just wondered how many people are on tamoxifen as well as zoladax. particurlarly if your lump was grade 1.
had talk with onc and she doesnt think necessary especially with grade 1 and the risks thats come with the medication. but my lump was highly estrogen sensitive which i thought may make some difference, but she didnt seem to think it does.
she did say a bit grey area with zoladax use on top of tamoxifen, but at moment no definite evidence of added benefits. trials have been done and some say added benefit, some say no added benefit.
however, despite all above she is happy to persribe and put me on it and understands why i would want to. gona get second opinion from another onc, but wondered what others are doing and what did your onc say why you should go on it. did they say they were benefits. its seem to me at moment it just depends which trial your onc agrees with.
My lump was grade 2 and very oestrogen positive (8/8), I was only put on tamoxifen, never heard any mention of having both.
There was a question as to whether I could have tamoxifen at the start because of the risk of blood clots and my family history, in which case I would have had zoladex or ovaries removed, but in the end they decided I would be okay to have tamoxifen.
Mine was also 8/8, stage 2. Mx Chemo and Rads.
My onc. put me on Tamoxifen only. He said that if my periods come back within 2 years I was to let him know straight away and he’d start me on Zoladex. From what I understand the side effects of zoladex are more severe than Tamoxifen so he avoids if poss. I have not had it though so might be wrong about that.
hi, im on tam and pre meno. my bc was grade 2, i asked about being on both and was told no need at my age i need my oestrogen and its not all bad, my bc was 8/8 also and i still have periods, i am going to question that as some oncs say its not as effective then, however very conflicting info karen x
it is confusing. do you mean then in you continue to have periods whilst on tamoxifen its not as effective??
i did ask should i see if periods stop and if not then go on zoladax. but she said this has no bearing on effectiveness of tamoxifen or anything and wasnt a reason to go onto zoladax.
I was 50 at Dx and my BC was 3cm grade 2, 8/8 er+, HER2 -ve, lymph nodes negative. I was initially offered Tamoxifen + chemo, mostly because of the size of the tumour, but I turned the chemo down because I felt that would be over-treatment in my case. Only then was I offered Tamoxifen + Zoladex. I’ve since discovered that this is in accordance with the NICE guidelines - don’t offer or even discuss Zoladex as an option until the patient has turned down chemo. Which in my opinion stinks - we should have all the alternatives explained to us, not have some treatments held up the onc’s sleeve until we turn something else down. Apparently trials have shown that Tam + Zol is equivalent to one of the older chemo treatments, but not quite as good in survival terms as the more recent chemo drugs. I went for a 2nd onc opinion and the 2nd one said she viewed my tumour as a large grade 1, not really a grade 2, and wouldn’t have even mentioned chemo or Zoladex. I decided to go with Tam + Zol to give me a better long term chance overall without wrecking my life in the shorter term.
The other reason Zoladex is sometimes prescribed is for younger women who may be hoping to start a family after all the BC rubbish is over - Zoladex switches the ovaries off so they might be able to function again later on. I’m not in this situation so don’t know much about it, no doubt others will be able to advise on this.
As to side effects, the younger you are, the worse they are likely to be. If you’re post-menopausal, or heading that way, then your oestrogen levels will already have fallen from their earlier peak. If you’re younger and your ovaries are still working flat out then the step change in oestrogen levels will hit you harder. Either way, hopefully you will adjust to it with time, and remind yourself that the alternatives could be worse!
i havent been advised i need chemo as grade 1 and lymph nodes negative. ER+ her2-.
so to be honest i thought she wouldnt offer zoladax, but she must have known i was going to ask, so after her reasons why it wasnt necessary and side effects outweighing any benefits which are not definitely known - she said however she would put me on it if i felt i wanted to and she understood from my point as patient why i might, but she had to advise from doctor/medical point of view.
i have spoken to my GP about it and he is getting me referral to another onc at other hospital to get a second opinion.
i am worried i am putting myself at risk of other problems ie bone thinning etc which she was going on about my taking medication i dont need- but i do want to take everything going if possible!
can i ask what is injection like - is it a pellet or something they inject as dont know exactly what happens.
It sounds like you’re taking the right approach - balancing the risks against the benefits. There are so many people who take the “throw everything at it” attitude, without weighing both sides. And that’s where advice from the onc is necessary, and if you’re not sure, then take advice from another onc as well.
Your age and the size of your tumour will be significant factors in deciding what treatment to take.
Yes Zoladex can cause bone thinning, but Tamoxifen improves bone thickness, so maybe the two balance out? I was advised to have a bone scan at the start of treatment to provide a bench mark, and I am due to have another one later this year, which will be after 2 years of treatment on Tam + Zol. Perhaps if you have a family risk of osteoporosis you should be checked more often?
