Hi Sally,
I was diagnosed with widespread lung mets in December 2007 and commenced chemotherapy on the 18th December so I can relate to you you receiving such horrible news at Christmas time. It was my worst nightmare come true at first when diagnosed with secondaries but and its an important ‘but’ there is always hope. I was given a prognosis of ‘a couple of years’ from the onc. I had 6 cycles of EC chemo and it failed miserably, tumour areas growing by 10%. I was then prescribed Letrozole during a break from chemo and was due to commence Taxotere three months later. My children were 10 and 6 at the time.
I was referred to a good naturopathic doctor and during the time that I was prescribed the Letrozole and my next scheduled CT scan I began a regime of immune boosting supplements. Then, to everybody’s surprise, onc included, the CT scan showed ‘no evidence of measurable disease’ and I was described as in remission. My onc has told me to carry on doing what I’m doing because (although this is not verbatim) ‘you don’t know and we now don’t know how you have achieved remission but it is my guess that the supplements are enhancing the action of the letrozole’. That is rather a big statement from the mouth of an onc!!!
Anyway, as others have pointed out there are so many treatment options out there, things are constantly improving in the breast cancer world. If you would like to have more info on the supplements that I take then send me a message and I can give you the details. The only thing we know for sure about this disease is that everybody’s response to it is different! So with that in mind, and I’m not preaching but coming from the angle of having been newly diagnosed with secondaries and not given alot of hope, there is always hope!
All ready for Chemo and Herceptin tomorrow, now all that I need is a pill for my hypochondria! I was completely a-symptomatic at diagnoses last week but now I have developed everything possible from the top of my head to the tips of my toes!
Hi,
Diagnosed with BC in may 07 had a mastectomy, chemo,rads and zolodex and arimadex, all going really well and looking forward. Around christmas time I had a pain in my back initially I thought I had pulled a muscle things didnt really bother me as I had only had a chest x ray and bone scan just before christmas and both came back clear.
I was told yesterday that i have a 1.5cm nodule on my right lung and fluid on my left, I had complained two weeks ago that my breathing was really bad. My onc has said that I need more chemo, that I can handle, what I cant handle is what he said next- if the chemo doesnt work them I have no more than 12 months, if it does work then I have 4/5 years left, I dont know how to cope with this news. Im 42 with a 5 year old beutifull little girl I cant bear to think about the future as at this moment there isnt one.
So sorry to hear your latest diagnosis Jill. If you need a good listening ear then the helpline staff are here for you. Lines open at 9am today (9-5 Mon-Fri & 9-2 Sat). Calls to the helpline are free, 0808 800 6000. They’re here to support you through this.
Jill - i’m so sad for you, words won’t do it. I hope lots of ladies with inspiring stories come along and help give you some hope. I want you to know i’m sending you lots of love and good thoughts at this very fearful time. lots of love and hugs
I am sorry to hear your news. I was diagnosed with mets in my liver and spine when I was 42 in 2008. The diagnosis is a dreadful shock. I remember feeling numb, followed by fear and then sadness. To date, touch wood, I have remained well. I still work full time and don’t have any symptoms at present.
There are lots of women on this site who have had secondaries for a good number of years and are living full and active lives. Check out some of the other threads that relate to secondaries. It sounds like you have a hormone receptive cancer. Women who have this type of cancer have better outcomes as there are a lot of drug treatments available and if one does not work they usually switch to another one.
I don’t think it is helpful when oncs give a prognosis in terms of years as the tests are not accurate enough to predict this at the moment.
You may want to ask for a second opinion.
My liver met disappeared after chemo.
I does take a bit of time to get your head round things. Sites like this are helpful. There are also support groups.
Thank you and also lynn for the support, we have over the last couple of days been doing some reaserch into what and how we go about tackling this now. chemo starts next week, not bothered about that at all, its the prognosis that is the problem and if only I could see past what the oncologists said. I find it hard to understand as I eat the right things and am a gym junkie. Done everything possible but I know its a disrespectful disease.
