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Topic: Waiting 2 tell family & my 2nd disease; one wasn't enuf, sigh

Forum: Just Diagnosed — Discuss next steps, options, and resources.

Posted on: Jul 23, 2019 12:00PM

wildchid wrote:

Hi all - Grateful to have found this site:)

I was diagnosed with IDC last Friday -- July 19, one day after my 52nd birthday -- (we had a feeling so waited a day - just wanted my birthday free from.. anything).

Seeing surgeon today, in a couple hours --

I have some details -- hormone positive, but HER2- negative. I do wonder about BRCA - I am 12% Ashkenazi.. grandmother died of Ovarian.

I have been nauseated for 3 days waiting, wondering, educating myself, preparing... screaming, laughing, and feeling like my head will explode from wanting to escape all this. My rational mind does win most of the time - and yet there does not seem to be a safe place in any of this. So finding coping skills is big on my list.

Have not told family yet. I also have Multiple Sclerosis - more lesions were found in my brain the day before my breast biopsy. I am now Secondary Progressive advanced from (Relapsed Remitting). SO this is a bit of a double whammy -- Sheesh, I live in Palm Beach County, but this is not the type of high maintenance woman I was planning on being!

All I want right now is to know what path we (husband and I are in it together) are headed down then I can bring others in and tell them... does that make sense?

How does everyone break this kind of news -- I mean, I can handle a lot - yet telling is almost as terrifying as waiting on this next appointment.

I wish all well ---

hope my post was in the spirit of the forum:)))

peace

Debra

no matter what, rock your own world
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Jul 23, 2019 12:27PM kber wrote:

Hi Debra - so sorry you are in this situation. I found telling people was the hardest part and, frankly, after I told my kids and my parents, I delegated sharing the news to others. I didn't handle telling my son all that well and my husband had to clean it up for me. I wish I could have that moment back, but we are all human, right?

I did find a site, CaringBridge.org, that I eventually used to share updates with family and friends. It was easier to tell everyone at once rather than field a hundred text messages or emails. But I didn't set that up until the news was basically out. My thought was once my immediate family knew, they could take out an ad in the NYT or hire a sky writer, for all I cared. I had the same attitude at work. Once my boss knew and I had worked out my plan, it was easier to let the rumor mill do its work.

Dx 11/2018, IDC, Left, 5cm, Stage IIB, ER-/PR-, HER2- Chemotherapy 12/6/2018 Adriamycin (doxorubicin), Carboplatin (Paraplatin), Cytoxan (cyclophosphamide), Taxol (paclitaxel) Surgery 5/27/2019 Mastectomy: Left; Prophylactic mastectomy: Right Radiation Therapy 7/16/2019 Whole-breast: Breast, Lymph nodes, Chest wall
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Jul 23, 2019 12:27PM Moderators wrote:

wildchid, we are sorry you find yourself here, but glad you found us. Sounds like you've been through a lot. The waiting is indeed really torturous. Many people wait to have a treatment plan and more details before they tell family and friends. It's very individual, of course. Are you going to ask about genetic testing? It sounds as though it could be helpful.

Please keep us posted on what the doctors tell you, and anything else you wish to share.

Medicating The Mods

To send a Private Message to the Mods: community.breastcancer.org/mem...
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Jul 23, 2019 12:52PM edj3 wrote:

Hi Debra,

I'm with kber, telling my family (especially my children) was emotionally depleting. I ended up doing it in chunks: husband first, then my sister the same day (because I knew she wouldn't need emotional support from me). I told my two sons the day after that (and left it to them to tell my wonderful daughters-in-law, not because I don't love them but because I had no emotional energy left). I shared w/ my mother the day after THAT.

Co-workers--kept it pretty much under the radar except my direct reports and my manager.

But it flat wore me out when I didn't have energy to spare.

Sending you peace while you get the information in dribs and drabs (which is another kind of exhausting).

Dx 4/9/2019, DCIS/IDC, Left, <1cm, Stage IA, Grade 2, 0/1 nodes, ER+/PR+, HER2- (IHC) Surgery 5/5/2019 Lumpectomy; Lymph node removal: Sentinel Dx 5/6/2019, LCIS, Left, <1cm, 0/1 nodes Radiation Therapy 5/31/2019 Whole-breast: Breast
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Jul 24, 2019 05:59AM arizonaboundgal wrote:

As the sister of someone who has secondary progressive MS and was diagnosed with BC 10 years ago, my reaction was (of course) one of sadness and maybe some anger. Probably the same reaction I would have had whether she had MS or not. Did I worry? Of course. But I also knew that if she dealt with the BC the way she dealt with the MS, she'd be just fine. She's a strong and stubborn woman with a lot going for her. I'm sure that your family sees you the same way.

