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Topic: Support For My Daughter

Forum: IDC (Invasive Ductal Carcinoma) — Just diagnosed, in treatment, or finished treatment for IDC.

Posted on: Mar 14, 2019 12:04PM

Moongoddess67d wrote:

Hello,

My daughter had a breast biopsy this past Friday and has learned that the results are positive for malignancy. I will be listening in on a call that she will be participating in tomorrow with the Mayo Clinic’s Breast Center. In addition, I will accompany her to an appointment at the center next Thursday. Aside from having read a pathology report that she received, this is all of the information that I have about her situation at this time. I included this known info as part of my profile created here for discussion purposes going forward. Ultimately, I would like her to join this group and utilize the seemingly incredible support and very helpful information being provided/shared here.

I am posting this partially to introduce myself but also to ask for suggestions regarding how I can best support my daughter particularly during these very hard, early stages of not knowing the extent of her condition. For example, she has focused on the DCIS part of her diagnosis but is either totally unaware or in denial about the IDC component.

I would appreciate hearing your thoughts about how I can help her understand what I am learning about her cancer but not totally overwhelm and shock her in the process. I am a retired nurse and I think part of my problem may be letting go of that role to be what she may need most at this time, a loving, caring, supportive mother?

Thank you for your time and interest I think that finding this group and you may be the most important thing that I could have accomplished at this time




Dx 3/8/2019, DCIS/IDC: Cribriform, Left, 2cm, Grade 1
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Mar 14, 2019 12:22PM santabarbarian wrote:

In some ways it's harder to be the loved one than the patient. You feel great worry and concern, but can't really take action on it. I think gathering information can be really helpful and as a nurse you will know the difference between science and junk science. I am a great researcher but my Mom wanted to do *something* and I told her to google away and email me whatever seemed relevant. (My Mom is ancient and much of what she found was not that relevant-- out of date, etc-- but she felt like she was helping!)

Being the "ears" or the note taker during appointments, as it sounds like she is open to, is very helpful. Being someone who can answer nurse-ish questions would also be a help.

I think there is a component of trauma and shock that may make it hard to absorb some of the details of the diagnosis. Her doctors will lay it out for her... that does not need to be your role. There is no way to avoid reality when they tell you you will be doing chemo, etc...

Good luck to your daughter!

pCR after neoadjuvant chemo Dx 7/13/2018, IDC, Left, 3cm, Stage IIB, Grade 3, ER-/PR-, HER2- (FISH) Chemotherapy 8/13/2018 Carboplatin (Paraplatin), Taxotere (docetaxel) Surgery 12/27/2018 Lumpectomy: Left Radiation Therapy 2/11/2019 Whole-breast: Breast, Lymph nodes
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Mar 14, 2019 12:41PM Moongoddess67d wrote:

santabarbarberian (Love your screen name, it gave me a little chuckle that is greatly appreciated right now), Thank you for your speedy response and for reinforcing some of the thousands of thoughts that are bombarding my brain right now. I will focus on educating myself so that when the care team provide info for her, I may be able to help answer guestions as needed. I need to remind myself that people absorb and handle new information differently, not everyone soaks like a sponge and are ready for the next big step.

Dx 3/8/2019, DCIS/IDC: Cribriform, Left, 2cm, Grade 1
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Mar 14, 2019 01:12PM Moderators wrote:

Dear Moongoddess67d,

Welcome to the BCO community. We are so sorry for your daughter's diagnosis but so glad that you reached out for information on how to support her. We hope that you will find information and support for yourself as well. You may also want to visit the forum for Caregivers so that you can also connect with others who are caring for someone with cancer. Let us know if we can be of help as you navigate your way around.

The Mods

To send a Private Message to the Mods: community.breastcancer.org/mem...
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Mar 14, 2019 02:16PM AliceBastable wrote:

How old is your daughter? From your post, she sounds extremely young, perhaps in her teens. Or could it be that you are having problems seeing her as an adult woman, capable of making her own decisions about her body?

