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Topic: Ina Jaffe of NPR “Why I Kept My Cancer A Secret…

Forum: Stage IV/Metastatic Breast Cancer, Open to All To Contribute —

Topics here are started by members with a Stage IV/Metastatic Breast Cancer diagnosis, but open to all members to contribute to discussions. Please note that there is a separate forum, Stage IV/Metastatic Breast Cancer ONLY, where topics are open only to those members.

Posted on: Jun 22, 2021 07:42PM

2019whatayear wrote:

And Why I Won’t Anymore”


https://www.npr.org/2021/06/22/1009065462/breast-cancer-research-funding-metastatic-disease

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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Jun 22, 2021 08:18PM - edited Jun 22, 2021 08:50PM by ShetlandPony

Best mbc article I have seen in a long time! She has her facts straight and she tells it like it is.

"Which brings us back to the primary reason for disclosing my secret: outrage."

2011 Stage I ITCs sn, premenopausal, Oncotype 16. 2014 Stage IV mets breast,liver. TaxolNEAD. Ibrance+letrozole 2yrs. Fas+afinitor nope. XelodaNEAD 2yrs. Eribulin,Doxil nope. SUMMIT FaslodexHerceptinNeratinib for Her2mut NEAD Dx 2011, ILC, 1cm, Stage IA, Grade 1, 0/1 nodes, ER+/PR+, HER2- Dx 2014, ILC, 2cm, Stage IV, metastasized to liver/other, Grade 2, ER+/PR+, HER2- Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Radiation Therapy Whole-breast: Breast Surgery Lumpectomy
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Jun 22, 2021 08:28PM - edited Jun 22, 2021 09:09PM by exbrnxgrl

Wonderful opinion piece! It really is mind boggling when you think what a paltry amount of the bc funding pot goes to mbc, the only type of bc that kills you! It's not surprising however, to see that the author had many misconceptions about bc as I think many do, including me! I had no idea there were different types of bc and no real understanding of staging or hormone profiles.I will say that I guess I am not normal because the one thing I did not do was stop eating, sleeping or sob for days. Yes, I was upset but I have a strong pragmatic streak mixed with optimism. BTW, I told anyone who asked me about my bc. I am not, by nature, a secret keeper and I wanted to write my own bc narrative and nip rumors and misconceptions in the bud. I also never felt that cancer needs to be hidden or spoken of in whispers. If some people feel cancer is stigmatized it is partiality our fault if we continue to treat it as a source of shame. I am not putting down anyone who chooses to keep their dx to themselves as I firmly believe it is a very individual decision (our personal circumstances can be as different as night and day). Just stating my thought process in deciding to be very open about bc.

Bilateral mx 9/7/11 with one step ns reconstruction. As of 11/21/11, 2cm met to upper left femur Dx 7/8/2011, IDC, Left, 4cm, Grade 1, 1/15 nodes, mets, ER+/PR+, HER2- Surgery 9/7/2011 Lymph node removal: Left; Mastectomy: Left, Right; Reconstruction (left); Reconstruction (right) Dx 11/2011, IDC, Left, 4cm, Stage IV, Grade 1, 1/15 nodes, mets, ER+/PR+, HER2- Hormonal Therapy 11/21/2011 Arimidex (anastrozole) Radiation Therapy 11/21/2011 Bone Hormonal Therapy 6/19/2014 Femara (letrozole) Hormonal Therapy Aromasin (exemestane)
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Jul 21, 2021 05:22PM FloridaRachel wrote:

I'm so glad I was looking around the forum today and saw this post! It made me come out of hiding to post here! I have kept my MBC a secret from everyone except my husband since September, 2019. Just before my metastatic diagnosis, we discovered our teenaged daughter had disordered eating and pretty severe depression. She ended up spending three weeks in a behavioral health hospital after a suicide attempt. We decided on Kadcyla as a treatment for me, and since I tolerated it really well and it didn't make my hair fall out, it wasn't obvious that I was in treatment.

My plan was to tell everyone, starting with my kids, once I felt my daughter was stable enough to hear the news and be able to process it in a healthy way, but I really didn't want to tell anyone. I went to a therapist who deals with issues surrounding cancer diagnoses to get advice on how to tell our children. He asked me what would be the worst thing about not telling people? The worst thing is probably that my husband doesn't have anyone to complain to. He won't complain to me! So I told him to pick a friend who doesn't live nearby, and tell that person, so he would have someone to talk to. He hasn't felt the need to do that yet.

