How do I help my sister whose in denial?

Friends and family Supporting someone with breast cancer
1

This is my very first post to this website so please bear with me.

My sister had lymph nodes removed and radiotherapy some 15 years ago followed by the usual 5 years of Tamoxofen. 16 months ago we were devasted to be told she had secondaries in her neck, other breast and lung. Apologies for vague info but my sister is still in denial and doesn’t ask many questions when she sees her onc, which she won’t allow me to go with her too. She has been taking Femera for a few months now but due to the weight increase her Onc said she was ok to do exercise and he thought she maybe running a marathon in no time at all. However, since joining the gym some 5 weeks ago, 2 weeks ago she noticed another 3" lump in the other side of her neck and has returned to her Onc who has advised to stop the Femera and the gym for 2 weeks and have a bone scan this week.

I have been fighting the system for 15 years to have the BRCA1/2 gene testing done because our mother also had BC, albeit, she didn’t die from it the shock of hearing the news she returned home and had a massive heart attack at 64. They refused me many times for this test but when my sister’s cancer returned they agreed to test her but sadly they said the results were inconclusive. I have persisted but to no avail as they feel the genetic line would not be beneficial to me/us and the only other option is for ‘selective double mastectomy’ with re-constructive surgery.

I have seen a breast nurse today for the first time having had the usual clinical psychologist report done and I am due to meet with the Plastic surgeon on Friday. The breast nurse will attend this appointment.I am more than ready to go ahead with this procedure but my husband is registered disabled with Heart/lung/Osteoporosis,and I am his full time carer. He is due to have a heart regulator fitted next week (similar to Pacemaker) and I have a few questions I would like your help with please.

  1. Assuming I have the ‘implant’ operation which has been suggested would be better for me, how long is the recovery and when could I drive again?
    2)How severe is the pain from this operation and the pitfalls that may occur with this?
  2. The surgeon will be doing this in two stages - how long is ideal to leave between these operations?
  3. More importantly, how can I support my sister with her treatment and ensure that she can enjoy whatever time she has left? She doesn’t do tea/sympathy - she’s a workaholic and likes very little time to think about it.

I feel a little of a fraud for my position but the NHS hasn’t installed much confidence in our family having mis-diagnosed both our parents.

I appreciate this is alot to ask in one blog but any help would be sincerely appreciated.

Regards
Shelley

2

HI Shelley, I just wanted to welcome you to the forums, boy you have a lot on your plate right now don’t you. I’m really sorry about your sister’s illness progressing. My sister is the queen of denial about everything in life and I would just say someone gave me some good advice once - if its her copiung style don’t knock it - cos if its what she relies on to get her through then if you take it away she might be in a very difficult place. MAybe she’s doing the best she can?
Irritating I know, beleive me!
bw Nicola

3

Hi Shelley, I’m sorry I cannot help with most of your questions as I was diagnosed stage 4 from the beginning so no ops for me…good luck I hope all goes well for you. I had the genetic testing and was told I had neither BRCA 1 or 2 mutations but my daughter will be able to have earlier screening. I have been living with bone secondaries for the last 8 years and reading of your sister I would only suggest, and feel free to ignore, skip the rest of this post, that if your sister is happy in denial then whatever works for her, it’s her chosen way of coping. I don’t automatically tell everyone I meet I have breast cancer, I try not to let breast cancer take over my life. I’m not in denial. I will die fairly young of breast cancer. But right now I’m just making sure I enjoy how ever long I have left.
Re your sister’s hospital appointments, I like to attend most appointments on my own. I have a lovely supportive husband and family but I want to feel I can take charge and have some control…well as much as that’s possible. :slight_smile:
Best Wishes…x

4

Hi Shelley, you sure have a lot to think about there. I’ve had bilateral mx a month ago, one of them had no cancer but I have family history. They refused to test mum and me also, as we developed bc over the age of 45. I was very lucky to only have DCIS with no invasive cancer in one breast, but it was a large area and high grade hence the mx. When I got my results, I had abnormal cells in the other breast - not cancer, but risky for it so I felt I’d done the right thing. As for getting over the op, it’s big surgery and it knocked me for 6 (I’m 49 and very fit). I’m still having some pain, I managed to drive short distances after 3 and a bit weeks, but I still feel tired after not much effort and I have restricted movement. I certainly couldn’t lift anything heavy. I have a physical job and was advised that I’d need a minimum of 2 months before going back to work, as I feel at the moment I think it might be slightly longer. I’m not having recon, but I think the expanders and implants can cause problems with movement as they go under the pec muscles. There’s a lot of info on here, look on the forums and you’ll get an idea of some of the things that can go wrong, as well as some posts from people for whom it’s all gone well. I would call the helpline if you haven’t already, and ask them to be put in touch with a volunteer who’s had the recon. None of this is simple and problem-free, but it is doable. You have to make the right decision for you. Best wishes to you and your sister, Lynne xx

5

Wow! ladies, where do I start?
I’m over whelmed by your replies.

