I am new to this site but after reading many of the messages on here, I think this is the best place for me to be.
My Mum had a kidney removed in 2000 due to a cancerous tumour. And then she was disgnosed with breast cancer (DCIS) a few years after and had a masectomy. She was told it was low grade and didn’t have any further treatment. Last November she found a lump in her armpit. They discovered cancer again and on New Years Eve last year they removed all her lymph nodes. This was followed by chemotherapy and radiotherapy.
She then suffered with backaches, and whilst in hospital (due to the rigours (sp) after having Herceptin), they gave her an x-ray which showed the cancer had spread to her spine and rips. She has since had a CT scan, and has been told it is also on her hip and on her liver. She is receiving Herceptin, treatment for the bone cancer and will start on oral chemo soon for the liver.
I guess I just can’t understand how this can happen. The Consultant told her she is in 1.8% of people who have low grade breast cancer, who goes onto it being aggressive and spreading. She has up and down days. Most of the time she say she is going to fight this and is not ready to give up yet. She is only 61.
My husband and friends are being great, but they don’t really understand how I am feeling as they are not in my situation. I feel very lonely in this, as my 3 younger brothers don’t seem to understand the severity of the situation. I just get so angry that she has been so very unlucky with having it when she was told it was low grade.
Is there anyone else out there is this situation? How do you cope? What do you do for your parent/family member/friend? I just want to do something to help and I cannot think of anything.
I had low grade DCIS and had a tumour removed as well five years ago. It isn’t fair but I was warned that there was a risk of it coming back even though it was relatively low. Even low grade cancer is cancer. In some ways it is probably worse being a family member or friend than it is dealing with having the illness, as you can only imagine what it is like having it. I wish they knew more about the way breast cancer spreads and what could prevent it. Low grade cancers seem to develop more slowly and there are people who live for many years with secondary breast cancer, they now have better treatments to contain the disease even if they can’t cure it.
It is hard to imagine what it is like. I hate seeing my Mum in pain, although she is and always has been a fighter. Your line about people living with secondary breast cancer is very encouraging. Neither my Mum or Dad have asked the Consultants “that question” and I have hoped that the treatment will work and give her years more.
Angelus,
I know what you’re going through just now is very difficult.I’m currently having treatment for breast cancer,but found it more difficult to deal with my dad’s diagnosis of bowel cancer and the downside of the treatment he was receiving.Sadly he died 4 ears ago,but he remained very upbeat and uncomplaining for the 4 years he suffered. My mum tells me that he found our own practical approach to his illness extremely helpful when he was ill.My mum,sister and I all worked in Glasgow Royal Infirmary (me as a nurse) and were all used to seeing sick people,so I suppose we were less fazed than some folk.
Now that I’m going through the same scenario I understand how important family support is.Just be yourself and support your mum as best you can. If you have any questions about anything at all this site is the best place to ask.All of us have experience of the different types of treatment and are happy to pass on advice,tips or whatever.Just having a caring daughter will be a real comfort to your mum.I know that my 4 boys have been a great help and a real tonic with their crazy sense of humour.
Good luck and keep posting.
Tricia
I was in a similar situation to you - my mum was diagnosed in March 2004 with a stage 1 breast cancer with no spread to lymph nodes. It was a grade 3 tumour but the consultant kind of glossed over that. She had chemo and radio and the consultant said that he didnt think he would have to see her again. He did - in August 2005 it had spread to her lung. She died in August 2006 but that was from complications that could not have been foreseen, and the chemo she was on at the time was working really well. For a long time I was so angry, thinking that she was meant to be ok and we were under the impression that she would hopefully be one of the lucky ones. I couldnt understand why this had to happen to my mum and not someone else (although in reality I wouldnt wish it on anyone). No one can understand how you feel unless they have been in the situation. They can imagine it but that is all. I had my husband and loads of good friends but whenever I tried to talk about it they just said everything would be ok, so in the end I stopped. I must admit that I didnt cope very well at all - I was always in tears, although never in front of her, and just felt like I was in a constant fog that I couldnt get out of. I went on with my life like a zombie really. My mum was very like yours she really wanted to fight it - so I made sure that whenever I was around her I was upbeat and printed loads of uplifting stories from this website which really helped her. If you have a browse of the secondary breast cancer section of this you will be able to see many ladies in a similar situation to your mum. Keep coming on here and letting your feelings out it really does help. Love Joanne
Your friends sound like mine. They keep telling me she will be fine, how they are praying for her etc. I know these are really lovely things to say, but they don’t know she will be fine, they just say what they think I want to hear.
