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Topic: Immeasurably Guilty...How to deal?!

Forum: Caring for Someone with Breast cancer —

A place to share your struggles and concerns about supporting and caring for a person you love diagnosed with breast cancer with others who understand.

Posted on: Mar 31, 2018 03:44PM

DaughterFriend wrote:

On Monday, my mom, who is a divorced, self-employed, middle-aged woman, was diagnosed with IDC (HER2+). Our world came crashing down when we got the news, particularly because we've been down a similar road before. My brother was diagnosed with Wilm's Tumor during his infancy. I'm really concerned about my mom and am trying to be strong for her but I don't know how. She has always been the rock in our family. I'm terrified and feel guilty about spending any time on matters that don't involve researching breast cancer, figuring out a way to pay for her treatment, or supporting her in every way possible. There's got to be a way to fight this horrible disease and maintain some semblance of sanity and self. Any tips?

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Mar 31, 2018 04:08PM Moderators wrote:

Hi Daughterfriend, and welcome to Breastcancer.org,

We're so sorry you find yourself here, and we're so sorry to hear of your mom's diagnosis. You're sure to find this Community a wonderful source of advice, information, and support.

Please try not to beat yourself up about not having all the answers -- there's very little you can do to impact your mom's health, so just be there for her, help her around the house, cook meals, drive her places, and simply be there for her when she needs you. We're sure practical assistance will be much appreciated!

Please check in often, ask lots of questions, and get the support you need. We're all here for you!

--The Mods

To send a Private Message to the Mods: community.breastcancer.org/mem...
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Apr 1, 2018 03:27PM edwards750 wrote:

So sorry about your Mom. My mother had BC too so no surprise my sister and I have it too. She was the strong one too. BC knocks you for a loop but there is plenty of reason to be optimistic. They have come a long way in research and treatment since my mother was DX and even me almost 7 years ago.

I think the Mods said it all. Be there for her when you can. You have to keep on living too. Nothing to feel guilty about. Unfortunately life doesn’t stand still while we deal with this insidious disease.

She knows you love her. I had a FT job and family and my sister did too plus she lived out of town. We all did as much as we could. My Mom passed away years ago but not from BC.

So keep the faith and keep us posted.

Diane

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Apr 1, 2018 08:13PM Denise-G wrote:

DaughterFriend - send my words of encouragement to you. You can get through this while supporting your mom and still having a life. But it will change for quite some time.

Myself, my mom and sister were all diagnosed within 3 years. Not easy, but we are all still here. Sending our encouragement to you!

www.denise4health.wordpress.com my BC Blog with over 200 informative posts about all aspects of BC - stop by! Myself, my mom, and sister were all diagnosed with BC within 3 years. What a ride! Dx 10/10/2011, IDC, Left, 6cm+, Stage IIIA, Grade 2, 9/14 nodes, ER+/PR+, HER2+ (FISH) Surgery 11/22/2011 Lymph node removal: Left, Underarm/Axillary; Mastectomy: Left Chemotherapy 12/26/2011 AC + T (Taxol) Targeted Therapy 2/27/2012 Herceptin (trastuzumab) Hormonal Therapy 10/10/2012 Arimidex (anastrozole)
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Apr 2, 2018 08:54AM - edited Apr 2, 2018 08:54AM by keepthefaith

DF, There is nothing you should feel guilty about....really. It never dawned on me that my DD could feel guilty when I was DX'd. Thanks for that perspective. I, myself was feeling guilty for "bringing" BC into our lives and causing my kids to feel distraught and worried. I am supposed to be the protector. My DD called me almost every day to check on me...we talk almost every day anyway. But, she had 3 kids at the time and one on the way! So, her physically helping me was almost impossible. Just be there for her and help when you can. Like mods said, just taking her to an appt now and then, or cooking when you can, is an immense help. She will probably surprise herself and you, with how strong she is. I think most of us have a vision of being out of it, vomiting our guts out and laying in bed for months on end, when we are in treatment. It's just not like that. Just ask her what she needs and be there for her when you can. She may have a nurse navigator or social worker at the hospital that can guide her and give her resources, if she needs them. BC takes a toll on everyone involved. It's okay to be terrified. One day at a time. You will get through this!

