Refusing to go through with mastectomy...

Hello,

My mother had a lumpectomy about 4 years ago and only recently the doctors have told her that the cancer has come back in the same breast and they recommend carrying out a mastectomy. She has Stage 3 inter ductal cancer.

The docs have told her to come back in 2 weeks to arrange a date for the op. However she is refusing to go through with the op :frowning: She spoke to a friend of hers who had both breasts removed (at different times tho) and she told her of all the pain she’s in now even tho it’s been 5 years since surgery. She suffers from severe pain in her arms and needs physio. Her hands and feet also swell up a great deal and the fluid has to be drained (don’t understand why…)

I’ve explained to my mother that if not removed then it has the potential of spreading but she doesn’t want to talk about it. What can I do? She believes that prayer will heal her and doesn’t want surgery. She hasn’t told the docs yet, maybe when she does, they will convince her otherwise…

Regards

Patience

Hello Patience, and welcome to the Breast Cancer Care discussion forums where I am sure you’ll get lots of support for yourself and your mum.

Could I suggest that you give the helpline here a ring and have a chat with one of the staff who are here to support you. Calls to the helpline are free, 0808 800 6000 lines open Mon - Fri 9-5 and Sat 9-2.

Take care.
Jo, Facilitator

Patience what a terrible position for you both to be in - I am so sorry. You don’t say how old your mother is, and I wonder if this is another factor in her reluctance to have the mx.

I haven’t had a mx but there are many ladies here that have, and I’m sure some will be along to offer advice shortly. In the meantime, do you think your mother would let you go to her next consultation with her - just to make sure she fully understands the implications of refusing surgery? Of course there may well be other treatments that would be acceptable to her and her team - I do hope so.

finty x

Hi Patience

I’m sorry to hear about this. Has your mother got a breast care nurse? If yes, I would ring her and have a chat with her about your mother’s reaction and ask for her advice.
It may be that your mother just needs some time to get used to the idea and will go through with it. I’ve had a double mastectomy so I do understand the fear or it but frankly the fear of cancer was greater. Do you know if your mother will have to have the lymph nodes removed from under her arm?

I’m afraid I don’t understand at all about the hands and feet swelling and being drained - I’ve never heard of that. Is it possible you could speak to this friend and find out more as it may well be that some of these health issues are unrelated to the mastectomy.

Is your mother going to see the consultant in 2 weeks’ time? If not, then I think the best thing would be to arrange to see him/her again. You could phone their secretary and explain the situation. I would definitely keep your mum in the loop about anything you do though and discuss with her. It is her body and ultimately the decision is hers.

take care
Elinda x

Patience, what a concerning time for you and your mother. I think it may be worth while pointing out that no two breast cancer cases are the same and the outcomes of surgery are very individual. I am sure your mother will have the best surgical care available should she chose to have the op, but she should be able to make the decision based on her clinical state not someone elses experience. I had an mx with immediate recon in Feb with lymph node clearance and have recovered very well. Any surgery has risks of course, and you will be able to discuss those with your surgeon and BCN. Maybe you can call into the helpline with your mum to find out more. I wish you both very well. Tinaxxx

Re the swelling - it sounds like her friend might have lymphodema, would that not be related to the lymph removal more than the mx?

sorry to hear of your mums situation, can I just say , i had mastectomy with immediate recon, and lymph node removal, and felt no pain at all not after the op or further down the line, also has seromas drained x3 with no pain. im sure your Mum is in shock and i am sure she will make the right decision. I was terrifed of it all .

I did develop a frozen shoulder a few months ago, and that was painful, but did not admit that to hubby as he has had one, as my BCN said there is no reason on this earth why u should be in pain, the pain control is so effective

good luck ,take care xx

Hi Patience

I understand how worried you are about your Mum but I think it is important that you don’t pressure her. She is a grown woman and if she does not want the op and realises the possible consequences of not having it then that is her choice.Mx does not guarantee the cancer ot recurring and she may know that. It is a horrible prospect for some and it’s hard to be pressured by people who love you - you give in but actually feel like you have betrayed yourself. I had mx 2 years ago, I’m still not over it and I actually find my body more repulsive day by day. Some women never do get over it,some do. You don’t know till afterwards.

Maybe give her a little space? It’s her body and she has to live with it - not the Docs or any of those who love her.She may decide to do it if the pressure is off. You have to feel comfortable in your own skin. Good luck to you both.

Love

Jane x

Hi

Sorry to hear about your mum. I had right mastectomy and lymph node removal, I had, what I would call mild discomfort afterwards, which only needed paracetomol. I am now waiting for reconstruction. Your mum will hopefully settle down and make the right decision. Her head will be in a turmoil just now.

Love to yoy and your mum

Carolyn x

hi patience,

so sorry to hear about your mum. I have had a lumpectomy, not a mastectomy so cannot comment personally about it. But from your post, its seems that the experience of this one friend of your mums has been quite influential in her decision. Perhaps if she spoke to a few other women who had had mastectomies she would be able to make a more balanced decision, even if that decision was still not to proceed with it. I seem to recall that the careline here can put people in touch with other women who have had similar experiences to you so that could be a starting point, and your mums breast care nurse may also be able to help. Mine arranged for me to meet another younger lady who had been in my position 2 years previously when i was terrified and newly diagnosed. Also, the surgeon could help ease her mind when they discuss this anyway.

All the very best to your mum, you and all your family

Vickie

Hi, I have had a mastectomy and have found that I have recovered well.
I am also having a mastectomy on the other breast shortly and hoping to have a double reconstruction at the same time.
As mentioned earlier everyone reacts to surgery differently, and you may find that your mum would recover well.
I hope your mum makes her decision based on facts and not on the experience of one person.
People always seem to want to tell everyone their horror stories, but be assured there are a lot of positive stories too.
Hope this helps. Love and hugs, Debbie. xxx

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Sorry to hear about your Mum, I had a mastectomy 5 weeks ago and can honestly say I have had no pain or discomfort at all, it is such a pity that your Mums friend as scared her so much as I am sure she is the exception and not the norm as you have read on here most ladies have found that it is not as bad as expected.
Celia,x

Hi Patience

I am 55 and I had a left mx and lymph node removal September 09. I have since had chemo, rads and I am now on herceptin.

I can honestly say the operation is not as bad as I expected it to be. The pain is a lot less than I thought. I have not arm swelling, or leg or feet swelling for that matter.

I can only say what others have said before me speak to her breast care nurse, she is there for the whole family.

Take care
Marian