June's Story: What Breast Cancer Has Taught Me
June Lee is a Breastcancer.org Community member in Rugby, Warwickshire, United Kingdom.
My diagnosis
It’s likely in our lifetime we will all be touched by cancer whether it’s ourselves or loved ones. I had breast cancer 18 years ago and the big C returned in January 2023. I was first diagnosed in April 2005 with ductal carcinoma in situ when I was 43 and had a lumpectomy and radiotherapy. I needed no further treatment just yearly follow up and mammograms until I was discharged after 5 years. When I was first diagnosed I found a lump, but my diagnosis wasn’t from the lump. I felt a lump in my right breast and after a mammogram they found early signs of cancer in the left breast, nothing in the right breast where I had the lump which shocked me as I expected something abnormal or cancerous in the left breast where I felt the lump.
In January 2023 after a routine mammogram and biopsies I found out the cancer had returned in my left breast and spread to the lymph nodes. I decided at the time that I would be open and share my cancer journey. I felt talking about it and sharing my experience would help me and others and I wanted to spread breast cancer awareness. I think it’s important for women to go for their routine mammogram when invited and also to check their boobs regularly. I wanted to show people that you can live a normal life having breast cancer and there is light at the end of the tunnel.
My treatment
The initial course of treatment was a left mastectomy but after biopsies, scans and tests they found the cancer had spread to the lymph nodes, so they treated the cancer with chemotherapy over 6 months. The rationale behind this was to shrink the cancer and stop it spreading and then do a left mastectomy with removal of all the lymph nodes after the chemotherapy finished.
I had six months of gruelling intense chemotherapy which has been physically and mentally draining. The chemo was tough, but I was tougher! I suffered with unpleasant side effects such as weakness, fatigue, bone and joint pain, headaches, sickness and nausea, loss of hair, loss of taste, peripheral neuropathy in my feet and hands, digestive problems, etc. Food and drinks tasted really weird and strange when I was on chemo and it got worse. I suffered with something called "chemo mouth." When you're on chemo, the drug in the saliva affects receptor cells in the mouth responsible for taste. Some foods taste salty, bitter, sweet or like vinegar and disgusting! I love spicy foods like Mexican and Indian, but I couldn’t eat it. I could only eat plain bland food.
I lost my appetite and lost a lot of weight. I couldn’t eat much because everything tasted so awful, but I drank plenty of water and ate small snacks that I could tolerate. I ate watermelon which I found refreshing and pineapple which helped with sickness. I suffered with dry mouth and mouth ulcers and used a natural toothpaste, soft toothbrush and biotine mouthwash which helped. I developed "chemo brain" which is brain fog which affected my ability to focus, concentrate and memory. It was great that I had my husband with me at all my appointments to take in information and remember things as I forgot things easily. I am still having symptoms of chemo brain.
My veins became very fragile from weekly blood tests and chemo. In the last few weeks of chemo it became hard for them to find veins and it took several attempts of prodding my arm or hand with needles before they found a good vein. I was tired all the time and just wanted to lie down. I became very anemic because of the chemo and diet and needed iron infusions and a blood transfusion before surgery.
I tried the cold cap treatment, or "scalp cooling" as it is commonly known, initially for two sessions to see if it could help save my hair. Cold cap treatment is a hat filled with freezing cold gel that is worn on the head. The cooling effect reduces blood flow to the scalp which reduces the amount of chemotherapy medication that reaches the area and helps to prevents hair loss.
I found the treatment extremely uncomfortable, freezing cold, painful and it added another 1- 2 hours on the chemo which was already 2-to-3-hour sessions. The hat is fitted very tight on the head and I experienced severe headaches. I decided I would rather lose my hair than go through the distressing unpleasant cold cap treatment before each chemo cycle.
