Breast Cancer Now Forum

Hi Sarahlouise,   I proactively asked my onc if I could have them out and I am seeing a gynae in a couple of weeks. The thought of being less of a woman didn't enter my mind.   My view is that effectively, my ovaries are trying to kill me so I want them out! I was also approaching the menopause so I would rather know that I was out the other side - my worst case scenario would be I had to come off the Zoladex because it had stopped working and then having to go through the menopause naturally. The added bonus for me would be no more worries about contraception.   I guess it might feel different for women younger than me but that's my twopennyworth.   Good luck,   Marion ... View more

Hello Louis,   I'm so sorry you're feeling this way.You seem to have had to cope with such a lot over the past few months, it's not surprising that something's got to give.   If you're suffering from depression then you can't just 'pull yourself together' and look at things in a positive light. It's going to take time and I hope the treatment you are getting will help you. In the meantime, this forum is a great place to rant and rave and get support as people usually understand how you feel.   It IS good news about your scan results. Noboby - cancer or not - really knows how long we've got. I know it's really hard but try to focus on one day at a time and don't let worrying about the future spoil the time you have been given now.   All best wishes,   Marion ... View more

Hi Karen,   So sorry you're feeling this way.   There's another thread on here about tumour markers that might help - they are not always the be all and end all.   Is your onc sympathetic and approachable? If not, it might be worth changing to someone else. And maybe speak to the BCN - some hospitals have one specially for SBC - who will have more time to listen to your concerns.   Take care of yourself,   Marion ... View more

Hi Harmony,   I really hope it turns out to be a false alarm but here's my story in case it helps.   My primary DX was in 2003 and after recovering from treatment I tried to put it to the back of my mind. During the summer of 2015, I had a persistent cough and was eventually diagnosed with lung mets in October (and later with a small amount of bone mets too). I have been treated with Zoladex (to stop my ovaries producing oestrogen) and Anastrole (to stop my body converting androgens to oestrogen) which both starve the cancer. I also take Denosumab and have had some radiotherapy - both for the bone mets. Anyway, the good news is that my cough stopped within weeks and within a couple of months, the mets in my lungs shrank. I have been having three monthly scans for the last year, and to date, the cancer hasn't progressed any further.   Hope you get some answers soon - and we'll be here if you need us.   All the best,   Marion ... View more

Hi Mammydeb,   Gosh, you've really been through it haven't you?   I'm not an expert but it doesn't sound like a big rise in your tumour markers. A lot of oncologists don't seem to set a lot of score on them anyway, the scans are a better indication.   Waiting for the results is horrendoust! You can't help picturing all the worst case scenarios can you? But there are a lot of ladies on here who have been living with SBC for years and you responded well to treatment so here's hoping.   Anyway, you're in the right place to get support - maybe you could join the Scanxiety thread on the Living with Secondary Breast Cancer section where people share their worries about their scans and celebrate when someone gets a good result.   All the best,   Marion ... View more

Bumping up for Nanof three ... View more

Hi Nanofthree   So sorry you're in that waiting and worrying place.   It seems that most oncs in the UK don't rely on tumour markers but focus on the scan results so I would say the fact that there was no progression last time is a good thing and hope you get equally encouraging results in two weeks.   I know it's almost impossible to stop worrying in the meantime so it might be worth posting on the Scanxiety thread to get support from other people waiting for results. I'll also see if I can bump up a previous thread about TMs.   Best wishes,   Marion ... View more

Hi Flowerpot,   Sorry you didn't get the results, particularly as you are struggling with your breathlessness. Waiting's bad enough without feeling rotten too.   Hopefully once they've got your treatment sorted, you may see an improvement in your lungs fairly quickly (I did) so try to go with it for now and use Christmas as an excuse to stay on the sofa!   Maybe you could use some of the time to research the different treatment options so you are prepared when you see the onc and can get started straightaway? There's info on this website and / or ask on here if you have any questions.   Hang in there,   Marion ... View more

Hi Flowerpot,   So sorry you've had to join us - and at this time of year too. Glad you've got a proactive BCN though.   I have more or less carried on working full time but I am lucky that my employers are flexible and I can work from home sometimes which helps me manage fatigue. In case you don't know, cancer is counted as a disability under the Equalities Act and employers have to make 'reasonable adjustments' to support you. There is more information about it here - http://www.macmillan.org.uk/information-and-support/organising/work-and-cancer/information-for-employees/your-rights.   Hope you get some answers soon - we're here if you need us.   Best wishes,   Marion ... View more

