Hi Sam, it's the amount your pathology result responded to estrogen (ER). So 8/8 (ER+) is highly responsive to estregen (receptors / protiens in the cancer cells feeds off the estrogen in your body) 4/8 is borderline, it responds to estrogen but not so high. I think anything below 4/8 is classed as ER negative but I stand to be corrected.
Hi Tracy, not sure if this will reassure you or not, but according to my Oncologist and Gyneacologist blood tests to check hormone levels are pointless, while on Tamoxifen. I like you am 8/8 and when I had my first period back in January they ordered a blood test to check hormones, and my estrogen levels were off the chart!! Which seems worrying, but they said it wasn't a problem. Who knows!
But I do think you should still be seeing an Oncologist, as you are on Tamoxifen. Do you have a BCN who you can contact IF you do have any issues? I had moved to 6 monthly appts, well until I had the back pain. Although I hate going to the appointments, I do appreciate them keeping an eye!
Maybe discuss with your GP?! If you feel you would like to see someone regularly.
Hope you have a lovely weekend xx
Not doing too bad Sal thank you.
To be honest the only thing that bothers me is lack of after care (for me anyway). As soon as I finished rads I was signed off from oncology however a friend of mine who was diagnosed 3 months after me and attends the same hospital as I do, still see's her oncologist every 6 months. We're both on tamoxifen, she was 4/8 (borderline) and I was 8/8 estregen positive however she still gets blood test to check hormones every 6 months. Unfortunately her hormones are on the rise and she's been advised she may need her ovaries removing. What concerns me is my hormones may be on the rise which will seriously compromise me being 8/8, but how will I know without appts or blood tests. I thought no periods was a good sign (neither of us have had a period for 18 months) however her oncologist said you can't be ruled by this.
Maybe I'm over reacting but it's certainly playing on my mind. I was told tamoxifen for either 2, 5 or 10 years but goodness knows who will make the decision if I'm not seeing my oncologist.
Well feel better now I've had a rant 😀
Have a a lovely weekend all XXX
Love and hugs swinging your way Sal. Sorry you didn't get the full all clear results you wanted but take comfort in the fact your oncologist isn't overly concerned and that Janes been through a similar situation with a positive outcome. Also I should imagine your oncologist would certainly try talking you out of stopping tamoxifen if they were worried. I hope the break gives you the good nights sleep you need and the aches subside.
Sounds like you've had a fab time in the US Sam, enjoy your remaining days and have a safe journey home XXX
Tara have a fab time in San Francisco, hope you're enjoying being a lady of leisure XXX
Jane hope you're keep well and living life to the full XXX
love to you all
Thanks Sam, it's just the feeling of this never ending. That really gets me down! BUT I suppose that's life 😉 Sounds like you are having a great time 😀 so pleased for you xxxxx
Yes, try and put it to the back of your mind and enjoy life! Sounds like the best way forward! I think we are all trying to live in the moment. Jx
Thanks Jane and Tara, hug gratefully received.
Feeling a bit fed up that things are being dragged out for another 3 months, but I suppose I should be grateful that they keep a good eye on things.
Jane it's good to hear that you had a good outcome when they found something on your scan! I hope for the same. I taking the fact that the Oncologist didn't seem overly concerned, as a positive! But who knows. But I am determined not to worry about it for the next few months. I want to try and enjoy life for a bit 😃 xx
Oh Sal, I'm sorry you have yet another anxious wait for results. I had a similar thing when I was first diagnosed and had to wait 3 months for another scan before they were satisfied that it was nothing as they had seen something on my spine so i can relate to how you are feeling.
Good that the oncologist gave you some leaway with regards the Tamoxifen, without having to fight for it.
Sending you lots of love and a big supportive hug and I hope you can switch your mind off and have some fun and relaxation if you can.
