My elderly mum passed away

Please feel free to read, share your thoughts, your stories and connect with others!
star68
Posts: 23
Joined: Tue Nov 22, 2016 4:57 am

My elderly mum passed away

Postby star68 » Fri Mar 24, 2017 3:19 am

Hello everyone,

Sadly my mum passed away from color rectal cancer. For people that never read my post, my mum was an independent 87 year old, she was diagnose with stage III colo rectal cancer in October. Then they did all the tests and said there was no metastasis. Oncologist decided to do low dose of radiotherapy treatment for four weeks.
By the 7th session she started with low back pain which to begin with the radiotherapist said it was an isolated back ache not related to the radiotherapy, but the pain wasn't going away and medications were not strong enough to relieve the pain. After two weeks of no improvement the radiotherapist cancels the sessions because she had to be reassessed by the oncologist. We went to the oncologist appointment, my mum in a wheelchair (withing two weeks she became totally dependent) begging the doctor to take her pain away. The doctor refers her to palliative care, we asked all the questions whether radiotherapy treatment triggered the pain, he said no, and if it there was a possibility that she had metastasis, he said perhaps but they were not going to check, his priority was to relieve the pain. We had the palliative care doctor's coming a week after that, after two days of treatment when my mum's pain was mostly gone my mum dies suddenly from heart failure. It is extremely hard for us to comprehend why did that happened. The doctors tell us that it was unexpected but she had a heart condition and all the stress she had with the pain until it was properly controlled put a strain in the heart. We weren't prepared for that. I asked if the strong pain was metastasis, and they say most probably, but we have no evidence because they didn't scan since last December, so we didn't know but the symptoms she had with the strong pain that was moving to the hips and neck maybe made the doctor's think that she had metastasis.

My doubts are if we didn't give radiotherapy perhaps she would still be alive, my sisters and I are so upset over this we feel betrayed by the doctors, we put all our trust on them and follow their advice and my mum started deteriorating since the radiotherapy. As well how comes she didn't have metastasis in December and the PET scan was done on the 28th of December 2016 and she has metastasis of the bones (not by test evidence but by symptoms) by the 10th of February as soon as she starts radiotherapy treatment?

The doctors say it's nothing to do with the radiotherapy, but all I know is that my mum was well before treatment, has someone gone through the same or similar experience.

I would like to hear your opinions on the subject to put my mind at rest.

Thank you for reading my post.

User avatar
Maia
Posts: 2443
Joined: Fri Aug 24, 2012 8:00 am

Re: My elderly mum passed away

Postby Maia » Fri Mar 24, 2017 9:29 am

Star... I'm so sorry. You, your family, were so careful and loving regarding your mom.
I'd say that, sadly, this is the way cancer is, sometimes (not always). Everything seems stable and sometimes, all change in weeks or days.

I've been in a similar position than you, with my friend for whom I came to the forum. She was being treated for lung mets, ended up in hospital with an emergency craneotomy for a brain met.
(And here I wrote a long story and later deleted it... : ) The point of my story is that of course many times there is malpractice but also many times (maybe most times, sadly) doctors have not way to really predict how people will react to treatments, when and how fast the disease will spread (yes, scans might not show the disease and it's visible in the next scan)... If you did your best (which is the case here!), and given your mom's age and she had a heart condition, maybe you'll be able to feel that her heart coming to a rest was a peaceful way to depart, without the pain that sometimes comes from bone mets (if that was the case).
But these are words and the pain you feel is probably physical, right now, so just a hug would be better. Feel yourself hugged, please ((star))

KElizabeth
Posts: 400
Joined: Sat Oct 31, 2015 12:41 pm
Facebook Username: KElizabeth
Location: Omaha

Re: My elderly mum passed away

Postby KElizabeth » Fri Mar 24, 2017 6:00 pm

I'm very sorry to hear of your mother's passing and the pain she had before it.
I wish you strength for the healing journey you have ahead.
Female age 39- ,2 teens.
Colon Cancer - DX March 2013
Age 34 at DX - Stage III B
Resection surgery -May 2013
FOLFOX - June, 2013 to Sept, 2013
5FU plus leukavorin Sept, 2013 to Dec, 2013
METs liver and lungs discovered Sept, 2015
KRAS - MSS
FOLFIRI plus Avastin - Sept, 2015 - July 2017
Durvalumab and Cediranib Sept 2017 Dec 17
FOLFOX with desensitization protocol - current

