I hope your appt went as well as these things can. I remember when I was told of my secondaries (to the bone), I was on my way to the Dr’s for painkillers for what i thought was a sports injury. By the time i finished the phone call with my consultant, i had arrived at my dr.s - i recall just standing in front of the receptionist and not being able to speak, the receptionist kept asking me my name and i simply couldn’t answer. Shock like this does many different things to us over a period of time, so don’t be hard on yourself, we all react differently, none better or worse just different.
There are lots of treatments about these days, so your prognosis may not be as grim as you fear. It’s about 2 1/2 years since my diagnosis, i am now on maintenance herceptin and pamidronate, I hope to live a great deal longer especially as currently there is no evidence of disease.
I’m so sorry to hear of your diagnosis. It must be so heart breaking to have gone through the assault course of surgery and chemo and then find yourself here. It is no surprise you are devastated. It feels so isolating to receive this kind of diagnosis at our age and I totally identify with feeling like a freak - I almost didn’t want to speak to anyone cos of it. I was dx March 08 with liver and lung mets from the off before any invasive cancer had been found and I confess I just wanted to be teleported away - don’t know where - but just away from the nightmare. I had to scrounge some valium for a couple of days to deal with the shock (under-rated, I might add).
However, as others have mentioned, once I had a treatment plan in place and all the necessary tests were done, I was chomping at the bit to get to the hospital for my first chemo - who’d have thought it? My liver tumours have shrunk from 7cm to a modest 1.2cm, and the lungs to 1cm - at the moment I have been declared stable. I wouldn’t have thought so this time last year and, as you have seen from the responses so far, there are quite a few of us still kicking around in spite of our diagnoses!
I hope you had a productive meeting with your onc and wish you the very best of luck with your chemo.
xxx
Hello Doylej, I was also sorry to hear of your diagnosis. I was daignosed primary and secondaries (liver and highly suspicious area on my spine) within a week in March of this year so I really don’t know how it is for you having fought once and have the prospect of another fight. I remember being so down at the beginning that I couldn’t even face looking at this website. I had never been so low in my life and I found it quite scary. I also have children age 6 and 10 and there is always the fear that they will forget you. That’s why we are doing so much to ensure good memories during the times that we can. Also though I find that as a family we need the routine of ‘normality’ and keeping up the children’s after school activities has been a priority. It is true what others have said in that once you start a treatment plan you feel that things are more under control. None of us know what the future holds, all we can do is fight as hard as we can to find out! My husband and children are the reason I am determined to live as long as I can. I want to see the adults that my children will become. I want to be a grumpy old woman! This is still very much early days for you as it is for me. Please take heart that there are so many lovely ladies on these forums. Reading some threads certainly bring me up when I am feeling down. Take care of yourself. Snoogle x
I can really feel for you.
Ive recently joined the club of secondaries (bone) and am now on Xeloda to hopefully stabalise any spread. Its such a shock to be diagnosed again, mine was two years after the primary diagnosis, and I have hardly been able to speak about it. All it was was a really painful shoulder that painkillers didnt help. My GP was treating it as inflamed tendons in my arm as it is the opposite side to the mastectomy and I use my left arm more now.
Reading posts from others has been a great help. Its just knowing others are out there and surviving that gives me hope.
so sorry
please just take one day at a time and focus on the positives i know it’s easier said than done, but you will find that inner strength from somewhere for your little family. god bless and thinking of you
Hi Doylej,
So sorry to hear your news. I remember that awful feeling of just not knowing how I was going to cope when I was diagnosed with secondaries in lungs and lymphatic system in Feb 08 and even worse when my husband suddenly left less than 3 months later.
Just wanted to give you some hope that things really do get better and although still always scary time and treatment plans do somehow ease that complete fear at the beginning. I had 22 taxol with Avastin last year and each scan was progressively better and have had no evidence of active disease since last November so after a horrendous year (found the divorce harder to cope with than the cancer!)I am off chemo and starting to have more energy and finding myself a new life. I don’t have children and used to think what was the point as well but my dog has kept me going and now I’m enjoying finding myself again.
The initial shock is awful but you start to realise that there are many people living with this and making the most of their lives. I feel actually better physically than I have for a long time and like you was so worried with it being in both of my lungs but here I am playing badminton regularly and just joined a ladies only gym!!
Best of luck with it all and let us know how you are doing. You’ll find great support on this site.
Be kind to yourself and let yourself have time to take it all in.
Anne
I can only thank you all again for your wonderful replies - what a fabulous bunch of inspirational women you are. I am trying to come to terms with things, but it is so, so hard. I saw my Onc last Monday and he is putting me on a course of Xeloda - he said it has less side effects and is easier because it comes in tablet form and you can take it home which should mean a better quality of life. I guess I can only hope that I respond well to the treatment. A friend of mine mentioned some new radiotherapy called cyber knife which can be used on secondary cancers - I mentioned this to my BC and she said she wasn’t sure if it would be an option. I guess money comes into it, but how do you say that someone’s life isn’t worth the extra cost. Has anyone had the new cyber knife treatment? If so, it would be really good to hear from you and how they decided you were a good candidate for this new technology. Lots of love to you all.
Hi doylej
At least you have a plan now which I hope helps in terms of the panic you have been feeling. There are lots of ladies on here taking Xeloda and I hear it is very effective for soft tissue mets. It may be worth starting a new thread about it if you need more info and also one about the cyber knife treatment. I have heard of gamma knife (if I remember right) and that has been mentioned on here a few times. Good luck and hope the chemo is good for your mets and also doesn’t give you too many side effects so you can get on with things.
Nicky x
Hi doylej,
I have also been diagnosed with lung mets and possible liver mets
after finishing my treatment for primary b.c. in November so I know exactly what you are going through.
I have just finished my second cycle of Xeloda. So far I have had absolutely no side effects at all, and the lump under my arm (which triggered investigation) has disappeared so I am praying that its working! I also feel amazingly well, I have played 18 holes of golf four days this week and I havent told anyone about my dx so everything seeems “normal” We are also going to Portugal in a weeks time as you can travel when taking Xeloda
Top tips from the ladies on here…I cream my hands and feet every day, I slap aqueous cream on in the morning and a lovely cream recommended by Ripley called Udderley cream at night( I mananaged to get it at a local sports shop but you can get it on line) I also take Vitamin B6 I take 20mg a day some ladies take higher doses but my onc said 20mgs max.