How does Stage 4 triple negative cancer play out without treatment?

Hi @deluga is it chemo that you are declining or considering declining?

I had breast cancer 10 years ago and although I try not to think about it, I do wonder what I would do and how far I would go if and when it spreads to stage 4. Like you I react to many meds (and foods, scents etc.)

On my way to tell my oncologist my decision on chemo the first go round I reacted to flavored seltzer I bought in the cafeteria!

That said with 3 kids in their 30's I have suffered quite a lot of side effects with cancer and bone medicines to sustain my health. I am fortunate to have had hormone positive cancer.

All of this is to say that these decisions are so individual and our overall health is too.

I wonder if you could see another doctor, a breast or lung oncologist (I know it is still breast cancer) to get whatever information it is possible to access. I also wonder if palliative care or a local hospice doctor would be of more help, since oncologists do tend to focus on treatment.

I di volunteer training for hospice and learned that services are available long before death is imminent. My mother was off and on hospice services for 3 years! They are very experienced in the course of terminal cancer and what your body will go through.

Another possibility is an integrative medicine doctor (or functional medicine, or naturopath). I was having IV glutathione treatments at my integrative medicine doctor's office alongside a women with stage 4 who was having some cocktail of nutrients or detoxing, nt sure.

I am 74. Not sure who I will feel in 10 years. I think our decisions should be respected and we should be as informed as possible on risks and benefits of each path. I hope you are comfortable and send you best wishes.

Thankyou for taking the time to respondand good luck to you, but your response did not address my question at all.

@deluga I made some suggestions as to how you might access information on what is going to happen, since your doctor isn't doing that. I thought that was the information you wanted.

Hello @deluga, I have to agree with @windyshores, because you are not getting the information that you need from your oncologist, a consult with palliative care, and eventually, hospice may be very helpful for you. If your oncologist's office is not willing to offer that consult, I would check with your primary care provider for the help that you deserve. Palliative care teams are very good at assessing where you are at in the process, offering comfort, and even predictions on what to expect.
I have stage IV lung cancer which is under control for now, but I know that my time will be limited based on the lack of treatments available today, and I have an early-stage breast cancer which is likely very treatable. I hope that I have the strength to recognize when it's time to go forward living the rest of my life the way I choose, without treatments. It's a big decision that you've come to, and one that I honor.

@deluga I think that each patient's journey is unique. There can be a list of symptoms, or timelines, or options given to you, but in the end your own body has the say-so what it might do.

It's good to read you have a support system in place, and are thinking clearly about issues that matter a lot to you. You sound like a logical person, but we all know that sometimes our health issues don't seem very logical, do they? I hope you will reread the responses here, and consider taking advantage of hospice or palliative care experts to give you some information to use.
Ginger

I am on palliative care for pancan so I have not answered before now. My palliative care nurse just seems to be on only seeing that I have pain meds so that I am not in pain. She has said that pancan is rare and they don't see many cases, so she has not been able to answer the same question you have. I am not sure Hospice folks will be any difference. Palliative care really blew off my infected large bowl and covid that put me in the hospital with sepsis 2 days before they were going to have someone schedule to come out to draw blood for tests. And I would think most people on this site are looking to fight whatever cancer they have. Very few of us that hang around just trying to have the best quality of life we can for the time we have left. My plan is to stay on palliative care as long as I have no evidence of any cancer. And then move to hospice care. But even that is difficult. My cancer markers are up to 1300. But that may have been caused by my infection. In the hospital a CT scan was done to find my infected large bowel, but they did not find any tumors. I return for another scan in just over a week if my palliative nurse cannot convince me the cancer is back and to go ahead and move to Hospice care. Had I been in Hospice care I would have just remained at home and let the sepsis kill me instead of going to the hospital. I have asked these same questions and just not really getting much of an answer. Best of luck to you with this. I try to do as much of the things I enjoy doing mixed with making end of life planning as I can. I think Hospice has help with this. I have gone over my taxes with my youngest son and my brother. My mom used to work for H&R Block and used to do everyone's taxes. Mom can no longer do this, and I just found out my brother has been doing hers and other family members taxes. My goal is to do my taxes this year also. All my best to everyone dealing with cancer.

You sound like a fighter and I like that. I have worked with pancreatic cancer patients that lived a relatively long time with good quality of life because they kept fighting.
Unfortunately, what I have seen, is that nurses (including both palliative care and hospice nurses) are not trained in their patients' medical conditions and all the complications and ramifications of their symptoms. If training is offered at all it is very superficial. And they do not take the initiative to educate themselves. I think this is a function of many factors, including the fact that it must be a very difficult job and you have to be strong emotionally (or devoid of feelings at all) in order to do the job and protect yourself.
The other issue as I see it is that nurse training programs, especially the RN and LPN or LVN are oriented toward "doing it." This, of course, is critically important, but nurses are left unable to answer questions - they do not have the resources to do the job as well as it should be done either.
A number of years ago we were (US wide) so desperate for nurses that RN training programs were only two years long. LPN and LVN programs were one year. Many did not have high caliber entrance screening exams. It was very sad. More recently bachelors degrees have been encouraged - but these graduates often are found in administrative positions - not bedside and certainly not home health - which is bedside, of course.
My solution: Patients have to educate themselves until nurses, especially home health types, are paid enough to attract individuals that have gone through extensive training. And these nurses need to be specialized - that will cost the home health agencies, of course, who tend to be owned these days by investors (owners have to return a profit to investors as we all know). I have personally found a world of difference between a clinical specialist nurse practitioner and a family practice nurse practitioner.
In the meantime, you need to read all you can and try to find resources to help you understand what you read. Quiz your physicians.
PubMed is free and a wonderful resource. Have you found it and used it? You need to.

I am 80 and have had breast cancer Stage 4 since 2013 ..to my liver only..on fourth line of treatment…i am active ie shovelling snow driveway yesterday ..line in NE ..
But know its a matter of time ..new drugs or all treatments have serious sideeffects …live alone..widowed a year..cared for husband 10 years + with Alzheimer’s..getting tired dealing with disease…have empathy for young women with this unfortunate disease..stage 4. I mean

I often wonder how my disease will progress but not comfortable asking as my disease is still responding to treatment..although kinda month to month it feels ..no family around/ close enough …friends only..it seems most of my experience is suddenly seeing cancer friends quickly fall ill and pass quickly.. so quality of life is importance but does one measure that? This doesn’t address your issue ..but we are up there in age …along with the disease ..this is my first post .. and need help to find discussion re liver mets and breast cancer!
All the best !

Just checking in to see how you are doing? Did you get your taxes done? I was able to get mine done and am just waiting for a refund to post. I did want to post this link for you. https://mylifechoice.org/2024/05/08/understanding-end-of-life-signs-recognizing-symptoms-6-months-before-death/#:~:text=What%20are%20the%20common%20symptoms,memory%20and%20other%20cognitive%20changes I hope that is some of the information you are looking for. Here is another thread on this board where I am trying to post information about what is happening to me. Seems to be a number of folks are asking the same thing and I hope someone can benefit from it. https://connect.mayoclinic.org/discussion/has-anyone-refused-whipple-and-chosen-palliative-care/?pg=5#comment-1234272