Debbra

audio
Age at interview
51

Debbra (51 years old) is self-employed and is currently working reduced hours. She has a 12 year old son who lives with her

Debbra received her first diagnosis for breast cancer in 2008 and in 2013 she learned that it had spread in her body (metastasized). At the time of the interview she had just finished 6 months of chemotherapy. Debbra lost an aunt from another form of cancer.  For some reason, Debbra had a gut feeling that she should have her mammogram early. Debbra’s breast cancer, mucinous breast cancer, is unique in the sense that it doesn’t show up as a lump in the mammography. Fortunately, she was screened by a senior ultrasound technician who realized that what she was seeing was different and sent her for more testing. After the diagnosis, Debbra underwent a double mastectomy with a direct reconstruction, followed by chemotherapy. The results of Debbra’s first reconstruction were horrible and she had to have the damage rectified by a second surgeon. During the treatment, she also switched oncologists as she disagreed strongly with her proposed treatment plan. Her second oncologist adjusted the treatment approach which reduced her side-effects. After her treatments were finished, Debbra never really thought about the possibility of recurrence, and it was her physiotherapist who suggested that she have an x-ray when Debbra saw her for back pain. Following further testing, she was told that the breast cancer had spread to several different spots in her body. Debbra’s son was five years old when she was first diagnosed in 2008. At that time she explained her that she had bad cells that had to be taken out. Now, 6 years later, she told him about her new diagnosis and kept it to honest minimal details. One big difference this second time round is that she has learned to open up to people around her and to accept help, and this, together with help from  support groups, makes her feel a lot less isolated and in that sense easier for Debbra.

Time since diagnosis
6 - 10 years
Phase of treatment
Metastatic cancer

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It’s going to affect you long-term as well this is something you’re going to have to live with and, and you have to process and I mean if you’re somebody who’s never considered going to a counselor it’s not such a bad idea.

If you don’t have anybody that you can truly open up to and have a safe place to talk to some of your fears and your concerns about. I just recently started seeing a counselor and it’s a nice place to go to sort of say "Okay this is, this is what I’m thinking today and some of the things that I’m really concerned about and what I want to have some plans in place for." You’re either a planner or you’re not I’m a planner A-type personality, sorry, and for me it was having a security blanket for my son, having him to make sure that he’s okay if something starts to go down the road. So what we did is we, I started to see this counselor and I thought that she would connect with my son, and she had worked with children, so I’ve seen her three times now. And so we had him meet her under a, not for a session, just and she, my son loves dogs, and so she brought her dog and it was just a meeting session. And so we’re going to continue to do this over the next little while and so she’s going to get to know him, and so he’s going to feel comfortable so that if things and I’m going to say if because I’m going to be continually optimistic that I’m going to try to have as many years as I possibly can. But or if I find that his, I’m sensing something that he’s not opening up to me about, then he has a safe place to land and some place safe to talk to because he’s a protector in nature and wants to protect mom and so I think I don’t hear a lot of stuff that he has to say or a lot of his fears and stuff like that.

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My first experience was extremely exhausting because it was fighting, it was trying to figure out what was going on. I was very disillusioned with, with how bad the healthcare system was and then I was lucky, I had a great social worker. The social worker allowed me to put things in place so that I could switch oncologists.

So here in the city we have one cancer agency and so my biggest fear was if I switch oncologists will my care be minimized or downgraded because now I’m considered a troubled patient or a difficult patient. And so again, it goes back to these patients who don’t realize, if they’re not connecting with their oncologist, it’s okay to switch oncologists. You may not connect with them for numerous ways but if you don’t trust your oncologist and if you can’t communicate with your oncologist get a different oncologist. It is so important that you go through this journey supported and feeling that you're not second guessing every single thing that the oncologist is doing. So that put a very bad taste in my mouth for the whole system as it is.

This new oncologist was a lot better and we finished, got my, got everything adjusted in terms of dosage and different things.

