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when is enough, enough?

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    Posted: Sep 30 2013 at 11:43am
Dear TNBC Foundation family,

This is a difficult article to post but I feel it is important and for some of you and your loved ones it may be useful to read if quality of life is important.


I am a fighter. I am a patient advocate who tries to help those with cancer, perhaps, get better/different treatment by suggesting to patients that they consider seeing knowledgeable oncologists at major cancer centers who generally have access to different clinical trials and also may have a different perspective on the patient's illness. Also, by re-doing pathology reports several women have discovered that they they did not have TNBC and were HER2/neu+ and that opened their treatment up to Herceptin often in combination with other drugs that, in some cases, added some time to their lives.

But, all to often, the treatments fail the patient and they are left with an agonizing question of "when is enough. enough?" For most oncologists, and I would say, most patients, I would say the answer is "Never."

That is an understandable decision. Will all have a profound instinct to survive. Most of us do not want to acknowledge that the harm of additional treatment outweighs the good. One of the oncologists I am privileged to know to know told me "I don't prescribe more chemo when I feel it will do more harm than good." That is the core of the Hippocratic Oath for him..."Do No Harm." But he also told me that many, many patients do not want to hear that and arguments can ensue. 

However, in my advocacy work, I have met several women who have decided with input from their oncologists that "enough is enough." That is a rare occasion and very specific tough questions need to be asked such as "do you really feel this new treatment will add meaningfully to my life expectancy?" However, all too often, if they ask their oncologists tough questions, some oncologists do not seem willing to acknowledge that the new treatment may very well cause more harm than good. I have seen patients start a new chemo when they literally had less than a week to live. The oncologist did not take the proper time, in my view, to explain other options.

In any event, I think this is an important topic. One young woman I helped for 3+ years wanted to do her 'bucket list'...she loved to travel, had no family, no need to keep working to survive economically and I was all for her taking the trip but she was advised not to take a chemo break even thought the treatment was clearly failing her.

She did not take the trip and embarked on yet another chemo. How do you value the experiences she may have had on the trip compared to a new chemo? Probably an impossible question to answer but a week before she passed she told me "I should have gone." I told her that "should have, could have are all buried with if" and she should not be hard on herself for her choice. "In a way it was the only choice for you. You have been such a fighter throughout" to which she replied, very sadly, "Steve, I should have gone."

Another woman decided to travel across the country and spend a few months with her daughter/grandchildren and forego chemo in that time period. She cherished that time and never regretted her decision. 

There are no answers here and everyone has different economic and family circumstances as well as different level of Advanced Breast Cancer and I am not saying anyone should do or not do anything but I found this article thought provoking.

with my love to all here,

Steve






I am a BRCA1+ grandson, son and father of women affected by breast/oc-my daughter inherited mutation from me, and at 36, was dx 2004 TNBC I am a volunteer patient advocate with SAGE Patient Advocates
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Natalie View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Natalie Quote  Post ReplyReply Direct Link To This Post Posted: Sep 30 2013 at 3:57pm
Steve,
Thank you for posting this, and you heart and support shine through as always.
Quality over quantity is such a big and personal choice.
Thank you again,
Natalie
TNBC stage1 size 1.8, grade3 no nodes 4/11 Lumpectomy 5/11 4cycles DD A/C 4cycles DD Taxol. Double Mastectomy 12/11 BRCA all neg
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Lillie Quote  Post ReplyReply Direct Link To This Post Posted: Sep 30 2013 at 8:25pm
Dear Steve,
Thank you for posting this.   I have a situation in my life at the present time that a lot of the information and education would be very useful and applicable.  The big issue is the control that the patient seems to need, even to the detriment to herself and everyone around her. 
 
You have probably seen my posts about Faye, my SIL.   Just yesterday she told me about the nausea that has begun.  She has numb lip and chin syndrome for about 2 weeks now which caused her to damage her inner lower lip to the point that she is afraid to eat.  She is becoming dehydrated and has been in constant pain for a long time, but the pain has increased immensely in the past two weeks.  She is afraid to drink water for fear of worse nausea.
 
I said the word "Hospice" and she let me know that that is not a consideration.  Neither is visiting her oncologist for IV fluids or letting him know about the numb lip, chin.  She hasn't seen any medical personnel in three weeks and has no intention of doing so.  She told her husband (my brother) that she would know when she needed Hospice. 
 
Her family is like a bunch of puppets and she is pulling the strings.  
Have you ever encountered a family similar to this.  She is dying and seems to get comic relief out of seeing her family "dance to her commands".
 
