My friend has breast cancer..

[Becca19962014]

I found out a couple of days ago. She was my student and years later we became friends (so long ago I can't even remember how we ended up being friends!).

Anyway, she was diagnosed three months ago. That isn't a problem, but when I last saw her just before christmas she kept asking me about my experience (which was very easily treated as it was a lump which was a case of simple removal and no further treatment - I was very lucky).

When she mentioned it to me she said about the (to me) long delay and how she's putting off the double mastectomy she's been told she has no choice but to have so she can have time off work over the summer (she works in a school), recover and be back again ready for September, all fit and heathy and ready to go and is booking a big trip next year

I did ask if she'd spoken to anyone about this (other than me) and she said yes, she saw a doctor at the hospital two weeks ago who 'zipped' through the options to do with reconstruction. Her oncologist just said 'both must go' and that was it. I asked her about further treatment such are chemo etc and she said the oncologist didn't talk about that at all and just said have the ops.

I'm really concerned as she refuses to acknowledge any further treatment than mastectomy and reconstruction might be needed. She is really determined that's all there is to it and kept repeating my experience to me as if what I went through is some sort of standard treatment for breast cancer - I did keep saying it isn't but she won't accept that.

I was with her for two hours talking about this (her talking, me listening except to ask about treatment) and it felt a lot like when I was her lecturer again helping her with essays, showing me all the reconstruction options and which should she go for etc. She said the only thing she needs to do is 'book' her mastectomy ops and choose which reconstruction and that's it job done

I'm really concerned. Am I right to be? Mine was a lump and apparently hers isnt - it's a different type which automatically means mastectomy but, she says, that's it.

I guess what I'm asking is for people's experiences. I'm really worried she is totally burying her head in the sand about this and I really want to help her but don't know how She doesn't have family and doesn't really see anyone apart from me and that isn't very often as we don't live near to each other.

Sorry for the essay, I hope this makes sense! Ill reply as soon as I can as my internet access comes and goes (the joys of mobile internet!)

So she was diagnosed 3 months ago but hasn't had any treatment yet and is waiting till the summer for a mastectomy ? That doesn't sound right at all. I had to wait a month for my lumpectomy and that was a long wait. Hate to say it but are you sure that what she us telling you is true ?

I had a mastectomy and then a 2nd a year later. No further treatment required on either occasion as the cancer wasn't invasive, so that is possible. Both times it all happened very quickly though ie surgery carried out within a few weeks of initial appointment. I was keen to get it done and surgeon didn't want to delay either.

It sounds as if she is struggling to get her head around it and I can totally empathise with that. Is there anyone else supporting her? Does she have a breast care nurse she can talk to? My BCN was the person I went to for additional support and info and to think through my options.

Also, IME you don't know for sure whether you will need further treatment until you've had surgery and all the tissue has been thoroughly looked at to confirm no invasion, so I certainly didn't feel like booking any big trips away while I was in the middle of all that.

My mum had a mastectomy. It's definitely true they dont know what further treatment they're going to give until they can send all the tissue they cut off to the lab. It's not just the tumour itself, it can invade the rest of the breast and you don't know this until you get it to a lab after surgery.

If they're recommending a double mastectomy, the cancer sounds very serious. With a mastectomy, they will take a/some lymph nodes. Again lymph nodes can look ok on an ultrasound but actually have cancer cells (microscopic). My mum's were clear on ultrasound but had cancer cells found in the lab after surgery.

It's horrific and in the appointments, my mum (who is very intelligent and articulate) glazed over in fear and could not recall what was said.

From the information you've given, it would seem like she will need surgery, 6 months chemo and a course of radiotherapy after that

I'm going trough treatment now for breast cancer but am only really knowledgeable about my cancer and the treatment that it's needed. I've had to have the full works due to the type and grade of tumour.

However, I've done lots of reading on the way and what I've started to understand that there is something called DCIS (ductal carcinoma in situ). Surgeons/oncologists usually refer to it as grade 0 or pre cancer. There are cancer cells within the milk ducts but they haven't yet learned to spread into the breast tissue and are therefore not invasive.

These cells do not respond to chemotherapy however they do need to be removed in case they develop into invasive cancer. If they are localised and cover a small area then a woman can usually have a lumpectomy. However if they cover a large area or are what they call multi focus (ie in lots of different places) then a mastectomy is the only way to go.

Usually if you have a mastectomy and no lymph node involvement then you don't always have to have radiotherapy. So as marshy says it is possible to have breast cancer and have no other treatment except surgery.

