Google is scary right now need help !

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worriedson714
Posts: 28
Joined: Mon May 03, 2021 4:27 pm
Facebook Username: jasonbeck

Google is scary right now need help !

Postby worriedson714 » Fri Jun 04, 2021 1:42 pm

Hello ,
" Mostly necrotic tumor consistent with recurrent adenocarcinoma " that was the biopsy results which at first I thought could be a little good news I mean dead cells in a tumor has to be good right ? Oncologist says no that it's common to see necrotic tumors with cancer which sucks big time and then old Dr Google is really scary today saying that it means the tumor is outgrowing it's blood supply and that means it's aggressive with poor prognosis . Which the oncologist didn't say none of and since we got to wait until the middle and end of the month for more appointments with radiation oncologist I am freaking out . If it's so aggressive why are they waiting so long to start treatment ? It really makes no sense to me .
So looking for someone who knows about or has had a necrotic tumor to try to get more information about what it really means as far as my dad's cancer . Should I be pushing to speed things up ? Is it common to see necrotic tumors with rectal cancer ? Any help really at this point I will take I got to stop googling stuff online feel like I am losing it .
My Dad was DX - March 2019 stage 3 rectal cancer
Folfox Chemo - 6/ 2019 threw 10/2019
Radiation - 4/ 2019 threw 5/2019
12/ 2019 - Abdominal Perineal Resection - Cancer left and permanent colostomy
watching and waiting
9/2021- Surgery to remove prostate and bladder- Permanent Urostomy still cancer left
Watching and waiting
5/28/2021 - Positive Biopsy Mostly necrotic tumor
6/14/2021 - Sepsis with obstructive uropathy needed nephrostomy tube
Awaiting Start lifelong chemo
7/19/2021 Kidney infection

catstaff
Posts: 101
Joined: Wed Mar 03, 2021 11:37 am

Re: Google is scary right now need help !

Postby catstaff » Sat Jun 05, 2021 5:01 am

Partially necrotic tumors are common because a lot of them outgrow their blood supply. Also the new blood vessels they grow are usually leaky and don't deliver blood very well. That's one thing Avastin (bevacizumab) does--it reduces the leakage and normalizes the blood flow, which is actually a good thing since it means the other chemo (it is not used alone) can access the tumor better.

I don't recall when this tumor was found on your father but it was fairly large, correct? My husband has a tumor in a very similar location, against the sacrum. I am going to try to talk them into using radiation on the remnant. His surgeon said that there are a lot of blood vessels there so surgery isn't an option, but radiation works. However, it puts the small intestine at risk. His tumor has shrunk dramatically on folfiri/bev which should make radiation safer. Have they discussed trying to shrink his tumor before radiation?
D/H Dx 10/2019 RC age 61
Clinical T4bN2M1a (common iliac and para-aortic lymph nodes)
MSS KRAS G12D
CRT 11/19-1/20 FOLFOX 3/20-7/20
Pelvic exenteration w/LAR 8/20
ypT4bN0Mx G3 0/14 nodes LVI not seen PNI-
CEA 10/19:20, 1/20-11/20:1.6, 4.3, 3.4, 2.7, 2/21:9.0 3/21:18,40 4/21:28,19, 5/21:13.3,8.6
PET 3/21 recurrence in distal nodes, L5 vertebra, pelvis
FOLFIRI+bev 3/21-

worriedson714
Posts: 28
Joined: Mon May 03, 2021 4:27 pm
Facebook Username: jasonbeck

Re: Google is scary right now need help !

Postby worriedson714 » Sat Jun 05, 2021 3:16 pm

catstaff wrote:Partially necrotic tumors are common because a lot of them outgrow their blood supply. Also the new blood vessels they grow are usually leaky and don't deliver blood very well. That's one thing Avastin (bevacizumab) does--it reduces the leakage and normalizes the blood flow, which is actually a good thing since it means the other chemo (it is not used alone) can access the tumor better.

I don't recall when this tumor was found on your father but it was fairly large, correct? My husband has a tumor in a very similar location, against the sacrum. I am going to try to talk them into using radiation on the remnant. His surgeon said that there are a lot of blood vessels there so surgery isn't an option, but radiation works. However, it puts the small intestine at risk. His tumor has shrunk dramatically on folfiri/bev which should make radiation safer. Have they discussed trying to shrink his tumor before radiation?


