Secondary BC at the age of 39.

I had breast cancer in 2010 aged 37 which had spread to my lymph nodes. Had double mastectomy and node clearance. Had chemo and radiotherapy which finished christmas 2010. Then last month I found a lump in my armpit which turned out to be cancer again, but it had also gone to my Liver and lymph nodes in my abdomen. I will start taking Capecitabine hopefully on Friday. The cancer is not operable or curable. How can me and my husband learn to come to terms with this and carry on with our lives as normal as we can??? Is there anyone in a similar situation?? Feel so alone and very scared. x

Hi

just bumped the replies to your other post

i just want to send you a big hug.

dx

There are several ladies on this forum who have been on capecitabine long-term, with much success. Fingers crossed it works well for you too. Hopefully they will see ur post + offer you some reassurance soon.
All the best x

I just wanted to send you a big virtual hug and to say I can remember feeling the similar sense of shock,bewilderment and fear when I was diagnosed with secondaries in both lungs and around my collarbone at 38 in 2008(nearly 6 years after primary diagnosis).I was on taxol chemo for a total of 9 months following that diagnosis and that was 3 years ago now and since I finished the chemo in Nov 08 my scans have been showing clear. I am still on Arimidex and Zoladex and know that I will have to goback on chemo at some point but I have been truly amazed at what has been possible over the last 3 years and have learned to just cope with things as they come and not to think too far ahead. It’s important to have things to look forward to - even the simplest thing - in the short term and to accept and ask for help when needed.
Thinking of you but it is still possible to still live “well” and enjoy life with secondaries. Hugs xx

Hi i was diagnosed last year with secondary to the liver at the age of 35 im on Herceptin every 3 weeks it is stable at the minute.Have a scan next week to see how things are you do learn to live with it.Very hard at first but it will come. Take care Lindsay xx

Hi,

I’ve posted on your other thread, but saw this one and just would like to add a few details around my liver mets diagnose because it’s very similar and I can really relate to how you are feeling. (My medical history is on my profile by clicking on my name.)

After 2.5 months on tamoxifen, I felt a lump in lymph node. Booked an appt with onc but was asked to come back in a month time. When I saw him again, he decided that tamoxifen wasn’t working as well as hoped, so decided to add Zoladex and sent me for CT and MRI scan to double check. Easter holiday caused further delay and by the time the results finally came back, to our horror and disbelief (yes, my onc was quite shocked, too), it showed 2 ugly mets in the liver!! Tamoxifen and Zoladex were scrapped and I had no choice but to go back on chemo. But I wasn’t sure to go back on FEC chemo just after 4 months break. I didn’t know how I would cope physically or emotionally. I thought I won’t live for very long. I felt awful on FEC and wasn’t sure how many more cycles I would be able to manage. But here I am today telling the tales and my liver mets? Only scars left.

Things helped me to cope along the way:
forum - I come on almost everyday unless I’m away on holiday
helpline - brilliant for unloading and they’re so supportive
family - they can be really annoying and but can be very helpful, too
friends - I have a few close to my heart that will always be there for me (virtual and in real life)
psychologist - I recommend it 100%. It’s what made me turn the corner to adjust my expectations and live with secondaries.

Sending you a gentle hug because no matter how much help you get, it’s still a very hard journey. The help along the way does make the journey a bit easier and make sure you accept them without hesitation.

I’m now on Capecitabine, too and just after 2 cycles, my tumour marker has nearly halved, so that’s something positive for you. Hope it works just as well for you. Hope you’ve started Capecitabine now, let us know how you are getting on with those tablets.

Any time you need anything, may it be a question, or just letting off the steam, you’ll always find a listening ear on here.

Take care. M xx

P.S. sorry for long post. Hope you find some of my experience helpful.

Hi Syannybrown

Sorry to hear your news and know how it feels. I was diagnosed with secondary breast cancer from the start in June this year (I’m 49 and had a routine scan). I have liver, lung and spinal mets. Have had 3 FEC and had the first of 3 TAX today.

Just wanted to agree with all the things that m1yu has suggested. If there is the option of seeing a psychologist (breast teams can usually refer) I would definately do that.

Also wanted to recommend the ‘Living with secondary breast cancer’ day that is a free 1 day course run by BCC in different areas of the country. I have had very little support from the team at my hospital who seem to be very good at supporting primary women but not so hot on SBC. I went along to the day in Birmingham yesterday and met up with 13 other women with SBC. There was a talk from Maria, a SBC nurse specialist outlining treatments and a couple of other session on managing fatigue and relaxation. Maria was around for the whole day and was fab at answering questions. To top it all there was a really amazing lunch which was a real treat - very important to do treats! You can find out details about the days on the site.

The one thing that I have found really helpful is learning to meditate. I don’t have a faith myself but have been interested in some Buddhist ideas, especially the idea of breathing and staying in the present. Every time I get panicked, overwhelmed and start thinking about the ‘what if’s’ (my husband, kids, dying etc) I stop and concentrate on my breathing “Breathing in, I know I am breathing in” “Breathing out, I know I am breathing out” At that point, it’s all I have to concentrate on. If you think this might be useful, I would recommend Peace is every Breath by Thich Nhat Hahn. You can also have a look at his stuff on Youtube.

It’s still early days. You will both find a way of coping with it. It’s not a death sentence, it’s a stupid bloody complication!

Read some of the good stories on this forum and hold onto hope. And remember, there is no such thing as a stupid question, so hope you will come back and ask if there’s anything you need to know. There is a huge amount of experience and compassion here.

Love & hugs
Laurie x

Would just like to say a big thank you to everyone who replied. It’s very humbling to think that there are people like yourselves who take time out and reply to messages. Thank you for your support. Just a quick up date. I have now been on capectiabine for a week now and so far no bad side effects apart from lose of appetite. My emotional side has improved too, at first I couldn’t stop crying but now I feel much much stronger and my fight and inner strength that I had last year has returned…for now anyway!! Just hope that this drug is working and shrinking the tumours. xxx