Refusing further treatment.

Brock0207

Ive decided to stop treatment. I am wondering how long will I feel well before the cancer spreads beyond the nodes. What will the quality of my life be and for how long. What will happen and how long and badly will I suffer in the end?

exbrnxgrl

Brock, you provide no details of your bc nor treatments. Even with that info, no one can predict how your disease will progress or if you will suffer. Wishing you the best.

Nel138281

Brock,

Have you asked your onc those questions.  He/she would best be able to answer   And they should refer you to palliative or hospice care.  You should not suffer and there are many ways you can be assisted 

Nel

dtad

Brock0207...so sorry you are going through this. May I ask you to make your stats public so we can better answer your questions appropriately. Good luck and keep us posted.

Brock0207

Ive finished the 2 months of red devil and am halfway through 14 weeks of taxol. Supposed to have a month off then a double mastectomy. Then 3 months of radiation 5 days a week. I'm just done with this . I would rather stop and have a few good months. Being tripple negative with lymph node involvement doesn't bode well for my future. I don't want to have to fight this every few years.

moth

But hun, you could have a decade or more! Have you put in your stats into the Predict calculator? http://www.predict.nhs.uk/predict_v2.0.html

TNBC is nasty but once treated, it doesn't always come back. You might never have to deal with it again.

Is there something specific about treatment that is bothering you? Do you need your MO to address more of your side effects? I know this seems like a drag but by most accounts the taxol is easier than the AC and radiation is easier than both... A sucky year or 2 for a decade plus of living and adventuring and loving and doing all the things out there - that might be worth it, right?

These boards are great support networks. There are tons of people here who will cheer you on every step of the way. And if you're depressed or unmotivated, perhaps you need an in person support group or a counsellor. Depression can hit us hard during treatment.

best wishes

VL22

Brock - first let me say I agree that you have a very long treatment protocol. It must be exhausting just thinking about it. But you’ve finished what many consider the most difficult part. You’re halfway through taxol. While I was going through the nausea and bone pain of chemo and a bad infection from surgery, I would cry in bed at night. It can be horrible.

But it will get better. Don’t give up now! Throw everything you can at it! Never forget you’re a stat of one. You can’t predict the future - none of us can.

I agree with moth about maybe seeking out counseling. Maybe medication would help.

I hope the rest of your treatment goes smoothly and you are able to find some ways to enjoy yourself.

Hugs.

Meow13

You could talk to oncologist and see if you can get alternative treatment. Maybe be in a study to try other chemo therapy or maybe qualify for targeted therapy. The thought of suffering weighs on many of our minds. I can certainly understand how you feel. You made it through red devil AC and halfway through taxol. Atleast you did try and maybe that is enough. Tell your doctor and if they refuse to listen or help try another doctor. It is your life your body.

Brock0207

My oc is the only one in town that my insurance covers and you can't get a straight answer from him. Last week I had to refuse treatment until someone would go over my pathology report because no one has yet. They just hand you a list of appointments and expect you to do what they say without explanation. I've been in the hospital 50 days so far this calendar year and it's only June. I need some hard numbers to decide. I am not willing to suffer for a year just to buy six months. I understand that most people feel differently and think that I must be depressed. I just look at things from a logical point of view not an emotional one. I've had a very full life and if it's time it's time. I want to go with some dignity left. Of which I've had very little this year. This is not how I want to be rembered.

ElaineTherese

Brock,

Try the Predict calculator linked to in moth's post. It should show that you will derive the most benefit from surgery. If you want the most bang for the buck, you could quit chemo, skip radiation, and just do the surgery. I'm sorry to hear that your MO is so uncommunicative; that is so unhelpful. ((HUGS)) whatever you decide.

Meow13

Brock, unfortunately I can see why you need to say no more. They need to pick their heads up and listen to you. I hate to say it but they are probably worried about their reputation more than you. Sorry there isn't another oncologist to see, this one sounds awful.

You are the one in charge, don't let them tell you otherwise.

moth

I'm an analytical person as well. I'm looking at your dx and not seeing where you're getting the 6 months that you're speculating. People who are stage IV are living way longer than this - & many are living active full lives.

Meow13

moth, I think she is fed up with her QOL and an oncologist who just doles out treatment. In all likelihood, she will not die from stopping chemo. She got some benefit potential from what already has been given. She needs to decide what works for her.

Brock, the very best to you. I hope you start to feel better so you can enjoy life.

Brock0207

Plus it anyone has experience with someone who has passed from bc, what are the last few months like? Will I be in pain? Will I be able to care for myself? Will I be in a diaper? What will my actual day to day life be? The unknown is the hardest part but I can't find any articles that address specifics. Having the information will allow me time to wrap my head around it and eventually be able to deal with what is to come.

bluepearl

Chemotherapy would likely bring your survival up to better odds...say 60% in 5 years and 40% in ten years, and in those years better treatments can become available. Just the other day a woman with stage 4 has no evidence of disease with a new immune therapy. You are stage 3B not stage 4 with liver and brain mets all over the place.....6 months...I don't know who told you that, but it isn't so. Even with TNBC that has gone to the liver, say, you can still have a few good years. But, I also get what you are saying as a friend was tired of her very pronounced lung cancer suffering and died with dignity...if you get my meaning...which is legal here. That said, I wish you peace and that you might just beat this disease...it isn't a 100% death sentence at stage 3B.

Brock0207

you are correct in that it's the lack of information and contradictory information that has me concerned. The internet is confusing and making this harder. Some brutally honest statistics would at least let me feel as if I had a choice.

Brock0207

And thank you for listening and sorry to vent. As you all know. This is difficult.

