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Topic: Please share suggestions for any and all things related to BCO

Forum: Comments, Suggestions, Feature Requests —

Request new or improved features, report bugs, & view upcoming changes. Directly share constructive feedback at comments@breastcancer.org.

Posted on: Jun 30, 2020 11:46AM - edited Jun 30, 2020 12:22PM by Moderators

Moderators wrote:

Suggest Forum names, forum organization, content you'd like to have addressed, any or all things that could be helpful to us Mods, or the BCO Team. Forum and Topic names are easy for us Mods to change, so can be fluid. Meaning, if the consensus changes, we can make some edits.

Thank you!

To send a Private Message to the Mods: community.breastcancer.org/mem...
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Jul 1, 2020 08:19PM Beesie wrote:

"Sex After Breast Cancer: Let's Get Real (replace sex and relationship matters)"

Since about 1/2 the threads in this forum are about relationships and not sex, I think the current forum title is better. It's another one where the name change narrows the scope.

"Caring for Someone with Breast cancer (replace caregivers)

-Caring for Someone with Stage 4 or Mets (replace family and caregivers of stage 4)"

I've seen lots of posts from family members and friends who are worried or have questions, but they don't have the responsibility of "caring for" someone with breast cancer. They "care about" someone with breast cancer. So here again I think the current names, "For Caregivers, Family, Friends and Supporters" and "For Family & Caregivers of Loved Ones With a STAGE IV Diagnosis", are better because they open the forum to anyone who is concerned about a breast cancer patient.


“No power so effectually robs the mind of all its powers of acting and reasoning as fear.” Edmund Burke
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Jul 2, 2020 03:12AM MelissaDallas wrote:

Get rid of the “Waiting for Test Results” forum in “Not Diagnosed But Concerned”. When that forum got added all the new folks who already posted in “Not Diagnosed But Worried” decided they should start additional new thread(s) after their mammograms, biopsie, etc. instead of continuing with their results in their original thread. If they are “Not Diagnosed but Worried” it is already pretty much a given that they are waiting on test results.

LCIS, extensive sclerosing adenosis, TAH/BSO & partial omentectomy for mucinous borderline ovarian tumor.
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Jul 2, 2020 02:58PM buttonsmachine wrote:

I have a few comments regarding the potential change from "Living Without Reconstruction After a Mastectomy" to "Aesthetic Flat Closure." I am only half-flat, so take my opinion for what it's worth.

I totally support women who choose aesthetic flat closure, and I am glad this option is gaining the recognition it deserves. However, to me "aesthetic flat closure" is a very specific kind of surgery choice that does not describe or include all the women who are living "flat."

Many women who are flat (or half-flat) have not had aesthetic closure, and are not flat by choice because of active disease or other health problems.

In the end, whether we are flat by choice, or not by choice, I think we can still benefit from our shared experiences on the forums. So maybe a merging of these two titles would best capture the different kinds of "flat" out there?

Diagnosed at 32. Local recurrences in the skin, and now dealing with MBC. Dx 8/2016, IDC, Right, Stage IA, Grade 3, 0/2 nodes, ER+/PR+, HER2- Dx 10/2017, IDC, Right, Grade 3, 2/12 nodes, ER+/PR+, HER2- Dx 8/2020, IDC, Stage IV, metastasized to bone/other, Grade 3, ER+/PR+, HER2-
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Jul 2, 2020 03:38PM wrenn wrote:

I agree with Buttonsmachine. "Aesthetic Flat Closure" is ONE type of surgery. I had unaesthetic or regular old shitty closure so I wouldn't belong. I think "flat" has to be a broader topic.

Metaplastic IDC Triple negative...Tumour is 1.5cm. BMX Aug. 16th. Chemo cancelled after one dose due to complications. Dx 7/25/2013, IDC, Left, 1cm, Stage IA, Grade 3, 0/6 nodes, ER-/PR-, HER2- Surgery 8/16/2013 Lymph node removal: Left, Sentinel, Underarm/Axillary; Mastectomy: Left, Right
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Jul 2, 2020 03:39PM JavaJana wrote:

I agree the title changes are only indicated to simplify or clarify a forum. No need for long drawn out, or cute nonsense. Bessie, MelissaDallas, wrenn, ShetlandPony, SummerAngel gave excellent title suggestions.

