Radiation during surgery

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steiconi
Posts: 115
Joined: Thu Jun 26, 2008 10:16 pm

Radiation during surgery

Postby steiconi » Mon Aug 20, 2018 11:10 am

After 12 years of struggling with the after effects of rectal cancer, I recently had everything south of my colostomy removed--rectum, anus, a bunch of woody necrotic tissue, and the fissure that has plagued me for years. Actually, Plan A was to clean out the nasty tissue and reverse the colostomy. I was disappointed but not surprised to wake up to Plan B.

Among the tissues removed, they found a few cancerous cells. No lymph nodes were affected. A PET scan showed no tumors, but there might be a few cancer cells left, since the surgeon wasn't looking for cancer.

The radiation oncologist I spoke with said he didn't think radiation would be effective in my case, since they wouldn't know where to aim. Since I've been told over the years that various problems I've had were due to or complicated by the radiation I had years ago, I said I didn't like the idea of doing radiation again.

So I was shocked when the tumor board (several surgeons and oncologists and such) recommended pre-adjutant radiation, plus surgery with radiation during surgery. This sounds crazy to me--they want to do random radiation to counter hypothetical cancer. That sounds like more problems down the road.

I'm very resistant to the idea, especially since I'm still having problems with complications from the surgery 2-1/2 months ago (multiple surgical drains, an open wound that requires packing, nerve damage to my hand.)

I feel like they are only looking at the disease, and not considering my opinions or quality of life. I even keep telling them I'm leaving in October, but they ignore me.

I suspect they think I'll do anything to survive cancer. But this is actually my fourth round of cancer--it doesn't scare me like the first time. And I'm tired of surgeries and treatments that cause new problems without resolving the old ones. I want to go have fun and travel. I want to enjoy a few years before I die, instead of spending the rest of my life in a medical morass.

So I'm disappointed in the results of the surgery, I'm in pain from the complications (and they're a constant nuisance as well), I'm tired of being poked and prodded, and I feel like they're not listening to me.

So I may not be in the best frame of mind to make life altering decisions.

Whaddya think? Anyone here had a similar experience? Words of wisdom?
I am not my disease.

Koreysue
Posts: 258
Joined: Mon Apr 30, 2018 2:36 pm

Re: Radiation during surgery

Postby Koreysue » Mon Aug 20, 2018 11:44 am

I’m sorry you are experiencing this. I’m just a year in and tire of the poking and prodding. I can imagine your are very tired of it. I don’t have much experience in this, but maybe just get one more opinion from a different cancer center?
Koreysue
Dx: 6/2017 stage 3 CC
Sigmoid, 2 nodes
CEA at dx: 6.1
Sigmoid Colectomy/folfox (last chemo (1/31/18)
CEA 4/2018: 2.4
CEA 7/2018: 3.7
Colonoscopy 8/18 clean
PET scan 8/20/18 NED
CEA 11/2018: 3.8
CEA 2/2019: 3.2
CT NED 6/18/19 / CEA : 3.4
CEA 10/21/19: 3.2
CEA 3/9/20: 3.8
CT NED /CEA 6/17/20: 3.8
CEA 11/4/20 4.6 <——— whyyyy? (will retest in a few weeks)
CT NED 12/1/20 CEA: 3.5
CEA 5/21 4.2
CEA 10/21 3.4
colonoscopy 10/21 10mm polyp
CEA 4/22 3.7
CEA 7/22 3.8
CEA 12/22 4
CEA 1/22 3.2 and NED 5yr scan

MissMolly
Posts: 645
Joined: Wed Jun 03, 2015 4:33 pm
Location: Portland, Ore

Re: Radiation during surgery

Postby MissMolly » Mon Aug 20, 2018 2:14 pm

Steniconi:
You know me as “Button” on the UOAA ostomy forum.

I pop into the Colon Club in memory of my beloved friend, NWGirl (Bella) and offer advice on ostomies to members here.

Have you considered connecting with Palliative Care?

I have fragile health. There is no “fix” and no “getting better” for the confluence of health issues that have redefined my life. By all practical assumptions, I should have already succumbed. I continue on.

Palliative Care is whole person care for someone with a serious, life-threatening health issue(s). It focuses on the entire person (physical, mental, and spiritual), your views of quality of life, and what is most important to you and your immediate family. It’s aim is to make the best of a less than ideal situation. To find meaning and purpose within the capacities that a person has. Pain control. Comfort. Procedures and treatment decisions are made with input from Palliative Care with a view toward what will benefit you (avoiding what may harm you) and that are in line with your expressed views and wishes.

Ex. There will be no routine mammograms for me. There will be no further surgeries - with the exception that I will entertain surgery for a hip fracture if that befalls me. I forgo less valuable specialist consultations that will only add to my problem list.

I have been on Palliative Care for 3 years. The experience has been life-affirming and beneficial. Services include, as needed: a Palliative Care MD, registered nurse, physical therapy, spiritual counselor, social worker, psychologist, nutritionist, specialist pharmacy. Services come to me, in the comfort of my own home. The Palliative Care team runs interference for me when I am hospitalized for inpatient care - avoiding intrusive, invasive testing and procedures that I no longer want.

Sometimes there comes the time when more medical intervention becomes more burdensome and adds to one’s discomfort, pain, and isolation that accompanies loss of health.

The Palliative Care model also provides 1:1 care for my immediate family members. Psychological counseling and ongoing support to address the stress and emotional wearing that they experience. The lives of my immediate family members are benefiting from my involvement with Palliative Care.

