Surgery is over!

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KathyLynn
Posts: 38
Joined: Thu Aug 31, 2017 3:40 pm
Facebook Username: Hillcrestkathy

Re: Surgery is over!

Postby KathyLynn » Sat Jan 13, 2018 12:11 pm

O Stoma Mia wrote:
KathyLynn wrote:I have a question, my report shows:
T2N0M0
Question is.....a comment on my report..

Since the focus of adenocarioma identified in one of fifteen lymph nodes is less than 0.2 mm in size, it is considered N0 for staging purposes"

Very confusing to me

Doctor suggested to see an oncologist to see what he may want to do with this

Anyone had this result?

Thanks
KathyLynn

I haven't had this result, but I think that this is covered in the detailed instructions that accompany the colorectal cancer pathology template. In that document they say that a single, small isolated .tumor deposit in a lymph node.has no prognostic value. In particular, in these cases they recommend coding this as pN0
CS3.06e Recording small tumour deposits in lymph nodes needs to take account of the following issues:
* Isolated tumour cells are defined as “single malignant cells or a few tumour cells in microclusters”, not more than 0.2 mm in diameter, present within a lymph node. They may be single or multiple. They may be visible in H&E stained sections or detected by immunohistochemistry. The literature suggests that the finding of such cells is not a marker of an adverse prognosis for the patient.

"...The AJCC TNM 7th edition recommends that cases in which isolated tumour cells are the only form of nodal involvement should be classified as pN0, although the presence of the isolated tumour cells should be noted. Optional designation as pN0(i+) may be used in this situation, although a free-text description might provide clearer communication.


There are several scientific articles that they cite to support their recommendation to code the result this way.

If you want to see the source articles, let me know and I will try to dig up the references.

Essentially, what they are saying is that, all things considered, it is better to code this as T2N0M0 than T2N1M0, to avoid over-treating the patient and causing more harm than good. But you should discuss this with your oncologist to get a medical perspective on this.
.
.


So my oncologist seems to think that I should have Rad/chemo. The radiation scares me since I just had surgery. My surgeon is totally against radiation. Don’t you think this would be considered over treated?
Oncologist will bring it up next week at the board meeting.
Any thoughts?
Anyone have radiation after LARS?
I’m not having any issues with my bowels, I don’t want to have issues if it is not needed.

Thanks!
KathyLynn
59 yr old. Mom of 3 daughters.
7/2017. Started taking probiotics. 2 weeks later blood in stool
8/2017. Colonoscopy. Rectal Cancer
9/2017. PET/CT. MRI. T2 or T3. NO MO
10/2017. Endo Ultrasound. T2 NO MO
11/27/2017. Robotic LAR.
12/2017. NED.
1/13/2018. T2N0M0 with isolated tumor cells (ITC)
In one lymph node removed at surgery
Less than .1mm

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

Re: Surgery is over!

Postby susie0915 » Sat Jan 13, 2018 12:37 pm

I had the chemo/radiation before surgery so not sure. How have you been doing since surgery? Why does the oncologist think you need radiation? Maybe chemo only. I'm not sure. I thought the purpose of radiation for me was to shrink tumor, since yours was already taken out, I don't know. But I do know there are some here that have done radiation after surgery.
58 yrs old Dx @ 55
5/15 DX T3N0MO/ 2A
6/15 5 wks chemo/rad
7/15 sigmoidoscopy/scar tissue left
8/15 Pet scan NED
9/15 LAR
0/24 nodes
10/15 Bowel blockage. surgery,early ileo rev, c-diff inf :(
12/15 6 rds of xelox
5/16 Clear CT lung scarring/inflammation
9/16 clear colonoscopy
4/17 CT 4mm lung nod onc feels scar tissue
7/17 no change lung nodule
10/17 Clear pel/abd CT
11/17 CEA<.5
1/18 CT/Lung no change in 4mm nodule or scarring/inflammation

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O Stoma Mia
Posts: 976
Joined: Sat Jun 22, 2013 6:29 am

Re: Surgery is over!

