Anybody consider/decide to quit chemo?

lenaAZ

I took a long time to decide whether or not to accept chemo. I decided to do it, and now am on Day 16 of my first cycle. Many of the things I feared when making the decision -- my friends are backing away and my family is trying, but they're having a harder time than I am and I basically feel like I'm just hurting them. I am trying not to be a jerk to people, and I think usually succeeding (or apologizing when I am short-tempered) but I cannot conceal that I am miserable and I think nobody, friends or family, wants to deal. This is even though I concealed most of the chemo side effects I have experienced because I thought it would upset them. My sister went with me to my first infusion and I still have a friend planning to travel with me to my second infusion (I am temporarily living in a small town and have to travel for chemo), but after that I will be going alone.

I also think I did not understand how many months it would be before I can look for work again, and the prospect of living like this for months and months and then trying to restart my life ... well it sounds impossible. It's not that I don't want to be well, it is that I actually think I might be better off dropping out of treatment, looking for a job, and taking my chances with the cancer. The damage to my and to my life that is happening during treatment ... I am starting to think there is no recovering from it, whereas if I don't do treatment, I still have a chance that the cancer won't spread. I am wondering about people who choose to pull out for reasons related to their life situation.

moth

As a stage 4 patient I'm biased to throwing everything you can at it while you still have the chance. If your drs recommended it, they thought you would benefit. Your health should come before friends and family; sometimes illness helps us see that some relationships in our lives are not strong or supportive. That's a reason to ditch those people, not your treatment.

Good luck making a difficult decision! I hope you find support either way- cancer isn't easy no matter what

exbrnxgrl

Like moth, I am also stage IV. I have never had chemo, strange but true, but I have had to deal with a myriad of surgeries, treatments and hospitalization.

Your signature line is not public so we don't know anything about your particular bc, but I'd like to address the family and friends issue. First and foremost please put your health and yourself first. Your friends and family are probably frightened by your dx and may not know how to react. Please make it clear that you need their support. Make sure they understand your type of bc and why your doctor has prescribed chemo. Make sure they understand that you will have bad days when they will need to be patient but this is only temporary. Please don't conceal your side effects because you don't want to upset them! After all, YOU are the one who has bc and you need to do whatever you can to prevent a recurrence. This is about you not them and you should value your own life above what upsets other people. Would they really be less upset if you quit chemo but had a metastatic recurrence in a few years? I also hope you have spoken to your oncologist about the side effects and have asked for meds or other things to lessen them. As I said, I have never had chemo but I've read enough on this forum to know that your oncologist may have more than a few ways to alleviate some of them.

Yes, there is certainly a chance that your bc willspread. Only you can weigh the risk vs. reward but please, if there was ever a time to put yourself first, this is it. Take care and best of luck with your decision.

lenaAZ

Hi moth and xbrnxgrl, I really appreciate your writing. It is sort of surfacing for me that my doubt about the chemo does have a lot to do with other people and maybe less to do with what I want. You are helping me sort it out. Truly grateful you took the time.

Anonymous

Let's say you stop treatment and the cancer does spread (and the odds are that it will) - how do you think your friends and family will react then when you have a terminal diagnosis? Six or nine months of treatment for early stage disease is nothing compared to the mental distress and physical pain that a Stage IV diagnosis brings. Its monthly treatment, scanning every few months to make sure its working, and the distress of worrying about progression until you run out of options or your body gives out. It is complete and total upheaval of life as you knew it, for the rest of a now much-shortened life. You want to roll the dice for that option?

Put yourself first. Ignore your family and friends and whatever responses they may or may no be giving. Work with your care team to sort out drugs to help manage side effects and focus on using this time to decide what and where and how you want to move forward with your life when cancer is in the rear-view mirror.

ruthbru

Iena, I don't know what chemo regime you are on, but I worked throughout chemo & did most of the things I wanted to do as well. I didn't feel great, but not ill enough to drop out of my life (plus sitting around & thinking about it all day long would have literally driven me crazy). My recommendation would be to maintain as normal of a schedule as you are able, and make sure you put some gentle exercise program in place. Exercise can help with both the physical and emotional challenges a cancer diagnosis and treatments bring. Nobody, no matter how well meaning, can understand what you are going through except (and then only to a certain extent) others who have been through the same thing. I don't know if there is a cancer support group in your area, or if you know other people who have gone through cancer treatments; but both can be a source of understanding & support; as can we here on BCO. and/or working with a therapist.

At the beginning of chemo it is hard to see a light at the end of the tunnel, and it is definitely hard to go back for more. Just take one day at a time and remember that you are greatly reducing your chances of ever having to go through cancer treatment again. I can tell you that for myself; there has been a full recovery and a healthy, happy post-chemo life.

lenaAZ

SondraF and ruthbru, thank you. I think I really needed to hear from people who are "inside" the experience. It feels really different to have this perspective, especially on the friends element.

Cowgirl13

Lena, I didn't really want to talk to people about chemo and it would have freaked out my brother and sister. I was afraid that if I started a conversation about it I would go down the rabbit hole and when I go down the rabbit hole, I'm gone. Several months into chemo there was a breast cancer support group that was part of my hospital. It was lead by a psychologist who was also a breast cancer survivor and it was a tremendous help. There were women who were in various stages of chemo so it was very helpful. I will say, I spoke to a really close friend almost daily and that helped. Can't remember what we talked about but it was so helpful.

If you have not been exercising perhaps you could start by walking. Maybe 15 minutes a day and extending it incrementally. Small steps are as good as big steps, particularly if you are not in shape. Really reach out here and share what you are going through. We have all been there.