User avatar
LPL
Posts: 651
Joined: Fri Apr 22, 2016 12:49 am
Location: Europe

Re: My elderly mum passed away

Postby LPL » Fri Mar 24, 2017 6:59 pm

star68,
I'm So Sorry for your loss!
Maia wrote:
... And here I wrote a long story and later deleted it... : )

I could have done the same :(
My friend & soul mate is not here anymore due to Lung cancer and I miss her SO Much !!!
I still have many questions regarding her treatment and what happened to her??
But I have realized that I need to let that go.. and instead Celebrate the luck I had to have known her <3
At many occations lately, I have felt that she is still with me :)
I hope that you will soon only(!) feel the warmth of your mother's memory, that not this questions about 'What? What if?' will occupy your mind.
Wishing you all the best /LPL
DH @ 65 DX 4/11/16 CC recto-sigmoid junction
Adenocarcenoma 35x15x9mm G3(biopsi) G1(surgical)
Mets 3 Liver resectable
T4aN1bM1a 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->Jan-19 mets to lung NED again Oct-19 :)
:!: Steroid induced hyperglycemia dx after 3chemo
Surgeries 2016: 3/18 Emergency colostomy
5/23 Primary+gallbl+stoma reversal+port 9/1 Liver mets
RFA 2019: Feb & Oct lung mets

Steph20021
Posts: 553
Joined: Sat Dec 27, 2014 4:58 pm
Location: Ontario, Canada

Re: My elderly mum passed away

Postby Steph20021 » Sat Mar 25, 2017 2:12 am

I'm sorry for the loss of your mother. I can tell from your post you loved her very much. You did all you could do for her in supporting her. Take care of yourself now.
DX 1/31/14 @ 33- SPS-T4a(invades visceral peri), N2a(6/106 LN), M1a(ovary) (Stage 4a) MSS; BRAF V600E
2/1/14-subtotal col, lost R ovary, temp ileo
3/14-9/14- folfox; sepsis
11/14-CT/PET: L ovary met, pelvic met, (?)ghost liver met(?)
12/14-folfiri -13 rds kept me stable from 3/15-6/15
8/15-HIPEC, NED
09/15- cea 0.9
05/16- recurrence in abdo wall and lymph nodes
01/17- pulmonary embolism
02/17- 1 wk radiation to abdo wall
08/16- on folfiri
01/18-folfox
11/18- Beacon trial-encorafenib & cetuximab

PainInTheAss
Posts: 673
Joined: Tue Jul 02, 2013 3:08 am

Re: My elderly mum passed away

Postby PainInTheAss » Sat Mar 25, 2017 6:44 am

I'm so sorry for your loss.

I know for myself it was almost impossible to get an additional pet scan after my first one even with my oncologist doing an appeal. Their reluctance to rescan her was probably because of the difficulty in getting insurance to approve it, not because they just didn't want to. It's very difficult to get pet scans approved after diagnosis.

When I first joined the forum, I read about a woman in her 30s that had successful treatment and was NED for over 5 years, but treatment left her with severe tailbone pain. There was no cancer. They even told her that there was a crack in her tailbone because of the radiation. She ended up having to go to pain management to try to find some sort of solution because the pain was unbearable. She had difficulty finding a solution to her severe pain for years. It's most likely that your mom had weak bones due to her age and the radiation had a very strong effect on her bones. This is very, very unusual.

It is standard practice to do radiation for rectal cancer. Your doctors were offering standard practice which they would do for any patient. There was no way for them to tell that it would have affected her bones this way. Colorectal cancer grows very slowly so if she did not have any cancer showing on the pet scan at the end of December it's very unlikely that it was cancer causing the pain, especially during radiation which would've been killing any cancer that was present.

