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Topic: Mom refusing treatment

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

Posted on: Jun 2, 2020 01:04PM

caligirlm wrote:

Hi, I hope this is the right place to post this.

I am only a highschooler (sorry I lied about being 18), but my mom was diagnosed with IDC in late January. We don't know the stage because we haven't been able to biopsy the lymph nodes, but they said that her lymph nodes looked suspicious in the mammogram. I just don't know what to do and have no support because I don't know who to talk to.

My parents have refused all conventional treatment like chemo/radiation and they won't even do a surgery. My mom is scared of chemo/radiation and the side effects that will come with it and my dad just thinks that the medical community just wants to poison people and make money. They are trying things like Vitamin C, "anti-cancer" diets, Budwig, B17, putting Vitamin E oil on the tumor, etc.

It's been more than 4 months and it's clearly not working. My mom found a new lump under her armpit and she has been coughing a lot. She also has trouble keeping her food down and has been choking and gagging and having problems with acid-reflux. I am really scared that the cancer is spreading(not surprising if it is). Her tumor has ulcerated/fungated too. Obviously not entirely sure because the haven't been seeing any kind of doctor, but the skin on her breast looks exactly like what an ulcerated/fungated tumor looks like online. It has bled 3 times in the last 2-3 weeks. I've read that this is a stage 4 symptom/end of life symptom and I am so sad. I know that my mom is scared of it looking like that, but my dad will try to comfort her by saying that the "cancer is dying off". It's crazy. If anyone has more info on this, please let me know.

I feel like I am just watching her waste away. It's heartbreaking, especially since I feel like all this could have been avoided. I just don't get how two seemingly educated people can do this. There just seems to be so much denial/blind faith. So sorry for writing so much and for the graphic details. It's just so sad and I don't know if I should talk to them about it or just keep acting nonchalant. :(

And I am really scared of her dying. Not necessarily because she'll be gone, but because I know how much I will hate my dad and how much I'll hate myself for not doing more. I wish I had pushed her more to get it checked right when she found the lump. She waited more than a year and now she's still not doing anything. And I feel guilty that I am already anticipating the loss and that I have no hope in what they are doing.

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Jun 2, 2020 01:16PM ruthbru wrote:

What a terrible situation. Do your parents have a trusted older relative or friend who they might listen to? I would share this post with your mother, maybe it would help her look outside of herself to see how this is affecting the people who love her. Absolutely NONE of this is your fault, you can not force an adult to do anything, no matter how much you love them. I am so sorry you are going through this and hope you have people in your life that you can reach out to for support.

Heart

"Invisible threads are the strongest ties." Friedrich Nietzsche Dx 2/2007, Stage IIA, Grade 3, 0/11 nodes, ER+/PR-, HER2-
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Jun 2, 2020 01:30PM Moderators wrote:

Dear caligirlm,

We are so sorry that you are dealing with this at such a young age. We agree with ruthbru that you cannot be responsible for the decisions that your parents make about your mom's healthcare. Unfortunately in that you told us that you are a teenager, our rules state that you must be 18 to post on the discussion boards.

We have sent you a private message with other resources for continued support.

The Mods

To send a Private Message to the Mods: community.breastcancer.org/mem...
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Jun 2, 2020 01:33PM caligirlm wrote:

Thank you so much for your support and kind words. <3

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Jun 2, 2020 01:45PM berries wrote:

I am so sorry you are going through this. Sending you love.

And yes, absolutely tell her what you are feeling. Tell her you are afraid of her dying if she doesn't get treatment ASAP. Breast cancer can be treated and potentially cured... she just needs to get to a doctor. Could you write her a letter? Or set up a family meeting? I know this must be so hard on you to watch your mom deny getting treated.

Chemo is scary but it is NOT that bad, honestly. If you want me to speak to her, I'm happy to do that :) I've just been through chemo, radiation, two surgeries this past year and I still managed to run 2-4 miles a day during and after treatment. It IS tolerable and can save you.

