Introduction - for those with Secondaries

Re - London -yes I’m going and hoping to meet people from this site and bcpals site. I’ve been posting for baout 2 yeras now and would like to actually meet people who I post to!!
Re- Gobby Gang - this started from a thread on the younger women’s part of the forum where someone asked if anyone was going to exeter for the younger womens’ forum in Exteter in Oct 06. Some of us had already met each other or been in email contact from the old days where you could personally email each other via this site or from the BCC phone groups.
Basically the Gobby Gang started in Exeter on a BCC course - we were the ‘loud’ table that you always get on any type of event like this. We had arranged to exchange mobile tel numbers at the hotel and so all went out for a meal on the friday night and stuck together after that.
You can see our thread on the Younger Women’s part of the forum and are aware that we have a lot of people who read our posts so we are careful not to name our children etc and email personal stuff rather than have it all in the public domain. Unfortunately, we lost one of our members this May to this disease so we are a very close group. We meet up regularly and text each other a lot especially if one of us is having a bad time.
I think it would be helpful to have something like our Gobby Gang thread here on the secondary forum as you can then share your experiences of symptoms, treatments, feelings and generally how your life is going. Perhaps, I’m just a nosey person but I enjoy getting to know people by regularly having contact with them via the forum or meeting them at events run by the BCC so hope there are lots of people here who are going to London and if we get on we can keep a thread going/email each other or if not going to London but want to join in then we should all make each other welcome in joining in the thread as we do need each other for support and advice and sometimes just to share other non-cancer news!!!
What do others think?

Hi Kate

When and where in London is the next forum thing on and what happens at these. Would like to know, not sure if can make yet, as depends on date etc, for getting children sorted out, as not got family close by and all my friends are popping out their 2nd babies!!! If you could let me know, would appreciate it.


It’sd on the 24th October so for me it’s half term week which is a real pain. It’s held in Westminster Hall between 5 -7pm. You need to contact <script type=“text/javascript”>eval(unescape(‘%64%6f%63%75%6d%65%6e%74%2e%77%72%69%74%65%28%27%3c%61%20%68%72%65%66%3d%22%6d%61%69%6c%74%6f%3a%63%68%72%69%73%74%6f%70%68%65%72%71%40%62%72%65%61%73%74%63%61%6e%63%65%72%63%61%72%65%2e%6f%72%67%2e%75%6b%22%3e%63%68%72%69%73%74%6f%70%68%65%72%71%40%62%72%65%61%73%74%63%61%6e%63%65%72%63%61%72%65%2e%6f%72%67%2e%75%6b%3c%2f%61%3e%27%29%3b’))</script>
to book a place - the more the merrier I think!!
I’ve never been to a meeting like this - the ones I’ve been on before have been residential and more information given rather than asking for our opinions so will be a new experience for me as well!!!
Moderator - where is this event being marketed cos I found out about via bcpals and not yourselves?
Hope to meet you soon anyone going.

Dear Kate

I’ll check this out and get back to you in the next few days.

Kind regards
Breast Cancer Care

Hi Kate

I would be interested to find out more about London.

Can you take a freind or relative or do we have to go on our own?

How do I find out more about it and what happens there.

Hope you dont mind all the questions

Fay :o)

I think if you email christopher on the email address given in my previous post, he will be able to answer your questions as although i’ve got the bumpf about the event and what the aims and objectives, speakers/panel are I don’t know anything else about taking someone with you. sorry - but glad there seem to be so many people interested.
It’s a shame it’s on at half term as I expect there are women who want to go but are going to be stuck about childcare or will be away!!

The event in London is the first Campaigning Event of the Secondaries taskforce. Patients, MPs, policy makers expected. Joan Bakewell chairing and the Cancer Director Mike Richards will be there. Main aim seems to be to sign up to Stand up and be counted campaign…calling for collection of data on incidence and survival rates for secondary breast cancer.

Looks like interesting event but it will be stage managed. Good I think its during the dreaded October…good to get more publicity for secondary bc. Most events during pink October focused on primary bc issues.


