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Topic: I'm not on a "journey" and I'm not a "warrior." Who is with me?

Forum: Mental Health: Because Cancer Doesn't Just Affect Your Breasts —

Meet and support others who are affected by these issues around anxiety, depression & other emotional effects.

Posted on: Dec 7, 2020 01:49PM

MochiPie wrote:

No offense to those of you who see this as such, but I do not. I feel like that symbolism is tantamount to a quest for enlightenment and that is bullshit. It's hard not to bristle when people without this diagnosis assume that's who I am now. I was never that kind of person before, and I don't see myself becoming that kind of person in the future. I'm not sure if mental health is the right place to put this, but the way I see my diagnosis and treatment versus the way most other people categorize it makes me feel as if I'm the odd one out.

My take is that I have a disease that is being treated, not fought. I received tests and a diagnosis that stressed me out more than I thought anything could, rocked me to my core, and brought an immediate pivot to my perspective and priorities. I suspect that by the time I am finished with treatment, it will change me more, possibly permanently, possibly not. It's definitely transformative, physically and mentally, no doubt about it.

Can this be a safe space to bitch about that touchy feely stuff?

Dx 11/3/2020, IDC, Right, <1cm, Stage IA, Grade 3, 0/2 nodes, ER-/PR-, HER2+ (IHC) Surgery 11/11/2020 Lumpectomy: Right Chemotherapy 12/8/2020 Taxol (paclitaxel) Targeted Therapy 12/8/2020 Herceptin (trastuzumab) Radiation Therapy 3/22/2021 Whole-breast: Breast
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Dec 9, 2020 12:28PM Terricka wrote:

I am with you! I don't see this as a fight. That is too much of a burden.

Black woman, 33, child 4yr old F
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Dec 9, 2020 07:27PM - edited Dec 9, 2020 07:29PM by Olma61

Not to veer off the topic at hand, but that info on black women and Herceptin really struck me too. Turns out BCO has an article on this disparity. Since this was a retrospective study of the SEER database, the reasons behind the gap are not known, but the writers are speculating that it may well be due to payment issues, at least in part, as illimae says.

Since there's a gap with older women in generaltoo, they mention not having a Medicare supplement and not being able to afford the co-pay as a possible reason. Since there are a good number of Stage 1 women in that table too, I'm wondering also,if some patients are declining chemo and maybe doctors aren't pushing hard enough when they do.

https://www.breastcancer.org/research-news/older-and-black-women-not-getting-herceptin

10/30/2017 Xgeva for bone mets 5/31/2018 Taxol finished! "If one just keeps on walking, everything will be all right” - Kierkegaard Dx 8/3/2017, IDC, Right, 2cm, Stage IV, metastasized to bone, Grade 2, ER+/PR+, HER2+ (IHC) Targeted Therapy 10/28/2017 Perjeta (pertuzumab) Targeted Therapy 10/28/2017 Herceptin (trastuzumab) Chemotherapy 10/29/2017 Taxol (paclitaxel) Hormonal Therapy 5/14/2018 Arimidex (anastrozole) Radiation Therapy 5/29/2019 External: Bone
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Dec 9, 2020 08:16PM 2019whatayear wrote:

Olma I wish we had a like button on here. :-)

5/6/2019 IDC 2cm, micromet 1/9 nodes, BRCA2+, ER+, PR+, HER- BMX 6/2019, A/C & Taxol 2019, Radiation, BSO - preventative 2/2020, Letrozole 3/1/2020, Started Lynparza for 1 year preventative on 7/18/2021
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Dec 9, 2020 08:57PM illimae wrote:

Olma, thanks for doing some digging. I really wish these findings would include more detailed info. I hate seeing the disparities but how can we even begin to try solving problems without the root cause, it’s frustrating.

Diagnosed at 41 Stage IV De Novo Dx 11/16/2016, IDC, Left, 5cm, Stage IV, metastasized to bone, Grade 3, 3/13 nodes, ER+/PR-, HER2+ (IHC) Chemotherapy 1/1/2017 Abraxane (albumin-bound or nab-paclitaxel) Targeted Therapy 1/1/2017 Herceptin (trastuzumab) Targeted Therapy 1/1/2017 Perjeta (pertuzumab) Surgery 6/26/2017 Lumpectomy: Left; Lymph node removal: Underarm/Axillary Radiation Therapy 8/10/2017 Breast, Lymph nodes Dx 10/5/2017, IDC, Left, 5cm, Stage IV, metastasized to brain, Grade 3, 3/13 nodes, ER+, HER2+ (IHC) Radiation Therapy 10/19/2017 External: Brain Radiation Therapy 4/18/2018 External: Brain Radiation Therapy 5/22/2019 External: Brain Surgery 1/21/2020 Radiation Therapy 2/16/2020 External: Brain Radiation Therapy 7/20/2020 External: Bone Radiation Therapy 12/4/2020 External: Brain Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Targeted Therapy Tukysa (tucatinib) Chemotherapy Xeloda (capecitabine)
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Dec 10, 2020 09:43AM - edited Dec 10, 2020 03:18PM by Shar2020