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As long as you have your facts and you have your information correct but you have to be careful on the Internet. You have to make sure your source is reliable and I guess a good source in Canada to go to is the Canadian Cancer Society. It has a 1-800 or l-888 number and there are cancer specialists there. The other place that’s really good is the Willow Support Group, they have a librarian there and sometimes they can help as well in terms of doing literature searches. The literature searches that I’ve wanted to do because of my background, I’ve always been very technical, so sometimes the Canadian Cancer Society will only do in a certain parameter where the Willow group really did some massive lit searches for me when I was looking for some specific information about tumour markers and the lymphatic system and things like that. Those are different things and then what was the other group? There’s another group the Gilda Club out of Toronto is a good group for kids.

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Mine was a unique start in my journey. I lost an aunt and it wasn’t to breast cancer but it was to cancer. And for some reason I just had this feeling in my gut that there was just something and I can’t explain it. And so, I just went to my physician and asked to have a mammogram early. And then all the things lined up. So with the mammogram, they’d seen something suspicious and then they sent me for an ultrasound. And I was just lucky that I had a senior ultrasound technician who realized that what she was seeing was just different than what she’s normally used to seeing. She wasn’t seeing a lump because I was diagnosed with mucinous cancer, which is a slimy cancer that sort of spreads and so you don’t get the lump. I did have another component to my cancer but it was a smaller component. So it was very, very fortunate that I had an experienced ultrasound person who saw it.

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Okay HER2 *(Human Epidermal Growth Factor Receptor-2) is an elevated protein that usually means that the cancer is a little bit more aggressive and there’s a drug called Herceptin and now there’s a whole bunch of other drugs that are available for HER2-positive patients. So I pushed because I was 0.02 off of being considered HER2-positive and so again, I had to push because again you need to know about the sensitivity of how these tests are done and it wasn’t a hard stretch to say “What harm will it do to give a very healthy woman like Herceptin or a HER2 agent?” And so, then I pushed to have HER2 Herceptin, for my HER2 and did that for 18 sessions which took about a year and 3 months and then again with HER2 or Herceptin, I should say and a lot of the agents that are used when you’re HER2-positive they can cause cardiovascular issues.

And that was the other thing is that, there’s two different tests that you can have to test your heart functions. One’s a MUGA* (Multi Gated Acquisition Scan) and it’s used with radioisotopes and the other one is just an imaging like an ultrasound. They had done a MUGA which is the one with the…They inject dye into you and that one had said one number and then the other procedure a little later on had shown that my heart function had dropped. And so the heart function they say is or they utilize the term ejection fraction and if you drop more than 20% on your ejection fraction you need basically, to stop the drug. But again my oncologist wanted to take me completely off of it and not restart me and I had only had 5-6 treatments. In everything I had read if you can get the full treatment it’s better for you. Again I had to go back to the Internet. I actually had to pull the Herceptin guidelines, Canadian Herceptin Guidelines and show them to her which is if you have somebody whose heart function drops then you have to stop them for 6 weeks and then reinitiate them. That’s the protocol. If I wouldn’t have pushed for that I wouldn’t have had the full dose of Herceptin. Would it have made a difference now that I’m metastatic, I don’t know but the fact is that we know that it could have made a lot, I mean I think, I personally believe it would have been a lot worse if I didn’t get the full dose. But again having the knowledge and not being afraid to stand up for what you want and that’s basically what I did is I went toe-to-toe to the Head Oncologist when I went in for Herceptin and he was going to deny it for me and so I, again, it was a fight but was it a valid fight, yes. 

So again I think huge learnings for healthcare people. It’s all about cost but I think it’s something that needs to be pushed. I think as a patient you need to be aware of some of these options that you can track and not to be so trusting in everything that they say. I don’t mean to be sceptical or cynical it’s just that they’re people who put their pants on one leg at a time and they can make mistakes too and you’re the only person who’s going to look after you. I find here in the province we don’t have many options. We can’t really go to another cancer agency, we have one, so sometimes you need to fight the system more than you need to do anything else.

* HER2:  A gene present in cells that, in some breast cancer cases has a mutation. This mutation causes the HER2 gene to be overproduced in breast cells, causing the cells to divide uncontrollably.

* MUGA scan: Scan that creates video imagery of the hearts ventricles to check for abnormalities and to ensure that they are pumping blood properly.

