Im 29 and have just been given the dreaded news that my cancer has come back and has now spread to my liver and lungs.
I was diagnosed with BC back in dec 06 - 1 year after i got married - went through FEC and Taxtoere for 5 months, had to have a mastecomy in the left breast and a course of radiotherapy. Got on with my life for the neat few months and booked a holiday in Jan but a few days before i found a lump which turned out to be cancerous again. So i had to cancel my holiday and undergo a CT scan which showed the cells have travelled to both my lungs and my liver.
I was very angry and upset that the doctors didnt pick it up earlier (as i had gone to the doc a few weeks earlier with a smaller lump and was turned away). They reffered me to a consultant in HArley street in london for a second opinion.
As i a have a triple negative disease, not responsive to the hormone drugs avaliable, they suggested that i have Avastin with Carboplatin and Gemcitibime.
Took my first dose yesterday, wasnt as bad as the FEC and Taxotere, they said that the side effects arent as bad, my hair which has come back will probably thin out. I still have my wigs if i need them!
Of course im upset and cant believe its happening to me again, but im determined to beat this and atleast add a good few years on my life. I definatley want to have a family so im hoping i can live to see them grow up and live with them until they can fend for themselves. But that all in the air at the moment. I keep wishing.
Sorry i know its long, just too much to say. If anyone else has been through something similar or taking the drugs i am it would be great to here how your doing and some advice.
I am very very sorry to hear about your rapid progression.
I have just started a course of carboplatin and gemzar (not the avastin) for a regional recurrence (triple negative) in my neck and chest wall. Unfortunately my second dose has been delayed because my blood platelets are too low…apparently this is a quite common side effect. Most people don’t lose their hair (mine is a bit thin but that happened while on 2 other drugs…vinorilbone and xeloda). I was very tired fro 3 days but no nausea or sickness…I have had AC and taxotere and yes they were both worse for me in side effects.
I am much older than you but there are lots of younger women on this forum (see long thread about liver secondaries for example.) I hope you will soon get lots of replies…there are some very strong women who will help and support you at this horrible time.
I’m sorry to hear of your recent secondary diagnosis, as Jane has said I’m sure you will receive support and help from the other forum members. You are also welcome to join our secondary live chat session on a Tuesday evening, it is facilitated by an expert moderator and a nurse who are on hand to point you to sources of help and information and it also gives the chance to talk to others in a similar situation.For further information contact the helpline on free phone 0808 800 6000 or see the link below breastcancercare.org.uk/content.php?page_id=6218
Thanks Kate, i just missed yesterday’s but was back quite late from the hospital and really wanted to flake out on the sofa! Hopefully i will be able to signup next week.
Jane, i have looked at other threads and i am really impressed with all the information on here. I was diagnosied in dec06 and wanted to fight this myself and didnt really seek advice and help from others, reading the threads gives me some idea on what to ask the docs as sometimes im just walking in the dark. Have you had a scan result back yet?
Thanks and i hope to get in touch with others on here.
I have lung mets -diagnosed 10 months ago at the same time as my primary, and know the shock and anger is indescribable. I ahve not had chemo yet, as am HER and O positive, but will be starting taxotere soon as although lung mets seem to have shrunk, breast tumour isn’t. And although its crXXp, I am still managing a relatively normal life.
Good luck with your treatment, and keep us posted.
Nicky
Am so sorry to hear your news about your secondaries and the fact that you are still so young. I hope that your treatment works for you.
I am 39 with 2 children under 4 and have just finished 3 x FEC and 3 x Taxotere in December and am now on Herceptin, had 2 lots so far. I have liver mets and was dx in July last year with bc and then told 10 days later had already spread to my liver. I have an appoint. next Friday with a liver specialist to find out about ablation or resection, my oncologist does not agree with surgery if got secondaries, but I need to find out.
If you look under the “anyone else with liver secondaries” there is a little bunch of us supporting each other, and we actually met up last week for the first time in London, and you are more than welcome to join us. And as you are so young, you should look under the “younger women” forums too, not sure what threads there are on there, but worth checking.
