Reflecting on TRAM Flap and Self Blame

A Breast Cancer Diary

There are some terms to define from the last episode, but mainly I want to talk more about the idea of self blame and "I must have done something wrong" raised by Avena last week. This is a topic worth discussion.

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Transcript:

Today I'm doing another diary entry that's reflecting on my last interview. My last interview was with Avena Ward, my friend and writing partner, who had her first mastectomy 30 years ago. So she had some really old terms that I'm going to talk about today. The theme of the interview was following your intuition and self affirmation rather than self blame. But we also talked about some older kinds of procedures that I just want to talk about that are not really in use anymore, but you might hear about from friends that have had mastectomies in the past, and you might wonder about them because of that. So thought I would just define some terms as I usually do on the week after I have an interview, and then also talk about some of the general themes that came up. Avena just had so much great insight and wisdom and her sense of intuition is so spectacular. I just wanted to talk and reflect a little bit on that as well.

So the first term that came up in the interview last Sunday with Avena was the term “radical mastectomy” and you don't hear about this happening anymore—it doesn't really happen anymore. I don't think I've ever heard of anyone in the last 10 or 20 years that's had one. What this means is they used to take not only your entire amount of breast tissue out, but also every single underarm lymph node. There are lymph nodes all over our body, so obviously I'm not taking every single lymph node, but the ones that are located under your arm, which is a very invasive surgery that ends up having a lot of symptoms and that's why they no longer do this procedure. But also part of your pectoral muscle or chest wall muscle is taken in a radical mastectomy. These days that still can happen. You still can have some scraping or removal of the pectoral muscle. I did myself because my DCIS had grown into the outer layers of my pectoral muscle. So that's not unusual. But that is not a radical mastectomy in itself. It has to include all three things, all the breast tissue, all the lymph nodes under the arm and the part of the pectoral muscle that is located under the breast. It's only a little less than half of the pectoral muscle that is located under the breast, but that is also removed in every instance with a radical mastectomy. And for that reason, yeah, we, we just don't see that being done anymore. Mostly because lymph node removal is very costly. in terms of quality of life and, uh, side effects of surgery, which in most cases is lymphadema. More, and more, and more, you see the science pointing towards less lymph node removal, really lessening that as much as possible. I was in San Antonio for the big breast cancer conference, research conference, this last December, and that was actually the biggest takeaway that most of us got, I think, was really lymph node removal is not going to benefit us if we can replace it with radiation. Because radiation does not result in as many long term side effects or quality of life issues like lymphadema. And with most surgeons techniques these days, the removal of lymph nodes more than one or two really does. It is very likely that folks will get long term lymphadema, and lymphadema is a really big hassle. You have to wear a sleeve in the summer when it's hot, your arm is always Um, I have a lot of friends with lymphadema and it doesn't go away. It's not something you can address with drugs or therapy. And so folks are in the medical community and research community are listening to patients when they say “it has not been worth it for me. I would have rather had more radiation.” And so that's what's happening now. We're changing still in this trend toward moving away from lymph node removal. Again, I'm not an expert. I'm just an advocate. I'm a well informed advocate, but your doctor is the expert. So do not take my advice here as medical advice. I am only trained in nutrition in terms of medical advice. So, go back to your doctor with this information and seek out their expertise on this if you can. And if you have questions, cause I'm not the one to ask, but it is really interesting to me that we're moving away from those more invasive types of mastectomy procedures. So, we do have something called a modified radical mastectomy these days, and that is taking less lymph nodes, but my guess is that even a modified radical mastectomy is on its way out based on what I saw in San Antonio this last December.

