I certainly felt better when I had a treatment plan in place. I was diagnosed in March breast lymph nodes and bones all at the same time. No surgery.Zometa Anastrozole Ibrance and Calcium tablets. First scan was a few weeks ago results on August 6th (delay my fault as I’m away). Feel fine so far and breast pump seem to have all but disappeared. I know it’s hard to believe in those horrible early days but most of the time I accept the situation. I imagine we all have pit moments. I think it’s also important to like and trust your team. I love mine but I can really understand why you’d swap if you didn’t. It does seem that treatment varies. We’re all treated as individuals. Best wishes to everyone coping with all this. We’ve been in Devon for a week - baking hot! We’ve had a lovely time but we are a little worries about how our garden will be when we get home. We left it in the hands of our son!
Afternoon ladies.
My oncologist just rang with my biopsy results as they weren’t ready for my Friday appointment.
The receptors haven’t changed since my original diagnosis. So the liver bc is oestrogen positive, her negative. My oncologist said it was worth testing to see if the her had changed to positive. He said this would be the best outcome.
Now I’m absolutely devastated that I’m still her negative. I don’t know whether I’m just looking in the wrong places, but everyone past the 10 year mark seems to be her positive. I’ve totally wiped myself out. I’m having a proper wobble, I wasn’t expecting to react like this. ?
I started letrozole on Friday and he’s starting me on palbociclib on Monday instead of Friday as originally planned.
Ftf, sorry it wasn’t the news you wanted. Try to focus on the positive- you may be her-neg, but you are still er+, which from what I’ve read is probably the most important element in terms of possible treatments. Totally understand your wobble, I have them frequently and they come in every shape and size! Sending hugs and best wishes for when you start treatment.xx
Thanks for the support ladies.
Annie, it’s brilliant that your mets are shrinking.
I would love to have surgery at some point. My biggest lesion is just over 1cm. My oncologist said it was over 2 but the radiologist said no, much smaller. I have 7 or 8 in total. Most are that small they’re barely visible.
Oncologist wants me to try these meds before considering surgery. I noticed looking at my scan that there’s one lesion quite close to a portal vein. ? that’s giving me sleepless nights.
I think I just need to give my head a shake. I’m usually so positive. I’ve even cried on the phone to my Mam this afternoon and now I feel terribly guilty, she’ll be worried sick. ?
Ahh FF, you’ve got no idea how you’ve brought me to my senses. That’s exactly what I needed to hear. I thought you were her positive as well.
Thank you so much for letting me know. ?
I think my oncologist was referring to me being able to have herceptin if I’d been positive.
You’re obviously doing very well without it. Especially with your recent good news.
Thanks again FF. I might get my appetite back enough to have a late lunch now. ?
Thanks for the advice and tips FF.
I started running about 8 weeks ago so I’m hoping this helps. It’s an nhs thing called couch to 5k. I can manage about half an hour running every other day now. I started this before my secondary diagnosis just to get a bit fitter. Who’d of known how important it would turn out to be.
I’m feeling optimistic about the meds, improvements at 6 months would be wonderful. Maybe I’d be eligible for surgery then.
I think my emotional state might have something to do with the zoladex injections I’m on. I wonder if anyone else has experienced this?
I know I’m going through a difficult time but I’m genuinely not one for crying. Since I started the injections I seem to be on the verge of tears constantly.
Thank you for taking the time to explain HER2 for me Nicky. There’s so much to get my head around in a short space of time. My oncologist probably shouldn’t of suggested HER+ would be the best outcome.
Thank goodness for this forum. ? imagine the state I could of got myself into without you ladies. It’s slightly worrying that I need to come here for fact checking, but I’m extremely grateful that I can.
I think it’s absolutely disgusting that you can’t have access to these new drugs. Why won’t they allow you to have them? They worked for FF for 21 months. I can’t see how they can justify not allowing them.
