Internal Iliac Node involvement??

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Punky44
Posts: 118
Joined: Mon Oct 01, 2018 4:29 pm

Internal Iliac Node involvement??

Postby Punky44 » Thu Oct 11, 2018 12:42 pm

I am hoping someone can help me understand our options.

My mom’s MRI revealed that she is a T3N2 but it also showed an enlarged lymph node at a distant site—the right internal iliac node. A PET scan will confirm but the doctor likely said it’s cancer and thus, stage IV.

They said because of this they want to switch the plan to total aggressive chemo (Folfox) and then chemo/radiation and then surgery. Before today, the order was the chemo/radiation, then surgery, then Folfox.

Is this because they basically think since the cells are at a distant site that they could be anywhere and that’s why chemo is first?

Does anyone think a second opinion is needed for this plan at this point or this is likely the standard plan in this situation?

A CT showed no lung or liver mets but this iliac node makes us a Stage IV—is it being in this node but not the liver/lungs better, worse or irrelevant?

Why can’t they remove this node?!

Has anyone ever had this node show enlarged and have it not be cancer? Or is this pretty obvious?

Please help me understand what I can do for her—I need to do something.
Caregiver to my amazing mom (68)
10/1/18 DX with rectal cancer; CEA 17
MRI/CT/PET puts staging at T3N2M0
Trying total neoadjuvant therapy—chemo first, then short course radiation, then surgery
11/5/18 started Folfox—3 down, 5 to go!

Me: 34, first colonoscopy 11/16/18—normal! Come back in 5 years.

retiredteacher
Posts: 96
Joined: Sat Oct 21, 2017 1:34 pm

Re: Internal Iliac Node involvement??

Postby retiredteacher » Thu Oct 11, 2018 3:44 pm

I know that this order of treatment has been looked at with more frequency recently - even being considered for Stage III if I am not mistaken. I can't answer your specific anatomical question, but it does sound to me like you have a very good team working on this for your mom. Others on this board have much more knowledge. As far as thinking about plans down the road, I was able to drive myself to radiation every day and could have driven myself to chemo as well - although the hubby drove me, he used that time to run errands in town. Went out of town a few days a couple times for surgery, but otherwise had chemo - radiation locally (about 45 minutes away) with good results. I was tired and didn't care about housework so much. To help your mom, you might think about helping her keeping the larder stocked and giving a hand with cleaning and laundry once she starts treatment. For yourself, do not panic. This is a super slow grower that shows with polyps first - I agree with your family that your anxiety may be tieing up your tummy right now. Staying calm and supportive is the best thing you can do right now for yourself and your entire family. My husband is a 13 yr CRC survivor, and a seven year SMALL cell lung cancer survivor (very scary.) Then mine this last year. We both handled full careers and travel schedules along the way. It's funny, you think everything has to come to a standstill during treatment - and things do change for awhile at least - normal gets "different" for awhile. Then before you know it, as patients, we are 12 or 18 months down road grumbling because we have to rake leaves or shampoo the dang carpet, not even realizing what a blessing it is! (lol speaking for myself.) You might think about seeking out some kind of sleeping aide - we need our sleep to handle the increased stresses, to think clearly, and to be as healthy and centered as possible. We did with the last two cancers and it was very helpful. Hang in there - this will take a year to work through. As others have said, stay off Dr. Google - medicine is doing amazing things with this disease both in the past and even better now. Warm wishes - hang in there!
RC, F, 63 at diagnosis, Sept. 2017
Adeno 6.3 - 7 cm tumor (PET) MSS, G2,
Est. T3N0M0 PET
2500 Cap/RT Oct/Nov18; 25 treatments
"Near complete metabolic response" PET Jan 2018
CEA 0.5 Oct. 2017, Jan. 2018, 0.6 Oct. 2018
MRI Feb. 2018 Presurg yT2 N0 12 cm from AV 3 cm
LAR Feb 20 yT1N0M0 0/21 G1 0.3 cm
CAPEOX March 2018, oxi and cap reduced to 80% at cycle 3
Completed 4 cycles CAPEOX; stopped due to gut issues, liver enzymes
Clear CT and colonoscopy November 2018. NED. :-)

retiredteacher
Posts: 96
Joined: Sat Oct 21, 2017 1:34 pm

Re: Internal Iliac Node involvement??

