Upstaged after surgery

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Jlschueler
Posts: 8
Joined: Tue Jun 12, 2018 2:54 pm
Facebook Username: Jessica.ramey

Upstaged after surgery

Postby Jlschueler » Tue Oct 30, 2018 1:48 am

Well, my path report was uploaded to my chart, and after reviewing it, it appears I’ve been upstaged from stage 2A to stage 3C. Even more concerning the tumor was identified as “Adenocarcinoma with Signet Cell Features”. I know signet cell is not good news. Any words of advice? I see my surgeon Thursday. Any questions I should ask?

Nohogirl
Posts: 69
Joined: Sun Oct 14, 2018 12:15 am

Re: Upstaged after surgery

Postby Nohogirl » Tue Oct 30, 2018 11:28 am

Hello,

Sorry to hear about your upstaging. Don't panic and don't feel discouraged. I have seen many signet cell cancer survivors in this group.

Have you had any chemo and radiation before your surgery? With rectal cancer, neo adjuvant chemo radiation is normally the protocol.

I assume you did, since there was a big gap between your diagnoses and surgery.

Also what were the characteristics of your tumor on the pathology report from your biopsies before surgery? If the description is completely different, i would consider having another pathologist, perhaps another pathogy company examine the removed tumor. Also any suspicious lymph nodes noted on the CT scan report that they didn't pay attention to?

This whole thing sounds a little awkward to me. Mistakes happen all the time, even in medical field. Yours might be one of them. Hopefully.

Good luck
04/18 DH 49 diag.stage 2A T3N0M0 rectal cancer moderately differentiated.
05/18 chemorad. (Xeloda) 28 days
08/18 Surgery- 24 cm including entire rectum out
Stage II T2N0M0 moderate to poorly diff. adenocarcinoma
0 of 15 lymph nodes
No PNI
No LVI
Clear margins
Regression Grade 3
10/29 Started Folfox

Jlschueler
Posts: 8
Joined: Tue Jun 12, 2018 2:54 pm
Facebook Username: Jessica.ramey

Re: Upstaged after surgery

Postby Jlschueler » Tue Oct 30, 2018 1:36 pm

Hi, thanks for your reply! I realize I need to make time to make a signature. I did do 28 days of radiation and Xeloda. The path report from my colonoscopy indicates the tumor had signet ring features, but I think everyone wanted to wait to confirm this during surgery (especially since my understanding is that it doesn’t change the course of treatment). I had a PET, MRI, and CT without contrast (for radiation planning), and they all indicated no adenopathy and no metastasis to other organs. So the positive nodes were definitely a surprise. Does anyone know what the functional difference is between SRCC and A w/SRF?

child#6
Posts: 30
Joined: Wed May 16, 2018 7:51 pm
Facebook Username: John Smith

Re: Upstaged after surgery

Postby child#6 » Tue Oct 30, 2018 3:45 pm

It is not uncommon to be up staged. This group is awesome and will be a ton of support.

Jlschueler
Posts: 8
Joined: Tue Jun 12, 2018 2:54 pm
Facebook Username: Jessica.ramey

Re: Upstaged after surgery

Postby Jlschueler » Tue Oct 30, 2018 4:48 pm

In addition to all this, I’ve had a low grade fever the past two days and generally feel like crap (had surgery on 10/17). I contacted my surgeon, and he wants to stick with the Thursday appointment. I wasn’t able to speak with anything directly but his nurse left a message just as the office was closing (so frustrating), saying that the surgeon has “new orders” for me. My fear is that he suspects stage IV based on the path report. Ugh, I’m just generally freaking out. I appreciate you all listening.

stu
Posts: 875
Joined: Sat Aug 17, 2013 5:46 pm

Re: Upstaged after surgery

Postby stu » Tue Oct 30, 2018 5:33 pm

Hi ,
I really don’t think that is the case . Trust me all my mum’s mets were identified through scans . If you were dealing with a rheumatologist you would have not made that leap . It’s just really hard because it’s cancer . Fear is never far from the surface but things are still looking good for you . I doubt they would provide information that way .
Stay strong ,
Stu
supporter to my mum who lives a great life despite a difficult diagnosis
stage4 2009 significant spread to liver
2010 colon /liver resection
chemo following recurrence
73% of liver removed
enjoying life treatment free
2016 lung resection
Oct 2017 nice clear scan . Two lung nodules disappeared
Oct 2018. Another clear scan .

WarriorSpouse
Posts: 148
Joined: Tue Aug 16, 2016 9:02 pm

Re: Upstaged after surgery

Postby WarriorSpouse » Tue Oct 30, 2018 11:00 pm

I am sorry to read of your upstage, but one thing I have noticed here is that with a higher staging will come with a more aggressive treatment plan and a better post treatment surveillance plan to seek out any reoccurrence.

