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Topic: Pinktober Revolution

Forum: Emotional Crises: Anxiety, Depression & Other Emotional Effects —

Meet and support others who are affected by these issues around breast cancer fears, diagnosis and treatment.

Posted on: Aug 2, 2012 02:03AM - edited Dec 23, 2015 10:34PM by sas-schatzi

sas-schatzi wrote:

We support the efforts to bring awareness to breast cancer during the month of October, but we are frustrated by Pinking and Pinkwashing. Please, join us as we seek to improve knowledge re: breast cancer.

Vision Statement:To bring full awareness of the reality of breast cancer to the general public; the surgeries, the treatments and the horror that there is NO cure. To ensure that proceeds donated to the cause are publically noted and distributed in an appropriate manner for the community in which the funds were raised. To keep corporations accountable for the use of pink products and the medical field driven to move the cure closer to the finish line.

A Look at Charitable & Non-Charitable Organizations

Archive storage for Pintober Revolution-non discussion area

This is just a sampling of the bonehead comments we hear all the time. Thanks Scuttlers for finding this :)

scuttlers wrote: I may make a copy, put on the fridge, and play bingo for one week. If I get a "Bingo", hubby takes me to dinner. If I get a "full card", I get a full spa treatment. Then all those idiots would be wondering why I jump up and down and scream happily at their stupid and asinine remarks. :-). !!!!!

Breast Cancer Action webinar on Sexualization of breast cancer.

http://www.bcaction.org/resources/webinars/free-webinar-please-stop-staring-at-my-breasts-the-sexualization-of-breast-cancer/ Traveltext, 2015

Please ask Look Good Feel Better To Stop Giving Carcingoneic Products to Breast Cancer Patients through the Look Good Feel Better program JackBirdie, 2015.

American Cancer Society, Stop Giving Carcinogenic Cosmetics to Women With Cancer

Thurs. 29 October 2015 By Katy Skahill, Truthout | Op-Ed (BCO member Jackbirdie)

https://community.breastcancer.org/forum/102/topics/791442?page=89#post_4539402

Google hits sexualization Oct 2015 43,100

http://pinktobersucks.com/


Life's journey is not to arrive at the grave safely in a well preserved body, but rather to skid in sideways, totally worn out shouting "holy crap....what a ride".
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Oct 7, 2016 12:26AM VLH wrote:

Your unfortunate situation is a good example of where "awareness" is no substitute for a cure or at least more effective and / or less damaging treatments, tangandchris. Not that any of us are suggesting that periodic mammograms are a bad idea. Rather, that they don't guarantee that one won't battle advanced breast cancer.

Lyn

Dx 5/20/2016, IDC, 2cm, Stage IIB, Grade 3, 0/3 nodes, ER-/PR-, HER2- (FISH) Surgery 7/14/2016 Lumpectomy: Left Dx 7/18/2016, DCIS, Left, Stage 0, Grade 3, 0/3 nodes Surgery 7/25/2016 Lumpectomy: Left Chemotherapy 10/10/2016 AC + T (Taxol) Radiation Therapy 9/5/2017 Whole-breast: Breast
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Oct 8, 2016 09:10AM Wildtulip wrote:

Lyn, agree. Mammograms don't always catch it early. 😞

Dx at 46 "It's not simple to say, that most days I don't recognize me. I still remember that girl. She is gone, but she used to be mine." Sara Bareilles Dx 3/5/2015, IDC, Right, 6cm+, Stage IIIA, Grade 1, 3/23 nodes, ER+/PR+, HER2- Surgery 3/26/2015 Lymph node removal: Right; Mastectomy: Right; Prophylactic mastectomy: Left Chemotherapy 4/22/2015 Radiation Therapy 10/15/2015 Surgery 6/7/2016 Reconstruction (left): Tissue expander placement; Reconstruction (right): Latissimus dorsi flap, Tissue expander placement Hormonal Therapy Arimidex (anastrozole), Aromasin (exemestane), Femara (letrozole), Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone), Zoladex (goserelin)
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Oct 11, 2016 03:19PM shepkitty wrote:

Thought I'd post this info here -

In the Pink: Crowdsourcing effort takes aim at deadliest breast cancers

Forget the pink ribbons. Spitting in a tube for science is what unites a growing group of breast cancer patients taking part in a unique project to advance treatment for the deadliest form of the disease.

