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Topic: I don't want to attend any BC related events, anything wrong?

Forum: Coping with Holidays, Special Days and Anniversaries — Holidays and special days, like birthdays and anniversaries, can be filled with complex emotions. Are they a time to celebrate or are they extra difficult? Share your feelings and experiences here.

Posted on: Sep 28, 2018 06:59PM - edited Sep 28, 2018 07:01PM by stephilosphy00

stephilosphy00 wrote:

I was diagnosed two years ago at very young and I don't want to be defined as "breast cancer survivor" for the rest of my life! So I have been reluctant to attend any breast cancer events. I don't care if they can raise money or not for BC. Anything wrong about it? I have been paying a lot for my copay anyway. My mom thinks I will become depressed if I still don't open myself up about my diagnosis. 🙄

Dx at 29. Original mass 2.5 cm. Biopsy MRI and PET/CT confirmed 1 node involved. Ki-67 score 7.5%. ER100% PR100%. Genetic testing negative. Restaged to stage IIA post surgery. Chose to do 6 cycles of Xeloda to prevent recurrence!! Dx 11/9/2016, DCIS/IDC, Left, 2cm, Stage IIB, Grade 3, 1/3 nodes, ER+/PR+, HER2- Chemotherapy 11/18/2016 AC + T (Taxol) Surgery 5/10/2017 Lymph node removal: Sentinel; Mastectomy: Left Hormonal Therapy 5/21/2017 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Hormonal Therapy 7/11/2017 Aromasin (exemestane) Radiation Therapy 7/12/2017 Whole-breast: Breast, Lymph nodes, Chest wall Surgery 4/3/2018 Prophylactic mastectomy: Right; Reconstruction (left): DIEP flap; Reconstruction (right): DIEP flap Hormonal Therapy Zoladex (goserelin)
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Sep 28, 2018 07:10PM LovefromPhilly wrote:

girlfriend I totally hear ya! I went to one MBC conference and I was drained for a week. Perhaps your inner knowing of how to best care for yourself is really shining through and speaking loudly and clearly.

There’s no have to’s with BC. If you end up deciding you want to connect with other BC’ers one day, then I’m sure you will.

Thank Mom for her concern and let her know that if it feels important to her then perhaps she could the events for you and for herself and report back.

Actually, my parents did just that! They went to several events to become more educated about MBC and they found it very informative and helpful. I was happy to not go

With Love From Philly Dx 3/25/2017, IDC, Right, 6cm+, Stage IV, metastasized to bone, Grade 3, ER+/PR+, HER2- (IHC) Hormonal Therapy 4/5/2017 Femara (letrozole) Targeted Therapy Ibrance (palbociclib)
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Sep 28, 2018 07:38PM - edited Sep 29, 2018 06:43PM by Egads007

Almost every stage of our experience is dealt with in our own very personal way. I don't see any right or wrong way in the many reactions or coping methods any of us choose. I felt, and still feel, very much like you do. I told very few people about my cancer because I was afraid it would define me to others and myself as 'the one that had breast cancer'. To a great degree those that I did let in on my situation still treat me with kid gloves 5 years later. I hate it. I understand where they are coming from, appreciate their concern, but I wish I could erase it from their memories and go back to who I was to them before they knew. I have done that for myself, but 'it' is still there for them no matter how much more physically and emotionally stronger I am today. They still refer to me as a survivor, like a permanent mark on my record. Delving into fundraising would probably bring it back to the frontlines of my mind too, and possibly ruin all the work I've done to put it behind me and live a full happy life. Like you I choose not to immerse myself in events, not because of laziness or callousness to the cause, but simply as a life coping method. Some folks gain strength by the amazing work they do for the cause, and I'm proud and grateful for them....happy they’re finding a way to peace of mind. In the end it's all good. Whatever it takes, there is no right or wrong IMHO.