I talked to my surgeon about have my right breast removed as I was worried the cancer would come back and hated the thought of going through endless hospital appointments, tests, chemo and possible surgery again. My surgeon was reluctant to operate on the right breast which he said is healthy. He said that the priority is to treat the cancerous breast and leave the healthy one. My surgeon reassured me that the risk is low of the cancer returning, but I know there is always a risk of it returning especially as I have had it twice. I was apprehensive, anxious and nervous about having the surgery, but I also felt relieved and "happy" to be having the cancer boob removed. I wanted to be rid of the horrible cancer.
I had a mastectomy 5th September 2023 and all my lymph nodes removed. I was absolutely dreading it, but it wasn’t as bad as I thought it would be. In fact the surgery was a lot better than the chemo which I thought was going to kill me! I was in a lot of pain and extreme discomfort after the surgery, but they gave me morphine which really helped. I was only in hospital overnight. I went home with a drain, but it was okay and easy to manage. They gave me a cool drain bag to pop it in. It was uncomfortable sleeping with the drain in and also I had to remember to carry it around with me.
I used a big V pillow for sitting on sofa and sleeping and also have a nice heart-shaped mastectomy pillow which is brilliant for support under my left arm. I took paracetamol regular and codeine when I needed it. I took it easy at the start and rested, but went for short walks every day. I did my arm shoulder exercises three times a day and I am still doing these regular during the day.
I am currently having three weekly appointments for Phesgo injections which works in people who have cancer with high levels of HER2 and locks on to different parts of the HER2 proteins. It blocks the receptors and stops the cancer cells dividing and growing.
Things I have learned from having the big C
Here are some of the things the big C has taught me:
Cancer doesn’t have to define you.
Every day is a chance to create a memory and to love a little.
Don’t give up. Every day is worth it.
There's always hope beyond what you see.
Being positive is the best medicine you can take.
It can always get worse…but it can also get better. And more often than not, it does.
Cancer has taught me what it means to be loved. I mean really loved by someone…through thick or thin. My husband, grown up kids and family are my world and all my beautiful friends and you beautiful wonderful souls mean so much to me.
Cancer taught me that bad days are your choice. You always have the option to change your attitude. And if you can do that, you can do anything.
Never waste one second. Treasure every single precious moment you can because you never know how many you have left. Life is so short!
Cancer taught me what it means to be strong. And you will never know how strong you are until it’s your only option.
Cancer taught me the definition of fear. Nothing I do in my life or will ever be scarier than where am now!
Cancer taught me the definition of happiness. Wanting more and always striving for what’s next will never compare to what you already have. Nothing will ever make me happier than a healthy life with my husband and family.
Cancer taught me that no matter what is taken from you on the outside, it can never change who you are on the inside.
Life is not a given. Every single bad day is so much better than no day at all. Feeling sorry for myself will get me nowhere.
Cancer has taught me to keep my faith and keep praying.
Challenges and support
The past six months have been tough and challenging. I still have a bit of a way to go with my C journey. At times I felt like giving up, but I’ve tried to keep strong and positive. My strength and positivity come from my faith, love and support of my family and friends and people who have followed me in my C journey and inspired me to keep going. I am thankful and feel blessed to have had such amazing support.
I’m an active person but I had to slow down especially with the chemo and after my operation. Which was hard. I suffered with extreme fatigue and tiredness and couldn’t do much and slept a lot. I got breathless and tired easily and couldn’t walk far. My husband has been amazing and supportive and did all the shopping and cooking, also my daughter who lives with us. They were both great after my operation and helped me with washing and getting dressed as I was unable to do this on my own. I could barely move my left arm after the surgery and couldn’t raise my arm or bend down low.
The breast care team was fantastic, and I had a named nurse on the end of the phone if I had a question. She was brilliant and I phoned her several times for advice and information. She also kept in touch with me and phoned me often to monitor my progress. Also I was given a red card with emergency telephone numbers to contact any time if I needed advice or became ill. There is a risk of neutropenic sepsis with chemotherapy treatment and I needed to monitor my temperature regularly and phone if my temperature became too high or low or I developed any severe side effects or symptoms. I used this number several times when I experienced severe symptoms and on one occasion after my husband phoned for advice when I became very sick and poorly they advised him to take me straight to the hospital. I was seen very quickly there, and they kept me in a comfortable private room all day, monitored me and gave me intravenous antibiotics as I had an infection.