As others have said, DO take as much time as you need to share the news and do it in bits and pieces based on how you feel. I remember my sister telling me that she'd learned of her diagnosis 2 weeks prior, but needed time for her and her hubby to digest things. I'm over a week out from being diagnosed and I still haven't shared the news with a couple of family members, because it's too emotionally draining. Like edj3, I've been telling a person a day and then taking a few days off.

And just so you know, my sister is doing fabulously 30 years after her MS diagnosis and 10 years after her BC. She has her limitations, of course, but still works full time, travels like crazy, sees a ton of concerts, and always seems to be doing something to stay busy. Honestly, she does more than I do!

Enjoy every sandwich--Warren Zevon
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Jul 24, 2019 08:52AM claireinaz wrote:

I told my immediate family and my daughter first. I shared dx after that with my boss and a few trusted colleagues that I was also friends with (they knew I suspected I had it, and knew I was having tests done).

I knew I would be exhausted answering emails, facebook posts, phone calls, etc if I told everyone, so I kept my circle very small. I found that I had needy friends and family who were so panicked that I would die (as I was already) they kept wanting me to reassure them I'd be okay. Since I could barely keep it together myself, I had those members call my husband for updates.

You have to conserve your energy and not let it leak out unnecessarily, so keeping circle very small was best for me, at least during the first couple of months.

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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Jul 24, 2019 08:54AM - edited Jul 24, 2019 08:55AM by claireinaz

PS Kber mentioned Caringbridge and I did post updates later in my tx in a journal on Caringbridge for those that were interested. I still had 2 friends who wouldn't visit that site, and they actually got upset with me that I wouldn't update them personally and regularly. They were the needy ones mentioned in the above post.

Hang in there. We've got good tx ops and I am hopeful yours will be beaten back and you'll be fine.

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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Jul 26, 2019 08:10AM - edited Jul 26, 2019 08:16AM by wildchid

Kber Thank you so much for this advice. I appreciate your writing about your friends that wanted personal updates. I have been through this with MS already, it is so insanely draining. I cant imagine now w/Cancer...sigh. I am not up for play by play, are any of us? I told my husband about Caringbridge -- I think we may work on it together so he can refer people as well.

Stress exacerbates my MS symptoms making it impossible for me to think clearly, speak and walk... I need to conserve as much as humanly possible --- so thank you so for your words:))

I hope for you, you are charting a course through ... love your powerful Camus quote!

no matter what, rock your own world
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Jul 26, 2019 08:19AM LoveFromPhilly wrote:

hi wildchild,

Ughhhh this is def one of the more difficult parts. I hate telling people about breast cancer, I feel like they immediately check out my boobs and with a quick side-eye. Telling my family and loved ones was the hardest because I was already traumatized and then I had to sit through their processing too.

What I ended up doing was I had my mother and my best friend be my voice for me until I felt strong enough emotionally to handle it myself (which I still struggle with).

I also sent out a group email (bcc’ing everyone) where I explained what was happening and told folks to please not respond to me directly but instead to either my bff or my mom. I specifically told people I needed quiet time to collect myself for a while and when I was ready, I would be available to talk about it, if anyone felt like they wanted/needed to.

Sort of the same as the website you mentioned. I thought of using that site but didn’t feel up for the upkeep of it enough, both emotionally and energetically.

Form your forcefield of love and protection around you in whatever context that is and let yourself be taken care of by a couple few good loved ones. Let them figure out how to help you, and don’t worry about doing the work for them. Right now, the need is to focus on yourself and get through each day. Sending lots of love and a gentle hug to you ♥️

💫 🧚🏾‍♀️ 💫 🧚🏾‍♀️ 💫 🧚🏽‍♂️ 💫 🧚🏽‍♂️ 💫 🧚🏾‍♀️ 💫 🧚🏾‍♀️ 💫 🧚🏾‍♀️ 💫 🧚🏾‍♀️ Dx 3/25/2017, IDC, Right, Stage IV, metastasized to bone, Grade 3, ER+/PR+, HER2- (IHC) Hormonal Therapy 4/4/2017 Femara (letrozole) Targeted Therapy Ibrance (palbociclib)
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Jul 26, 2019 08:20AM wildchid wrote:

Thank you very much for this note --- I am learning more and more how we must go step by step and not get too ahead of ourselves. It would have been impossible for me to understand what this feels like, now that I am 'feeling it'... thank G-d for forums like this -- a place to be who we need to be... ourselves:)

no matter what, rock your own world
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Jul 26, 2019 08:32AM wildchid wrote:

edj3 -- I like that you told them in chunks... because even thinking of communicating with everyone when I haven't quite figured out how to communicate with myself, or my husband completely yet (we are learning).... it is just so much. I am starting to learn how too, some people reel back like it is contagious. It is going to take some getting used to so thanks for the note! I appreciate ho wyou knew who would need emotional support from you - and who you could wait a bit because of energy depletion. It really is a matter of taking care of self first, I know I am not completely programmed that way -- but this is not a dress rehearsal -

Dribs and drabs, right? Its like waiting for random messages in a bottle to float in, all with bad news.... sigh -- but the good news is, I am feisty... lol In for the ride and determined to keep some snarky humor in there...

again - thank you so much and I wish you well:)))


no matter what, rock your own world
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Jul 26, 2019 08:41AM wildchid wrote:

Another MS Warrior, thanks for sharing her story! And your waiting 2 weeks to tell... ok good, then I am not crazy or evil for waiting. I feel I am going to get a whole lot of "why didnt you tell me's"... but I cannot think about that now - this is just too huge to handle all at once...

Its funny, I have been battling with MS, now Secondary Progressive as well, for a few years now and I have lost a lot because of it. But also, I have found a great deal as well, I write about coping with MS monthly on a site and I have explored different facets of life I'd never had the chance to before.

Now with cancer - I wonder where the journey will take me.. well, after I cry through all the 'why me's" and the two major disease sticker shock. It is a whole new permission slip to embrace life -- well, and to go through a bit of hell i am learning. SO encouraging to get these kinds of replies and support -- thank you so very much.

I wish you well and will see you out here:)

no matter what, rock your own world
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Jul 26, 2019 08:47AM wildchid wrote:

Thank you claireinaz --- I think you and I have similar families. With MS, for the past several years, I am begged for updates, descriptions of every single symptom, asked about when next Dr visit is etc.. But now, with this -- I just do not have the ability to put it all into words.

My husband likes your idea of having some needy family members (bless them), call him. In fact he is shielding me now, and letting some people know in my stead. I have such a responsibility complex, I feel like I am letting so many down. But then my husband looked at me last night and said,,, Debra, you have Cancer. You have every right to do nothing but take care of yourself right now. He is right, I do.

I am encouraged to learn that so many go through this at the beginning ... makes the road ahead seem less lonely...

thanks so much

no matter what, rock your own world
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Jul 26, 2019 08:55AM wildchid wrote:

LoveFromPhilly, Love the 'form a forcefield around self'! I am going to visualize this! Also, the bss idea is brilliant! Personal, yet sent to many....

I am put at ease with so many stating they just do not have the energy - and that, that is ok. It does not make us bad people, we are doing what we have to do, no matter what.

I appreciate too, how you give yourself windows, when you are up for talking to others. I suppose I need to rerack my thinking and consider myself more, less how others are going to feel because of my 'behavior'.

I do love the quote I heard years ago by Don Johnson, post Miami Vice, when ppl saw him as washed up... he said.. "what other people think of my, is none of my business"... I do try to live by this, but family dynamic is classic at creating second guesses.

thanks for the advice -- and I hope you are powering through and embracing the good:)

no matter what, rock your own world
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Jul 27, 2019 01:03AM Irishlove wrote:

Hi wildchid. As both a BC survivor and MS of 17 years I can sympathize with the need to limit or at least control information. The stress pushed MS in to high gear, after BC diagnosis. Still dealing with the MS symptoms and mastectomy healing. Someone posted years ago on the Mass. Gen Hospital "Brainforum" about having cancer and MS. I recall some of her words and she felt that the cancer was such a difficult journey, but after the journey was completed, she felt cured. MS on the other hand is the disease that keeps on taking. I wasn't sure I agreed one was better or easier to deal with than the other and I'm still not sure. But I had a major MS flare. Now I remember. We may be secondary progressive, but boy those attacks still hit like a baseball bat to the head. So caution as you will be unable to take steroids (I do solumedrol for distinct attacks) for awhile before, during or after surgery. I love that you have the greatest support from your husband. I, too am blessed with a hero of that caliber.

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Jul 27, 2019 04:50PM DiagnosisDisruption wrote:

I told my husband the day I found out, then waited until the day my daughter flew home from college overseas (having to tell is the only thing about all this that still brings me to tears).