Endometrial cancer 2010, basal cell multiples, breast cancer 2018, kidney cancer 2018. Cancer's a bitch, but I'm a bigger one with more practice. Dx 5/2018, ILC/IDC, Left, 2cm, Stage IA, Grade 2, 1/1 nodes, ER+/PR+, HER2- Surgery 7/10/2018 Lumpectomy: Left; Lymph node removal: Sentinel Surgery 8/7/2018 Radiation Therapy 10/28/2018 Whole-breast: Breast, Lymph nodes
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Mar 14, 2019 03:23PM Moongoddess67d wrote:

Moderators, Thank you for the warm welcome and for the “caregiver” form link. I looked around for something like this but without successful results. I will be sure to check this out. I’m still getting to know this site and stumbling a bit...but I’ll get there

Dx 3/8/2019, DCIS/IDC: Cribriform, Left, 2cm, Grade 1
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Mar 14, 2019 03:28PM Moongoddess67d wrote:

Alice, my daughter is 47 years old. My concern at this time is her ability to understand the information that is being presented to her. The struggle that I may be having is stepping out of the teaching role and giving her the time that she needs to digest the information being presented. I know how to verify a person’s comprehension and my nature is to help when I identify a potential problem with this

Dx 3/8/2019, DCIS/IDC: Cribriform, Left, 2cm, Grade 1
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Mar 14, 2019 03:31PM Fritzmylove wrote:

As a young (35) woman going through treatment for cancer, I can tell you what I needed most from my mother was knowing she would be there when I needed her. If I needed an extra set of ears at an appointment, or someone to watch my young kids while I recovered from chemo or surgery, she was there. I think if she ever tried to research my cancer for me or push me towards resources, no matter if was coming from her loving concern, it would have pissed me off. I needed to learn how to cope with the shock of diagnosis in my own time in my own way. Once she wraps her head around everything, I bet she’ll come to you for advice or support. For now just be there for her.

CHEK2+ Dx 9/19/2018, IDC, Right, 6cm+, Stage IIIA, Grade 2, ER+/PR+, HER2- Chemotherapy 10/1/2018 TAC Surgery 2/20/2019 Lymph node removal: Right, Sentinel; Mastectomy: Right; Prophylactic mastectomy: Left; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Hormonal Therapy 3/4/2019 Femara (letrozole), Zoladex (goserelin)
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Mar 14, 2019 04:57PM Moongoddess67d wrote:

Fritzmylove, Thank you for sharing your perspective and feelings. I really value your opinion as your response is what I need to hear at this time. Although my daughter lives in a different state, I am afforded the ability to pack up and stay with her and the family for as long as they need me there. I’ll be heading there next week and accompanying her to her first appointment at the Breast Center.

Dx 3/8/2019, DCIS/IDC: Cribriform, Left, 2cm, Grade 1
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Mar 14, 2019 05:04PM MelissaDallas wrote:

I have to say, when I had another cancer, my mom was really there for me, but she just about drove me insane and pissed me off infantalizing me. She would try to talk for me when a doctor asked me a question. She would snatch things off my meal tray in front of me to open them for me when I was perfectly capable-I told a friend I was surprised she wasn’t following me into the bathroom and snatching the TP out of my hand to wipe my bottom for me. I rationally understand she just needed to be DOING something, but it about drove me crazy. Just listen to her. It is really common on here for newly diagnosed women with mixed in situ and invasive cancer to post on the DCIS threads but they figure things out pretty quickly.

LCIS, extensive sclerosing adenosis, TAH/BSO & partial omentectomy for mucinous borderline ovarian tumor.
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Mar 14, 2019 05:32PM Moongoddess67d wrote:

MellisaDallas, Thank you for sharing your insightful thoughts and feelings. I think that I just need to temper my knowledge of some breast cancer medical terms (certainly not all of them...far from it) with an understanding forher need to digest information in her own time.

Dx 3/8/2019, DCIS/IDC: Cribriform, Left, 2cm, Grade 1
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Mar 14, 2019 05:56PM MelissaDallas wrote:

But maybe not. Mom and I are daughter and granddaughter of an MD and RN and I worked in health insurance underwriting and pharmacy & hospital for many years. We were both medically educated, so it had nothing to do with who knew more

LCIS, extensive sclerosing adenosis, TAH/BSO & partial omentectomy for mucinous borderline ovarian tumor.
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Mar 14, 2019 05:56PM - edited Mar 14, 2019 05:59PM by wrenn

I agree with others that you should be available for practical help but not to advise. My daughter recently had a baby and reminded me that sometimes my "help" made her feel like I thought she was unable to figure things out on her own. I had been "helping" to make myself feel useful and I was grateful to her for reminding me of what was useful to her.

