Help needed please so confused and worried

Hello fellow members I am new to this but have been reading some of the posts on here and wanted some help. It has been such an emotional roller coaster that I don’t even know where to start.
Basically I am looking for some advice for my mum. She was initially diagnosed in 2005 and had a mastectomy and 3 of the lymph nodes affected. We were told by the oncologist at the time that she is hormone positive and she will just be treated with hormone therapy i.e tamoxifen which needed to be taken for 5 years. This year in March she was discharged and was told that she is in the all clear. Then in June she had a fall due to a vertebra collapsing in her spine. On having various scans bone scan, MRI , CT she had widespread bone mets. Firstly they had to operate on her spine as a matter of urgency and was put on letrazole. Following this 11 hour operation which on its own was very worrying she is now recovering well from it and has had 10 sessions of radiotherapy to the affected area.
She has now had another CT scan which is showing progression into a muscle on her right shoulder side and some glands near the throat and in the chest but not the lungs.Also her arm is swollen due to the lymph.
The oncologist has advised that my mum is not responding to hormone therapy possibly also because the pathology report has suggested that even though she is positive they are very few receptors. So now she is due to start chemotherapy in the form of Capecitabine and then a further scan after 9 weeks.
I am so worried but desperately trying to be positive for my mum. I am so confused with all this I am not entirely sure why she wasn’t initially given chemo in 2005 and why she was discharged earlier in the year.
I’ve questioned the oncologist but they say this progression tends to happen in many people. I wasn’t entirely confident so I spoke to her GP in an attempt to try and get a second opinion from the Marsden but even she was saying that I shouldn’t go down that route as our oncologist is very good and that I shouldn’t really question her ability as she is an expert in her field. Which I am not disagreeing with but would still prefer a second opinion.
Also the treatment Capecitabine, is anyone else on this and does it work well.
If anyone has gone through anything similar please reply and tell me what you think and any advice. I know I have raised so many issues and concerns within this post but I am so confused. Please help :frowning:

Hi bm and welcome to the BCC forums

I am sure you will receive lots of valuable support from your fellow users very soon, in addition please feel free to call our helpline where you can speak to one of our team in confidence, they are waiting to offer you further support and information. the line is open 9-5 weekdays and 9-2 Sat on 0808 800 6000.

Here is the link to further secondary support for you and your Mum which you may find of interest:

Take care

Hi bm, Just seen your post, (I’ve been away and am just catching up). I don’t know if I can offer any advice, just thought it would be good to offer you some support. I too have secondary cancer in my liver and spine. The initial bc was 18 and a half years ago, so I wasn’t expecting this! I was dx’d in January this year and at the time was led to believe that I was ready to pop my clogs! However, after 12 sessions of Taxotere which didn’t work particularly well, I’m now on Arimidex for the liver and Bondronat for the spine which appear to be working well. I’m feeling quite good apart from the usual aches and pains from the side effects. (Problem with my teeth at the moment) However, although I haven’t had Cap myself, I know there are lots of ladies on this site who have experience of it and it is generally regarded as being a very good treatment. I am very sorry that the hormone treatment didn’t work for your mum. This whole thing is horrendous for everyone concerned, but your mum is very lucky to have such a wonderfully supportive daughter. I’m sure other ladies will be along shortly to give you encouragement. Please feel free to pm me if you wish. There is also another thread which is called ‘Feeling Low’. There are several of us who use this thread every day and we have all become firm ‘cyber friends’. We are always there to lend help and support and if you feel like ranting, then please go ahead and do so. We all understand perfectly.

I wish you and your mum the very best of luck in the future and I’m sending you both lots of hugs and love. Dianne x x x

Hi bm

I am so sorry that your mother is going through this but as my pal Dianne says she is lucky to have such a supportive daughter and not going through this on her own. I’m not hormone positive so can’t offer advise in that area but I’m sure other will be along to do so. Capecitabine seems to be an excellent chemo and there are many women on this site who have had success with it for many years.

