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Treatment or no treatment?
WendyIdz.
1 Posts

** just to be clear I'm just looking at every option and no treatment is part of that, I'm also terminal. I still need to talk to the “team” to see what I'm looking at timewise. I haven't made any decisions yet. sorry I have stage 4 anal cancer that's metastasized to my liver.

Hello I'm just wondering if anyone has decided not to do treatment? I might agree to he radiation but I think I'll pass on the chemo. I really don't want my time left to be filled with clinic appointments hooked up to chemo getting sick.

12 Replies
ACH2015
2344 Posts

@WendyIdz.

If I may provide some information here regarding recommended treatment. I will use my experience.

I was diagnosed with Stage IV cancer. As the treatment path was made, I was recommended to do chemo (to shrink and kill the tumors prior to surgery) , then surgery to remove the tumors, then radiation to mop up and kill off any stray cancer cells not already dealt with in chemo and surgery.

Even though I went through all of that, I had a recurrence, resulting in failed immunotherapy and a 4th surgery. Since then I get regular CT scans to monitor.

I'd suggest you speak with your oncologist to determine how chemo plays into the recommended treatment plan. Normally they give us percentages of value with each treatment provided. For example surgery and radiation are meant to be curative, and chemo will add another (example) 5% reduction in the chance of recurrence.

I've always said our first shot at battling cancer is our best shot, so make sure you understand the implications of not doing chemotherapy as part of the recommended treatment plan.

Hope this helps you in the decision making process.

ACH2015

@WendyIdz. When I was first diagnosed I had my surgery first then chemo (which included Herceptin) but didn't need radiation. There is a lot of advances in the medical field, it's not your grandma's chemo any more. My iv chemo included Carboplatin and Docetaxel plus Herceptin. I took oral medication for side effects which included Ondansetron, Dexamethasone and injections of Grastofil. I got my chemo every 3 weeks for a total of 6 times. Then I continued with Herceptin alone for 11 times. One week of side-effects then two weeks of recovery. After you've had chemo at least once, you will get to know what is your worst day and be able to plan for it the next time. I usually got my chemo on Tuesday's and my worst day was on the Saturday. I never vomited, I actually gained weight. I even worked during most of my chemo and I work in a busy grocery store, produce department.

Initially I had a lumpectomy (left breast) and was diagnosed with DCIS then I was sent for a MRI and a second, larger tumor was found. I had a mastectomy with an expander placement surgery (left breast) and was diagnosed with triple positive IDC. I was in my 50's when I was first diagnosed.

I was told surgery removes the plant and chemo removes any seeds that were left behind.

CandiceRG
68 Posts

@WendyIdz. I am still doing chemo for HL and hopeful that this will be all I need but I have also entertained what I would do if I need more treatments. The stem cell transplant scares me the most, it's a tough journey. I honestly don't know if I could handle it. But I'm also practical and worry that if I didn't agree to all recommended treatments and died, what would happen to my life insurance? There are so many scenarios. I would try to talk to a therapist who understands your local policies 💕

Good advice to talk to your oncologist. I completed radiation and chemotherapy . It wasn’t easy and I did suffer with side effects, but I am still here enjoying life.

if I had to do it over again, I would say yes without any hesitation. I had triple negative stage 3 breast cancer. Ask the cancer team about long term effects. My local cancer agency has a nursing line that I found helpful.

wishing you all the best. Be informed!
JoeG
26 Posts

@WendyIdz.
Hello. OMG!! I'm so happy you even asked that question. I also have been thinking the same. My oncologist had told me that if ever my cancer comes back, that there would be a possibility of it being chemo again to treat it. If I'd take it, it would be my fourth time going through chemo and I don't think my body can take anymore and I same as you don't want to go through being hooked up to machines and all being sick with no anergy to spare. I hope and this goes for you also that you can talk with your oncologist about other treatment plans.

Hope you get good results and be able to not get hooked up by the machines. Keep us updated.

Essjay
2050 Posts

@WendyIdz. it is a lot to take in when we are told our treatment plan. I too didn’t want chemo but I had aggressive triple negative breast cancer and at 49 at diagnosis taking a year out for treatment seemed like a good investment. Chemo wasn’t as bad as I expected at all. It did take me more than a year to feel fully recovered after it all.

I think your concerns are completely valid and if I was diagnosed in my mid-70’s I probably wouldn’t do chemo for the reasons you give.
I would ask your oncologist if your treatment is expected to be curative and What the chances of recurrence are for you before you make a decision…

How are you doing today?

@WendyIdz.
Hello and welcome. I am glad you asked this question. It definitely comes up from time to time. You don't mention in your post about type or stage of cancer so that could make the difference for you.

I'm going to copy what I recently wrote to another member wondering about taking a treatment or not:

Many of us are faced with decisions during our treatment. When we have the knowledge of risks vs benefits then we can make the best decision for us.

