A Reflection on Self Advocacy for Young Survivors

This is a very short recap of stirred thoughts and feelings after talking to Miriam last week about her amazing self advocacy as a young breast cancer survivor with complicated hormonal needs. 

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Links:

The Facebook group for Flatties that I mentioned is here: https://www.facebook.com/groups/1445398828930324

Transcript:

Welcome back. Today, I'm just going to be recapping some of the topics that came up in the last interview, last week's podcast episode with my friend, Miriam Janove. Miriam is a young breast cancer survivor, just three and a half years out from her diagnosis. And she had a lot to say about a lot of subjects that are common for young survivors.

The first one that came up was the idea of over diagnosis and over treatment for young survivors. As she had stated, she got a second opinion, not because of the concern over whether she was being over treated, but because she needed a surgeon that really knew how to do her surgery, but she ended up with a new oncology team who ended up treating her very differently than what her first oncology team told her they would. And that was because of her age. She was in her 30s. And it was pretty clear that her first oncology team had a bias that said that young survivors need chemo regardless of whether they have an oncotype test that says that they are low risk or high risk.

Her second team of oncology professionals had a very different take and they really relied on her oncotyping to determine whether she would have chemo. And like so many of my guests, unexpectedly, she did not have chemo. It's so funny to me that I keep having guests that I assume have had chemo because you always assume folks in the breast cancer community, if you know them from this place--you assume it's pretty likely that they've had chemo, but it turns out that only, I think one of my guests so far has ended up having chemo.

Some of them turned down chemo and others were told they didn't have to have chemo. So Miriam was one that was told very clearly that she was not even being asked to take chemo. So pretty rare, I think classically for young survivors, but more and more we are seeing people who are, Healthcare professionals relying on the oncotyping test to see whether or not they really need it.

And so she was not overtreated. She was not given chemo when she didn't need it. Of course, we don't know. She's only three and a half years out. As she said, she's still, you know, somewhat at risk as we all are for recurrence or metastasis, regardless. But really nice that she didn't have to go through that particular hellish part of the breast cancer experience.

Thank you. The other part of her young survivor story that came out was her desire to be around, um, multi generational people. So she wanted to be back with her parents. She wanted to be around younger children. Kind of a revisiting of her values and really placing family and friends and children, the children of her friends, over her career as a big priority. So that was a theme that I think is really very common among young survivors. We, a lot of us, think differently after breast cancer about what our ambitions really are serving and where our ambitions really lie. And I think Miriam's a really good example of that.

A big part of Miriam's story that we didn't talk about because we didn't have time is her history of gynecological problems of hormone imbalance and dysfunction around her menstrual cycles. And she did refer to the fact that she had lost her ovaries. And I wanted to clarify because I think people probably wondered after hearing the last interview that she Miriam was not asked to give up her ovaries because of being treated for breast cancer specifically.

She was asked to give up her hormone treatment, which she had had, pretty much her whole adult life because of menstrual dysfunction and hormone imbalance. And so she was on estrogen and progesterone, or otherwise known as birth control, not for the sake of birth control, but for the sake of managing her very difficult menstrual symptoms and after breast cancer, folks who are dependent on hormone treatment, hormone therapy for those kinds of symptoms have no choice but to give up their ovaries if those symptoms are extreme as hers were. And so she was not put on ovarian suppression. She was not offered ovarian suppression drugs and she did need to give up her ovaries. Regardless, because she was so dependent on hormone therapy. And so, I think just to reassure those listeners who are very concerned that they might have symptoms as extreme as Miriam's, which were, you know, extreme energy loss, extreme brain fog, and some pain, um, some bodily pain also.

While those are common side effects of estrogen deprivation and endocrine therapy that comes for many of us after breast cancer in the form of tamoxifen or aromatase inhibitors. Her symptoms were actually more extreme because she also lost her ovaries. And at that young age, it's very difficult to lose your ovaries and to lose that supply of hormones that we're used to having at that stage in our lives.

So I want to reassure people that even though tamoxifen can have extreme effects and really alter our lives and our lifestyles, it is not quite that extreme for most of us. And I think that personally, I think that Miriam's ovary loss had something to do with that as well. I'm sure she would agree with me if she were here to comment.

Really interesting set of characteristics. I wanted to talk a little bit about the fact that she had to search for a different surgeon. Again, it's just so common to hear stories of these kind of contrasting first and second opinions, whether it be for surgical procedure or for breast cancer treatment. In Miriam's case, it was both. She was looking for someone with experience with flat closure, and she didn't find that on her first go round, and she had to look elsewhere, and thankfully she found it in her second try, the second healthcare system that she tried in her city. I happen to have also gotten my second mastectomy in Seattle, in her city, and I was at a third healthcare system at that time.

