Rectal cancer diagnose with isolated tumor cells (ITC)

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KathyLynn
Posts: 61
Joined: Thu Aug 31, 2017 3:40 pm
Location: Rock Hall, MD

Re: Rectal cancer diagnose with isolated tumor cells (ITC)

Postby KathyLynn » Thu Feb 01, 2018 3:34 pm

Hi All,
So after my second opinion, I waited for the oncologist to bring it up at the board
All agreed that I should not have any chemo or radiation
So, I will see my surgeon for all follow up tests.
I cancelled my appointment with John Hopkins. (Third opinion)
I hope I made the right decision
I’ll will keep everyone updated

Thanks
Kathy
8/2017. RC
11/27/2017. Robotic LAR. No chemo/rad
12/2017 Moderatley differentiated, 3.0 cm in greatest dimension
Macroscopic tumor perf: not identified. All margins of resection and proximal neg for tumor.
Lymphovascular and perineural invasion: not identified.
1/13/2018. T2N0M0 with isolated tumor cell (ITC)
7/2018. CEA 2.0. 10/18: 2.0. 1/19: 2.3

User avatar
O Stoma Mia
Posts: 1464
Joined: Sat Jun 22, 2013 6:29 am

Re: Rectal cancer diagnose with isolated tumor cells (ITC)

Postby O Stoma Mia » Fri Feb 02, 2018 5:16 am

KathyLynn wrote:... So after my second opinion, I waited for the oncologist to bring it up at the board
All agreed that I should not have any chemo or radiation
So, I will see my surgeon for all follow up tests.
I cancelled my appointment with John Hopkins. (Third opinion)
I hope I made the right decision
I’ll will keep everyone updated

Thanks
Kathy

Congratulations! It's good to hear that everyone on the tumor board agreed to "no chemo, no radiation" for you. This will save you a lot of trouble in the future. Your post-surgery pathology was excellent, apart from the reference to ITCs. But ITC's probably don't have much prognostic value for predicting future recurrences for your type of staging anyway -- at least that's what the scientific literature as a whole seems to suggest.

In my opinion, you made the right decision, given your excellent risk-factor profile.

For now, the main problem will be dealing with the long-term effects of the rectal cancer surgery itself. These symptoms are collectively called LARS -- Low Anterior Resection Syndrome.

Since all of your follow-up tests are to be coordinated by your surgeon from now on, what I would suggest is that you talk to your surgeon not only about monitoring for possible cancer recurrences, but also about how to manage the various issues arising from your current lack of complete rectal "plumbing" anatomy.

Basically, in my opinion, the task at hand for you right now is to focus mainly on these QOL issues, such as fecal incontinence, since it is likely that your main concerns over the next few months will be to re-educate your bowel system to return to normal as soon as possible.

Although your surgeon may not have too many specific suggestions in this regard, he should at least be able to recommend referrals to specialists who know how to diagnose and treat issues like this such as pelvic floor dysfunction, bowel dysfunction, dyssynergia, etc.

So, what I am suggesting is that you should try to work out a comprehensive plan for your 5-year follow-up that includes much more than the standard quarterly blood tests and yearly CT scans for cancer. Since you are a rectal cancer patient, there are all of these LARS-related issues that need to be addressed in a timely fashion, and you need to be put in contact with the right kind of specialists and practitioners who can genuinely help you with whatever issues emerge. In addition you need to have some sort of plan for good diet and physical exercise that you can diligently follow.

NOTE: The type of comprehensive 5-year plan I'm referring to is the one called "SCP- Survivorship Care Plan" and which is being featured in a special session in the up-coming Call-on-Congress meeting:

Treatment Summaries and Survivorship Care Plans (TS/SCPs): Symptom Management and Surveillance
Session Presenter:
Andi Dwyer, University of Colorado
Director of Health Promotion, Fight Colorectal Cancer


How are colorectal cancer survivors supposed to manage their medical care after treatment ends? It is recommended by several professional cancer organizations that at completion of treatment, patients receive a summary of what treatments they have had in addition to a detailed plan of ongoing care from their providers. Did you leave with a clear plan? The truth is, a majority of patients are leaving with more confusion than clarity as it relates to their follow up and management post treatment. In this unique breakout session Andi will facilitate a discussion about the importance of survivorship care planning.

Lively, interactive discussions will cover:
• What is a TS/SCP
• The recommended follow-up care for colorectal cancer survivors
• Responsibilities of different providers (oncologist, primary care, etc.)
• Where to go for resources

Ref: https://5xlhc2qz20k3jc6dy3g31xb4-wpengine.netdna-ssl.com/wp-content/uploads/2017/11/2018-ConC-Breakout-Sessions.pdf

Lee
Posts: 5762
Joined: Sun Apr 16, 2006 4:09 pm

Re: Rectal cancer diagnose with isolated tumor cells (ITC)

Postby Lee » Fri Feb 02, 2018 5:42 pm

KathyLynn wrote:Hi All,
So after my second opinion, I waited for the oncologist to bring it up at the board
All agreed that I should not have any chemo or radiation
Kathy


Congratulations, since they were all on the same page, sounds like a win.

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 - 10 years and counting!

KathyLynn
Posts: 61
Joined: Thu Aug 31, 2017 3:40 pm
Location: Rock Hall, MD

Re: Rectal cancer diagnose with isolated tumor cells (ITC)

Postby KathyLynn » Fri Feb 02, 2018 6:45 pm

Thanks for all the information. I will definitely read up on all of this.
I was so excited when they told me that I didn’t need treatment, but now I still find myself worrying about that ITC.
One day at a time! I’m heading to see my grand kids in PA. They keep me busy and happy!