Dear Forum members,

Hi All

The Secondary Breast Cancer Taskforce is delighted to announce it will be holding its first campaigning event Time to be heard: Giving a voice to people with secondary breast cancer in Westminster on the 24th October, from 5-7pm, in the Robert Perks room, Westminster Central Hall.

The aim of the Taskforce is to improve the treatment, support and care of people living with secondary breast cancer, and this event is a unique opportunity for patients, health professionals, policy makers and MP’s to come together and share their views on how this aim can be achieved. The event will also be an opportunity to learn more about the work of the Secondary Breast Cancer Taskforce and meet Taskforce members.

Two of the Taskforce’s key priorities will be raised at the event; the need for cancer registries to collect data on the incidence of secondary breast cancer, and the need to ensure all secondary breast cancer patients have a key worker.

If you would like to attend Time to be heard, please contact Chris Quince, Policy and Campaigns assistant, on 020 7960 3569 or <script type=“text/javascript”>eval(unescape(‘%64%6f%63%75%6d%65%6e%74%2e%77%72%69%74%65%28%27%3c%61%20%68%72%65%66%3d%22%6d%61%69%6c%74%6f%3a%63%68%72%69%73%74%6f%70%68%65%72%71%40%62%72%65%61%73%74%63%61%6e%63%65%72%63%61%72%65%2e%6f%72%67%2e%75%6b%22%3e%63%68%72%69%73%74%6f%70%68%65%72%71%40%62%72%65%61%73%74%63%61%6e%63%65%72%63%61%72%65%2e%6f%72%67%2e%75%6b%3c%2f%61%3e%27%29%3b’))</script> . If you would like any help with travel costs in order to attend the event please let us know in advance by contacting Chris by 8 October 2007. Please note we are happy to help with travel for anyone attending who has been diagnosed with breast cancer. If you need to bring a guest with you due to health reasons we can also assist with their travel costs. We are happy for people to bring a guest to the event as long as they let us know in advance so we can keep an eye on numbers.

Further details about the event will be appearing on our website shortly.

With kindest regards
Dora Wheeler, Secondary Taskforce Project Worker

hi this a great idea , as i am so forget full now days .
My original diagnosis was Oct 2003 and I had a mastectomy with removal of axillary nodes, these were all clear. I had no node involvement, had radiotherapy ,Zoladex and Tamoxifen, which was later switched to Exemastane then arimedex which worked for 18 months. I also asked for my ovaries removed but specialist advise me not to and stay on zoladex.In October 2005, I was diagnosed in with bone secondaries and have rads 4 times as spine cancer has progressed, however i am currently on Faslodex and no longer on zoladex. I have 6 monthly CT scans and MRI, the results to these last week where good stable for 6 months. i was so glad (over the moon).
I no longer work, decide family was more important have 2 children for whom this has all been very difficult and a supportive and no partner.generally however we simply get on with life, and also stressing about sons GCSEs !!
and my daughters first year in senior school.
Best Wishes to everyone

just wanted to introduce myself
My name is Julie and I am 35 years old. I live in Oakley, nr Basingstoke, Hampshire.
married to my college sweetheart and have one gorgeous son aged 7
I Worked as a learning support assistant in a local infant school and Ran a brownie Pack but have given them both up to concentrate on family, my degree, singing and fighting this crappy thing
I am Vice Chairman of an (post edited by moderator to remove identifying details) Amateur Operatic SOciety -enjoy treading the boards once a year this is because I Love to sing -second soprano. started rehearsals last night -doing Oklahoma in February 2008 -Musical director has said he wants to see me on stage every night of the run!
Am currently Studying for a degree in Humanities with Open University .
Found my lump 31st March 2007, had lumpectomy and sentinal node removal on 1st May. 5 nodes involved. Oestragen positive. Grade 3 cancer (lump only 2cm), been told that its aggressive.
Starting chemo on 31st May. Have had 3 sessions of FEC and 2 sessions of Taxotere. last taxotere is tomorrow!!!
Went for my first chemo on 31st May to be told cancer has spread and now have secondaries in my hip.
Going to SOuthampton for rads on 1st oct -7th nov. then onto tamoxifen and continuing with pamidronate
I want to grow old with my wonderful husband, see my lovely son grow up, get my degree and continue treading the boards!
Good to read everyones hellos!

