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Topic: Not Telling Family

Forum: Diagnosed and Waiting for Test Results —

Share with and support others all waiting for test results from CAT scan, PET scan, Oncotype tests, Mammaprint, FISH, IHC, and other diagnostic tests.

Posted on: Apr 3, 2020 09:01AM

Lexica wrote:

My Aunt was just diagnosed - the absolute worst timing, and I feel for anyone going through any kind of cancer treatment right now. She called me first because I'm the closest person to her that's been through this. I want to support her as best I can (we are not physically close, ~6 hours drive), but she closed our conversation this morning with 'please don't tell my boys.' She has two grown sons; the older one we are very close with. Some background - she puts her kids above herself in just about everything, and I think she doesn't want to worry or upset them. She has been supporting (some would call it enabling...) her younger son who is a recovering addict, so I understand her desire to not to send him off the wagon. But, she cannot go through this without help, right? I would never go against her wishes, but I also want to act in her best interest. I did tell her that she cannot keep it from them forever and she will need help. I hope that wasn't too harsh... Advice?

Diagnosed at 34. 2 years of Ibrance via PALLAS trial (ends 4/2020) Dx 7/2017, IDC, Left, Stage IIIC, Grade 2, ER+/PR+, HER2- (IHC) Surgery 12/15/2017 Lymph node removal: Sentinel; Mastectomy: Left; Prophylactic mastectomy: Right Dx 12/27/2017, DCIS/IDC, Left, 6cm+, Stage IIIA, Grade 3, 5/11 nodes, ER+/PR+, HER2- (IHC) Radiation Therapy 1/16/2018 Whole-breast: Breast, Lymph nodes, Chest wall Chemotherapy AC + T (Taxol) Hormonal Therapy Aromasin (exemestane)
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Apr 3, 2020 09:27AM Beesie wrote:

"But, she cannot go through this without help, right?"

Lots of people do not have the benefit of family support. It really depends on the diagnosis as to whether someone can do it alone. An early stage diagnosis with no chemo might be very manageable on her own.

What do you know about her diagnosis?

“No power so effectually robs the mind of all its powers of acting and reasoning as fear.” Edmund Burke
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Apr 3, 2020 09:32AM keepthefaith wrote:

Lexica, Telling your children can be very difficult on a good day...respect her wishes. She will tell them what she wants them to know when she is ready. She told you in confidence and you should respect that trust. Sometimes you just need the "right time" to tell those you love. For me, telling my adult children was probably the most difficult part of my DX. There was a sense of guilt that I felt responsible for causing them pain and worry. It's not reality, but it is part of the process. Give her time. The best thing you can do for her right now is listen to her and offer help and guidance if she asks. Best wishes~

Dx 9/17/2013, IDC, 1cm, Stage IA, Grade 2, 0/3 nodes, ER+/PR+, HER2- Surgery 10/18/2013 Lumpectomy: Right; Lymph node removal: Right, Sentinel Chemotherapy 12/3/2013 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Chemotherapy 12/26/2013 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Chemotherapy 1/16/2014 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Chemotherapy 2/11/2014 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Radiation Therapy 4/1/2014 Breast Hormonal Therapy 5/23/2014
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Apr 3, 2020 09:43AM Ingerp wrote:

This is her news to share with whoever she wants to (or doesn't) and she can absolutely decide her own timeline. I didn't particularly need any help through treatment (although live with my husband). My kids are grown and gone and I waited to tell them until I was visiting them. I also downplayed it--no reason to worry them unnecessarily. In fact, I was not going to tell my mom about the 2018 IDC but then realized I'd be seeing her when I didn't have any hair.

Dx 3/11/2016, DCIS, Left, 6cm+, Stage 0, Grade 3, ER-/PR- Surgery 3/22/2016 Lumpectomy Surgery 4/19/2016 Lumpectomy: Left Radiation Therapy 5/17/2016 Whole-breast: Breast Dx 3/2/2018, IDC, Right, 1cm, Stage IA, Grade 2, 0/1 nodes, ER+/PR+, HER2+ (FISH) Surgery 3/12/2018 Lumpectomy: Right; Lymph node removal: Sentinel Chemotherapy 5/17/2018 Taxol (paclitaxel) Targeted Therapy 5/17/2018 Herceptin (trastuzumab) Radiation Therapy 8/19/2018 Whole-breast: Breast
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Apr 3, 2020 10:09AM Lexica wrote:

Thanks everyone. I didn't have to go through the 'telling my kids' on a real level because they were so young when I was diagnosed. Not sure if that is a silver lining or not. I never had any intention of telling her kids - I wouldn't do that. But she has such a history of sacrificing (sometimes flat out ignoring) her own needs to focus on others. I just don't want that to harm her and impact her treatment. So far it looks like early stage, but she has had a persistent cough and blood clots the last couple years which makes me worry about metastasis. She has not has imaging except for a mammogram so far.