The Metastatic Breast Cancer Project

"Keep passing open windows" Dx 2/2013 Stage IV mets to bones/spine, IDC, Left, 1cm, Grade 3, ER+/PR-, HER2-. Dx 1/23/2017 brain mets. Bone Rads, 2 Kyphoplasty, 1 Craniotomy, 3 Gamma Knife. Xeloda May 2017. DX 11/7/17 DCIS,Left, Ibrance 6/18
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Oct 11, 2016 05:45PM Traveltext wrote:

Thanks for posting shepkitty, such an important cause.


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 12, 2016 06:08AM tessu wrote:

I hated Pinktober last year when I was in the middle of chemo. But I've changed my mind, sort of. A video interview is circulating now of one of the top HER2+ cancer researchers here in Finland, in which he thanks everyone who bought pink ribbons and such last year. He says the money he received from last year's campaign made possible his current treatment research project for HER2+ bc(that some of my patient friends are in). The Finnish economy is hurting and research grants are hard to get, so every little bit helps.

Be gentle with yourself. Dx 7/29/2015, IDC, Right, Grade 3, 0/9 nodes, ER+/PR-, HER2+ Hormonal Therapy 12/20/2016 Femara (letrozole) Chemotherapy CEF Surgery Mastectomy: Right Chemotherapy Taxotere (docetaxel) Targeted Therapy Herceptin (trastuzumab)
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Oct 18, 2016 09:16PM Spookiesmom wrote:

I have NO words.

Reoccurrence 3-19. Dx IDC, Stage IIIA, Grade 3
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Oct 19, 2016 03:51AM Traveltext wrote:

OMG. This puts a new meaning on battling BC.

Pinking Responsibly During Breast Cancer Awareness Month: HERE



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 19, 2016 06:46AM DivineMrsM wrote:

Traveltext, that article you provided the link to is so well written. I love the admonishment "Pink Responsibly". And the way the writer says "peak awareness hasbeen achieved."

found lump 12/22/10~er+/pr+/her2- stage iv bone mets~chemo~lumpectomy~radiation~arimidex~ "The world breaks everyone and afterward many are strong at the broken places."
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Oct 19, 2016 03:07PM - edited Oct 19, 2016 08:13PM by Traveltext

Peak awareness is a great term, I agree Divine, but it only holds for women and bc. Unfortunately, for guys, this state has not been reached since one study showed that 69% of people don't realise that men get this disease too. The pink charities can take a lot of the blame for this, IMO.


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 19, 2016 08:17PM Traveltext wrote:

My local town held a bc "awareness raising" event this morning and I went along to show that men get this disease too. Can you spot me?

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 19, 2016 09:23PM DivineMrsM wrote:

Wow, traveltext, talk about a picture being worth a thousand words! You are right, of course, that there must be much more effort done in letting the public know that men can get bc as well. Your visual is one way to dothat.

found lump 12/22/10~er+/pr+/her2- stage iv bone mets~chemo~lumpectomy~radiation~arimidex~ "The world breaks everyone and afterward many are strong at the broken places."
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Oct 21, 2016 09:31PM gardengypsy wrote:

Thinking of you, Toad. x

Dx 10/29/2015, ILC/IDC, Left, 5cm, Stage IIIA, Grade 3, 1/1 nodes, ER+/PR+, HER2- Surgery 12/3/2015 Lymph node removal: Sentinel; Mastectomy; Reconstruction (left): Tissue expander placement Chemotherapy 1/9/2016 AC + T (Taxol) Surgery 5/23/2016 Hormonal Therapy 5/28/2016 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Radiation Therapy 6/6/2016 Whole-breast: Breast, Lymph nodes, Chest wall
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Oct 21, 2016 10:44PM kathindc wrote:

Travel text, love he bold statement you made at the awareness event. Did the others catch on

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Oct 22, 2016 02:12AM Traveltext wrote:

Yes kathindc, they not only caught on but invited me to give a talk on male bc. More exciting is that BCO wants to work with me to improve things for men here.