Valstim52

The internet is not the most accurate. It will scare you to death. Look at my stats. Triple negative and Inflammatory. I'm approaching the 3 year mark in November. I was given an 80 percent chance to live 5 years with the full treatment plan. I took it. Was treatment horrible? yes. The worst was what you have already gone through.Scour these boards. There are so many women with stage 3triple negative that have lived past the 5 year mark.

Yes, we are all different and its really tough to do treatment. I wish and hope the best for you.

Val

ElaineTherese

Brock,

There's a thread on death and dying here. (See link below.) If you're interested in following the posts of someone who was brutally honest about what it felt like to be dying of breast cancer, search the posts of a late member named Rosevalley. It wasn't pleasant for Rosevalley, and she was in a lot of pain for the last few years. But, she nevertheless had her good days and her bad days, just like the rest of us.

https://community.breastcancer.org/forum/8/topics/770023?page=141#post_5212269

carmstr835

Brock

Please call me anytime. I tried to reply to your personal message but it says your not receiving messages so I can't reply. but yes please call me

klvans

Olivia Newton John had similar stats to yours (triple negative, extensive node involvement, IIIB) and she went 25 years without metastasis. You never know. Best to tough it out and go for it.

Brock0207

So I did this week's chemo but at a slightly lower dose. My oc has agreed to do an MRI before surgery. I was shooting for a biopsy to see if it's still in my nodes . But no such luck. Is there a test like the mamaprint test that works on tripple negative? My oc said that there is not. As far as the chemo I'm miserable. I've lost 2 more fingernails which are now bloody and sore. Constant diarrhea. A UTI like I've never felt before. I'm so weak that I have to use a walker to get the 5 feet to the bathroom. And so short of breath that I pant like a dog. Fun fun fun.

Greatsuebob

I'm finding this all very confusing. I had biopsy, lumpectomy, and given a dx of High-Grade Triple neg breast cancer without node involvement and clear surgical edges. Since I am over 70 there aren't any real statistics for survival available. I was given a choice of chemo and radiation and I'm guessing that's to cover the oc that he made the offer. There doesn't seem to be a lot of logic to taking chemo and radiation when the difference in survival rates is minimal, and I am already in my seventies. What I don't understand is (am I reading this right?) getting chemo and radiation before surgery? What is the logic for this? If I were much younger I would consider a 5% difference in survival over a five year time frame differently and maybe consider taking the poisons.

I agree with the comments about Brock already having gone through a lot of treatment and that she shouldn't give up without a fight. But I am also hearing that what they are doing is already making her life a living hell and she's fed up with it. Have you had the surgery?

VL22

Greatsue - maybe go to predict or lifemath and plug in your stats and get a pretty realistic idea of the benefits of chemo.

Brock - my heart breaks for you. It angers me that it seems your doctors are not doing enough for you. You are now just over halfway thru Taxol correct? The question to ask is if continuing is doing more damage than good.

Hugs.

xxyzed

Brock - I was as sick as you during chemo. Could barely stand, let alone drag myself the 5 steps to the toilet on my legs that felt like they had been shattered all the while trying to raise my two young boys alone. You can't help but wonder what permanent damage you will be left with and if it was worth it. The reason why I stuck with was because of those two young boys and only the year before seeing the long agonising death of my husband from lymphoma after two years of hell. I found his doctors were comfortable telling him what his death was likely to look like and how it would progress when he asked them. I can also say that I’m feeling like a normal person again after all those side effects. An unfit, weak muscled version of me but I at least now have the energy to put myself back together again and to new people that I meet I am just a normal person who can blend into the crowd.

Fiercer

Hi Brock- Maybe it’s time to evaluate your blood quality. I had extreme weakness and was tired beyond belief. I had a transfusion and it made a huge difference. I have low blood counts as it is.

Might give you a boost

Brock0207

Fiecer you are correct. My blood counts have been in the toilet the entire time. I've had infusions and spent quite a lot of time in the hospital in isolation. I don't know why they are not treating the anemia. This Thur they were not able to do any chemo due to my labs. I did ask the PA about the onocot test that my oc said would not work for tnbc. They did order it but when I pushed for the results she said it's not just one number but a series of percentages. I was under the impression that it assigns you a number between 1-100 indicating the likely hood of a recurrence.

I've decided to finish chemo because I only have 3 more to go. As far as surgery goes I am making an appointment with the surgeon. Maybe that will take some of the dread out of it. I really suck at long drawn out stress. I've never been able to handle it gracefully and this is no exception.

Anyway I'll keep you all posted.

Meow13

Yes oncodx testing is not for triple negative because hormone therapy won't help you. Good luck with your treatments sometimes they decide 4 might be enough especially if you are having an allergic reaction.

Brock0207

Update..I finished the chemo and they did a presurgery breast MRI. It showed that all 12 tumors are gone! So I decided to go ahead with the mastectomy. I'm really sore and the drains are a pain. But on a good note the final pathology report shows that there is no cancer left anywhere! Yippie. Thank you all so much for listening to me while I struggled with all of the decisions that go along with this crappy situation.

WinningSoFar

Brock, it's amazing how much better life looks when we respond to chemo. I only did Taxol and frankly I hated it. Then I did surgery. No radiation since I had it before.

Nearly seven years later, I'm still here. Triple negative inflammatory metastatic. You never know.

purplestargazer

Ohn my goodness, Brock. Please keep going. The surgery is nothing compared to the chemo. I had lumpectomy on my first go-round. I was back to my life after 3 days.

As you can see from my stats I've had a reoccurance. I'm 2 weeks out from BMX. No pain. Some discomfort. I'm FINE. Truly an easy recovery. I did rads last time. So easy.

I have more chemo in my future.

Don't take my story to mean that you will also have a reoccurance. It sucks but it happened and we're dealing with it. My story won't be yours. Many people fight TN once and live the rest of their lives.

You're almost finished with the hardest part.