Hi this is the first time I’ve written on a forum but I hope someone may be able to throw me some advice/support.
i got the call to go for my fIrst mammogram on 14 April. Because the age range had been brought down from 50 to 47 I got included. I am 48. I got recalled two weeks later and had further mammogram and two biopsies. A week later got told I had invasive lobular breast cancer in two places. Further biopsy and pet ct scan and another week later got devastating news of stage 4 spread to lymph nodes and spine. Had bone scan and today got told I have extensive bone mets. In absolute shock. Oncologist started me last week on ibandronic acid, zoladex injection and tomorrow I start tamoxifen.
Oncologist seems so unfazed and as I am hormone receptor positive thinks the hormone route is the way to go. No chemo yet but may happen further down the line.
i have two young daughters and a fantastic husband but to get all this news in the space of a month is playing complete havoc with my mind. Oncologist says we’re not talking months but years but seems very vague about it all.
can anyone share any thoughts as to whether they’ve had hormone therapy for this type of cancer.
thank you
debbie
Hi
Sorry you have to find yourself in this place and to have received the ‘double whammy’ of a primary and secondary diagnosis at the same time. It takes long enough to adjust to a primary diagnosis let alone a secondary so be kind to yourself and give yourself time to adjust. All of us on here will know how you feel and that’s why this is such a great forum where you can get support, advice and just have a rant about things - we will all understand! Now you have a treatment plan in place you may feel better but you are questioning why it’s hormone therapy rather than chemotherapy. I would imagine the pathology of the biopsies will have told your oncologist that your type of BC is very hormone positive. There is a count of 8 for both oestrogen and progesterone so it’s possible you are 8/8 for both. This would mean your BC should respond very well to hormone treament and I’m also assuming it is a low grade BC ie it is slow growing rather than aggressive. These are questions you can ask when you are at another appointment, if you feel you want to. BC can respond very well to hormone treatment, mine has done on a number of occasions although I have also had chemotherapy at times. Your onc will no doubt be saving the big guns until they might be needed. There is a lady on here who has had hormone therapy ever since her diagnosis, in fact there’s a couple I think so this isn’t unusual. If you check out the Bone Mets Please Join In thread in the Living with SBC part of the forum you will find where most of us ‘hang out’! Also a lot of us read that thread so if you add any questions to it you may get more answers. I hope this helps but please come back for anything however big or small it may seem - one of us is bound to help!
Nicky x
ps the forum is playing up at the moment and none of us can correct what we’ve written whilst using a tablet device so apologies for any typos - it’s not normally as bad as this!
Daisyjane.
Back in 2004 I was supposed to have my 1st mammograme at 50 but they didn’t actually call me until I was 51 …dx with primary which was in lymph glands. Often wandered if it was picked up a year before at age 50 landmark whether it would have been less advanced. But I had rads.chemo and five years hormone treatment and wasent dx with bone Mets to Oct 2015 so i had 11 years healthy and virtually forgot about it all in that time. Even when I got hip pain …didn’t link it to bc after so long …just put it down to old age!!
Xxx
I have been on this site since October and there are more younger
ladies here than I ever thought. But like you say . .unless they actually find a lump and get it checked …could be a sitting on a timebomb until the call up at 47 for the mammogram.
It would also b nice to see more research to find out WHY so many ladies are getting bc and what is the cause.
xx
i debbie - coming to your thread a couple of days late but wanted to say welcome. How I wish the internet & forums had been around when I was first diagnosed in 1990 but through years of frequent episodes of recurrences and new primaries I felt very much on my own. You have done the best thing coming here and talking to others who will understand what you are going through and in time you will be helping others to come to terms with what they are going through :). I didn’t have to cope with the double whammy that you have had to cope with as my secondary diagnosis came 12 years on from my first primary and it was then that I was dx with extensive bone mets - they seem to have gone everywhere without my being aware until I got severe sciatica. I hope that you will find some encouragement when I tell you that I have been living with the bone mets for 14 years now. My cancer has never been hormonal so the range of treatment available for er+/pr+ has not been any use to me but after my 2ndary dx they discovered I was her2 pos so I was able to have herceptin along with zometa - another one of the bone drugs.