Postby retiredteacher » Thu Oct 11, 2018 3:52 pm

Me again, I know that feeling of needing to do something, anything. Does your mom normally oversee the holiday dinners? If so, you could step up and pinch hit for her? Under her supervision? Maybe others have ideas.
RC, F, 63 at diagnosis, Sept. 2017
Adeno 6.3 - 7 cm tumor (PET) MSS, G2,
Est. T3N0M0 PET
2500 Cap/RT Oct/Nov18; 25 treatments
"Near complete metabolic response" PET Jan 2018
CEA 0.5 Oct. 2017, Jan. 2018, 0.6 Oct. 2018
MRI Feb. 2018 Presurg yT2 N0 12 cm from AV 3 cm
LAR Feb 20 yT1N0M0 0/21 G1 0.3 cm
CAPEOX March 2018, oxi and cap reduced to 80% at cycle 3
Completed 4 cycles CAPEOX; stopped due to gut issues, liver enzymes
Clear CT and colonoscopy November 2018. NED. :-)

Punky44
Posts: 118
Joined: Mon Oct 01, 2018 4:29 pm

Re: Internal Iliac Node involvement??

Postby Punky44 » Thu Oct 11, 2018 4:54 pm

Thank you so much for your reply. I am amazed at the strength you and your spouse have to conquer two cancers. I am really trying to hang in there. Thank you for your suggestions for how I can help her.

I am just so perplexed by this “internal iliac node” = stage IV. From everything I have read (the latest published research, recommendations from the American Joint Committee on Cancer, links below) classifies internal iliac node involvement as regional, or stage III. I have a call in to clarify but this is concerning to me that this is “up for debate.” Wouldn’t this affect her course of treatment and decisions at surgery?


https://www.ncbi.nlm.nih.gov/m/pubmed/29998009/

https://www.ncbi.nlm.nih.gov/pmc/articl ... po=39.3204

https://pubs.rsna.org/doi/full/10.1148/ ... 2541090361
Caregiver to my amazing mom (68)
10/1/18 DX with rectal cancer; CEA 17
MRI/CT/PET puts staging at T3N2M0
Trying total neoadjuvant therapy—chemo first, then short course radiation, then surgery
11/5/18 started Folfox—3 down, 5 to go!

Me: 34, first colonoscopy 11/16/18—normal! Come back in 5 years.

retiredteacher
Posts: 96
Joined: Sat Oct 21, 2017 1:34 pm

Re: Internal Iliac Node involvement??

Postby retiredteacher » Thu Oct 11, 2018 6:28 pm

That is probably a good question for the oncologist. Sounds to me like they just want to switch to the most aggressive approach.
RC, F, 63 at diagnosis, Sept. 2017
Adeno 6.3 - 7 cm tumor (PET) MSS, G2,
Est. T3N0M0 PET
2500 Cap/RT Oct/Nov18; 25 treatments
"Near complete metabolic response" PET Jan 2018
CEA 0.5 Oct. 2017, Jan. 2018, 0.6 Oct. 2018
MRI Feb. 2018 Presurg yT2 N0 12 cm from AV 3 cm
LAR Feb 20 yT1N0M0 0/21 G1 0.3 cm
CAPEOX March 2018, oxi and cap reduced to 80% at cycle 3
Completed 4 cycles CAPEOX; stopped due to gut issues, liver enzymes
Clear CT and colonoscopy November 2018. NED. :-)

rp1954
Posts: 1390
Joined: Mon Jun 13, 2011 1:13 am

Re: Internal Iliac Node involvement??

Postby rp1954 » Fri Oct 12, 2018 12:26 am

The real issues are keeping the nodes contained, and destroying or removing them.

In the US traditionally this is "chemo forever" territory - chemo until the drs run out of protocols or chemo itself is too much for the patient to handle. However, like the article says, surgical removal of (limited numbers or a site with) LN (in Asia) improves survival. More aggressive forms of ADAPT for chemo with high potency supplements and other chemistry, make much more sense to me - essentially what we did until a second surgery in 2011 to remove the (para-aortic) LN, normally a fatal site.

Why? Because the mets never got a day or fraction thereof, without chemo and additional chemistry to prevent spread, before and after second surgery. Also oral chemo as a modified ADAPT approach was a lot nicer than normal chemo. And affordable. And flexible. The price is paying attention to more markers and stepping on them immunochemically when the cancer's pathways evolve.
watchful, active caregiver for stage IVb CC since early 2010. immuno"Chemo forever," for mCRC

Deb m
Posts: 443
Joined: Tue Jan 14, 2014 10:08 am

Re: Internal Iliac Node involvement??

Postby Deb m » Fri Oct 12, 2018 8:16 am

My husbands cancer was in his cecum. The PT scan before the surgery snowed enlarged nodes along the iliac chain which also lit up. When they did the surgery, they removed them along with his cecum and acceding colon. What was very Interestingly was that none of those nodes that were removed during surgery tested positive for cancer. Pathology showed nothing. We had a second opinion at MDA and they did their own pathology studies and slides on the nodes and they didn't find anything either. He ended up being stage 2bt4a. Because of the t4, he did folfox and is still ned 8 years later. He did have an elevated WBC before surgery so oncologist and surgeon say they were probably infected and that's why they lit up and were enlarged. You never know.