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So we’re going to go into reconstruction. So as I said, the first, I guess my first clue to this plastic surgeon that I originally had should have been that he asked why I was here. Obviously he didn’t read my file or anything. I knew nothing about plastic surgery and I really hadn’t had time to really research reconstruction. So he made me feel like it was my responsibility to do all this reconstruction. He really didn’t give me sound options or even viable options. He sort of pushed me into the tissue expanders which is you put a plastic container with a valve underneath your chest muscle to expand it and expand the skin. They can then take those out and put in implants. And you go in for injections every week. Again, not knowing anything, he really over expanded me. I went in for 17 injections and I guess that’s way past where they do it and so that stuff was fine, the injections were fine but he just wouldn’t communicate with me. And there was one point where I had to bring a friend in, to stand at the door. I had my hands over the port sort of things that were over your chest. So I had my hands over my chest, I wouldn’t let him inject me with the saline, because that’s all he needed to do, until he answered my questions. Because he’d come in and then I’d try to ask him a question and he goes “Oh, oh, oh,” And he’d inject and then he’d take off. That’s another trick, put your hands over the ports and they can’t move. And block the door.

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Because that’s a huge thing that I think patients need to understand and have a lot more information in terms of what’s available out there. There are so many products now, mastectomy products that I didn’t know, that I wasn’t aware that they were available.

Interviewer: Prosthesis you mean?

Prosthetics. There’s a company here in the city that actually does light weight prosthetics and they breathe a lot better. They could actually take a mold of your breasts before you have surgery and then they take pictures so you have the same colour.  Let’s say you’re doing one then they’ll have the exact same size for the other side when you actually have your surgery done. And so the lady that I was walking through the journey with just recently, she chose to go that way. So I went with her and it’s really quite cool. Now she has the option of having prosthetics made to match her other breast if she chooses not to remove her other breast so it’ll be the same size. They can do the same colour and they have incredible ability to do these techniques. 

They also do the areola and the nipple area. If you do reconstruction you can just have that made and put on so that if you’re wearing a T-shirt or something like that, you can have that. So that’s, there’s a lot of options now where it wasn’t available before. And I think it’s a very personal decision in terms of “Can you wake up in the morning and see those scars and being flat?” I was incredibly chesty and I had a very big bust when I was diagnosed and I, me personally, the idea of being flat was just foreign to me. So I, that’s again one of the reasons why I chose reconstruction.

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I was going to my physio (therapy) for my lymphedema and I think she just had a feeling that it was presenting and it wasn’t going away. We had tried to do a couple of different things so she suggested I had an x-ray. And the x-ray showed that they couldn’t see my 5th and 6th rib very clearly. So again, when you have breast cancer and there’s an ambiguity in any of your test results, always, either have them redone or have the next level of test done. Because thank goodness we had the next level of test done, which was a bone scan, and that’s when we found out that I had gone metastatic. The cancer was in my spine, two of my ribs, three places on my spine, my lungs, and all of my lymph nodes in my chest area were enlarged as well as my arm, in my arm where the original cancer was.

This journey was totally different than last journey, I didn’t do it alone. It was a lot easier. How I was told was just kind of weird but that’s… Because my back was hurting so bad we were assuming I was fine. I guess that’s a big thing for breast cancer survivors, is that if there is pain that doesn’t go away no matter where it is, or discomfort, if you’re just not feeling well, get it checked out sooner rather than later. I had no idea that it could, I don’t know why, I didn’t think it could go into my back but the back, your lungs and your liver and your brain are probably the first places that… that’s the likely places for it to spread, for breast cancer. But the spine and the back are one of them, so if you have persistent pain that doesn’t go away and that starts out not as bad and then increases intensity, then make sure you get things checked out sooner rather than later.

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There’s limited resources, there’s no support group here at all for metastatic patients. There’s limited understanding and I belong to the Saskatchewan Breast Cancer Connect so these are a whole bunch of survivors and what I found is that it’s pretty scary for a group of women who are breast cancer survivors then for one of us to flip and become… I was really concerned for the group because one of my biggest fears was for my cancer to come back and so I wasn’t sure how the group would manage that. And it is a scary thing and we’ve had some honest conversations and that’s one of their biggest fears and so again these group of women who have been through it the first time, you get different reactions with them as well. Some of them can’t handle the fact that, and I’m one of the youngest ones in the group right now, and so here I am, I think I was very vital and energetic and stuff like that and to be hit again and… so I found that I pulled away from them because I didn’t want to scare them and I didn’t want them to be hit in the face of what could be facing them.