This Post was deleted by Shar2020.
Dx 6/1/2020, IDC, ER+/PR+, HER2+
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Dec 10, 2020 05:33PM flashlight wrote:

I was looking at the history of the pink ribbon. As TIME explained, Ford and Rockefeller's candidness helped many others confront "a little understood disease that was once discussed only in whispers." Other notable women who came forward about their experiences with breast cancer in the 1970s included writer Babette Rosmond, actor Shirley Temple Black, chef Julia Child and NBC news correspondent Betty Rollin.

During the 1980s, AIDS eclipsed cancer as the major health crisis commanding national attention. AIDS activists became known for their confrontational style of politics, as groups like ACT-UP staged theatrical guerilla street protests in order to lobby for government research money. Their use of symbolism, in the form of a red ribbon, and their demands for increased federal funding influenced the next wave of breast cancer activism.

The pink ribbon became a symbol of breast cancer awareness as the result of efforts by Self Magazine, the cosmetics industry and the Susan G. Komen foundation in the early 1990s. The concept was first inspired by breast cancer patient Charlotte Hayley, who individually distributed thousands of peach colored ribbons in her community, along with cards that encouraged funding for cancer prevention. When representatives from Estee Lauder and Self expressed interest in her idea, Hayley turned them away because she was worried about the cause becoming commercialized—so they changed the color of the ribbon from peach to pink. The first pink ribbons were handed out at the 1991 Susan G. Komen Race for the Cure in New York City, the same year that saw the founding of the National Breast Cancer Coalition.

Today, activists are pivoting their focus from awareness and early detection towards saving the lives of patients who have progressed to advanced stage IV disease, or metastatic breast cancer. And breast cancer activism has evolved from individual patients voicing their own experiences, to the formation of community support groups for cancer survivors, to political organizing for a cure. It has grown from a small grassroots movement to a widespread network of professional advocacy. Critics point out that, along the way, the struggle against breast cancer has been exploited by companies co-opting the pink ribbon to advertise their own products or bolster their image. But before all of that, it was a movement about giving women the courage to speak openly about their bodies, and the agency to decide their preferred course of treatment when faced with a serious illness.


Dx 11/15/2018, IDC, Left, 1cm, Stage IA, Grade 2, 0/1 nodes, ER+/PR-, HER2- Dx DCIS, Left, <1cm, Stage 0, Grade 1, 0/1 nodes Radiation Therapy Whole-breast Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery Lumpectomy: Left
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Dec 10, 2020 05:49PM Olma61 wrote:

flashlight, that’s a good reminder...similar to the word “survivor “ being used instead of “patient” ...at one time, that was considered a step forward, similar to calling sexual assault survivors, survivors instead of “rape victims”

I am not keen on being called a “cancer patient” outside of my doctors office...even though, for me in Stage IV ,being called a “survivor “ is kinda dicey, too....I prefer to think of myself as “surviving” a day at a time versus being “a patient” for the rest of my life.

10/30/2017 Xgeva for bone mets 5/31/2018 Taxol finished! "If one just keeps on walking, everything will be all right” - Kierkegaard Dx 8/3/2017, IDC, Right, 2cm, Stage IV, metastasized to bone, Grade 2, ER+/PR+, HER2+ (IHC) Targeted Therapy 10/28/2017 Perjeta (pertuzumab) Targeted Therapy 10/28/2017 Herceptin (trastuzumab) Chemotherapy 10/29/2017 Taxol (paclitaxel) Hormonal Therapy 5/14/2018 Arimidex (anastrozole) Radiation Therapy 5/29/2019 External: Bone
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Dec 10, 2020 06:07PM MountainMia wrote:

Olma, I think the only time I've called myself a "cancer patient" was when my husband took me to the emergency room at the end of last year (2019.) I was diagnosed and treated in 2019, finished treatment in September. But on 12/30 I passed out, hit my head, had concussion. When he rolled me to the check-in counter at ER, first thing I said was, "I'm a cancer patient." I figured they should know that up front.

