I have had a terrible shock this Christmas, although it wouldn’t have been any less a shock if it had been some other time especially as I have been so fantastically well for almost a whole year. I finished my treatment in January 2010, I had Chemo, surgery and then radiotherapy and I thought that I was home and dry.
I am seeing my oncolgist on Friday morning and I am scared half to death, I am not even 50 yet and I have got so much that I want to do. If there are any ladies out there in a similar position I would love to hear from you as right now I can’t see beyond the next five minutes!
Dear Sallyspoon
I’m sure somebody will come along who can help you. I just wanted to reply to you to say I’m so sorry to hear this and I know it’s something we all dread and as you say just when you thought things were going ok and that you were home and dry. I can imagine your fear and really feel for you.
Hugs
Ruby
I am so sorry to hear about your diagnosis. What a terrible time of the year to be given the most devestating news.
It is very quiet on the site at the moment, again due to this time of the year.
There are lots of women with your diagnosis living full and active lives. This is not to undermine the black hole you are in. You are reeling with shock.
What treatment regimes are you going to start ?
I was diagnosed with bc age 33 (almost 34). I got my secondary diagnosis 8 years later. I have been living with secondary breast cancer in my spine and lung for 2 and a half years. At present I am on herceptin, femara, zoladex and zometa. My tumour was Er+ Pr+ and Her2+.
Please stay in touch. I know that lots of people will add to this thread and hopefully help you come to terms with this.
julie xxx
I am sorry to read of your recent diagnosis, As well as the support and experience you will receive from the other users you may find it helpful to order the BCC secondary resources pack and read the fact sheet on ‘secondaries in the lung’ If you would like to order these or read them on line just go to the following links:-
Also if you would like to talk things through or just have some extra emotional support please do give the BCC helpline a call where you can talk to a trained member of staff. The lines are open again tomorrow and the number is 0808 800 6000.
You are right. THis diagnosis is awful whenever it is delivered, April 4th 2007 will long remain in my mind as the date my primary was diagnosed and October 26th 2009 when my secondaries were diagnosed in my lungs, spine and liver! With an initial diagnosis of possibly less than 12 months to live.
I was 47 when first diagnosed, I am now 51 and I am still here and currently on my third chemo, Vinorelbine and Capecitabine. I too have a lot to live for, 2 smashing children and a wonderful husband, a lovely home, great friends and on, and on…so much I want to do and see.
You will get lots of support on here. If you have any questions ask away, there is always someone on here who has had the same/similar drugs/diagnosis and, whilst everyone is different, it can help to here positive stories and ideas on how to deal with some of the side effects we all experience.
My best piece of advice is to try and do something nice for yourself every day, even if it’s just a walk, lie down with a book etc. The other thing is it takes time to mentally process the information you have been given and get things into persepctive. For me that means not talking about it until I have processed it myself, as more time passes I feel more optimistic about hanging on for those moments that will mean so much…children off to Uni, seeing them happy and settled, whatever they decide to do…and spending quality time with my husband.
One more tip. I have written everything down in a sort of diary, what drugs, when, answers to questions etc and I have found it very useful to refer back to.
Hi Sally
So sorry to hear about your news but it’s good that you’ve shared it in this site. I find it really helpful to hear the encouragement from others. My way of trying to cope is to give myself some “my time” each day when I go off to do some relaxation or sleep or have a good cry in the bedroom for an hour or so and won’t let myself be disturbed - I just have to be able to get the tension out my system somehow and stress relief is important . I had a diagnosis just before Xmas of secondaries growing again so am heading for more chemo after 4 side-effect free months. It’s been hard but each day I’m feeling more able to cope and to accept that ongoing treatments are the norm and am trying to be grateful that they are on offer and can work so successfully like some of the other contributors have witnessed. I fully relate to the great sadness and worry with a family - some days that seems harder than others … Am trying to refocus on seeing the pleasure in small things like me son offering to wash the dishes instead of needing to be asked!!
Take care - cherish yourself
Fran
My suggestion would be to ask about Cyberknife as an option (i’ve had Cyberknife for bone mets). Cyberknife is so accurate that it can be used at a curative dose, and on difficult areas. Your Medical team could either refer you as an NHS patient to one of the private clinics (The Cyberknife Centre, or London Clinic), or to Mount Vernon NHS Hospital. The only problem is that your PCT would have to agree funding (and currently only 28 PCT’s fund Cyberknife - PM me, if you want a list).