I have been sharing my story on social media and friends and people have been amazing and supportive. It has helped me to cope, given me strength and reassurance and inspired me.
How to cope
Cancer is a challenge, regardless of who you are or what you do. It affects every part of your life. I've tried to be positive which at times has been hard especially when I’ve felt so sick and poorly and unable to get out of bed or do anything or had a meltdown.
My advice for others is to take things slowly -- there is no rush. Listen to your body and rest, sleep when you can. Eat healthy and drink plenty of water. Keep positive thoughts in your head. Talk to people, your family and friends. Read information and don’t be afraid to ask questions. My husband has been my rock and came with me to every appointment, tests and scans. It’s great to have someone to go with you to appointments to listen and remember what health professionals say to you. Sometimes I’ve been overwhelmed with information and I also have difficulty remembering things.
I found writing about my C journey helped me. I also wanted to help spread breast cancer awareness and did frequent updates on social media -- the importance of mammograms, self-checking boobs, etc. I’ve also posted updates about male breast cancer too as some people may not be aware men can get breast cancer in rare cases. It usually happens in men over 60 but can very occasionally affect younger men.
I did a few preparations pre-op to get things ready so I would be comfortable after my surgery. I bought some front-fastening bras which would be easier to put on than back-fastening ones.
I prepared some nightwear and clothes that would be easier to get dressed in like loose comfortable lounge wear and front button opening shirts. I moved drawers around so it would be easier to access items in the bedroom and kitchen.
I bought a shower chair which was a Godsend to sit on [in] the bath. I couldn’t get the wound wet, so it was easier to have a wash using a handheld shower hose. My husband or daughter would help me in the bath as I was unable to do this on my own for the first week and helped me with dressing and putting my anti-embolic tights on, which I needed to wear in the first few weeks. These apply compression to the legs and can prevent blood clots post-surgery during long periods of immobility.
I stocked up on facial wipes, baby wipes, fragrance free soap and shower gel, and toilet moisture wipes, paracetamol and other items I thought I would need. I did not shower initially and used a large wet sponge for my face and body and wipes to keep me fresh and clean.
I organized a charity fundraiser to raise money for Breast Cancer Now. The event was a music, singing and sensory play session for families with children, and I organized sensory play activities with [a] breast cancer theme, face painting, tombola and a book sale. I also provided afternoon tea with cakes, treats and hot drinks . I did some singing with the children with my guitar, puppets, instruments and the parachute. I had family and friends who helped with the event which was great. The charity event raised £211 which was brilliant.
My JustGiving page for Breast Cancer Now raised £1,211 which is amazing. The Rugby Advertiser wrote an article about my event with a photo of me and one of the children that came to the session which was amazing. I am very passionate about working with people and love helping others and wanted [to] raise money for Breast Cancer Now from my own experience of going through the big C. I also wanted to show my appreciation for the wonderful care and treatment I have received by raising some money for charity. I chose Breast Cancer Now because they are a fantastic charity that does valuable research for breast cancer and offers a wealth of support and services for cancer patients their families, careers and health professionals.
My thoughts and feelings
I wasn’t too shocked when the consultant said the cancer had come back as my husband and I had prepared ourselves it may be bad news although we wanted to think positive. I did shed a few tears and felt scared and anxious about having surgery. The consultant initially said I would need a left mastectomy which I accepted fairly quickly and tried to keep positive, then after further scans he said the cancer had spread to the lymph nodes and I would need chemotherapy. I found this very daunting and was more worried about the side effects of the chemotherapy than the surgery, but I knew I needed it and there was nothing I could change. My wonderful consultant Mr. Alomishy held my hand and said that he would look after me which was very reassuring and comforting and I felt I was in great hands.
I'm so pleased and thankful I went for my routine mammogram and always encourage friends and people to. I’d say, "Always attend routine mammograms as they can save your life." My message is: If you are invited for [a] mammogram, please go. Also, if you notice anything unusual, get it checked out and see your GP or nurse practitioner.