For anyone with a serious, prolonged, life-affecting health condition, Palliative Care can be a comforting and life enhancing care model. My life is better for Palliative Care. I am genuinely appreciative of being able to access this service.

Explore Palliative Care options/providers in your community. It may be the “medicine” that you need the most right now.
Karen
Dear friend to Bella Piazza, former Colon Club member (NWGirl).
I have a permanent ileostomy and offer advice on living with an ostomy - in loving remembrance of Bella
I am on Palliative Care for broad endocrine failure + Addison's disease + osteonecrosis of both hips/jaw + immunosuppression. I live a simple life due to frail health.

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steiconi
Posts: 115
Joined: Thu Jun 26, 2008 10:16 pm

Re: Radiation during surgery

Postby steiconi » Mon Aug 20, 2018 5:36 pm

Thanks, Karen.
I thought palliative care was an end of life thing, but this sounds like much more, and maybe what I need.
I'll look into it.

And thanks for the suggestion, Korysue!
Lee
I am not my disease.

MissMolly
Posts: 645
Joined: Wed Jun 03, 2015 4:33 pm
Location: Portland, Ore

Re: Radiation during surgery

Postby MissMolly » Mon Aug 20, 2018 7:23 pm

Stenocini:

Palliative Care is not end-of-life care.

This is valuable information for members on this board to know, as likely many individuals (and their immediate family) would benefit from the care model which is Palliative Care.

The basic criteria and definition of Palliative Care . . .

Palliative Care is designed to serve individuals with serious, life-threatening health conditions. It is oft equated with care and comfort. It is whole person care. It’s focus is less disease specific and more on how a serious health challenge affects the total of one’s physical, emotional, and spiritual well-being. The focus is less on “fixing” an ailment and more on supporting well-being by addressing pain and adverse symptoms (nausea, fatigue, dizziness, lower extremity edema, et.al). Palliative Care is a long-term commitment with the patient and immediate family. You can continue to receive active treatment for your health conditions.

What types of conditions are appropriate for Palliative Care? A person with COPD (pulmonary compromise), Parkinson’s disease, cancer, refractory Chron’s, Type 1 diabetes, Lupus, Multiple Sclerosis - to name a few.

Before Palliative Care, my existence seemed dominated by a laundry list of physicians who rarely coordinated with one another or knew what the other was doing. Going to a medical appointment was exhausting and took the better part of a day - having my mother drive me to the appointment, waiting in the waiting room, waiting in the exam room, seeing the physician, going to the lab for request blood draws/blood work, stopping by the pharmacy, driving home. I would be down-for-count for the next two days.

Palliative Care comes to me, providing care to me in the familiar surroundings of my home. A designated Palliative Care MD oversees ALL of my care and routinely communicates with my physician specialists. Treatment or evaluative tests/imaging studies decisions are made with collective input by Palliative Care with an eye on what value is expected to be added with the treatment. How will a proposed treatment impact the total of my other co-mingling conditions? If the potential benefit to be derived is nil, then I may opt not to proceed with a proposed treatment/study/imaging. I am at a personal stage where less is more. I want, for myself, less medical intervention. When I am hospitalized, Palliative Care monitors my hospital course daily and provides input and directions to the hospitalists assigned and specialty physicians who step in and out. I feel in excellent hands with Palliative Care providing oversight.

For anyone with ongoing pain, Palliative Care is a God send. The opiate crisis makes for a complex and highly charged environment to access prescription pain medication. Palliative Care has eased the burdens associated with accessing pain medication that I need.

I will be on Palliative Care until it is appropriate for me to transition to Hospice Care (end of life care).

Palliative Care has enabled me to live my best life possible given the constraints of my health. Palliative Care has allowed me to have a quality of life where I can continue to find meaning and purpose. They give me tools to adapt and adjust . . And to adapt and adjust, again. The greatest relief is in not having to explain myself to health professions over and over again. Palliative Care innately understands what it is to be unwell. I no longer have to explain myself. This, in itself, is amazingly freeing. I am more than the illnesses/conditions in my medical record. They are interested in me as the whole person that I am. They are dedicated to lessening distressing symptoms, pain, and emotional unrest that loss of health has imposed on me.
Palliative Care is all about finding the ways and means of eeking out a higher quality of life and a more peaceful body experience.

There is absolutely nothing to loose and much to be gained by opting-in to Palliative Care. I feel blessed to have access to Palliative Care.
Karen

boxhill
Posts: 789
Joined: Fri Apr 06, 2018 11:40 am

Re: Radiation during surgery

Postby boxhill » Tue Aug 21, 2018 5:16 am

I've never had radiation, since there is nothing to irradiate now, but given all of the side effects I've seen my husband suffer from targeted radiation after prostate cancer surgery, and all I've read about other people's post-radiation suffering, I would personally reject radiation with such a vague target and such questionable benefits.
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
5/20 MRI stable/NED
6/20 Stop Key
All MRIs NED

User avatar
steiconi
Posts: 115
Joined: Thu Jun 26, 2008 10:16 pm

Re: Radiation during surgery

Postby steiconi » Wed Aug 22, 2018 11:47 pm

boxhill wrote:I've never had radiation, since there is nothing to irradiate now, but given all of the side effects I've seen my husband suffer from targeted radiation after prostate cancer surgery, and all I've read about other people's post-radiation suffering, I would personally reject radiation with such a vague target and such questionable benefits.


Yeah. If I'd never had radiation, I probably wouldn't have developed the problems that led to this surgery.
I am not my disease.


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