This may sound scary to you, but it should reassure you that you are dealing with your cancer diagnosis with the best treatments and the most active surveillance program to keep up your future good health. Lower staged patients are sometimes not scanned as much and many do more worrying than knowing that things are on track and going well. Never be afraid of knowledge.

It is better to know, plan, and execute your treatment plan and have planned scans to ensure all is going well in the years to come.

Best wishes,
WS
Spouse of wife 47 years old
10/2014, Stage IV Metastatic CC
Lymph node involvement 12/15, w/ positive PET on para-aortic lymph nodes.
5 cm sigmoid tumor resection as well as positive Virchow lymph node.
KRAS mut, Highly Differentiated, Lynch Negative
Folfox and Avastin 1 YR (Oxi for 5 months) NED 05/2015
Zeloda and Avastin since 01/2016
Chemo break 03/2017, back on Zeloda and Avastin 04/2017.

"...Perseverance is not a long race; it is many short races one after the other."
-Walter Elliot

Jlschueler
Posts: 8
Joined: Tue Jun 12, 2018 2:54 pm
Facebook Username: Jessica.ramey

Re: Upstaged after surgery

Postby Jlschueler » Wed Oct 31, 2018 2:44 pm

Sorry, one more question. . . I felt really good the first five or so days after surgery, but since then I’ve been feeling progressively worse-low grade fever, aches, chills, fatigue. I was pretty active and fit before surgery, and rarely got sick. It could be I’m just not used to feeling this way, but it’s definitely not helping my mental state. Have others experienced this? I see my doctor tomorrow, but so far he seems to minimize everything.

mandosquiddy
Posts: 15
Joined: Sat Oct 06, 2018 11:45 am
Location: Colorado
Contact:

Re: Upstaged after surgery

Postby mandosquiddy » Wed Oct 31, 2018 5:12 pm

Do you think you could have an infection of some sort? You shouldn't be feeling sick a week out so maybe something else is going on. I had a catheter in for a few weeks after one of my surgeries which causes a UTI which gave me the same symptoms.
4/2017 DX: sigmoid colon cancer
colon resection with colostomy
stage II with one positive margin
5/2017 - 11/17 12 rounds of FOLFOX
11/17 - 12/17 Increase in back pain and testicular pain.
CEA increased, CT scan indicated mass on rectal portion of colon
1/18 - 2/18 25 rounds of radiation treatment
5/18 surgery, interoperative radiation, bladder/ureter modification
7/18 normal blood work and CT scan
9/18 increased CEA, mass on outside of small intestine
10/18 Debulking surgery HIPEC skipped bc complications

heiders33
Posts: 306
Joined: Sat Nov 04, 2017 11:08 am

Re: Upstaged after surgery

Postby heiders33 » Wed Oct 31, 2018 10:03 pm

Your doctor shouldn’t minimize this. I was always told after surgery to watch for the very symptoms you describe. It could be an infection.
36 year-old female
May 2017: Dx rectal cancer at T3N2M0
MSS, KRAS G12A
June-July 2017: 28 days of XEL/radiation
Sep 2017: laparoscopic LAR/loop ileostomy
Oct 2017 - February 2018: XELOX six rounds
Mar 2018: reversal
Apr 2018: CEA 2.1, normal blood counts
May 2018: CT liver spot
Aug 2018: Abnormal PET, CEA 2.4
Sep 2018: robotic and laparoscopic liver resection with HAI pump
Oct 2018: Clear CT and colonoscopy, CEA 1.7, begin six months FUDR and FOLFIRI

DarknessEmbraced
Posts: 3155
Joined: Sat Nov 01, 2014 4:54 pm
Facebook Username: Riann Fletcher
Location: New Brunswick, Canada

Re: Upstaged after surgery

Postby DarknessEmbraced » Mon Nov 05, 2018 12:20 pm

I'm so very sorry that you were upstaged following surgery!*hugs* I would tell your doctor the symptoms you are having. Good luck and hope you feel better soon!*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

Nohogirl
Posts: 69
Joined: Sun Oct 14, 2018 12:15 am

Re: Upstaged after surgery

Postby Nohogirl » Tue Nov 06, 2018 11:27 am

Hi Jlschueler,

How are you feeling? Just checking on you. Did your fever go away? Hoping you are doing and feeling better.
04/18 DH 49 diag.stage 2A T3N0M0 rectal cancer moderately differentiated.
05/18 chemorad. (Xeloda) 28 days
08/18 Surgery- 24 cm including entire rectum out
Stage II T2N0M0 moderate to poorly diff. adenocarcinoma
0 of 15 lymph nodes
No PNI
No LVI
Clear margins
Regression Grade 3
10/29 Started Folfox


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