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 22, 2016 02:55AM shepkitty wrote:

ThumbsUp

"Keep passing open windows" Dx 2/2013 Stage IV mets to bones/spine, IDC, Left, 1cm, Grade 3, ER+/PR-, HER2-. Dx 1/23/2017 brain mets. Bone Rads, 2 Kyphoplasty, 1 Craniotomy, 3 Gamma Knife. Xeloda May 2017. DX 11/7/17 DCIS,Left, Ibrance 6/18
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Oct 22, 2016 07:55AM DivineMrsM wrote:

Traveltext, glad to hear you will be collaborating with this site to improve the outreach and information to men.

found lump 12/22/10~er+/pr+/her2- stage iv bone mets~chemo~lumpectomy~radiation~arimidex~ "The world breaks everyone and afterward many are strong at the broken places."
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Oct 22, 2016 08:19AM VLH wrote:

I was pressed too see that Susan G. Komen announced an emphasis on research. I don't know how that will translate dollarwise, but at least it recognizes that need for help for metastatic cancer and cancers like my TNBC, that have limited treatment options and a higher mortality rate.

Here's some info from their site:

THE RESEARCH IMPERATIVE

We will find new treatments for the most aggressive forms of breast cancer that are killing 40,000 people in the U.S. each year. Our focus is on:

  • Understanding and finding more effective treatments for metastatic disease (cancer that has spread to other parts of the body – also known as stage IV).
  • Developing better therapies for aggressive forms of breast cancer that become resistant to treatment over time, such as Luminal B (HR+/HER2+), triple negative and inflammatory breast cancers.
  • Leveraging the use of transformative, next-generation technology to detect breast cancer at the very earliest stage, before it has spread or returned, and when treatment is most effective.

Our commitment to the most promising, innovative and meaningful research will never waver. We will not stop until every woman and man with breast cancer can be told: "There is hope – and help – for you."

Dx 5/20/2016, IDC, 2cm, Stage IIB, Grade 3, 0/3 nodes, ER-/PR-, HER2- (FISH) Surgery 7/14/2016 Lumpectomy: Left Dx 7/18/2016, DCIS, Left, Stage 0, Grade 3, 0/3 nodes Surgery 7/25/2016 Lumpectomy: Left Chemotherapy 10/10/2016 AC + T (Taxol) Radiation Therapy 9/5/2017 Whole-breast: Breast
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Oct 22, 2016 06:18PM Traveltext wrote:

Thanks for reporting this VLH. It's great that they are moving their funding more towards research. The main problem people have with Komen is the high percentage they spend on admin expenses, money could be better spent on more research.


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 22, 2016 10:24PM VLH wrote:

Agreed on the administrative expense, TravelText. Charity Navigator shows there are other breast cancer charities that do far better. It's unfortunate given that Susan G. Komen has such exceptional name recognition compared to other groups that use their resources more efficiently.

Lyn

Dx 5/20/2016, IDC, 2cm, Stage IIB, Grade 3, 0/3 nodes, ER-/PR-, HER2- (FISH) Surgery 7/14/2016 Lumpectomy: Left Dx 7/18/2016, DCIS, Left, Stage 0, Grade 3, 0/3 nodes Surgery 7/25/2016 Lumpectomy: Left Chemotherapy 10/10/2016 AC + T (Taxol) Radiation Therapy 9/5/2017 Whole-breast: Breast
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Jan 13, 2017 02:20AM Traveltext wrote:

This is way out of the pink season, even so this very long, but excellent, New York Times article is worth reading.

Our Feel-Good War on Breast Cancer
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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Jan 13, 2017 09:22AM - edited Jan 13, 2017 09:24AM by DivineMrsM

Traveltext, I read that excellent article when it came out in 2013 and it truly made an impact on me. It stated all the things I was feeling about the hoopla surrounding this disease but could not put into words. It helped me find my voice on the subject of bc and I was eventually able to put together a letter in my own words on the need for true action against and not hollow awareness of bc to send to the editor of my local newspaper to have printed during October, bc awareness month

I put this post just now on the stage iv forum and want to share it here:

I have recently received numerous FB pms requesting I put a heart on my FB page for bc awareness. Perhaps some of you have, too. I did not respond or post a heart. I am way beyond something that cutesy, I know most of us are.