They most likely were hoping that the radiation with shrink the tumor and there would be no need for surgery. Surgery would've been much more painful and stressful on her heart, and if she couldn't survive the pain from the bone pain, it's very unlikely she would have survived the pain recovering from surgery. Chemo also is stressful and some people die just from one infusion. If there was cancer in her bones, the remedy would have been radiation anyway.

If you had known the radiation would affect her bones this way, the only other real option would've been to just let the cancer progress which would've become very painful very quickly as well. My pain from my cancer was absolutely intolerable at diagnosis.

My father passed away in January at 73 because he was unable to survive the surgery he needed to live. It sounded to me at the time like the doctors just didn't want to do the surgery, but I don't question the doctors because my brother is a doctor and was in constant communication with the doctors that were caring for him. You don't have that luxury, and it's caused you to second guess the doctors and think they made a mistake. There's no way to tell ahead of time how a patient will react to treatment.

You are likely in shock and having difficulty wrapping your mind around her passing since it was sudden. Part of shock is to replay events over and over to see if there could have been a different outcome if things had been done differently. This is a normal process when grieving a sudden loss. Eventually, you will be able to accept that her heart was too weak to survive cancer treatment, and you will be thankful for the years you did have with her.

Once again, I'm so sorry for your loss.
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

canadiandaughter
Posts: 676
Joined: Sun Aug 17, 2014 11:19 am

Re: My elderly mum passed away

Postby canadiandaughter » Sat Mar 25, 2017 11:00 am

I am so sorry for your loss. I lost my father in January. He was bit younger than your mother. He had cancer in his liver, lungs and colon. He was on chemo for almost 2.5 years. He developed a bladder infection in November and never really recovered from it. His issues were NOT directly cancer related. He ended up getting another scan to be sure and they found a very small tumor in his brain, and he got radiation for that, but had no effects from it. We chose to go ahead with the radiation as his cancer was small enough that the doctors felt he should have some time left and we did not want the brain tumor to cause him any additional problems. I strongly feel that what happened with him is that everything finally caught up with him. He fought hard and was still very active up until the bladder infection. He had a previous heart condition and type 2 diabetes on top of the cancer. In the end, his heart just stopped. He only had morphine for just over a week prior to his passing and really only the last 3 days consistently. I truly feel your pain, it hurts so much to loose a parent and we do question everything that they went through and were the right choices made for them. I think it is human nature to question. For us, I feel very blessed to have had my dad an extra 2 years as I feel without treatment, we would have lost him sooner. I do not feel that the radiation did anything to him in the end good or bad. It was a decision we made with him and his oncologists. I have a cousin who has had many radiation treatments for his cancer that has metastasized, he told us that he didnt feel any effects from it until his 20th treatment. That made us feel better hoping that dad didnt suffer any ill effects from his 3 treatments. I know every person/treatment is different, but we took comfort in his experience. I hope you can find some peace here from what others are sharing with you. Please take time for yourself. Loosing a parent is a lot harder then I ever dreamed it would be. I had this crazy notion that being dad had lived a good life this wouldnt be so hard, wow, was I wrong!! I spent a lot of time with my dad the last few years, more so since he was diagnosed, and I am very thankful for that, but on the flip side, the bond that we developed has made his death a lot harder on me, but I would do it all again!! The pain is worth it!
DD to 81 year old father
dx 24/07/14 iv cc mets liver/lung
folifiri started 19/07/14
shrinkage of all mets
growth in the liver,started folfox/avastin 80% 13/01/16
reduced to 70% due to side effects 27/01/16
First scan on folfox shows shrinkage in lungs, but liver just stable
6 rounds of vectibix-fail. 3cm growth and new spots showing Waiting for panel recommendations
At peace January 8, 2017

fumaros
Posts: 273
Joined: Sat Jul 02, 2016 10:26 pm
Location: Syracuse, NY
Contact:

Re: My elderly mum passed away

Postby fumaros » Sun Mar 26, 2017 7:44 am

I am really sorry for your loss and the pain you feel and the questions you have unanswered. It is hard to to speculate and dwell on the "what ifs". But you tried to make the best decisions for your mom. And for your doctors, most conventional doctors follow rigid standards of care and would decide to treat in a very standard manner which it seems they did. Cancer, stress and high emotions can be very damaging to the heart, even for the loved ones who don't have the primary ailment. I hope you find closure and comfort in this time of sadness.
Diagnosed 4/8/16, age 29
Colectomy 4/20/16
Stage III, T4bN1 Tumor 7x6.5x2. Muscinous Adenocarcinoma with SRC features
2/16 lymph nodes
Stage IV, Peri mets 5/2019
CEA 4/14/16 - 16.8
CEA 6/2/16 - 1.9
CEA 6/17/16 - 0.87, 7/16 - 1.33, 12/16 - 1.14, 4/17 - 0.6, 7/17 - 0.5, 10/17 - 0.9, 3/19 -5.8, 4/19 -10
FOLFOX began 6/24/16 - 11/25/16, FOLFIRI - 5/10/19
10 round FOLFOX, 2 round 5-FU & Leucovorin, 1 round FOLFIRI
MRI & CT 8/16 - NED, CT 12/16 - 10/17 - NED

Lee
Posts: 6207
Joined: Sun Apr 16, 2006 4:09 pm

Re: My elderly mum passed away

Postby Lee » Sun Mar 26, 2017 2:22 pm

Please accept my condolences on the passing of your mother.

I don't have any words to offer on what happened, you've been given some good advice already.

All the best to you and your family during this most difficult time,

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 - 16 years and counting!

DarknessEmbraced
Posts: 3816
Joined: Sat Nov 01, 2014 4:54 pm
Facebook Username: Riann Fletcher
Location: New Brunswick, Canada

Re: My elderly mum passed away

Postby DarknessEmbraced » Sun Mar 26, 2017 2:47 pm

Star,


I'm so sorry for the loss of your mother and all the pain she went through!*hugs* The unanswered questions would make it even harder. My deepest condolences to you and your family.
Diagnosed 10/28/14, age 36
Colon Resection 11/20/14, LAR (no illeo)
Stage 2a colon cancer, T3NOMO
Lymph-vascular invasion undetermined
0/22 lymph nodes
No chemo, no radiation
Clear Colonoscopy 04/29/15
NED 10/20/15
Ischemic Colitis 01/21/16
NED 11/10/16
CT Scan moved up due to high CEA 08/21/17
NED 09/25/17
NED 12/21/18
Clear colonoscopy 09/23/19
Clear 5 year scans 11/21/19- Considered cured! :)

star68
Posts: 23
Joined: Tue Nov 22, 2016 4:57 am

Re: My elderly mum passed away

Postby star68 » Mon Mar 27, 2017 3:53 am

Thank you everyone for your support and condolences. You have been a great help making me understand my doubts about this terrible illness.
I am slowly coming to terms with the death of my mum, it's going to be hard, we are never prepared when it comes, even though I was seeing the cancer association psychologist and he helped me to deal with the situation at the time I think I was fooling myself all the way, I had images of my mum getting better and taking her out on a wheelchair and enjoying being with her, in my mind I had a lot of positiveness I wanted to remain strong for my mum and rescue her from this horrible situation, making her believe that she was going to be ok, I wished I was more realistic with the situation perhaps it would have been easier to accept her dying.
Thanks again for being so supporting in this difficult time.

Best wishes to everyone x

TXLiz
Posts: 249
Joined: Thu Sep 22, 2016 3:31 pm

Re: My elderly mum passed away

Postby TXLiz » Thu Mar 30, 2017 10:12 pm

So sorry you lost your dear mother.
Vomiting and blockage 9/19/16 46 y F
R hemi colectomy 9/20/16
Stage 3 B CRC, located in cecum
3 out of 16 lymph nodes positive
perineural invasion/lymphovascular invasion
infiltrating, mod differentiated adenocarcinoma with a mucinous component
separate tumor nodules present in pericolonic adipose tissue
MSI-high
Baseline PET scan clear 9/16 CEA 0.5
FOLFOX 10/16- 3/17
April 16th, CT scan clear. CEA 1.1
Lynch "inconclusive"
Colonoscopy 10/5/2017 clear


Return to “Colon Talk - Colon cancer (colorectal cancer) support forum”



Who is online

Users browsing this forum: No registered users and 111 guests