"I base all my fashion choices on what doesn't itch" (Gilda Radner) Chemotherapy 3/20/2013 Doxil (doxorubicin), Taxol (paclitaxel) Surgery 8/23/2013 Lumpectomy: Right; Lymph node removal: Right Radiation Therapy 11/1/2013 Whole-breast: Breast, Lymph nodes Dx IDC, 4cm, Stage IIB, 0/2 nodes, ER+/PR- Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Sep 29, 2018 12:09AM AliceBastable wrote:

I wish people would just donate money to a legit research facility, or to an organization that provides services (transportation, screening, treatment, etc.) for those who can't afford it, without it having to be an "event." And I really hope anyone who participates in these things doesn't try to lay the unwanted and unwelcome burden of gratitude on anyone who has or had cancer.

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 10/29/2018 Whole-breast: Breast, Lymph nodes
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Sep 29, 2018 02:00AM Traveltext wrote:

Yes, plenty of good research institutes to donate money to without going to the bother and distress of attending a pink event. Those pink charities take at least half of thebfunds raised as administration costs. And you could look for a group that offers practical support to people as AliceB suggests.


NED breast and prostate cancer. More on Male BC

Dx 03/14, IBC, Lgth. 2cm, Stge IIIB, Gde 2B, ER+/PR+, HER2- ; FEC x3, Taxol x3; Mx & 2/23 nodes; Rads x 33; now on tamoxofin.

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Sep 29, 2018 03:45AM gb2115 wrote:

Honestly, do whatever you want. Just because you had breast cancer doesn't mean you have to go to events!! It's totally ok.

Dx IDC in October 2016, stage 2A, 1.2 cm ER/PR+ Her2-, Grade 2, 1/3 nodes. Mammaprint low risk luminal A, Lumpectomy + radiation + tamoxifen. Age 38 at diagnosis.
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Sep 29, 2018 06:04AM Meow13 wrote:

I agree with AliceBastable. I wish the "events" weren't shoved in our face. I know where I used to work it really wasn't possible to avoid them.

Pink charities don't care what BC survivors think or feel they are fundraisers making a profit. Yes some of the money goes to research. I am happy when the pink is over.

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Sep 29, 2018 06:30AM stephilosphy00 wrote:

I will go if they give me financial support for my medical bills!

Dx at 29. Original mass 2.5 cm. Biopsy MRI and PET/CT confirmed 1 node involved. Ki-67 score 7.5%. ER100% PR100%. Genetic testing negative. Restaged to stage IIA post surgery. Chose to do 6 cycles of Xeloda to prevent recurrence!! Dx 11/9/2016, DCIS/IDC, Left, 2cm, Stage IIB, Grade 3, 1/3 nodes, ER+/PR+, HER2- Chemotherapy 11/18/2016 AC + T (Taxol) Surgery 5/10/2017 Lymph node removal: Sentinel; Mastectomy: Left Hormonal Therapy 5/21/2017 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Hormonal Therapy 7/11/2017 Aromasin (exemestane) Radiation Therapy 7/12/2017 Whole-breast: Breast, Lymph nodes, Chest wall Surgery 4/3/2018 Prophylactic mastectomy: Right; Reconstruction (left): DIEP flap; Reconstruction (right): DIEP flap Hormonal Therapy Zoladex (goserelin)
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Sep 29, 2018 08:03AM Spookiesmom wrote:

Nothing wrong with your feelings at all. Mom can go, you don’t have to. I hate the whole pink washing of October and won’t wear anything pink during the month.

My DD did the last 3 day Komen walk in Tampa when I was in treatment. Now Komen has stopped them completely. I’m glad, for a lot of reasons. I won’t go off on Komen now.

Just keep on being you, it’s ok.

Dx IDC, Stage IIIA, Grade 3
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Sep 29, 2018 12:48PM ceanna wrote:

Nothing wrong with not wanting to be labeled, giving our time and money to other causes, and not telling others of our situations. Having BC is private unless I choose to let others know. I'm not a fan of Pinktober nor of the word "survivor." We all cope with having BC in different ways and each way is okay. I think there is enough "awareness" and work needs to focus on a cure and help for those in financial need for treatment. Don't feel guilty stephilosophy for getting on with life!!!

Dx 2014, IDC, 0/4 nodes, ER+/PR+, HER2- Radiation Therapy Multi-catheter Surgery Lumpectomy: Right
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Sep 29, 2018 01:00PM Meow13 wrote:

True, for people without good health insurance the costs are high. MRIs are considered routine for discovering the extent of the disease and easily cost over $2000, not to mention surgery, hospital stay, radiation, reconstruction....