Hoping all goes well,

Deb

WarriorSpouse
Posts: 157
Joined: Tue Aug 16, 2016 9:02 pm

Re: Internal Iliac Node involvement??

Postby WarriorSpouse » Fri Oct 12, 2018 8:53 am

Sorry to read of what you are going through.

There are many here with lymphatic Stage IV treatment plans. You should use your search tool under "Quick Links" to learn from them.

If possible get a second opinion from a major cancer center and do not be afraid of an aggressive treatment plan.

All the best moving forward.
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

Punky44
Posts: 118
Joined: Mon Oct 01, 2018 4:29 pm

Re: Internal Iliac Node involvement??

Postby Punky44 » Fri Oct 12, 2018 12:31 pm

Thank you all for your replies.

I am still awaiting a call back from the surgeon for more explanation as to why they are staging her as a IV. Is this maybe just an issue of “staged as a III but treated like a IV?” Is this the classic case of “stage 3.5”?

Has anyone ever had something show enlarged on MRI but not light up on PET?

I also feel strongly that we need a second opinion regarding lateral pelvic node dissection. Seems it’s standard in Japan but usually not practiced here, yet I see several examples on this board of people getting them removed during the surgery stage.
Caregiver to my amazing mom (68)
10/1/18 DX with rectal cancer; CEA 17
MRI/CT/PET puts staging at T3N2M0
Trying total neoadjuvant therapy—chemo first, then short course radiation, then surgery
11/5/18 started Folfox—3 down, 5 to go!

Me: 34, first colonoscopy 11/16/18—normal! Come back in 5 years.

Brearmstrong
Posts: 69
Joined: Sun Mar 26, 2017 3:24 pm
Location: CT

Re: Internal Iliac Node involvement??

Postby Brearmstrong » Fri Oct 12, 2018 7:58 pm

Hi Punky, I am also sorry to hear what is going on. I am one of those Stage IV due to distant nodes that warriorspouse mentioned. In my case with the tumor in my cecum, my spread to para aortic nodes deemed me stage IV. I never had a PET scan before my initial surgery so it’s hard to know if it was hanging out there all along and started to grow after finishing folfox. My CT scan showed them slightly elevated but my CEA jumped a bit so Dr ordered a PET which lit up those darn nodes. I was told chemo for life, palliative care, but my surgeon said he was willing to try to remove them if I wanted to take the risk. I did 9 rounds folfiri but they only stayed stable so I asked to move up the surgery and the team agreed. I ended up having 8 nodes in that area removed and 5 were cancerous. They originally thought only 1-2 but nope... I have read that some believe with rectal cancer that the iliac area is all considered regional spread and some say outer iliac is distant, etc. either III or IV, the best bet is to find a surgeon who will take the risk! I will be on oral chemo for life or until I have another recurrence but right now I’ve got the best shot I can hope for! Keep pushing!!
45 F Jan 17 Mom 2 boys
tumor in appendix into colon
Muc Adeno 4cm
mod diff G2 T4aN2
nodes 8/50
CEA 4.6 after surgery < .05
KRAS G12D MSS
FOLFOX Apr-sep 17
Clean CT scan Jul 2017 lung nodule 4mm, clean CT oct 17, CEA 3.4, nov 17 CEA 8.1. May 18 2.3 Jul 18 1.0 oct 18 1.3
Oct 2017 clean CT
Nov 17 PET para aortic nodes uptake. Stage IV
Folfori w/avastin Dec 17 CEA 7.1
May 18- surgery to remove nodes- 5 positive. xeloda 2000mg/day
Aug 18-CT NED! Nov 18 CT clear, stay on Xeloda.

ValZen
Posts: 33
Joined: Fri Sep 08, 2017 8:16 am

Re: Internal Iliac Node involvement??

Postby ValZen » Mon Oct 15, 2018 12:48 pm

Hi Punky44, I was like your Mom and had a distant node. Very often when it's just 1-3 they can obliterate it with the chemo and radiation! I had one distant node as well and that's what happened. I had 4 rounds of Folfox up front, then 25 rounds of radiation, then 5 more rounds of Folfox. By the time I was done radiation the node was completely gone. After surgery I was told I was a T3N2M0. I asked if I was a stage 4 and they said it was "splitting hairs" because it was just the one node and they treated it and thought of it as a stage 3. I hope this provides some comfort! Each case is very unique - just as we all are. I'm hoping for a very positive outcome for your Mom!

