Hi everyone,
I never imagined I would be writing on a breast cancer forum.
I am 42 years old, a wife and a mum to three children. On 10 June, my world changed when I was diagnosed with grade 2 invasive ductal carcinoma. My tumour measured 22 mm on mammogram and 32 mm x 16 mm on ultrasound. It is triple positive (ER positive, PR positive and HER2 positive).
My lymph nodes appeared normal on ultrasound, and my consultant told me that at the moment he considers this to be early-stage breast cancer. Because the mammogram and ultrasound measured the tumour differently, I had an MRI to look at the tumour in more detail and help plan my treatment.
I have been told I will need chemotherapy and HER2-targeted treatment before surgery.
Strangely, I feel like I have come to terms with the fact that I have breast cancer. What I haven’t come to terms with is the fear.
The fear of chemotherapy. The fear of HER2 treatment. The fear that the tumour won’t respond. The fear of recurrence. The fear of metastatic disease.
My consultant has explained why they want to give treatment before surgery, and I understand the reasons. But when I lie awake at night, my mind is filled with “what ifs”. What if it doesn’t work? What if the cancer comes back? What if my future is taken away from me?
I have a disabled husband who depends on me, and one of my children has learning difficulties, autism and ADHD. My family need me. They are my entire world.
I don’t think the hardest part of this diagnosis has been hearing the word “cancer”. The hardest part has been the thought of not being here for the people I love most.
Before this diagnosis I was making plans for the future without even thinking about it. Now I find myself wondering if I’ll see my children grow up, whether I’ll be there for the milestones that every parent dreams of seeing, and whether life will ever feel normal again.
Some moments I feel strong and determined to fight with everything I have. Other moments I feel completely broken by fear.
I know many of you have stood where I am standing now. If you have had triple positive breast cancer, chemotherapy and HER2 treatment before surgery, I would be so grateful to hear your experience. Did your tumour respond? How did you cope with the fear of recurrence and metastatic disease? Did things become easier once treatment started?
Right now I feel as though I am standing at the edge of a future I can no longer see clearly. I am hoping to hear from people who have walked this road before me and found light at the end of it.
Thank you for reading.
Hi @rihana
I’m sorry that you’ve found yourself here but I’m glad you’ve reached out on this forum
I was where you are 19 months ago, my world as I knew it turned on its head after attending my routine screening mammogram. The hardest part was telling my children. They’re young adults, my son had only been married for a couple of months and my daughter had moved to London and had just starting a training contract at work. I felt guilt for upsetting and unsettling them.
The diagnostic part was difficult, the uncertainty and waiting for results of further imaging and a changing plan. My MRI scan showed the IDC and DCIS was more extensive so I needed a mastectomy. It also flagged something in the other breast that wasn’t seen on the mammogram. Biopsies confirmed two areas of DCIS in that one. I’m grateful that it was found else I’d likely be going through it again in a few years. I decided that that one needed to go too.
Like you, mine was triple positive and I had chemo and targeted therapy prior to surgery. It wasn’t kind but it was doable. I did get a dose of Covid a month after the last cycle of chemo and 10 days before surgery. Antibiotics and antivirals sorted me out so I was well enough for the double mastectomy with immediate reconstruction. I wanted to wake up and not look too different. It is 51 weeks since my operation and I remain happy with my decision and pleased with the results.
Ours is a long treatment path. I found the HER-2 thread (link below) absolutely invaluable. Lots of sage advice, lived experience, friendship and humour. I was scooped up and supported. It will be a long read from start to finish but I found it so helpful to see those before me have got through the treatment and are able to look forward. At the beginning it felt unsurmountable but with the group of HER-2 ladies there for my ramblings and questions, I too have got through the mainstay of treatment.
X
Hi @rihana I’m new to this too and am waiting to start chemotherapy and HER2+VE treatment, so I don’t have the benefit of experience yet — but I wanted to say you’re not alone in feeling this way.
I’ve been trying to square up to the words “breast cancer” and have deliberately made myself say them out loud when I’m telling people what’s happening. But then at three o’clock in the morning everything feels completely different, and I find myself seized with anxiety about the future and where this is all going.
I’m hoping that, as we get further along the journey, the unknowns become a little less scary.
Sending you a virtual hug 
Not triple positive but have HER+ and (hopefully) have one further round of chemo before surgery.
