Nikki's Inflammatory Breast Cancer Story: "I NEVER had a Lump" | The Patient Story

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I'm Nikki and I'm a mum of 2. I've got a little boy who's 7 and a daughter who's in her 20s so massive age gap. I'm also a teacher, which is a job that I love. Hobbies tend to revolve around outdoors. So lots of walking and exploring the countryside. I live in Norfolk, which is beautiful but I also love to garden. I love to cook and read as well. The very beginning was 2016 and I was breastfeeding my son and he was a son that I'd waited a decade for. We were told we couldn't have children. When he arrived he was a miracle baby. My daughter used to joke, it's like the coming of John the Baptist. He was a much treasured wanted baby and I wanted to do everything right. I was trying to breastfeed him and he wasn't putting on weight. I went to the doctor and asked her if I could have some help to increase my supply. She looked at my medical records and she said to me, I'm willing to help you, Nikki but I've looked at your medical records and there are lots of bowel complaints and IBS and stomach issues. Will you let me investigate further? I'd been going to the doctor for years and told it was IBS, to improve my diet and it would solve itself and it never had. That GP saved my life because she uncovered that I had a stage 3 tumor that was in my lymph nodes and my small bowel. It was a neuroendocrine tumor which is incredibly rare. I think it's 1 to 2% of cancers and it's often mistaken for IBS. Although it's very, slow growing my tumor was the laziest tumor in the world. They think that it had been there for years and years and we just ignored it or had been told it was something else. In a way, this treasured son actually saved my life because if I hadn't been trying to breastfeed him, the doctor wouldn't have done the investigations. I look at that now and think it was a baby cancer because all I needed was keyhole surgery. It was scary, particularly in those first few weeks after you get your initial diagnosis where you don't know how far the cancer has spread. It was scary and it was emotional particularly because I was diagnosed on my son's first birthday, which was just heartbreaking. I was really angry at the world for a very, long time. In terms of what I've gone through since it was a baby cancer because keyhole surgery and it was gone and I've been free of that cancer now since 2017 and I have yearly checks. You would think that would make me more likely to go to the doctor. But in August of 2022, I started to develop a pain in my right breast that went around mainly the nipple, but you're always told cancer doesn't hurt. so I ignored it. And I feel really silly that I ignored it, particularly because in my family there was a lot of breast cancer. If you go back 2 generations, that's how most of the women in my family sadly have passed away or they've had it, and it's been a factor later in life. I spent that summer holiday moaning about the fact that my boob hurt and my husband probably to shut me up, he Googled and he said to me, Oh, it's just a menopause symptom. that's what I wrote it off as because I had it in my head. There's no lump and there's pain that can't be cancer. this pain continued through the holiday and got really, sharp. Again, I thought maybe it's an ill-fitting bra or, your boobs do hurt when it's coming up to your period or just after. I found lots of excuses to ignore it and I feel really silly. Then, I think towards the end of November, that's how long I left it. I woke up and my nipple was completely inverted and I had a panic. I was supposed to be doing something big at work and I emailed work this morning and said, This has happened. I'm not coming to work. I'm going to the doctor. I went to the doctor and she said the same as me that there's no lump. She said, All I can see is the nipple inversion and that could be a cyst or something. I really don't think this is cancer, but I can see how worried you are, so I'm going to do an urgent referral. I went home and I felt a little bit silly, but I was also convinced that it was cancer. Within 2 weeks I think we're now into mid-December I had a whole day appointment at the hospital. The type of cancer I have is inflammatory breast cancer, so it does come with pain. It often comes without a lump. Usually, you also have lots of red rash on your boob, and I didn't have any of that. My only symptom to this day, has been the inverted nipple and the pain. So I had a mammogram, but that doesn't pick up my sort of cancer, which is why the risk is so high with my sort of cancer. So I had to have a CT contrast scan and I had a biopsy as well. The doctor who did the biopsy, he said Do you want to know? He said, I don't like knowing things that you don't know because it's your body. It's cancer. We didn't know it was inflammatory, although I think he did know because another symptom is that you get almost what looks like cellulite like sort of that kind of texture on your boob. I mean, I'm a plus-size woman of 47. I have cellulite and other places of my body, so I didn't think anything of it but he pointed that out to me. And that's another symptom of inflammatory breast cancer. So he said to me, I can't be 100% certain, but looking at what we're taking out of the biopsy, he said, I want you to know that I think it's cancer. and my whole world just fell apart because I was scared, but also haunted by guilt because, you have this after your initial diagnosis, you have a few weeks where you don't know how far spread it was. I had read enough and think that it was inflammatory breast cancer before anybody told me. And I knew that it was super aggressive. I knew that most women who had it had cancer somewhere else. I knew that the survival rates were