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Sigh...I think I have made my decision.

avargov
Posts: 19
Joined: Feb 2018

Hi gang!  Been a while since I have checked in.  

 

I think I have made the decision to stop aggressive therapies, and switch to palliative care.  My Onc wants to start chemo again in a few weeks.  I do not want chemo again.  We tried Cyberknife on one of the liver mets, doesn't seem to have worked.  The other, larger met, is in a location where they cannot place a marker.  Too close to diaphram and heart, and it doesn't seem like there are any radiologists that have the stones to attempt it.  Onc doesn't like liver resection, mainly because that only will remove that spot, and the cancer is still in my guts otherwise.

 

I think that I am just done fighting with this.  Only a couple months removed from my chemo and already feeling bad again.  Pain and discomfort.  And given the fact that I really didn't want to go through any treatment to begin with, this isn't that hard of a decision.  I promised my wife I would go though at least one cycle of chemo (mainly as a show of good faith).  But I am tired of dealing with this, and I do not want to fight any longer.  Some may say I am a coward, and I guess I am.  

 

Will keep giving updates as time allows, and as always, I thank you all for your support!

 

Alan

limamyangel
Posts: 1
Joined: Jun 2012

Hello Alan,

I will email you.

Trubrit's picture
Trubrit
Posts: 4759
Joined: Jan 2013

I am sorry that things aren't going well.  We all understand the desicion you are facing, or that you have made.  Words are not sufficient to express the heartache, especially as you are now expereiencing pain. 

I wish you peace, as you face your future. 

Please, if you feel up to it, keep us informed. We are still here to support you, whatever you are facing. 

Tru

beaumontdave's picture
beaumontdave
Posts: 963
Joined: Aug 2013

There are no cowards here, and certainly that label doesn't apply to you. Facing mortality and picking between hard choices, enduring this road, where even the lucky breaks, still leave you tired, scared, and so very changed, isn't for the faint of heart. those folks just pretend it isn't happening. You've looked straight at it and made your choice, and there's no wrong in it, it's your right. I wish you a miracle, but short of that I wish you comfort and peace, however you find them.................................Dave

abrub's picture
abrub
Posts: 2079
Joined: Mar 2010

I understand very well, and don't plan to do anything if my next scan shows more growth (as anticipated.)  Here is what I wrote:
Choices and thoughts…

We are all partners in our own care, and we each have the ultimate right to say No or to ask more questions.

It is important to ask yourself before any treatment/procedure if the intended/hoped for benefit is worth the negative aspects of the treatment. Remember that only YOU can decide what has value for your life. It is important that your doctors be clear on the side effects of a treatment, and on the options available. ASK QUESTIONS.

From my personal experience:

In 2016, I had a recurrence with a tumor on the vaginal cuff. I knew that to remove it, I would lose an unknown portion of my vagina, and I did. But I also thought to ask my surgeon to bring in a plastic surgeon so that we could address possible reconstruction issues. He was happy to bring in a Plastic Surgeon colleague who discussed what might be possible in terms of reconstruction. And yes, the plastic surgeon actively participated in my surgery.

All went well, and ultimately I was left with a functional vagina. However, I was also left with some random cancer cells – he couldn’t get them all, they were scattered through the tissue. My dr wanted me to consult with various radiologists about possible radiation therapy/brachytherapy (internal radiation). One of those drs really wanted to do brachytherapy on me, even though he hadn’t used it for appendix cancer before, in hopes that it might prevent those cells from growing.

My surgeon and I discussed the risk/benefits, and together decided against it. The area to be irradiated was very close to my bladder, and could potentially cause permanent bladder problems. In addition, my tumor type is very slow-growing. What wasn’t mentioned (but I later learned) was the high likelihood that the radiation would permanently scar my vagina so that it wouldn’t be functional again. (This was before I knew that my vagina was functional post-op, as this follow-up occurred before we were allowed to resume activity.)

All this with questionable benefit, so we opted not to go that route. My cancer did recur – a few months later, but in a new location. The brachytherapy would not have prevented my recurrence. My dr mentioned radiation as an option for the new tumor, but he was concerned at how close this was to my bowel, and a high likelihood of permanent bowel damage. After discussion, we realized that I have a very high quality of life; and we don’t know where the next recurrence will be. Radiation wasn’t worth it. I am now simply on watch and wait. My dr felt certain I wouldn’t want the radiation, but he offered it to me anyway, as it was an option that he needed to offer. He and I are very much on the same page regarding quality of life. I don’t want to spend my life within 5 minutes of a toilet.

None of us will get out of here alive. It is important that WE make our own decisions as to what we are comfortable with. Are we looking for Quality of Life or Length of Life? What is the balance point? What are we comfortable giving up in this quest to outrun cancer?

abita's picture
abita
Posts: 579
Joined: Dec 2017

You didn't opt for radiation, but did you do any chemo or immunotherapy?

abrub's picture
abrub
Posts: 2079
Joined: Mar 2010

I had Intraperitoneal chemo following that surgery in 2016; my onc already knew that I would refuse systemic chemo (which I had in 2008).  He was looking for other options, but agreed with my decision not to have the radiation.  As mine is appendix cancer, they don't yet have immunotherapy for it, so that was not an option.  We'll see what happens at my next scan (next month.)  I expect that there will be some growth.  I assume I'll opt out of treatment.