Hi Everyone

Haven’t been here for a while but here’s my history!

I’m 42 (!) and have a lovely hubby of 18 years and a lovely son who is 13.
I was first diagnosed in 2000 and had usual lumpectomy, chemo and radio. managed 4 years until I was diagnosed ith boney mets after complaining of backache that wouldn’t go.
After scan was also dx with liver mets. Had Doctaxol for that…Horrid but survived! Had a line for this as no veins and spent week in hospital as it got infected.
Given oral bisphosponates for bones as no veins and still on zoladex injections. Tried various hormone pills such as tamoxifen and aromasin but no good!
Liver clear, but then had barin scan just because they had ticked all the boxes. Found to have multiple lesions all over brain but no symptoms at all. Had WBR and have been unable to drive since.
Scans then clear but bone scan showed boney mets increased so now on Capecitabine. 11th course and all well so far. Had 4 clear scans in a row (over 12 month period), feeling really well and hoping this continues for as long as possible.
I was a teacher but took il health retirement as course of disease is so erratic I just couldn’t be as committed as I neede to be, plus i wanted to live my life with my family and friends. I love gardening and all sorts of art and now have plenty of time to do this and be there for my son and hubby.
3 years since I was dx with secodaries and life is good!

Love Kitkat

Hi everyone

I haven’t been posting lately - having a break from the forums - but I wanted to say hello.

I am 56 (nearly 57!!) and was diagnosed in 1994 with a small but very aggressive tumour. I had a mastectomy and reconstruction and life got back to normal and then in February 2003 I started feeling exceptionally tired and lost weight. After several false starts liver tumours were found and the chemo started but it didn’t hold and by December 2003 I was on Herceptin which has held everything in check ever since. I am ‘no observable sign of disease’ and life is good.

Like Kitkat, I took ill health retirement from my lecturing job and now can spend my time as I please with family and friends.

Blondie and KitKat…lovely to ‘see’ you. :slight_smile:
Great to hear you’re both keeping well.


Is anyone attending the Time to be heard: at Westminster on the 24th October, from 5-7pm.

It would be nice to meet you.

I have secondaries to the bones and lungs and am on Taxotere penultimate one tomorrow (if bloods are fine).

I have put my name down for this event, and am interested if anyone else is going.

Hope to hear from you soon.

Good luck jules will be thinking of you tomorrwo whilst I have my chemo. Hope you can make it to the meeting

Fay :o)

Hi Im Debbie - I joined the site 12 months ago when I was diagnosed but have never been brave enough to post though I have often read others posts. Today is 12 months since I was diagnosed with breast cancer with mets to Liver and bones (my dads birthday). I was 40 last month, and am married to a wonderful supportive man. We couldn’t have children and have done the whole IVF a few times -im sure the various treatments, including HRT havent helped as my tumour was hormone driven. I initially started with a bad back and neck pain and my lump appeared on my 39th birthday -some pressie eh! My GP was concerned beacuse I was also aenemic, and blood tests showed liver problems and so I was admitted to hospital. My diagnosis was a shock to say the least,and I was exteremly ill and so was given blood transfusions and started on oral chemo, which was then followed by 8 doses of FEC, when I lost my hair -though I count myself as lucky in that I wasn’t too ill during the treatment. This was followed by 15 sessions of radiotherapy, which wiped me out. I also take Ibandronic acid for my bones and tamoxifen. I wasn’t expected to make it and yet here I am and I have to say I am reasonably healthy -though not as fit as I would like. The hardest thing is not overreacting at every pain or ache, but I try to be positive at every level and turn a negative into a positive where I can, and I think this keeps me well. This disease is hard to bear at times, especially as I lost my mum to ovarian cancer one month after my diagnosis-she was only 59! but it does help to read so many positive stories of survival and long may it continue for us all!!! At the moment I am trying to persuade my GP to let me go back to work but he thinks as my diagnosis is terminal, though I am currentlyt stable -I should not have to work. It is very frustrating and I hope to change his mind soon -Life is for living isnt it- im gonna go insane sat here doing very little!!! Hope I haven’t gone on too long -I can talk for England I know.