I know we aren't suppose to be political but I think we need the affordable care act, with truely affordable costs.

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Sep 29, 2018 01:49PM Runrcrb wrote:

Stephilosphy00 - don't feel guilty and don't feel compelled to attend or make excuses. Simply say no. I'm a lot older than you and I don't want to spend my remaining years labelled as a breast cancer survivor. Unlike the flu or strep, the treatment cycle is long for BC (23 months from first surgery to last for me) so the illness stays in my mind but I look forward to the day when I can't remember the details.

Dx 6/27/2016, IDC, Right, 1cm, Stage IIB, Grade 1, 4/10 nodes, ER+/PR+, HER2- Dx 6/27/2016, ILC/IDC, Right, 2cm, Stage IIB, Grade 1, 4/10 nodes, ER+/PR+, HER2- Surgery 9/21/2016 Lymph node removal: Right; Mastectomy: Right; Reconstruction (right): Tissue expander placement Chemotherapy 10/31/2016 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Radiation Therapy 2/8/2017 Whole-breast: Breast, Lymph nodes, Chest wall Hormonal Therapy 4/23/2017 Arimidex (anastrozole), Aromasin (exemestane) Surgery 12/12/2017 Reconstruction (right): DIEP flap
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Sep 29, 2018 02:31PM NotVeryBrave wrote:

I say do what feels right to you! Some people gain strength and purpose by digging into many BC events. Others just wish they could forget all about BC and it's effect on their life.

My teenage daughter participated in a walk for BC with some friends while I was still undergoing treatment. I think it felt important to her and I didn't mind paying the registration fee. But I just couldn't go.

I'm sure there are lots of good organizations, but sometimes it seems like more focus is put on raising the next dollar than on what the dollars are paying for.


TCHP x 6 with pCR. One year of Herceptin. DTI pre-pec surgery. Quit Tamoxifen after 3 months. Dx 11/21/2016, DCIS/IDC, Left, 2cm, Stage IIA, Grade 2, 0/3 nodes, ER+/PR+, HER2+ (IHC) Targeted Therapy 12/18/2016 Perjeta (pertuzumab) Targeted Therapy 12/19/2016 Herceptin (trastuzumab) Chemotherapy 12/19/2016 Carboplatin (Paraplatin), Taxotere (docetaxel) Surgery 5/9/2017 Lymph node removal: Sentinel; Mastectomy: Left; Prophylactic mastectomy: Right; Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant Hormonal Therapy 9/9/2017 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Sep 29, 2018 03:39PM AliceBastable wrote:

"I gave at the office - the doctor's office." 😏

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 10/29/2018 Whole-breast: Breast, Lymph nodes
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Sep 29, 2018 04:11PM Sadlynew2018 wrote:

Egads, your post is so incredibly refreshing. I’m less than 2 months out from my diagnosis and only my husband and mom know. And frankly, between them and the incredible women on this site, I feel like I have all I need for me. I agree it’s a personal choice. I do feel like “going public” will label me. And when I was ready to move on, they couldn’t or wouldn’t. I do agree the extra support would be nice now but the “pity looks” outweigh any benefit (to me). Every person is so different and I do believe I’m in a minority on this. But I guess it’s my coping mechanism. I’m so glad I care across your post because it makes me believe I’m not alone with the way I feel. Thank you for sharing. You helped someone incredibly today (me). :-)
Dx 8/9/2018, IDC, Right, 1cm, Stage IA, Grade 2, ER+/PR+, HER2- (FISH) Surgery 8/27/2018 Lymph node removal: Sentinel; Mastectomy: Right; Prophylactic mastectomy: Left; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Dx 9/5/2018, IDC, Right, 3cm, Grade 3, 1/15 nodes, ER+/PR+, HER2- (FISH) Surgery 9/9/2018 Lymph node removal: Underarm/Axillary
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Sep 29, 2018 05:29PM PhoenixCruiser wrote:

Steph and SadlyNew I agree 100% and to be honest just not looking forward to October and all the pink we will be seeing.