Twinzma
Posts: 204
Joined: Jan 2018

You are strong! Don't ever think otherwise. You have been faced with the impossible but have chosen to embrace this with grace. I do think that it is kind that you will do one last treatment for your wife. I pray for your wife to find peace in your decission and that your pain subsides so you are comfortable. Hugs! 

BRHMichigan's picture
BRHMichigan
Posts: 368
Joined: Jul 2017

I am inspired by your decision, Alan. It was courageous and so helpful that you shared it. Quality of life is so important. We don't talk much about people who suffer greatly through chemo and/or radiation only to die. Happened to both of my parents. Then I saw my father's second wife suffer 10 years after aggressive radiation to her uterus...destroyed her bowel. 

We certainly know our own bodies best. Conventional treatment isn't for everyone.

 

Sestra17's picture
Sestra17
Posts: 41
Joined: Jan 2018

I dont think you are a coward at all, just facing your plate realistically. I am in same situation. Blessings to you and your family.

Annabelle41415's picture
Annabelle41415
Posts: 6124
Joined: Feb 2009

I'm sorry that you have to make this decision but can truly understand why and I'm sure your wife will too.  I'm sure you have thought long and hard about this as well.  Will be thinking of you.

Kim

plsletitrain
Posts: 253
Joined: Jul 2017

The fact that you underwent numerous aggressive chemo and surgeries and everything else, and most especially the fact that you are coming to terms with your chosen fate shows not cowardice but bravery! I salute you.  I don't know what to say because if I were in your shoes I'd also do the same thing.  Try to be strong and beat the odds.  Keep fighting (and I don't mean it in the scientific way).  You can still survive without chemo.  Keep living.

Bill S.
Posts: 3
Joined: Jul 2016

Hi Alan, I compleatly understand what you are going through and the decision you have Made. I've been receving treatment for rectal cancer for the past 3 1/2 years.  A few sugeries and 3 round of chemo for the original site and liver mets.  3 liver mets with the largest having grown from 3 cm in March to 6 cm today as well as a 2 cm met in each lung.  Last treatment was Xeloda March through mid-May but did'nt slow the tumor growth.  Doc says my life expectancy is 4 to 6 months with no further treatment.  Could get a few more weeks with Lonsurf or a similar drug, but just don't want the side effects.  So I'm just going to enjoy the time I have left the best I can.  Fortunatly I.m feeling fine and doing all the normal life stuff today.  I don't have any advice for you, just wanted to share what's going on in my life. It is what it is and I am at peace with it.

Wish you the best and hope you will find peace.

AnneO1965
Posts: 15
Joined: May 2019

As I'm new here, I don't know you at all. But I can say you have my deepest respect. This is a HORRIBLE disease, and you've looked it in the face and given it the middle finger. YOU have decided when you were done, not cancer. You are NOT a coward and should be fired for even saying it.

I wish you much peace and comfort in your decision, and I will be thinking of you also. I know that you didn't make this decision lightly. Be blessed and know that you have at least one stranger pulling for you.

Bellesouth
Posts: 11
Joined: Feb 2017

I've always believed that it takes more courage to face death than to try and fight it or run from it. I salute your bravery and wish you peace all the peace in the world. Because you deserve it

Kazenmax's picture
Kazenmax
Posts: 331
Joined: Feb 2016

I hate that you had to make this decision. I hate this f-cking cancer. I don’t understand it. Thank you for sharing this. You didn’t have to And I can’t imagine how it felt to actually write it down. Facing the ultimate decision, you shared your strength with us. Thank you. 

Sending you and your family love and strength to face the coming days.

k

zx10guy
Posts: 195
Joined: Dec 2013

Just to bring to everyone's attention, the OP posted this last year in August.

As to the coward comment, this is what infuriates me about this whole cancer thing we all experience.  I hate the terms warrior and battle.  It brings forth situations such as this where if one decides it's time that some how they're a loser, coward, etc.  No one can judge anyone on what they feel is right for them in terms of their treatment.  The term survivor is a much better label for people like us.  Chemo affects everyone in very different ways that's why there is so much focus on individualized treatment plans.  While I went through all 12 FOLFOX6 treatments with only one where Oxali was taken out (round 11) and with around treatment 6 where the Oxal doses were reduced, I have to be honest where at about treatment 7/8, I wanted to give up.  The side effects were getting to be too much for me.

So I hope people will spread the word to not judge someone for deciding they've had enough and to cease the use of battle and warrior.

JanJan63's picture
JanJan63
Posts: 2482
Joined: Sep 2014

Survivor is a good word but I also don't hate battle and warrior although I think warrior is kind of overblown. But I haven't really come up with a good name for when we fight this. Journey is one that seems arrprpriate because, like many journeys, it has twists and turns and unexpected things happen and our destination may not be what we expect or hope for.

And yes, if someone decides that enough is enough they should not be condemned for it. I can't count the number of people who have said "I couldnt go through what you have" including my husband and daughter who have both stated that they'd let themselves die rather than go through what I've been through. So, really, to give up is to be human. And it's human to fight until the bitter end as well. What's right for one person isn't right for another. I've had plenty of moments when I wish I'd just not live through something. Moments when I think I can't do this anymore and I'm comforted knowing that when things get really bad we have euthanazia where I live so it's an option. I'm not scared to die but I'm terrified of suffering.

Jan

Trubrit's picture
Trubrit
Posts: 4759
Joined: Jan 2013

Alan checked in on the forum (or someone using his password) in February of this year, so that is a whole year out from the original post date.  So, wishing him well and hoping he will pop back on a give us an update.

Tru

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