ETA that this statement by you "my nature is to help when I identify a potential problem with this" makes me think that you may be of the opinion that you know best. My sister who is a nurse practitioner and assumed she knew best was the most destructive to me and my sister who came to sit with me was my saviour.

Metaplastic IDC Triple negative...Tumour is 1.5cm. BMX Aug. 16th. Chemo cancelled after one dose due to complications. Dx 7/25/2013, IDC, Left, 1cm, Stage IA, Grade 3, 0/6 nodes, ER-/PR-, HER2- Surgery 8/16/2013 Lymph node removal: Left, Sentinel, Underarm/Axillary; Mastectomy: Left, Right
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Mar 14, 2019 06:41PM - edited Mar 14, 2019 06:42PM by MexicoHeather

While it is good that you care, a 47 year old woman might not want you there on the first appointment. My Mom was great in knowing when to support me and when to step back.

Dios es Amor. Dx 10/1/2016, IDC, Right, 3cm, Stage IIB, Grade 3, 3/17 nodes, ER+/PR+, HER2- Surgery 12/4/2016 Lymph node removal: Right; Mastectomy: Right Surgery 12/4/2016 Lymph node removal: Underarm/Axillary; Mastectomy: Right Chemotherapy 1/18/2017 AC + T (Taxol) Radiation Therapy 5/9/2017 Whole-breast: Lymph nodes, Chest wall Surgery 10/9/2017 Prophylactic ovary removal Surgery 12/5/2018 Hormonal Therapy Arimidex (anastrozole) Hormonal Therapy Femara (letrozole) Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Mar 14, 2019 07:06PM - edited Mar 14, 2019 07:07PM by Moongoddess67d

I find that most of the initial replies best helped me in terms of understanding my concerns at this time. I am not making any decisions for my daughter and will provide my opinion if and when asked to do so. My daughter wants me at her side during her forthcoming appointment and beyond, I confirmed this with her and wouldn't assume this.

My biggest challenge is knowing that my daughter believes that she onlyhas a cancer in situ and this is not the case. Needless to say, I once again thank the advice above to let the care team clarify this misgiving for her and for me to focus on providing the emotional and other support that she will need going forward.

I am so eternally grateful for the very close relationship that we have always had and will continue to experience.

Dx 3/8/2019, DCIS/IDC: Cribriform, Left, 2cm, Grade 1
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Mar 14, 2019 07:30PM AliceBastable wrote:

I think her doctors will go over the details of her diagnoses and treatment options with her.

Endometrial cancer 2010, basal cell multiples, breast cancer 2018, kidney cancer 2018. Cancer's a bitch, but I'm a bigger one with more practice. Dx 5/2018, ILC/IDC, Left, 2cm, Stage IA, Grade 2, 1/1 nodes, ER+/PR+, HER2- Surgery 7/10/2018 Lumpectomy: Left; Lymph node removal: Sentinel Surgery 8/7/2018 Radiation Therapy 10/28/2018 Whole-breast: Breast, Lymph nodes
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Mar 16, 2019 08:13AM - edited Mar 16, 2019 08:18AM by Salamandra

I wish I had had either of my mothers alive and well to be with me through this journey - I lost my biological mother to breast cancer almost twenty years ago. In my nostalgic imagination, she would have been the perfect support, and never ever annoyed me :) In real life, I'm sure we would have butted heads.

I agree that it is very easy to be sensitive from any kind of advice from mom, no matter how well meant. I think be very careful to wait for her to ask for your thoughts, and even then, give it as gently as possible, with more performative humility than you'd think you'd need. E.g., 'this is what it sounds like to me, but what do you think? I'm not sure what I would do if I were you, but maybe xyz?' and keep the focus on her and support her in developing her own positions. That is a key part of education, as I'm sure you know. When she does turn to you to discuss things, don't assume she's asking for advice, but keep the focus on her and ask her follow up and clarifying questions for her own thoughts. Don't try to restate or summarize her position, but just reflect back what you are hearing, one little piece at a time.

