Really really scared now!

Just back from app and really need a bit of support!

I knew this was going to be bad news before I went, but it still came as a shock. My hands are shacking while typing this. So bear with me if it doesn’t make too much sense.

Was dx prim + bone mets in June, 09. Didn’t have mx. Had chemo for 6 months and tamoxifen for just over 3 months. Also on Zometa. But over the last week, the lump seems to have got bigger. And top of that, my period has returned today! (It was stopped after the 2nd month of chemo). My onc examined me at the app and I could sense the disappointment. He also said that tamoxifen didn’t hold up the BC as well as he thought.

CT + MRI scan will be organized next week to see whether there are further progression, starting Zoladex straight way. Will also switch from tamoxifen to arimidex if I can cope with the side effects of zoladex. He was trying to assure me that it will be OK, but I’m struggling to hold myself together. Too scared to tell my parents the details. (only told them about the scans)

I wasn’t feeling great this morning, now I feel terrible and scared. And he also mentioned if those all fail, I have to go back on chemo! This is really bad timing, only just discussed with my employer about 2 weeks ago about returning to work!

Really worried about the scans, hope no more bad news.

Thanks for reading & supporting xx

m1yu i really hope these changes are just ‘tweaks’ to your treatment. Sometimes not all chemos work for us - and the fact you still have your lump has made it easier and quicker to spot this. I can understand why you feel all over the place just now. You had got to a place where you were coping and then WHAM something comes along and all our worst fears rise up again. Give it time and I think you will find you are coping with what is happening a lot better. Meanwhile the wait for the scans and then again the wait for the results is just so tough. I will be thinking of you and keep everything crossed for you that they find nothing else.

Dawn
xx

Hi I’m really sorry to hear you’re having a crap time. Don’t get too down. Some chemo works better than others, I know it’s crap the idea of having more chemo but it’s hard I know but you mustn’t give up. I know it’s frightening but wait and see what the scan shows.

I could meet up with you this Friday if you’re free and you want to.

Keep your chin up. CU soon. xxx

Hi m1yu,

Just sending you kind thoughts. I hope they manage to get things sorted for you as best and as soon as possible and that you have good news with the scans.

Take care,
Love Esme x

Hi there

I understand how frightening this all seems. It reminds me of my own medical history. I was diagnosed with bc and liver mets in July 2005, did EC chemo for about six months and then on to tamoxifen. I was sure it would work for me. Unfortunately a CT after six months showed progression so it was back to chemo, taxol, for me. After that, we tried Femara, but after only a matter of weeks, it was obviously not working so I began xeloda which worked well for two years. I have had other chemos and tried a hormonal drug again since then. I always assumed that the hormonals would work as I am heavily ER+ but this is not always the case. I have been well during most of the past five years and I am just trying to say that, while it is very scary when something fails in this way, there really is plenty more options to try.

Do take care, and good luck with the scan.

Jenny x

Hi m1yu

I’m really sorry you’ve had crap news - but please, please don’t start panicking too much just yet. I had a similar experience with Tamoxifen, the only difference was I tried it before chemo and it didn’t work, so then I had the EC chemo. I am also 95% ER positive so just assumed I’d have a good result with it but it wasn’t the case and my markers took a huge leap whilst I was taking it.

The chemo DID work well for me and I was put onto Zoladex and Arimidex - yes, the side effects are pretty horrible but I can put up with any amount of hot flushes and aching joints if it means keeping things at bay. Touch wood, this combination seems to be working well for me, at my last check-up my CA15.3 markers were down to 25 from 140, so within normal levels.

I really just want to say that just because Tamoxifen doesn’t seem to be working brilliantly for you, that is not to say that an AI won’t work. As my onc keeps telling me, I’ve only really started scratching the surface of treatments and there are loads more out there to try.

I’m looking forward to meeting you if you are still up for the Bristol meet and not working that day.

Take care
Lesley xxx

Hi m1yu… agree with all the replies you’ve received so far…tamoxifen didn’t kick in for me until at least 3 months, it then worked well but my next hormonal, Arimidex, was MILES better. I’m much older than you and have had periods return sporadically whilst on chemo. They only stopped while I was on Tamoxifen 'cos I had monthly injections to halt them. (Expect one more period just after your first Zoldex.)
I do hope those powerful little pills (they look quite small after Tamoxifen) work well for you too…x.x.x

Hi m1yu
I just wanted to say try not to worry too much. I was dx with secondaries at 1st dx started off with FEc and then on to Tamoxifen but that didn’t work so I was put on ~Armidex another hormonal with Zoladex injections. That held cancer at bay for a year. I then had Taxotere (didn’t work that well) But now on xeloda and that seems to be working. So there are lots of different options. The side effects are not too bad from Zoladex apart from hot and cold flushes.