Postby O Stoma Mia » Sat Jan 13, 2018 1:21 pm

KathyLynn wrote:... Anyone have radiation after LAR?
I’m not having any issues with my bowels, I don’t want to have issues if it is not needed

Yes, I had 5 weeks of chemo/radiation after my LAR -- but my situation was very different. I had a T4b tumor that had invaded several adjacent organs. The surgeon insisted that I have radiation. He said that this was the best way to guarantee that no live cancer cells remained in the invaded area.

KathyLynn
Posts: 38
Joined: Thu Aug 31, 2017 3:40 pm
Facebook Username: Hillcrestkathy

Re: Surgery is over!

Postby KathyLynn » Sat Jan 13, 2018 1:33 pm

susie0915 wrote:I had the chemo/radiation before surgery so not sure. How have you been doing since surgery? Why does the oncologist think you need radiation? Maybe chemo only. I'm not sure. I thought the purpose of radiation for me was to shrink tumor, since yours was already taken out, I don't know. But I do know there are some here that have done radiation after surgery.


I’m doing great
I had those isolated tumor cells (ITC) which they don’t even change to N1. In 1 lymph node
But the reason they don’t change it, is so you’re not over treated.
The oncologist even said that I’m probably cured but because of those darn ITC, it’s questionable
He also said chemo does not work without radiation....
Have you heard this before?

Thanks!!
59 yr old. Mom of 3 daughters.
7/2017. Started taking probiotics. 2 weeks later blood in stool
8/2017. Colonoscopy. Rectal Cancer
9/2017. PET/CT. MRI. T2 or T3. NO MO
10/2017. Endo Ultrasound. T2 NO MO
11/27/2017. Robotic LAR.
12/2017. NED.
1/13/2018. T2N0M0 with isolated tumor cells (ITC)
In one lymph node removed at surgery
Less than .1mm

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susie0915
Posts: 648
Joined: Wed Aug 02, 2017 8:17 am
Facebook Username: Susan DeGrazia Hostetter
Location: Michigan

Re: Surgery is over!

Postby susie0915 » Sat Jan 13, 2018 1:39 pm

Hmm. I don't know. Someone else here might know better. I'm sorry I don't know. So for that one lymph node he wants to do radiation and says chemo won't work without it? Is that only so for the cells you have? Doesn't make sense to me. Chemo alone works for other cancer cells.
58 yrs old Dx @ 55
5/15 DX T3N0MO/ 2A
6/15 5 wks chemo/rad
7/15 sigmoidoscopy/scar tissue left
8/15 Pet scan NED
9/15 LAR
0/24 nodes
10/15 Bowel blockage. surgery,early ileo rev, c-diff inf :(
12/15 6 rds of xelox
5/16 Clear CT lung scarring/inflammation
9/16 clear colonoscopy
4/17 CT 4mm lung nod onc feels scar tissue
7/17 no change lung nodule
10/17 Clear pel/abd CT
11/17 CEA<.5
1/18 CT/Lung no change in 4mm nodule or scarring/inflammation

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O Stoma Mia
Posts: 976
Joined: Sat Jun 22, 2013 6:29 am

Re: Surgery is over!

Postby O Stoma Mia » Sat Jan 13, 2018 1:44 pm

KathyLynn wrote:... He also said chemo does not work without radiation....
Have you heard this before? ...

I have never heard this before. Are you sure that this is what he said?

Caat55
Posts: 29
Joined: Sat Dec 23, 2017 6:01 pm

Re: Surgery is over!

Postby Caat55 » Sat Jan 13, 2018 2:25 pm

Rikimaroo wrote:Why didn't you need a temporary ileostomy? Where was your tumor located? My tumor is about 12CM from the anal verge and my doc is saying he wants to give me a temp for healing purpose, but I am kind of wondering why you didn't get one? Being that high up a direct anastomosis for me should be all that is needed. But I guess my doc is being cautious and I am ok with that, but if not necessary then I shouldn't have too.

If you don't mind me asking who was your doctor and what hospital?

I am young also and tissue very good. I hear mix messages from another doctor telling me he is not sure why I would need a temp ileo other then for the purpose of a 2nd surgery. Just not sure.

