Nicky and Millie, congrats on your Stable Mabels, that’s great news!
Angela, it’s horrible, but it’s still good that you can be treated with hormone drugs like letrozole, it means there are a lot of options. Hang on in there, I know you’re a fighter. Big hugs.xx
Oh Bon
I remember that cream tea really well …the cream was still frozen , the scones so hard that any cricket players would have welcomed them instead of a ball and the jam pips …I was picking out my teeth for days ! But hey hoo it was a nice catch up and we could put the world to rights about our ailments.
Hope fran and I can join you soon again for a better cream tea !
???
Thanks for the advice everyone. Nicky, it’s so great to hear you were able to be operated on and her2 neg. A top liver surgeon from the Christie’s told me this would be highly unusual. However, I’ve spoken to someone who was recommended by a lady on this site who I went through chemo with and he says it wouldn’t be a problem.
My oncologist says given where my lesions are (7 of them) surgery in the future could be an option. ?
Most of them are very small, but there is a whopper of 2cm. ?
It’s crazy that one of yours turned out to be triple neg. what a sneaky little **** this disease is.
Tatyana, I wish neither of us had to be here, but I can’t lie, its good to hear from someone I feel like I’ve been through so much with. Xxx
Angela, so glad that you now have some hope of surgery. What a great thing this website is for spreading the word! Have you got a definite treatment plan yet for the drugs, or are you waiting for any more tests?
I had one of those days yesterday that we all know about. All geared up for day 1 if my second cycle of gemcarbo. Turned up at 9.45 for a 10.00 appointment. Previous day’s blood results had gone missing (second time in a row for me, it’s because they"rationalised" by merging lab services with another trust). Long wait for a nurse to be free to take a second sample. Then 1 and 3/4 hours for that to come back. It turned up at 2.15. By which time I was pretty tired of hanging around in a hot stuffy ward or taking a long hike down corridors to a hot stuffy cafe. Still, the results are back, three cheers…oh no. My neuts are borderline. They had to call the oncologist. Who said, if it was the day 8 treatment (gemcitabine only) he’d say go ahead, but as it was Day 1 (the works) he had to say no. Go home, come back next week.
I know a lot of my buddies on here know exactly how that feels! What makes it worse is we’d just booked a week in the Lake District for my next “good” week, which won’t be my good week after all, so we had to cancel! This morning I found my lovely hubby in tears because he’d been awake half the night desperately trying to think of ways to make life better for me. Bless him!
Grrr. Oh well, England are about to play a big match, so that’ll cheer us up… won’t it?
Ahhh tatyana.
I know how you must feel finding your husband in a state. My heart breaks for mine. I know how strong he’s trying to be, but then I find him just staring into space. His dad died when he was 6 with pancreatic cancer so he’s really already had more of his share of this crap.
How rubbish that your nuets have let you down. And yes, hanging around on wards doing nothing just adds to the misery.
We don’t want to spend anymore time in hospitals than we need to.
I had to spend over an hour on the chemo ward yesterday just to have a zoladex injection. It wasn’t the best of days having to go back there so soon anyway. ?
I start letrozole in two weeks, then Palbociclib two weeks after that. Along with the monthly zoladex injection. Periods are really heavy so trying to shut my ovaries down.
My oncologist requested my biopsy last Monday and I’ve just had a letter today to say the pre op isn’t even until July 17 with no date for the actual biopsy yet. We’re due to take our grandson away on August 4 so it better be before then. He’s looking forward to it so much and so am I. He’s the tonic I need.
At least this good weather is set to continue so when you do make it to the lakes the sun should be shining for you.
I just got the choice hotels special offers for Keswick through the letterbox this morning.
Very tempting. ?
Well, at least we won the football. Miracles do happen. ? xxx
Xxx
Angela, I had two years of zoladex back in the day, instant menopause, with all that that entails! But I honestly didn’t find it too bad, and the big bonus was no more periods-- mine had also been very heavy, painful, and every three weeks, so I was well pleased to see the end of that!
I do hope you get the biopsy done in time so you’re ok for your holiday. Aren’t grandchildren the thing to Brighten up your life!
Grandchildren… and England winning at football!!!
Instant menopause sounds fantastic. Whatever the side effects, I’ll handle them. My oestrogen is trying to finish me off, so the quicker it works the better.
Yes, grandchildren and football. I’ll raise a glass to that. ?
I was perimenopausal at the time of my first diagnosis, in 2002. I started with zoladex for two years and tamoxifen for about 5 years, by which time I was post menopause good and proper. So they switched me to letrozole, which is better than tamoxifen if you are post menopause.
My second diagnosis, last year, was triple negative, in which case hormone treatments don’t apply and your menopausal status is irrelevant!
I am surprised to hear an oncologist saying he’s only heard of one person living ten years. My oncologist won’t promise anything but she does stress that each case is different and she treats everyone as an individual. She won’t promise ten years but won’t rule it out. My understanding is that there are a lot of new treatments and we should keep hopeful. However, I’ve only been on this journey for four months so other ladies will know much more. I wonder if anyone else finds the comment surprising? Everyone’s case is different x
That’s interesting Nicky. I’ll certainly be asking my oncologist about ovary ablation.
I think I’m where I am now thanks to tamoxifen not working. My periods didn’t even stop until my 5th chemo and then started back up again a couple of months later. I told my oncologist at the time that this worried me, but he said it didn’t make a difference.
As for the longest anyone living with mets being 10 years, we know that’s not the case. And as others have said, there are so many new treatments now, who knows how long any of us will live. Only time will tell.