Xgeva 9/2/2020. History: 2 Borderline Serous Ovarian Carcinoma TAH/BSO, 0/15 nodes - 2/18/20. Benign Papilloma/ADH Left breast, excisional biopsy 10/11/2016 Dx 10/1/2019, IDC, Left, <1cm, Stage IA, Grade 2, 0/1 nodes, ER+/PR+, HER2+ (IHC) Dx 10/23/2019, LCIS/DCIS, Right, 0/1 nodes Surgery 11/19/2019 Lymph node removal: Sentinel; Mastectomy: Left, Right Dx 3/25/2020, IDC, Stage IV, metastasized to bone, 0/2 nodes Chemotherapy 4/8/2020 Taxotere (docetaxel) Targeted Therapy 4/8/2020 Herceptin (trastuzumab) Targeted Therapy 4/8/2020 Perjeta (pertuzumab) Hormonal Therapy 8/13/2020 Femara (letrozole)
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Jul 2, 2020 09:11PM kathindc wrote:

If nothing else, I think the information MT1 has provided needs to be incorporated into BCO's information page regarding mastectomies and living flat.

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Jul 3, 2020 09:50AM buttonsmachine wrote:

Totally agree! I'm glad that "aesthetic flat closure" is now recognized enough by the medical community to warrant getting an official name. That really needed to happen.

Diagnosed at 32. Local recurrences in the skin, and now dealing with MBC. Dx 8/2016, IDC, Right, Stage IA, Grade 3, 0/2 nodes, ER+/PR+, HER2- Dx 10/2017, IDC, Right, Grade 3, 2/12 nodes, ER+/PR+, HER2- Dx 8/2020, IDC, Stage IV, metastasized to bone/other, Grade 3, ER+/PR+, HER2-
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Jul 3, 2020 11:36AM wrenn wrote:

Sad that "aesthetic flat closure" had to become a thing. That closures were not always aesthetic is shameful.

Metaplastic IDC Triple negative...Tumour is 1.5cm. BMX Aug. 16th. Chemo cancelled after one dose due to complications. Dx 7/25/2013, IDC, Left, 1cm, Stage IA, Grade 3, 0/6 nodes, ER-/PR-, HER2- Surgery 8/16/2013 Lymph node removal: Left, Sentinel, Underarm/Axillary; Mastectomy: Left, Right
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Jul 3, 2020 04:37PM reneeCA wrote:

Let's change it! As someone who went flat after finding what was appealing online and not in a surgeon's office or website (curved incisions along the pectoral muscles) , I think Aesthetic Flat Closure as new language in the NAtional Cancer Institute is hugely important. It will give patients and surgeons much needed language. It's so crappy to have to ask for "no reconstruction" - a choice literally defined by a rejection of mound reconstruction as MT1 pointed out. As for the women whose heath would be compromised by removing excess tissue on their chest (not due to delayed recon) at time of MX, I would think requesting the best "aesthetic flat closure" result possible would still be a desire. Indeed many women choose flat because it is the choice with lowest risk and easiest recovery. I have NEVER heard of anyone requesting to be left with bumpy rolls of skin on their chest. That seems to be from poor surgical skills, or the surgeon deciding "no recon" means the patient will change her mind (completely offensive). Moderators, aesthetic flat closure is on the menu:)

Dx 10/27/2016, DCIS, Left, 6cm+, Stage 0, Grade 3, 0/1 nodes, ER+/PR+ Surgery 11/22/2016 Lymph node removal: Sentinel; Mastectomy: Left, Right; Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant
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Jul 4, 2020 05:47AM - edited Jul 4, 2020 08:14AM by Abelian

I don't agree with changing the no reconstruction forum to be named "Aesthetic Flat Closure". Last year, when I was looking for answers after my diagnoses, I was happy to find that forum. I would never have found it with the suggested name.

The forum is not just about the kind of surgery but for life after that, finding the right clothing, prosthesis,swim suits etc. To me, this name change really narrows the focus of the forum. Will we then have another forum for women who are living without reconstruction but haven't had the flat closure surgery?

