How long?

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hayleyo
Posts: 9
Joined: Sat Mar 11, 2017 11:27 am

How long?

Postby hayleyo » Tue Apr 25, 2017 1:58 am

Hi, Mum has now been told she is too frail to have her colon tumour removed. At present she is feeling no symptoms apart from being quite tired. She did ask what stage her tumour was, but no one will answer this question, she asked how long she has left but obviously this is a difficult question to answer. We know her tumour is a large mass around her bowel in a ring like structure and will possibly cause a blockage. It is difficult as we don't know if we are looking at weeks or months before she starts to feel unwell, we have booked a holiday and don't know whether we should cancel it. It is in July, we have no idea how she will be then. We have been told it is a slow growing tumour contained within the bowel, but she has lost so much weight and is only 6 stone (fully dressed.)
C Difficile 2007 ileostomy with fistula
Reversal 2009 (coke can and a half of colon left!)

Mother diagnosed colon cancer March 2017

User avatar
LPL
Posts: 282
Joined: Fri Apr 22, 2016 12:49 am
Location: Europe

Re: How long?

Postby LPL » Tue Apr 25, 2017 4:08 pm

hayleyo,
Sorry to hear that your mother is too frail for surgery.
You wrote:
She did ask what stage her tumour was, but no one will answer this question

I only have experience from my DH's cancer and as I understood it they could not really tell what stage until after surgery when they could look at the pathology. So maybe it is not that they do not want to answer? Maybe they can't?
Regarding vacation; In October I experienced an accident, fractured my knee, wrist and shoulder. I have been feeling very frail and I have for sure Not wanted to travel. Maybe your mother is not feeling like me? but if I were you I would check to be sure the trip can be cancelled at a late stage in case she is not feeling up to it physically.
All the best to your mother & you!
DH @ 65 DX 4/11/16 CC recto-sigmoid junction
Adenocarcenoma pt 35x15x9mm G3(biopsi) G1(surgical)
Mets 3 Liver resectable
T4aN1bM1a Stage IVa 2/9 LN
MSS, KRAS-mut G13D
CEA & CA19-9: 5/18 2.5 78 8/17 1.4 48 2/14/17 1.8 29
4 Folfox 6/15-7/30 (b4 liver surgery) 8 after
CT: 8/8 no change 3/27/17 NED for now :D
:!: Steroid induced hyperglycemia dx after 3chemo .. hospitalized, insulin -> Metformin
Surgeries (open):
3/18 Emergency colostomy 5/23 Primary+gallbl+colostomy reversal (+port) 9/01 Liver mets

Swirdfish
Posts: 257
Joined: Sun Jun 19, 2016 3:57 am

Re: How long?

Postby Swirdfish » Wed Apr 26, 2017 1:03 am

Hi,

I cant see why they cant give you a pre-stage (Clinical) as they do with rectal cancer, instead of a path staging which is done after surgery. Most rectal patients have a pre-staging before radiation, then on surgery they get their official staging. It may not be totally accurate, but should give an idea of spread and possible lymph node involvement. However this could lead to a good result or a bad result, and cause more worry.
06/2016 Went in for colonoscopy came out with a tumor. Age 35
12cm from verge at junction. Rectal cancer.
Clinical stage T3 NO MO
Temp illestomy
Completed 5FU and Radiation
LAR surgery planned 13 Oct 2016
Completed ULAR surgery 11-10-2016.
0/22 nodes
pT3 N0 M0 R1
Stage 2A

Pathology reviewed and changed
ypT3 N0 M0 R0

Started folfox 21-11-2016
5-4-17 NED
Reversal 12-4-17

PainInTheAss
Posts: 655
Joined: Tue Jul 02, 2013 3:08 am

Re: How long?

Postby PainInTheAss » Wed Apr 26, 2017 5:43 am

hayleyo wrote:Hi, Mum has now been told she is too frail to have her colon tumour removed. At present she is feeling no symptoms apart from being quite tired. She did ask what stage her tumour was, but no one will answer this question, she asked how long she has left but obviously this is a difficult question to answer. We know her tumour is a large mass around her bowel in a ring like structure and will possibly cause a blockage. It is difficult as we don't know if we are looking at weeks or months before she starts to feel unwell, we have booked a holiday and don't know whether we should cancel it. It is in July, we have no idea how she will be then. We have been told it is a slow growing tumour contained within the bowel, but she has lost so much weight and is only 6 stone (fully dressed.)


Have they done a CT or PET scan to rule out stage IV? Usually they can tell if lymph nodes are involved just from a scan (local lymph node involvement would be a stage III).

The size of the tumor does not determine stage. She could have a very large tumor and still be a stage I with a very positive prognosis.

For rectal cancer, they are doing presurgery chemo now to shrink the tumor before surgery. Some patients, around 20%, have the tumor completely die which is called a complete response. If they are not doing surgery, is chemo an option?

What does she want to do? They said my father was too frail for heart surgery, and he died about a month later. I almost wish now that he had done the surgery and died fighting to live rather than just giving up, but we did not know then that he would only be with us for another month. How long she has has everything to do with how much the disease has already progressed.
47yo single mom of 4 (24, 21, 18, 16) at Dx
6/13 - RC T4b IIIc 5LNs on PET CEA 5.4
8/13 - Finish chemorad
10/13 - APR/hyst+ovaries/perm colostomy 2/12 nodes+
6/14 - Finish Xelox 6 rds
1/15 - CT clear CEA 0.2
10/15 - CT/MRI clear CEA 0.7
4/16 - CT clear
10/16 - CT/MRI clear CEA 0.6
5/17 - PET clear? Follow up MRI to verify inflammation

hayleyo
Posts: 9
Joined: Sat Mar 11, 2017 11:27 am

Re: How long?

Postby hayleyo » Fri Jun 16, 2017 3:00 am

So sorry for not replying to your post which I have only just found. Mum has not been given a grade, even though we asked? At the moment she is having no treatment and is reasonably well. She had a little bleeding again a few days ago, she takes iron tablets to try and keep her level up. All she has had is a colonoscopy and MRI scan. She did have stomach pains last night and felt nauseous, this is the first time, I am not sure if it is related. Sometimes she had lower back pain. It​ feels like we are waiting for a ticking bomb to go off, every time she gets a twinge we worry. She has colon cancer, radiotherapy is not an option and she couldn't tolerate chemo when she had breast cancer. Thank you for your comments, I have turned the notifications on so I will not miss any in future.
C Difficile 2007 ileostomy with fistula
Reversal 2009 (coke can and a half of colon left!)

Mother diagnosed colon cancer March 2017


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