Diagnosed at 34. 2 years of Ibrance via PALLAS trial (ends 4/2020) Dx 7/2017, IDC, Left, Stage IIIC, Grade 2, ER+/PR+, HER2- (IHC) Surgery 12/15/2017 Lymph node removal: Sentinel; Mastectomy: Left; Prophylactic mastectomy: Right Dx 12/27/2017, DCIS/IDC, Left, 6cm+, Stage IIIA, Grade 3, 5/11 nodes, ER+/PR+, HER2- (IHC) Radiation Therapy 1/16/2018 Whole-breast: Breast, Lymph nodes, Chest wall Chemotherapy AC + T (Taxol) Hormonal Therapy Aromasin (exemestane)
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Apr 4, 2020 08:47AM Sunshine99 wrote:

Hi Lexica, I agree with the others - especially as she has just been diagnosed and probably does not have all the information like staging, receptor status. I've told some friends about my recurrence but will not tell my dad (a physician) or my sister until I have my HER2 status back and have had my bone biopsy. I want to have all the details and my treatment plan laid out before I tell them.

I'm glad your aunt can talk to you. It sounds like you're all she has right now. Thank you for being there for her.

All the best to both of you.

Cancer has progressed to my bones. I pray that it never enters my soul. Dx 11/2/2007, IDC, 3cm, Stage IIA, 0/3 nodes, ER+/PR+, HER2- Dx 3/26/2020, ILC/IDC, Stage IV, metastasized to bone, ER+/PR-, HER2- (FISH) Hormonal Therapy 4/22/2020 Arimidex (anastrozole) Radiation Therapy 5/5/2020 External: Bone Radiation Therapy 5/12/2020 External: Bone Targeted Therapy 6/10/2020 Ibrance (palbociclib)
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Apr 4, 2020 03:17PM Jelson wrote:

I didn't tell my young adult children til I had a firm diagnosis and a treatment plan, so I was able to answer many of their questions about what would happen next. Not telling her sons now is different than not telling them at all. Have patience and as others have said, she is fortunate to have you in whom to confide.

Dx 4/17/2009, DCIS, <1cm, Stage 0, Grade 3, 0/0 nodes, ER+/PR+
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Apr 4, 2020 06:38PM VeeHow wrote:

Lexica

I told everyone. I thought my biological family should know. Most don’t want to talk about it. I’m getting less calls. My husband’s family and my  church have been much more supportive but mostly when they first heard. I think they have trouble handling it, are poorly informed or don’t want to hear me complain. If it were me I would follow her wishes. It hurt that I didn’t get the support I expected, that they seem to distant themselves, never a card. There are so many places to find support even during this virus scare. 

Started with Mammogram, then Ultrasound, then MRI - ADH. Excisional Biopsy - DCIS, Lumpectomy - DCIS/IDC Dx 3/17/2020, DCIS/IDC, Left, Stage IA, Grade 2, 0/0 nodes, ER+/PR+, HER2- Surgery 3/23/2020 Lumpectomy: Left Radiation Therapy
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Apr 10, 2020 11:13AM claireinaz wrote:

Here is my story-it might shed some light on waiting to tell people and the right patients have to tell them when they are ready.

My mother insisted on being in the surgery waiting room when I had my excisional biopsy. We ( hubby and I )asked her not to come, but she insisted. Since she could drive, we really couldn't stop her. The stupid surgeon (he is a good surgeon, but made a poor choice) came out to the waiting room and told both my husband and mom that the lump was indeed b.c., and my mother called my sister, my brother, everyone she knew, probably. The surgeon told ME when I was essentially still half asleep from the anesthesia, without my husband there (another poor choice).

Anyway, since my brother knew, HE told his teen-age daughters, who called my own daughter and told HER right away. I wasn't even out of the hospital when all this happened. All without checking first with me. My daughter was traveling for her work, and she was alone at some airport when she got the news.

I wanted to wait until she came home, and I could tell her in person and reassure her, because I knew I could. Instead, I was robbed of that right, and my daughter was alone and freaked out and terrified. I was angry.

