Good evening ladies,
Well I got my results (or partly) yesterday. The good news is that the lymph nodes are all clear (had WLE and Sentinel Lymph Node Test). I still have to have one month’s worth of radio-therapy and five year’s Tamoxifen. But I guess that means I am HR+. Nothing has been explained to me yet, hopefully I will find out answers when I meet my oncologist in two weeks time. the consultant seemed very busy yesterday and he was running an hour and a half late, it was like Chinese torture waiting to see him (not meaning to offend anyone!)
Can anyone explain a bit more to me about the hormone thing. will this bring on my menopause (I’m 44) and are there any side effects that are common.
Thanks ladies,
Ladelaxx
Hi Ladela
Whilst you await replies from your fellow users, you may find our factsheet about Tamoxifen useful to read as it contains information about side effects:
breastcancercare.org.uk/docs/tamoxifen__november_06_0.pdf
If you need any further advice or wish to talk through your results with someone in confidence, please call our helpline on 0808 800 6000 which opens Mon-Fri 9am-5pm and Sat 9am-2pm.
Best wishes
Lucy
Hi
If you need tamoxifen this means you are ER+ which is a good thing as it means your cancer is oestrogen positive and can be treated well with tamoxifen. If you are HER2+ you will then need Herceptin. If they have not told you you need herceptin you must be her2- which is really good news. Her2+ cancers I was told, can be faster spreading cancers so it’s better to be negative - the good news if you’re her2+ is that herceptin is now available and is a very good drug, putting us on equal footing with her2- patients. So… hope some of that makes sense. I am both er+ and her2+ and was told that the tamoxifen was likely to put me into early menopause, I am 39. Congrats on results through, really good that theres no spread to lymph nodes. Good luck with everything, Carrie
Hi Carrie,
thanks for that, it makes more sense now. Good luck with your treatment.
Ladela x
Hi Ladela,
Good news that your lymph nodes are clear, I know we chat on another thread but saw your question and you sound a bit similar to me. I’m 39 have been on tamoxifen for about 6 weeks and also on zoladex injections to shut down my overies. So far my side effects are minimal. I get the odd cold shiver and hot flush but not sure if thats not the weather.
I’m coming to the end of a month of rads (15 normal and 4 boosters…I start the boosters tomorrow…ony 4 left) I am grade 2 1.8cm er+100% pr+ 80% her2 -
Hope this make sense, if not give me a shout. Good luck with everything and I will catch up with news on the other threads.
Love Shonagh xx
Hi Ladela, Excellent no node involvement : ). Also good you have a date to see oncologist although you are still on the waiting train!!
Not so good you felt consultant was in a rush, it can be unsettling. Make sure you write down anything you want to ask the oncologist, I regret I did not and went alone and it was awful.
Take care love Alicexx
Hi Ladela,
I too was 44 at dx and my treatment has brought on the menopause, tho’ I have had chemo too. Yes I get menopausal symptoms and it sucks, but I guess I would have got them anyway a few years down the line.
Shonagh - spotted you!!! I was reading your message and thought oh yes that sounds like my friend from the hospital… It was super-quick today - I was straight in after you and they said I must be getting used to getting in exactly the right position. They said “you can come again”!!
Probably see ya soon in your party frock! Only 3 more to go now - hurrah!!
Nicola
x
PS Just occurred to me that you might actually be someone completely different in which case just ignore the ramblings of a mad woman!!
Nicola,
No Its me…well spotted. This is really spooky I was just saying to Phil on the way home tomorrow will be the last time I see you because we have afternoon appointments next week and I was going to say to you look out for me on the web site if you fancied a chat and here you are!!!
See you tomorrow?? I’m in at 11.15am. 3 to go Woo Hoo!!! If I never see that junction of the M56 again I will be a happy woman!!
Shonagh xx
Hi all,
its good to hear you are doing well. I`ve finished rads and now on Arimadex as I am post menopausal.
I was tired at the end of rads but now 4 months into Arimadex and back to work and feeling OK.
best wishes
Margaret
Hi there ladies,
Good to hear you are all relatively well (if you know what I mean!?!) I am thinking about going back to work after Easter hols and working around the rads, do you all think this is a good idea, how have you all juggled work and rads,treatment etc. I also have an hours journey at times to get to the hospital but thought maybe I could work in the mornings and go in the afternoon. It’s hard getting suggestions about this from family because they are too close, so your feelings on this would be greatly appreciated. Also should I start rubbing cream in before I go to have the rads, are you allowed to do this? No sure. I wish one of you were down my way in the New Forest and having treatment at the same time, if you are let me know.
Take care all and I was really glad to hear from you.
Take care, oncologist next Tuesday, not long now, RADS here I come!!!