scary. You shouldn't Google them. Of course I had. And just the guilt that by ignoring something, I could possibly leave my children and husband without a mother and a wife also thinking to myself how stupid are you that you've had a cancer? You should be better at this. You should have followed it up. I have been incredibly lucky in that it has not spread anywhere else. Whenever I've shared these feelings with the cancer team, they have said to me that your symptoms were so slight that actually you did really well to get it picked up because you were so insistent. but my whole world just fell apart that day. I was with my husband. When they told me there was the surgeon who was doing the biopsy and there was a nurse. I think the nurse picked up that I'm not really into kind of physical affection from strangers. If people hug me, I'm like, Oh, God, get off me. As the doctor told me that it was cancer, she said to me, Do you mind if I hold your hand? She gently stroked my hand and I had tears rolling down my face. But she kind of knew that I wouldn't want her to wipe the tears away. That was me processing it in the room and my mind just went to really dark places. I then told my husband immediately because he was, in the hospital with me. He let immediate family know because telling people was the thing that I found hardest. As selfish as it sounds, I don't want to have to deal with your reaction because I've got it all going on in my head. When you tell someone, you have to deal with their reaction, and I totally understand that. But for the first few months, I couldn't tell people Work. I just did a very flat email. With my son. We took some advice because I didn't know how to tell him. He's 7. He was 6 back then and he's not a particularly mature age 6. My nurse gave me a book, that's called something like Mommy Has a Bubble in Her Boob, and that's how we explained it to him. We said that, Mommy's got a bubble in her boob and it's making her very tired. It's going to make her hair fall out, because that's the thing they notice. I was going to be tired for a while, but then she's going to be okay. We let his school know and I let them know that it was aggressive and that it was unsettling the family, and we were going to be struggling with homework and that just us functioning as a family was enough. We couldn't do all the other stuff. But he seems to have handled that quite well. We haven't used the "cancer" word in front of him because he doesn't understand the word. Then I was sent to another specialist, who was really guarded and he wouldn't answer many questions. I said to him straight away, I've Googled. This is inflammatory breast cancer, isn't it? He said, We can't say that until we have all the information. I respect that, but at the time I found that really frustrating. Then they collect information from all the scans properly, and I had a letter very quickly actually within a, few days that confirmed that it was inflammatory hormone positive, in my lymph nodes grade 2, and they laid out what my treatment plan would be. I was told that because it's aggressive they have to get it as small as they can before they do surgery. So I don't have a single lump. The cancer is diffuse through my breast. That makes it harder to treat when it's harder to see, but to it can be really, tiny. Initially they said 6 rounds of chemotherapy I had, which is known as the Red Devil for 3 rounds. I didn't find that that bad. Then I've had 4 rounds of docetaxel which I found really hard. They gave me a seventh dose because although I'm currently no evidence of disease, because the cancer is so tiny that it is likely to be there and said because we know it's battling the cancer we might as well do it again. So I've had 7 rounds of chemo and then I have recovery time. Then I'll have a single mastectomy. I won't have a reconstruction for at least a year because the surgery can make the cancer angry. And so they want to make sure before they do anything else that it's cancer free. You don't want to rebuild the breast and then find the cancer is in there. After surgery, I'll have recovery time and hopefully within about a month I will then have radiotherapy, which will be every day for 3 weeks, and then I will be on hormone therapy for years after. They've said to me they're really confident that the cancer is going to go so a lot of what we're doing now is about making sure it doesn't come back because it's got a high remission rate. I am incredibly lucky because, as I said for most women, it's gone somewhere else. And I've had 2, maybe 3 PET scans. And again, there's no sign of cancer anywhere else in my body. So, Nikki, going back to the treatment what was the side effects that you went through? I've had so many so with EC, I completely lost my hair after the second treatment. I think it started to go within 2 weeks of me having the first chemo. And I'm quite vain. I had sort of silvery gray hair that I was incredibly proud of because I thought it was a bit of a feminist statement. I stopped brushing my hair and my husband used to laugh. Everywhere I went. I left hair behind me and I was like Look, I'm keeping a hold of my hair. And I wasn't I just wasn't brushing my hair. So none of it was coming out. I went to the hairdresser for a chemo cut and she cried. I didn't cry. She did because so much came out in the sink. I then took control and shaved it and that made a massive difference because my head was sore. But it's also really distressing to lose your like I'd have a bath and it would all be in the sink. It was just horrible. So that would be a recommendation to me to shave it. Even if you do what I did where you get a really short chemo cut and then you shave it 2 weeks later. I don't think I could have gone from quite long hair to shaved. In terms of my