Keep us posted xo

Dx 8/6/2019, DCIS/IDC, Left, 5cm, Stage IB, Grade 1, 4/4 nodes, ER+/PR+, HER2- Surgery 9/18/2019 Mastectomy: Left; Reconstruction (right) Chemotherapy 10/24/2019 AC + T (Taxol) Surgery 2/17/2020 Reconstruction (left): Silicone implant Radiation Therapy 3/31/2020 Whole-breast: Breast, Lymph nodes Chemotherapy 4/30/2020 Xeloda (capecitabine) Hormonal Therapy 5/8/2020 Arimidex (anastrozole)
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Jun 2, 2020 01:51PM - edited Jun 2, 2020 01:55PM by ShetlandPony

Caligirl, my heart breaks for you. Please do not feel guilty about not pushing more. You are the child, your parents are the adults. It was not your job. I do think that stopping acting nonchalant and telling them how you feel might be good for your self-respect (not playing their game). Being real and speaking up may be good for you. And it would be an appropriate dose of reality for them, but they sound very stubborn so it may or may not cause them to consider altering their course. But only you know how that will play ou with your parents. Being angry with them seems appropriate but if you can move toward acceptance eventually I think that will be better for you. Please take care of yourself and nurture relationships with wise adults who can support you now and in the future. Maybe a friend’s mom, an aunt, a teacher?

2011 Stage I ILC 1.5cm grade1 ITCs sn Lumpectomy,radiation,tamoxifen. 2014 Stage IV ILC mets breast,liver. TaxolNEAD. Ibrance+letrozole 2yrs. Fas+afinitor nope. XelodaNEAD 2yrs. Eribulin,Doxil nope. SUMMIT FaslodexHerceptinNeratinib for Her2mut NEAD
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Jun 3, 2020 02:57AM WC3 wrote:

caligirlm:

Please don't blame yourself for your parents' decisions. It's easy to think we are not doing enough in difficult situations, when, in reality, sometimes we have done all we could do.

Dx 2018, IDC, Left, 3cm, Grade 3, ER+/PR+, HER2+ (FISH) Chemotherapy 6/1/2018 Carboplatin (Paraplatin), Taxotere (docetaxel) Surgery 11/15/2018 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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Jun 16, 2020 10:39PM Kerwinklark wrote:

Oh God. We were in the same situation.

I am also blaming myself for not dragging my mother to an oncologist when she was still strong. She is now taking Xeloda, but we will switch treatment next week as our oncologist feels like its effects are too slow to see. However, we are thankful that Xeloda somehow treated the pain she felt before we sought for treatment

I hope there comes a time ASAP that you can convince your mom to go through treatment. I am also sorry this happened to you. Cancer sucks.

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Jun 17, 2020 06:35PM MinusTwo wrote:

Kerwin - I think the point is that it's your Mother's cancer. No guilt required. You need to listen to your Mother and take your cues from what she wants to do. It's not always easy to watch someone you love go through hell. Still, you can help the most by listening.

2/15/11 BMX-DCIS 2SNB clear-TEs; 9/15/11-410gummies; 3/20/13 recurrance-5.5cm,mets to lymphs, Stage IIIB IDC ER/PRneg,HER2+; TCH/Perjeta/Neulasta x6; ALND 9/24/13 1/18 nodes 4.5cm; AC chemo 10/30/13 x3; herceptin again; Rads Feb2014
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Jun 18, 2020 04:57PM Salamandra wrote:

I'm so sorry. I was a bit older than you when my mother was diagnosed, but not that much. She waited years after she'd noticed the lump, and though she accepted conventional treatments after that, it was too late.

Some things that have helped comfort me:

1) I can't know that things would have turned out differently otherwise. One of our neighbors caught a stage 1 breast cancer just a couple of month's before my mother's stage 4, and died not long after she did. It's possible that my mother could have done everything 'right' and this still would have happened.

2) My mom was her own person. In so many ways, such an amazing person, and part of that package was the denial. Sometimes, denial can be an adaptive tool for survival. Other times, the opposite. But you can't take apart a person and only get the parts you like. She did things her way and she was always going to do things her way, because that's who she was.

Do you have access to a therapist of your own now? Can you get some kind of support? It may be more available than you realize. Watching something like this happening while being so helpless to do anything (because you really don't have power here) is excruciating and can lead to real trauma.

I hope that you won't blame yourself, because there is nothing to blame yourself for.

Heart

Knowing what I know now, the advice I would give to my younger self is to give up all thoughts of influencing her behavior and just do whatever I can to spend as much time with her as I could and make that time as enjoyable as possible - not arguing about what she should be doing or not doing, but just being with her. I don't know that I would have been capable of following that advice at the time. But that would be my advice.