You just have to keep trying what they offer you there will bound to be something that will work for you
love Caroline

Hi m1yu

Sorry to hear you news and that you are having such a shit time just now. I am hormone negative so no hormone treatment for me but I had a negative response to my first chemo after bone secs and regional recurrances diagnosed, like you lumps got bigger. My next chemo which I have just finished did the trick and one tumour disappeared the other vastly reduced. Sometimes it just takes time for the right one to be found.

Sending big hugs and good luck for your scans. Hope the next combination of treatment does the trick for you.

Lots of love Anne xx

Hi ladies,

Thanks soooo much for your posts. A little encouraged to know some of you have been through similar scares and come out of the other end with good results.

Geared myself up for some bad news this morning, but it’s still hard to heard it from my onc. Just as I’m feeling more confident and good enough to go back to work, it feels like a slap in the face. Also a bit spooked by the urgency of the scans & changes to treatment plans because my onc is usually very laid back. I suppose it’s always good to get it sorted out asap.

seaofserenity - I’m free this Friday unless I get a phone call asking me to go in for scans, will PM to arrange meet up & by text.

LesleyLP - I’m not working that day, so hope to make the next meet up. But hopefully getting the scan results on Wed that week. So have to see how it goes. (funny that I’ve got the app for scan results before the actual scans are confirmed) It might be one of those last minute notice from me.

Will update you all on the scan dates and results.

Take care xxx

Hi M1yu,
So sorry to hear you’ve had bad news today.I hope the scans bring good news but although of course it’s scary it does sound like your onc. is being pro-active and good to decide to change tack if a current regime isn’t working as well as hoped.As the others have said there are still many options out there and different things work for different people. I was on tamoxifen for 2 years but then had a recurrence 2 years after coming off it. I’ve now been having zoladex and arimidex for 18 months and keeping stable at the mo and the side effects have calmed down a lot. I haven’t actually had many of the hot flushes and sweats at all and didn’t on tamoxifen either. The joint pains were bad in the beginning but at the mo generally only first thing in the morning until I get going.
You are bound to be scared but try and be kind to yourself and just take each day as it comes and it certainly seems as if your oncologist is looking out for you.Best of luck with the scans and hope to see you again soon.
Take care,

Anne xx

Can’t help but sending an encouraging hug(((x)))

Hi ladies,

I’m so glad the weekend is over!

Got a phone call today from the hospital asking me to go in for the 2 scans next Tue (6th April) at 12.30pm. That’s just over a week to wait. Honestly, I’ve never been so pleased to receive a phone call from the hospital!

Was worried that I won’t be able to get results on Wed (7th April). So phoned my onc and he said that he should get the results straight away. And even if he won’t have the results, it’s still worth keeping the app. (Maybe just to keep an eye on me!!??)

The waiting is a little bit easier now because I’ve got a definite date now. Still wish that there’s quick forward button in life though!

Take care & thanks for the support x

Hi, I hope you get some good scan results…x

Hi m1yu,

Sorry I just got back from Jersey, so I’ve only just seen your post. In my experience in Bristol the scans go straight on the computer, and usually the oncs can pretty much read the scans. What takes the time is the radiologist reporting on the scans. This is my experience in the nhs anyway.

I agree with what eveyone else has said, it is so damn scary when stuff like this happens, but often it results in more effective treatment, and you still have a lot of tools in your toolbox. Easy to say ‘try not to worry’, but it’s really hard to do in these situations, but you’ve got a lot of support here and wih the Bristol group.

Take care x

Hello m1yu,

I’m pleased to hear you’ve got the date for your scans. Celeste is right, the scan results should be on the computer by the time you see Dr P. I’ll keep everything crossed for the results.

Best wishes, sea xx

Hi celeste & sea, thanks for the inside knowledge re scan results. It’s a relief to know that I won’t be waiting & stressing myself out in vain!

It probably will confirm what we already know - growth in old lump and development of a few new lumps, maybe bone mets has got worse. All I’m hoping for is no surprises, PLEASE!

wishing you luck for the scan results -Jayne

Good luck with your scan and scan results next week. Hope you get some good news.

Love
Dawn
xx

My1U another hug.