The rain comes and the rain goes, but the mountain remains. I am the mountain.
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Dec 10, 2020 07:38PM Bennette wrote:

I just joined here mainly because I saw this post. It is a whole range of emotions and I'm tired of trying to be positive for others. I tend to be a caretaker anyway, so am really trying to watch this. I grew up with that whole "up by your boot straps", "chin up" bull shit and it didn't serve me well. I'm newly diagnosed and am already feeling some of the my cancer isn't that bad, glad they found it early stuff.

I have a lumpectomy planned for next Friday. I'm not even sure what half the acronyms are. It's really overwhelming.

So I have found my people. No pink hats or ribbons for me either.

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Dec 10, 2020 10:50PM Moderators wrote:

Welcome, Bennette. It can all be so very overwhelming, and we hope this community can be a source of support and encouragement and a place to express yourself and all of the emotions that come with a diagnosis. Best of luck on your lumpectomy, we hope your recovery is swift! Please let us know how it goes, we're here for you.

The Mods

To send a Private Message to the Mods: community.breastcancer.org/mem...
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Dec 10, 2020 10:57PM 2019whatayear wrote:

welcome to the club we’d all love to see disbandBennette! Yes it’s a whole new language to learn -

5/6/2019 IDC 2cm, micromet 1/9 nodes, BRCA2+, ER+, PR+, HER- BMX 6/2019, A/C & Taxol 2019, Radiation, BSO - preventative 2/2020, Letrozole 3/1/2020, Started Lynparza for 1 year preventative on 7/18/2021
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Dec 11, 2020 06:03PM nopink2019 wrote:

MochiPie - You are not the odd one out! While I'll never be finished with treatment, I do not expect to gain enlightment. One of the 1st things I did when I when I could gather my senses after MBC diagnosis was to write a sealed note to my DH that my obit shoulld not include "bravery", "battle", "journey" etc. I will die of breast cancer. Fact.

LOL re:suing the travel agent! I'll remember that line the next time someone mentions I'm on a journey. And brave for going through treatment? I'll tell them the option is to stop treatment, that's what will take bravery.

Dx 2008, IDC, Stage IA, Grade 3, ER+/PR-, HER2- Dx 2019, Stage IV, metastasized to bone/liver/lungs, ER+/PR-, HER2- Chemotherapy 8/22/2019 Taxotere (docetaxel) Chemotherapy 9/12/2019 Xeloda (capecitabine) Targeted Therapy 11/8/2019 Kisqali Hormonal Therapy 11/8/2019 Faslodex (fulvestrant) Targeted Therapy 5/10/2021 Afinitor (everolimus) Hormonal Therapy 5/10/2021 Aromasin (exemestane) Chemotherapy 11/14/2021 Xeloda (capecitabine)
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Dec 11, 2020 07:30PM Nel wrote:

Love this thread and have only read about half the posts. This is not a journey for me, I am not a survivor (have stage 4 and will eventually die from BC),I will not loose a battle ( it is not my fault I will die, research has not been done or caught up with what I need) and god forbid, I am not an inspiration!!! I am a woman living with breast cancer, the best way I know how. Some days are better than others physically and mentally, but I am doing pretty well.

Have I changed - I care much less, and I never cared much, about what others think. I speak my mind more frequently and use the word fuck more frequently and was always a part of my vocabularly. I am more me and I try to be more present in the moments

I am doing the best I can, as we all are in what is a challenging situation

Be well

Nel

You can't stop the waves, but you can learn to surf Dx 9/27/2011, IBC, Stage IIIB, ER-/PR-, HER2+ Dx 8/6/2013, IBC, Stage IV, ER-/PR-, HER2+
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Dec 12, 2020 05:54AM Traveltext wrote:

nopink, this is the absolute truth: “I'll tell them the option is to stop treatment, that's what will take bravery.“

Another thing to remember is that you don’t fail any treatment, the treatment fails you.

A few years ago some BCO folks put up this site: http://PinktoberSucks.com



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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Dec 12, 2020 02:49PM MicheleH57 wrote:

Thank you! While I'm NOT averse to the use of the term "journey," I sure do not like the term "survivor." And forget "warrior."

I had a lumpectomy in October and am in the middle of radiation. My experience with cancer will take me into AI in January and

I will move through that treatment for 5 years.

I'm not going to die of breast cancer. The possibility of recurrence for me is like 3%. Which is excellent.

So I'm likely going to live for another 20 to 30 or maybe 40 years. (I'm 63) God willing.