I was beyond terrified to be told Ìt defiantly was. I could not cope. The wait between being told Ìt was and the rest of the extra tests was awful. Ihad problems from the initially prescribed chemo drugs but have a lovely oncologist who scooped me up, fought my corner with purchasing to fund the more expensive alternatives and who sees me before each and every round to help manage side effects and check if l am coping as well as l can. Lovely BCNs at the hospital have been compassionate and supportive putting me in contact with a cancer care charity that have provided me with trauma counselling and trauma therapy. (Cancer diaognosis ripped the box open of a whole heap of surpressed past hospital traumas) chemo nurses are also supportive, do what they can to help me feel safe and allow my DH in with me as a reasonable adjustment as he helps me to cope.
It is okay to begin to reach out to others and tbh I have only found it is those who are a bit further on who really get it. Took me two months before I could join this forum but l am glad l did now. I hope this can become a safe space for you too.
Thank you for your message.
I think one of the hardest things for me at the moment is that although I know I have cancer and I’ve accepted the diagnosis, there are still times when it feels like a bad dream. For a few moments I’ll forget, and then reality comes crashing back. I’ll see a hospital letter, think about my MRI, chemotherapy or surgery, and suddenly remember that this is actually happening to me.
I just want the treatment to start now because the waiting is so difficult. At the same time, the thought of chemotherapy scares me because I have no idea how my body is going to react to it. I think a lot of the fear comes from the unknown.
What breaks my heart most is that cancer doesn’t just affect me. It affects my whole family.
I have three boys, and all I want is to protect them from worry and fear. My husband is disabled, and I know this diagnosis has turned his world upside down too. I look at the people I love and realise that they are all going through this with me in their own way.
Sometimes I feel guilty for the worry and upset it is causing them, even though I know this isn’t something I chose and isn’t my fault.
Right now I feel like I’m living between two worlds. One part of me is trying to stay positive and focus on the treatment plan, and the other part is still struggling to believe that I am actually a cancer patient.
I’m hoping that once treatment starts, I’ll feel like I’m finally moving forward instead of being stuck in limbo with my thoughts. My consultant thinks im stage 1 grade 2 but will know abit more once they operate on me and they know the exact stage. If you ever need to talk im here for you. Fingers x we both and anyone else going through this heal very quickly and move on from this chapter in our lifes.x
Hi thank you for responding back to me, it means a lot.can you tell me what stage you were and if your cancer responded to the treatment.how are you doing now? X
Hi @rihana
I cant offer any advice as I am at an earlier stage than you and waiting more info on the nature of my cancer.
I juat wanted to reach out to you and send you my best, a huge hug and to say that everything you described resonated so much. Anything I can find to help with the psychological side of this nightmare I will send to you in case it helps you too.
Xxx
Hi
I’m doing well thank you. Now it’s the 24th of the month I can say that it is a year today since my surgery.
I have started a longer honest reply. Will finish it and send it to you x
Thank you.
Hi,
Thank you so much for your lovely message. It really means a lot to know that someone understands how overwhelming and frightening this can be.
I am very lucky to have a wonderful breast cancer nurse who has been incredibly supportive and reassuring. She has told me that my breast cancer is currently classified as early stage, which has helped ease some of my fears.
My ultrasound and MRI scans have not shown any lymph node involvement at present, although I know they won’t know for certain until they operate and check the sentinel lymph nodes. I recently had an MRI scan to look at the tumour in more detail, and thankfully it measured much smaller than expected at around 20mm. My ultrasound had measured it at 32mm, so that was reassuring news to receive.
Some days it honestly feels like I don’t have cancer at all. I feel completely normal, and for a little while I can forget about it and just get on with being Mum, going to work and looking after my family. But when I’m on my own at night and my husband and children are asleep, that’s when my mind starts to wander. The worries and fears creep in, and I find myself thinking about all the things that could happen and all the unknowns that lie ahead.
One piece of advice my breast cancer nurse gave me has really stayed with me. She told me to think of my life as a book. This cancer diagnosis is a chapter in that book, but it is not the whole story. There were chapters before it, and there will be chapters after it. Right now I’m living through a difficult chapter, but I will turn the page and reach the next one. I find myself holding on to that thought when the fear starts to take over.
Thank you again for reaching out and for your kindness. It really does help to know that I’m not alone in feeling this way. I wish you all the very best as you wait for more information about your own diagnosis, and I’m sending you a huge hug right back.
Take care 