eyebrows. I didn't lose them until I started docetaxel and I thought I was going to keep them, but docetaxel saw the back of those. With EC, It was mostly nausea and tiredness, but not much else Docetaxel that's a complete other beast. I've had what they call hand and foot syndrome. I'm on top of it now because I'm taking a steroid cream, but basically your hands peel and blister as your feet and get really, sore. There was a time when my feet were covered in blood blisters. It made me not want to walk and then you walk funny. You walk on the side of your feet and then that blisters the side of your feet. I wish I'd told the oncologist about that sooner because they gave me hydrocortisone cream which sorted my hands. My feet haven't been too bad this round. I kept on top of that, though. My husband bought me a foot spa so I would ease the pain in my feet. I had foot creams and balms that softened my feet. If I did that every day, I could just about keep on top of it. But when you're tired, it's quite hard to keep up that sort of routine. I haven't lost my nails. I've still got them. My top tip that my oncologist told me was to paint your nails a dark color. so I haven't lost any. I've done the same with my toenails. as well. It makes you look, feel better when they look nice. My nails are very sore at the moment, so I'm hoping I'm going to keep them, but I am a little bit worried. I also have really bad pain in my bones and part of that is to do with the injections I have to boost my neutrophils because your immune system takes a real dive after chemo. I take an antihistamine, which is Claritin every day. That helps. I also take codeine. I try only to take it in the evening because it makes me sleepy and drowsy and it also makes me feel a bit nauseous and the chemo makes me nauseous. I have learnt that there will be 3 or 4 days where I have to be ahead of the pain and I take the codeine 4 times a day. But for the rest of the difficult bit of the cycle, I try to take it before bed because it helps me sleep. My sleep patterns have been ruined by steroids and pain at night. I have such a long list. I also have, constant pins and needles in my hands and feet. I think that's to do with the hand and foot syndrome. when your feet are really cold and they hurt, that's what it feels like. So I have an electric blanket that I put at the bottom of my bed I think that helps a little bit. There were days I struggle to get out of bed and get dressed. There are days when I can't walk more than 100 yards. My temperature is all over the place. I think that's menopause. Because my cancer's hormonal, they were worried about it jumping to my ovaries. So I've been plunged into. early menopause. so I've got really bad hot flashes. If I do anything, my temperature goes up and I'm supposed to go into hospital if my temperature goes up. But I've learned to just wait before I take the temperature. That keeps me awake at night and adds that tiredness. It's a long list. I have the most awful taste in my mouth all the time. I brush my teeth obsessively because my teeth feel odd and you can get a special it's called difflam, a special mouthwash that prevents mouth ulcers, but the corners of my mouth crack. So, if I have a sandwich, I have to make this sandwich really flat because I can't open my mouth very wide to eat it. And I have lots of boiled sweets just to take. It's like a metallic taste, a bit like morning sickness So going through all of this have you seen an impact on your relationship between you and your partner? He's been wonderful, but he's found it really hard. You know, he had a I hope he still does, but he had quite a formidable wife, you know, who had a very full life and had lots of hobbies and was very into her career. And and he's watched a lot of that spirit drain out of me. And I was also very independent. And I've become dependent and I don't like that. And he doesn't begrudge helping me, but I think he doesn't like that because that wasn't the kind of wife that he married. So we found it hard. I think there's sort of this sort of fairy tale that, you know, illness brings couples closer together. I'm not quite sure that's true. It's it's tested our marriage and we will survive because we love each other a lot. So it's been it's been really hard. And also, nobody asks after the partner. They do ask after my children. They do ask after me. Nobody asks how he's doing. And also he's you know, he's working full time. But, you know, on my bad days, he's cooking all my meals. He's tidying up. You know, he's doing more for our son. You know, he's, you know, stuck with me if I'm crying in the night and then getting up in the morning and and doing a full day's work, it's been really it's been really hard. So I think we need to get better at supporting the partners of people who who have cancer. I try to take my husband to my appointments with me because he will remind me. Or if I'm not feeling very brave, he will say, Nikki, there was a question you wanted to ask. Why don't you ask it? Because sometimes you do feel overawed by doctors. I've also joined on Facebook. There's an inflammatory breast cancer network that I think is mostly women in the UK, but they have representatives from the inflammatory breast cancer charity, and so being able to ask them questions has been useful. And sometimes just seeing that other women are having the same symptoms as me makes me feel a bit braver to then say Actually, I'm really struggling with this, can I have some help? So for example, when there was a delay with my chemo, I said, you know, is this an unreasonable delay? And they said, Yes, there is. And kind of linked me to research papers or articles that I could then go back to the oncologist and say, you know, I've looked this up and I've read this. You know, this isn't