The Canadian Breast Cancer Network had pushed and done some advocacy to make, I think it’s October 13th metastatic breast cancer awareness month, or day I should say. Because that’s the other thing, you go through as a metastatic patient, you go through and hear all these things about survivorship and it’s just… it’s really… everything is about these women who are dealing with their process but they’re… they have hope and stuff like that. And sometimes you feel like you don’t fit in and there’s no place for you because you’re, “Do I classify myself as a survivor or am I going to be…I’m not going to be a survivor because we know that this is going to take my life but where do I fit in? What part do I attach to?” And so that, I think is something that needs to be truly looked at.

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So yeah, so there’s ways to manage your family members and I think that’s depending on your relationship with your parents and stuff like that. I think it’s very important for them depending on your situation, and where your cancer has spread, to make sure that they understand that advanced cancer doesn’t necessarily mean a death sentence. That it’s going to be a ever, I use the analogy of a chronic condition that we’re always going to be treating it. It’s never going to go away, but there is hope and there is ways to stay positive and constantly... there’s so much more advances to be able to constantly keep it in check or to try to keep it in check. And if you can, if you can start to have them see that, I think that then provides them with a little bit more reassurance and stuff like that. And again, it depends on where it is, and then I think you have to be honest with them. I at the very beginning of all this stuff, I hid a lot of things because I felt I had to be strong. My sister and I are extremely close and so I didn’t want to show her all my fears and all my emotions and stuff like that. So I would put up a little wall and I would be strong and you wouldn’t know this now.

And so I think the uncertainty for me is the hardest part, but having a plan in place with some stuff in place is sort of liberating for me. For the first little while before I sort of started to put things in place, I felt a little disjointed and very agitated. Because what’s going to happen, for a control freak or a control person it’s really difficult not knowing what’s going to happen. How do you plan a trip when you don’t know if you’re going to be back on chemo or not? Things like that. Actually, my husband actually said "We’re going on a trip on Monday." And he sort of said "If it does come back, we have bigger things to worry about than the money so book the trip and just go." Don’t, don’t put your life on hold because you don’t know, you can’t.

Every time you go for these scans and these checkups that you know you’re never sure what’s going to happen and so there’s this huge anxiety. Be aware that it’s going to happen and just be... put in place some things that will make you feel better. Is it being by yourself, is it having some people around you, is it having whatever, but always have somebody at appointments with you is the key thing. Because there’s so much that’s going on. And don’t shut other people out because it’s isolating enough that if the people truly love you, you need to work this thing through. You need to, in a way, they need to work it through as well. It’s sort of a symbiotic relationship where you’re both giving and taking. They may not think that they can help you in any way. But it’s just the unburdening and making sure that you keep it real, and it’s okay to cry and it’s okay to have bad days but it’s okay to forget about it for a while too. Try to go enjoy things that you love to do and stuff like that.

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The other thing is… what I did is, I put a great big picture of my son on and I had a binder, like a notebook and I put it in the front. And when I got questioned about why I was doing something, or I got the sense that they weren’t understanding, I’d open to the picture to my son and I said “He needs a mom and this is why we’re doing it.” And you humanize it. I’m not an old woman, I am not ready to die and I am not going to leave him without a mom. So now, let’s have this conversation again. It’s not what I said, but it came across that way and they need to understand there’s human. It’s not just these lab results and this person who’s sitting there, they’re thinking “They’re hypochondriac.” And I know, she said to me, she got a call from the radiologist that said “Why am I doing the biopsy again?” Because they biopsied the same node but she was still okay with sending me for the biopsy because that’s what she knew that I needed and it was okay. And I know she tried to make me feel bad. I just sort of said "Well now we know for sure it was reactive don’t we and that makes me feel a lot better. I know you didn’t believe in it but it takes the 95% and takes it down a little bit more.” So she was okay with that.