Dx 1/18/2019, IDC: Tubular, Right, 1cm, Stage IA, Grade 1, 0/4 nodes, ER+/PR+, HER2- Surgery 2/24/2019 Mastectomy: Right; Prophylactic mastectomy: Left
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Jul 4, 2020 09:20AM buttonsmachine wrote:

I agree with Abelian that this is a tricky issue.

I want to emphasize that some of us are not even candidates for "aesthetic flat closure." Some of us just had to be patched up in any way we could. Some people are very concave because part of the chest wall had to be removed, some people had skin grafts, and some people have other lumps or bumps due to infection or any number of other reasons when our diagnoses became more complicated.

I totally support the recognition and increased visibility of "aesthetic flat closure" for people who chose and are candidates for that. But does that really mean that those of us with unaesthetic flat closure are not allowed to participate on that forum anymore? I don't think that makes sense.

In my opinion, it would be best to start an "aesthetic flat closure" specific forum for those who are interested in that as a reconstructive choice.

Diagnosed at 32. Local recurrences in the skin, and now dealing with MBC. Dx 8/2016, IDC, Right, Stage IA, Grade 3, 0/2 nodes, ER+/PR+, HER2- Dx 10/2017, IDC, Right, Grade 3, 2/12 nodes, ER+/PR+, HER2- Dx 8/2020, IDC, Stage IV, metastasized to bone/other, Grade 3, ER+/PR+, HER2-
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Jul 4, 2020 09:36AM wrenn wrote:

I agree with everything Buttonsmachine said above.

Metaplastic IDC Triple negative...Tumour is 1.5cm. BMX Aug. 16th. Chemo cancelled after one dose due to complications. Dx 7/25/2013, IDC, Left, 1cm, Stage IA, Grade 3, 0/6 nodes, ER-/PR-, HER2- Surgery 8/16/2013 Lymph node removal: Left, Sentinel, Underarm/Axillary; Mastectomy: Left, Right
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Jul 4, 2020 11:41AM - edited Jul 4, 2020 11:44AM by Beesie

The Breast Reconstruction forum is one forum for all types of reconstruction, and for discussion about all issues related to reconstruction. The Living Without Reconstruction After A Mastectomy forum has up to now been the same thing for those who have had a MX with no breast replacement reconstruction, i.e. a place to discuss any and all issues related to this surgical option and living flat. Personally I think this board already has too many forums and I don't see the benefit in breaking the Living Without Reconstruction forum into two.

Why not just a pinned thread at the top of the forum for discussion of Aesthetic Flat Closure? And perhaps a reference to that option in the description/option under the main forum name. The subject will get more attention if it is in a forum that everyone going flat participates in. And perhaps the forum name should be changed to "Living Flat After A Mastectomy", in recognition that aesthetic flat closure is a type of reconstruction.

“No power so effectually robs the mind of all its powers of acting and reasoning as fear.” Edmund Burke
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Jul 4, 2020 12:25PM - edited Jul 4, 2020 12:37PM by buttonsmachine

Just to clarify, I agree that it would be better if the "Living Without Reconstruction After a Mastectomy" forum is not broken in two, and I do advocate for all of us to stay on the same forum since we can all benefit from each other's experiences.

As Beesie suggested, I think adding something about "Aesthetic Flat Closure" under the main forum heading would be a great addition, and the title "Living Flat After a Mastectomy" is a great choice which is also inclusive for all of us. I do not think the entire "Living Without Reconstruction After a Mastectomy" section of BCO should be renamed "Aesthetic Flat Closure" because that needlessly excludes people who did not have aesthetic flat closure.

The "Living Without Reconstruction After a Mastectomy" forum discusses all aspects of living life flat and does not need to be limited to people who had one kind of surgery. That being said, if people want a place to exclusively discuss the pros and cons of "Aesthetic Flat Closure" as a surgery and reconstructive choice that could be an option too.

Diagnosed at 32. Local recurrences in the skin, and now dealing with MBC. Dx 8/2016, IDC, Right, Stage IA, Grade 3, 0/2 nodes, ER+/PR+, HER2- Dx 10/2017, IDC, Right, Grade 3, 2/12 nodes, ER+/PR+, HER2- Dx 8/2020, IDC, Stage IV, metastasized to bone/other, Grade 3, ER+/PR+, HER2-
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Jul 6, 2020 09:10AM MT1 wrote:

We now have a new word for 'flat' and an NCI dictionary reference to boot.

