Terminal breast cancer leads woman to pick palliative care....

cp418

http://www.washingtonpost.com/national/health-science/terminal-breast-cancer-leads-woman-to-pick-palliative-care-not-aggressive-therapy/2012/04/30/gIQAY6rBsT_story.html?tid=pm_pop

Terminal breast cancer leads woman to pick palliative care, not aggressive therapy

taxitreesdeb

Thanks for posting this.  I read it yesterday.  I don't know how in the world I managed to ignore the fact that my diagnosis was so dire.  I finished treatment about a year ago.  Actually, my last radiation was May 4.  My doctors told me that my chances of survival were about 85%.  After reading this and hearing that this type of breast cancer is practially a death sentence, I am ready to panic and wonder if my doctors were lying to me.

On top of that, my new oncologist had me do a ct scan on Feb 2.  I called too soon about it and they had not gotten the results back.  Then I just simply forgot.  Fast forward to Monday of this week, three months later when I sent to see Dr. Cuartas and found out that the scan had shown something on my thyroid.  His office never did anything with the report.  I have an appointment for ultrasound on Friday.  I am so scared and angry and terrified.  WHAT THE HELL WERE THEY THINKING????  I could have cancer and they can't be bothered to look at the damn report?  I've got to find another doctor.  Cuartas is ok but his staff has been the most incompetent bunch of idiots I've ever dealt with.  It took months to get my medical records to them--and I had to be the one who finally got it done.  Then gave me a hyphenated name and couldn't find my records.  I HATE HATE HATE HATE those women. 

1Athena1

Wonderful story. Thanks for the link, cp. I especially liked the following excerpt:

I want every patient facing end-of-life decisions - which, when you think about it, eventually will be all of us - to have access to the kind of open communication I'm receiving. Each patient deserves to understand the diagnosis, the probable course of the disease and the likely timetable. Each deserves to be asked about personal goals, and each deserves help with making treatment decisions. We also need a process that helps doctors learn that the length of patients' lives isn't the sole consideration.

That, and the observation, made earlier in the article, that the good physician treats the cancer but the great physician treats the patient.

Diagnosis: 3/2009, IDC, 3cm, Stage IIb, Grade 3, 3/8 nodes, ER+/PR+, HER2-

Snoopsmom

This piece reminds me of my aunt. She was diagnosed with bc late in her life (mid 80;'s). Of course, the docs wanted to "treat it aggressively". She said, in effect, "Are you crazy?" She knew full well that at her age, she was nearing the end of her life anyway and she wanted to spend it on her terms. She died less than a year later. I don't know if it wasfrom the bc or something else, but at least she lived...and died...as she wished. More power to women like her!

taxitreesdeb

sorry I posted my rant on this piece.  It is  good piece and if it turns out that I have a recurrence and have no real  chance I'll probably stop wasting time and money fighting as well. 

Angelfalls

This is such a personal choice, dependent on so many individual factors, but more than anything, taking this decision depends on having quality, up-to-date information from our teams which is specific and relevant to our case.



What concerns me, though, is that unfortunately, we still see numerous instances on these forums of people making choices based on fears which come from old stats: Only today I read of someone who has just been told that with bone mets, they could only expect to live 3 months. This seems to me to be incredibly irresponsible, given that we have so much evidence to the contrary on these boards - real people living well, with good QoL, for many years and keeping those mets in check, getting to remission and even NED.



All of us who are Stage IV know that one day, we will face the decision of when to stop active treatment for our mets and switch to palliative care. But I hope that when my time comes, I will have access to good quality, up-to-date, relevant information which will help inform my choice and ease my transition. Misinformation at initial dx of mets does us all a great disservice and potentially robs us, our families and friends of many good years.



Angelfalls

ETA I would actually consider the author of this article to still be in active tx, as she is taking hormone/endocrine therapy.

Leah_S

So much depends on terminology. How do you define "terminal"? How do you define "paliative"?

 What this woman is doing is STANDARD OF CARE for someone presenting Stage IV at original diagnosis (an AI and a bisphosphonate). What she was offered was something that only recently has been offered, which is aggressive treatment that is usually only offered to those presenting at an earlier stage. She was probably offered this option since she has a very low volume of mets. There is a lot of evidence that treating this way leads to a better outcome (NED) for many woman.

The mistake the doc made was not determining what she wanted and also not explaining well enough why he was offering aggressive treatment.

What I didn't like in this article is the attitude that "since we can't cure it, why bother treating aggressively?" The implication is that aggressive treatment never makes a difference. The reality is that for many people it does indeed make a difference.

Another thing that bothered me was her dismissive attitude to terminology that is used now in cancer treatment. My onc calls this a "chronic condition". Yes, that is accurate. No it isn't untrue. It means I will never be cured but the disease can be contained, probably for many years.

Right now, I'm also Stage IV and I also have a low level of bone mets. I'm on the same treatment as she is and have been for approximately the same amount of time (2 years). I know that eventually (assuming the disease follows the same pattern for me as for most women) I will no longer be stable and will need to switch treatment, first going to other AIs and then eventually needing chemo. And I will use chemo. I will use every aggressive treatment there is. I've done chemo in  the past and, for me, it was very difficult. I will do it anyway since, let's be frank, the alternative is death.

And all those treatments will also be called "palliative".

Leah (who is, according to this article, terminal and on palliative care)

Angelfalls

I absolutely agree, Leah - great post! The core message seems so fatalistic; we'll all die one day anyway, regardless of what kills us, so why bother treating anyone with any disease, either through active, palliative, traditional, complementary or alternative medicines?!! OK, so I'm exaggerating, but that is kind of what it boils down to IMHO.

cp418

No one needs a doctor or support staff with fatalistic attidude no matter what your stage.  We need medical professionals who do their job well and never forget to treat their patients as if they were a family member.  They need to always remember that patient is someone's sister, parent, wife, child. Taxitreesdeb - please find yourself better doctor with a professional staff to help you.  Your rant is justified and no need for you to apologize!!