I wasn’t entirely sure which section of the ‘secondary breast cancer’ forum to post on. If I’ve got it wrong please let me know.
I was diagnosed with BC on 27 Jan - since then I have had a CT scan and today was informed that I have small nodes in both lungs.
This means that the mx which had been scheduled for 13 Feb has been cancelled. The aim now is to get me on chemo asap to start fighting the cancer generally. If all goes according to plan the mastectomy will follow the chemo then I will have radiotherapy. I am looking at 18 weeks of chemo (once every three weeks). I will probably have to wait 3-4 weeks for the chemo to start as have to see oncologist first.
On the ‘plus’ side I asked the consultant if they were looking at controlling the secondrary (lung) cancer or curing it. She said hopefully curing (I wasn’t entirely sure if this was being said to hunour me). She also said that they will be keeping an eye on my breast to make sure that it doesn’t become more urgent to do the mastectomy than to proceed with the chemo.
On the ‘hey ho’ side I asked for a prognosis and was told they couldn’t say and to ask the oncologist when I see him in a week or two
As you can imagine this all very much new terrority for me so any input appreciated.
Sorry to hear about your dx but at least you have a plan and it sounds very positive, my own dx was very much like yourself primary and secondaries to both lungs dx last feb, I did chemo first to reduce the primary and treat the lung mets the primary was largish lump at 6cm and was reduced to 2mil using the FEC/Taxotere chemo’s the mets to my lungs are multiple and are now tiny and stable as of the last ct scan in Oct 2011, after the success of the chemo I had a mx back in September and have just finished radiotherapy now I am permanently on herceptin or at least whilst it still works and tamoxifen, they don’t seem that anxious and treat me very matter of fact on the subject of lung mets, I have not been told any prognosis/timeline but at my oncologist meeting on monday he did mention that I should be as comfortable as possible for the next 10 -20 years of my life, I took this as a huge positive, this he mentioned whilst we were discussing the horrendous hot flushes that chemo/tamoxifen have put me into early menopause, we may of found a way of treating this hideous side effect.
Getting back to your dx it really does sound very positive and whilst I appreciate how scary it is too find you have mets on your lungs you can live with this very well for a great many year. The chemo’s really pack a punch with those lung mets and if they are tiny in the beginning they could disappear altogether so take heart all is not lost. If you want to pm me (private message me) please do I will try and help wherever possible.
Evening Historygirl , I hope that sherry is going down well. I am so glad you had such a superb reply from Sarah. Chemo is yuck but it is very expensive and they wouldn’t use it if they didn’t think it would do any good. It was rotten news to get but at least they now know what is going on and can give you the appropriate drugs. You could always keep chasing re the oncology appointment.
I hope you will get other positive postings. There are lots out there if you search the Forums but I doubt if you want to do that just yet.
Big, big Hug,
Cackles
As DJ says, ‘rhubarb’ and even b****r (cos nice ministers don’t know any swear words!!) That sucks, and I’m sorry. But… you will get great treatment at your hospital and fabulous support on here from the secondaries girls (and the rest of us).
Hi Historygirl, like you I was Dx last Feb with primary and multiple Lung mets, I was devastated at the time, but once treatment started, 6Tax/Carboplatin/herceptin chemo followed by MX and then 15 Rads,I felt more positive. After chemo finished I had CT scan which showed multiple mets (I had lots !) had been reduced to 1, that is so small its not measurable. My Onc told me on my last visit in Jan I am as good as NED, I am having Herceptin for as long as it keeps working and Letrozole, so all in all things are ok at the moment.
Sorry to ramble on but I needed positive stories when I was first DX so wanted to let you know there is light at the end of the tunnel, I am back at work now, part time but life is getting back to normal.
If there’s anything you need to ask please PM me.
Jean x
Thank you so much for your positive and supportive messages. I am on a cloud of fluffy niceness thanks to you lot. And no, I haven’t been drinking. Yet.
Sarah your message was fantastic - it really cheered me up. I told my family about it too and it cheered them up as well. Thanks.
Laurie - same as my comment to Sarah re upliftingness (is that a word?) of your your email and the same for Jean’s message. It’s nice to know that there is hope and all is not darkness and gloom with added wailing and gnashing of teeth.
DJ007, Cackles and RevCat - Thanks so much for your support. It really means a lot. Although, Revcat, I have to say you coming out with ‘rhubarb’ makes you a very naughty minister indeed. I have had to lie down to recover from the shock of you knowing let alone typing such a word! What is the world coming to?
Just been to GP to get flu jab as a precaution during chemo fun to come.
Do you mind if I come back on to rant? After a relatively calm few days I’m back in full quivering jelly mode - and the two diazepam I’ve taken seem to be doing not a jot.
Yesterday I got my oncologist appt through (for this Thursday) and also spoke to the BCN (a different one as my ‘frosty’ one is on hol). I was pleased to get the appt and the BCN was reassuring on a number of issues. So that was all good.
Then out of the blue last night I started getting gyne problems. I am really hoping that they’re nothing to worry about and are just a part of the being-50-and-probably-approaching-menopause blips that some people seem to suffer from but cannot help but be convinced that it’s a sign of something much more sinister. I’ve emailed the BCN overnight (so she’ll be coming in to work to another one of my epics) and also made a GP appt for today (a belt and braces approach).
