Webchat with experts from Breast Cancer Care - Friday 12 May, midday - 1pm

[RachelMumsnet]

We’re running a webchat on Friday (12 May) lunchtime (midday - 1pm) about breast cancer with two experts from Breast Cancer Care, who are one of our guest charities in May.

During the hour Rachel Rawson, Senior Clinical Nurse Specialist at Breast Cancer Care and Jane Murphy, Clinical Nurse Specialist at Breast Cancer Care will be on-hand to answer all your questions - from diagnosis, supporting someone who has breast cancer - to living with and beyond breast cancer.

Join us on Friday (12 May) at midday and if you’re unable to join at that time, do post your question in advance on this thread.

One person every 10 minutes is diagnosed with breast cancer in the UK. While survival has doubled in the last forty years the overwhelming effects of the disease can be long-lasting. More people are diagnosed and living longer with breast cancer than ever before and NHS resources are stretched.Breast Cancer Carehas information and support to help people move forward from breast cancer with confidence.

Rachel Rawson joined Breast Cancer Care in February 2007 after many years working in the NHS as a breast nurse specialist. She has a specialist interest in breast cancer and family history and writes widely on the issues that affect women and their families and friends after a diagnosis of breast cancer.

Jane Murphy is Breast Cancer Care’s lead on primary breast cancer. She directly supports the Helpline and Ask Our Nurses email services, calling on more than 10 years’ experience of providing information and support to people affected by cancer.

brilliant thread!

I have something wrong with my right breast. It has become inverted and has been like this for a while.

I also get a pain in my right breast, it's as if I can feel something spiky or burning slightly. It's very hard to describe.

I had an ultrasound on my breast that lasted 20 seconds and the nurse said all looked fine but I'm not convinced.

Have you made much progress with your 'Secondary, not second rate' campaign? I am in this position and definitely feel like a second rate patient when it comes to treatment, like I have been just tossed to one side. I was basically given a few months to live and told that nothing more could be done. After doing my own research and paying for a private biopsy I found that there were actually treatment options available to me through the NHS. I am now having treatments which will hopefully prolong my life but I worry what would have happened if I had accepted what I was told.

I would like to know how much lobbying BCC does to ensure that patients receive care as laid out in NICE/SIGN guidelines. From being on forum threads for the last few months it is clear that patients' experience of services varies wildly and is often lacking key elements. One example is the provision of physiotherapy following breast surgery. Given the importance of physio in regaining mobility and being able to return to normal activities it seems shocking to me that many women appear to receive no more than a chat and a leaflet. The forums are full of women with chronic pain and mobility problems following mastectomy/ANC. This is major surgery with serious consequences and yet seems sometimes to be a bit of a conveyor belt with day-case mastectomies etc.

I've been wondering if there is any way to highlight the struggle many women have with Tamoxifen side effects? It sometimes feels like a well kept secret! I was certainly not warned by my Consultant or breast care Nurse about the potential effect on my life (and my family) from taking Tamoxifen .
Could BCC raise awareness of the side effects and ways to help manage them?

I agree Missy. I'm on an aromatase inhibitor, but it also has fairly nasty side effects which I didn't know much about.
But thank you to BCC - I was only 36 when diagnosed and your leaflets for younger women with breast cancer were very useful. I'm coming up to 4 years since diagnosed, and adjusting to the new normal even now.

Hello I was diagnosed with breast cancer in 2013 and had a lumpectomy and radiation. I was on Tamoxifen for 1 1/2 years and am now on Arimidex. I have developed these bony nodules on my finger and the other one are going the same way. My finger are very painful. Is there anything I can do? Thank you.

How do I find the webchat, please? I am enrolled on the website and can access the facebook page. Thank you.
Ps I meant 'My fingers are painful'.

Freyanna the web chat should be on this thread tomorrow

Thank you.