The next concept that came up in my interview with Avena is a favorite of mine. She is a survivor of lobular cancer and lobular breast cancer is something that most women don't know about, even if they were diagnosed with it. Sometimes doctors don't tell them that they're diagnosed with it, number one, and most doctors don't fully understand it themselves because it has been drastically understudied and very, very seldomly separated from the other type of breast cancer that is more common, which is Ductal. And the two names of Ductal and Lobular are even being revisited these days in the scientific community. And that's kind of hot off the press. Only the people that are on the inside of Lobular Research really know that, so you're not going to hear your doctor affirming that probably, but because I am an active volunteer with the Lobular Breast Cancer Alliance, and I go to staff meetings, and I hear the latest news, that is something that has just come up in the last couple of months that Lobular was called Lobular because we used to think that it was located, the cancer was located in the lobules or that it started in the lobules, and ductal was called ductal because you thought it started in the ducts, but you can have Lobular breast cancer in the ducts and you can have ductal breast cancer in the lobules. So those are misnomers. They are mislabeled names that really probably should be replaced with a little bit more accurate names. The thing that makes lobular cancer itself and distinct from ductal is that it grows invisibly in a spiderweb like formation and not a lump or a tumor. So it is very hard to detect. And that's why I was shocked when Avena said that they actually detected it in her biopsy with Dr. Thurman. And I'm all the more impressed with Dr. Thurman's techniques because of that, because generally, you don't get, much of lobular in a biopsy unless it's really extensive, and Avena's wasn't very extensive. So, kind of surprising that they did catch it in the biopsy. I will talk a lot more about lobular breast cancer in the future because it deserves a couple hours of dedication and this is just a light summary of terms, but suffice it to say, there is a characteristic called E-cadherin. It is a genetic characteristic, not always an inherited generic characteristic, so not always something that we get from our mother or father or grandparents. Sometimes it's a mutation that happens. during our lifetime, just in us, and it is called E-cadherin. E-cadherin is the glue that sticks cancer cells together and makes them into a lump or a tumor, which turns out is a real blessing because we wouldn't detect cancer if it didn't stick together with that E-cadherin component and form a tumor, um, as often. So, lobular breast cancer is not detected as often as is the case in my own story. I did not know that I had lobular breast cancer until it was already out of my breast. And many, many women find that to be the case. A lot of times you're going in after ductal or DCIS. And as kind of a, a side effect of surgery, you see that you also have invasive lobular breast cancer in there, and it was invisible to all the scans. I had a PET scan, I had many MRIs, I had many ultrasounds and many mammograms, none of them picked up my lobular breast cancer. Albeit, it was a very small amount of lobular, I should say. If it gets quite large, then the scans will tend to pick it up, especially on an MRI. But there is new technology, a new PET technology in particular that will show a lobular growth—it's not a tumor, but a lobular lesion—will show up, um, on these new PET scans really well. So there is a new technology that we've seen getting developed and being tested and used in the scientific community. And it is just starting to be used in the clinical community now. So that's pretty exciting. I'll talk a lot more about lobular as we have more guests on that have that diagnosis. And I'll probably take a whole episode at some point just to talk about what we've learned. Because we have a lot that we're learning about lobular now that there is research that's dedicated just to it and not to the greater breast cancer community. I will say though that there is an event this year that you should know about if you have lobular or if you've had lobular or if you're interested in lobular, this year will be the first year that we will have an international lobular awareness day or lobular breast cancer awareness day. It's going to be on October 15th. And different states in the U. S. are in the process of approving it as a National Awareness Day. And we're going to have events all over the U. S. Here in Portland, Oregon, there's one at Providence Cancer Center in Northeast Portland, there's going to be an event at Sloan Kettering and MD Anderson and a number of other places there's, they're going to ring the bell at the Stock Exchange in Toronto that morning and proclaim it International Lobular Breast Cancer Awareness Day. So if you're interested in events, be sure and reach out to me and I'll let you know where the closest place near you to gather, get together either virtually or in person would be. And you can reach out to me at my email address, which is Kathleen Moss @protonmail. com.