I waited well over a month to tell my family and my husband's family. I wanted all my ducks in a row as far as chemo, schedule, surgery options, etc. We told our parents and then let the news flow (although I did tell my brother before my mom with, "I have cancer and I'm going to be telling mom, so I need your help.")

This was all followed promptly by "here's our CaringBridge site". Do not call, do not visit, here's a list of the things we need. Yes, asshole move, but this was about me, and I didn't want to have to take care of other people badgering me on my time. Selfish, yup. Regret, nope. I countered this with a completely updated CaringBridge postings. Every scan, chemo, oncology visit, radiation treatment. Everything in writing so no one could barrage my husband or me with questions. I didn't want to be falling asleep after 7 hours of chemo only to hear the phone ring and my husband say, again and again, "yes, she did okay. Little nauseous" and the like. I wrote that thing on the way home from chemo. I had to do my part of they were to do their part.

Then again, that is my personality. Love the Don Johnson quote. Ironically, just yesterday my husband read that off to me. I'm thinking it needs to be made into a T-shirt.

Dx 12/8/2017, IDC, Left, 2cm, Stage IIA, Grade 2, 0/2 nodes, ER+/PR+, HER2+ Targeted Therapy 1/23/2018 Herceptin (trastuzumab) Targeted Therapy 1/23/2018 Perjeta (pertuzumab) Chemotherapy 1/23/2018 Carboplatin (Paraplatin), Taxotere (docetaxel) Surgery 5/23/2018 Lumpectomy: Left Surgery 6/12/2018 Lumpectomy: Left Radiation Therapy 7/18/2018 Whole-breast: Breast Hormonal Therapy 10/10/2018 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Jul 27, 2019 05:16PM edj3 wrote:

DiagnosisDisruption I think your method was very emotionally healthy and not at all a jerk or asshole move or selfish. In fact, I'd argue that (to use a current buzzword) you demonstrated a lot of self-care.

Of course I may think that because it's very nearly what I did, only sub in my personal blog for a Caring Bridge one.

Dx 4/9/2019, DCIS/IDC, Left, <1cm, Stage IA, Grade 2, 0/1 nodes, ER+/PR+, HER2- (IHC) Surgery 5/5/2019 Lumpectomy; Lymph node removal: Sentinel Dx 5/6/2019, LCIS, Left, <1cm, 0/1 nodes Radiation Therapy 5/31/2019 Whole-breast: Breast
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Aug 5, 2019 10:48AM wildchid wrote:

Irishlove, Oh another MS Warrior -- thank you so much for your words. I am feeling extremely symptomatic from the underlying stress and fear. I am secondary but absolutely do get flare-ups. I dread radiation for this reason - and of course, the dread makes my MS worse right then and there.

It is hard to look at this and say - hey a new chance to look at life and appreciate and embrace what matters most once you fight through - because, I've just done that losing my job, mobility, etc from one disease already. So now this too. I swear ridiculous humor is a powerful friend. I told my husband he cant be cross or annoyed no matter how annoying or ridiculous I am because from now on, I'll just look at him, point at myself and say.... "ummm, cancer". Poor guy, he will never win another argument or decide which movie to see... I now have that kind of power. Hah! I do not have a big family and very few friends and i never had children.... Times like this are crazily isolating -- but I am blessed with a solid loving marriage:)

Thanks for bringing up there are others with cancer and MS, I searched all over and could not find anyone - until this forum.

Sorry for the ramble -- its brain fog -- I know you get that! :))

peace and all that is good

wildchild



no matter what, rock your own world
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Aug 5, 2019 10:57AM wildchid wrote:

DiagnosisDisruption - here's to one of the best names ever... lol Thanks for your support in the self-love issue. I know I am going to get a ton of 'why didnt you tell me's?' on the other side - but I've just got to preserve my sanity now. Since I have MS, and family is already on a razors edge with every little symptom... there is just no more room any more stress and drama other than my own. I feel as if I have got to come to terms with this in my own way and this is NOT a dress rehearsal... this stuff is real.

Incidentally. My husband informed my dad-- and he appreciated we told him alone. He agreed best not to tell mom (they've been married 53yrs) until after surgery. So I am somewhat relieved that 'someone knows' and its not all on me. An incredible burden lifted.

No rule book I am learning - it really is go with how you feel and what you feel you need. Who knew being selfish is so hard to learn and fell ok about? lol

peace and health

wildchild

no matter what, rock your own world

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