I’ve had to battle for my disabled son for the past 27 years. I’ve got a feeling getting access to the treatments I might need over the coming years is also going to turn into a battle. At least I’ve got practice. I just hope I’m as good at fighting for myself as I am for him.
By the way no one has ever mentioned how strongly ER I am. Last week I requested my original pathology report from last year’s mastectomy and it seems I’m 7/8: 34 to 66%/ strong. Whatever that means.
I know the tamoxifen clearly wasn’t working. ?
FF, that’s a very shocking story. We’re brought up believing that doctors know best. Most of us just trust them, especially when we’re in a life or death situation.
I was very worried my periods didn’t stop until after chemo 5 and continued on tamoxifen. I was told not to worry. ?
And now I’m still worried. I’ve just had another heavy period. I’ve only had one zoladex injection, but it obviously hasn’t worked straight away.
Hello I’m new to this forum too. You have every right to be emotionally worried. It must be hell for you. Could you ask for more scans to put your mind at ease. I had mastectomy 9 years ago estrogen positive and had zoladex injections and tamoxafin. Recently been diagnosed with local reoccurrance I had a lump along scar.its still estrogen positive and ct scan clear. I’ve started taking anastrazole but I’m waiting for bone scan results I rang yesterday and nurse said the results are marked urgent to be looked at as they hav’nt been reported on yet. So I’ve gone into complete panic. I’m due to have lumpectomy and implant removed on 30th July but unsure of the plan depending on bone scan results. I’ve got to ring oncologist Secretary on Thursday. I’m usually really good at appointments and ask everything but I failed to ask would the operation still go ahead if the bone scan showed mets. I did ask nurse yesterday and she said she wasn’t sure about other options but you know that feeling when you think they are keeping things from you! or is it just me and my mind working overtime.
Hi JWD.
Sorry that you’re in the waiting game. It’s the worst of feelings isn’t it, and we over think every single thing anyone who works in a hospital says to us.
It’s impossible not to.
I’d think your scan has probably been marked as urgent just because of your recurrence. I don’t think they could be keeping anything from you if no one has even looked at it yet.
I know it’s much much easier said than done, but do try not to worry. I’d say they’re just being cautious giving you the bone scan. If your ct scan is clear I’d say it’s looking very positive for you. X
Thanks for all of this Nicky. I appreciate it so much. I’m building up a folder. My oncology appointments are very long. ?
I’ve sent emails off to a couple of renowned liver met specialists and have had replies stating that they agree with my current line of treatment.
Im very keen on the idea of surgery of some sort or radio ablation maybe. I’m terrified about this lesion that’s next to my portal vein. I’m obsessed with it. It’s tiny now but if this treatment doesn’t stop the growth it could end up being a huge danger to me I think.
Although my oncologist hasn’t mentioned anything about it.
How absolutely terrible that chemo gave you heart failure. I can’t imagine what you went through. You’re obviously made of tough stuff.
I’m confused about my pathology report too. That’s something else I need to clear up at my next appointment.
Angela xx
Thanks Feel the fear for your support and advice hopefully bone scan will be clear. I was on zoladex injections after my mastectomy and I could get quite weepy and very fatigued but you just put it down to everything you have been through.My emotions were all over the place at times with highs and lows.xx
Thanks silver lining will keep you posted.xx
Thanks for the info moijan.
I’m really fuming about this. I’m brand new to secondaries so I’m probably being naive, but is there nothing that can be done?
Has anyone ever started a petition? There seem to be petitions for everything now.
What about support from local MPs?
Surely this just can’t be right.
I had fec-t chemo last year and I’m eligible. It’s just ridiculous.
In my opinion, there is a lot of wasted money that should be redirected into healthcare.
I watched a prominent UK liver mets doctor on Twitter talking about some life saving/extending treatments that our government won’t pay for, so most of his patients are either wealthy or traveling from countries like Germany, where their governments are happy to pay.