My dad's tumor was microscopic left over from surgery however in watching and waiting after for five months to be sure there was some left it has grown to 6 cm . Is a necrotic tumor more aggressive then since it is outgrowing it's out blood supply ? Also leaky that seems bad to have leaky blood vessels does that cause complications ? They have discussed doing chemo and radiation together for my dad they also say the small bowel is at risk . But that's a good idea I may bring up doing chemo first to try and shrink it .
My Dad was DX - March 2019 stage 3 rectal cancer
Folfox Chemo - 6/ 2019 threw 10/2019
Radiation - 4/ 2019 threw 5/2019
12/ 2019 - Abdominal Perineal Resection - Cancer left and permanent colostomy
watching and waiting
9/2021- Surgery to remove prostate and bladder- Permanent Urostomy still cancer left
Watching and waiting
5/28/2021 - Positive Biopsy Mostly necrotic tumor
6/14/2021 - Sepsis with obstructive uropathy needed nephrostomy tube
Awaiting Start lifelong chemo
7/19/2021 Kidney infection

catstaff
Posts: 101
Joined: Wed Mar 03, 2021 11:37 am

Re: Google is scary right now need help !

Postby catstaff » Sat Jun 05, 2021 5:59 pm

How did they know there was a microscopic leftover? Margins weren't clear? Margins were supposedly clear on my husband but he still got a similar recurrence, though his may be a lymph node. I am not sure whether it automatically means it's aggressive if it outgrows its blood supply. I suppose it does indicate it's growing rapidly; but nearly all large tumors will have some necrotic areas.

Leaky vessels may be bad but it's what you get; the vessels a tumor induces to grow are abnormal.

There was no particular plan to shrink my husband's mets for radiation because I don't think there was a plan to use radiation on them. I am just going to try to argue to get rid of the largest ones entirely. The others were very small lymph-node mets, too small to biopsy or to be obvious on CT. I am hoping they can be managed with chemo.
D/H Dx 10/2019 RC age 61
Clinical T4bN2M1a (common iliac and para-aortic lymph nodes)
MSS KRAS G12D
CRT 11/19-1/20 FOLFOX 3/20-7/20
Pelvic exenteration w/LAR 8/20
ypT4bN0Mx G3 0/14 nodes LVI not seen PNI-
CEA 10/19:20, 1/20-11/20:1.6, 4.3, 3.4, 2.7, 2/21:9.0 3/21:18,40 4/21:28,19, 5/21:13.3,8.6
PET 3/21 recurrence in distal nodes, L5 vertebra, pelvis
FOLFIRI+bev 3/21-

worriedson714
Posts: 28
Joined: Mon May 03, 2021 4:27 pm
Facebook Username: jasonbeck

Re: Google is scary right now need help !

Postby worriedson714 » Sat Jun 05, 2021 6:44 pm

catstaff wrote:How did they know there was a microscopic leftover? Margins weren't clear? Margins were supposedly clear on my husband but he still got a similar recurrence, though his may be a lymph node. I am not sure whether it automatically means it's aggressive if it outgrows its blood supply. I suppose it does indicate it's growing rapidly; but nearly all large tumors will have some necrotic areas.

Leaky vessels may be bad but it's what you get; the vessels a tumor induces to grow are abnormal.

There was no particular plan to shrink my husband's mets for radiation because I don't think there was a plan to use radiation on them. I am just going to try to argue to get rid of the largest ones entirely. The others were very small lymph-node mets, too small to biopsy or to be obvious on CT. I am hoping they can be managed with chemo.