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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Apr 10, 2020 04:29PM Sunshine99 wrote:

Sheesh, Claire! It would have been nice for YOU to control WHO was told and WHEN they were told. I'm being very careful right now not to tell anyone who knows my dad or my sister that this beast is back and it's metastatic. When I know the extent of the spread and have a treatment plan in place, THEN I will tell them. Until then, I think it would just be a huge worry to them. They both live about an 8-hour drive away. They can't come down here anyway with the "shelter at home" status. My neighbors know and some of my church family, but until I get the tx plan in place, I'm keeping it quiet from everyone else.

Cancer has progressed to my bones. I pray that it never enters my soul. Dx 11/2/2007, IDC, 3cm, Stage IIA, 0/3 nodes, ER+/PR+, HER2- Dx 3/26/2020, ILC/IDC, Stage IV, metastasized to bone, ER+/PR-, HER2- (FISH) Hormonal Therapy 4/22/2020 Arimidex (anastrozole) Radiation Therapy 5/5/2020 External: Bone Radiation Therapy 5/12/2020 External: Bone Targeted Therapy 6/10/2020 Ibrance (palbociclib)
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Apr 10, 2020 05:30PM - edited Apr 10, 2020 05:31PM by ShetlandPony

The thing is, most people you tell, in confidence, will agree to keep your confidence but actually think it's ok if they tell just one or two people, as long as they swear them to secrecy. Then those two people each go tell two more and swear them to secrecy. And so on. That is why I told only three people who needed to know and I made it very clear that it was not ok to tell anyone else. This was to protect my kid so I could tell what and when I chose. I missed out on some support that way but my kid was my priority. I allowed my DH to tell someone he wanted to get support from. Sure enough, that person told someone else even though DH had said not to.

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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Apr 11, 2020 04:04AM AliceBastable wrote:

claireinaz

I had a situation with my sister when I had surgery for kidney cancer. I got a phone call from a cousin I don't particularly like, because my sister had called him and told him I was dying! Managing her drama was harder than losing a kidney.

Heh heh. I just noticed that when I type "sister" one of the crazy-face emojis shows up as a suggestion.


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 7/11/2018 Lumpectomy: Left; Lymph node removal: Sentinel Surgery 8/8/2018 Radiation Therapy 10/29/2018 Whole-breast: Breast, Lymph nodes
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Apr 11, 2020 07:58AM Sunshine99 wrote:

Alice, that's funny about the crazy-face emoji! Thanks for the laugh. I'm sorry you had to deal with the drama of your sister. I still have to tell my sister... She's going to be really upset, but she's not whack-a-doodle, fortunately. There is one lady at our church who will probably go into hysterics when she finds out. When she heard that another woman in our church had breast cancer, she burst into tears and started saying, "Oh this is terrible! How can this be happening? This isn't fair!" I told her "Joann, you need to be strong for her. Hysterics aren't going to help her." The other woman has been NED for about 5-6 years now.

I spoke with my dad, the physician, last night. He just had a Mohs surgery on his ear to remove a cancer. He was very impressed with the procedure. He signed in, then waited in his car until they came and got him. They did the procedure, then had him wait in his car while they checked the results. They came back out and said they didn't get clean margins, so they brought him back in an took a little more. Got clean margins that time, so they sent him home. Sounds like all is good.

It's really hard not telling him anything at all at this point, but after Wednesday, the 22nd, I should know enough to give him the full diagnosis and the treatment plan.

Strength and blessings to all my sisters out there - even the bat-sh*t crazy ones! Actually, maybe being bat-sh*t crazy isn't so bad. I had neighbor text me yesterday saying she had gone to the local grocery store, and there were 3 people not wearing masks. I told her that all we have to do is go to the store and act really weird (AKA bat-sh*t crazy) and people will avoid us! "STAY AWAY FROM THAT CRAZY LADY IN THE TOOTHPASTE AISLE!"


Cancer has progressed to my bones. I pray that it never enters my soul. Dx 11/2/2007, IDC, 3cm, Stage IIA, 0/3 nodes, ER+/PR+, HER2- Dx 3/26/2020, ILC/IDC, Stage IV, metastasized to bone, ER+/PR-, HER2- (FISH) Hormonal Therapy 4/22/2020 Arimidex (anastrozole) Radiation Therapy 5/5/2020 External: Bone Radiation Therapy 5/12/2020 External: Bone Targeted Therapy 6/10/2020 Ibrance (palbociclib)

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