((HUGS))

Dx 9/17/2013, IDC, 1cm, Stage IA, Grade 2, 0/3 nodes, ER+/PR+, HER2- Surgery 10/17/2013 Lumpectomy: Right; Lymph node removal: Right, Sentinel Chemotherapy 12/2/2013 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Chemotherapy 12/25/2013 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Chemotherapy 1/15/2014 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Chemotherapy 2/10/2014 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Radiation Therapy 3/31/2014 Breast Hormonal Therapy 5/22/2014
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Apr 3, 2018 08:34PM DaughterFriend wrote:

Keepthefaith, thanks for your kind words. I just envision the worst and like you said treatment is just not necessarily like how I envision it. Your family sounds a lot like mine. My mom is the protector and now the roles have changed a bit; I need to pull it together and be strong for her. Like your daughter, it will be hard for me to physically help my mom because we live about 1200 miles apart (I'm in our home state of Texas and she's on the east coast) but we talk every day and I'll be by her side during her upcoming surgery. I suppose I need to be grateful that I can do something for her.

Thank you for being a light amidst all this darkness! Sending hugs your way too!

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Apr 4, 2018 11:02AM stexas wrote:

As a mother of four grown children I never expected them to feel responsible for me or my cancer. I would never want them to spend money on my care when there are so many programs out there to help people. We have always had health insurance..

We are lucky we pay $250.00 a month for my insurance through my husbands work and the insurance has been great. We have a $1500.00 deductable per year $50.00 copays for dr appts. and everything has been covered at 100%.

The only bill summary I saw was for the lumpectomy and it was $75,000 of course then I had a mastectomy after that and the third surgery was to remove a chemo port that was needed I have not seen those bill summaries.

I have just completed 6 1/2 weeks of radiation that was covered at 100%.

Cancer is not a cheap thing I figure mined totaled 200 - $300,000 so far and I just started all this 6 months ago. I will be on continual treatment for years to come.


Dx 12/1/2017, DCIS/IDC, Right, 1cm, Stage IB, Grade 2, 1/6 nodes, ER+/PR+, HER2-
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Apr 4, 2018 11:27AM mustlovepoodles wrote:

DaughterFriend, what you are experiencing is false guilt. You did not cause this cancer snd you have no control over this cancer. Therefore, you have no guilt. Let it go.

My kids were 23 & 30 when i was diagnosed. I did not for one second expect them to drop everything else in their lives to attend to me. I'm a big strong girl, 59 at the time. When i lost my hair my DD wanted to shave hers off. I wouldn't stand for it! I did not want anything about their daily lives to change for me.

I do understand your feelings. I just lost my mother to kidney cancer. I did what i could to help her and i sometimes feel sad that I couldn't do more. She would not want me to feel guilty. So, i have let that false emotion go. I miss my mom, but i do not feel guilty.

Oncotype 23. Positive for PALB2 & Chek2 gene mutations. My breasts are trying to kill me! Dx 7/20/2015, DCIS/IDC, Right, 1cm, Stage IA, Grade 3, 0/2 nodes, ER+/PR-, HER2- Surgery 8/20/2015 Lumpectomy Surgery 9/3/2015 Lumpectomy: Right Chemotherapy 10/19/2015 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Surgery 2/4/2016 Prophylactic mastectomy: Left, Right Surgery 10/19/2016 Hormonal Therapy Femara (letrozole) Surgery
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Apr 4, 2018 11:35AM Icietla wrote:

DaughterFriend, I am sorry about your Mother's diagnosis and her situation without health care insurance.

stexas is right -- cancer is very expensive, and there is financial aid available to help all who qualify.

Besides surgery and radiation treatment, chemotherapy will likely be recommended for your Mother's case. Genetic testing may also be recommended. All these things are very expensive.

As with other health care crises, without health care insurance or other arrangements to keep the costs down, charges for services may be billed at several times the rates otherwise limited by health care insurance.

>>I have about $11k in savings for her but I know that's not going to be enough to cover her living expenses and treatment.<<

>>I'm willing to get on a payment plan but I just don't want providers to deny her at the outset.<<

Please do not impoverish yourself. Please do not defeat your prospects for future financial security. It is needless. It is wrong. Supporting your Mother in ways that would matter does not require sacrifice like that on your part.

Peace.