I find I am driving along, at work, at the gym, then suddenly the tears start without warning. I just can’t explain it. I am trying to be upbeat and positive for my Mum, but it can be so damn hard at times. She was walking in Makro earlier on today and her hip gave way. She is now is pain with that and obviously worried its something else. She is feeling a bit low today because of this. She has an appointment with her breast consultant tomorrow and says she doesn’t care what he tells her as it can’t be any worse.
I go on holiday on Sunday and I am feeling so guilty about it. I know Mum would love to have a holiday but is unable to. I keep thinking what if something happens while we are away (one of my brother is coming with us too). How can I enjoy myself when she is suffering with cancer? It seems so unfair. I am hopefully going with her to the local Force cancer unit to get some more insight into this and to enjoy a massage they offer to patients and family members.
I hope when she has had more treatments and is feeling in less pain, then she will want to have some days out.
Hi Emma, I was diagnosed with breast cancer and secondary bone cancer together in 2003. I was in my early 40’s when my hip spontaneously fractured and I received my diagnosis. I had a very succesful hip replacement and have lived well albeit on continuous treatment since then. I have no bone pain thanks to bisphosphonates (bone strengtheners) and good responses to treatments. Do have a read of the secondaries forum, there’s a very long thread there, ‘‘Anyone with liver secondaries’’ with lots of posts from some very supportive forum users. Best Wishes…x
Hi Emma I was diagnosed with grad 2 lobular in 1999 just as I was about to be signed off I was diagnosed with grade 3 ductal spread to liver and bones. There are lots of treatments that we can have that extend our lives as others have said check out the secondaries forum. I have found it invaluable and I am sure you will too.
I just did a really long post but lost it! Serves me right as I had just said how I had learnt to use a computer so I could do my own posts. Well I am not as good as I thought I was.
My bones were in a sorry state and I started biphos this May I am now feeling the benefit of it. Before biphos I had several treatments of radio therapy which worked well so maybe you could ask your mums onc about her having it on her hip?
I was on tablet chemo(capecitabine )for 2 years and I had really good shrinkage. It for me was the easiest chemo didnt lose my hair and was able to plan for holidays etc on the week off.
Hope your mum is able to follow a successful treatment plan I know it all looks pretty bleak in the beginning but it is amazing how much can be done to extend our life.
I am so sorry about your situation. It must have been a huge shock for you - especially when you thought it had been almost beaten. My Mum had low grade diagosis in June. The sentinal node was positive so she had all the others removed and they were all clear. We were so happy and I think on reflection I am now catching up with myself after the most traumatic year of my life. I also had a miscarraige of twins before this in March so I hadnt had chance to get over that really. Its only now, 6 weeks or so after mums radiotherapy finished that I am wondering if it will come back. I had kind of convinced myself its all over now and we can all get on with life. You must be devastated, I would be. There are lots of people on this site who live with cancer and my mum met one lady who had fought it off 6 times and was still going strong. But when its your Mum its not the same.
I dont know what advice I could give you apart from you must try and take care of yourself. This site is fantastic though - always someone to give support at any time of day as you know. I just really really feel for you and hope that your Mum is coping and gets good treatment.
Mums can try and protect us by sparing our feelings and other times blurt out things that are heartbreaking.
I wish you and your famiy the best possible future xx Love and hugs Suzy
Thanks for all your comments ladies. For me it has got worse recently. I am not coping with my Mum’s illness and its affecting my new marriage.