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And always, I went into my appointment with a friend and before the appointment, I say “Okay I want this, this and this discussed with my oncologist could you please make sure that these things come up if I forget.” Because when you’re in there and you’re discussing it, there’s a lot of stuff that might be being thrown at you and so it’s nice to have, again type A personality, a plan. Write your questions down. If you find that you’re oncologist is trying to rush you through it, make him stop. Make him stop, that is your time with him and no question is silly, no request is silly they need to hear what you have to say. You need to build that rapport with them and stuff like that. You obviously do everything respectfully. I don’t believe in being rude or obnoxious or yelling or anything like that but there’s a difference between doing it forcefully and getting what you need, and doing it disrespectfully. I don’t… you’re not going to get anywhere with the other one. But I’ve never had any issues with just saying I don’t… I told her, I said “I’m sorry, I don’t I know, you feel comfortable with that but I don’t.”

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I think that more needs to be done in terms of working with the couple for the intimacy factor and stuff like that. I know I never had any discussions about it with my GP (General Practitioner) or anything like that. I think it’s something... where do you go and talk about this stuff? There’s really not a lot that’s said. You’re on drugs that dry all your estrogen which means that you know you have a whole bunch of other things that are happening. Your arousal, all that other stuff doesn’t happen and you still want to be... you might want to be but you also don’t feel attractive. You’ve lost your hair, I didn’t really feel very attractive being bald and there’s no hair anywhere. That part, I think is hard for them, because not only are they losing parts of their wife they’re losing the intimacy factor. And maybe other couples are different and they manage around it differently but I know that was a struggle.

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I, never read anything, so maybe there’s a way, maybe there’s a sex therapist that can give some views on how to change the intimacy process when you’re missing parts. Because, that’s what... you feel you’re missing parts. Especially as a double, you don’t have any stimulation on the breasts anymore and you don’t feel a lot depending on how your scars heal and how much scar tissue you have and stuff like that. So it’s even with big ones, they don’t feel the same. That kind of stuff. So something, and I don’t even know whereabouts to go to get that information, because I never thought to look it up. But I think it should be something that is discussed and something that’s brought up sooner rather than later. Because if you can ease into it, then it doesn’t become such an issue later on.

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The day before I went in for surgery, I sat down and said that I had some bad cells. I used bad cells instead of cancer for a couple of different reasons. I think it’s really important for kids to... at various different ages to hear the different kinds of information. Bad cells they can relate to something’s wrong and that it’s got to be taken out, especially at age five. That was easy for him. Using the cancer word or the ‘C’ word I think is just terrifying because they see different things and they hear different things about people dying of cancer. Until you know where your stage is at and what kind of diagnosis you’re actually going to have, I think that’s almost like overwhelming and it creates a little bit more fear in their little minds than it’s worth type of thing.

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Children have got to be the hardest thing to put into this equation. I think if he wasn’t around it would be so much easier because you’re brain goes to what’s going to happen? Am I going to see him go to Grade 12, and am I going to be able to be there for him? And it’s really, really difficult. How much information do you tell him? And one thing that I really realize is that you now go from a 5-year-old to an 11-year-old and their brain changes and their ability to comprehend completely change and they sense. My son and I are incredibly close and they sense it, if you don’t say something they go to a really dark place and they think the worst and stuff like that. They don’t need to know everything. He didn’t know a lot of the places where it was he just knew that the cancer had come back. He maybe... we were lucky because when he was younger mom beat cancer, right... so mom’s going to be okay. So he doesn’t quite get the fact that I probably won’t be okay. And that’s okay. He doesn’t need to know that. I sat him down after I got all the information and that’s again, I didn’t want to tell him before I had all the information because I wanted to be able to give him a true picture of what was going to happen. And you keep it in honest minimal detail. I guess would be the best... I can say it and he just understood that the cancer had come back. Now this is going to mean that we have to go back through chemo and radiation and all that sort of stuff.
 