I’m not wanting to remove my sister’s coping mechanism but merely looking for ways to explore her condition finding what may help her through it possibly without her even realising were doing it. It’s a technique I have learned over the years with my husband’s condition because he doesn’t like to know everything so I have drip fed information to him in bitesize chunks and then waited for him to ask questions when he’s ready. I appreciate each to their own.

My niece accompanies my sister to her appointments but is overwrought with sadness and crumbles and I feel my sister portrays the ‘I am coping’ when in fact she could be very well missing out on important information. I am of the opinion from my sister’s original cancer treatment (she is still under the same onc) that he understands that his patient won’t cope with the prognosis and skirts around with a very good bedside manner. Don’t get me wrong, I don’t have a problem with that. I just wish there was away of me finding out her prognosis in order to support her the best way I can because when the inevitable comes around I will have to pick up the pieces for my niece and her son and selfishly, I work better if I have a plan. I appreciate, that looks good in an ideal world and I am more than happy to support all concerned however long my sister has and will ensure we can make it as memorable and comfortable as possible.

I’m not familiar with all the abbreviations. What is a DCIS?

I confess I am surprised to read that expanders and implants ‘move’ under the pec muscles but I will have a read through the forums and see what may cause this and in what circumstances.

Phew! Just to add to my problems, I tried to go into our loft last night looking for some documents and unfortunately lost my footing and fell, breaking the ladders and bruising my face, knee and pride.

I have collected my thoughts this evening and have started to write down a few questions for tomorrows appointment with the plastic surgeon. I don’t know if I will come away with a date for the first procedure but I am happy things are moving along.

Thank you you wonderful strong ladies for welcoming me to this forum. Stay strong, be happy and as my Grandmother used to say "be the kind of woman that when your feet hit the floor each morning the devil says “Oh crap she’s up!”
Regards
Shelley

6

HI Shelley,
thanks SO much for reminding me of that phrase about the devil and “oh crap she’s up”! I will endevour to continue to be one of those people. Watch those ladders now!! bw Nicola

7

Hi Shelley, i’m really sorry about your sister but i do agree with the others that we all have different ways of coping & often that’s our only way. I had a mastectomy with immed recon (permanent implant placed underneath the chest wall muscle) last June. I couldn’t face the bigger ops & was worried about long term problems for my back or tummy. The implant looks great with a bra on but without i am very asymmetrical as the implant is higher & firmer than my existing breast (this is common) but i often thing that 2 implants would look better than one! One thing i wasn’t told was that on some arm movements the whole breast clenches and moves sideways( because the chest muscle is now on top not underneath) which looks really odd & feels odd too. In that way it doesn’t behave like a normal breast just hanging there & it does upset me sometimes.
In terms of recovery i was in hosp for 3 nts. I did have quite alot of pain & had difficulty sleeping comfortably for a couple of months.I wouldn’t have felt well enough even to do an office job for 8-10 weeks (although everyone is different).I imagine the whole lifting thing would be difficult with a bilateral op as i did rely on my othher arm. I hope this is helpful. I’m sorry but must end now as have to go out! It would be great to meet someone who had had the op to speak to and ask lots of Q’s… i wish i had. Rosie

8

Shelley

I’m afraid I can’t offer you any advice on your forthcoming op, though I hope you receive all the information you need and that things go well - whatever you decide to do.

With regard to your sister I think I would echo the feelings of others - each of us has our own way of dealing with the devastating news of secondaries and although she may not appear to be asking enough questions, she is probably receiving as much information as she can cope with. I understand your very natural instinct to want to help and be proactive on her behalf, but she really will have to find her own way of dealing with living with secondaries. You are already showing what a great sister you are and I think that you should just be ‘there’ for her if she chooses to ask you for help. To a certain extent a healthy amount of ‘denial’ helps us with Stage 4 to carry on living our lives. There are many women with secondaries on this forum and although we are all united in our illness, our approach to dealing with it can be very different. My friend’s sister virtually locked herself away with her immediate family, refusing to see anybody else. This was obviously distressing for my friend and her family but they respected her wishes.

It’s often very difficult for family members to know what to say or do, the fact is there is no ‘right’ way of dealing with this situation. We must all find what is comfortable for us. Keep communication open and just be her sister - you seem to be a very good one.

Alison

9

All the best for your appointment Shelley, you sound like a very strong and supportive sister and I understand what you mean about different people’s approaches to bad news. I absolutely LOVE your grandmother’s quote! I’m using that one now! Hugs, xx

10

Hi Shelley,

Can’t really help on the op but I so understand why you have reached that decision. My mother had bc at 41 and died of it. Although the other female members of the family are fine so far (touch wood), I was recently dx. I will never know if it is genetic as I can’t test against my mother but I wonder now if I should have done something preventative.