The word, 'reconstruction', as we now know it, implies 'breast mound' surgery. Prior to this moment, choosing 'flat' could easily be confused with 'skin sparing mastectomy'. But now, with the NCI's clarity, it also includes, 'aesthetic flat closure'. At one point, no one knew what a Diep Flap surgery was, but we learned about it and incorporated the idea into our lexicon, just as we are doing this this new term.

Those who choose 'flat', are NOT choosing skin sparing procedures, nor breast mound surgeries, but they are asking for an aesthetically pleasing appearance. Choosing 'aesthetic flat closure' has nothing to do with whether you have chosen unilateral of bilateral 'aesthetic flat closure'. Under the WHCRA, anyone who needs 'reconstruction' can choose to have surgery to their contralateral breast for reasons of symmetry, or not. But when flat is not acknowledged as 'reconstruction', skin sparing surgeries, paternalism and lack of skill, can and does run rampant.

My insurance refused to pay for my surgery because they deemed my contralateral choice of symmetry unnecessary. 20K

People who choose flat need doctors and insurance companies to up their game, gain skills and loose their bias to breast mound surgery. Once this occurs, we can discuss financial parity for those doctors who work to increase their skill and listen to the needs of the women who choose flat closure.

I do not want to define my choice as 'no reconstruction', because my body was most certainly 'reconstructed'. Names are important. Definition is important.

I do understand that not all people who choose 'aesthetic flat closure', 'go flat'. We have options! We can wear any size prosthetic we want. We can forgo their use at home. We can 'go flat' on the daily. 'Going Flat' is a colloquialism.


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Jul 6, 2020 10:20AM - edited Jul 6, 2020 10:30AM by buttonsmachine

MT1, I understand and support what you are saying.

That being said, I still feel that renaming the entire forum "Aesthetic Flat Closure" needlessly excludes the many women who, for whatever reason, did not have aesthetic flat closure.

It might help if the Mods consult knowlegable doctors to help develop a working description that applies to everyone. Just my two cents.

Diagnosed at 32. Local recurrences in the skin, and now dealing with MBC. Dx 8/2016, IDC, Right, Stage IA, Grade 3, 0/2 nodes, ER+/PR+, HER2- Dx 10/2017, IDC, Right, Grade 3, 2/12 nodes, ER+/PR+, HER2- Dx 8/2020, IDC, Stage IV, metastasized to bone/other, Grade 3, ER+/PR+, HER2-
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Jul 6, 2020 11:27AM Beesie wrote:

"Prior to this moment, choosing 'flat' could easily be confused with 'skin sparing mastectomy'."

Uh, no. A skin sparing mastectomy leaves as much of the breast skin as possible, specifically so that a "breast", be it implant or transferred body fat, can be created to fill the skin. A skin sparing mastectomy is generally contraindicated for those who are not having reconstruction. I realize that there are cases where a skin-sparing mastectomy may be done to optimize the amount of skin left to provide a better aesthetic result when going flat, but that is not the usual definition or role of a skin sparing mastectomy.

It seems that there are two different points being made. MT1, I don't think anyone disagrees about the importance of having the NCI identify "aesthetic flat closure" as a surgical procedure. Until your posts, I was not aware of the term or that it is a specific surgical procedure, and as someone who has had reconstruction but often posts to newbies who are struggling with their decision on whether or not to have a MX and if so, whether or not to have reconstruction, this is important information that I will add into my posts going forward.

But the point being made by many others who've posted here is that "aesthetic flat closure" is a surgical procedure and is not a term that represents the entire experience and all the issues related to living flat. Up until now, the Living Without Reconstruction has represented this broader experience. Similarly, the Reconstruction Forum represents all types of reconstruction and all issues related to living with reconstruction. It's not called the DIEP Forum.

Is there a name that you suggest to replace "Living Without Reconstruction After a Mastectomy"? Your point about not defining those who choose to go flat as having "no reconstruction" makes sense. A few posts up in this thread I suggested "Living Flat After A Mastectomy" but it sounds as though you don't like the word "flat" ("'Going Flat' is a colloquialism."). So what's better to represent the full experience, from the decision-making process through the surgery to living one's life with one or both sides flat?