I guess I'm a private person by nature and a bit of a control freak. I can't control anything about cancer, but I can control who knows about it! And I've always said I want to give cancer as little attention as possible. If everyone knows about my diagnosis, I'm worried that every discussion I have will be about cancer. (That's a bit of an exaggeration, I know.) I tend to lose my composure and tear up whenever someone is too sympathetic to me. The therapist said he has had other patients tell him they stopped going to church for the same reason - everyone at church is trying to be nice and telling you they'll pray for you. That will absolutely make me start crying, and I don't want to cry in church every Sunday.

And probably my biggest issue is that I know what people think when they hear "Stage IV Cancer." They think - you're dying of cancer. Well, I have a lot of living to do. I don't think of myself as a person who's dying of cancer. I'm living with a terrible disease. I guess I feel like once I tell people, I might as well have "Cancer Patient" tattooed on my forehead.

The day will come when I'll decide to tell people or when my treatment will dictate I have to tell. But that day isn't today. I am glad to find out I'm not the only weirdo who took a more private approach! I can't imagine there are many people who would handle an MBC diagnosis the same way I did, but it was the right decision for me and my family.

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Jul 21, 2021 11:12PM 2019whatayear wrote:

Thanks for sharing your story Florida :

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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Jul 21, 2021 11:52PM - edited Jul 21, 2021 11:55PM by Chicagoan

Great article! Hope research funding will increase and that soon 10 years survivors will no longer be outliers but "normal."

I did not tell many people the first two months of my diagnosis as I was wrapping my head around it- I felt teary when I did have to tell some people. Believe it or not, it actually annoyed me at first when people said they were praying for me. Now I am grateful for the prayers and I offer my prayers to other people dealing with cancer.

I am a pastor so I felt I wanted to be honest with my church as to why I was resigning right before Christmas-as a result, my health became very public and it was difficult because many people assumed I would be dead within six months and basically told me that. I received many well intentioned gifts like coloring books, afghans-I guess to fill my final six months, sitting at home alone, as I waited to die.

Here I am, almost 5 years later and I am very open about my cancer because it is part of who I am right now. By being open, I have been able to connect with other people who have cancer in my real life. I don't talk cancer much with friends who don't have it but it's nice to be able to do check ins with other pickle ball players who are also dealing with various types of cancer. We understand each other but there's no pity.

By being open about my cancer, other people feel free to be open about things they are dealing with or have dealt with in the past-like caring for a spouse through ALS, etc. I am not ashamed of having cancer or feel like I failed somehow. It's a card I've been dealt-everyone gets dealt some crappy cards-one of mine just turned out to be cancer. Cancer for me in a way has been a blessing-or perhaps I'll borrow a word I heard from a teenager on YouTube dealing with cancer-an awakening. I've learned to take such better care of myself these past 5 years-and like that teenager, I don't know if I would want to go back to being the person I was before cancer. I'd love to get rid of the cancer but it has taught me how to love and appreciate myself.

Dx 9/21/2016, IDC, Left, Stage IV, metastasized to bone, Grade 1, ER+/PR+, HER2- Radiation Therapy 9/26/2016 Hormonal Therapy 10/5/2016 Femara (letrozole) Targeted Therapy 10/26/2016 Ibrance (palbociclib)
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Jul 22, 2021 09:47AM - edited Jul 22, 2021 11:10AM by DivineMrsM

I'd read the article and didn't think it offered much new to what those of us with mbc already know. However, I appreciate that the author has a large national platform with which to better inform the general public, and maybe some of them are listening.

Revealing an mbc diagnosis is a mixed bag. When originally diagnosed in 2011, I let people know about the bc, but only family members were told it was metastatic and were asked to keep it private. Having to deal with everything surrounding mbc was a lot for me to take, and I was not going to spend energy addressing the reactions of others. Also, living in a small town, rumors become rampant and after awhile you don't know what's being said of you.

