Mum's Mastectomy

Mum’s Mastectomy

Mum’s Mastectomy Well, mum’s lymph nodes were clear (thank heavens) but there were pre-cancerous cells in several areas around the lumpectomy, so now she has been advised to have a mastectomy. She’s being absolutely amazing about it all, very calm etc

What I was wondering was if there was anything I could do/prepare for Mum post-op. I obviously know there will be psychological issues for her, but what in particular will she have difficulty doing/not be allowed to do in the days/weeks after the op? How long can she expect to be in hospital?

On a far more personal (ie selfish!) level, as I said, she is being amazing, but this is still partly down to her basically not asking the surgeon ANYTHING! I really, really do understand that people have different ways of coping, and that this is hers and I must respect that, but I feel like I’m going slowly mad! She has no idea what treatment she may have after the mastectomy, no idea what stage/grade her cancer is, whether it’s hormone receptive (?) or even what type of BC it is! I know that I’m a very different person in that if it were me, I’d be on here finding out as much as possible, but I worry that her way of coping kind of puts the cancer in control, if you know what I mean! Does that make sense? I’ve made a point of playing this very much as she wishes, not mentioning ‘it’ unless she does and not probing at all, so I guess I just felt the need to get it out of my system on here.

Sorry, that turned into a rather long ramble!

Thanks for taking the time to read it, anyway!

B xx

Hi B People vary greatly in how much information they want to know about their cancer. I like you (and I’m the one with cancer) want to know as much as possible. Others, like your mum, don’t. I think both are different ways of trying to stay in control of something which at times feels hellishly incontrollable but it can be hard when somone we love has a very different attitide to wanting information than we would want ourselves.

So you are going to have be a bit of a detective…and gather informationf for yourself and make assumptions on the bits of information your mum tells you. Her nodes are clear so that means she’s probably either Stage 1 or 2. Pre cancerous cells as well as the cancer means DCIS or LCIS and this is why the mastectomy is necessary. Grade you’ll be able to guess from tretament. If its grade 3 or possibly grade 2 she’ll have chemo probably. If she’s er+ pr+ (homrone receptors) she’ll get a drug like tamoxifen or arimidex.) If she’s her2+ then probably herceptin. As you learn more you can make informed guesses.

As for her mastectomy well yes it is an issue for any woman but it isn’t necessarily a massive psychological trauma.I never found mastectomy to be so and have lived happily with one breast and a prosthesis for three years…never wanted reconstruction and am comfortable with my body. (as much as any 50 something not terribly fit, poor muscle tone woman can be) Having cancer was the trauma for me (and still is…but that’s another story.)

Listen to your mum. Encourage her to talk when she wants to but don’t force stuff on her. There’s a very good book by Deborah Hutton called What can I do to help…75 practical ideas for family and friends from cancer’s frontline. (The author had a rather friendlier north Lonodn street than i’ve ever experienced but most of it is sound stuff).

very best wishes

Jane

PS I was in hopsital 3 nights, could drive again after 3-4 weeks. Came home with one drain and was eating out in a restuarant comfortably the day I came out of hosipital. In the pain stakes a mastectomy is usually not too bad because it not an op. which cuts through muscle.

Jane

Mum’s mastectomy Hi - well, the great news is that your Mum’s lymph nodes were clear. That is a fantastic prognosis.
I really would advise you to get a copy of your Mum’s pathology report as this explains all the different parameters as to the size of the tumour, stage,grade, and hormonal status and in my case, the Nottingham prognostic indicator, luckily a 4.4, so not too bad. You have every right to have this essential piece of information. No-one at my hospital told me about this, and I was very naive when diagnosed, but saw it mentioned on this invaluable site. My surgeon had no problem with my request, immediately went and got me a copy, but failed to explain it to me! Google searches and the ladies on here, helped me to understand just what my own breast cancer situation was and I am very grateful.