I have heard of IceSense3 that is a minimally invasive cryoablation treatment being successful in the USA and Israel. Do they do it in U.K., are there any trails here? Any information on this method of treatment for DCIS?

It's great news that Kadcyla was approved in Scotland, but what can the public do to ensure that everyone has access to the drugs they need, particularly secondary cancer patients? I understand that many new cancer drugs only have a marginal benefit, but even when a drug such as Kadcyla comes along that is available in other similar income countries, we hesitate and fall behind. We have great scientists in this country but we are slow to implement new research findings. Perhaps this partly explains why cancer survival rates in the UK lag behind the Europen average.

I can't make the webchat but I've had a tender under arm for a couple of months now and an itchy breast, unsure whether this is anything that needs to be checked out. Also can the progesterone only pill cause breast cancer?
Many thanks

I've got an appointment at the breast clinic coming up after a referral from my GP this week. A couple of months ago I noticed a ripple or indentation under one of my breasts when I lift my arm in the air. I've got big boobs and the mark is on the inner underside, so isn't really obvious when my arms are down. No idea how long it has been there but it doesn't seem to have changed since I first spotted it. No lump, redness or orange peel like skin etc.

Upon examination the GP could see it too. She couldn't feel any lumps and was very reassuring but has made the referral to the clinic to be sure. I'm mid 30s and have breast fed two kids for 12+ each so my boobs aren't in the best of nick now and am desperately hoping that the mark is related to that!

However I have made the terrible mistake of googling and everything associated with a breast indentation seems to be bad news with a bleak prognosis. I'm not asking or expecting any sort of diagnosis before going to clinic, but wondered if you could give me your experience on breast indentations. Can they sometime be non sinister? Just wish the appointment would hurry up. The wait is destroying me!

I had a double mastectomy and implant recon a few years ago. I only had cancer on one side but wanted them both off (I was lucky that my work BUPA policy paid for it). I still get odd pains and twinges on the cancer side but will that be from the node removal rather than the mastectomy. It seems odd that the other side is completely pain free. Thank you!

Also, what can be done to reduce hot flushes? I'm on zoladex as tamoxifen made me want to top myself. I'm like a one woman storage heater sometimes.

I'm a week on from having a lumpectomy and Sentinel Lobe biopsy. The spped this has been conducted at has been brilliant. However, you get sent home with dressings and a leaflet. The breast care nurses are impossible to get hold of. My skin broke down with the dressings and I redressed my under arm myself. Is it not unreasonable for day patients to be visited a couple of times after the op by the district nurse for redressing or just reassurance. I can't drive so can't get to a hospital and am not up to walking two miles to pick up a bus. Husband can take time off work for the 'big' appts but not reasonable for something that might just take 15 minutes. At the moment I feel very alone and managing pragmatically by myself. I think I have seroma but not sure. I could be doing all the wrong things or right things - not sure. I left my under arm dressing off yesterday - right or wrong - i don't know. Can I start using aloa vera gel on it? I don't know. There needs to be more contact not whip in, whip it off, send home, phone call next day, silence until path results back two weeks later.

flyingpretty just wanted to give you some sympathy and support. I struggled with the same issues after my mastectomy and node biopsy. Yes I felt very alone with the complications after surgery and the breast care nurses were noticeably absent! it might be worth ringing your GP surgery and getting them or one of their practice nurses to look at you.

I have one year left of taking Arimidex, tumour 1.7mm, grade 2, no lymph node involvement. The BC nurse said the time may be increased to 10 years, do you know if that will happen? Thank you

I hope they can answer my question.

How does the webcam work, do we need to have one?

I am so sorry, I just noticed it was one question per person.

Can MNHQ maybe post and explain how this works?

Yes, Myheart I was just thinking the same!

A very warm welcome to Sarah and Jane who are joining us now from Breast Cancer Care and will be answering your questions over the next hour. Over to you....

Hi!

If you could read my question and offer advice I'd be very grateful.

Indeed Argy! Think I just need to be patient