Today, a friend (who does not have bc) shared a post from a woman with stage iv bc, Erin Smith Chieze,in response to the heart requests. I think I read that the post has gone viral. I found it informative and much more effective than a heart. I shared it on FB, including my own comment that I received the heart requests with the loving well-intentions they were sent, but that we must move past ineffective displays of "awareness" and distribute more effective information on the disease.

Here is the post I shared.

Erin Smith Chieze

January 10 at 8:03pm ·

In the past few days, I have received quite a few private messages about a "game" going around where you post a heart, then you are secretly supposed to state it is for breast cancer awareness. This is my response to all of these messages.

Someone once posted a picture on Facebook of what breast cancer can look like. Not feel, but look like. In December of 2015 when I saw an indentation that looked like one of those pictures, I instantly knew I had breast cancer. I tried to feel for a tumor, but my tumor was non palpable. I was diagnosed with breast cancer 5 days later and with stage 4 the following month. A heart did nothing for awareness. I knew what breast cancer was. I knew all about self exams, but a picture of what to look for keyed me into knowing I had a terminal disease. We need to give REAL information, not cute hearts. Without having seen a picture randomly with real information, I wouldn't have known what to look for. Do us a favor, stop playing games with my life and start truly helping people. Metastatic breast cancer treatment research and real awareness.

This is a photo I have found that is very similar to the one I originally saw. PLEASE, stop playing games that do not actually promote awareness, they often cause people to tune out anything that might even mention the word awareness. So if you truly want to help people WITH cancer, or those who will GET cancer, share photos like this one. I wish I remembered who posted the original picture I saw, it truly did make a difference for me.

I found this photo at www.worldwidebreastcancer.com/...…/

Editing to add. I have been contacted by the designer for the photograph that I have used Corrine Ellsworth Beaumont and while I did cite the URL that I found the picture from, I would also like to add the Facebook page of the organization that started the know your lemons campaign. Credit absolutely must be given to the wonderful people who are working so hard to get accurate and memorable information out to the public. I just happened upon this photo and used it in order to make my point, but I am SO thankful that other women and men may see this and know what they are possibly looking at and seek immediate medical attention.

www.facebook.com/worldwidebrea...…

found lump 12/22/10~er+/pr+/her2- stage iv bone mets~chemo~lumpectomy~radiation~arimidex~ "The world breaks everyone and afterward many are strong at the broken places."
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Jan 13, 2017 01:57PM - edited Jan 14, 2017 10:19PM by woodstock99

Thank you. I too was getting the red heart requests or wall posts this week and deleted them & told a few people do not post. yesterday was my1-year surgery anniversary and I was in no mood this week. I think i will copy & paste the above and share this instead. Much appreciated!

1/12/16 BMX. Stage 1/DCIS.
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Jan 13, 2017 02:27PM Artista928 wrote:

A friend of mine posted just a plain pink heart. Someone asked what it was for and she said it's for those battling bc. I thought it was nice and simple.

Dx'd at 50. Doing it all, all by myself. Stopped Letrozole after 5 weeks. Debilitating se's. Back on Tamox now. Dx 6/2/2015, IDC, Left, 6cm+, Stage IIIA, Grade 3, 1/4 nodes, ER+/PR+, HER2- (DUAL) Surgery 8/6/2015 Lymph node removal: Left, Sentinel; Mastectomy: Left; Prophylactic mastectomy: Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Chemotherapy 11/3/2015 AC + T (Taxotere) Radiation Therapy 5/2/2016 Whole-breast: Breast, Lymph nodes, Chest wall Hormonal Therapy 6/28/2016 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery 12/9/2016 Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant Hormonal Therapy 2/14/2017 Femara (letrozole) Hormonal Therapy 3/26/2017 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery 9/1/2017 Reconstruction (right): Fat grafting, Silicone implant
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Jan 13, 2017 04:33PM Traveltext wrote:

Divine, thanks for pointing out the date on the NYT article. I'd have to say it's as relevant now as it was a few years ago. The lemons pic is excellent. Balthus, your response to the heart differed from Artistas, which is fine IMO, since all points of view are valid. For me, I'm even more focussed on my area of interest and have just produced this infographic:


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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Jan 13, 2017 04:45PM kathindc wrote:

Traveltext, powerful message.