Punky44
Posts: 118
Joined: Mon Oct 01, 2018 4:29 pm

Re: Internal Iliac Node involvement??

Postby Punky44 » Mon Oct 15, 2018 4:14 pm

Thank you very much ValZen! I will share this with my mom!
Caregiver to my amazing mom (68)
10/1/18 DX with rectal cancer; CEA 17
MRI/CT/PET puts staging at T3N2M0
Trying total neoadjuvant therapy—chemo first, then short course radiation, then surgery
11/5/18 started Folfox—3 down, 5 to go!

Me: 34, first colonoscopy 11/16/18—normal! Come back in 5 years.

jep
Posts: 92
Joined: Sun Jun 11, 2017 7:45 pm

Re: Internal Iliac Node involvement??

Postby jep » Mon Oct 15, 2018 9:12 pm

Brearmstrong wrote:Hi Punky, I am also sorry to hear what is going on. I am one of those Stage IV due to distant nodes that warriorspouse mentioned. In my case with the tumor in my cecum, my spread to para aortic nodes deemed me stage IV. I never had a PET scan before my initial surgery so it’s hard to know if it was hanging out there all along and started to grow after finishing folfox. My CT scan showed them slightly elevated but my CEA jumped a bit so Dr ordered a PET which lit up those darn nodes. I was told chemo for life, palliative care, but my surgeon said he was willing to try to remove them if I wanted to take the risk. I did 9 rounds folfiri but they only stayed stable so I asked to move up the surgery and the team agreed. I ended up having 8 nodes in that area removed and 5 were cancerous. They originally thought only 1-2 but nope... I have read that some believe with rectal cancer that the iliac area is all considered regional spread and some say outer iliac is distant, etc. either III or IV, the best bet is to find a surgeon who will take the risk! I will be on oral chemo for life or until I have another recurrence but right now I’ve got the best shot I can hope for! Keep pushing!!


My husband's swollen node came back positive...PET scan on Wednesday....his surgeon is hoping to get in there and remove it (or them?)....the stress and worry is overwhelming me and I feel for everyone on this board and for all of your friends and loved ones....
Husband DX Stage IV CC on May 16, 2017
47 years old
Tumor Location: recto-sigmoid
Tumor type: Adenocarcinoma
Tumor size: 7.4 cm
Tumor grade: G3
TNM code: T3N2M1
Positive lymph nodes: 8 out of 20
Baseline CEA value: .9
LVI: present
Perineural invasion: present
Surgical margins: clear (w/in microns)
Primary surgery type: LAR
Folfox (August 2017-January 2018)
Scope June '18 - CLEAR! - 2 polyps removed
PET Scan 10/17/18: 3 positive lymph nodes
Irinotecan + Vectobix (started in November 2018)

Punky44
Posts: 118
Joined: Mon Oct 01, 2018 4:29 pm

Re: Internal Iliac Node involvement??

Postby Punky44 » Mon Oct 15, 2018 10:17 pm

Praying for you and your husband Jep! I agree that worry and anxiety feel like they are eating me alive and the world has just stopped. I would give anything to feel “normal” again.
Caregiver to my amazing mom (68)
10/1/18 DX with rectal cancer; CEA 17
MRI/CT/PET puts staging at T3N2M0
Trying total neoadjuvant therapy—chemo first, then short course radiation, then surgery
11/5/18 started Folfox—3 down, 5 to go!

Me: 34, first colonoscopy 11/16/18—normal! Come back in 5 years.

Stewsbetty
Posts: 136
Joined: Thu Jul 14, 2016 7:08 am

Re: Internal Iliac Node involvement??

Postby Stewsbetty » Tue Oct 16, 2018 9:46 am

I had distant node involvement though at the time of surgery they weren’t sure if it was cancer or just reaction. I would definitely check to see if there is a chance at removing during surgery. Mine did not respond to chemo and they were too large by the time they were responded to for radiation. (Not all CRC is slow growing)
Luckily I was a candidate for immunotherapy which has dramatically shrunk the nodes.
From what I have read distant node involvement can be a sign of future spread so dealing with it all right from the beginning would be great.
Beth
42yo At diagnosis. Female in BC, Canada
Dx: CC ascending
Right Hemi colectomy 06/16 clear margins
Adenocarcinoma 6cm High Grade
pT3 pN2a Stage 3
10 out of 16 lymph involved
MSI-h, Kras mut, Braf wild
Finished chemo Feb. 2017
PET scan showing active area April 2017
July 2017 CT showing LN mass and spread to other LN
Stage 4
Aug 2017 failed Fofiri
Sept 2017 keytruda
Nov 2017 CT scans show significant shrinkage in tumours
Feb 2018 CT continued shrinkage
May 2018 CT shrinkage and stable spots


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