Alice, I love your quote and will be using it!

Dx 8/2017, Right, Grade 3, 0/4 nodes, ER+/PR+, HER2+ Targeted Therapy Herceptin (trastuzumab) Chemotherapy Taxol (paclitaxel) Radiation Therapy Surgery Lumpectomy: Right
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Sep 29, 2018 06:05PM - edited Sep 29, 2018 06:08PM by mustlovepoodles

Alice and Meow, you are right on the money. I truly hate the whole PinkTober campaign. I don't want to walk or run, I don't want to buy or wear pink stuff. I don't want to be the face of breast cancer.

Rather than give my money to PinkTober organizations that may or may not spend it the way I intend I made a donation to the Hope Lodge in New Orleans. They offer their assistance to anyone undergoing treatment for cancer, any kind of cancer. We have stayed there twice while I underwent surgeries. They were so good to us. We were able to stay in a lovely hotel room with a large bathroom. We had a large kitchen available to us, a library, and a TV in the dining area. Volunteers ran us to and from the doctors and hospital. Other volunteers brought delicious meals.

Hope Lodge made a very difficult situation more bearable and for no charge. I will be happy to support them in the future.


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 9/2/2015 Lumpectomy: Right Chemotherapy 10/19/2015 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Surgery 2/4/2016 Prophylactic mastectomy: Left, Right Surgery 10/18/2016 Hormonal Therapy Femara (letrozole) Surgery
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Sep 29, 2018 06:34PM AliceBastable wrote:

Mustlovepoodes, Hope Lodge sounds wonderful. That's the kind of place to donate to - and I'll try to find something like that when I'm not giving all my money to co-pays, which will start up again when I'm cleared for radiation and then whatever anti-hormonal I'm going to get. And if insurance covers Prolia shots. This crap is a real money slurper, even with sort-of decent insurance.

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 10/29/2018 Whole-breast: Breast, Lymph nodes
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Sep 29, 2018 06:40PM Egads007 wrote:

Sadlynew - Thank you for your very kind and generous words. It’s not often that I get serious around here, but this thread struck a note with me....and it was a relief to get it off my chest. I’m so pleased to have helped lighten your load. Having found your ‘like mind’ has helped me in return. Thank you for posting, youmade my day!

Alice - *high 5* your quote is 15 shades of funny :)))

"I base all my fashion choices on what doesn't itch" (Gilda Radner) Chemotherapy 3/20/2013 Doxil (doxorubicin), Taxol (paclitaxel) Surgery 8/23/2013 Lumpectomy: Right; Lymph node removal: Right Radiation Therapy 11/1/2013 Whole-breast: Breast, Lymph nodes Dx IDC, 4cm, Stage IIB, 0/2 nodes, ER+/PR- Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Sep 29, 2018 06:58PM Spookiesmom wrote:

Must love poodles, excellent idea!

And I do love poodles.

Dx IDC, Stage IIIA, Grade 3
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Sep 29, 2018 08:08PM 7of9 wrote:

I still don't 6 yrs out although after 5 yrs, I got courageous enough to talk to on the phone and mentor some newer patients. I threw every pink think away I was ever given. I did buy myself a shirt last spring, I've only worn it a few times. All the treatments, scars, drugs, add one of us just can't handle any more. I'm grateful for those who do. I really feel their voices got me to do my self exam that caught my original diagnosis.

If you're going through hell, keep on going. You might get out before the devil even knows you're there. Dx 1/18/2012, IDC, Left, 2cm, Stage IIB, Grade 2, 0/2 nodes, ER+/PR+, HER2- Surgery 6/1/2012 Lymph node removal: Left; Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Surgery 11/1/2012 Reconstruction (left); Reconstruction (right) Dx 12/23/2015, IDC, Left, 2cm, Grade 2, 10/14 nodes, ER+/PR+, HER2- Surgery 1/19/2016 Lymph node removal: Left, Underarm/Axillary Surgery 1/19/2016 Prophylactic ovary removal Radiation Therapy 2/11/2016 Whole-breast: Breast, Lymph nodes, Chest wall Chemotherapy 4/1/2016 Taxotere (docetaxel) Hormonal Therapy Arimidex (anastrozole)
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Sep 29, 2018 10:40PM AliceBastable wrote:

I don't want ANYTHING with a pink ribbon or other symbol on it - do people think we want or need a souvenir of this? We have those every time we glance down. Ribbons aren't gonna make our mangled or flattened or burned or shriveled breasts suddenly "cute." And as someone who has had more than one kind of cancer, I'll be damned if I join a ribbon-of-the-month club. I just want to get past all of the current surgeries and treatments and get back to living my normal life. And I don't refer to myself as a cancer survivor any more than I would call myself a hip replacement survivor. I don't give any disease or physical malfunction that much hold over my life. As a friend of mine who has been stage four (ovarian cancer) for about ten years says, it's like Whack-a-Mole, if/when it shows up, you smack it down and get on with other things.

Gee, can you tell this is a pet peeve? 😀

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 10/29/2018 Whole-breast: Breast, Lymph nodes
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Sep 30, 2018 07:13PM Rrobin0200 wrote:

it’s so ironic that this topic is being discussed. Just this past weekend, I was telling family that I dread October, and that I want NOTHING to do with any type of BC fundraisers, conferences, etc. I look at my scars daily; that’s my reminder. I don’t think there’s anything wrong with it, maybe I’m wrong.

Dx 3/6/2017, DCIS, Left, 1cm, Stage 0, Grade 3, 0/4 nodes, ER-/PR- Surgery 3/31/2017 Mastectomy: Left; Prophylactic mastectomy: Right; Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant
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Oct 7, 2018 03:32PM Sassa wrote:

I was diagnosed in November 2006. I refuse to attend any pink events. Anyone who says something to me because I won't donate I inform that I donated two breasts.

I will not have any product that is labeled with pink ribbons in my house. This means I change my egg supplier from about the middle of September until they run out of pink ribbon stamped eggs.

Stephilosphy: Tell your mother to take a flying leap.Tell her you are strong enough to deal wight your diagnosis without wallowing in "Poor little me" events.

Dx 11/6/2006, IDC, 1cm, Stage IA, Grade 3, 0/9 nodes, ER-/PR-, HER2+
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Oct 7, 2018 03:42PM Meow13 wrote:

I have been asked to speak at a BC event and declined. I feel on the fence, I like to help anyone I can especially during the horrible first 2 months after diagnosis. Self exams are fine I am sure every woman that has an annual exam has been told to do them. No one ever talks are dense tissue, never heard it before I got diagnosed. I never knew mammograms were almost useless for me. Still at 60 years old I am told MRI needed if I live to 70 maybe I will be less dense.

We need better treatment, that is a message I would like to get through.

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Oct 7, 2018 05:50PM Traveltext wrote:

Good on you Meow13, I can see your point. When I get asked to speak at my small town’s pink event, I accept the offer and I make my point by turning out in blue amidst the sea of pink. Four years later and the town is very aware that men get this disease too. I also get featured in the local media, so this spreads the message further. Because public awareness about men getting bc is so low, I will chip away at this task.

The new ABCshow A Million Little Things features a man with bc attending a support group which is naturally made up exclusively of women. The story unfolds around his relationship with one woman. This sort of publicity will turbo charge our awareness campaign, for sure.


NED breast and prostate cancer. More on Male BC

Dx 03/14, IBC, Lgth. 2cm, Stge IIIB, Gde 2B, ER+/PR+, HER2- ; FEC x3, Taxol x3; Mx & 2/23 nodes; Rads x 33; now on tamoxofin.

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Oct 7, 2018 06:23PM Meow13 wrote:

Travel, did I tell you I saw a tv ad with a man on breast cancer. Haven't seen it recently but I was suprised and happy to hear they are trying to get the word out.

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Dec 9, 2018 09:44PM Gussy wrote:

stelophilosophy00 - I know exactly how you feel. I'm looking at age 80 in a month and I don't want to be defined as "cancer survivor" since I may not be here who knows how long. I have a new husband (1 year) and I want to spend as many years as possible with him. But I'm looking at the end of life here regardless.

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