But moving on past the Lobular, I want to talk about the procedure that Avena had that is also a little bit less known these days or heard of these days, which is the TRAM flap procedure. Tram flap was one of the first kind of flap procedures that we saw used in plastic surgery setting to reform a breast or a breast like mound without using an interior prosthetic or implant. It is using, like Avena said very well, is using both skin and muscle, and it is an outdated procedure at this point. You don't hear people offer it to patients anymore, and that's because the simple fact that it, It tended to show a lot of hernias because the muscle was misplaced or displaced and realigned, um, up north of the abdomen. A lot of folks had hernias down where that muscle was supposed to be holding things in. And so we have something called DIEP flap or DI-EP flap as they say in the UK and Australia which is, uh, a really good replacement for TRAM Flap. It is not involving that abdominal muscle. It is just using skin and fat from the abdomen instead. So it's a similar procedure in that it uses skin and fat from the abdomen. It just doesn't use the muscle. And, uh, the words that are being stood for in the term DIEP Flap are deep as in D E E P, inferior epigastric perforator flap, which is just a way of saying the flap is, is kind of named for the abdominal blood vessel in that area. So it's just named after the blood vessel that travels through that area. And we will have guests on that have had a DIEP flap. I will say that my impression is at this point, and I'm not very experienced in this area, but my impression from talking to friends that have had a DIEP flap is that it is just as involved as a TRAM flap—it is many hours long, um, and maybe a day or two recovery in the hospital afterwards. So it is not a light procedure by any means. It's not as easy as having an implant. or going flat. So that is kind of a light definition of TRAM versus DIEP. You'll hear the DIEP term these days where you would have heard the TRAM flap before DIEP came along. Another term that Avena talked about was myofacial massage, and I think Avena did this term justice and talked about It's just a light form of massage that you can learn to do on yourself or you can go to a professional to do it on you. This is something like many other things in the breast cancer therapy world. It's kind of an elite offering. So if you go into the average breast cancer clinic and you say, I want myofascial massage, it's kind of like saying I want a nutritionist to help me with my breast cancer recovery and resistance to recurrence. They'll look at you like, “um, sorry, we don't offer that. That's a little beyond what we do here. We're just keeping people alive.” And really, I think the alternative/integrative community of medical professionals does this kind of work a lot better. Because after all, the conventional medical system is really just there to keep people alive. That's what they do best. And that's what they're doing when they do your mastectomy refer you to get your special bras or prosthetics afterwards. They're doing the bare minimum to keep you alive. You really have to go to the kind of alternative, or integrative, which is the term that I prefer to use or the community that I prefer to associate with myself to get these special, really deeply healing therapies like myofascial massage. And most of us need those. Most of us need more than. You know, a wig for when we have chemo and the cold caps and things like that to reduce the, the nerve inflammation, most of us need recovery help and we don't get it. And I just want to acknowledge that's kind of an elite thing. That you have to have a lot of money or really good health insurance in order to be offered. And you kind of need to know how to seek it out too. So you might need to call around. I found out about my excellent massage and physical therapist by going to my local breast cancer support group. And that's kind of one of the best things I learned from that support group. So you'll learn from other patients and these days that's happening a lot on Facebook groups based on the kind of breast cancer that you had, whether it's lobular, ductal, or whether you went flat or had implants, you'll, you'll probably find a Facebook group that is matching the description of your experience and no matter what that is based on, you will find really good advice there, especially if it's a local group on where to go for things like myofascial massage and nutrition and acupuncture and physical therapy, even a lot of patients don't even know that they're eligible for physical therapy after mastectomy and that they might need it to keep their tissue loose and not get all bound up with scar tissue, but it's really essential. In my opinion, it's one of the most essential things. So, myofascial massage is another thing that is, I guess, kind of a luxury, but also semi essential just in terms of not having pain and not having irritation on into the later years after a mastectomy.

Now, getting into some of the more esoteric topics of discussion in Avina's interview, I just love that she touched on the concept of: “What did I do wrong” and the solution to that, having a community of other loving women around you to affirm, “I did nothing wrong.” That is one of the most powerful things that we can talk about in the breast cancer community. During breast cancer recovery is how much do you blame yourself? What do you think you did wrong? We all think we did something wrong. I mean, it's just natural, right? You kind of have to admit that before you can move on. But having other women around you that love themselves and either have forgiven themselves for what they think they did wrong, Or have talked themselves out of the fact that they did anything wrong, based on their beliefs. That is the most healing thing psychologically that I've encountered myself. And I love that Avena brought it up in this way, that the first time she had a mastectomy, she was alone. She had no one to tell her, you did nothing wrong. She had no one to witness, you did nothing wrong. She went away with the impression, “I must have done something wrong. After all, I was in La Leche. I learned that if you breastfeed, you are safe from having breast cancer. It must have been something I did wrong because I did that right and that was a pretty major thing.” She was alone with those thoughts. And she points out that not being alone is a key way to get over those thoughts. And I just have to repeat that over and over, shout it from the mountaintops. Do not be alone in this journey of recovery. Find others who have gotten past that self blame stage. And I see this all the time being a nutritionist. People are either clinging to me for what they can do right from now on, because they believe that what they ate was what they did wrong, or they run from me because I'm such a trigger, reminding them of what they did wrong, which was put a certain kind of food in their mouth, which in my opinion is totally false. You don't get cancer from putting a certain food in your mouth and you don't grow cancer from putting a certain food in your mouth. It's much bigger than that. Now it can play a role. It can have some influence in your momentum toward health to have a healthy diet for sure. And there are toxins, there are carcinogens in our foods. But that is not the only factor and it's not the main factor as far as science knows right now. And science is pretty advanced right now. So if you feel like it was you eating certain things that caused your cancer to grow or caused it in the first place, please be around other women that don't believe that belief. Find other women that maybe have thought that in the past and have come away from that belief. Or make an appointment with me because I can tell you with scientific research, with solid, solid research, that that is just not true. Now, stress is a huge factor. That's a big one. Exercise is probably the most scientifically founded belief in terms of like if you were a couch potato for the 10 years or 20 years before you got cancer. You know, you might be able to forgive yourself for that because there is some research that that could move the needle. Chances are it's not anything that you did wrong. Cancer finds us total involuntary methods. It comes into our lives in ways that we cannot see or prevent in almost every case. And then the things that grow cancer are multifaceted. So many different things, so many different viral infections that can get involved in autoimmunity that you might not know that you have and might not be able to know that you have. Heavy metal poisoning, you know, the list is endless. Nutrition and exercise and sleep, stress reduction, those are all part of it, but they all go together. There's not one that stands out as the single factor. And we're all doing the best we can, right? Like, we know about stress, and we know how to reduce it. We're all doing the best we can to reduce it. And we learn new techniques. And that's all you can do. So forgiving yourself for what you have done that was a little lazy, maybe, but also being around other women who are perfectly imperfect, just like you, who still love themselves and have forgiven themselves for whatever little bits of things they could have controlled. It's huge, huge. I can't say it enough.