Rikimaroo

Congrats! I have same question. Mine as well. Surgery scheduled for 31st.
55 y.o. Female
Dx 9/26/17 RCStage 3
Completed 33 rad. Tx, xeolda
MRI scheduled 1/4/18
Surgery scheduled1/31/18

KathyLynn
Posts: 38
Joined: Thu Aug 31, 2017 3:40 pm
Facebook Username: Hillcrestkathy

Re: Surgery is over!

Postby KathyLynn » Sat Jan 13, 2018 2:45 pm

O Stoma Mia wrote:
KathyLynn wrote:... He also said chemo does not work without radiation....
Have you heard this before? ...

I have never heard this before. Are you sure that this is what he said?


Yes! My husband was there with me
And the lymph node was one they took out, it’s not in me
59 yr old. Mom of 3 daughters.
7/2017. Started taking probiotics. 2 weeks later blood in stool
8/2017. Colonoscopy. Rectal Cancer
9/2017. PET/CT. MRI. T2 or T3. NO MO
10/2017. Endo Ultrasound. T2 NO MO
11/27/2017. Robotic LAR.
12/2017. NED.
1/13/2018. T2N0M0 with isolated tumor cells (ITC)
In one lymph node removed at surgery
Less than .1mm

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O Stoma Mia
Posts: 976
Joined: Sat Jun 22, 2013 6:29 am

Re: Surgery is over!

Postby O Stoma Mia » Sat Jan 13, 2018 10:35 pm

KathyLynn wrote:
O Stoma Mia wrote:
KathyLynn wrote:... He also said chemo does not work without radiation....
Have you heard this before? ...

I have never heard this before. Are you sure that this is what he said?


Yes! My husband was there with me
And the lymph node was one they took out, it’s not in me

I don't know what to think. It still doesn't make sense to me for someone to say that chemo doesn't work without radiation.

Basil
Posts: 228
Joined: Thu Mar 16, 2017 12:33 pm

Re: Surgery is over!

Postby Basil » Sun Jan 14, 2018 12:39 am

KathyLynn,

Just my own experience, but I had six rounds of FOLFOX instead of radiation, with the plan being six more rounds of chemo after surgery. I had a path complete response after surgery and my surgeon cancelled the last six rounds of chemo.

My case was presented to “conference” after surgery
and it was unanimous “no more chemo”. My surgeon was the chief at MDANDERSON.
40 y/o male, kids 6&9
Dx 3/16/17, rectal cancer S3,t3,n1,m0
PROSPCT trial (FOLFOX in lieu of chemorad)
FOLFOX 4/5/17 - 6/26/17
LAR 7/31/17, temp ileo
pathological complete response
Adjuvant chemo cancelled (IDEA Study)
Ileo reversed 9/25/17
NED

KathyLynn
Posts: 38
Joined: Thu Aug 31, 2017 3:40 pm
Facebook Username: Hillcrestkathy

Re: Surgery is over!

Postby KathyLynn » Sun Jan 14, 2018 10:36 pm

I will touch base with you all soon
I’m getting a second opinion for sure
However, my sister in law just past away, so probably next week for another appointment
I’m pretty sure he said that I would need radiation for the chemo to work. I maybe wrong, my head spins when I go into a doctors office after having this diagnose
Thank you all, you guys are the best!

I’ll be in touch soon

KathyLynn
59 yr old. Mom of 3 daughters.
7/2017. Started taking probiotics. 2 weeks later blood in stool
8/2017. Colonoscopy. Rectal Cancer
9/2017. PET/CT. MRI. T2 or T3. NO MO
10/2017. Endo Ultrasound. T2 NO MO
11/27/2017. Robotic LAR.
12/2017. NED.
1/13/2018. T2N0M0 with isolated tumor cells (ITC)
In one lymph node removed at surgery
Less than .1mm

User avatar
O Stoma Mia
Posts: 976
Joined: Sat Jun 22, 2013 6:29 am

Re: Surgery is over!

Postby O Stoma Mia » Mon Jan 15, 2018 3:10 am

KathyLynn wrote:...Im pretty sure he said that I would need radiation for the chemo to work. I maybe wrong, my head spins when I go into a doctors office after having this diagnosis.

The doctor might have said the reverse, namely, "You need low-dose chemo for radiation to work well" -- which is true.