For me, I think believing in a positive outcome for myself will add to my good health and see me through even longer.
And there’s a race on to develop even more of these targeted therapies/ immunotherapies, so as far as treatments for secondaries is concerned, I would say that these are exciting times.
Hi Silverlining,
I probably didn’t make it very clear, but actually it just isn’t very clear!! After my initial lumpectomy, axillary clearance and rads in 2002, I was symptom-free for 15 years, with a total of 10 years hormone treatments as a precaution. During this time I had no scans except for mammograms, which I had no faith in as they never showed my primary tumour even when I told them where it was!
So as far as anyone knew I had no nodes and no secondaries.
When I presented in 2017 with new symptoms in the same breast, the docs couldn’t decide whether it was a new primary or a recurrence or a secondary. My original primary was ER+, the new one was triple negative. But apparently it’s not unknown for them to change their characteristics. I guess we’ll never know; in any case it didn’t affect the treatment plan.
So I had fec-t and mastectomy, and it was my first post-surgery scan that revealed secondaries. And here I am!
It just showed how much they still have to learn about this wretched disease!
Just to add a little to the ten year comment - the nurses at the hospital I go to and the MacMillan nurses have told me about many ladies with secondaries who have lived with secondaries for more than ten years and are still well. Obviously that’s not everyone’s story but the nurses don’t make things up. It’s best to be realistic but live in hope (I think!)
Hi everybody,
I am a bit puzzled by how long secondaries have been present as they must have been there before they are found. My primary breast cancer was in 1995 and I had a lumpectomy, “mild” chemotherapy |(including Methotrexate) in tablet form, radiotherapy and then five years of Tamoxifen. I had a bone scan which was OK. I didn’t have any CT scans - I don’t know if they did them then. Then 15 years after stopping Tamoxifen and being discharged and 20 years after my primary (I don’t know what kind of breast cancer it was, I wasn’t told, but it must have been hormone related) I was taken ill and it was found that I had secondary breast cancer in my peritoneum and I had to have an ileostomy. I had FEC chemotherapy and then Anastrozole, which I still take more than three years later. Whilst having the FEC a scan revealed that I had multiple bony metastasis that had presumably been there for some time, so I was put on Denosumab injections. So, I don’t know how long I’ve had secondaries. Obviously the little b’s were circulating in my blood stream, but does this count as secondaries? I have no soft tissue involvement. I’m not sure if it is still in my peritoneum and it isn’t mentioned on scan reports. Apparently peritoneal mets are quite hard to see on CT scans. So, it is over 23 years since my initial diagnosis and over 3 years since I found out I have secondaries. Since then I have been told my disease is “stable”, so people can live for a considerable time with secondaries. When I first found out about my bony metastasis I mentioned a friend who had lived about two years after secondaries were found and the nurse said, “Oh yes, two to three years is the average time for people with secondaries.” After coming on this forum I realise that I am by no means unusual to be living with cancer, so long after original diagnosis.
Windflower
Windflower, what an amazing story! Maybe you’ve already been living with secondaries for 23 years (and counting!), you just didn’t know. Keep it up, it’s so encouraging!
It’s interesting to hear how different people’s experiences are when it comes to scans. I’ve only had CT scans, never an MRI or a bone scan, so I can’t possibly know if I have bone Mets. Some people seem to be given every scan in the book as soon as they are diagnosed, others get the bare minimum. I wonder, is it money, or medical differences of opinion?
Come on England …make us proud and get to the final …
I can’t bear to watch. .so having my sneaky gin and tonic in the garden!
I’ve had a gin and ginger beer, but it hasn’t given me the courage to watch anymore either Carolyn. ?
I’ve only had ct scans tatyana. My oncologist says looking at the cts he doesn’t believe there’s cancer anywhere else.
To be honest, I’m still digesting this bad news so don’t think I’d cope every well with anymore at the minute so I’m happy to believe him.
If two years is the usual for mets, I wonder if that means I can cash in my life insurance in 12 months time. ?
If I’ve only got 12 months left they pay out early. That could buy me a lot of radical treatments.
Always have to look on the bright side. ?
<Empty imported post>
I watched it on the big screen at the village hall, great atmosphere, all the kids in the village were there. There’s going to be some bleary eyes at school this morning! Quite glad it didn’t go to penalties in the end, none of us could have stood that!
I have never asked my onc for a prediction as to how long I’ve got, I know they can’t really tell at this stage and it’s only statistics. My friend who has pancreatic cancer says her statistics are 8% survival, but she says somebody has to be in the 8% so why not her? Love it!
I try to live for today. I don’t always succeed, but mostly I just get on with my life!
Love and hugs to everyone. ??
Silver…most of us have learned not to look at stats…how can they possibly help you? They won’t give any reassurance Posting them will possibly depress other people who would rather not know too.
bc is not 1 disease, but maybe hundreds. So they can’t compare like with like at all. And we don’t know what they ARE comparing…so they are complete ba*lls, sorry.xx
Moijan?
Windflower here again,
I hope I haven’t worried anybody by repeating what the nurse said about length of time people live with secondaries. I think she shouldn’t have said that and in any case, the statistics she was quoting must have been out of date. People live much longer with secondaries now and I certainly wouldn’t ask anyone how long I’ve got. We just have to carry on as normal, once the shock has worn off.
I’m not a football fan, but still watched the match and was hoping England would win. It’s a shame they got so near to it. We’ve been switching between tennis and football recently and I now know more about the scoring systems they use. (Have never been able to hit a ball with a raquet(?), myself!)