just a quick Google and I think I should be having chemo quicker. And I've done the same with radiotherapy as well. I've let them know that I have researched this. And I do want to say that no one's deliberately delaying treatment, but because my cancer is very different from other breast cancers, I think you do have to keep reminding people of that. We know our bodies and I knew back in August that there was something wrong and I should have pursued that straight away. Although looking for lumps is important I think we need to get rid of that narrative of lumps and no pain and then going to our doctors and being quite insistent because again, it's my second rare cancer. When I looked up inflammatory breast cancer, when I saw it was 1 or 2% of people, I thought to myself, well, I can't have another rare cancer. It's like I'm winning the cancer lottery. That's another message that cancers that are rare, someone has to get them. I have checked and they're saying that there's no link between the 2. I'm just incredibly lucky. unfortunately, we have to educate ourselves because when you meet a GP or even an oncologist who doesn't specialize in inflammatory cancer, we have to advocate for ourselves more than we should I do that in my appointments where you have to act really fast with this cancer because it's aggressive. When I've had to wait longer for chemo than I wanted, I did question that. And the same where I'm worried that my gap between surgery and radiotherapy is going to be longer than it should. I've questioned that already and raised it as a concern. We, unfortunately, have to educate ourselves. You know, I learnt from not going to the doctor when I should have done that. I regretted not speaking up. And so that's inspired me to speak up and ask questions. Well, I think even looking for a lump, I don't think we really know how to do it. But my oncologist showed me and said, was that how you would do it? Because she said to me, did you check your breasts? Nikki? And I went, Oh, yes, because I did. And so she showed me how to do it. And she said, Was that what you did? And I went, Yes, thinking, no, you know so it takes you know, it's a lot more of a thorough process than than possibly we do it. So, for example, she said to me do it both lying down and sitting up whereas often we're told to do it in the shower. Well, we don't lie down in the shower, do you? Um, so I think we just need to be more relaxed around our bodies and look at our bodies. So yeah, more education I think. Um, and education about non-typical breast cancers because although they're more deadly at the moment. And it was very focused around the nipple. It wasn't I had time for my whole boob felt a little bit achy and that might be the menopause period kind of feeling. But I think if it's a pain that's focused on the nipple, I think that is one that I would take very, very seriously. The other thing that happened is your nipple can change color and mine had slightly, but because I didn't pay much attention, I hadn't noticed that. But again, when the oncologist did a physical exam, she said to me, Can you see that one is a slightly different color? Nikki? And so anything that just doesn't look quite right we need to take seriously. I think just to listen to your body and do do what works for you, not what you're told to do. So, for example, I've kept on working through most of my treatment, um, which I know is something my husband hasn't really agreed with, but I know that that helps me remain mentally strong. And so I think we know ourselves and we can, within reason, navigate a path that works for us. And what works for one person doesn't work for another person because their cancer will be different or their job will be different or their lifestyle will be different. So I've possibly done things in quite an unorthodox way, but I wanted to prioritize my mental health as well as my physical health. And I think now I'm almost at the end of my chemo journey that I made the right decision. Scanxiety is awful. I know you're told not to Google, but we're human, and you do. So I would say to remember that the advancements in cancer over the past 3 to 5 years have been huge, particularly with inflammatory breast cancer. So if you're looking at something that's more than 3 to 5 years old, clothe it, go to reputable sites like Macmillan or the Inflammatory Breast Cancer Network because we are going to look for that information. So go to a reliable source. Um, that's how I cope with Scanxiety and I try to plan some nice things. Surgery worries me. It's big surgery that I'm having and also I'm having a bit of my body removed that I'm quite attached to, and I don't think I've quite dealt with that yet. I have booked some counselling because I think I'm in denial about how hard that's going to be. So I think having someone to talk to who is someone I don't know that I can be really honest with, I think possibly is going to help me process that a little bit. I just think to try and find joy as daft as it sounds, because it's not going to harm you and it might help. I'm not a very woo woo person at all, but I think that when it comes to sort of laughter and joy, I try to find a little bit every day. So, you know, whether it is you know, I often sleep in the hammock, in my garden in the sunshine, and that's better than sleeping in my bed because I can hear you know, the birdsong and I get some fresh air or I try every day to save a little bit of energy to do something nice with my son. So we do lots of arts and crafts and baking and often, you know baking with a seven year old, something is going to go wrong. And so it's funny. Or making time to chat with friends and laugh and do inappropriate humor. I think doing fun stuff. So you're not just an ill person I think is really, really important.