Sampy661

Hi LenaAZ,

I'm currently on Chemo, perhaps a relatively easier regimen compared to others with only 4 infusions of Taxotere and Cyclophosphamide due to my early stage breast cancer. Lucky me and I mean that sincerely, I am so lucky that these amazing medicine even exist to keep me alive.

I too wasn't willing to comply with my Breast Surgery and Oncologist Team until I read the words in this here forum “Chemo IS Life" care of MOTH, these three words completely changed my perspective, think about it Lena, CHEMO IS LIFE, your life, not your family, not your friends lives - this is where you put yourself first and any one around you worth their weight supports you, you may just need to remind them, you come first right now.

I've just completed my 3rd infusion but let me tell you, the first cycle of Chemo, especially between days 12 to 22 were the hardest for me, it's where I lost 30% of my hair despite cooling my scalp and dealing with the fact, I not only feel differently, l look differently.

The difference between you and I may be, I don't internalise my anguish and discomfort, I let it hang out, I ask for help, I remind myself this is merely a bleep in my life and that I deserve to be the centre of attention, I know it's childish but there are enormous benefits to behaving like a demanding child, I actually receivethe support and care I need! Reach out Lena.

Listen, aside from losing a little bit of weight and hair with each additional cycle, coping with chemo gets easier and easier. I'm so glad I took this challenge head on. I'm so relieved I've left no stone unturned, that I'll never have to wonder what if, had I threw in the towel after my first infusion where I was, a little down.

I wish you the best, I hope you continue with Chemo and remind yourself, this is about you right now and it does get better. Good luck Lena⭐️.

EDIT

I wanted to add, due to severe lockdown in Melbourne, Australia, I’ve had to fly solo each cycle, no support friend or family allowed. This gave me the opportunity to befriend a wonderful 69 year old woman with Lymphoma who’s desperately trying to recover from persistent anaemia so that she may qualify for a special trial.

This woman who I’ll call Diana Prince, adjusts her chemo sofa like it’s a banana lounge as though she’s sunning herself in Saint-Tropez while her husband is fading with Dementia and her daughter, newly diagnosed with Multiple sclerosis. She’s my strength and motivation when I get antsy, see if you can find yours motivation and strength to persevere.

Go get ‘em Lena

lenaAZ

Cowgirl13, Sampy661, and everyone, I cannot believe how much you are helping me. You are saying things that no one in my supprt circle knows to say. Your words are landing and I hope you can feel my gratitude coming back. So sincerely thank you. lena

AlwaysMeC

If your center can recommend it, you may benefit from therapy. At least you will have an objective ear to be a place to vent.

I just had cycle 5 of 6 TCHP. I absolutely hate Taxotere and the steroids I have to take. Since the beginning I started a treatment log intended to be a way for me to track prescription use and symptoms. It gradually turned into a journal. And let me tell you, a lot of those entries are dark as heck. Too dark to even mention. I am normally a pretty positive person, at least when it comes to my family life. But man I scare myself when I read those entries.

I know I have contributed to strife in my marriage because of my inability to put my feelings in check. It is not all my fault, but at least if I can recogmize it as it's happening I may be able to stop my negative emotions from seeping out and soaking others. I have to remind myself that caregivers aren't always aware of my diagnosis. They don't live with it 24/7 because frankly they don't need to. It can be quite shocking for people on the outside, and they aren't fully prepared for the negative emotional side of this. This is why I advocate for caregivers to join support groups as well.

Anyway, i have come to realize, from my log/journal that I have to watch my emotions for the first 11 days after treatment. Being able to count days has helped. Things contributing to my lack of control, well freaking steroids for one, and blood counts dropping having to recover, and forced menopause, and lastly being HANGRY. I loooved food before this. My adult daughter even became a chef because of our love for food. No taste and horrible texture just isn't motivating me to eat. So as the cycles have come around I've just been focusing on eating what I can and forcing myself for my mental health.

I totally get what you are feeling. And you know what? Every cycle I go into it saying to myself, "I don't want to do this anymore. I am telling the doctor I quit." But I still go, and afterward I am glad I did. It's okay to tell yourself that you hate it. Recognize that feeling and let it out, then just go and do it. You will be glad at some point before the next cycle that you did. Time doesn't stand still. You will reach the end of this part of treatment eventually.

ruthbru

It's a good thing I didn't keep a journal when I was in treatment, because it would have consisted of the word 'FUCK' written over & over again. (My apologies for the profanity, but it's the truth!)

DebAL

Lol you speak the truth, ruth!!

AlwaysMeC

Ruthbru, so much yes. I actually just scribbled on one third of a page. Literally, just scribbles....

K-Gobby

I was diagnose with a 5cm, Grade 2. Manageable i thought. Chemo one every 3 weeks for 4 times. MRI, CT. Bone Scan, Electrocardiogram and Biopsy and ultrasounds. Looked like a clear path with a likely double mastectomy and hair loss to gone. Then last Thursday am i got a call from my MO. Some news she wanted to give me before i met here on Friday. I now know i carry the BRCA-2 gene. My 4 infusions moved to 12. Once a week. I really did think today, do i want to do this 11 more times? Never having been sick, I know like so many face that dreadful nausea and the weirdness of the steroids. Just about turning 61, I am facing the fact that life for me is changing and in order to live, I must do it.

MountainMia

Lena, I hope you're doing okay. One of the most important things I've read on this forum is

YOU DON'T HAVE TO BE BRAVE. YOU JUST HAVE TO SHOW UP.