Dreading Upcoming Appointment

Ultimately all medical choices are up to you regardless of what anyone else thinks. I am no fan of medical appointments, tests, scans, etc. but since I am stage IV, and want to live, I have done it for just about 11 years. Why do you think “end stage” patients easily refuse tx? If you are speaking of stage IV members who have blown through all possible tx, that’s a very different thing than you are proposing. Even if you are stage IV, death is usually not quick and without medical intervention, not painless. Again, it is your choice but please consider speaking with a therapist and your mo so that you can understand if you’ve had progression what that means and all it’s implications. Letting nature take its course is not often pretty nor easy. If your husband is easily upset this course of action won’t bring him any comfort.

I also had uterine fibroids. I had a myomectomy, a uterine artery embolization, and finally a hydro thermal ablation. The last one worked and I never had a period again. Yup, I disliked every appointment, every procedure, and every test but I was looking at the long game. That’s the thing with an ongoing medical condition. We may dislike the processes involved but it’s the long game we’re focused on.

I wish you the best with whatever you decide but again urge you to speak to professionals to truly understand you situation, fears , and frustrations. Take care

rather,

We have had a few members consider doing nothing when dx’ed. Almost all stopped posting so their story ends there. We did have one member who refused to get a dx when it was apparent she had IBC. She continued posting about what she had to do to deal with the fungating tumors and other miseries as her disease progressed. She passed away after a few years and her sister confirmed that she did indeed have bc. Yes, she did it her way but suffered for quite a while before she passed. Not sure how this was better than conventional tx and medical appointments but we all have a choice.
You are correct in that the overwhelming goal of most bco members is to live. Almost everyone who is dx’ed with metastatic bc, the only kind that kills you, have many treatments to try before reaching the point where they are out of options. I have been a stage IV member for almost 11 years. I have seen people stop tx but only because they truly ran out of options or had severe reactions to a tx. Although the course of each person’s disease is not predictable, one often has years before you reach that point. Rarely does an mbc patient get dx’ed and then pass away a short time later.

I once again urge you to speak with someone about the realities of such a decision before making a choice. Letting the disease take over with no medical intervention will not be easy, pain free or peaceful and it seems as if you might think this is easier than medical attention but it is not. You mentioned your husband being sensitive. How would he deal with the consequences of unchecked progression? I don’t get upset easily but it would be beyond upsetting to see a loved one go through this. You do not know if you have mbc yet and even if you do you could have years ahead of you. Treatment choices always belong to the patient and although I may not agree, if a patient makes a fully informed choice, doing nothing is an option.This is a choice that very, very few make on bco and I am not aware of a website/forum that may support no treatment but they may exist. Tak care.

ratherdisappointed, I would add to the excellent advice you have received that chemo induced menopause is a possibility, not a certainty. It depends very much on your age and the aggressiveness of the chemo. I was thrown into menopause at the age of 39 but was the exception rather than the rule at the time. Like many things, it's a bit of a crap shoot.

I would also urge you to think through your next steps and seek out advice. As others have said, death from MBC is often neither quick nor pretty and treatments are often far scarier in our minds than they are in reality. As you can see from my bio, I've been through a lot of treatment and, to date, have rarely suffered extreme side effects. It's all been pretty manageable and preferable to the impacts of liver failure, lungs full of fluid, blockages related to advancing cancer and pain from bone mets, etc. Everyone needs to choose their own path but I would implore you not to wish end stage cancer on yourself. Let's hope this conversation is pure speculation and all is clear!

Edited to add: Just saw your recent post and want to assure you that you are not being judged. Your comment about seeing some terrible things with treatment prompted me to add something I heard from a friend recently. When her spouse was diagnosed with terminal cancer her oncologist told her she would do everything she could to prolong her life but she would not prolong her death. This resonated with me as my MO and I have discussed situations where it’s clear treatments should stop but physicians keep treating, decreasing quality of life. I’m not sure if this is what you are referring to but it is an issue, particularly in some jurisdictions

My heart goes out to you, Rather.

I read your post and it is as if you are in my head. I hate medical crap and I hate feeling vulnerable and I hate having monitoring and checking and I hate bad health news. Having said all that, it is ultimately our choice on whether we do screenings and follow medical advice. Getting screened and treated won't necessarily allow us to have a pain-free exit or a longer exit, it is just that these are the best options we have and they *usually* allow a longer life. It is also important to note that we are allowed to question what our doctors suggest. I always ask my onco why she orders things, why my labs show something and now that my DH is also in her care, I send her peer reviewed articles and question treatments he is getting. Example, he is now able to take 1 pill a day vs 4 pills early in the morning with a one hour breakfast window. So if your gyn experience was less than stellar, and you have other choices, find someone who resonates with you.

Best to you. We are our own advocates and no one will care for us more than we will. Do what you can. Don't hesitate to ask for help dealing with some of this if that is the delineator that keeps you from seeking medical care.