And then at the end of my conversation with Avena, we talked about the difference between a private clinic and a hospital imaging center and the kind of treatment that you get there both physically and just in terms of the quality of the machines, maybe, and spiritually in terms of how much the staff is overworked and underpaid and distracted, burned out, really, I mean, it's very, very likely that most of our hospital staff these days, especially after COVID is a little burned out and even Dr. Thurman in that private clinic that she and I go to is probably somewhat burned out, but because she's able to manage her hours and the number of minutes she spends with each patient herself, it is a huge difference walking into a private clinic that is much more expensive, usually out of network. Usually I don't go to Dr. Thurman's clinic unless I've already met my out of pocket max for the year because it's so expensive I can't even pay the copay. It is an elite opportunity, no doubt about it—and yet... We'll talk more about this in the future—and yet, isn't it worth it? Isn't my survival worth it? Isn't Avena's catching her cancer worth it? Absolutely. It is worth way more money than we are usually prepared to pay. To get that kind of outcome that Avena got, she went into her regular hospital system back in Chicago. They found nothing. A couple months later, she came in to a private clinic, and I don't know, I don't know, maybe it is just the machinery that they ordered that was more up to date, or maybe it was the skill of the practitioners there, but for whatever reason, they found it. And that made such a huge difference in Avena's survival, and it is worth paying a little extra for, I think, especially if you have that extra. Not to mention the spiritual aspect, like Avena was focusing on, are they caring? Do they have the capacity to care for me while they're caring for my body? It's a question we should be asking. And spending a little more time getting to the bottom of with each of our practitioners and voting with our feet, you know, like: “if they can't care for me. I'm out the door. I'm sorry. I'm not going to support and live the rest of my life knowing I'm supporting someone continuing in their career, treating patients like this.” And we'll talk more about that in my next interview with my friend Miriam. She has something to say about that too. Most of us aren't in such a big hurry with breast cancer that we can't get a second opinion and Avena really Illustrated that well with her story. So those are the things that I wanted to recap for this episode. I also want to tell you that after my interview with Avena, we chatted for about a half hour after I turned off the recorder and she told me that she was hoping to go to Burning Man this year. And I said, Oh, I'd love to go to Burning Man someday. I think that would be a really healing experience for me. And she said, “well, do you want to go with me?” And I said, “how are you getting tickets? It's just a couple months away, right?” I think it was less than two months away at that point. It was like a month and a half away. And she said, “well, my, my son says that there's still tickets and he's really connected in the leadership and seems to be plenty of tickets this year. So if you want to go, we can take my van.” So in a couple of weeks, Avena and I are leaving for Burning Man. And, uh, I think. If you check out my Instagram at @a.breast.cancer.diary with little dots in between the words, you'll see some of the highlights of what happens there. Probably not until the first week of September, cause I won't have any wifi out in the desert, but I think that's going to be a really amazing experience for me and my body. Just have that much more, um, self expression and self affirmation and community affirmation. It's going to be mostly community of strangers, which is weird. I don't have a lot of friends going and I have just a couple of acquaintances going, but, um, I'm already really, really excited and feeling good about my camp. I'm connecting with them every day on WhatsApp and planning for all the things. So I think it's going to be a really, really amazing experience and I'll definitely do an episode that's just dedicated to my Burning Man experience. So stay tuned for that sometime. September, October, somewhere in there. This fall will be a little bit less of a, um, kind of structured routine with the podcast. I think I'll get into some breast cancer walks and interviews that are live out in the community. A little bit less quiet audio and some kind of noisy settings, maybe. So we'll see how that goes, but I'm excited to shake it up a little bit this fall and because I am going on vacation this next week and also going to Burning Man this month after that, I may have a little bit of a delay in early September where I don't have an episode for one Sunday. May be two Sundays. So if that happens, I will let you know for sure in advance. But that's why I'm having kind of an unexpected vacation at Burning Man. So wish me luck and Avena. Luck will become the best of friends while we're there, even though we hadn't met in person. We still haven't met in person. Actually, we're meeting in person for the first time tomorrow. So that'll be really fun. But my next interview is with my friend Miriam up in Seattle, and she has a delightful story. She is a uniboober, a single breasted woman. And her story is mostly around, uh, getting a second opinion, following her intuition and navigating some really crazy assumptions about young breast cancer patients. So stay tuned for that next Sunday and I'll talk to you then.