tears in the Cancer Center parking lot. This startled my husband but he is used to me and my "crazy".

I am so very thankful to have another Christmas season with my 12 and 14 year old. I am focusing on enjoying my moments. While I hate cancer and wish with my whole heart that NONE of us had to deal with it, I have to admit it has given me certain gifts. I am much more patient with my young teenaged daughter. When my baby (who is 12) wants me to come into his room and scratch his back and talk to him at night, I do it even though I am usually very tired myself. I am relishing all of these sweet moments. How sad that I didn't before and would get frustrated and angry so much more easily.

I wish you a Merry Christmas, Happy Holidays, Joyous Hannukah, or lovely season however you celebrate it.

Becky
DX: Suspected Colon Cancer January 29, 2016
2/8/16: Removed 17" Colon (Sigmoid area) & 1"Rectum & 58 lymph nodes
2/12/16: CA in 35/58 lymph nodes
Cancer: Stage 3C T3N2B
Path: Signet Ring Cell Adenocarcinoma
Chemo: 12 rounds of FOLFOX, (3/17/16 to August, 2016) Leukovorin DC'd after WBC decrease.
Scans: F/U scans every 3 months; last one 8/2017--All NED.
CEA: Stable b/t 1 and 2

User avatar
Shana
Posts: 401
Joined: Sun Jul 30, 2017 9:45 pm
Location: Sonoma, CA

Re: Next Scan--Next Week--Makes me crazy!

Postby Shana » Thu Dec 14, 2017 10:25 am

BeckyH wrote:Hello Colon Friends;

I had my follow up appointment and currently show NO EVIDENCE OF DISEASE! My CEA was 1.2 and all the other bloodwork was normal. My CT scan was clear. Because I had noticed some blood in my stool, I also had a colonoscopy slightly ahead of schedule. It was also completely normal.

Because my cancer was of the Signet Ring Cell variety, I am so very leery of becoming optimistic. Thus far, I have just assumed it will be back. I don't know how to flip that switch in my brain. It is somehow easier to believe that it WILL be back as opposed to believing it is gone and then getting that rug pulled out from under my butt again. Am I making any sense?

I had a fleeting sense of hope and burst into tears in the Cancer Center parking lot. This startled my husband but he is used to me and my "crazy".

I am so very thankful to have another Christmas season with my 12 and 14 year old. I am focusing on enjoying my moments. While I hate cancer and wish with my whole heart that NONE of us had to deal with it, I have to admit it has given me certain gifts. I am much more patient with my young teenaged daughter. When my baby (who is 12) wants me to come into his room and scratch his back and talk to him at night, I do it even though I am usually very tired myself. I am relishing all of these sweet moments. How sad that I didn't before and would get frustrated and angry so much more easily.

I wish you a Merry Christmas, Happy Holidays, Joyous Hannukah, or lovely season however you celebrate it.

Becky


So happy for your positive news! You are right about how cancer changes our perspective about many things. I have more patience and tolerance than I ever had and far more appreciation of the simpler pleasures in life. I continue to try and make meaningful memories with my family because the future is still kind of scary. Stay positive and continue to relish every sweet moment as you said.

Happy Holidays and wishing you the very best New Year!

Shana
DX - 12/16
MSS - KRAS wild
Well-differentiated adenocarcinoma at splenic flexure
Stage IV CC with liver mets
5FU - Failed twice - 1/17 and 3/17
Irinotecan + Cetuximab: 8/17
Irinotecan and Erbitux ran it's course. CEA rising
Primary tumor invaded tail of pancreas and spleen. Liver mets major concern
Y-90 radioembolization on 9/17/18, liver enzyymes have dropped. 10 Radiation treatments to primary tumor completed too. CT scan Nov to assess overall situation...

Sheila08
Posts: 2
Joined: Wed Jan 24, 2018 11:57 am

Re: Next Scan--Next Week--Makes me crazy!

Postby Sheila08 » Mon Jan 29, 2018 12:40 am

Hi shana
Your post give me hope. My husband got a perforated sigmoid colon cancer (signet ring cell). Resection margin positive, no lymph node or metastatic. was really down as doctor said his prognostic is not good.

He is still in his second session chemo.

sheila


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