I manage to live a normal life, as I have to, with the little ones. They show me no mercy I have to say, which is good though.
I am sure that there will be others here to support you on the same type of drugs and can help with side effects too.
I don’t have secondaries but am 29 too, saw your post and couldn’t not reply to tell you how sorry I am. It’s total cr8p this bloody disease it really is. I was diagnosed in Feb 07 so not long after you, had mastectomy, FEC, Taxol, Herceptin and rads.
I was scared of this forum to start with as didn’t know how much I wanted to know. But I do look at the threads as they come up and have read quite a bit on the secondary forum and the ladies on there have really helped me on occasion with their knowledge, strength and positivity.
I am sure people with much better knowledge than me will reply, but I just wanted you to know I was thinking of you and sending every good thought and wish
Don’t really have any advice on the liver and lung secondaries for you but just wanted to say hello as I’m the same age as you and I was diagnosed with bc and bone mets in August last year so I know what you’re going through, it truly is a horrible feeling. I’ve had FEC, a left mastectomy and I’m currently on taxotere (which makes me feel rubbish!!). Everyone at the hospital I go to seems really positive which keeps me going but all the same, I still have hard days.
Like Dawn says, you will manage to carry on as ‘normal’. I’m still working full time which I find helps me to take my mind off things a bit.
Any time you want to chat, feel free to get in touch through the private messaging function on the site.
Hi Hemly,
I am so sorry to hear about your recent secondaries diagnosis, after such a short time post-treatment. I’m another one with liver secondaries, who posts on the liver thread. I, like Dawn, found out soon after my diagnosis with BC (March 07). Sometimes I feel so robbed - we should have been able to expect a few good years at least.
I had a WLE then chemotherapy (FEC then Taxol with Herceptin, when the FEC messed up my white blood cells) which finished in November. Now I’m on Herceptin and Tamoxifen, as I’m HER2 positive, and hormone-receptive. I’m on these indefinitely to keep the b*ggers down.
Do join us on the liver secondaries thread, and use these forums to ask away about anything you need to know, or to sound off about your situation.
How’s your husband taking it? They’re funny creatures when it comes to emotions - never seem to react how I would think is ‘normal’!
All the best with your treatment
love Jacquie
I am also another one with Lung Secondaries. I am 34. I was diagnosed in may 2005 aged 31 with Breast Cancer. Had Partial mastectomy, Ld recon, E-CMF chemo, rads and Tamoxifen. Then had regional recuurence in August 2006 and commenced the dreaded Taxotere and Herceptin and Arimidex with Zoladex. Diagnosed with Lung Secondaries April 2007. Ive been on clinical trial for tykerb and xeloda but that didnt work. I’m now having Vinorelbine and Herceptin. I dont know if its working as yet until i have my scans.
I can remember feeling the whole of my world had collapsed when i was told, i didnt know how i would cope, but as the days goes on you do learn to cope and life continues although its very different - for me anyway.
I admire your spirit and great attitude in that you say you want to beat this… well i’m with you all the way there… i intend to live my life to the full and be around for as long as possible.
having secondaries is awful for anyone but i have found it particulary isolating having secondary bc at a young age. Unfortunately we seem to be a growing bunch, this site is wonderful and i have had a great deal of support from it throughout my bc journey.
there is another site which is also very useful but i’m not allowed to mention it on here i dont think, so if you like, i could PM the details to you.
I am in a similar situation to yourself, I was diagnosed at 36 (in 2006) and have just been told that I have secondaries, I found a lump in my chest which had spread to my lymph glands in my neck - after further test it was confirmed that I have it in my lungs and liver. I have 2 little girls just about to turn 9 and 6 and am also desperate to be hear for as long as possible to see them grow.
It would be great if we could keep in touch, I have been trying to find someone on this site that has a similar dx to myself.
I am due to get taxotere on Wednesday in Edinburgh - have you had that? The first time round I got EPI/CMF