Surgeon said she left some in cause it was up against the tailbone so she was sure there was some left on the tailbone but this spot isn't on the tailbone exactly but she says it was the spot she left alot of questions still . Margins showed it was right up to the margin so yeah I guess they where not clear . My dad's is still one tumor no mets yet but his liver numbers are out of whack so I suppose that could mean he does have a met not sure about that yet . Another question is your husband's considered stage 4 then ? There not sure what to make of my dad's cause it's still the original spot but it's up towards the abdominal lining . Oncologist actually told me there not sure if it's considered stage 4 or not it's hard to say .
My Dad was DX - March 2019 stage 3 rectal cancer
Folfox Chemo - 6/ 2019 threw 10/2019
Radiation - 4/ 2019 threw 5/2019
12/ 2019 - Abdominal Perineal Resection - Cancer left and permanent colostomy
watching and waiting
9/2021- Surgery to remove prostate and bladder- Permanent Urostomy still cancer left
Watching and waiting
5/28/2021 - Positive Biopsy Mostly necrotic tumor
6/14/2021 - Sepsis with obstructive uropathy needed nephrostomy tube
Awaiting Start lifelong chemo
7/19/2021 Kidney infection

catstaff
Posts: 101
Joined: Wed Mar 03, 2021 11:37 am

Re: Google is scary right now need help !

Postby catstaff » Sat Jun 05, 2021 7:12 pm

My husband is Stage IV due to the lymph-node spread. The source of the tumor near the sacrum is unclear; it could be a lymph node. He had clear margins for the surgical specimen.

As far as I know local recurrences are not considered Stage IV but they have their own problems, and anything left behind can seed further spread. But it may not spread beyond that.
D/H Dx 10/2019 RC age 61
Clinical T4bN2M1a (common iliac and para-aortic lymph nodes)
MSS KRAS G12D
CRT 11/19-1/20 FOLFOX 3/20-7/20
Pelvic exenteration w/LAR 8/20
ypT4bN0Mx G3 0/14 nodes LVI not seen PNI-
CEA 10/19:20, 1/20-11/20:1.6, 4.3, 3.4, 2.7, 2/21:9.0 3/21:18,40 4/21:28,19, 5/21:13.3,8.6
PET 3/21 recurrence in distal nodes, L5 vertebra, pelvis
FOLFIRI+bev 3/21-

worriedson714
Posts: 28
Joined: Mon May 03, 2021 4:27 pm
Facebook Username: jasonbeck

Re: Google is scary right now need help !

Postby worriedson714 » Mon Jun 07, 2021 1:03 pm

Thanks for the replies catstaff just wish there was more info about there about necrotic tumors alot of info says it is a sign of aggressive cancer that usually spreads . But all the info I can find doesn't say anything about rectal cancer it says other kinds . And my dad's cancer hasn't spread and oncologist says it seems to be relatively slow growing . Since his next appointments to set up treatment aren't until 16th and 25th then I assume treatment will start after that I am worried about the waiting cause his liver numbers are already up hoping that's from his steatosis .
My Dad was DX - March 2019 stage 3 rectal cancer
Folfox Chemo - 6/ 2019 threw 10/2019
Radiation - 4/ 2019 threw 5/2019
12/ 2019 - Abdominal Perineal Resection - Cancer left and permanent colostomy
watching and waiting
9/2021- Surgery to remove prostate and bladder- Permanent Urostomy still cancer left
Watching and waiting
5/28/2021 - Positive Biopsy Mostly necrotic tumor
6/14/2021 - Sepsis with obstructive uropathy needed nephrostomy tube
Awaiting Start lifelong chemo
7/19/2021 Kidney infection

boxhill
Posts: 730
Joined: Fri Apr 06, 2018 11:40 am

Re: Google is scary right now need help !

Postby boxhill » Wed Jun 09, 2021 3:30 pm

worriedson, if you would do a signature it would really help the rest of us follow what is going on with your father. :)
F, 64 at DX CRC Stage IV
3/17/18 blockage, r hemi
11 of 25 LN,5 mesentery nodes
5mm liver met
pT3 pN2b pM1
BRAF wild, KRAS G12D
dMMR, MSI-H
5/18 FOLFOX
7/18 and 11/18 CT NED
12/18 MRI 5mm liver mass, 2 LNs in porta hepatis
12/31/18 Keytruda
6/19 Multiphasic CT LNs normal, Liver stable
6/28/19 Pause Key, predisone for joint pain
7/31/19 Restart Key
9/19 CT stable
Pain: all fails but Celebrex
12/23/19 CT stable
5/19 MRI stable/NED
Stop Key
All MRIs NED

worriedson714
Posts: 28
Joined: Mon May 03, 2021 4:27 pm
Facebook Username: jasonbeck

Re: Google is scary right now need help !