Hi all, well sadly I didn't get the complete all clear 😐 but let's face it that would be a miracle. Back and hip were fine, but had 2 areas on my chest bone which showed up! So I get to endure another scan in 3 months!! When will all this end?!
on a plus....Oncologist suggested stopping Tamoxifen for a bit, just to see which of the aches and pains it's causing. Was nice for him to suggest so I didn't have to explain why I wanted to stop 😃 So going to try and get on with enjoying life for a bit, and worry about the scan nearer the time 😉 xx
Hope you have a great time Tara.
The sleeping pills failed dismally! The job is 'ok'! I go in for results of my bone and CT scan tomorrow, so feeling a little anxious....even though I'm 99% sure it'll be fine! Will also discuss/tell the oncologist I want to take a month or two off from Tamoxifen! Sense I might have to explain my reasoning, but as my BCN said, they can't force you to take the drug....just advise! Xx
Hello everyone. I was thinking it was really quiet on here but realised when I opened up the 'November Newbies' that I'm not getting notifications of when someone posts anymore.
I hope the sleeping pills have helped Sal and glad you caught up with the old charges. Are you feeling more settled in the new job now?
I seem to be really busy all the time and havn't leant to relax yet. It seems there is so much to do to catch up on all the things I've been putting off doing for ages.
I am off to San Francisco on Saturday to visit the family which I am really looking forward to.
Will be in touch when I'm back. Lots of love xxx
Hi all, hope everyone had a good weekend. I went to see my old charges which was lovely, and just what I needed to take my mind off of things.
wanted to ask you all a question. Have any of you taken sleeping tablets throughout all this? If so, did they work? My Oncologist gave me some for a week, to see if that would get my sleeping pattern back on track! But they had no affect whatsoever! I actually took longer to go to sleep, and woke up just as frequently?!
Anyway hopefully I can get the all clear from the scan and then have a break, and just see IF all this is down to Tamoxifen or if there is another cause?!
Sending lots of Love to you all xxxxxx
Hi everyone and welcome to those of you who have 'popped in' and I wish you lots of good wishes and love for your treatment.
My first week of freedom has turned out to be pretty manic. So much to do that I've been putting off doing and lots of social engagements. I am actually feeling really stressed still so need to just put life on hold for a bit and try and get myself to a more relaxed state.
Our internet connection is rubbish at the moment and we keep loosing it so I need to get that sorted.
Love to everyone xxx
Hi Sal, yes all good up here in wet Cheshire - its grey and miserable outside. I've done school run, been to B & Q to buy more paint pots for my pebbles, had my car cleaned and now i'm gonna have a coffee and a bit of a clean in my house before i carry on painting 🙂
I'm doing alex's school Xmas fair so i bought lots of pots yesterday, mum is knitting me some little hats to put onto my santa pots and i'll do some poinsetta ones too. Its on Dec 4th so i have a few weeks. I'm going away though next Thursday - my USA trip has come round already - cannot wait.
I'm not surprised youcan't wait for the weekend, 9 days straight is crazy. Did youget to see you old charges in October at all ?
Ayway, i hope you have a lovely relaxing weekend.
Everyone else i hope all is well
Love Sam xxxxx
Hi All, hope everyone is having a good week. I'm looking forward to the weekend. Having just worked 9 days in a row! Seriously I'm getting too old for this. On a plus Z has been on very good form for the last 2 days, having been full of cold and cough previously! I am just hoping and praying to keep germ free. The thought of having a scan with a cough, doesn't really appeal.
Tara how was your first week of freedom? Bet it feels odd not going to work. Hope you are doing some fun things and spoiling yourself 😉 you deserve it.
jane how are you doing? How's the foot? Hope it's feeling a bit better and not stopping you taking the dogs out !
Tracy how you doing? Busy with work and life 😉
Jen not long now till your break away! Bet you're counting down the days 😀
Sam, how's the plant pot business going? Sounds like the pots have been a big hit. Which is understandable as they look great.