About the doctor's insistence on using radiation, I would have two questions for him:

Question 1. Where would the external radiation beam be focused? i.e., where exactly do you think there might still be some live cancer cells? Note: The Radiation Oncologist would have to program the machine to deliver the radiation at precise locations, and these locations have to be in the pelvic / rectal area. They don't do radiation higher up in the colon area because of the danger of damaging nearby non-cancerous, vital areas.

Question 2. What evidence do you have that there might be live cancer cells in these particular locations? The area where they did find such tumor cells has already been removed by surgery, and it was only one isolated instance. What additional evidence is there that other such areas still exist, and where would they be located, given that the surgery has already removed 15 lymph nodes and (presumably) the entire mesorectum?

As you can see, I'm having some trouble following the surgeon's logic for insisting on radiation. From my (layman's) point of view, for T2N0M0, there would be a very low likelihood that any cancer cells were left behind in the pelvic region if they in fact did a competent Total Mesorectal Excision (TME) -- which is the current standard of care for cancers of the rectum.

KathyLynn
Posts: 38
Joined: Thu Aug 31, 2017 3:40 pm
Facebook Username: Hillcrestkathy

Re: Surgery is over!

Postby KathyLynn » Mon Jan 15, 2018 8:10 am

I think you’re correct with this
I had it turned around, in order for the radiation to work I would need low dose chemo
I feel he wants to treat me as N1. Which I feel would be over treated for me. As N0, right?
But I thought that chemo was all that I would need
Does chemo work without radiation?
I’m so scared to have radiation after my surgery

Thank you for all this information
I will definitely ask these questions.
I think I should have a second opinion also

I’ll be in touch

Thanks so much
KathyLynn
59 yr old. Mom of 3 daughters.
7/2017. Started taking probiotics. 2 weeks later blood in stool
8/2017. Colonoscopy. Rectal Cancer
9/2017. PET/CT. MRI. T2 or T3. NO MO
10/2017. Endo Ultrasound. T2 NO MO
11/27/2017. Robotic LAR.
12/2017. NED.
1/13/2018. T2N0M0 with isolated tumor cells (ITC)
In one lymph node removed at surgery
Less than .1mm

User avatar
O Stoma Mia
Posts: 976
Joined: Sat Jun 22, 2013 6:29 am

Re: Surgery is over!

Postby O Stoma Mia » Mon Jan 15, 2018 8:29 am

KathyLynn wrote:...
But I thought that chemo was all that I would need
Does chemo work without radiation?

I think chemo can work reasonably well without radiation. You can check the results of the PROSPECT trial that Basil was on. In that trial, FOLFOX chemo was done pre-surgery with great success, but I think that the logic would be more-or-less the same for post-surgery chemo.

There are many people here who have opted for Xeloda monotherapy as a post-surgery regimen, with apparent success. This approach gives a fair amount of protection and at the same time avoids the dangers of radiation, and it avoids the dangers of oxaliplatin-induced peripheral neuropathy commonly associated with with XELOX (CAPEOX), and FOLFOX adjuvant therapy regimens.

KathyLynn
Posts: 38
Joined: Thu Aug 31, 2017 3:40 pm
Facebook Username: Hillcrestkathy

Re: Surgery is over!

Postby KathyLynn » Fri Jan 19, 2018 10:44 am

I had my appointment with the radiologist this morning
He said that I could have radiation with chemo, standard for rectal cancer because of this ITC
Or, I can just have them keep an eye on me with three month appointments.
It’s my call. It is really easy to say no treatments, I’m done! But I’m not sure
I am waiting for John Hopkins to call me for a second option. They have my records
So, again, I’ll be in touch.....
Should I start a new post to see if there is any members that had ITC. And what treatment they had?

Thanks
KathyLynn
59 yr old. Mom of 3 daughters.
7/2017. Started taking probiotics. 2 weeks later blood in stool
8/2017. Colonoscopy. Rectal Cancer
9/2017. PET/CT. MRI. T2 or T3. NO MO
10/2017. Endo Ultrasound. T2 NO MO
11/27/2017. Robotic LAR.
12/2017. NED.
1/13/2018. T2N0M0 with isolated tumor cells (ITC)
In one lymph node removed at surgery
Less than .1mm


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