However I would agree that it seems very strange that she is in a position to elect when she wants surgery. The NHS has guidelines and targets that they have to adhere to so I would be very surprised that they would allow her to defer surgery until the summer

As minty suggests, I had extensive and high grade dcis in both breasts, a year apart, which was sorted out with a mastectomy both times. I had biopsies to see if my lymph nodes were affected, which they weren't, and a final report on the breast tissue post op to see if the cancer had spread out of the ducts, which it hadn't. It took a while to finally confirm that during which time I was a gibbering wreck.

A delay of a few weeks for tests, decision making and planning wasn't an issue but I wouldn't have wanted to wait months for surgery. My second breast went from a clear mammo to extensive dcis inside a year. It has the potential to become invasive which then puts you on a different and more extensive treatment path. I think this is one of those times where health has to come first although I understand that people have real life issues around finances, family and work responsibilities etc. It's also a real shock to suddenly find your life on hold and that takes some dealing with.

I had immediate implant based reconstruction for both operations. Immediate recon isn't possible for everyone and neither is it everyone's choice. It's a very individual decision.

One of the things I found most difficult is that I was having to make decisions, particularly around whether and what kind of recon to have, when I only had partial info about the extent of what I was facing. That's where talking over the options as they applied to my individual circs was so helpful. Every case and every woman is different and in the end it is your friend's choice as to what she does and when, but getting the right info is key to making those decisions.

Lots of info and support on the Tamoxigang thread if she's a mumsnetter. Also on the reputable websites.

Thanks for the replies. I'm having a lot of problems posting today so forgive this being so short.

I think she is not coping. She has mental health problems and I can remember her making wild assumptions about things when a student, due to her mental illness, when struggling to cope and I think maybe that's where the thought she can elect when to have surgery and will the be fine has come from as she feels she can control what's happening and it's less scary for her.

She doesn't have any help from CMHT anymore, she was told to pay for help when she started working (she didn't arrange anything as it was too expensive).

I've spoken to someone in boots today and they suggested contacting Macmillan (apparently they will support friends as well as the patient) and they suggested maybe I helped her to do it as they could help her to come to terms with it and understand. I am not equipped to do that, I'm aware of the problems in this area in terms of treatment being hundreds of miles away and not being able to contact people like breast care nurses due to them being in another county and trust and can offer understanding but as I am chronically disabled I can't even offer to help her get to her operation. At the moment the priority is her understanding needing to get the operation done.

I'm hoping to see her this weekend and talk things through then.

She isn't on MN.

Thank you all so much for your help, I really appreciate it.

It sounds like a tricky situation Becca and that you are a good friend.

I'm not medically qualified - just speaking from my own experience and what I've gleaned along the way - but wanted to reiterate that requiring a mx isn't in itself an indication of 'seriousness'. As minty said ^^ and as my experience indicates, mx is not unusual if you have dcis but you could say that dcis is at the less serious end of the spectrum when it come to breast cancer. If that is what your friend has....and that isn't clear, to you at least. It might be to her.

I think I would be exploring with her how the plan to delay has come about and what her treatment team think of it. Are they pressing for more urgency? In the end though it is her decision. I'm sure teams see the whole spectrum of preferences from 'throw everything at it and now' through to 'leave me alone'.

Macmillan is a good source of info. I also found Breast Cancer Care useful. There are details of phone lines staffed by nurses on some of the websites but I can't remember which. Didn't use them myself.

May be worth encouraging her to go back to the Gp if there are other issues as well.

Good luck!

Thankyou for reminding me about what minty said. Like I said in my OP my experience is severely limited to my personal experience and that of my grandmother who died - both ends of the spectrum basically!!

I've no idea what her specific type of cancer is, she just said 'cancer' and looked at me blankly. I did mention her gp to her for advice but she said no way. She really does need more support than I can give her (and I feel awful saying that but it's true) and I'm hoping she will telephone Macmillan whilst I'm there -I don't mean I'll stay and listen in, unless she wants me too, but it might help her to begin to discuss things. I know she was given some leaflets but I've not seen them.

I'm worried about the delay. I did suggest she spoke to the oncologist about that (she said it doesn't matter but I think she means it doesn't matter to HER). The problem is complaining across trusts is a nightmare and I don't want to go suggesting a formal complaint at this stage in case she uses it as a 'reason' to wait for her operation - I think that can be done at a later stage.

She has been told to pay for mental health care and cannot afford to do so, so asking her to speak to her gp about that isn't going to help, unfortunately.

Thankyou for your reply. I've things going on in my life right now I'm struggling with (nothing like what's happening to my friend) and it really helps being able to ask for advice about this here.