“No power so effectually robs the mind of all its powers of acting and reasoning as fear.” Edmund Burke
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Jul 6, 2020 11:41AM wrenn wrote:

If the topic title is "Aesthetic Flat Closure" I no longer fit in.

Metaplastic IDC Triple negative...Tumour is 1.5cm. BMX Aug. 16th. Chemo cancelled after one dose due to complications. Dx 7/25/2013, IDC, Left, 1cm, Stage IA, Grade 3, 0/6 nodes, ER-/PR-, HER2- Surgery 8/16/2013 Lymph node removal: Left, Sentinel, Underarm/Axillary; Mastectomy: Left, Right
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Jul 6, 2020 12:18PM Beesy_The_Other_One wrote:

Wrenn, you and me both!

What about "Cosmetic Flat Closure"? In a college journalism class I was taught that newspapers do not use vocabulary above a six grade level (sad, I know), and "aesthetic" qualifies. MT1, I do understand your position but I think if you want women to investigate all their options, the name of the forum matters. As a side note, it is unconscionable that you had to pay out of pocket to achieve the symmetry that you desired. I had lived with 1 ½ breasts for almost twenty years, but if one was going, the half was going too!

I can't tell you the number of women who've told me, "I did not realize that I could choose not to have reconstruction." I think the real point here is to present the options so women investigating can weigh them all and feel they made an educated decision, the best for them.

While I had not heard the term "aesthetic flat closure" prior to this discussion, that is exactly what I wanted. I brought photos of what I wanted (let's be honest, they make women into men these days, so it can be done). I got a PS to close, and my surgeon, who by this point was like a friend because he'd done my Phyllodes surgery in 1997 . . . he said he chose the best PS MD Anderson has. Either the PS did not believe me that I would not change my mind or doesn't know what an "aesthetic flat closure" is when she sees a photo of it. I've come to wonder whether an "aesthetic flat closure" can be accomplished in one surgery, which is one of the reasons I chose it in the first place—to avoid multiple surgeries.

1997: Phyllodes, R breast. 2018: IDC, L breast. TCHP, BMX, Radiation, Nerlynx. Dx 8/20/2018, IDC, Left, Grade 3, 0/1 nodes, ER-/PR-, HER2+ (IHC)
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Jul 7, 2020 04:07AM MT1 wrote:

Without a name and clear descriptive, asking for flat can be interpreted by doctors in whatever way their biases and skill sets allow.

How many times have I heard a woman say, I asked for flat, only to see they were left with skin sparing mastectomy. How many times have one of us heard a doctor say, ‘just in case you change your mind’, as if the doctor knows better than the patient. I have heard it TOO MANY times. So much so, that I believe this to be the #metoo of the breast cancer world. I know of no other surgery where a patient wakes to an outcome they did not request.

Drop the word aesthetic, if that alienates those whose results are not in keeping with the proposed board name. But having a definition points to preferred outcomes, which cannot be denied by insurance companies. Having a definition and photographs makes sure that doctors/insurance companies have clarity and can be held responsible. Having a definition puts the power of this choice into the patients hands, where it should be.

Flat closure -is- reconstruction.

I love the word flat, I use it to describe my results. It’s also part of the new NCI definition, and it will continue to be used interchangeably, I bet. My comment about it being a colloquialism, is that, without a clear definition, the interpretation of the outcome is dependent on the person hearing it.

Also, not all people who choose ‘no reconstruction’, go flat’, many wear breast forms.

Perhaps Aesthetic Flat Closure should be a major thread within the Reconstruction board and Going Flat should be separate from it. Maybe we need a forum for those who have suffered flat denial or been forced to accept an inability to reconstruct their bodies.


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Jul 7, 2020 08:20AM Abelian wrote:

i think we have all made really good points. However, I still don't see why the forum name needs to be changed to something that most people are not familiar with. Changing the forum name isn't going to magically force all doctors to change their surgical methods.

I think the point here is to educate and inform patients that they have this option available to them and they can then ensure that their surgeon understands their desires. To that end, a thread that stays pinned at the top would be much more helpful.