I’m afraid I can’t answer a lot of your questions but earlier this year I was unhappy with some of my treatment (was seeing different onc’s and getting different advice about chemo) so I asked for a referral to the Marsden. Your mother is perfectly entitled to do this if you want to and there is nothing wrong with getting a second opinion. I found it very helpful and was given advise about chemo which I am now on in my local hospital, they were absolutely lovely there and I was considered for a trial which unfortunately I did not meet the criteria for but I was glad I had the referral.

You must be in turmoil at the moment and we all understand. Keep posting and as Dianne says visit us on the ‘Feeling Low’ thread, where we all support each other and hold each other’s hands. You will find the whole forum full of very knowledgable lovely women who will be able to answer all your questions. I do hope things get easier for your mum now treatment plan is getting put in place.

Lots of love Anne

Hi bm,

I’m so sorry for what you and your mother are going through. It’s not easy to try and be strong for someone you so loved, while you yourself are affected so much emotionally.

My bone mets was diagnosed with primary, so was put on chemo straight away. Then tried tamoxifen because I responded well to chemo and strongly hormone positive, too. Unluckily for me, it didn’t work at all and cancer progressed to liver just less than 4 months later! So, back again and started another chemo. Just finished that one and MRI + CT scan show really good news, getting the result of PET scan this afternoon!!

I believe that whether chemo is given or not partly depends on age, also the degree and stage of the cancer. Also, as I just said, Tamoxifen didn’t work for me, either. I was devastated at the time. I also believe March - June is a long time and there should be a scan in that time. There is so much myth in the “5 year survival rate”. I’ve read so much about people were taken off all treatment and were “ignored” and soon after that 5 years, things happen! Something should be done about this.

I’ve got a swollen arm due to lymph, too. So, I can sympathize with that, too. Not very nice! bm, if you’re not happy with her onc and if she’s not happy either, ask questions! Ask her onc to explain every decision she made for your mum, ask why!! If you and your mum are still not happy, you go, girl, get a second opinion and ignore what everyone else says to you. You’re entitled to do so.

Despite having had 2 kinds of chemo, haven’t try Capecitabine before, but it’s my next one in line, so must be effective. Heard a lot of good about it, so hope it does a good job for your mum, too.

bm, please come on here whenever you like to find support, we all understand what’s like. You’ve been doing so well for your mum and I’m sure you’ll continue to be a rock to her.

Take care xx


So sorry to hear of your mums diagnosis. I too have had surgery for Spinal Cord Compression due to bone mets in March this year and I also was put onto Capcetabine. I had a scan recently after 3 months on it and unfortunately I did have a little progression so I am now trying Vinoralbine which is another oral chemo. I know a lot of ladies have had good results with Cap and it is quite user friendly - I had very little in the way of side effects (mild nausea and some diahreah) and no hair loss, which is the thing we all dread about chemo. The tablets are quite big but apart from that its pretty easy to do. And should it not work, there are other options.

Best of luck

Thank you so so much for such lovely and kind words and more importantly some excellent advice. I am so glad I found this forum I already feel so much better and positive. So hopefully I can share this info with my lovely mum and give her the positive vibe to. I was so devastated yesterday and didn’t want mum to see it on my face, every time I was alone I would just break down and pray for a cure for this awful disease. But I am so grateful for all the responses so far I feel so much much better.
BoneyL I really hope the Vinoralbine works for you x.
M1yu you are so right about this 5 year survival rate and myth, I cannot believe that so many people have suffered due to this and something should definitely be done. So I am definitely onto it x.
Anne: I made an appointment with the GP today and I am going to make sure we get this second opinion and thanks for the confidence no harm in trying at least that way I will never think maybe if… x.
Awwww Diane I hope problems with the teeth get better soon and I am glad the Arimidex and Bondronat is working and hope it continues.

love and hugs xx

Hello again, would anyone know for whome cap has worked that did you feel any of your cancer symptoms getting better whilst on the treatment prior to a scan. And after how long after this treatment did you have a scan. Xx