I was initially worried and anxious about losing my long curly hair and found it upsetting when clumps of my hair started falling out. I dreaded the thought of becoming bald, but I tried to keep positive knowing that it would eventually grow back. I eventually lost all my hair, eyebrows and eyelashes which I initially hated. I had long eyelashes and loved wearing mascara, but I wore lots of eye makeup like eyeliner and eye shadow to make myself feel feminine and "pretty." I bought some pretty headscarves and funky wigs that gave me more confidence and boosted my self-esteem. Chemotherapy has been brutal, but I feel lucky and blessed to have been given such amazing, powerful treatment.
I felt very emotional and overwhelmed after my mastectomy. I thought I would be happy and relieved, but I didn’t feel this. I didn’t cry or feel sad although deep down I may have felt a sense of loss from losing my breast. I think it took a while to process things and I’m still trying to come to terms and accept everything.
Life after breast cancer
Life after breast cancer means returning to some familiar things and also making some new choices. I have looked at ways to improve my health and diet and lifestyle and reduce stress. I run my own business running music, movement, singing and play sessions for families under 5’s. It is very physical and demanding and I have been unable to run sessions during my treatment. At the moment I am taking time out to recover.
I am trying to keep positive and focus on looking forward to getting better and looking forward to getting back to a bit of normality and enjoying life . It’s been a bit of an emotional and bumpy roller coaster and I have spent most of the last year in [the] hospital having chemotherapy, weekly blood tests, scans, hospital appointments, etc.
I am awaiting the results from my surgery to find out the next steps with my treatment. I am hoping and praying that I won’t need further chemotherapy. I have decided against breast reconstruction as I do not want further unnecessary surgery and I’m happy to have a fitted prothesis. I feel for me this is the right choice but for others I understand they may want reconstruction for their own personal reasons. I’m looking forward to getting a beautiful tattoo over the mastectomy scar in a few years when it has completely healed.
I am four weeks post-op now. My chemotherapy stopped seven weeks ago. My taste has gradually come back, which is a big relief. I was worried I wouldn’t get my taste back. Apparently it can take a long time for taste to return after chemotherapy. It is wonderful to be able to taste and enjoy food again. Some foods still taste a little strange, but I have got a lot of my taste back. My hair and eyebrows are starting to grow back, which I’m really happy about. I’m looking forward to seeing how my hair grows. I am getting stronger each day and my left arm movements are getting better and I can raise my arm above my head. I will continue to do my daily exercises three times a day, which are important to keep the arm mobile and help prevent lymphedema which can be a serious complication after a mastectomy.
I’ve been using the time while I am not working to declutter and have sorted out unwanted clothes and things for charity and have been selling clothes on eBay and Vinted. I’ve started to do light chores around the house, cooking and baking. I’m not driving at the moment as my breast care nurse advised against doing this yet as I am experiencing a lot of pain in my left arm. I get tired easily and rest when I’m tired and have short naps when I need it. I go for daily walks which helps to keep me active and increase my energy, boost my mental health and well-being.
I will have an appointment with my consultant in around one month to find out the results from my surgery and further treatment. I am hoping and praying that I won’t need any more chemotherapy. I will continue to have three weekly Phesgo injections for one year. The surgeon said I will be given hormone therapy for five to ten years to help reduce the risk of the cancer coming back. This will be discussed in my next appointment. My big C journey isn’t over, and I will continue to have regular blood tests, scans and appointments at hospital.
I’m really excited to have booked on the Moving Forward course with Breast Cancer Now. This is an online course to help people move forward after breast cancer. The course sounds fantastic and covers mental well-being, diet and exercise, lymphedema, recurrence, adjusting and adapting after breast cancer. I’m hoping the course will help me feel more empowered and in control and help me with my recovery, healing and life moving forward after cancer.
I hope that by sharing my story it will help anyone going through cancer and show it is possible to regain your life and be a breast cancer survivor and warrior. Cancer treatment and survivorship has come a long way.