Try to remain focused on getting the best treatment. I am in contact with a woman called Beverly who was diagnosed with metastatic Breast cancer in 1990 (21 years ago). At diagnosis, she had mets in the lungs, liver, spine, and bone marrow. She was treated curatively at the University of Texas MD Anderson Cancer Centre, with very aggressive chemo, supported by stem cell transplantation, and she’s here to tell the story.
So sorry you’ve had this awful news at what should be a happy time of year. I too have lung mets, which were diagnosed in June 2009 and, touch wood, I have no symptoms from them (wish I could say the same for my skin and bone mets!). Once you get over the shock of your diagnosis and get a plan of action I am sure you will begin to relax a bit more. There will be plenty of treatments to try in order to keep you well for potentially many years. I am 48 so I’m a similar age to you.
Thank you so much for all of your good wishes, I really appreciate the support. I am off to appointment at Clatterbridge Hospital in the morning so I should feel a whole lot better when I know what drugs I am going to have and whether the potential side affects will affect my work and routines.
When you get the details about the extent of your lung metastasis,let us know.You may be a candidate for surgery/radio frequency ablation, which has been shown to greatly increase survival.
Well I have been to see my Ocologist and I start back with Herceptin next Friday and also capecitabine, apparently I have got tumours in both lungs but no sign of anything in Liver or bones.
Now my man didn’t sound too optimistic because there were some small ‘flecks’ in my lungs Apri 2009 when I had my first scan and they were considered too small to be worried about, his pessimism comes form the fact that they didn’t disappear with the last chemo. It is 14 months since I finished my last chemo so they have had time to grow. What I am so glad about is that I actually asked for a scan because I wasn’t offered one and if this cancer is as aggressive as they say then … well too much to think about!
So ladies, I am still in shock is there anyone out there with extensive lung mets that has got any ideas of what I should do next I would love to hear from you.
I did mention cyberknife to my oncologist and he said that it is only useful for brain secs.
Please can someone explain what radio frequency ablation is?
Many thanks for all of your support and comments over the last week, you have really helped me.
Hi Sallyspoon5,
If your Oncologist told you Cyberknife is only used on Brain mets he/she doesn’t know what they are talking about. Cyberknife is used on all parts of the body (apart from the stomach). It is Gammaknife that is only used on the brain. Cyberknife is definitely used on lungs. Why not Google the Cyberknife Centre or The London Clinic, or Mount Vernon Cyberknife Centre and find out about what Cyberknife can do. Then either go back to your Oncologist and insist on a referral, or, if your Oncologist is as ignorant as this suggests, tell your GP you want a second opinion (if you like pm me and I’ll give you some suggestions).
Sally, I am so sorry you got such horrible news , and am sure you’re still trying to process it. It sounds like you have been diagnosed, as I was 4 years with small spots on the lungs- extensive but small volume. Since diagnosis I have been treated at Clatterbridge with a mixture of hormonal drugs and different chemotherapies, as well as herceptin. You do not say whether you are oestrogen positive. Through all these different treatments, i continue to have a good quality of life, look after my little boy, walk my dog every day, and am frittering away my illl health pension on lots of holidays! I know you are getting advice to look into cyberknife etc, but with respect, the people urging you to do this really don’t know your medical situation. You are quite entitled to ask for another oncology opinion, and most doctors are absolutely fine with this .
I hope you tolerate the herceptin and cabecitabin well: keep in touch, and feel free to pm me .
Nicky
I asked and got a referral to the Cyberknife Centre in London on April 2010 after I had finished my first chemo for secondaries but was turned down beacuse my mets were too widespread and too small. I took the view that as I had ‘significant reduction’ from my chemo I would feel happier if the remaining bits were zapped or removed, it seemed sensible to me. However, I was not deemed suitable for the treatment - I had been referred on the basis that I was going to pay for it myself as well!
My lungs look like the stars at night on my CT scans before chemo and then quite clear after, but alas thay have grown back and I am back on chemo again. I am on Capecitabine tablets and just coming to the end of my third cycle so will be finding out if they are working or not next week before I carry on with another 3 cycles. I also have Vinorelbine on day 1 and day 8. So far, the side effects haven’t been as bad as my last two chemos.