However, once I got home and translated the foreign terms, I slowly got an understanding. Like your Mum, I also had DCIS (both cribriform and comedo) around my 2 cm tumour. A mastectomy was never mentioned after my lumpectomy, but because of spread to the lymph nodes in my case and a 2 cm tumour, I was advised to have both chemo and radiotherapy. It could be that your Mum’s DCIS is widespread and the surgeons were not able to surgically remove all of the spots, hence the advice for a mastectomy. . My surgeon categorically, when I asked, told me they had removed all the DCIS, and 4 yrs later I am doing fine.

When I had my second surgery, a total axillary resection, the 74 yr old lady in the next bed had a mastectomy and she was only in hospital for 3 nights, whereas I was in for 5. We kept in touch for some months and she had no on-going problems. I can’t comment on the psychological effects, as I didn’t have a mastectomy. I am sure other ladies here will do so.

I can certainly empathise with your Mum’s reactions - my Mum’s were the same when my Dad got colon cancer - she didn’t want to know the nitty gritties. His surgeon told me before he told my Mum that Dad’s situation was terminal. I didn’t tell her the prognosis, which was he only had a few weeks to live as it had spread to his liver, kidneys etc., only that it was cancer, which was bad enough for her. I just let nature take its’ course, because she could not have coped - she always had hopes that he would survive. Dad was a realist, and I truly believe he knew the situation, but we alll kept up a pretence that he would come home. Sometimes, this is the only way the older generation can cope. This was 25 yrs ago though, and I am now entering that twilight zone, although thankfully not so naive.

I think you are brilliant, coming onto this site and searching for answers. We may not always have them, but there are a lot of very intelligent and articulate people on this site, who have vast experience of dealing with breast cancer. I am sure some of them will come on and lend their minds and experiences to help you, particularly as to the mastectomy questions.

Hope all goes well.
Liz.

pathology report I agree with Lizzie that your mum has a right if she wants to see her own pathology report and it is then for her to choose who she shares it with. You have no ‘right’ to that report unless your mum agrees. It is her cancer, her choices and i’m sure you will respect these.

best wishes

Jane

pathology report Jane - you are most probably right - I asked for my pathology report, but I am sure that my husband, as next of kin, could have requested it. Unfortunately, he was in a kind of mental paralysis and couldn’t get his head around the fact I had cancer. Same old… However, if I hadn’t been privy to the surgeon’s report on my Dad, none of us would have known what the situation was, and how to cope. My late twin was in Germany in the Army, useless elder sister used her two young kids to get out of coping, and it was left to me. Someone in the family has to be very proactive when their immediate family seem like headless chickens. Perhaps some 25 years ago there were not these stupid, nonsensical politically correct decisions about who is entitled to what information. I am just glad my Dad’s surgeons gave me the information I needed to bring the family together and get through a very difficult situation.

Hi Liz Sorry B to be having this debate on your thread…but hope it helps with your decision making a bit.

No, as far as I am aware a next of kin is not automatically entitled to any pathology reports. Doctors are very careful (fear of being sued probably) of protecting patient rights, certainly as long as the patient is able to take mentally competent decisions.

Lots of grey areas partic around children and young people.

For B…by all means tell yur mum she can ask for path report, but its really isn’t yours to see unless she wants you to.

best wishes to both of you

Jane

Thank you! Thanks for all the info! Don’t worry, I wasn’t planning on barging in and demanding any path reports! I do respect Mum’s way of dealing with this, it’s just hard sometimes feeling as if you’re in the dark! The thing is, because she hasn’t found out anything at all about BC, I’m not sure that she has any idea of what she doesn’t know, if that makes sense. I don’t think that she even realises there are different types of BC. I tentatively asked her, after the results were back from her lumpectomy, if they’d said if her cancer was hormone receptive and she didn’t have a clue what I was talking about!
She’s been doing her physio exercises after her lumpectomy and lymph node removal and is complaining that it’s getting harder to do some of them as it’s pulling more. I’ve suggested she calls her BC nurse and she just says “oh it’s probably my fibromyalgia” or “well I suppose I could, but I’m trying not to think about it really” AArrgghh!
Anyway, we’ll keep plodding on, I guess and I’ll do as you suggest and pick up info as and when I can.