So after about 5 years, I found myself being more open to telling others about the mbc. Then a few years after that, I had progression, let some people know, had a bad year with a couple treatments and I started being treated like I was on death's door. It pissed me off. I confronted a couple people about it. I don't want to be known as thepoorwomanshehasdeadlycancer. Anyway, those who thought I was a goner two years ago see I'm still here.

No way do I feel any shame or embarrassment about mbc. Many, many people I know or am acquainted with who were healthy at the time I was dx 10 years ago have gotten cancer or some other disease and many have died. It is the luck of the draw. Yes, we can learn a lot as we live with the disease, although I wish I'd had the choice to take the course where you don't get mbc and still learn all the vitally important things!


found lump 12-22-10—ilc—er+/pr+/her2—stage iv bone mets—chemo~lumpectomy~radiation~arimidex—March 2019-ibrance/aromasin* —Sept 2019-verzenio* —March 2020-xeloda*
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Jul 22, 2021 09:51AM DivineMrsM wrote:

Chicagoan, I like how you say you and others with cancer understand each other but there’s no pity. That’s very powerful.


found lump 12-22-10—ilc—er+/pr+/her2—stage iv bone mets—chemo~lumpectomy~radiation~arimidex—March 2019-ibrance/aromasin* —Sept 2019-verzenio* —March 2020-xeloda*
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Jul 22, 2021 10:14AM Chicagoan wrote:

Thanks Divine. I too love seeing people who treated me like a goner-I smile and laugh to myself. "I'm Still Here" is one of my theme songs!

Dx 9/21/2016, IDC, Left, Stage IV, metastasized to bone, Grade 1, ER+/PR+, HER2- Radiation Therapy 9/26/2016 Hormonal Therapy 10/5/2016 Femara (letrozole) Targeted Therapy 10/26/2016 Ibrance (palbociclib)
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Jul 22, 2021 12:49PM moth wrote:

Divine, good point that the article isn't news to anyone with mbc but for people who don't know much, and people who only know the early breast cancer success stories it probably is news.

I'm a teller. I tell pretty much everyone.

I think it's good for people to know that some people live a long time. Most of us live a short time with the disease. It's part of people's learning that breast cancer can really vary and that some people die quickly and others don't, but there's still no cure. I don't really see the pity thing or maybe i just don't see it as negative? It's a horrible thing that happened to me - if people feel sorry that it's happened, that makes sense to me.

I'm glad she spoke out to get the issue of research funding front & center. The breast cancer that kills is not getting as much funding as it deserves. I think we poured a lot of money into prevention and early stage treatments (& likely ended up over treating lots of very early stage women who didn't need treatment). Now it's time to focus on advanced & metastatic disease.

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 2/13/2018 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 3/18/2020 Tecentriq (atezolizumab) Chemotherapy 11/25/2020 Abraxane (albumin-bound or nab-paclitaxel) Radiation Therapy 12/8/2020 External Dx 12/9/2020, IDC, Right, Stage IV, metastasized to lungs, Grade 3, ER+/PR-, HER2- (IHC) Hormonal Therapy 12/15/2020 Femara (letrozole) Dx 1/28/2021, IDC, Left, Stage IV, metastasized to bone Radiation Therapy 3/2/2021 External: Bone
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Jul 22, 2021 02:24PM - edited Jul 22, 2021 03:33PM by exbrnxgrl

As noted, I'm a teller too. One thing I really wanted to do was to shut down any rumors or speculation and gossip. My school district and school community are small and caring but rumors and half truths can spread quickly . I made it very clear to almost everyone that I was more than willing to be honest about my bc. Additionally I also asked that if they heard anything about me or my health that didn't sound quite right that I would be happy to set them straight. I put an end to one or two rumors early on and that was the end of it. I wanted to control the narrative and this worked for me.

I know that everyone has different circumstances and we also have different comfort levels. To those worried about rumors and gossip, telling the truth and inviting people to come to you directly can nip that problem in the bud. You don't have to divulge every intimate detail but when the truth is out there, there's no need to fill in the blanks with innuendo and falsehoods. As for looks of pity or distress? Not my problem! I was also lucky enough to rarely encounter that. BTW, I was dx'ed close to the beginning of the school year. By the next school year my bc had been forgotten by most of the general school population (except for friends). When I announced that I was retiring to class parents this past school year, I did mention living with mbc for 10 years. It had become such a non-issue that they were very surprised. Quite a few did ask questions and I viewed it as an opportunity to educate them. What else would a teacher do 😂 ?

