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newly diagnosed stage 4
Mon, 30/01/2012 - 17:57
#1
Hi,
Just been diagnosed today with secondaries ( breast lymph nodes,liver & spine)after almost reaching 4years all clear. I'm obviously feeling like absolute crap but have my oncology appointment tomorrow where I'll be told my treatment plan and wondered if any of you could give me a heads up on what I should or shouldn't be asking. I'm all over the place emotionally but the pills the Dr gave me are working a bit. I haven't got a clue what to ask or anything tomorrow so any help would be appreciated.
Cheers
xxx
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You will feel a lot better when you have your treatment plan. A lot of us bony ladies are on zolodronic acid, more commonly known as Zometa. Given as iv and doesn't take long to have. It's not a chemo. I have had no SEs to note except on my first infusion when it made my legs ache for a few hours. I suppose he will put you on some kind of chemo. You don't mention whether you are estrogen positive. He may go down the hormone route. There are loads to try.
X Sarah
Hi I Was dx in march last yr with lung mets also node inv in chest area it's a awfull shock when y dx but once u have y treatment plan it helps a bit I've been up and down all yr so I know how hard it can be I'm on xeloda but am tn so chemo is my only option gd luck and let us know how u are Laura
Hi BFM
Sorry you find yourself here but welcome. I know it feels like the world has just collapsed but you will find a way of coping and I promise you, it will get easier.
As cromercrab suggested, you will probably have a drug called Zometa which is given IV every 4 weeks. It belongs to a group of drugs called Bisphosphonates and they are given to help stop the cancer cells from infiltrating into the bone. You can read a bit about them here:
http://www.breastcancercare.org.uk/breast-cancer-information/treating-breast-cancer/secondary-breast-cancer/bones
The infusion only takes 15 minutes or so and is usually pretty well tolerated with few side effects.
Things to ask:
Hormone status. Are your ER/PR + or - If you are positive, then there is the option of anti-hormonals such as Tamoxifen or aromatase inhibitors such as Femera
What is your HER2 status? If your are HER2 +ve then Herceptin will be an option
Your onc should discuss options with you re: hormones Vs chemo to start with. I was given chemo first because of the spread to my liver but depending on the amount and size, you may be offered hormonals first. Whatever the decision, you should ask your onc why s/he has decided to do one rather than the other, so you are clear.
If your onc talks about chemo, you should ask which one and how many cycles along with side effects. Then you can come back here and tell us all and we'll give you some top tips about how to get through it and what to expect.
You may be offered radiotherapy to treat the lymph nodes further down the line and you might want to ask about this.
You should also ask about how you will be monitored and how often e.g. CT / MRI scans; ultrasound scans etc
Do they offer support from a breast care nurse?
Is there psychological support available (e.g. psychologist). I saw one a couple of times and it was really helpful.
Some people want to have an indication about the likely progression of the disease (the "How long have I got" question) and this is obviously a matter of personal preference. I chose not to ask because reading through the stories of other women in a similar position, it quickly became apparent that SBC is a very individual disease and I don't think there is an onc in the world who could give you a definitive answer.
There are women living well with SBC for many years. Give yourself a chance to come to terms with it and take it one day at a time. You'll have good days and bad days; days when you think "what's the point" and then others when you think, "I'm feeling really well".
Don't Google stuff to do with SBC. Stick to sites such as this and MacMillan cancer support.
If you're having trouble sleeping, you might want to ask your GP for some sleeping tablets to get you through the next few weeks.
Are you going on your own tomorrow or do you have someone you can take along for support? Come back for a rant / advice / support. There are lots of us in the same boat with lots of experience of coping which we can share with you.
Hang on in there.
Laurie x
Hi,
Sorry to hear your news.
I don't think I can add much to Laurie's comprehensive post.
Just let you know that I have secondaries in all those areas you mentioned (liver currently stable and undetectable). Have had secondaries for about 2.5 years now and is on my 3rd chemo. (more details on my profile).
You might not want to know everything at all once. But make sure you write down everything you want to ask your oncologist and then write down the answers at the appointment. My mind always goes blank on the day and then forget what he said when I get home!
We are all here for each other.
Let us know how you get on. We'll all be thinking of you tomorrow.
Take care & take it easy. M xxxx
Wow, thank you ladies for all the info, that's a big help. I'm going with OH tomorrow, he remembers everything for me.....like a living memo pad!
Seems so much to take in and find out but again thanks for explaining as I feel just a tad lost. Over the years you somewhat forget the terms and lingo so getting my head around that again on top of everything else.
As I said before, thanks again ladies for all the information, it really is appreciated.