Be ready to give her time and space, even though you are staying with her, and also be ready for her to be a little unreasonable at times. You are a safe person for her to be a little unreasonable with, and not need to be grown up and strong in front of.

I couldn't always predict when I would want solitude and when I would want company. I had someone come stay with me for my lumpectomy recovery but it turned out I didn't really need it and she wasn't really the right person for it. She needed a bit too much direction and attention from me, but we found our equilibrium and she spent time enjoying my city and I had the quiet days I needed.

Trust that she will find her understanding and her own way. No matter how much your sweet precious momma instincts are raring to go to step in and fight for her, ultimately she must do this her own way. That is also the best thing for her and the relationship long term, no matter how sure you are in any particular instance that she is not making the medically optimal (in your view) decision or approach that you wish she would.

Maybe think about how you'd like her to treat you, if/when the time comes the shoe is on the other foot and she is taking an meaningful role in your eldercare :)

Dx at 39. 1.8cm. Oncotype 9. Dx 9/19/2018, IDC, Right, 1cm, Stage IA, Grade 2, 0/3 nodes, ER+/PR+, HER2- (FISH) Surgery 10/17/2018 Lumpectomy; Lymph node removal: Sentinel Radiation Therapy 12/2/2018 Whole-breast: Breast Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Mar 17, 2019 12:51PM - edited Mar 17, 2019 12:51PM by Moongoddess67d

Dear Salamandra,

Deepest apologies for my delay in responding. There are times that I just need to tuck myself away from everyone and everything, but I do not mean to diminish the importance of your kind, considerate and generous response to my post. I have bolded my thoughts throughout your response and Thank you so much for the time and thought that you took replying to my post.

I wish I had had either of my mothers alive and well to be with me through this journey - I lost my biological mother to breast cancer almost twenty years ago. In my nostalgic imagination, she would have been the perfect support, and never ever annoyed me :) In real life, I'm sure we would have butted heads. I agree that it is very easy to be sensitive from any kind of advice from mom, no matter how well meant. I think be very careful to wait for her to ask for your thoughts, and even then, give it as gently as possible, with more performative humility than you'd think you'd need. E.g., 'this is what it sounds like to me, but what do you think? I think that yours is excellent advice and it gives me pause. Rather than assuming what her need may be, ask for clarification. Never assume. I'm not sure what I would do if I were you, but maybe xyz?' and keep the focus on her and support her in developing her own positions. That is a key part of education, as I'm sure you know. When she does turn to you to discuss things, don't assume she's asking for advice, but keep the focus on her and ask her follow up and clarifying questions for her own thoughts. Generally speaking, we all do well asking more questions vs. giving our opinions and or providing direction. Don't try to restate or summarize her position, but just reflect back what you are hearing. Be ready to give her time and space, even though you are staying with her, and also be ready for her to be a little unreasonable at times. I cannot tell you how much I appreciate reading this. I think that I can see myself needing to know that she is on the right path when in fact, it is more important for me to understand where on the path she actually is. You are a safe person for her to be a little unreasonable with, and not need to be grown up and strong in front of. So good for me to read this. I feel this way, but will I recognize her need when the time comes? So much more likely having read your advice. Trust that she will find her understanding and her own way, and no matter how much your sweet precious momma instincts are raring to go to step in and fight for her, ultimately she must do this her own way and it is the best thing for her and the relationship long term, no matter how sure you are in any particular instance that she is not making the medically optimal (in your view) decision or approach that you wish she would. Maybe think about how you'd like her to treat you, if/when the time comes the shoe is on the other foot and she is taking an meaningful role in your eldercare :) so insightful. Thank you. I couldn't always predict when I would want solitude and when I would want company. I had someone come stay with me for my lumpectomy recovery but it turned out I didn't really need it and she wasn't really the right person for it. She needed a bit too much direction and attention from me, but we found our equilibrium and she spent time enjoying my city and I had the quiet days I needed. I wish you the best of luck going forward and cannot thank you enough for taking the time to share with me your most personal and intimate thoughts.

Dx 3/8/2019, DCIS/IDC: Cribriform, Left, 2cm, Grade 1

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