Love Ladelaxx
Hi Ladela,
So glad you are finally starting your rads soon, I finished my 19 today. My trip was around 3 hours a day (allowing for delays) so working through would have been a real pain. If you feel like you could work through I’m sure you could. I got quite tired about 3 hours after the treatment. I’m sure if I had to I could have worked and my BC nurse said to stay off if I could. I think sometimes we need to be good to ourselves so all I would say it take it easy especially if you have quite a journey.
I am having another two weeks off and starting back to work on the 1st April (earlier than first planned) as I want to get back to some kind of normality but am doing a phased return of 3 days for the first two weeks and then 4 days for the next two a weeks holiday and then back full time.
Working in the mornings and rads in the afternoon sounds like a sensible plan to me, I cant imagine wanting to go back in afterwards. Not that it hurts or anything, just lots of lying on your back with your boobs out!!!
Oh and on the cream front, I put it on for two weeks before and am really pale and quite dry skinned and my skin has held out really well, just a bit pinker than normal so I would definately start now if you can.
Good Luck with everything. Love Shonagh xxx
Carrie
Whilst Herceptin is a fantastic drug for HER2+ cancers, it is only given if you undergo chemotherapy. If you are HER2 positive and do not undergo chemotherapy you will not be given Herceptin, which is unfortunate for me as, along with being ER+, progesterone pos & HER2 pos I will only be given Tamoxifen if I am pre-menopausal or Arimadex if I am post-menopausal (am awaiting bood tests). I have just finished undergoing 20 rads but did not need chemotherapy but despite being HER2 pos, I will not be allowed Herceptin. I have been told by the Onc that my HER2+ status is of ‘low amplification’ which is reasonably good, but wish I could have been HER2neg.
If you’ve been offered Herceptin presume you must have or will be undergoing chemo?
I find the HER2 thing all rather worrying though!
Monica
Thanks Monica, have just started my rads this week. Fortunately I don’t have to have chemo as I am HER negative so that was good. Just can’t wait for this all to be over. Tamoxifen is making me feel low and a bit nauseous in the late afternoon, evening, I hope my body will get used to it soon, I have also been spotty, which I haven’t had since I was a teenager?!? So I am not happy about that, but hey, I’d rather put up with all this stuff if it means I get rid of this damn thing. 12 more rads to go. Hope you are doing ok and thanks for the reply. Sorry I haven’t been on for a while.
Sharon x.
tamoxifen made me feel nauseous to start with and had indigestion and constipation. It does not bring on the menopause - I found it made my cycles longer though and reduced the flow. I continued to have periods throughout 2 and a half years I took it (I gave up as constipation never went, plus metallic taste in the mouth plus constant hot flushes)
Tamoxifen is actually used as a fertility drug so you have to be careful with contraception, there’s a limited number of ways of achieving this as you can’t use hormonal contraceptives such as the pill. I had a coil fitted, a mirena but there is controversy over whether this is safe or not after breast cancer. My view is it is, but others think differently. I got advice from my consultants before i got it fitted, the consultants were at a breast cancer centre of excellence so i think they could be trusted.
Tamoxifen halves your risk of recurrence, mortality and of getting breast cancer in the opposite breast. My risk was low as I had low grade cancer, which is why I was prepared to take the risk of giving it up. Maybe I would have felt differently if I’d had higher grade cancer.
Some side effects recede with time, e.g. nausea, others increase, e.g. hot flushes - at least that is what I found
Mole
I’ve been on tamoxifen for nearly 2 months now and have got on ok - apart from being decidely warm in bed at nights and a nasty thrust like itch at the time of the month (it goes away as soon as my bleeding - or rather spotting- stops but I’ve got the canesten cream at the ready for next time). I did have a little bit of constipation to begin with but not sure if that was due to the pills or due to a total disruption to my routine - shorty after starting the hormone treatment I also started rad so I am at the hospital every afternoon and not really eating as I would normally in the evenings.
With regards to the birth control … I had a mirena coil fitted last August … ironically I had asked to go back on the pill and the GP said a big no-no as I was 40 and had been/was a smoker… she said going on the pill increased my chances or breast cancer … I was offered the implants or mirena coil and opted for the mirena as I was told this was more likely to stop my periods (I wonder if I will ever follow the theory … I didn’t get the pill but still got the BC and despite mirena AND tamoxifen I still have a period!) Have read of many ladies being told to have the mirena removed but so far no1 has advised me to but do plan to discuss it with onc next visit.
Hi i think the big mirena coil thing is to do with your pr status i was er- and PR+ so was told to have mine out immediately, i am also like you lilacbushes my periods are still here dispite the chemo and tamoxifen, i am sure i have read somewhere that if the tamoxifen doesnt stop your periods they either operate or swap drugs
Anna
I’ve been on tamox for just over a year now with no side effects.
Did get lots of spots on my face when I first started taking it but they soon went.
My periods stopped during chemo and I’ve only had three since then last Summer.
I’m 44, her2+ and pre meno.
I am progesterone + as well as oestrogen + and i still got the mirena
Mole