I'll definitely post more when I know more tomorrow
Thanks for your good wishes
TTFN
xxxxx
Hi BigFatMumma
I am sorry to read about your secondary diagnosis and wanted to remind you that our helpliners are here to offer you further support on 0808 800 6000, weekdays 9-5 and Sat 9-2
You may find the following link useful as it will take you to the BCC web page about secondary information, support and services from BCC;
http://www.breastcancercare.org.uk/secondaries
Take care
Lucy
Hi BFM
Just seen this posting and sorry to hear that your worry that you have secondaries has happened
As the other ladies have said we are a supportive lot and will be able to help you along the way. I hope your appointment today goes well, you find out your treatment plan and you can gradually come to terms with this diagnosis as we all have done over time. We do all understand what a horrible time you're going through, I said at the time it felt like being hit with a sledge hammer, so do come back for advice, support, to moan, to rant or do whatever you need to that you can't do with friends and family.
Nicky xx
Hello again,
Well oncology was a bit of a downer. Although she's a lovely lady she's not exactly optimistic with some of the things or is it more a case that I'm over sensitive, dunno.
Anyhow, she's explained that because the 4cm cancer on my liver was the main concern, they want or advise me to have 6 lots of Tax, then if that goes to plan some hormone injection followed by pills. Not sure if I can get through 6 Tax as when I had 3 after the Fec four years ago, it played havoc with my bowels and I was more or less housebound. They said they'll scan me half way through to check it's working.
To be honest it's left me on a real downer. OH and I feel like crap and I'm upset most of the time. I didn't expect to come out skipping and singing zippiddydoodah but didn't feel we'd feel so very sad.
I really appreciate all the comments and help you've given so far ladies. Need a nap I think as I feel exhausted.
Much love, take care
Dee
xxxx
Hi Dee
Did your onc give your the 'Stage IV stare' then? I had that from my first onc - doom, gloom and not a lot of hope. I ended up switching to another onc because I thought, if you can't give me hope then I'll go and see someone who can. (There were other issues but it's a long story!)
It's not about being unrealistic - my prognosis hasn't changed and I know it will get me in the end but I think it's so important to have hope and to know that there are many treatment options.
Sounds like TAX will be tough given your last experience. Was the problem with your bowel the main SE'? You need to talk to the onc and see about getting something to help you manage this.
No wonder you are so tired - all that emotion really takes it out of you. Hope you can get some rest.
Take care
Laurie x
Sorry to hear and understand how you feel could you tell me the name of the pills the dr gave you please.
AmandaJayne,
If you're feeling really anxious, a small dose of lorazepam (a bit like valium) could help. If you need help sleeping, you could talk to your doctor about some short term Zopiclone, 3.75mg which is a sleeping tablet. It helps you get off to sleep and doesn't make you feel too hung over in the morning.
Laurie
Thank you for the info just wanted to see what the Docs use in the UK
i have been given zanax and valium plus already been taking zopiclone 7,5 for 5 years was told to take zanax during day and if needed val in the eve, my first zanax i used today after i called one of the mcmillan nurses and she seemed very negative with me and told me to call BCC on this site so shall do that tomorrow.
Have my 2nd onc on 8th of feb so will prob be taking a few more pills
along the way.
Take care x
Hi BFM,
I'm really sorry you came away from your onc appt on a real downer. It's amazing how much difference an onc can make to your experience - some can lift your spirits and give you hope and others - well they leave you feeling as you did.
I am wondering why they are using tax again as you have already had it before. Do other reading this find it odd? Maybe BFM this is something you can ask the helpline here.
It is always such terrible shock when first dx with 2ndaries but I found once treatment started and checks showed it was working I started to feel more hopeful and adjusted to living with it the best I could. My first dx was in 1990 and 2ndaries in 2002 and I hope to have a good few more years yet. I hope you will too.
Dawn
xx
Hi bfm I'm also surprised they are using tax again maybe because u had a long break i was told I'm not allowed fec tax again but then I was only clear a yr after prim im wondering if you can ask if there is something else you can try explain your concerns with se after all you have gtg out and enjoy life but also there are lots of tabs they can use to help se i know how it feels seeing a onc you go in positive and come out on a downer why do they do that to us I changed hos long story but am pleased I did more treatment options than my local hos i have got stronger over the months and now talk to them about my scans treatment etc don't let them talk you into something you don't want most of the time there is a alternative gd kp posting great help these girls x
Just want to make two points:
(1) The point made by Dawn and Laura, about finding a positive Oncologist is crucial, because their attitude will underpin the treatment they provide/you receive. If they have a defeatist attitude, go elsewhere, because that attitude will be reflected in the treatment they offer.
(2) No doubt you probably want to get treatment going as soon as possible (and that's natural), but don't let that sense of urgency, lead you to agree to treatment you are not entirely happy with. Oncologists vary quite a bit in their approach to treating secondary cancer, and there are many treatments available, so use the first meeting to ask about all the treatment options, not just the one your Oncologist prefers, and why he/she is recommending a particular treatment. This information will allow you to make a more informed decision, and will give you a clue about your Oncologists approach/attitude. If you decide you would like to try an option they have mentioned but do not recommend, ask if they would be prepared to provide that instead - or if not, refer you to an Oncologist who would.