Anyway, wishing you all a lovely weekend. Hope you have a good one! I intend to catch up on some sleep (hopefully) and do the last of my Christmas shopping! 😋
Sending lots of love to you all 😘😘😘😘😘 xxxxx
Hi Babypink, hope you are enjoying your holiday! I have seen you on previous threads. There is a thread for Nov 2015 newbies where everyone on there is starting their chemo this month? Come and join us! X Lesley x
Thanks Jobey I really appreciate your message 😉 I'm used to talking to myself......in real life too! 😉 xx
Sam and Tara, good to hear from you. Tara hope you enjoy your free time. Can you fit in a meet up some time soon?! I could do with something to look forward to! Xx
I'm Back! Haven't been able to get on for several days as my internet hasn't been working (again!!). Yes, I am now a lady of leisure - well, at least temporarily while I try and de-stress for a while. Yesterday I woke up in a panic with the realisation that I no longer have a job. Feeling a bit insecure and pretty emotional but I think I've done the right thing. It's going to take a while for me not to feel I have to be rushing around trying to get everything done immediately.
How are things with you, Sal? Hope you are able to have the much needed tamoxifen break.
Hello Jobey. Nice to see you here. Where did you pop up from?
Love to everyone else xxx
I'm here but still no access on my phone and this stupid forum logs me out even up trying to help me. On my phone it says i'm not authorised ????? I stared this b****y group - can you tell its now really annoying me ??? I want to be here for you but i can't be 😞
Anyway, i'm up and put on my PC to say Good Morning 🙂 xxx Just taking Jamie to school, Alex is still off on an inset day. We are heading to Llandudno today although its incredibly foggy so we will wait couple of hours. I'm going to raid the beach for pebbles.
So Tara, are you a free woman now ?
Morning Jobey, which group are you from ? I love it when people pop in, i hope you are doing ok xxxxx
Hi everyone else too 🙂 xxx
Forgot to say.....
Tara I hope your last day went well! A new and fresh start for you, in whatever you decide to do 😃 xx 💐🍀
just had a call from the hospital, my bone scan is booked for Nov 10th! Fingers crossed I get the all clear so I can have a much needed Tamoxifen break!
oh and Sam I tried the Tumeric, it appears I am allergic to it 😒 so no good for me, but glad it is helping you! Xx
Thanks Sam I will definitely give it a go.
Well I saw the Oncologist this morning..well one of his minions! As expected she has requested a bone scan, just to make sure there's nothing going on! I was a little surprised that she didn't even examine me, just said she would book the scan!
We chatted about stopping the Tamoxifen, and my reasons why. She then suggested I could try the Zoladex injection and then the drug used by post menopausal women! I said no thanks!
I had a long and emotional chat with my BCN, and I have decided that assuming the bone scan is clear, I am going to take a few months break from Tamoxifen. I need to give my body chance to get back to whatever normal is! I can't carry on like this. My BCN was very understanding and even commented that I didn't look well, she could see a big difference from the last time I saw her.
I know stopping it is risky.......but I honestly need a break! I have had enough!
So fingers crossed the scan is clear and I can have my much needed break 😉
Also had a blood test......oh my goodness talk about Dracula!! It hurt while she was doing it and I now have a dark blue bruise right down my arm! 😳
sending Lots of Love to you all xxxxxxxx
Good to hear from you, Tracy and glad to hear you are doing ok. Yes, I am still hoping to use my nutritional therapy qualification. I've just done a consultation with a friend and feeling quite motivated.
I take a turmeric supplement too, for its anti-inflammatory effect, but am interested to try the paste. I might compare the cost as the tablets are pretty expensive.
Gosh, the nights are drawing in!
Take care all and sending lots of love xxx
Hello all, I'm still around checking posts XXX
Glad you're getting some relief from the aches Sam, definitely worth giving the termaric a go Sal. I've taken it for over 2 years in a capsule for RA but the paste is supposed to be the business. I wonder if this is why I don't suffer do much with aching joints 😝
Thanks for the recipe Sam, I'm going to give the paste a go.
