I don't know what to think or what to expect anymore

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

I don't know what to think or what to expect anymore

Postby star68 » Sun Mar 05, 2017 6:26 am

My mum(87 year old) was diagnosed with colorectal cancer stage III, adenocarcinoma with infiltration (tumor located upper rectum) last November. Last December she had a PET scan and they didn't see metastasis.

We saw the Digestive Doctor whom offered my mum an operation and permanent colostomy, but my mum refused the operation, besides she has other pathologies that would have only made the operation high risk, the digestive consultant agreed with our decision. The doctor as well said that because of her age and being unable to follow the protocol of having radiotherapy and chemotherapy previous to the operation there was a higher risk that a malignant cell could spread the cancer, so there was no guarantees that she would be cancer free after surgery.

Then we saw the oncologist that offered to prescribe low radiotherapy sessions to reduce the tumor and minimize the symptoms which was the best solution for her, it wouldn't be cured but her quality of life would be better and life expectancy higher.

So she started the radiotherapy sessions and on the 7th session she started having lower back pain, and within two days she couldn't move from bed. They gave us a few days to get better from the lumbago but the pain wasn't going away if anything it got worse. They suspended the Radiotherapy (because you cannot make them wait longer than two weeks) and my mum kept getting worse. So within four weeks from having my mum totally independent she has become totally dependent and bed ridden. We had an appointment yesterday with the oncologist, he said she needs palliative care to control the pain, he couldn't do a MRI because she wouldn't have been able to sit still for 30 minutes, so he things the pain could come from the tumor or maybe not but when he check her recent scans, he said that there was an thickening of the rectum wall that he things it could be pressing the nerves and causing the pain. The scans were done in November, December, so if the thickening of the rectum was shown then how comes she never had any pain until the radiotherapy started? Could have been a coincidence? The oncologist said if wasn't triggered by the radiotherapy but all he said is she needs palliative care all we need to manage the pain and we will see but that my mum is 87 and at that age things can get complicated quite easily. That doesn't explain to me why my mum has gone down hill since the radiotherapy sessions? Has anybody had similar experience to mine?
I don't know what to thing or what to expect anymore. We trusted the doctors and my mum before the radiotherapy sessions she was independent, since the sessions she has become 100% dependent, they never told us that was a risk. Very upset and disappointed with the medical team. I thought my mum will recover but now me and my family are loosing hope. I need some advice.

michelle c
Posts: 1929
Joined: Wed Dec 02, 2009 3:58 am

Re: I don't know what to think or what to expect anymore

Postby michelle c » Sun Mar 05, 2017 7:05 am

I am so sorry that this is happening to your mum and you. It must be so hard when you don't have proper answers and to see your mum deteriorate must be heartbreaking. I hope that someone can offer you the advice you're hoping for, and I hope that things improve for your mum.
May 25 2009 Dx with CC (sigmoid colon) 2 days after my 44th b'day
CEA prior to surgery 4.7
Jun 3 2009 LAR - Stage III 3/10 lymph nodes
Jul 6 - Dec 10 2009 - 12 cycles FOLFIRI
Genetic testing - inconclusive for Lynch
Jul 2012 port removed & hernia repair

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

Re: I don't know what to think or what to expect anymore

Postby KElizabeth » Sun Mar 05, 2017 10:47 am

I'm sorry to hear that your mom is in so much pain. I know from my time caring for my mom after her stroke and through hospice how scary and stressful it is to watch and live through. I don't have any advice for managing the cancer symptoms beyond what you've probably been offered. It's good to let the doctor know what is and is not working to try and find the right balance being pain free and lucid.
My regets with my mom are how stressed I was and how much worry she had to see. But Iam glad I treated her to the best of everything I could while she was sick. The softest blankets, the best and comfiest undergarments, and lovely lotions and sent helped to provide her with comfort.

~Elizabeth
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

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

Re: I don't know what to think or what to expect anymore

Postby DarknessEmbraced » Sun Mar 05, 2017 1:33 pm

I'm sorry your mother is in so much pain!*hugs* I hope that her pain will be controlled soon and that you will get answers!*hugs*
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: I don't know what to think or what to expect anymore

Postby star68 » Sun Mar 05, 2017 4:26 pm

Thank you so much for the support, keeping my spirits up x

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

Re: I don't know what to think or what to expect anymore

Postby Lee » Sun Mar 05, 2017 6:08 pm

So very sorry for what has happened to your mom. If she is not already, get her on palliative care. Radiation can be rough sometimes. Maybe it did have some effect on her, butt as her age, other things could also be contributing to her current situation.

Make your mom as comfortable as possible. Let her spend time with her family surrounded by love.

I hope they are able to get her pain under control.

May I ask, where are you? USA, Canada or some other part of the world.

I hope there is a turning point where she is getting pain free and is able to walk some and get some independence back.

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!

mct
Posts: 35
Joined: Sat Nov 12, 2016 10:08 pm

Re: I don't know what to think or what to expect anymore

Postby mct » Mon Mar 06, 2017 3:56 am

I'm sorry that your mother is in so much pain. It must terrible for you to see and not be able to help. I have upper rectal cancer also, and did not have pain until I started radiation. This may not apply to your mom at all, but thought I'd share in case it can be of use. After only 2 treatments, I had severe pain. The doctor thought it might be inflammation causing nerve pain. He prescribed a cortisone medication which completely removed the pain. I hope your mom finds relief.
Breast cancer 2009
Rectal cancer Nov 2016, T3N0M0, CEA - 10.3
28 days rads/Xeloda - finished Jan 19 2017
Surgery ULAR Mar 17, 2017
Anastomotic leak, surgery for ileostomy April 4, 2017
May 2017 CEA - 2


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