I was eastrogen receptor positive and on zolodex and arimadex. Which they have now stopped. We have looked in to the cyberknife and we are pushing for that as radiotherapy was never mentioned at all.They are assuming that it is a cancerous nodule on my right lung and they dont know what the fluid is on my left only that the fluid is clear fluid.
I have to stay positive for my little girl and state of mind.Just wish I could stop thinking about what the onc said.
Despite only just having received this shocking news you seem to be taking control of the situation. Chemo does not bother me that much either. The cyberknife is definately an option worth exploring. I think Lemongrove got her cyber knife paid for by a charity. If she has not done so already I am sure she would be willing to give you some advice re funding if your trust refuse to pay. I am sure that I read somewhere, probably on this site, that if you have a single lung met, the prognosis can be quite good if its treated aggressively.
I too was diagnosed with lung mets just four weeks ago and had a bit of a row with my oncologist because he came across as very negative too. I gave him a right old flea in his ear, I told him that I would live as long as I bl**dy well could and for his information I could only live one day at a time anyway!
I am back at the hospital today for herceptin and to get more capecitabine. My first round has been trouble free, no sickness, hands and feet still okay and the added bonus of sleeping better.
We really can only live one day at a time so make today a really special one for you and your little girl
I have been to see a lung specialist yesterday about the fluid on my left lung and vented my splean as to how angree and annoyed we are with the old goat-oncologist- (this is not to be mistaken for denial of any sort)who should be put on a course in compassion and understanding, I am well aware of their position but I hope to god his daughter/wife never recieves the kind of news in the manner that he dilivered it.
I have refused to see him again, we have now been allocated a new oncologist who we see on monday morning. I have today been accepted to be on a new trial for the fluid on my left lung that is a insitue drain, they emptied just under 3 litres of fluid today and the drain has been inserted and we can empty this at home, this is instead of pleurodese and meant to be the “gold standard”-my husband gets taught by the makers on how to fit the drains and empty it next week.
Also the lung specialist said that the nodule on my right lung was less dense than the week before!!!
We have also looked into cyberknife, hell or high water I will be having it. We are no longer going to be told the bog standard crap that can come out of the their mouths and be treated like a number.
I am determined to beat this and the bloody system that dictates our treatment,who,when,where and what. I am standing on my two feet and by god I am going to use them.
Sorry that I sound quite mad but I have had enough, like you said Sally we can only live one day at a time- but I have plans. I hope that your treatment goes well and sickness free and good for you for telling him, more of us should.
Don’t be sorry Jill - your response to that fool was magnificent! In my steep learning curve about seondaries over the past year or so I have learnt that the only realistic response to the “how long?” question is, “How long is a piece of string?” No one knows - it’s that simple. And anyone who pretends they do should really learn which of their orifices is the one they should use for talking!
Brilliant post Jill! And all the best for your treatment to kick those secondaries hard in exactly the same place the “old goat” should be kicked!
I have total respect for your attitude. There is nothing wrong with determination or hope. Denial can be a good thing as it gives us time to muster our resources.
I am being treated at CanTreat in Runcorn, Halton Hospital isa satelite hospital of Clatterbridge, I don’t think that I am allowed to mention any names on here. I just call him Professor
I had my second lot of Herceptin and I have started my second cycle of Xeloda, and I am really worried… because I feel so amazingly well. Keep thinking, “this can’t last”
I didn’t realise that I was poorly until I started feeling better. I have got full movement in my arm again, the first time for more than a year.
I am praying so hard that things stay this way. Everything is just a bit scary now, I am going to have another x-ray in three weeks and I am hoping that it shows that things are under control and that the disease hasn’t progressed. Anything better than that would be miracle status!
Just wanted to share feeling well (I am not normally as miserable as I have been for the last three weeks, honest!), I hope that you are all coping too.