Postby worriedson714 » Wed Jun 09, 2021 4:27 pm

boxhill wrote:worriedson, if you would do a signature it would really help the rest of us follow what is going on with your father. :)


No idea how to do that lol can you explain how please ?
My Dad was DX - March 2019 stage 3 rectal cancer
Folfox Chemo - 6/ 2019 threw 10/2019
Radiation - 4/ 2019 threw 5/2019
12/ 2019 - Abdominal Perineal Resection - Cancer left and permanent colostomy
watching and waiting
9/2021- Surgery to remove prostate and bladder- Permanent Urostomy still cancer left
Watching and waiting
5/28/2021 - Positive Biopsy Mostly necrotic tumor
6/14/2021 - Sepsis with obstructive uropathy needed nephrostomy tube
Awaiting Start lifelong chemo
7/19/2021 Kidney infection

Claudine
Posts: 538
Joined: Tue Mar 12, 2019 2:41 pm
Location: Montana

Re: Google is scary right now need help !

Postby Claudine » Wed Jun 09, 2021 4:54 pm

Go to your use control panel, under Profile, there's an "Edit signature" tab :)
Wife of Dx 04/18 (51 yo). MSS, KRAS G12A
No primary (involuted?)
Lytic tumor L4 vertebrae, EBRT 04/18, SBRT 02/19
Resect small intestine 05/18 (no cancer - Crohn's)
Failed adjuvant Xelox
Folfiri + Avastin 03/19 to 01/20
6.7 cm left adrenal mass 03/19, successful resection 02/20
CEA since 03/19: low 3.2, now 81.1
Scan 03/19: Multiple small lung nodules, now gone/calcified
PET 04/20 uptake by L4
L3-L4-L5 fusion surgery and partial corpectomy 05/20
Scan 06/17/2021: stable

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Green Tea
Posts: 421
Joined: Mon Oct 24, 2016 10:48 am

Re: Google is scary right now need help !

Postby Green Tea » Wed Jun 09, 2021 9:40 pm


Jannine
Posts: 197
Joined: Wed Jun 20, 2018 7:46 am
Location: Maryland, USA

Re: Google is scary right now need help !

Postby Jannine » Mon Jun 14, 2021 1:43 pm

I don't think there's a tumor classification for necrotic, so I'm not sure that it's a super important distinction from a clinical standpoint.

My colon cancer tumor was necrotic, but I only know that because I read the full surgeon's report; it was buried in the body of the report. It hasn't been mentioned anywhere else.
DX: sigmoid colon cancer 5/2018. 48 F
laparoscopic sigmoid resection (24 cm removed); no stoma.
7.5cm adenocarcinoma -- mod. diff.
1 noncontiguous tumor deposit removed; 0/31 lymph nodes
T3 pN1c M0
5/18 before surgery, CEA 11.2
6/18 began FOLFOX
7/18: CEA 1.9; added neulasta post infusion
9/18: CEA 2.8
10/18: 25% chemo reduction
11/18: CEA 1.8
7/19 CT scan clear

User avatar
beach sunrise
Posts: 498
Joined: Thu Mar 05, 2020 7:14 pm

Re: Google is scary right now need help !

Postby beach sunrise » Mon Jun 14, 2021 11:41 pm

Jannine, thank you for mentioning the surgery report. It slips my mind every time when appt comes around. I wrote it down this time to get it.
8/19 RC CEA 82.6 T3N0M0
Neoadj 5FU/rad 6 wk
High dose IVC 1 1/2 wks before surgery. Continue still twice a week
Surg 1/20 APR - margins T4bN1a IIIC G2 MSI- 1/20 LN+ LVI+ PNI-
pre cea 24/post 5.9
FOLFOX
7 rds 6-10 CEA 11.4 No more
7/20 CEA 11.1, 8.8
8/20 CEA 7.8
9/20 CEA 8.8, 9, 8.6
10/20 CEA 8.1
11/20 CEA 8's
12/20 CEA 8's & 9's
ADAPT+++ TM drug
MHL1+
PMS2+
MSH2+
MSH6+
POLD1 , KRAS Q61H
Chem-sens test NCI "Test failed, neo adj CR worked. Not enough ca cells to test"


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