Hi everyone,
This is my first post here, and feeling slightly nervous about not wanting to come across ungrateful as I know everyone is struggling here.
I’m writing on behalf of my mum who was diagnosed with Breast Cancer in May - grade 2, stage 1, HER 2 negative & they said it is estrogen dominant. She is 50 and this was all a complete shock to us as it is with everyone as we have no history of it in our family either.
She had her lumpectomy 4 weeks ago, and we had her results today. Thankfully there is no spread to her lymph nodes but they have found more scatters and another smaller lump, plus her original lump was bigger than they thought by a few mm. I know this sounds like good news but we’re struggling to see the light at the end of the tunnel - I think from all our conversations with the doctors/BCNs, we were expecting to be told it was radio next and then it would be over. They’re now saying they recommend she has either another lumpectomy with radio or a mastectomy. We explored a mastectomy at the beginning however we were told there were no reconstructions possible due to covid, which felt too difficult for my mum to deal with at that point.
My mum has a long history of mental health issues, and her diagnosis has really made her spiral into difficult thoughts which I know everyone experiences, but seeing her mental health manifest in new ways is really scary as her daughter. We’ve asked if it’s possible to a) have immediate reconstruction (which they said might be possible with an implant), and b) if we can opt for a double mastectomy.
The doctor said this most likely wouldn’t be possible (double mastectomy), but I think I would really like to try and request this for her. I’m really conscious that you ladies are suffering with the same, but I am seriously worried for my mum’s quality of life & mental wellbeing and I do not want the worry of her other breast to continue triggering her OCD & anxiety.
I wanted to reach out if anyone had ever successfuly managed to have a double mastectomy? We have no history of BC in our family so I know that doesn’t help either. I just know she will never recover from this until they’re both removed.
Apologies in advance for the long post & I really thank you all in advance
xxx
Dear @June2021
Welcome to our Forum - I hope you find the support you need here for both you and your mum.
I am sorry to read she is going through a difficult time, and I wonder if speaking to someone on our nursing team would help provide some reassurance to your family. You can reach our team on freephone 0808 800 6000 (Mon-Fri 9am-4pm; Sat 9am-1pm). Our team is friendly, non-judgmental, and go at your own pace.
The number is available to anyone - not just the person living with cancer… so anyone in your family can call if they need to chat things through.
We are sending you the most positive vibes x
Bernard
Hello, sorry to hear your mum is in this position, thought I would offer the same advice I was given following my diagnosis and treatment plan. I had a recurrence in the same breast and my only option was to have a masectomy as I had previously had radiotherapy. I was offered an immediate reconstruction by my consultant and told it would just be a matter of a few weeks wait and that I would be given a date, when I saw the plastic surgeon. Long story short, the plastic surgeon said he could give me the reconstruction I wanted (diep flap) as I did not want anything artificial in my body, but not immediately, I would have to wait for a few months, obviously I didn’t have a few months to wait! he offered me a temporary Expander in the meantime, something I had stressed I didn’t want. So my options were remain flat or accept the expander, I knew I wouldn’t be happy with those. I rang the help line on this forum and they told me to speak to my GP to see if they could refer to me another hospital or speak to Patient Advisory Liasion Services at the hospital (to stress the concerns for your mum). In the end it was my breast Cancer nurse who escalated my situation to the Multi Disciplinary Team and the Clinical Lead of plastic surgery picked it up and everything changed for me. He rang me and apologised for the additional stress I had been placed under as this had been going on for a month. I was given a date and had my surgery. Don’t feel you can’t ask for what you want and what your mum needs, she’s just as important as everyone else going through this horrendous disease. I truly hope you get this sorted, big hug to you and your mum x