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Topic: Why Cancer ‘Good News’ Stories Can Be Harmful by Karin Sieger

Forum: Managing Side Effects of Breast Cancer and Its Treatment —

This is a place to discuss concerns, tips and strategies for all types of side effects from all types of medications and treatments, (chemo/rads/hormonal/targeted/pain meds/etc.

Posted on: Nov 6, 2019 10:55AM

Bounce wrote:

I wasn't sure where to post this. If anyone has suggestions please let me know.

This is a link to an article written by Karin Sieger.

It said what I have felt for a long time. I am definitely interested in reading more of Karin's work.

Dx 8/5/2013, IDC, <1cm, Stage IA, Grade 2, 0/2 nodes, ER+/PR+, HER2- Surgery 8/31/2013 Lumpectomy: Right; Lymph node removal: Right, Sentinel Radiation Therapy 11/3/2013 Breast Hormonal Therapy 12/31/2013 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Nov 6, 2019 03:08PM Mavericksmom wrote:

Thank you for posting.

It brought to mind an event at the local hospital where I was treated for breast cancer the first time. There was a panel of doctors who treated breast cancer as well as a few breast cancer patients, who answered questions from the audience for Breast Cancer Awareness month.

One of the patients was asked about chemotherapy. She went on and on about how it was not hard to go through, she worked the whole time and the worst she felt was a little more tired than normal. I remember sitting there, having just had four rounds of chemo feeling like a failure because not only couldn’t I keep working, I was sick two of the three weeks after each dose. My white cells plummeted after round three and I had to eat only cooked food, no raw fruit or vegetables. I was told to limit exposure to other people especially anyone who had a cold. Not one person on the panel stood up and explained that everyone’s reaction to treatment is different.

I am also glad you posted this because I am feeling back to normal after dealing with breast cancer a second time and it reminded me to be careful when I relay my experiences with others.

Dx 6/6/2003, IDC, Left, 1cm, Stage IA, Grade 1, 0/24 nodes, ER+/PR+ Dx 12/4/2018, ILC, Left, 1cm, Grade 2, ER+/PR+, HER2- (FISH)
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Nov 7, 2019 09:34AM Bounce wrote:

Yes, indeed.

I often feel that I must be lacking in something seeing as I didn't find cancer to be a wonderful gift which enabled me to find all sorts of hidden talents and give direction and deep meaning to my life.

Reading Karin's article made me feel a lot better about myself.

Dx 8/5/2013, IDC, <1cm, Stage IA, Grade 2, 0/2 nodes, ER+/PR+, HER2- Surgery 8/31/2013 Lumpectomy: Right; Lymph node removal: Right, Sentinel Radiation Therapy 11/3/2013 Breast Hormonal Therapy 12/31/2013 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Nov 7, 2019 10:01PM WC3 wrote:


My great aunt worked through chemotherapy and I wanted to be one of those people who did as well, but nope. I consider my treatment fairly easy because I'm coming from a reference point of life long health problems and I thought I would be vomiting or on the verge of vomiting most of the time and wasn't, but I was either bed ridden or house bound most of the time, and was severely anemic and thrombocytopenic.

Dx 2018, IDC, Left, 3cm, Grade 3, ER+/PR+, HER2+ (FISH) Chemotherapy 5/31/2018 Carboplatin (Paraplatin), Taxotere (docetaxel) Surgery 11/14/2018 Lymph node removal: Left, Sentinel; Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Targeted Therapy Perjeta (pertuzumab) Targeted Therapy Herceptin (trastuzumab) Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant
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Nov 7, 2019 10:28PM TB90 wrote:

How do we then balance encouragement versus discouragement. Can we not exemplify both ends of the spectrum? I needed to hear positive stories, but loved the support and encouragement when struggling. The different threads here do seem to offer all options. I guess we just need to select what we need and stay away from what we do not. Breast cancer is so individual and so are our experiences. We should never feel pressured to minimize or emphasize our experiences to satisfy others.

Dx 11/28/2013, DCIS, Grade 2 Surgery 12/17/2013 Mastectomy: Left Radiation Therapy 2/19/2014 Breast
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Nov 7, 2019 10:44PM Cowgirl13 wrote:

Bounce, thank you so much for posting. I think its a very important article. I didn't just breeze through everything and am so glad to hear the other side of things.

Be the kind of woman that when your feet hit the floor each morning the Devil says: 'Oh crap! She's up! Dx 5/28/2009, IDC, Left, 2cm, Stage IIA, Grade 3, 0/4 nodes, ER+/PR+, HER2+ Surgery 6/18/2009 Chemotherapy 8/3/2009 Carboplatin (Paraplatin), Taxotere (docetaxel) Radiation Therapy 12/21/2009 Hormonal Therapy 2/23/2010 Arimidex (anastrozole)
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Nov 8, 2019 06:15AM - edited Nov 8, 2019 06:17AM by n504jb

With all due respect I differ with two assertions about good news. True, in certain individuals it can have a paradoxic effect but on balance, what rational human being would want to confront any challenge without hearing anecdotes from people who are doing better than expected? More importantly, our brains are hardwired with a "negativity bias" that can have significant effects on how we perceive information, process it, and act on it. Mindfully attending to good news can counter this bias.