In terms of your sister. My mum didn’t talk about her bc and seemed to know few details of her recurrence. My Dad didn’t realise she was dying. I wondered if he was in denial at the time but he swears he really didn’t know. On the other hand I rang the consultant when my mother was really ill and had a useful chat where I found out more details and felt better able to help her. Whether it is different being a daughter to a sister on what a consultant would tell you, I don’t know. I would back up what the others have said though. You want to know and understand so that you can help. I am right with you on this one. My mother and your sister didn’t want to know all the details, maybe don’t want to talk about prognosis and so on but left it in the hands of the doctors. Neither is right or wrong but it is still difficult for you to deal with particularly with the family history which draws you into the realm of bc risk too x

11

Thank you all for sharing your experiences with me. They are all valid points.

Last night having read quite a few threads I did start to feel quite scared at how close my op is getting and I know that will increase as time draws nearer, but I am confident that my decision is still the right one.

Mary Grace, you raise a valid point on whether the consultant would tell me anything being a sister. I had thought of telephoning his secretary but have resisted on the grounds that I wouldn’t want it to affect my relationship with my sister if she ever found out. I do have to respect her wishes and I will, but it doesn’t stop me feeling slightly helpless at times. I guess this is something I will have to learn to deal with as times goes on in the hope that my sister will open up, a little at a time.

Tawny, I agree, a certain amount of denial is healthy and I do accept that is is used as a coping mechanism in many situations, not just for bc.

I’m glad you appreciated my Grandmothers quote. I have used this many times and it has raised a few eye brows in various places of employment. Many years ago, I worked for a large firm of Solicitors as their Payroll Manager and the Finance Director use to hide when I was around but my colleagues knew me better.

My appt went quite well this morning albeit, my husband hasn’t asked me the details yet. He will in his own time. He is psyching himself up for his own heart op next Thursday. The plastic surgeon has suggested due to my circumstances that it may be worth considering having the whole job done in one op to reduce the anxiety for my husband depending on which type of re-construction I want. (‘What I want’?, I find this difficult to take in, knowing I have a choice). The breast nurse had suggested the implants as this was a quicker recovery rate and as I have third degree burns on my body (from a serious road traffic accident 17 years ago) I felt it would reduce the number of scars on show. However, today that seemed irrelevant and I will continue my research into the various options and my aim is to talk to people in similair circumstances (who have chosen ‘pro-active’ bilateral mastectomy).

I’m glad I prepared a few questions, they came in useful. Success rates, complications, driving restrictions and all things considered we have agreed for me to see him again in August with a view to have the op in September after we have returned from our holidays and given my husband time to recover from his surgery. I have some weight to loose in the meantime which I had already started working on 3 months ago, so on a positive note I will have retail therapy to look forward to and fully intend to involve my sister in that plan.
My husbands care plan will be amended in time for when I am discharged so as long as they can keep his anxiety to a minimum I will cope with the rest.

Rosie98, Thank you for sharing your experience of implants. During my early research on bc I came across a film on the TV called ‘Two voices’ about two women who had had implants for different reasons and their experiences of them. I still have that recorded on my TV and actually watched it again last night to refresh my memory of their experiences. There are a few clips about it on ‘You tube’. I do have some concerns on how I will sleep following surgery but compared to what my sister is going through I won’t be complaining.

Both my sister and I haven’t had an easy life and I guess deep down we know that we are here for the other one but I can’t help being sad knowing what’s ahead for her.

Hugs to all x x

12

Good news ladies.

Yesterday (Sat) out of the blue my sister invited me to do a little retail therapy with her. Next month she is attending a friends wedding in Cyprus and wanted to look for an outfit. Naturally, I jumped at the chance and we had the best 6 hours of fun. It was magical. We laughed so much and she has started to talk about her recent scans etc. We will be doing it again that’s for sure but what I didn’t expect was when I returned to my car alone, I just burst into tears and cried all the way home.

I know you will all be saying that we take the good with the not so good times and learn to cope with each as they occur. I wouldn’t disagree with you but I am finding it really hard to do just now but yesterday, it was the best memory and I fully intend to make quite a few more.

All I know is; it was bloomin good to laugh with her.

Hugs to all x x

13

It’s all so difficult, but I’m really glad you had such a fab day. Memories of times like that are what it’s all about, and that kind of day will surely help your sister to cope xx

14

Thanks bubbletrouble,

My sister sees her onc tomorrow so I will be waiting by the phone for her news on the results of her recent bone scan.

In advertantly last year, I had booked both my sister and I for a massage but because of her condition she was only permitted to have a short light massage. My sister doesn’t do thrill rides so if anyone has any suggestions what we could plan to make her time special I would really appreciate your ideas.

Hugs to all
x x x

15

It’s been a little over 12 months since I last posted here and I am pleased to say that my sister is still with us although somewhat thinner.
She continues with Femera and scans show that her cancer has spread to neck, throat, other breast and lungs. not sure if its one or both or by how much. We are due to see her Oncologist next month, although she has requested to bring it forward.
More recently she has had difficulty keeping food down and the tiredness is taking over rapidly. She continues to work because she says it helps to occupy her mind and keep her busy. However, I am concerned at the recent rapid weight loss and I am not sure whether this is due to the cancer, her medication or the lack of appetite.
Today, I obtained some booklets from my local cancer support group but I would appreciate your thoughts please on what we can expect moving forward.
Shelley