Hi Wendb,   I'm so sorry you're having to deal with such a lot. You've come to the right place for support though - there are lots of people here who will understand how you feel and who can give you good advice. Ask lots of questions, and look at the Bone mets, please join in thread. It might also be worth asking if there is a specialist secondary breast care nurse at your hospital.   My original primary diagnosis was eight weeks before my wedding. I'm so glad my husband wanted to carry on and he has been a great support to me. We thought we'd beaten it but it came back last year (12 years on) and it's really tough going through it again isn't it? It's going to take time to get your head round it. The most important thing to remember is that this isn't an automatic death sentence, it is possible to live with this for years. And things will get a bit easier once you have a treatment plan in place and start to feel a bit more in control.   If you have got to have mets, bones is the best place for it to be - it's very common and there are lots of treatments out there. You will probably be offered radiotherapy and a drug called Denosumab which stops the bone breaking down. If your cancer is hormone-receptor positive, you will probably be put on hormone therapy first rather than chemo.   Best of luck and virtual hugs and please let us know how you are getting on.   Marion ... View more

Hi Spudgirl,   According to the Cancer Research website, this could be a symptom of your mets or due to something totally separate like a chest infection - http://www.cancerresearchuk.org/about-cancer/type/secondary-cancers/secondary-lung-cancer/   Either way, if it were me I would want it to be checked out - there's not much point starting chemo if your body's not up to it.   Good luck,   Marion ... View more

I saw a good presentation from a physiotherapist at a BCC information day. Her general advice for bone mets was:   taking measures to avoid falls is key avoid contact sports / activities with an unmodifiable risk of falling over avoid activities that may require you to react quickly e.g. catching fast or heavy objects (netball, cricket) If the spine is affected, avoid large movements of the neck/back such as going all the way forwards to backwards, large twists, combined movements If an exercise involves the same movement as everyday activities then it’s no riskier than those tasks.   It might be worth asking your BCN to put you in touch with a phsyio at your local hospital to get some more tailored advice.   Hope that helps,   Marion ... View more

I'm lucky enough to still have both my parents. They have been really hit hard by my diagnosis a second time round, particularly as they are older and further away than when I had my primary dx. They still want to do all they can to help - I think it is partly their way of coping and partly because I'll always be their child that they want to fix things for (even though I'm nearly 50!) I suspect there is also an irrational element of guilt / wanting it to be them not me.   If you do have a good relationship, or one you want to repair, then it's worth accepting the offer if it's kindly meant. Some people are better at showing love through practical action rather than words - for example, If your dad is handy, is there anything around the house that he could fix for you? ... View more

I agree with all the advice that's already been given. I'd also add the following:   more people don't develop secondaries than do the science has moved on considerably since a lot of us were first diagnosed (my primary dx was 2003) I only took tamoxifen for five years - it is now recognised there is less chance of developing secondaries by staying on it longer don't let what might or might not happen in the future spoil today - take this as a wake up call to make the most of every minute, spend as much time as possible with loved ones and let them know how much they mean to you   ... View more

Hi Sarah,   Really pleased the treatment is working for you.   I haven't had chemo this time round (yet). I'm on hormone treatment instead. My cancer is strongly oestrogen receptor positive so I have a four weekly injection of Zoladex to stop my ovaries producing oestrogen and also take Anastrozole which stops my body converting androgens to oestrogen - so basically just starving the cancer. Initially this helped shrink the nodules in my lungs and the cancer hasn't grown or advanced any further so it's working for me so far.   Because I have bone mets, I am also taking a drug called Denosumab which helps stop the bone breaking down.   Breast Cancer Care organise monthly meetings for secondary ladies in Oxford - I found it a good place to get information and meet other people like me. They usually advertise them on here or you could call the help line and ask to be put on the mailing list. You can also use this forum to get to know people a bit better and then decide whether you want to meet in person.   Best wishes,   Marion ... View more

Hi,   So sorry you've had to join this club. I'm in North Oxfordshire so not too far away.   I was diagnosed just under a year ago with lung and bone mets (12 years after my primary) so I have an idea of how you might be feeling. It's a huge thing to take in but it does get a bit easier as you get into the routine of treatment and develop ways to cope.   This forum is a great place to rant and rave and get advice from people who know what it's like. The best place to chat or ask a question is on the "Bone mets please join in thread" which is under the Living with secondary breast cancer section.   Best wishes and hang in there!   Marion   ... View more

Hi Abney,   Sorry you've had to join us but you have come to the right place for support!   I was diagosed with lung mets almost a year ago. At the time I was coughing really badly. As the cancer has responded to treatment, it's got so much better. But at the time, I was prescribed some coedine linctus which did help. I don't know if it's compatible with your chemo but it might be worth asking.   Hang in there!   Marion ... View more