I really do hope we can update the verbiage and terminology, particularly as we are now in a much better place with *treatments*

which mean life and better life and long life.

Yes, I'm sensitive to the whole experience and the grades of experience and severity.

But the more I learn and the more women I meet up with who've been through this, the more I do believe those terms have just about - almost, on the edge, tipping over, going there in a minute - outlived any real usefulness.


Dx 10/2020, IDC, Left, <1cm, Stage IA, Grade 1, 0/1 nodes, ER+/PR+, HER2- Radiation Therapy 12/9/2020 Whole-breast: Breast Hormonal Therapy 12/30/2020 Arimidex (anastrozole)
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Dec 12, 2020 05:32PM AngieB92 wrote:

I love this thread. I have weighed the many labels given to folks like us and none seemed to fit. Verbiage was very important to me during my cancer experience.
I hesitate to call it a journey because, as was mentioned before, we’re all on a journey anyway - cancer was just the surprise wrong turn down a road with few streetlights.

When diagnosed and before I met with my breast surgeon/oncologist, I referred to my situation as “I have been diagnosed with breast cancer.” After I received my treatment plan, I referred to myself as “I am in treatment for breast cancer.” This helped me realize that I was moving forward in fighting breast cancer

Now that active treatment is over, I can’t quite get the “survivor” word to flow as easily. Same with “warrior.” I may look at myself as a warrior for fighting through chemo, surgery, and Kadcyla- but I survived more than just that. I pulled myself out of despair many, many times.

I am still on my life’s journey. I am back on a well-lit road. I still can’t all myself “survivor” or “warrior” so I will just call myself Angie. Angie, who went through treatments for breast cancer.

Dx 8/8/2019, IDC, Left, 1cm, Stage IA, Grade 2, 0/6 nodes, ER+/PR+, HER2+ (IHC) Targeted Therapy 9/17/2019 Perjeta (pertuzumab) Targeted Therapy 9/17/2019 Herceptin (trastuzumab) Surgery 3/3/2020 Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Targeted Therapy 4/10/2020 Kadcyla (T-DM1, ado-trastuzumab)
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Dec 12, 2020 06:15PM MountainMia wrote:

Angie, that's exactly how I phrase it. I was diagnosed with and treated for breast cancer.

The rain comes and the rain goes, but the mountain remains. I am the mountain.
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Dec 12, 2020 07:33PM 2019whatayear wrote:

I think I like the term Ned'er. No evidence of disease and may it stay that way. :-)

5/6/2019 IDC 2cm, micromet 1/9 nodes, BRCA2+, ER+, PR+, HER- BMX 6/2019, A/C & Taxol 2019, Radiation, BSO - preventative 2/2020, Letrozole 3/1/2020, Started Lynparza for 1 year preventative on 7/18/2021
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Dec 12, 2020 09:22PM - edited Dec 12, 2020 09:23PM by WC3

If anything, the doctors and chemo nurses are the warriors...I guess I'm kind of the battle field.

Pathologic complete response (pCR) to chemotherapy. 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) Surgery Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Hormonal Therapy Arimidex (anastrozole), Zoladex (goserelin)
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Dec 12, 2020 09:33PM - edited Dec 13, 2020 11:32AM by moth

lol WC3. MO -> chemical weapons; RO -> nuclear weapons; radiology -> reconnaissance; IR -> spec ops; BS -> combat; GP -> staff sergeant

nurses -> communications + GI + mechanic + logistics


I take weekends off

Initial dx at 50. Seriously?? “Sometimes the future changes quickly and completely and we’re left with only the choice of what to do next." blog: Never Tell Me the Odds

Dx 12/2017, IDC, Left, 1cm, Stage IA, Grade 3, 0/5 nodes, ER-/PR-, HER2- (IHC) Surgery 12/12/2017 Lumpectomy: Left; Lymph node removal: Sentinel Chemotherapy 2/14/2018 AC + T (Taxol) Radiation Therapy 8/13/2018 Whole-breast: Breast Dx 2/2020, IDC, Stage IV, metastasized to liver/lungs, Grade 3, ER-/PR-, HER2- Chemotherapy 3/18/2020 Taxol (paclitaxel) Immunotherapy 3/19/2020 Tecentriq (atezolizumab) Chemotherapy 11/26/2020 Abraxane (albumin-bound or nab-paclitaxel) Dx 12/9/2020, IDC, Right, Stage IV, metastasized to lungs, Grade 3, ER+/PR-, HER2- (IHC) Radiation Therapy 12/9/2020 External Hormonal Therapy 12/16/2020 Femara (letrozole) Dx 1/28/2021, IDC, Left, Stage IV, metastasized to bone Radiation Therapy 3/3/2021 External: Bone
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Dec 13, 2020 11:23AM Rain88 wrote:

Happy

Dx 7/2019, IDC: Mucinous, Right, 1cm, Stage IA, Grade 1, 0/10 nodes, ER+/PR+, HER2- Radiation Therapy 11/27/2019 Whole-breast: Breast Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery Lumpectomy: Right
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Dec 13, 2020 11:41AM Spookiesmom wrote:

❤️❤️❤️❤️Moth.