KathyLynn
8/2017. RC
11/27/2017. Robotic LAR. No chemo/rad
12/2017 Moderatley differentiated, 3.0 cm in greatest dimension
Macroscopic tumor perf: not identified. All margins of resection and proximal neg for tumor.
Lymphovascular and perineural invasion: not identified.
1/13/2018. T2N0M0 with isolated tumor cell (ITC)
7/2018. CEA 2.0. 10/18: 2.0. 1/19: 2.3

mpbser
Posts: 590
Joined: Wed Apr 19, 2017 11:52 am

Re: Rectal cancer diagnose with isolated tumor cells (ITC)

Postby mpbser » Fri Dec 07, 2018 5:33 pm

I found this thread by doing a search for "circulating tumor cells." I wanted to see what has been written about on the subject of testing for CTCs on the forum because I haven't, in the past year and one half of visiting this site, noticed anyone noting their CTC tests and results. I became very curious about this today because someone on a reality tv show I watch was recently diagnosed with Stage III CC. He had his colon resection and went to MD Anderson to discuss treatment. He decided against chemo but then on the episode I saw today, he heard from his oncologist who informed him that they detected circulating tumor cells in his blood and the recommendation to do chemo was repeated. I recall reading about CTCs when my husband was first diagnosed. Now I am very curious why CTC blood tests are not routinely done. If anyone would like to weigh in, it would be appreciated.

I'm going to go back to searching the forum and will try to see if this has been addressed.
Wife 4/17 Dx age 45
5/17 - Lap left hemi
Adenocarcinoma
5 x 4 x 1 cm
low grade
T3 N2b M1a
Stage IV A
lymph nodes: 9 of 54
8/17 Sub-total colectomy
2nd tumor 5.5 cm T1 N0
CEA: 1.4, 2.1, 1.5, 1.9, 1.9, 2.1, 2.1, 2.4, 1.7, 2.0
MSS/MSI-L
Lynch no; KRAS wild
Immunohistochemsistry: Normal MLH1, MSH2, MSH6, and PMS2
Tumor DNA variants: MTOR, APC, TP53
Liver left hepatectomy seg 4 1/31/18
5/18 NED

mpbser
Posts: 590
Joined: Wed Apr 19, 2017 11:52 am

Re: Rectal cancer diagnose with isolated tumor cells (ITC)

Postby mpbser » Fri Dec 07, 2018 6:02 pm

I just read this comment from a few years ago by rp1954: For quiescent circulating and adherent cell clusters, xeloda may not be the optimal oral maintenance drug, since it first needs to be metabolized by functioning tumor cells.

Ok, so does this mean that Xeloda did not work to kill my husband's circulating tumor cells because his four rounds of chemo only shrunk his liver tumor in half? He had liver surgery after chemo and then no mop up. I'm just LITTLE worried right now (understatement).
Wife 4/17 Dx age 45
5/17 - Lap left hemi
Adenocarcinoma
5 x 4 x 1 cm
low grade
T3 N2b M1a
Stage IV A
lymph nodes: 9 of 54
8/17 Sub-total colectomy
2nd tumor 5.5 cm T1 N0
CEA: 1.4, 2.1, 1.5, 1.9, 1.9, 2.1, 2.1, 2.4, 1.7, 2.0
MSS/MSI-L
Lynch no; KRAS wild
Immunohistochemsistry: Normal MLH1, MSH2, MSH6, and PMS2
Tumor DNA variants: MTOR, APC, TP53
Liver left hepatectomy seg 4 1/31/18
5/18 NED

mpbser
Posts: 590
Joined: Wed Apr 19, 2017 11:52 am

Re: Rectal cancer diagnose with isolated tumor cells (ITC)

Postby mpbser » Fri Dec 07, 2018 6:05 pm

Oh, wait, I forgot he did Xelox... The OX would have worked on the CTCs. Silly me. It's been a long week.
Wife 4/17 Dx age 45
5/17 - Lap left hemi
Adenocarcinoma
5 x 4 x 1 cm
low grade
T3 N2b M1a
Stage IV A
lymph nodes: 9 of 54
8/17 Sub-total colectomy
2nd tumor 5.5 cm T1 N0
CEA: 1.4, 2.1, 1.5, 1.9, 1.9, 2.1, 2.1, 2.4, 1.7, 2.0
MSS/MSI-L
Lynch no; KRAS wild
Immunohistochemsistry: Normal MLH1, MSH2, MSH6, and PMS2
Tumor DNA variants: MTOR, APC, TP53
Liver left hepatectomy seg 4 1/31/18
5/18 NED

KathyLynn
Posts: 61
Joined: Thu Aug 31, 2017 3:40 pm
Location: Rock Hall, MD

Re: Rectal cancer diagnose with isolated tumor cells (ITC)

Postby KathyLynn » Sat Dec 08, 2018 10:40 am

I’m not sure about CTC. They didn’t mention that. I had just 1 ITC that was found. I think they are two different things, but not sure.

KathyLynn
8/2017. RC
11/27/2017. Robotic LAR. No chemo/rad
12/2017 Moderatley differentiated, 3.0 cm in greatest dimension
Macroscopic tumor perf: not identified. All margins of resection and proximal neg for tumor.
Lymphovascular and perineural invasion: not identified.
1/13/2018. T2N0M0 with isolated tumor cell (ITC)
7/2018. CEA 2.0. 10/18: 2.0. 1/19: 2.3


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