I’m going - think we will need to put our ‘posting name’ on our name badges as well as our proper names so we don’t get confused. Looking forward to meeting anybody going.

Unfortunately not able to get to London to meet you all- in the middle of vinorlabine… and working part time… kitkat (if you dont mind me being nosey) can you let me know more about your liver mets as I have them too you will see my previous postings you say you are now clear and even the brain ones gone with the bone mets kept at bay with capcitabine. I also had 2 goes with cap but didn’t work 2nd time had Epi which didn’t work either…just waiting to hear how things are going when I have appt with onc in about 4wks. I must say that my liver is still causing probs… someone sent me info on liver ablation anyone know anything about it…

I did an intro post when I first joined but here’s an update in case any newbies want to know without searching the archives!

I’m 40 with a nearly 14 year old son, a nearly ex-husband and a new fiance in my life. Son lives with his dad but I see him several times a week.

I was diagnosed at stage IV in August 2006 - three lumps in left breast, two liver tumours and lesions on one rib and one vertebrae. I’m amazed how far it had spread with no ill-effects, I couldn’t find the breast lumps and all I really noticed was the painful rib without knowing what it meant. It was too late for surgery or rads to make a difference. I had six courses of taxotere, on the plus side I had a fairly easy time of it and managed to work some of the time. Downside is that it didn’t make much difference to the tumours :frowning: Now I’m having herceptin, pamidronate and tamoxifen with no troublesome side effects. I blame the tamoxifen for the weight gain, it can’t possibly be all the pies I’ve been eating ;o)

Other than that I mostly lead a normal life. I have carried on working, I spend time with my family and friends and have a busy social life.

I hope to be at the event on the 24th October, and I echo dippykate’s suggestion - we should have badges or stickers showing our forum names so we can put names to faces! Hope to see some of you there.

I’m 51, live near Chester (though a Scot from Dunblane), married to my rock for 32 years and three children, 31, 26 and 21, and the light of my life 2 year old grandaughter.

I was first diagnosed with a tiny (grain of rice sized) tumour in November 2002 after taking part in a screening trial for women aged 40-50, had a lumpectomy which showed it to be Grade 3 triple negative, all nodes tested were clear, had 6 weeks radiotherapy and sent home to forget about it. 11 months later in October 2003, after suffering excruciating back pain it was discovered I had mets to 2 vertebrae and 2 ribs, had 10 days radiotherapy and started on monthly Zometa infusions which are still ongoing.

The Zometa has slowed down the progression to my bones and today I have 2 vertebrae, 3 ribs and sternum affected, had another 5 days radiotherapy to rib area as was extremely painful.Had a follow up mammogram November 2005 which showed a recurrence, 2nd lumpectomy and total axillary clearance followed, once again grade 3 triple negative but all nodes clear, had another mammogram in June 2007 which was positive again and am having 3rd lumpectomy on the 27th September.

Because of other health difficulties medical team are extremely reluctant to try any chemotherapies so at present my only option is surgery, hoping that something can be worked out, though of course there may well come a time when the risk will be worth it.

Thank you for starting this Jenny, very useful whilst the profiles are missing, it is good to know a bit more about those you are talking to.


I am 55, married with two grown up sons. I was diagnosed with secondaries just after mastectomy nearly six years ago. Had mets to spine for four years and then in Nov 2005 this had spread to lungs and liver. Have had tamoxifen, arimidex, exmestesane, FEC, Taxotere, Capacetibine and am now on my 4th chemo: Vinorelbine which I have found the hardest to tolerate. Tumour markers down and hope to finish course at end of October.

Good to read other peoples’ stories and how we are all coping with this disease.