Grrr… I started this reply very late last night and am trying to finish it this morning but am running into problems getting it to post on the forum so I will stop at this point before I lose it all. (remembering to copy and paste before I hit the post button again!)
Dawn
xx
I think we ought to get tee shirts printed with:
LETS DO A DAWN
You are such an inspiration to have lived with bc for 26 years.
Xxxx
Hi Debbie
I realise I’m very late to this thread, but I’ve only recently looked at forums and how glad I am that I did. I am in your exact situation, maybe a week or two behind you. I’m 50 and cannot get my head around being in this situation. It’s over-whelming, frightening, lonely and almost too much to comprehend - as you said, shocking. Finding this site has been like a lifeline. I was started on Tamoxifen immediately, have had my first Zometa infusion and am about to have my first Zoladex injection next week.
I was told by my oncologist that chemo was not suitable, as lobular cancer is not very responsive to it, and hence better to treat with hormone treatment, and when dealing with secondary cancer they use best option first ie, hormone treatment. My oncologist told me yesterday that many people live for years and years with this condition when it is managed correctly.
I hope you are doing ok, and managing to get your head around things - I’m trying to practice living in the moment (mindfulness), and trying to re-normalise my life. I’m not there by any stretch, but I’m trying to be kind to myself, give myself time to adjust and taking all the support I can that’s on offer.
Take care of yourself.
Louise xx
Hi Louise,
You are right some secondary ladies(and men) can live for many years. Nonetheless, a secondary diagnosis is a huge thing to get your head round, but it can be done. I’m a year on from diagnosis. I try my best to live in the present and by and large I manage it (except when I’m waiting on my scan results!) I enjoy all the little things. I’ve got into TV box sets and series, films and books ( see our book club). I spend as much time with my family as I can. When you have our illness it puts a lot of things into perspective. I don’t worry about most things now. I’d say most days I can put my illness out of my head and enjoy life. My biggest tip would be to get your pain under control. It’s hard to put the illness out of your head when you have pain as a constant reminder of it. Take whatever painkillers you need. All the best. Keep in touch.xxx
Hi all, just caught up with tis thread and have gone up and down tin the space of a few comments.
we all seem to be similar ages…i was 47 at primary and 50 at secondary.
I was uplifted to read Dawns post abot surviving for many many years but then got very despondent when i read Louboo’s comment about her oncologist saying chemo is no good for lobular cancer. My secondary skin mets mutated from er+ to er- so hormone therapies are no good, i’m her2- so herceptin etc no good…i only have chemo to rely on but no one has ever said to me that lobular cancer was iiresponsive to it. I am now on my 5th chemo so perhaps there is some trth to it?? i know my choices are limited and there aren;t many options left to go on but i’m even more scared now. Has anyone else ever been told this? x
Hi everyone
I haven’t been online for a couple of weeks as I think I’ve been trying very hard to put this wretched condition on the back burner and not let it impinge on my life too much. Easier said than done I know but I can try. I too was very uplifted reading these messages but again was a bit perturbed on hearing that lobular cancer may not be responsive to chemo. I have been on tamoxifen for six weeks now and had my second Zoladex implant a couple of weeks ago. I am also on the Ibandronic acid. There is just no way of knowing whether or not these drugs are doing their stuff. I have had a few side effects appearing - night sweats, headaches, neck and shoulder ache but on the whole I think I am doing OK. Oh forgot to say the tiredness. Some days fine, other days absolutely worn out. I go back to see my oncologist in August and have to have a CT scan a few days before. Just know I’m going to be a bag of nerves that week but guess we have to go back and find out how things are doing. Keep dreaming that I will walk in and they say we got it all wrong and got your notes mixed up with someone else and there’s nothing wrong with you. Wouldn’t that be good? I know it’s wishful thinking. Sorry am rambling on. Sending positive vibes and love out to everyone. Debbie xx