First time IDGgrade 3, stage 3. Second time, found lump myself. That made me stage 4. Dx IDC, Stage IIIA, Grade 3
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Dec 21, 2020 09:07PM illimae wrote:

Thought this group might appreciate this one, lol


Diagnosed at 41 Stage IV De Novo Dx 11/16/2016, IDC, Left, 5cm, Stage IV, metastasized to bone, Grade 3, 3/13 nodes, ER+/PR-, HER2+ (IHC) Chemotherapy 1/1/2017 Abraxane (albumin-bound or nab-paclitaxel) Targeted Therapy 1/1/2017 Herceptin (trastuzumab) Targeted Therapy 1/1/2017 Perjeta (pertuzumab) Surgery 6/26/2017 Lumpectomy: Left; Lymph node removal: Underarm/Axillary Radiation Therapy 8/10/2017 Breast, Lymph nodes Dx 10/5/2017, IDC, Left, 5cm, Stage IV, metastasized to brain, Grade 3, 3/13 nodes, ER+, HER2+ (IHC) Radiation Therapy 10/19/2017 External: Brain Radiation Therapy 4/18/2018 External: Brain Radiation Therapy 5/22/2019 External: Brain Surgery 1/21/2020 Radiation Therapy 2/16/2020 External: Brain Radiation Therapy 7/20/2020 External: Bone Radiation Therapy 12/4/2020 External: Brain Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Targeted Therapy Tukysa (tucatinib) Chemotherapy Xeloda (capecitabine)
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Dec 21, 2020 09:22PM MinusTwo wrote:

Oh yes !!! That's a great one.

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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Dec 21, 2020 09:37PM Traveltext wrote:

illimae, so true. And each time you pass on the disease via your genes, it gets to die again.

Happy Holidays everyone. Stay safe and fingers’ crossed for a good 2021.


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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Dec 22, 2020 07:29AM AngieB92 wrote:

Love it! Happy Holidays!!

Dx 8/8/2019, IDC, Left, 1cm, Stage IA, Grade 2, 0/6 nodes, ER+/PR+, HER2+ (IHC) Targeted Therapy 9/17/2019 Perjeta (pertuzumab) Targeted Therapy 9/17/2019 Herceptin (trastuzumab) Surgery 3/3/2020 Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Targeted Therapy 4/10/2020 Kadcyla (T-DM1, ado-trastuzumab)
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Dec 22, 2020 12:48PM Sunshine99 wrote:

I love it. I should put that in my obituary: "She died, but the cancer died, too."

Perfect!

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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Dec 22, 2020 01:43PM MochiPie wrote:

It’s perfect.

Dx 11/3/2020, IDC, Right, <1cm, Stage IA, Grade 3, 0/2 nodes, ER-/PR-, HER2+ (IHC) Surgery 11/11/2020 Lumpectomy: Right Chemotherapy 12/8/2020 Taxol (paclitaxel) Targeted Therapy 12/8/2020 Herceptin (trastuzumab) Radiation Therapy 3/22/2021 Whole-breast: Breast
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Dec 28, 2020 06:26PM - edited Dec 28, 2020 06:26PM by cake8icing

you are safe with me on this. I hate all that survivor/pink ribbon/ this will make you stronger crap. No one asks for this and we all simply deal with it the best we can.

Dx 2/14/2020, DCIS, Left, 3cm, Stage 0, Grade 3, 0/1 nodes, ER+/PR+ Surgery 3/20/2020 Lymph node removal: Sentinel; Mastectomy: Left
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Dec 28, 2020 06:42PM Crojas1221 wrote:

This is such a refreshing (and funny) thread to come across. I'm so uncomfortable with the language of positivity, not just around cancer, but in the general zeitgeist. It's good to be positive. Healthy, yes. But there comes a time for negativity and outrage and just plain feeling like shit. Why not? I'm a human not a perfectly encoded happy robot.



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