You will find that some will be okay with a 25 % risk of recurrance to avoid more treatment, whereas others will do everything they can ( I am that someone ) to reduce the risk. If you can decide what kind of person you are - are you the person that will take the risk and move on or the person that will wonder if you should have done the treatment to reduce the risk - then you can make a decision that you are comfortable with. At the end of the day, it is you that needs to be at peace with the decision.

There is certainly no judgement here on whatever you decide to do. This community will support you and walk along side you as much as you need.

Keep us posted as you are comfortable

Lianne

Brock C
93 Posts

Hi Wendy… I’d like to share what my anal cancer treatment was like, although I believe each patient’s experience can be quite different. Maybe it will help you make a decision.

I was diagnosed with Stage 3 anal cancer 4 years ago. I wasn’t given a choice in terms of my treatment; it was simultaneous daily chemo and radiation for 6 weeks. My understanding was that one wouldn’t work without the other.

My chemo was self-administered - one pill at home every morning and every night. I was “hooked up” at the hospital once, for about 45 minutes on my first day of treatment and again, once, halfway through. None of it made me sick.

I spent less than 10 minutes every day undergoing radiation treatment at the hospital. It wasn’t horrible; Cancer Centre staff helped make the experience much less traumatic than it might have been otherwise.

While I certainly didn’t feel like myself during treatment and I didn’t want to do much, I was able to pass the rest of the day at home and live fairly “normally”. I didn’t look sick and I didn’t loose any weight.

I hope my notes are of some use to you. Wishing you all the very best,

Brock C

Cupcakes
200 Posts

@WendyIdz.


Hi

I can totally understand your thoughts in this area. The thought of living out your days with chemo and sickness is like nope, no thanks. And of course this is a personal choice for each individual. As this type of news effects us all differently with many different variables at play. Seeing what your team has to say about a timeline and quality of life would play a big role in making this decision I’m sure. But we can offer our experiences up to you. Two and a half years ago I was diagnosed with stage 4 breast cancer and given a few months to live at diagnosis. The first 6 months were filled with chronic pain and a failed treatment with spreading. Not to mention the beginning of the pandemic so I was isolated for most of it, no loved ones, no social life. But things did turn right around. My second treatment worked great. Removing all pain. My last 2 years have been filled with a normal life. Moments and memories with loved ones. Yes I’ve had chemo and doctors appointments to accommodate and some “down” days on bed rest. But chemo wasn’t all that rough for me and I had way more good days than bad. I am even currently on a break from chemo and doing surveillance scans. I wish you peace on your upcoming decision making and clarity.

Charles
128 Posts

. . . .But I'm also practical and worry that if I didn't agree to all recommended treatments and died, what would happen to my life insurance? . . .


This question shouldn't be answered by anyone here:

. . . It should be posed to someone licensed to sell (and advise on) life insurance policies!

It's _your_ policy, it may be different from someone else's policy, and there may be a lot of money at stake:

. . . Write to the life-insurance company and ask for a recommendation for a local broker / agent for a consultation.

Please report back here -- the question is applicable to lots of people.

Thanks --

. charles

Kuching
408 Posts
I agree with Charles , you need a professional to answer that question for sure. I guess it boils down to whether refusing treatment would be considered as suicide. Most life insurance policies have a suicide clause, which usually says you won’t be covered if you commit suicide within 2 years of taking out the policy. So that’s one thing to check. Also, from what I’ve read, people who opt for MAID (medical assistance in dying) are still covered by life insurance. Bottom line, I would hate to think that anyone would have to endure treatment they didn’t want just to satisfy the insurance company!
Cynthia Mac
3982 Posts
WendyIdz.‍ trying to decide on a treatment plan or not to embark on a treatment plan is such a personal decision. It can depend on your living situation (relationships with family), your outlook on living and dying, quality vs quantity of life (as you’ve pointed out), even something as seemingly odd as owning a pet!

I agree with ACH2015‍ - have a good, in-depth discussion with your oncologist/ radiologist about the proposed treatment plan(s). Really try to get clarity with regard to what symptoms to expect, and symptom management. Not all treatment plans are debilitating, and yours might work out for you.

Write down all your questions beforehand, and leave spaces between them to write down the answers. If you can, take someone else to the appointment with you and have them write their answers on a copy of your questions so you can compare notes after the appointment.

When my Dad had lung cancer, I did this for him, and more than once, we came out of the appointment and Dad would say something that he’d heard the doctor say, and I was able to say, “I thought he said more…” and what I had heard was less dire than what Dad had heard.

When he started chemo, I was terrified for him - he was 78 years old an had just lost his wife (my mom). He actually gained weight during that course of treatment. Even during his second round (which had immunotherapy with it), he was able to do a lot of things he enjoyed, except for a few days every cycle, when he “felt low.”

There are thousands of people across Canada living with stage 4 cancer. Some are doing better than others. Again, the decision you face is an intensely personal one. No matter what you decide, it will be the right choice for you.

I went to Cancer.ca and found this publication with questions to ask about treatment. Perhaps some of these will help you formulate some of your own questions.
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