Again, a very individual decision based on individual circumstances.

Bilateral mx 9/7/11 with one step ns reconstruction. As of 11/21/11, 2cm met to upper left femur Dx 7/8/2011, IDC, Left, 4cm, Grade 1, 1/15 nodes, mets, ER+/PR+, HER2- Surgery 9/7/2011 Lymph node removal: Left; Mastectomy: Left, Right; Reconstruction (left); Reconstruction (right) Dx 11/2011, IDC, Left, 4cm, Stage IV, Grade 1, 1/15 nodes, mets, ER+/PR+, HER2- Hormonal Therapy 11/21/2011 Arimidex (anastrozole) Radiation Therapy 11/21/2011 Bone Hormonal Therapy 6/19/2014 Femara (letrozole) Hormonal Therapy Aromasin (exemestane)
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Jul 22, 2021 06:04PM - edited Jul 22, 2021 06:06PM by DivineMrsM

The year I was diagnosed, my son was a senior in high school. He was graduating at the top of his class and there was a whirlwind of senior year banquets, breakfasts and concerts to celebrate. He received a sizable scholarship at one ceremony that floored us. During this time, I was having chemotherapy. I lost all my hair, wore a wig, lost weight, experienced severe anxiety. Chemo gave me neuropathy in my hands and feet; I had to have dh take over the bill paying because I could not hold a pen to write checks. In the meantime, I was taking my son on day trips to colleges so he could decide where he wanted to attend. We threw him a wonderful, large graduation party on a beautiful summer day. My stepson and his wife came with our newborn grandson. A month after the last chemo, I had lumpectomy surgery and then a few weeks later had to go back in for a second surgery because when the surgeon sliced the breast open the first time, she did not get good margins. A month later, I began 33 rounds of radiation which left me extremely exhausted and burnt my breast to a crisp. I continued to work part time. While this was going on, we moved our son an hour away to his college dorm. He is my only child. For many parents this is a hard transition. I found it especially difficult, and not just for myself. Imagine how I felt that my son, with whom I share a close relationship, had to go through all the celebrations of his senior year while knowing his mom had just been diagnosed with metastatic breast cancer; then, three months later, leave for college and the security of home with a big question mark looming about how long his mom had to live. I haven't even mentioned how hard it all was for dh.

I felt so much sadness. I felt so much joy. The last thing in the world I wanted to do during this emotional roller coaster ride of a year was spend my time and fragile energy fielding questions from people about metastatic breast cancer.

found lump 12-22-10—ilc—er+/pr+/her2—stage iv bone mets—chemo~lumpectomy~radiation~arimidex—March 2019-ibrance/aromasin* —Sept 2019-verzenio* —March 2020-xeloda*
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Jul 22, 2021 06:36PM exbrnxgrl wrote:

divine,

An excellent illustration of why individual circumstances often dictate when/who we tell about our bc. My daughters were both adults and I wasn’t going to be having chemo so no se’s to deal with when I was dx’ed. Even with the dreadful pneumothorax incident, by the time I returned to work 3 1/2 months later, I felt almost normal. I quickly realized how little folks actually understood about bc. Oh, heck, let’s be honest, I understood very little about bc at that point 😉. Anyway because of the circumstances and my natural inclination to educate, I became the de facto go to person for bc info in my little school district.

If my daughters had been younger, if I worked with people who I knew would be gossipy or cause me more stress in any way then I might have made different choices. Sadly, my school had already lost several parents to breast cancer so I knew that they would be a very supportive community. Even for the same person, ones choice to divulge or not may differ depending on their current life circumstances.

Bilateral mx 9/7/11 with one step ns reconstruction. As of 11/21/11, 2cm met to upper left femur Dx 7/8/2011, IDC, Left, 4cm, Grade 1, 1/15 nodes, mets, ER+/PR+, HER2- Surgery 9/7/2011 Lymph node removal: Left; Mastectomy: Left, Right; Reconstruction (left); Reconstruction (right) Dx 11/2011, IDC, Left, 4cm, Stage IV, Grade 1, 1/15 nodes, mets, ER+/PR+, HER2- Hormonal Therapy 11/21/2011 Arimidex (anastrozole) Radiation Therapy 11/21/2011 Bone Hormonal Therapy 6/19/2014 Femara (letrozole) Hormonal Therapy Aromasin (exemestane)
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Jul 22, 2021 07:14PM - edited Jul 22, 2021 09:40PM by Del14

There are many things about having breast cancer that we are never told or it is brushed over quickly then forgotten.