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Aug 24, 2017 08:55AM Spookiesmom wrote:

it's starting early in Tampa. Acting police chief kicking off a Real Men Wear pink campaign. Some badges are pink. And you can take a selfie with one of their pink police cars.

Reoccurrence 3-19. Dx IDC, Stage IIIA, Grade 3
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Aug 24, 2017 10:52AM Zillsnot4me wrote:

Nooo

Liver 1/ 2016, Xgeva 9/2015, Bones 4/2015, Lungs 4/2013 Dx 4/2013, 4cm, mets, ER+/PR+, HER2- Surgery 4/29/2013 Lymph node removal: Right; Mastectomy: Right; Prophylactic mastectomy: Left Chemotherapy 5/23/2013 AC Hormonal Therapy 10/2/2013 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Radiation Therapy 11/6/2013 Breast, Lymph nodes Surgery 9/25/2015 Prophylactic ovary removal Hormonal Therapy 1/7/2016 Femara (letrozole) Targeted Therapy 1/7/2016 Ibrance (palbociclib) Hormonal Therapy 2/4/2016 Arimidex (anastrozole) Hormonal Therapy 4/24/2017 Faslodex (fulvestrant) Chemotherapy 11/16/2017 Xeloda (capecitabine)
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Aug 24, 2017 02:00PM Artista928 wrote:

We already are aware! Everyone is by now! ah!


Dx'd at 50. Doing it all, all by myself. Stopped Letrozole after 5 weeks. Debilitating se's. Back on Tamox now. Dx 6/2/2015, IDC, Left, 6cm+, Stage IIIA, Grade 3, 1/4 nodes, ER+/PR+, HER2- (DUAL) Surgery 8/6/2015 Lymph node removal: Left, Sentinel; Mastectomy: Left; Prophylactic mastectomy: Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Chemotherapy 11/3/2015 AC + T (Taxotere) Radiation Therapy 5/2/2016 Whole-breast: Breast, Lymph nodes, Chest wall Hormonal Therapy 6/28/2016 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery 12/9/2016 Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant Hormonal Therapy 2/14/2017 Femara (letrozole) Hormonal Therapy 3/26/2017 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery 9/1/2017 Reconstruction (right): Fat grafting, Silicone implant
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Aug 24, 2017 02:42PM Jujube43 wrote:

I think awareness has actually gone too far. I read a lot on BCO and I see so many posts about women who are riddled with anxiety about having breast cancer. Now is the time for much more research. I am truly dreading October. It's become a circus.

Dx 8/2/2013, IBC, 6cm+, Stage IIIC, Grade 2, 17/17 nodes, ER+/PR+, HER2- Chemotherapy 8/19/2013 AC + T (Taxol) Surgery 2/11/2014 Mastectomy: Right Radiation Therapy 3/12/2014 Breast, Lymph nodes Dx 7/11/2014, IBC, Right, 3cm, Stage IIIC, Grade 2, 17/17 nodes, ER+/PR+, HER2- Hormonal Therapy 7/12/2014 Femara (letrozole)
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Aug 24, 2017 04:40PM Freya wrote:

I know ask where the money is going if anyone is fundraising for BC. I am so disappointed in many BC organisations, the majority of the money still goes to awareness, otherwise known as self advertising. 5% might get to research, what a joke. The relay for life thing, they have something for those who died, something for those who survived, but stage IV..........hmmmm.

Don't get me started on the inappropriate products packaged in pink............how about a pink fracking drill bit,

Dx 2009, ILC/IDC, Right, 6cm+, Stage IV, metastasized to bone/liver, Grade 3, 14/22 nodes, ER+/PR+, HER2-

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