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 Hormonal Therapy 11/1/2018 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Radiation Therapy 12/3/2018 Whole-breast: Breast Hormonal Therapy 12/18/2019 Fareston (toremifene)
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Jun 20, 2020 08:46AM - edited Jun 28, 2020 02:14PM by Ileepak

Dear Caligirlm,

Your poor thing. Show your mom this post. My daughters are 21 and 23, I spent my life working and taking care of them . . . I love them so much. I put them through college . . . they are well on their way with beautiful lives and beautiful friends. I figured that I have done my job . . . I had a scare 12 years ago and got down on my knees and prayed that God keep me alive to raise them because I didn't have a mother . . . she died young . . . so I know what it is like to "not to have a mother".

Long story short, boom cancer last year, after finishing up my radiation, I started on tamoxifen . . . had terrible side effects and started losing my hair . . . . I said that is it . . . I am done . . . . I've had a long road and I am tired . . . I will take my chances . . . if I die . . . I die . . . I've been able to raise my kids thank the Good Lord.

My younger daughter Kelly sent me a card and said "please mom, do not stop your treatment" . . . we don't care if you are bald forever, we need you and we love you . . . our worst fear is that we are going to lose you". I had never looked at it from their point of view . . . . I figured they had good lives, they are independent . . . . I did what I could for them but that card made me think how hard it was for me raising them as a divorced mom at the time and no mother to help me or guide me and I thought, it wasn't all about me and that I loved them so much and want to be around to help them with their children some day.

So I have made another appointment with my medical oncologist this week!

I also worked in wound care for many years and I saw women like your mom that came in to us and as much as I am a supporter of holistic measures, we need "medicine" as well. So please tell your mom how your feel and please do not feel guilty . . . . . I know it easier said than done . . . you share how your feel . . . then the ball is in her court. I will pray for you . . . . God Bless you sweetheart!

Regards,

Eileen "ileepak"

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Jun 28, 2020 12:57AM caligirlm wrote:

Update: Thank you for all the encouragement, it pushed me to finally talk to my parents about their "treatment" and have a better understanding of what they are thinking. Basically their logic is that since there is no guarantee that anything will work to cure the cancer, they will choose the "less painful way" since chemo/radiation come with many side effects. If what they are doing doesn't work either, then they will resort to palliative/hospice care. I get where she and my dad are coming from and their fear, but how about if conventional treatment does work? I mean, it is way more researched and proven then what they are doing. How about if she did it and she becomes cancer free? But they won't even try. :( They have sent me to my grandparent's house because they don't like being confronted about this subject and I think they don't want to hear it. They say that I am contributing to a toxic environment that will interfere with my mom's healing process. I think at this point I just have to accept it and work on myself. Thanks again for all your lovely comments and support. You don't know how much it means to me and I wish you all strength and all the best.

ruthbru- Thank you for your comforting words and love! It made me feel a lot better.

berries- Thank you so much for the advice and your offer. Wow, you are so strong!

ShetlandPony- Thanks so much for the kind words and suggestions. They made me feel so much better and "lighter"

WC3- Thanks for the reassurance!!!

Kerwinklark- I am so sorry you are dealing with this too. My best wishes for your mom and her treatment, and for you too as you go through this challenging time. You are so strong <3

Salamandra- I am really sorry to hear about your mom. That must have been so hard. :( Thank you for sharing what has helped for you and for your thoughtful advice. Your words were really helpful and I hope I can strive to cherish the time I have with her and I guess be really more present. Thanks so much for the suggestions!

Eileen- Thank you for sharing your experience and your kind words! I have no doubt that you are an amazing mom and your daughters are so lucky to have you!

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Jun 28, 2020 09:32AM ruthbru wrote:

I'm glad that you did talk to your parents. If only so you can know that you did everything you could. They are adults, and as you sadly know, you can't make a grown up do anything they don't want to do, no matter how misguided and/or illogical their choices may be. Your parents are leaving you with a lot of difficult emotions to sort through and deal with. Please get some counseling; from a professional, a school counselor, spiritual leader, or other trusted adult. You can't change your parent's story but you can make sure you choose a different path as an adult. If you decisions based on fact, not fear (in many different situations life will throw your way), you will do very well.

