Diagnosed with lung secondaries on Christmas Eve

[Guest user]

Hi Ladies (And Wayne)

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.

SallySpoons5

[Guest user]

Hi Yellow

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

Please feel free to private message me

SallySpoons5

[yellow]

Hi Sallyspoons

Can I ask if you are being treated at clatterbridge and who is your onc?

cheers

[Guest user]

Hi Jill and Sallyspoons,

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.

Alex D

[Guest user]

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!

[Guest user]

Thanks sally,

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.

Take care

Love Jill xx

[Guest user]

Hi Jill

My thoughts are with you.

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

Love and Hugs,

SallySpoons5

[Guest user]

Hi Jill,

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.

Alex

xx

[Guest user]

Hi Alex,

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.

jillx

[Guest user]

Hi Jill

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.

Wishing you the best possible treatment outcomes.

Alex.

[Guest user]

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

Lynn

[Jo_BCC]

Hi Jill,

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.

Take care,
Jo, Facilitator

[Guest user]

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.

jill

[Guest user]

Hi Ladies,

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!

Let the battle commence!

[Guest user]

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!

[Guest user]

Hi Sally

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.

Good luck for next Friday, Sue x

[Guest user]

Thank you, feeling much brighter today.
So much more hope now I can see that there are other things out there.

Hugs to all xxxxx

[xwelcomex]

http://www.rfablation.co.uk xxx

[Guest user]

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

[Guest user]

Sally I sent you a message

Here is some info on RFA for lungs

http://ww5.komen.org/ExternalNewsArticle.aspx?newsID=42403&id=6442451804

[Lemongrove]

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).

[Guest user]

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.

[Guest user]

Sally

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.

[juliet66]

Keep in touch Sally. My treatment is via Clatterbridge too.

Julie x

[Guest user]

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.

I am busy compiling a list of questions for him!

Thanks to all x

[Guest user]

Hi Sallyspoon

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.

Linda

[juliet66]

bumping this up

[juliet66]

Do not hesitate to ring the BCC helplines Sally. I rang them and they were excellent.

Try not to get bewlidered by all the treatment regimes until you have more information and can get your head round a few things.

Best Wishes,

Julie

[Lemongrove]

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.

[Guest user]

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

[Guest user]

HI Sally

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.

Thinking of you at this difficult time.

Sue x

[Sam_BCC]

Hi sallyspoons5

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:-

http://www.breastcancercare.org.uk/healthcare-professionals/publications/quick-order-list/*/changeTe...

http://www.breastcancercare.org.uk/healthcare-professionals/publications/quick-order-list/*/changeTe...

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.

I hope this is helpful.

Best wishes Sam, BCC Facilitator

[juliet66]

Sally,

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

[Ruby1]

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

[Guest user]

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!

best wishes