It's confusing
There are two different chemo drugs that people often refer to as "Tax".
Taxotere = docetaxel. This is often used as part of the primary treatment regime, given 3-weekly.
Taxol = paclitaxel. Weekly taxol (usually 1 week off in 4) is the gold standard for secondaries, so my onc told me.
Hope this helps.
Hello,
Nicky thanks for always popping by, it's good to hear from you and Laurie well you are full of information and help which is fab at this somewhat confusing time, thank you for sharing that with me. You asked about my SE on Tax (docetaxel), well the bowel problems weren't the only ones, stomach cramps, bone pain and losing nails and feeling very unwell where they kept saying borderline transfusions were part of them as well. Sounds straightforward enough written down but it was quite a nightmare going through it.
Amandajayne, the pills are called FLUANXOL 1mg. My BCN spoke to my GP and he said they would work instantly where as a lot of meds take a week or two to kick in. They're not a sleeping pill (although less anxious means more relaxed to sleep)and I can drive fine whilst on them, they're an anti-anxiety pill and they really have helped. Don't get me wrong I'm still crying and feel helpless but I'm not in that hysterical-panic-terror-type feeling I was at the start. He was prepared to give me the Zoplicone but said they're addictive so I'm holding off those for a while. Hope that info helps.
Laura & Dawn (lovely photo btw), Yep I thought it was weird but oncol said that as it had been so long since I was last on it (2008) and they were most concerned at the 4cm cancer on my liver so that was her 'in my opinion the best thing would be...'
OH rang my 14yr olds school today and explained to the Head, she was great and very understanding but OH did it because I'd get so upset but I still got upset discussing it afterwards, useless moo aren't I! It's although saying it out loud reinstalls the fear and the situation a bit more, does this ever get easier to say?
Thinking of you all and sending hugs and love your way
Dee
xxx
Hi Dee
I think we were all in the same state as you are when we were 1st diagnosed with secondaries, so don't apologise or think its unusual. Believe me it's the norm! It does, over time get easier to speak about but also takes a while to take it all in. I resorted to emailing all my friends to let them know and said I would get in touch with them when I felt I coud handle it. Also that I really didn't want to 'chat' about my dx, who does? Especially when theres a lot of misguided and I'll informed opinions out there
Take one day at a time and don't beat yourself up about things, you've got enough to deal with as it is.
I can't help on the chemo side as I've only had chemo (FEC) for my secondaries but I hope you can discuss things with your onc so you know why you are having a particular chemo and you are 'happy' with the decision ( a term used very loosely I can assure you )
Nicky xx
Hi Dee, so sorry to read your latest news but we do understand what a terrible shock a secondaries diagnosis is, will take a while for things to settle down - I still have good days and bad. Re your doom n gloom oncologist - I had one of those, she eventually picked up my secondaries (extensive throughout spine, ribs & pelvis) said she was very sorry, offered me a Biphosphonate and nothing else, said chemo wouldn't be effective, I felt my time was up. BUT, spurred on by the ladies on this site I found the strength to go for a second opinion (Royal Marsden, even though I'm miles away) got some hope from them, then changed oncologists at my local hospital. I'm now on oral chemo (Capecitabine and Vinoralbine)and tumour markers already reducing after 2 cycles. Have very little pain, fingers crossed. Please, if you are not happy with your oncologist then ask your GP to refer you for second opinion. I feel my situation would be far worse if I had gone along with my depressing first oncologist (not in the East Midlands are you???). All the best with your treatment and keep in touch x
Hey Happyfeet
I'm in the East Midlands - maybe it's something in the water that breeds gloom and doom oncs!
Laurie x
hi all, sept 2010 was dx with bc novem 2010 secs in bone, liver, lungs, and lymph gland round chest, 6 cycles of FEC i have zometa monthly, after the chemo liver lungs were clear, over the last few weeks ive been breathless and feel ive no energy, i went GP and he said deff somet on bottom of right lung wich he would treat as a lung infection 1 week of Amoxicillin, i have almost reached the end of the course of tablets and feel no different.....so now im convinced the cancer is back in my lungs, i just wanted to ask you ladies did you have anysymptoms before the DX of lung mets, thank you avril
Hi Avril,
Prior to my stage IV diagnosis after a routine screening, I had absolutely no symptoms (liver, lung, bone). Only symptoms I have ever had have been the SE's from the damn chemo!
Hope it's nothing - just a stubborn chest infection.
Laurie x
Hi everyone,
I've not posted on here before as I haven't had anything really to contribute but I have found all of you on this forum to be my lifeline since I was dx with secondaries to my lungs in Oct 2011!I was completely shattered at first but after listening to you all I now have some hope for a future. Thank you!!