All my best. Sending a virtual hug your way. Heart


"Invisible threads are the strongest ties." Friedrich Nietzsche Dx 2/2007, Stage IIA, Grade 3, 0/11 nodes, ER+/PR-, HER2-
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Jun 28, 2020 10:43PM - edited Jun 28, 2020 10:46PM by MinusTwo

As Ruth says, it's their cancer & their decision. I can understand why they thought your input was toxic if you wouldn't stop pushing. Do check into counseling for yourself. Good luck

Edited to say, I do understand how frustrated you are. But if my son tried to tell me what to do I would absolutely stop talking to him and ban him from my house. As I would do with any "friends" who couldn't accept my choices.

2/15/11 BMX-DCIS 2SNB clear-TEs; 9/15/11-410gummies; 3/20/13 recurrance-5.5cm,mets to lymphs, Stage IIIB IDC ER/PRneg,HER2+; TCH/Perjeta/Neulasta x6; ALND 9/24/13 1/18 nodes 4.5cm; AC chemo 10/30/13 x3; herceptin again; Rads Feb2014
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Jun 28, 2020 11:46PM exbrnxgrl wrote:

caligirlm,

It may sound harsh, but I feel the same way as minustwo. I have two adult daughters whose support and input I value greatly but whenever choices or decisions have been made I always have the final word. I have made it clear that it will always be this way.

I can only imagine how difficult this is for you but remember that maintaining a good relationship with your parents is ultimately more important during this time. Take care

Bilateral mx 9/7/11 with one step ns reconstruction. As of 11/21/11, 2cm met to upper left femur Dx 7/8/2011, IDC, Left, 4cm, Grade 1, 1/15 nodes, mets, ER+/PR+, HER2- Surgery 9/7/2011 Lymph node removal: Left; Mastectomy: Left, Right; Reconstruction (left); Reconstruction (right) Dx 11/2011, IDC, Left, 4cm, Stage IV, Grade 1, 1/15 nodes, mets, ER+/PR+, HER2- Hormonal Therapy 11/21/2011 Arimidex (anastrozole) Radiation Therapy 11/21/2011 Bone Hormonal Therapy 6/19/2014 Femara (letrozole) Hormonal Therapy Aromasin (exemestane)
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Jun 29, 2020 12:08AM - edited Jun 29, 2020 12:11AM by ShetlandPony

You know, Caligirl herself says, “I think at this point I just have to accept it and work on myself.“ I do not think we can assume that she “wouldn't stop pushing". None of us were there. Several BCO members suggested that caligirl tell her parents how she felt, and she did. She had not yet told them how she felt about what was happening! Who among us would not do the same if we saw someone we loved doing what appeared to be harmful? So she said her piece, if nothing else for her own peace of mind, and it sounds like having done that she will leave them alone as they request. It sounds to me like she does accept that it is her mother's decision to make. So give the poor girl some credit. Otherwise she's “damned if she does and damned if she doesn't." For her parents to call her “toxic" when she was understandably concerned — well it seems just as likely that the parents are name-calling because caligirl disagreed with them. Anyway, it is better for her to be out of the house so they cannot blame her for “interfering with the healing process” if her mom does not do well.

2011 Stage I ILC 1.5cm grade1 ITCs sn Lumpectomy,radiation,tamoxifen. 2014 Stage IV ILC mets breast,liver. TaxolNEAD. Ibrance+letrozole 2yrs. Fas+afinitor nope. XelodaNEAD 2yrs. Eribulin,Doxil nope. SUMMIT FaslodexHerceptinNeratinib for Her2mut NEAD
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Jun 29, 2020 09:47AM - edited Jun 29, 2020 01:27PM by ruthbru

Remember also that she is just a teenager who still really needs a mother, and is in a terrible situation with no life experience on how to handle it. It's an entirely different dynamic with adult children.

"Invisible threads are the strongest ties." Friedrich Nietzsche Dx 2/2007, Stage IIA, Grade 3, 0/11 nodes, ER+/PR-, HER2-
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Jun 29, 2020 10:46AM MelissaDallas wrote:

I personally find it pretty heartbreaking that they would banish a minor child from their home for daring to be scared and voicing that

LCIS, extensive sclerosing adenosis, TAH/BSO & partial omentectomy for mucinous borderline ovarian tumor.
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Jun 29, 2020 11:52AM Peregrinelady wrote:

My suspicion is that the husband is encouraging the lack of medical help and does not want the daughter interfering, but I am a cynical person who watches a lot of crime shows. I find it abusive and horrifying for them to put their daughter through this.
Dx 4/24/2015, IDC, Left, 2cm, Stage IIB, Grade 2, 1/2 nodes, ER+/PR+, HER2- Hormonal Therapy 6/1/2015 Liquid tamoxifen (Soltamox) Surgery 4/17/2016 Mastectomy: Left, Right; Prophylactic ovary removal; Reconstruction (left): DIEP flap; Reconstruction (right): DIEP flap Hormonal Therapy 7/31/2016 Arimidex (anastrozole)
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Jun 29, 2020 01:18PM santabarbarian wrote:

caligirl, I cant imagine a more horrible situation to be in. I am so sorry that you are in it. You sound like a very loving and level headed person. It is SO PAINFUL to watch someone we love make choices we feel are damaging or foolish. It's awful. You said your piece which is important so you do not blame yourself for not speaking up. I am so sorry for the situation you are in. You seem like a very mature and decent daughter who cares a great deal. Hugs to you.

pCR after neoadjuvant chemo w/ integrative practices; Proton rads. Dx 7/13/2018, IDC, Left, 3cm, Stage IIB, Grade 3, ER-/PR-, HER2- (FISH) Chemotherapy 8/12/2018 Carboplatin (Paraplatin), Taxotere (docetaxel) Surgery 12/27/2018 Lumpectomy: Left Radiation Therapy 2/11/2019 Whole-breast: Breast, Lymph nodes
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Jul 1, 2020 05:39PM - edited Jul 2, 2020 09:19AM by Ileepak

Dear Caligirl,

Listen sweetheart . . . you follow your heart and don't give a second thought to those who are not so kind . . . they are fighting their own battle. My father used to say "follow you heart and you will make the right decision" . . . I loved my dad . . . he raised me and my brothers . . . I try to emulate what he taught me: kindness, compassion and empathy . . . three words not emulated enough in this world unfortunately. My mom died young . . . she was a tough Irish lady "her way or the highway" . . . I was afraid to go to her with "anything" . . . I spent my life being the exact opposite with my daughters. I am not arguing with the concept that the ultimate choice and the decisions of your mom's life is her own . . . I also make the final decisions in my life . . . but what is life . . . . life for me, is about the relationships I have . . .the people I love and who love me . I can't take my house, money, or pride with me when I die but I can leave a loving legacy behind. Life isn't all about me . . so when I selfishly think some days that "I'm tired . . . I've had enough . . . I start to think unselfishly . . . I want to be around as long as I can to love my daughters . . . to be here for them when they get married, and they have children of their own . . . it is all about who loves me . . . who surrounds me with love and the last thing I would ever want to do, would be to "banish" my daughters or any of my loved ones because they love me enough to want me to live . . . you don't have to banish anyone . . . you can simply listen and understand how others feel . . . how this affects their lives . . . . that is love . . that is empathy . . . that is compassion and kindness. Sickness and tragedy can bring out the best in some and the worst in others . . . I want to be the best, like my dad . . . if you love those around you . . . . they will come back with that love ten-fold . . . I always came back to my dad and loved him because he loved me . . . love your mom always and know if your heart that you did the best you could and that is all you could do . . . the rest is in God's hands. You have done everything you can . . . . God bless you Cali! You and your family are in my thoughts and prayers.

And Shetland Pony . . . well said!!!!!!

Regards,

Eileen "Ileepak"

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Jul 1, 2020 11:18PM edwards750 wrote:

Caligirl - I second what everyone else has posted about you not feeling guilty. It is hard to understand their thinking but it is their call.

There are a number of women who elect NOT to do conventional treatments for the same reasons your parents have. There are no guarantees but for me I was too scared not to. I didn’t want to look back years later and wonder what if...

My nurse advocate told me her mother had breast cancer and needed the treatments but she refused. She said she begged and pleaded but her mother stood firm. Sadly her mother passed away soon after.

I don’t understand banishing you even though I think they know what you are saying is true they just don’t want to hear it.

We are praying for you and your parents. Keep the faith.

Diane

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Jul 2, 2020 09:25AM Ileepak wrote:

Dear Edwards 750,

I worked in wound care for years, and have seen what cancer can do, especially left untreated and have unfortunately seen many who have opted out of treatment . . . my heart goes out to Caligirl and her family.

Regards,

Eileen "ileepak"

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