He has to turn people from England away, even though he could help them. He works for the NHS but these treatments, such as SIRT and chemosaturation, he carries out privately.
If we can’t have the same standard of care as other places in Europe, then I believe the government has a responsibility to be honest and let people know that their lives are only worth a certain amount.
That if you want to be sure of receiving any treatment you might need, then you need to take out private insurance.
Because if their lives depend on being able to access life saving treatments on the NHS the answer could very likely be NO ?
I was definitely naive when it comes to this. I thought private healthcare was more about waiting times.
In hindsight, I obviously very much regret not taking any out.
Xx
Hi silverlining
Yes basically I had mastectomy 9 years ago. Grade 1 estrogen poss no lymph node involvement. I had 2 years zoladex and was on tamoxafin for 5 years.i had a saline expander implant fitted. At the beginning of this year I felt a hard lump almost like a piece of plastic along my mastectomy scar near to were I had breast dimpleing last time. I didn’t even panic as I thought I’ve had mastectomy.How naive was I? I’d got my routine appointment the next month so I thought I’ll mention it then. The breast nurse reassured me and said she thought my implant had ruptured.So then the scans started ultrasound which showed nothing then Mri which my onc confirmed rupture but was still unsure about lump I asked if she thought it was cancer she said she was unsure and it could be a crack in implant…Im convinced she knew there and then but didn’t want to worry me. She did a biopsy and I had results a week later which confirmed grade 1 and estrogen positive exactly the same as before. She did a blood test which confirmed post menopause so started me on Anastrazole. She requested ct and bone scan to rule out Mets. Ct was clear but I’m still waiting for bone results should no more on Thurs. I’m booked to have lumpectomy on 30th July and my implant exchanged then she said definitely radiotherapy but unsure about chemo about chemo. Xx
Thank you silver lining. It was a shock but I think it’s the not knowing that’s a killer and once it’s confirmed you get this inner strength… And yes its the scan-ixety which is the worst part. Thanks for kind thoughts.xxx what treatment are you having?? Hope it is going well…Take care xx
Silver lining you have done so well with treatment and surgery such a brave lady and so glad you have support from Macmillan…My onc said I fell in the small % bracket with it coming back because it was low grade first time and caught very early. I’ve only got to ring my oncologist Secretary on Thursday she will tell me if bone scan has been looked at. The worry will be if I have to go to Friday’s surgery to discuss results because with ct results she told me over phone that they were clear. I had my pre op test on Monday and I’m booked to have lumpectomy on 30th July so it just depends on results. I never asked my onc what the plan b was if bone scan showed Mets. It could be that I still have op. My husband and family are very support. My husband is very understanding as he had oesophageal cancer last year and had surgery to remove 2 parts oesophagas and 2 parts stomach plus chemo before and after. We keep each other going and have a good sense of humour which helps? this forum is really good because like you say knowledge is good and you realise your not on your own. I will let you how I get on. Stay strong silverlining and thanks.xx
Morning ladies.
Zana, sorry you’re joining us. I’ve only been here a month myself so understand what you’re going through. Having only one bone met has to be a good thing. I mean I’m sure you’d rather have none, but one is the next best outcome.
If your ct scan didn’t show any spread elsewhere then there probably isn’t any I’d think.
My liver mets showed up very clearly on the ct with contrast and they’re tiny.
People live for a very very long time with bone mets.
Hopefully one of these clinical trials will zap the one you’ve got and get you into NED very soon.
They say these new immunotherapy drugs should be available more widely in around five years time. There are clinical trials taking place in America as we speak.
Silver, talking about statistics. Last night I read ‘the median isn’t the message’ by Stephen jay Gould. Interesting stuff.
Just reminded me why I should feel very positive about my future. After feeling like I was slipping into a bit of a hole (thanks to the meds) this has really picked me back up and set me back on the right track for me. It’s worth a read I think. Xx