She is stage IV, metastatic TN breast cancer to the bones and liver.  I fear that it is probably affecting her head also.  I fear that she will become delusional from dehydration, or spike a temperature with a UTI during the day when she is home alone.
 
I will conclude my post with a Huge Thank You for all the endless hours you give and the heart that you show for us ladies.   You are using your grief well my friend.
 
Thank you,
Lillie
Dx 6/06 age 65,IDC-TNBC
Stage IIb,Gr3,2cm,BRCA-
6/06 L/Mast/w/SNB,1of3 Nodes+
6/06 Axl. 9 nodes-
8/8 thru 11/15 Chemo (Clin-Trial) DD A/Cx4 -- DD taxol+gemzar x4
No Rads.
No RECON - 11/2018-12 yrs NED
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Post Options Post Options   Thanks (0) Thanks(0)   Quote SagePatientAdvocates Quote  Post ReplyReply Direct Link To This Post Posted: Sep 30 2013 at 9:12pm
Dear Lillie,

thank you for your kind words. 

I think it would be best if we continue this conversation in private but I would like to suggest that you get a
copy of MD Anderson's Supportive and Palliative Care Handbook


At the risk of incurring your SIL's wrath I would give this book to someone in the family who can start to understand the road your SIL will be on (and her loved ones watching her too).

The book is not available on Amazon etc but can be ordered via email. Address appears in the link above.

Happy to talk with you, Lillie. If you call and I don't pick up I will try my best to get back to you as quickly as possible. Also if you prefer please send me your phone number and a time for me to call you.

And thank you again and again for you marvelous support and wisdom for all here.

warmly,

Steve
I am a BRCA1+ grandson, son and father of women affected by breast/oc-my daughter inherited mutation from me, and at 36, was dx 2004 TNBC I am a volunteer patient advocate with SAGE Patient Advocates
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Post Options Post Options   Thanks (0) Thanks(0)   Quote SagePatientAdvocates Quote  Post ReplyReply Direct Link To This Post Posted: Sep 30 2013 at 9:16pm
Dear Lillie,

I will be attending this conference next week so if you have any specific questions I can try to ask some of my palliative care physician friends there for answers.


warmly,

Steve
I am a BRCA1+ grandson, son and father of women affected by breast/oc-my daughter inherited mutation from me, and at 36, was dx 2004 TNBC I am a volunteer patient advocate with SAGE Patient Advocates
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Loveforlife Quote  Post ReplyReply Direct Link To This Post Posted: Oct 01 2013 at 11:52am
Dear Steve,
Thank you so much for posting this article. Yes, it is difficult. It is so important though. For me it's something I've thought about for many years, especially since being diagnosed with cancer.
 
I'm only on my first round of chemo for mets, but it is showing signs of not working. I'm looking into clinical trials as there are none in Bflo NY where I live that are applicable to me right now. I've thought about how long do I want to fight. Not ready to stop now, since there are many things still to try! However, I think this article brings up many good questions about when to stop active treatment.
 
I had a great example in my father. He had renal cell cancer that metastasized to his brain. He did radiation, and was offered a clinical trial that had a low chance of success. He was only 64, but he chose to live out however many days he was going to be allowed. Unfortunately for us it was only a few months that he got, but he did have a relatively good quality of live. He did die at home with hospice, surrounded by his family. A good death as I saw it. I also took care of my grandmother and was her primary caregiver in Hospice when I was only 20. Another beautiful death at home. I work in a nursing home, so I see people who live far longer than they wish to. I also see people and their families who make the decision that "enough is enough."
 
I think this article points out that oncologists need to be forthcoming on the chances of treatment helping more than they will harm. I guess I don't see Hospice as a failure. I see it as a step in a peaceful transition...
 
As I said, at this time, I'm not ready for the transition. I am ready to talk to my oncologist though, and this article gives a great starting point for questioning him about his philosophy. I may just ask him "when do you think enough is enough?"
 
Laura
 
 
Dx 1/2011 2b, Gr 3, TNBC, AC/T chemo, L lumpectomy/re-excision/lymph node diss/rads. DX DCIS R Breast 4/2012 - Lumpectomy/Rads.
DX Lung Spine mets 5/2013 Carbo/Gemzar 10/2013 Xeloda 1/2014 Ixempra
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Post Options Post Options   Thanks (0) Thanks(0)   Quote dldlogan Quote  Post ReplyReply Direct Link To This Post Posted: Dec 21 2013 at 3:06pm
Steve,
I know this is an old post for you, but I found it at the best possible time.  I have an appointment on Monday to discuss what happens next.  The questions shown in this article are what I am taking with me.
 