So if you're in Seattle, two out of three healthcare systems that I know of are really good at flat closure. But I think, especially in smaller cities or towns, it is really hard to find a surgeon that does it well. And then if, like me, you're looking for a Goldilocks procedure, it's even harder to find surgeons with experience in that area.

So, really good to hear Miriam talk about how she was reassured that she didn't need to be in a rush and that she could afford to take that time and look for the right practitioners. I love that part of her story. I think it's so important to tell because so many of us feel rushed. Even when we are reassured that we have time, we want to act as soon as possible. We don't want to wait. I personally would never have gone up to Seattle to seek a surgeon or even looked on Facebook for pictures of surgeries of Goldilocks if I hadn't found out that my first choice of surgeons had broken her foot and she was putting me off a couple of months for my surgery only because I was afforded those couple of months to look around, did I get choosy. And I just really want to reiterate what Miriam said is you have time to get choosy unless you have an aggressive. are fast growing cancer. Those are the terms that your doctor will probably use to refer to it if it is, you know, the kind of cancer you need to act on quickly. That type of cancer is pretty rare in breast cancer.

So most of us do have time to look around and get a second opinion. And as Miriam mentioned, she got her education in terms of what to do practically on Facebook. And so many of us do. There's a huge, um, uh, vis, visual kind of support system on Instagram as well in terms of like looking at each other's bodies and each other's outcomes. I've loved connecting with people on Instagram even more than Facebook because Facebook can be so dicey, but Facebook is really the place to go. If you're looking for quick answers in a forum full of women that have been through what you're looking at going through. And both Miriam and I found those answers.

Thankfully, I found a photograph of a woman who lived up in Seattle who had an outcome that I realized I was capable of having, that I could actually still have a small breast after a mastectomy without having an implant. And that's how I learned about Goldilocks, and that's how I found my surgeon for my second surgery/mastectomy. So, really important to know about these Facebook groups. I know that Miriam is on a number of the ones I'm on for flat closure. The main one is Fierce Flat Forward. That's where I found that photograph and there are so many Facebook groups for so many different issues and topics around breast cancer and breast health.

So if you don't know about those and you're kind of in an urgent situation where you really need to find the resources, just pose a question there. You can even do so anonymously if you'd like to. So that's, there's that option now, and the groups tend to be private, and they have some screening that restricts outsiders, people outside the breast cancer community from getting in.

So it's a pretty safe community. Now, if you want to state your opinion about going out in public without your shirt on, you're going to get some pushback in that community, because there's a lot of debate about whether that's respectful and appropriate socially. And, uh, and you might notice that the cover art for last week's episode was indeed me and Miriam with our shirts off.

So, uh, the flat community is kind of famous for, for doing that in the context of a breast cancer walk and breast cancer awareness events. And that's, those are the times that Miriam and I, and those are the times that Miriam and I have done that. Just in that context of other breast cancer survivors. So, uh, we have, we have fun doing that.

We're both kind of uniboobers. And so we both have, um, tend to use a one sided bra in those contexts. And actually she and I are planning to meet up at a breast cancer walk this weekend. The first one of the season here in the Northwest. She and I are both going to be tabling at, um, events in Seattle this year.

We'll for Stantol AFC. We're starting to have tabling this year for the first time. So she'll be one of the other tablers in the two big walks in Seattle. So you can look for her there if you live in Seattle. And I just wanted to wrap it up real quick and leave it at that for this week. I am between vacations right now.

I have a very luxurious August. I, I had a wonderful restful vacation at the coast last week. I'm doing a quilting retreat this week and next week I'm going to be at Burning Man. So. I am putting out the podcast on Wednesdays this month because they're a little bit delayed and that just gives me a few days to catch up.

But um, I expect that my next episode will not be a guest interview as is the pattern, but rather will be a conversation about my experience with radical self expression in Burning Man. Uh, Burning Man has a tradition of um, celebrating impermanence. And the things that are changeful in life, including loss and death.

And I, I have a need because my mom died of metastatic breast cancer a few months ago. I have a need to grieve her and pay more attention to my own grief. And I'm planning to do that there. But I'm also planning to be around other women who have lost their breasts and who have learned how to ritualize that experience and grieve that experience.

Um, so I'm really, really looking forward to meeting other women, especially who are in the same position as I am, having lost my mom, having lost my breasts, having breast cancer as my main adversary this year and last year, um, and just doing some appropriate grieving because I think our, our culture just doesn't allow us to grieve appropriately.

And I think probably my Instagram account will be the first place you'll be able to see me at Burning Man. I'll be taking pictures of myself and having others take pictures of me. Mostly, I won't be taking pictures of others very often because they have a policy against that, that I really support and believe in.

So, it'll mostly be pictures of me at Burning Man. But I hope to take a lot of them and share them on Instagram. And probably one will be the cover art of my next episode here, which will be out a couple of Wednesdays from now. Um, and I will talk to you then take care.