Just feeling very sorry for myself at the moment (and frightened). It all seems one step forward, twenty steps back.
Just when you’ve got a big guy to sit on the case and you’ve managed to zip it all back in and you’re heaving it into the cupboard under the stairs, - the zip comes away from the seams, it all falls out and… Oooh that sounds familiar
I had quite a few gynae bits and pieces between 47-49 (50 now). Light bleeding, heavy bleeding, pain, no bleeding - all was OK but put it down to the whole menopausal business.
Hope it’s nothing and good that you’re on the case right away to get checked out.
Meanwhile, hope you have found another strong case and are firmly shoving all the stuff back in.
(If it’s any consolation, my husband has just given me a Valentines card which is particularly poignant, given my diagnosis, so now I’m typing and blubbing and stuffing it all back in with ya’!)
You never cease to amaze me. With all your own grot going on you still manage to be a calming influence. Thank you - as always - for your response.
I’m trying to safety-pin together the broken zip of the case and also tie it up with string before hopefully booting the bl**dy thing back under the stairs. I hope you’re managing to do the same.
My husband is not one for valentine’s cards so I was spared any extra emotion there - other than giving him a clip round the ear 'ole for failing to deliver (although to be fair he does a good line in home made christmas cards. Last year’s featured an off-cut of carpet,some milk bottle tops and fairy lights, don’t ask!)
Just thought I’d check in and add any support you may need, i’ll be there cherring on the sidelines.
Your team seem to have a good plan worked out for you, which is a comfort as I had to wait an awful long time before they actually got me in the breast cancer returning stack…
Just trust in them for the time being and if you feel in any way that things aren’t right you have us all to moan to and a few that would have had the same experience and can at least empathise.
Wishing you a good day, hope you can put the gyne problem on the back shelf…
Clare what a pain. The gynae bits would have shown up on your CT if there was a big problem , (I would have thought.) At about your age I flooded for Britain at each period. There was no cause found it was just ’ one of those things’ so a quick laprascopic hysterectomy and all was well.
Off to get my bone scan results now . Hi ho and on we go !!
Take care, I hope today is ok. I will be thinking of you on Thursday.
Cackles
I saw (lovely) locum GP today who is convinced that my gyne problem is simply all part of being 50 rather than anything sinister that needs investigating. So I’m just middle-aged and bonkers - that’s fine by me.
So now it’s the wait for the oncologist appt on Thursday. Hey ho.
It’s me whinging again. I KNOW I wanted my appt with the oncologist to come about asap and I KNOW I was worried that I woudn’t get an appt this week because of it being half term. But now it’s the day of the appt (9am this morning) I am sick with fear.
I’m imagining all sorts including the onc having a big fat file on his desk which he slams shut after glaring at me and declares in a loud echoy voice ‘Nothing we can do, go forth and meet thy doom’. Then there will probably be a clap of thunder or two and some scary organ music.
I am driving myself bonkers (in case you hadn’t guessed). Oh well, in a few hours I should have a better idea of what to expect (that’s if it’s not all claps of thunder and scary organ music).
Sorry about utter self-indulgence of the above, just need to vent to people who understand.
Historygirl. You are NOT whining. I so feel for you today. It is like the initial wait for diagnosis. The rotten thoughts that whirl around. They will be throwing chemo and perhaps hormones if you are ER pos. they might suggest starting on the Hormones having the op then chemo. Or chemo first. This is all guesswork but SOON you will know. Bless you my Bone scan was fine. Today I will ask for further investigations re my groin discomfort. I am seeing the surgeon this morning. I was a Clinical Nurse Specialist in that team for twenty years so I can bully them!!!
Every best wish for today. The treatment does work so hold on in there.
}}}}}}#HUG{{{{{{{{{
Cackles
Back from the onc and having crumpets and tea (once the sick feeling wore off I was ravenous!)
The oncologist was lovely (even though he was about 7 years old) and Frosty Nurse is on holiday so I got Nice Nurse - a double bonus.
The plan is for me to start chemo (sometime within the next 2 weeks, date to be set). I will have 3 lots of EC (once every three weeks)then a CT scan to see if it’s having any effect with more chemo to follow (then maybe mx and radiotherapy).
I saw my CT scans and my lungs look like a starry sky (a description I’ve nicked from someone else on these boards)with lots of little white blobs everywhere. However the onc said that the mets shouldn’t (at this stage) be causing any symptoms (echoing what Nice Nurse told me by phone on Monday) so the breathlessness looks like anxiety (in that case note to self: drink more sherry).
I gritted my teeth and asked about my prognosis. The onc said he couldn’t say as it all depends how I respond to treatment but he said he was “fairly optimistic”. He was at pains to point out that the best I can hope for is control and that this is not curable. I already knew that in my heart of hearts (from the info here and elsewhere).
I’ve got heaps of reading matter to get through and a wig voucher - the world is my oyster!
Thanks Cackles and Laurie. What would I do without you. Laurie - I totally forgot to ask them to turn the music down, but I’ve got a broom here, would you like me to bang on the ceiling?
D x
PS. Forgot to say that during my talk with the onc my husband had a coughing fit. He got heaps of concern from the onc and nurse. What a drama queen!