I really hope to get some answers about my pathology.  I had questions while I was on chemo since I had only a very few number of side effects and they were very mild.  I thought they (the drugs) might have been "watered down".   I did the Chemo just to be sure this did not reoccur.  If my lymph node was negative and I did the chemo to get any free floating cells, why is this back?  It has only been 9 months since I finished chemo.  By the CT scan in June, these things had already started to grow 3 months after finishing chemo.
 
Maybe Chemo isn't the answer for me now.  At this point; I am all about quality and not quantity. 
 
Thank you,
Diana
Diagnosis 6/25/12
Biopsy 7/20/12
Mastectomy 8/15/12
IDC 1.9 cm TN Gr 3 Stage I
Chemo Start 9/27/12 ACT
Done 3/7/13
BRCA Neg
Reoccurence-Lung 12/3/13-Biopsy 12/16/13 Brain MRI 2/20/14 Stage IV
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Post Options Post Options   Thanks (0) Thanks(0)   Quote clifford1 Quote  Post ReplyReply Direct Link To This Post Posted: Feb 21 2018 at 9:43pm
Thank you for this post. My friend died from TNBC last year.  She had a recurrence that was Stage IV after 6 years and she immediately started chemo...she also had chemo 6 years ago. The Onco continued new drugs that the insurance didn't cover and the cost was astronomical.  I wanted to ask her, "is there something you want to do that you have not done?" She stayed in treatment until she died.  I am still grieving her loss.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote SagePatientAdvocates Quote  Post ReplyReply Direct Link To This Post Posted: Feb 21 2018 at 9:54pm
Dear Clifford,

I am on a plane from Houston where I was helping a wonderful woman and on my way to Chicago to help another. 

I am so very sorry for your loss. 

There are no easy answers. Just wanted you to know that I was touched by what you wrote.

with my love to all here, always,

Steve


I am a BRCA1+ grandson, son and father of women affected by breast/oc-my daughter inherited mutation from me, and at 36, was dx 2004 TNBC I am a volunteer patient advocate with SAGE Patient Advocates
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Post Options Post Options   Thanks (0) Thanks(0)   Quote tacoates Quote  Post ReplyReply Direct Link To This Post Posted: Feb 25 2018 at 10:19am
Dear Clifford,
 
I am so sorry for your loss.  My heart really aches for you.  I lost my best friend to TNBC also last year.  She was diagnosed back in our late 20s with HER+ and went through chemo and 13 years later, it came back in the other breast as TNBC Stage IV.  she fought for 5 years like I have never seen.  She is my inspiration as i'm now fighting the battle myself.  I pray she is the angel on my shoulder helping me to fight through and teaching me to make sure I don't make any of the mistakes we made with her journey.  I miss her every day and most times, like to pretend I never really lost her.  it will take time my friend but you will laugh and smile again and remember all the wonderful times you had :)
 
Hugs to you..
Tracey
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Post Options Post Options   Thanks (0) Thanks(0)   Quote mainsailset Quote  Post ReplyReply Direct Link To This Post Posted: Feb 25 2018 at 2:37pm
Dear Clifford, it's just so bloody hard to lose someone to this disease. Both my sisters and I had cancer at the same time. They both lost their battle but I made it through, so I've seen this disease from both sides as a patient and as someone who loved but in the end was an observer. There's just no words for the emptiness that follows you around.

Please take good care of yourself and thank you for reaching out to this family.
Mainy
dx 7/08 TN 14x6.5x5.5 cm tumor

3 Lymph nodes involved, Taxol/Sunitab+AC, 5/09 dbl masectomy, path 2mm tumor removed, lymphs all clear, RAD 32 finished 9/11/09. 9/28 CT clear 10/18/10 CT clear
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Post Options Post Options   Thanks (0) Thanks(0)   Quote clifford1 Quote  Post ReplyReply Direct Link To This Post Posted: Feb 25 2018 at 6:05pm
Thank you Mainy!  I am so sorry to hear about your sisters. How devastating?  I am praying for targeted treatment for triple negative.  Best, Clifford1

Edited by clifford1 - Feb 25 2018 at 10:03pm
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Post Options Post Options   Thanks (0) Thanks(0)   Quote clifford1 Quote  Post ReplyReply Direct Link To This Post Posted: Feb 25 2018 at 10:07pm
Hi Tracey,

Thank you for your reply. I am so sorry for your loss.  It is difficult.  Sending you continued health.  

Best, Marquita
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