As to the issue of "false hope" that is something of an oxymoron. As Sophie Savage observed in "HealthInsights U.K.,

"Either there is hope or there is none, but it can't be false or delusory or wrong. Hope is a projection into a possible future, a feeling that something wanted, desired or longed for could perhaps become a reality. That hope may not be met, but hope itself is real."

This reflects Ted Lawrence's observation that opposed to the Islamic belief in fate, "Nothing is written." Hope is our way of acknowledging that the improbable and seemingly impossible happens. It does not have to be rational. By its nature it looks beyond circumstances and envisions a possibility that can give us the resiliance to stay in the game when we would be inclined to lie down. Belief is a hard road to go. Hope is one much more easy to travel.

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Nov 8, 2019 01:29PM hapa wrote:

I feel like the good news stories are helpful to get people to that first chemo infusion. I was terrified that chemo was going to ruin my health and I'd be on the verge of death the whole time. But then I looked around at the various chemo threads on here and it seemed like everyone was getting through it, some had hospitalizations but others seemed to breeze right through. I decided to go to the first infusion, and if it sucked I could always just not go to the rest. I kept that mentality the whole way through, after the fourth infusion I felt like chemo was no big deal and I'd be fine. I was one of those who breezed through chemo and I'm glad I didn't just run scared from it under the assumption that it was always 100% horrible. But I also feel like a lot of these overly positive news stories downplay the seriousness of a cancer diagnosis. Especially the crap about so-and-so who has stage eleven cancer of the whatever but is running a marathon because he/she has decided not to let cancer stop them. And they completely gloss over the fact that this person's disease is incurable and he/she may well be dead before that race even happens.

Dx 3/20/2018, IDC, Right, 3cm, Stage IIIA, 3/18 nodes, ER+/PR+, HER2+ (FISH) Targeted Therapy 3/28/2018 Herceptin (trastuzumab) Targeted Therapy 3/28/2018 Perjeta (pertuzumab) Chemotherapy 3/28/2018 Carboplatin (Paraplatin), Taxotere (docetaxel) Surgery 8/22/2018 Lymph node removal: Right, Underarm/Axillary; Mastectomy: Right; Prophylactic mastectomy: Left; Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant Radiation Therapy 10/22/2018 Whole-breast: Lymph nodes, Chest wall Hormonal Therapy 12/21/2018 Arimidex (anastrozole), Zoladex (goserelin) Targeted Therapy Nerlynx
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Nov 9, 2019 07:41AM claireinaz wrote:

I think what really got me were the hackneyed cliches I heard, was told, or read: "chin up", "think positive", "this is temporary", "mind over matter", etc. At times I felt that my very real feelings of fear, disappointment, and grief were being marginalized. I agree with TB90. At times I felt stronger than other times, and I can also remember at least once where I curled up in a ball with my animals in bed, and stayed there for quite a few hours one day, crying, just feeling what I needed to feel.

I did seek out positive stories of positive outcomes throughout my tx--survivors who had + nodes like me who had lived decades, etc. because I needed to believe that I could be that person too, but the meaningless cliches of shallow encouragement weren't helpful.

Claire in AZ

9/29/11 ILC, 2 c. stage II grade 1, ER/PR+ HER2-, 6/11 nodes, lumpectomy, DDAC x 4, Taxol x 12, 33 rads, Tamoxifen/arimidex/aromasin, BMX/immed recon 7/3/13 "In the midst of winter, I found in me an invincible summer.” Albert Camus
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Nov 9, 2019 08:47AM GraceB1 wrote:

I tell people the side effects are on a bell curve. There's a chance you could have little or no side effects, that it all could be very doable. The greater chance is that you'll be in the middle somewhere and have SEs and can manage your way around them. Or you could end up like me on the short end of the stick and really have a tough time. There is no predicting which end you'll be on. You just hope for the best and endure through it. I also say it's like having a baby, no two women's stories are the same. They are a unique as we are.

Grace B I'm just special - primary neuroendocrine, less than .001% of all breast cancers. Start each day with gratitude. Dx 6/10/2013, Right, 6cm+, Stage IIIA, Grade 2, 2/11 nodes, ER+/PR+, HER2+ (FISH) Chemotherapy 7/12/2013 Adriamycin (doxorubicin), Cytoxan (cyclophosphamide), Taxotere (docetaxel) Surgery 1/8/2014 Lymph node removal: Right, Underarm/Axillary; Mastectomy: Right Targeted Therapy 2/12/2014 Herceptin (trastuzumab) Radiation Therapy 3/4/2014 Breast, Lymph nodes Hormonal Therapy 5/18/2014 Arimidex (anastrozole) Dx 1/29/2020, Right, <1cm, Stage IA, ER+/PR-, HER2- Hormonal Therapy Femara (letrozole)

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