As I said previously my brothers do not seem to understand the severity of the situation. We have recently moved my Mum from the top floor bedroom into one of my brothers bedrooms. We removed carpet, painted the walls, skirting boads, moved furniture from room to room etc. Whilst one of my brothers helped, the other one sat on his backside playing the X Box. I have asked both of them to help my Mum more as they live in the house with her. One says he doesn’t know how to do things (such as ironing her clothes), and the youngest (20) says he is not around much to help. My husband put her new furniture together, which is great of him to do. However, I cannot help but feel really annoyed that my Mum’s own sons do not want to do this for their mother. It makes me so angry. I seem to be seeing them both in a new light and its not a good one. I keep saying they need to help more, but my parents make excuses for why they don’t help. I could never do that to my Mum.
I try explaining how frustrated I am with the situation both regarding my Mum’s illness and the selfishness of my brothers to my husband and its coming out wrong. He is doing all he can to help her, and I get angry with him because my brothers don’t help him. And then to take the biscuit, one of my brothers and my Dad took husband out for a drink on Friday night and asked if our marriage was OK as brother was worried. It would be a lot better if they started to act their age, and helped my Mum. My husband did say I was struggling with Mum’s illness but not sure what response he got as I got so angry that they spoke about me like this behind my back, that I didn’t get the rest of the conversation.
All I want is for them to wake up and realise this is real. I think they are all in denial. I told the youngest one to stop treating Mum like dirt as one day she won’t be here to apologise too. It went in one ear and out the other. I just don’t know what to do about it now. Sorry about the rant, but I feel like I am speaking in an alien language when talking to family and husband as they just don’t comprehend what I am saying.
She has now started her oral chemo, so I really hope that starts making a difference for her and takes away some of her pain. I hate seeing her in pain. She is the strong one in our family.
I completely understand how upset and angry you are feeling, but it sounds as though your husband is the good guy in all this and you really don’t want to put him offside. Your brothers are typical of young guys who have never had to do anything at home and completely take your Mother for granted - as many many young people do. They also may not know how to cope with all this and are just in denial about it. You and your husband need to be a strong united team to be the very best help for your Mum, and the best support for you too!
I completely understand how frustrating that is! My sister was exactly the same. She was 21 when my mum died and was a nightmare. Really moody all the time and spoke to my mum like dirt. She too didnt realise the severity of the situation and didnt think to be a bit nicer to my mum. I remember 2 times when it really came to a head. The first was the xmas before mum died (she died in the August). We went to midnight mass and I knew it was the last one that my mum would go to. My mum wanted to go up and take communion, and I thought that we should go with her, but my sister wouldnt and it really got on my nerves. I called her some names that I cant repeat on here and we really fell out over it. Then in the July before mum died we ran the race for life. Again knowing that my mum wouldnt be around the watch the one the following year I did loads of training for it but my sister couldnt be bothered. We started the race together and she said that she wasnt going to bother to run as it wasnt that important! So I punched her in the middle of the race and ran off without her. She also lived at home and did nothing for my mum.
Try and just focus on your relationship with your mum. My sister now feels really guilty about how she treated my mum, but I have tried to assure her that she wasnt that bad (even though she was) as she has enough to deal with as it is. Your mum will understand why your brother is acting the way he is. When I mentioned to my mum about it she just said that she wanted my sister just to be able to carry on as normal and didnt want her to have the worry of it all.
Of course it is affecting your marriage, it really affected mine as well. I didnt talk to my husband about it, as I already mentioned before he just said that everything was going to be ok! For the year before she died I was an emotional wreck and after she died I had so much anger I didnt know where to direct it to, and it went on my husband. My mum died 2 years ago and to be honest I think we are only just getting back on track. For most of that time I havent had any time for him as I have had my own stuff going on and although we are really happy together the last few years have been tough, and we both admit that. But always in the back of my mind I knew he wouldnt leave me and we would get through it eventually, it just needed time. Its such a massive thing that is happening in your life its hard to try and focus on anything else isnt it. Your hubby sounds fantastic, just like mine, and will do whatever he can to support you, I am sure you can rely on him totally and that is such a bonus.