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.

hello thanks for joining us and thanks for your posts. we will try to answer all your questions. Rachel

a couple of people are asking how this works - basically Sarah and Jane will log on to this thread and type up answers to your questions. You don't need a webcam (you won't be able to see them) but will be able to see their answers. If you have more than one question then it's fine in this instance to ask a follow up question (or two) the rule about one question per poster is mainly for super-busy webchats.
Hope that helps - do come back if you have any further Qs

Thanks HQ, much appreciated

Hi Its Jane and Rachel from Breast cancer Care

ArgyMargy Thanks for raising this. The campaign is still ongoing and we’re continuing to share its findings and examples of best practice, so that breast care teams, commissioners and providers can use this to plan for the needs of the patients they care for and treat.

If you would like to join our campaign, you can find out more about this on our website at www.breastcancercare.org.uk/secondary

Patience is a virtue, however there is only an hour allocated to this...

Hi heartbelongstoG

Breast changes like the one you describe do need to be reported. I'm not sure if you saw a nurse at the breast clinic. Do go to your GP to discusss this, they may have received a report for the ultrasound and can explain

@Freyanna

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.

Aching or pain in the joints and/or muscles is a common side effect of arimidex. These may be unrelated to the treatment. You are best speaking to your doctor about these nodules. They will probably be able to say what they are and suggest ways to manage the pain.

It was chewingawasp who asked about secondary breast cancer. My question was about ensuring all local services follow NICE/SIGN guidance and best practice, particularly around support services like physiotherapy.

@Mysillydog

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.

It can be really difficult when new drugs are released and access is potentially limited. Keep an eye out in the press and on our website for emerging information.

@missyB1

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?

We speak to many women who experience side effects from the hormone therapy and for some it can really affect their quality of life. We do have information on ways to manage side effects. Call our Helpline to talk this through. 0808 800 6000.

You can speak to our campaigns network abour awareness if it would help www.breastcancercare.org.uk/get-involved/campaign-us

I was seen by a consultant in a breast clinic. He said there was a huge lump there which I hadn't noticed as my breasts are quite lumpy. Feels like there is bubble wrap under my skin if that makes sense.

Are my symptoms classic? Its the burning/spiky sensations that worry me more than an inverted nipple.

@Jenny7676

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?

Hi jenny7676 We are not aware of any UK trials. The Ice3 Trial in the USA is recruiting patients until 2018 so it will be a long time before we get any data about this treatment

@homeworksavioursneeded

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!

thanks for your questions. Pain after breast cancer surgery and treatment is not unusual. This is usually related to nerve damage at the time of surgery and does get better after time. you may want to talk to your team if you are still in touch with them to talk it through. Hot flushes are also something we know can be a huge problem. You might want to look at our menopause information for tips www.breastcancercare.org.uk/information-support/facing-breast-cancer/going-through-treatment-breast-cancer/side-effects/menopausal-symptoms-after-treatment

@Flyingprettycretonnecurtains

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.

It can be really difficult to know what to expect when you are discharged from hospital. You may want to give us a call on the Helpline 0808 800 6000 to talk things through. You might want to look at our web site for more information on seroma as well. When you go for your path results you can ask about putting aloa vera gel on the scar

Myheartbelongstog I am the same, I haven't a clue how to access this, I thought if I plugged in my earphones I'd hear it!

@weebarra

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.

Glad you found our information useful and support for younger women. The side affects with aromatase inhibitors can be really difficult for some people. Talking to your team can be helpful if they are particularly troubling.

@GoldInTheAirOfSummer

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!

Hello GoldInTheAirOf Summer- waiting for a breast clinic appointment can be really stressful. Pehapss knowing what to expect might be of some help. Here is our info about what happens

www.breastcancercare.org.uk/information-support/have-i-got-breast-cancer/what-expect-breast-clinic-appointment

Its tempting to Google symptoms but this usually just increases anxiety. Breast changes can happen for many reasons and most women referred to the breast clinic do not have breast cancer

I had a double mastectomy with immediate reconstruction using implants. The surgery was 2 years ago and I've noticed that one implant is sort of bulging out at the bottom (I can sort of push it around and pock it back in), the surgery was with Strattice. I've seen the surgeon and she wasn't that concerned and just told me to massage the tissue more.
It hasn't gotten any worse over the 2 years but hasn't gotten better either. Is this normal? Should I be worried?

@MyheartbelongstoG

I was seen by a consultant in a breast clinic. He said there was a huge lump there which I hadn't noticed as my breasts are quite lumpy. Feels like there is bubble wrap under my skin if that makes sense.

Are my symptoms classic? Its the burning/spiky sensations that worry me more than an inverted nipple.

There are many reasons why you might have these symptoms MyheartbelongstoG. The symptoms of breast cancer can be found below but remember they can be caused by other things. Its imporntant to get checked out as you have done but as you remain concerned do go back to your GP www.breastcancercare.org.uk/information-support/have-i-got-breast-cancer/signs-symptoms-breast-cancer

@ArgyMargy

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.

thanks ArgyMargy we are aware that NICE/SIGN guidelines can sometimes be interpreted in different ways across the UK. We often hear from people who experience mobility problems and keeping going with the exercises that are given long term can help with mobility. Pain and nerve pain can be really debilitating you may want to look at this link for tips on how to deal with it www.breastcancercare.org.uk/information-support/vita-magazine/coping-chronic-pain-after-treatment

@Ragdoll545

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

Hi Ragdoll545. We encourage all women (and men) to be breast aware. This means getting to know what your breasts look and feel like for you. This can give you the confidence to notice any changes and talk to your GP about them. More info here
www.breastcancercare.org.uk/information-support/have-i-got-breast-cancer/checking-your-breasts

Here is more information about the risks and benefits of the OCP including the mini pill
www.cancerresearchuk.org/about-cancer/causes-of-cancer/hormones-and-cancer/the-contraceptive-pill

@CateGory8

I had a double mastectomy with immediate reconstruction using implants. The surgery was 2 years ago and I've noticed that one implant is sort of bulging out at the bottom (I can sort of push it around and pock it back in), the surgery was with Strattice. I've seen the surgeon and she wasn't that concerned and just told me to massage the tissue more. It hasn't gotten any worse over the 2 years but hasn't gotten better either. Is this normal? Should I be worried?

Thanks for your post. You may want to have another chat with your surgeon or breast care nurse just to check that it's all ok and nothing has changed since you were last seen.

Thank you for your replies.

Good luck to all the ladies on this thread x

Thanks for the reply. I know that I need to stop googling symptoms but I am just desperate to hear a good news story from somebody who presented with a dimple or indentation. When you say breast changes, do you also include these?