One of those dirty little secrets is lymphedema. There is a whole thread on that and pretty well covers anything one would need to know with a lot of knowledgeable ladies to help. None of them are bashful about talking about it. (Sadly not many drs or nurses know much about it and qualified therapists are hard to find)

Another seldom talked about thing is secondary angioscarcoma.

I was dx w/IDC in 2004. Found by mammogram. Confirmed by biopsy. Lumpectomy clear margins, stage 1 grade 3, no nodes, 36 rads plus boosts, 5 years Arimidex. Not a walk in the park but got through it with 7 or 8 punch biopsies for suspicious spots. All biopsies came back inflammation from radiation and lymphedema & fat necrosis. I had cellulitis 6x in 10 years. I told my family and a few friends and answered questions if asked.

10 years later in 2014 I found a tiny red inflamed thing on the scar where the boosts were done, that looked similar to a pimple ( no white head). Biopsy & dx as secondary angioscarcoma. Wide excision lumpectomy with clear margins.

One year almost to the day another similar spot but brown not red. Biopsy showed sec angio. Wide excision lumpectomy immediately to get it out quickly. Clear margins but CLOSE.

My husband and I took a few days to pray, talk to drs and decided on a mastectomy to remove as much radiated tissue as possible. I had an LD flap to cover the huge area and a split skin graft to cover the area that went necrotic.

LD flaps are another issue that is not addressed truthfully, but that is another issue for another time.

Sec angio is different than primary angio. Secondary Angioscarcoma is caused by radiation treatment. It is seldom if ever mentioned by drs because " If we told women about that too many would refuse radiation and die of cancer" ( direct quote from a dr)

I am not a MBC patient because sec angio is not a recurrence of breast cancer and is not in fact breast cancer. It is cancer in blood vessels CAUSED BY RADIATION treatment.

It rarely goes to nodes. If it spreads it is most likely to be the lungs. A cough can send me to "what if" in a hurry. I check myself for rashes and lesions often. I'm down to about once a week instead of 3x a day!

So I freely talk to anyone and have told several people about it because they asked.

The details are grisley and scares the bjeebees out of cancer patients. I have not even had the privilege of posting on the stage 4 threads because it is not breast cancer, besides as far as I know I am the only one on here that has had it. Only 1/2 of 1% ever get it, but as more and more breast cancers are being treated with lumpectomy and radiation more cases are being reported.

The best treatment is surgery. Chemo has been tried as well as more rads with very little good results. Most do not make 5 years, because most drs give antibiotics, topical creams, etc before doing a biopsy. That is how little most drs know about it.

I was very fortunate to have a surgeon that had dealt with it before and even he said that not much is known about it. He had treated 4 or 5 cases in 40 years and all but 2 including me were sent to him by other doctors.

I am 17 years NED from IDC and 6 years NED from the second dx of sec angio. I am in touch with a lady in Australia that is 14 years out and doing well so there are survivors out here.

Most info on line is old. In my opinion very little money is put into research for this horrible result of a treatment that you had to save your life.

Yes I've been through all the emotions and then some. I still take meds for anxiety but I certainly do talk about it if the occasion arrives.

WOMEN AND MEN SHOULD BE TOLD ABOUT THIS.

If you get anything new that does not go away in a couple of weeks INSIST on a biopsy. Hopefully it is nothing but if it is sec angio a mastectomy as soon as possible may save your life!

Still.......

remember it is extremely rare.

One thing they need to study is that the standard radiation treatments are not for everyone. Some study and changes have been made but not near enough.

I don't make a nuisance of myself but I don't hesitate to explain it if someone is looking for answers or asking questions about a lesion.

I get upset when I hear of a woman that has a discoloration, a bruise look, or lesion that in spite of antibiotics, cortisone creams etc etc it is not getting better, but getting worse, and their dr does not recommend a biopsy.

I've learned the hard way more than I ever wanted to know.

JO-5

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