On the metastatic journey or the advanced breast cancer journey, how I discussed it with my son was to say that it had come back and that we have to go after it. If you’re listening to this as you’ve already probably been told is that metastatic isn’t going to go away. You’re going to have cancer in you at some degree and you’re never going to be cancer free or be classified as cancer free. So I was honest with my son and just sort of said, I used the term that it was like a chronic condition that we’re always going to have to be watching it and that I’ll always be going through different treatments and have treatments and it’ll vary how I respond to the treatments in terms of...if the cancer comes back or when the cancer comes. Not if the cancer comes back but if the cancer starts to grow again and different things like that. That seemed to provide him with some ability to get his head around it and not to put him in a scary spot. Some kids they’re the social workers at most places will have programs for children. My son never wanted to go to one but I always tried to find some time where it was just him and I. I found snuggling with him in his bed where we’re not looking eye contact, then he could ask some questions and some hard questions like am I, "Are you going to die?" And things like that and you’re going to get that question depending on the age or if you don’t get the question you should bring up the question because it’s going to be in their heads. That’s a very difficult question and you should probably think through it because it’s a hard one to deal with.

Interviewer: Can you tell me how you responded to that question?

I felt it was very important and what I had read is that you have to be as honest as possible because then if you’re not then they feel that you’ve lied to them and there’s a lot of anger afterwards if you do die. That’s what I had read so what I chose to do with him is I introduced it slowly, let him get used to the idea and then I would snuggle and then just ask him about different things or say different things and try to bring him out. And then when he did ask that question I told him that I didn’t know. I said, I was honest and I said "This one I don’t know if we can, if mommy will ever be, I will never be cancer free and I don’t know what this is going to mean. But all I can tell you is that I’m going to fight my hardest to do everything I possibly can to beat this." Because that’s something that he could understand and relate to. But if you want to be brutally honest is to live as long as you can but I think at 11 he doesn’t need to hear that. I think to make sure that I’m around to beat this is okay. In his idea of beating it is just make sure the cancer doesn’t come back. And then, they can only, I was just giving him little bits of information at a time in terms of what it meant and things like that.

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And then all the things lined up and so with the mammogram they’d seen something suspicious and then they sent me for an ultrasound. And I was just lucky that I had a senior ultrasound technician who realized that what she was seeing was just different than what she’s normally used to seeing. She wasn’t seeing a lump because I was diagnosed with mucinous cancer, which is a slimy cancer that sort of spreads and so you don’t get the lump. I did have another component to my cancer but it was a smaller component so it was very, very fortunate that I had an experienced ultrasound person who saw it. Because when I was sent to the breast assessment unit at the hospital, the radiologist at the time was going to try to do a biopsy and when he did the imaging he had a really hard time seeing what she was pointing out on her imaging.

So that’s when I was sent for an MRI (Magnetic Resonance Imaging) and then with the MRI lit up, my breast lit up like a light bulb because it was so diverse and so spread out. And then I had to go back for a biopsy and then at that point the radiologist had said, “What we’re doing now is trying to get the best biopsy so we can confirm that it is cancer and you don’t have to go through a surgical biopsy.” To try to miss one step. Which was hard at the time to hear, when you go in, but I sort of had a gut feel that there was something wrong anyhow so I did not know that this was going to happen like this so, I was alone. I didn’t have anybody with me I was just thinking I was going in for a biopsy. So I think that what I learned, is if you start going through this process you should have somebody with you at all times. Because it was really hard when he said, “Now we’re going to try to confirm that it is breast cancer.”

    • * MRI: Imaging test that creates a 3-dimensional picture of the body’s internal structures using magnetic force and radio frequencies.

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And so again it was me pushing to be referred to a lymphedema specialist to be able to try to get my arm under control and the thing that the physicians don’t understand which I’m working with the Lymphedema Association too. As I said ‘I’m kind of a quiet, shy reserved woman’; it is something the GP’s (General Practitioner) don’t understand. They don’t understand that it doesn’t really matter how many lymph nodes you take out, if those are the major lymph nodes that are clearing your system you can get lymphedema and if you stop lymphedema in a 0-stage or stage 1, you can reverse it and you can keep it under control. If it goes up to the higher stages then you’re going to have tissue damage and a whole bunch of other issues that are going to get you into trouble long-term. And this is a chronic thing but if you control it and you’re aware of it and you have the garments to keep the pressure down, or keep the pressure on and keep the swelling down then you can protect it from going to the next stage and so I think that there’s a huge opportunity in the healthcare system because that’s also when you come back from surgery. Two of the pamphlets I was given to do exercises were giving conflicting information in terms of when I should be doing the exercises and the type of exercises I should be doing and things like that.