Thanks again,

B xx

Hi B,

My mum was diagnosed with bladder cancer a year and a half ago. She would never talk about it at all. I had to find out everything from my dad.

I was diagnosed in February with breast cancer. I want to know everything about my cancer and how it effects me.

Mum has been given the all clear, but still finds it hard to talk about cancer - hers or mine.

I can understand how frustrated you must feel. I guess it doesn’t matter to your mum what kind of bc she has. Some people can’t get past the ‘cancer’ part. I’m sure that she’s receiving all the best treatment and getting what she needs from her team. Unfortunately you can’t know what it’s like to have cancer until you’ve heard those words for yourself. You just have to let her be and respect what she wants. It was definitely harder finding out my mum had cancer than it was receiving my own diagnosis!

May I suggest calling the helpline here? The ladies are soooo helpful and could help answer some of your questions, and maybe allay your fears a little.

Wishing you and your mum all the best!

Jacki xx

Apologies… Hi B…
so sorry if I upset or misled you about pathology reports - it never occurred to me that you could not ask for one on your Mum. I think Jane is perhaps being too politically correct in this area - when my twin brother was diagnosed with an inoperable brain tumour in 1995, I rang his doctor to find out the true diagnosis as my brother would not confront it. His doctor told me in no uncertain terms that my brother’s tumour was wrapped all around his head,(due to exceptional use of cellular telephone technology, as he worked on this for years in the Army and then went on to be BT’s first Technical Manager) and all they could do was palliative treatment. It was soul destroying for me.

I don’t have a university degree like Jane, just a very concerned sibling/daughter of too much cancer in my immediate family, and I seem to be the only person therein to find out the true position, and then deal with it.

The pathology report is really very important - perhaps if you or a friend,family member could go with your Mum for her results, they can “suggest” she has a copy of the path report. You really don’t know what you are dealing with until you see this.

Physio is so important after lymph node removal - I found it hurt to “walk the wall,” one of the exercises I was given to do, that it reduced me to tears. However, after going to the bc clinic with my right arm as if it was in a sling, , my bc nurse said" Liz, if you don’t do these exercises you are goingto have a permanently bent and shortened arm". Sure made me do them from then on, and now I have no lymphoedema or problem with my right arm.

You sound right on the ball with the way you have garnered information…keep on it.
Praying your Mum’s results are good.
Take care,
Liz.

Hi I am sorry that you your mom is going through this, it is probably easier to cope with having a serious illness yourself than a loved one…It is right what Jane says that as your mom goes through treatment it should be more apparent what her particular BC is…as there are definite treatments, that correspond with certain BC’s of course that wont tell you all,

Your mom must know that you are worried and that you are the ’ type ’
to want to know so ask her if you can go with her and have her permission to be told what her condition is, maybe you could agree not to talk to her about it afterwards…

I hope all goes well and you get things sorted soon, and that your mom is better than maybe you anticipate…

Jax

Thanks again everyone Thank you to everyone who replied. The day before her mastectomy, Mum’s friend, who coincidentally has also just had to have a lumpectomy rang to tell her her results from her surgery and told mum that the surgeon had told her that she had the lowest grade BC. This sent mum into a right old panic as he hadn’t said that to her! So all of a sudden she was beginning to realise all the stuff she doesn’t know! I managed to calm her down and reminded her that she’d had all her lymph nodes removed and they were ALL clear and that she was having the mastectomy because of PRE cancerous cells etc etc. I also suggested that she wrote down her questions to ask the consultant.

Anyway, the long and short of it is that she now knows she has medium grade BC, which she seems O.K with and has had the mastectomy, on Thursday. She’s coming out of hospital today and has been ok since the op, although I realise it’ll probably hit her more once she’s home.

So, that’s one more hurdle over and she has her next appointment with her consultant a week on Wednesday when she’ll find out what further treatment they’re advising.

Thanks again,
B x