BRCA2

Hello Jules,

Thanks for getting in touch. My name is Helen, I’m one of the Cancer Information Nurses on the Macmillan Support Line.

Welcome to the online community. I note that you have joined several of our forums and hope you find the community warm and supportive.

I was sorry to read that your best friend has breast cancer and has had to undergo such a lot of treatment. I was also sorry to learn that you had some news yesterday that has upset and shocked you.

I will do my best to help if I can but should say that as I don’t have access to her NHS notes, I can only give information that is general.

You mentioned your friend has inflammatory skin cancer, but I see that you posted a query on the inflammatory breast cancer forum, as well as joining the secondary breast cancer group, so it may be the case that your friend has an inflammatory breast cancer and that this cancer has moved to a second place. This would be called a secondary breast cancer.

Secondary breast cancer is treatable, but it is unlikely to be entirely curable, Jules. Treatment, such as Olaparib, is intended to keep the cancer under control and slow the spread. It is also important for keeping symptoms at bay, and ensuring the person receiving the treatment has as rich a quality of life as possible.

Such treatments can be given for several years and would only need changing if the drug no longer helps (scans show changes to the cancer), or if the person receiving it is finding the side-effects too impactful.

It can be the case that when one medication is no longer effective, there may be other treatment options available.  

I am not sure exactly what the nurse or doctor meant by describing the cancer as ‘being in the cells’ but I think it is likely to mean that your friend’s breast cancer has not been entirely eradicated, which meant that it appeared in a second place (secondary cancer), and therefore treatment will need to be long-term and ongoing. 

You asked how common this is and although I am unclear of your friend’s situation, in general, inflammatory breast cancer is considered a faster-growing type of breast cancer. The symptoms develop very quickly and involve the lymph system. This can mean the cancer can spread more quickly.

I am not surprised that you feel numb, and you have so many question to ask. Jules, would you consider giving us a call here on the support line? We can perhaps help with those questions.

I know you will want to be a support to your best friend and that’s tough when you are feeling so shocked and upset. Do remember that we are here to support her as well – sometimes it helps to talk to us because we are not part of someone’s family or friendship group.

Here is some information that might be helpful to read from our website, and Breast Cancer Now has Living with Secondary Breast Cancer support services.

Macmillan has a free emotional support service, which may be useful for your friend to consider – she is most welcome to refer herself via the link on the web-page.

I do hope this information is useful. Please don’t hesitate to get back in contact by email, webchat or phone, if you need further information or support.

The Macmillan Support Line offers practical, clinical, financial and emotional support. You can call us free from landlines and from most mobile phone networks on 0808 808 00 00, 7 days a week, 8am – 8pm.

Best wishes, Helen

Cancer Information Nurse Specialist 

Ref HM/JH 

Hi Helen,

Thank you very much for answering me, I wasn't really making much sense of it at all was I.

All I know is that she will be on Olaparib for 12 months, then another preventative drug for 3 years, see how things go then I presume this will be forever. I have another friend that was on preventative, she was advised to come off them, and wallop BC again, so another course of chemo, radiotherapy & drugs again, so the advice wasn't the best there. My friend is waiting for a lymphatic bypass operation, this we are hoping will be performed soon.

It just seems to be bad news after bad for her at the minute, we are trying our hardest to keep her going, we are all very run down and tired too, but hopefully soon we can have a bit of respite, once the better weather comes. We both have horses and its been very hard work. But its what is keeping us going.

Julie :) 

Hi Helen,
Sorry it has taken me a while to get back to you, such a lot happens with us at the moment, we have horses together, me and my best friend who has the BRCA2 gene. The cancer she has is Metastatic, and has been told she will never be cured of it, however the drugs she has been prescribed, as you say are to give her some sort of normality and quality of life.
Olaparib we got told last week was not meant to be the drug to treat (or help) her type of cancer as it hadn't been especially for it. However its actually helping, well there would be signs if it wasn't. 
We are basically looking forward and trying to stay positive, we have both been really poorly with the flu (she works in a hospital) and picks up all sorts, she had the flu last week and ended up back in hospital, she is neutropenic, along with this had to have anti biotics, so had to stop the oral chemo to give her body a chance to fight the infection, its a horrible thing and I do not wish this on my worse enemy.

My other half and my friends other half are signed up to do the Macmillan Longest Day Golf Challenge in June, my friend and I are going to be going along in the buggy, we are trying to give back a bit, what we can when we can. We are also completing a ride for bone cancer challenge at the moment on our horses. I think we have raise over £1K so far, not a lot by some standards but every little helps, so they say.

Thank you again and I am sorry if I rambled <3 

Hi Ju6

My name is Joanne and I’m one of the Cancer Information Nurse Specialists on the Macmillan Support Line .

I’m sorry to hear that your friend has been unwell. It sounds as if you are a great support to her.

Thank you so much for everything that you and your friends are doing to support the work here at Macmillan. It is really appreciated by everyone. I hope the golf goes well and that the weather is kind on the day. I know the horses will be less fussy about the weather conditions!

Do let us know if we can provide any further support for you and I hope your friend is feeling stronger soon.

Ref JH/AMc