My latest (Stage IVB) diagnosis is almost certainly of another distant primary type. To the best of my information and belief, I am still apparently what we call NED as to breast cancer, doubtless thanks to Letrozole. Dx 2/12/2016, ILC, Right, Stage IIA, Grade 1, 0/13 nodes, ER+/PR+, HER2- Surgery 2/19/2016 Lymph node removal: Right, Sentinel, Underarm/Axillary; Mastectomy: Right; Prophylactic mastectomy: Left Hormonal Therapy 4/1/2016 Femara (letrozole) Surgery 4/25/2016 Prophylactic ovary removal Dx 8/2018, Stage IV
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Apr 6, 2018 07:32AM edwards750 wrote:

I agree with Icietla don’t put yourself in harms way financially. That’s generous of you but you can only do so much and don’t feel guilty if you can’t.

We have insurance but a large deductible. We reached that deductible in 2 months soI know how expensive the surgeries and treatments are. Good grief we got bills from labs, doctors, etc. it seemed everyone had a hand in my treatment costs.

I arranged payments. It took awhile to pay them off but they agreed to it. I’m sure it’s a completely different story when you don’t have insurance. I’m saddened by the number of women who have to worry about the financial end with so much else to deal with.

Don’t let them manipulate or intimidate you about payments. Even with insurance we were pressured to pay up. BC, our insurance carrier, said not to pay anything until we got the EOB from them. We didn’t.

I hope you find resources who can help.

Diane

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Apr 6, 2018 07:43AM edwards750 wrote:

stexas - Wow I wondered how much my lumpectomy was. Never saw the bill. I had to go back and have my BS even the margins. Idk the cost of that either plus I had 33 radiation treatments. We were at 100% by then thankfully. There is no telling what that cost or how we would have paid for that without insurance.

There are a number of women on this website who have had to empty savings accounts to pay for treatments. The stress of that alone takes its toll.

There should be more emphasis on resources to help pay for treatment. What happens if you can’t?

Diane


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Oct 10, 2018 09:12AM Parrynd1 wrote:

DaughterFriend

First of all I’m sorry you and your mom are going through this, but I’ll wish the best for you and keep your mom in my thoughts. As someone going through a stage iv bc diagnosis I’ll add that one of the best things my friends and family can do for me is treat me normal. Trusting that I will update them on anything significant. Being overly concerned can seem like a good way to show you care and that you are there, but for me the biggest gift is people not acting like the sky is falling all the time and treating me like a normal girl who isn’t made of glass. Maybe flat out ask her how she wants you to support her (researching, calling her, etc) and you can both learn what the boundaries are by keeping communication open, honest, and kind. I know I personally want my diagnosis to impact my family as little as possible. I want them to have happy lives not encumbered by cancer or me. And I think we have ironed out the ways i’d like them involved and what they do that makes me feel worse/isn’t helpful. I, in turn, have to be honest when I do need help (errands, making dinner, or full caretaking after treatment, or just talking about stuff). Everyone is different and their needs may change. I’m glad she hasn’t you there for her and even if you don’t feel like you are doing enough (this often happens with friends and family) I say trust that you are if you and her have talked about it. If that’s not enough maybe get involved in the bc community by participating in events, volunteering and whatever else you find

Hope this helps

Dx 9/4/2016, IDC, Right, 4cm, Stage IIIA, Grade 3, ER-/PR-, HER2- Chemotherapy 11/30/2016 Other Chemotherapy 2/22/2017 AC Surgery 5/18/2017 Lumpectomy: Right; Lymph node removal: Right, Sentinel Chemotherapy 6/15/2017 Carboplatin (Paraplatin), Taxol (paclitaxel) Radiation Therapy 10/5/2017 Whole-breast: Breast, Lymph nodes Dx 3/2018, IDC, Right, 5cm, Stage IV, metastasized to brain/bone/lungs/other, Grade 3, 1/1 nodes, ER-/PR-, HER2- Radiation Therapy 5/24/2018 External: Brain Chemotherapy 6/28/2018 Other Targeted Therapy 10/1/2018 Avastin (bevacizumab) Radiation Therapy 12/28/2018 Whole-breast: Breast Chemotherapy 12/30/2018 Halaven (eribulin) Dx 1/29/2019, IDC, <1cm, Stage IV, metastasized to other, Grade 3, 1/1 nodes, ER-/PR-, HER2- (FISH) Dx 2/5/2019, 3cm, Stage IV, metastasized to brain, Grade 3, ER-/PR-, HER2- (FISH) Surgery Chemotherapy Other

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