Dx 1/18/2019, IDC: Tubular, Right, 1cm, Stage IA, Grade 1, 0/4 nodes, ER+/PR+, HER2- Surgery 2/24/2019 Mastectomy: Right; Prophylactic mastectomy: Left
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Jul 7, 2020 08:33AM - edited Jul 7, 2020 02:41PM by wrenn

MT1 I don't think anyone has objected to the name "aesthetic closure" but they are saying that it doesn't cover all of the areas people are seeking information on when it comes to not having reconstruction.

It is a type of surgery.

This topic seems to be going in circles.

Metaplastic IDC Triple negative...Tumour is 1.5cm. BMX Aug. 16th. Chemo cancelled after one dose due to complications. Dx 7/25/2013, IDC, Left, 1cm, Stage IA, Grade 3, 0/6 nodes, ER-/PR-, HER2- Surgery 8/16/2013 Lymph node removal: Left, Sentinel, Underarm/Axillary; Mastectomy: Left, Right
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Jul 7, 2020 09:24AM Beesy_The_Other_One wrote:

I wear prosthetics every day and even in my bra look just as I did before--it's remarkable, honestly. I am not in denial about the real state of my body but want clothes to fit as they did and don't find wearing forms burdensome in the least. I did not get the aesthetic flat closure I requested and was planning to investigate going to a "makeover your body type of PS" to get it fixed because I know it can be (now that enough time has passed since radiation). Right when I could do it, the world as we knew it came to a grinding halt due to a microscopic virus. I really wanted to avoid that second surgery.

This conversation has been educational for me, though, and while some here may feel frustrated over it, I searched "aesthetic flat closure," and boy, I learned a lot. I showed my PS photos of an AFC, but did not use the term. Would it have helped? I am not entirely certain.

MT1, I think you came up with a great name for the thread in question: Flat closure -is- reconstruction.



1997: Phyllodes, R breast. 2018: IDC, L breast. TCHP, BMX, Radiation, Nerlynx. Dx 8/20/2018, IDC, Left, Grade 3, 0/1 nodes, ER-/PR-, HER2+ (IHC)
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Jul 12, 2020 01:52PM buttonsmachine wrote:

Hi Mods, I need some help with fact-checking on BCO's Ibrance page. Also, I would really appreciate it if any experienced and knowledgeable community members could weigh in on this too.

This is my question: Can Ibrance cause neuropathy or not?

According to BCO's Ibrance informational page, neuropathy is listed as a common side effect. https://www.breastcancer.org/treatment/targeted_therapies/ibrance

However, the labeling page from Pfizer, which is cited on BCO, does not list neuropathy as a side effect. http://labeling.pfizer.com/ShowLabeling.aspx?id=2191

My MO wants me to start Ibrance, but if it causes neuropathy I'd rather take a different CDK4/6 inhibitor. I have already mentioned this to my MO, who says that Ibrance does not cause neuropathy. (However, my MO did concede that many patients who take Ibrance already have neuropathy due to other prior treatments, so this could possibly contribute to a lack of clarity on this issue.)

So what is the real situation here? What do the drug companies say? What do patients say? It is very important to me to avoid drugs that cause neuropathy from a quality of life perspective. I would really appreciate some clarity on this.

Thank you everyone!

Diagnosed at 32. Local recurrences in the skin, and now dealing with MBC. Dx 8/2016, IDC, Right, Stage IA, Grade 3, 0/2 nodes, ER+/PR+, HER2- Dx 10/2017, IDC, Right, Grade 3, 2/12 nodes, ER+/PR+, HER2- Dx 8/2020, IDC, Stage IV, metastasized to bone/other, Grade 3, ER+/PR+, HER2-
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Jul 12, 2020 02:28PM Moderators wrote:

Dear buttonsmachine,

We have passed your question along to our editorial team for guidance.

The Mods

To send a Private Message to the Mods: community.breastcancer.org/mem...
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Jul 14, 2020 07:07PM buttonsmachine wrote:

Thank you Mods, I really appreciate it. I saw that you replied to the other thread I started also.

Diagnosed at 32. Local recurrences in the skin, and now dealing with MBC. Dx 8/2016, IDC, Right, Stage IA, Grade 3, 0/2 nodes, ER+/PR+, HER2- Dx 10/2017, IDC, Right, Grade 3, 2/12 nodes, ER+/PR+, HER2- Dx 8/2020, IDC, Stage IV, metastasized to bone/other, Grade 3, ER+/PR+, HER2-

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