Sorry you're still going through crap Sal, this new job was supposed to be a new start for you. I really hope things improve for you and you're able to carry on in the job you love.
wishing you well in your new venture Tara, are you still looking into nutrition?
take care all, thinking of you XXX
Ok Sal, as promised. Please try this recipe. I was very sceptical at first but i really do think it is working. I bought a silicon pan mat and you can turn it over, spread the paste onto it and then freeze it. You end up with loads of little tablet sized pellets that are easier to take. I find this way much easier as i hate the taste but i take it with my coffee in the morning.
I have found that I am not as achy so maybe worth a try for all of us 🙂
Very busy trying to get everything finished at work so just a quickie. I'll have more time from next week.
Sal, I have so many of the same things as you - and that is partly why I have decided to give up my job. But that was my personal choice and you should not be forced to have to do that. I keep being told that tamoxifen only increases our chances by such a tiny amount, although others say it is keeping us alive so I really don't know what the truth is. If you can get an honest answer from the oncologist then I'd love to hear it. I really hope you get something sorted so you can claim back your life!
I was at a cancer support day yesterday where there were 6 of us and all of us are experiencing a whole load of beastly side effects.
When I saw the registrar breast surgeon last week. His only suggestion was to take Evening Primrose Oil for the pain in the breast area. I'll give it a try but am going to be rattling with all the supplements I'm taking to counterract the side effects of my enforced menopause and all its related problems!
Lots of love to everyone. xxx
I've just come on for a moan really! I know I can say what I want on here and you will all understand.
I have an appointment with the Oncologist tomorrow. I was having back and hip pain (that I wasn't that worried about) but BCN said I should see the doc to get checked out 😐
While I am there I'm going to mention wanting to stop the Tamoxifen again 😒 I know how important this drug 'could be' BUT I am so unhappy and I just want to get some sort of quality of life back 😢 Obviously I don't want a recurrance. But I can't deal with trying to work full time while coping with:
Lack of Sleep
Bone and Joint Pain
stomach cramps (monthly)
Think that covers it. I'm trying so hard to ignore all the side effects. But it's hard, and I'm getting to a point where I am just too tired to do anything 😢 Everything takes such an effort.
This job 'should' be my perfect job. But I am struggling 😥 Struggling to get through each day 😢
i'm reaching a point where I either stop the Tamoxifen, and see if that helps. Or give up on nannying 😢 The one job I have always loved 😢
I thought at the beginning of all this they said that if we give them a year of our life, they would give us our life back?! It's been over 2 years and I'm still waiting 😢😢😢😢😢😢😢😢😢😢😢😢😢😢😢
Feel free to tell me you are all suffering with the same problems but that you are getting on with life, maybe it's me! Maybe I am being a wimp! Maybe I am expecting too much?! But all I want is to be happy and feel like a 40year old, not a 90 year old.
sending lots of Love to you all.
Tara hope you enjoy your last week at work 😘
Had appointment with surgeon this morning. He had a fondle and said he was happy and I don't have to go back for a year!
Good luck tomorrow, Sam.
How's the job going, Sal? Less than two weeks to go for me!
Love to everyone else xxx
Thanks for your advice everyone. It looks like I don't really need to worry as long as I walk around and drink lots of water (which I tend to do anyway). It's an 11 hour flight I think. I do rather like a glass of wine on a plane journey though.
I hope you don't have to wait too long for your results, Sam. Have a lovely time on Saturday.
Love to everyone else.
Good to see you back on, Sal, and really hope everything is calming down for you.
Only 3 more weeks of work to go for me. Can't wait but I'm starting to panic a bit about the financial side.
Seeing surgeon on the 20th and need to ask about tamoxifen and long-haul flights. I know quite a few of you have flown to the US since starting on tamoxifen. I'll be going to San Francisco in November so any advice would be appreciated.