I had a small lump on the reconstructed breast and my surgeon was immediately concerned and sent me for bone scan and ct scan. I was found to have multiple mets on both lungs and changed from letrozole to Tamoxifen. When I saw the onc I was told that they were very small; the largest 5mm.In Jan 2012 I was re scanned and went back to see the onc last week.The onc read out the scan result which said "no evidence of any new disease.Good! Then said that the largest was STILL 2.3cm.! I mentioned that this was an increase as the largest had been 5mm. We then both looked at both scan reports and the first one did not mention anything bigger that 5mm. Because the scans themselves were not available to look at I have to go back next week.
I had the scans at different hospitals and I dont know if one is at fault for not noticing or if the disease has progressed.
The day of my first scan I had had the bone scan a few hours earlier so I wonder if this made the ct scan less accurate?
When I was there last week I was going to ask about some discomfort I have been getting in my neck for the past few weeks but because of the other things I forgot. I will ask next week but I wondered if anyone else had had similar symptoms.
Thanks again to all of you.
Hi Zola
Good to hear that you've found all our ramblings helpful!
Can't think of any reason why the bone scan should have affected the results of the CT. It may be that the scan has been wrongly reported or wrongly read and it would be good for your onc to get a copy of the original scan (most places can do it by electronic transfer).
With regard to the discomfort in your neck, I would definitely mention it. I have vague aches and pains in different places at different times. Currently I've got twitch in my right eye and I swing from thinking it's either stress or brain mets - unfortunately these thoughts go with the territory
Good that there is no evidence of any new mets and hopefully the Tamoxifen will do it's job and shrink the bigger one - whatever size it is.
Laurie x
Thanks Laurie. Will definately ask about neck next week. Hope everything is okay with you.
My computer is plYing up today so am typing this on my phone. Can't see the print that well so if there are spelling mistakes.......take care Sheila x
Hi Laurie,
Just to say thanks again for the advice. I was struggling typing on the phone. The keys are too small. I am on line on my computer again now although it keeps playing up. Fingers crossed! Anyway I hope what you are feeling in your eye is nothing and I'm sure it isnt but I know what you mean. Every new twinge or pain is a worry. Do people settle down I wonder and become more calm. I rang the breast care nurse yesterday to ask about my neck but it was an answer machine so I changed my mind. May as well wait until next Thursday when I see the onc. No one else has said anything about this symptom so maybe it's got nothing to do with the cancer. Take care, Sheila x
well GP sent me for chest xray today thinks might be fluid on my lung but to my suprise the blood test came back saying probs with my liver, i have a routine appt with my oncol 23rd of feb but gp wanted it brought forward but my oncol dr is on holiday nxt week.....so its the waiting game again...just thought i would let you ladies know, good luck to you ladies xx
Hi Zola, laurie, anvil,
I have SBC with multiple mets to both lungs, get a bit out of breath sometimes but not sure if this is to do with anxiety or the mets, my onc seems to show no worry about these lung mets and reassures me that I am doing fine.
Zola - I also get a nervy type of pain in the neck it comes and goes sometimes I think if I concentrate on it that it seems to become worse!!!! If I am engrossed in something and sort of forget about it it seems to disappear, quite bizarre!!
Anvil - I did'nt have any symptoms and was dx from the start with primary IDC in right breast and secondaries to both lungs they told me there were multiple or lots of mets on both lungs, after chemo, surgery and now just finished rads, the mets on my lungs are the same as the ct scan last june no change they are now tiny and unchanged or stable thank god. Rads can cause breathless type symptoms and also herceptin if your on that can make you a bit breathless.
Laurie - Just wanted to say hi and thank you for your comments you always give me a positive vibe something I am truly grateful for, hope you are responding well to the treatments.
Love and light to all
sarahlouise xx
Avril
I work with liver results all the time and there are lots of reasons why your liver function tests (LFT's) could be elevated. Sometimes as a response to chemo or other drugs (mine were abnormal during chemo) or sometimes, folk just run high for no apparent reason.
My GP called me in to talk about my low Hb which had gone from 13 to 10 but forgot that I'd had chemo which explained it! It's good that s/he is on the ball and keeping an eye on things but that does cause anxiety.
Sorry you're waiting and hoping it's nothing.
Laurie x
Hi sarahlouise,
Thats exactly what it feels like. "nervy"! Sometimes a bit "tingly" but like you it seems to go at times. I will query it next Thursday and let you know what the onc says.
Just had an energetic morning. Took my dogs for an hour on the moors which was hard because of the snow and ice and have just been swimming with my friend so feel pretty good at the moment. Got to go shopping now. Hope the day doesn't go down hill! Always end it though with a couple of glasses of red wine which is nice and relaxing.
Take care , Sheila x