The Zoladex injection is a pellet, like a grain of rice. I don’t look so don’t know too much detail! Officially, only the 4 week version of Zoladex is licensed for BC, but my GP switched me onto the 12 version very early on, once it was clear that I was OK with Zoladex, and of course it’s more convenient to have it every 12 weeks.
Many people on these forums say that they have it injected without any local anaesthetic or anything else and find it OK. I consider myself lucky that my GP recommended that I have a dental type anaesthetic beforehand and that’s what I’ve always had, that way it doesn’t hurt at all. As long as I apply sufficient pressure to the injection site afterwards then the bruising is negligible.
I was on Tamoxifen for 6 months after my G2 highly estrogen positive BC. I was offered the possibility of Zoladex and told that it might enhance the effects of Tamoxifen, but that there was no real need to take it and my onc supported my decision not to take it.
I decided not to take it as I was worried about the effects of hormone therapy and it was a big enough step for me at the time to take Tamoxifen. I did not have rads or chemo at the time as not necessary due to size and stage. I had bilateral mx instead due to family history.
6 months after my bilateral mx I had another BC, again highly estrogen positive. I will of course never know if, had I taken Zoladex with Tamoxifen, the second BC would not have developed. Probably it was there all along. But I will always regret not taking the Zoladex. I had to have more skin removed, implant removed, and rads, and am now on Letrozole and Zoladex (I was pre menopausal). I have coped really pretty well with the Zoladex which makes my initial decision not to take it even more annoying.
But I think my story is pretty atypical - certainly no-one at my hospital predicted a path like this.
The injection is ok. Takes quite a bit of effort to organise - get prescription, drop off at pharmacy, collect, go back for injection, make sure next appointment is 28 days later - I know it sounds not like much but every month it can be quite onerous. But if you make sure you get someone experienced, it is not particularly painful. Sometimes it bruises, sometimes not.
If we are looking only to the cancer, it is safest to use tamoxifen and remove the ovaries. Not very big difference but any way it is difference. I am using both of them tamoxifen and zoladex. I am 2 years after dg and still all is clean. My periods still keep going, but I think so zoladex is doing his job.I was in different countries and did treatment also in different countries. Surgery and chemo I did in Latvia, then I went to Israel, Germany and in the end I am in England.Every where I lived 0,5 year and for this I must to get in touch with different onkologists from different countries. In every one country where I have been onkologists told dont be silly you are 42 years old and any way after 5 years you will be in menopause.Better remove ovaries. Just England in this case was very democratical country.Here doctor told everything up to you what do you want to do. And I told - I dont want to do anything. Doctor sed it is also ok - I am supporting you. He even did not try to change my maind. After this I understood no one doctor is not realy interested in my health. I have to think just myself. For this I have to tell dont trust to much alternative methods.
The last funny incident happened a few months ago. I asked my breast surgeon how do I know is Zoladex working if my period is still ongoing? Instead answer he asked to me do you want to stop your periods? My husband who also is breast surgeron told him - before you support any decision you have to explain the differences, because non of the alternative methods are giving completely similar results.
Some studies show that Zoladex reduces tamoxifen-related endometrial and ovarian cancer risk. I am doing zoladex myself - just need to start it is very easy.
Even remembering to book and attend an appointment for the injection every 4 weeks becomes a bit of a pain over time, which is why I rapidly switched to the 12 week version once it was clear I could cope with the Zoladex SEs.
The business of having to pick up a prescription, deliver it to the pharmacy, pick up the Zoladex, then take it with you for the injection, etc, is also a real nuisance. But it depends on how far you live from a pharmacy - if you are more than 3 miles (I think) from a pharmacy then you can get your prescriptions dispensed by your doctor’s surgery, which is what I do, and it makes things much simpler. When I book the appointment for the injection I tell the receptionist it’s for the 12 week Zoladex and she makes sure they have it in stock in time for my appointment.
My GP prefers to do the injection herself, not sure why. I think the nurse usually does it at that practice.
When I started to use zoladex I just did an appoitment with nurse who is doing injection. I even did not take a care how they get zoladex from chemistry.To be honest I worried a bit about - is zoladex helping or not. I am thinking about ovarectomy. I am looking to my friend she did ovarectomy at 26 and my doctor also did ovarectomy at 34 and they are fine (no any hard side efects). This is not easy to decide. My lump was about 80% Er+ and Pr+.
I am on Tamoxifen - ER+ and HER2+++. I also had Zoladex for several months with no problems. I did not need a local anaesthetic- it just smarts a bit. As someone said, the worst bit is collecting it from the chemist, and taking it to the GP’s every month. I decided after about 10 months to have my ovaries removed. I am very happy with the decision, and have had no more extreme menopausal symptoms than I had whilst on the Tam with Zoladex.
My bones have shown signs of thinning, so I will be kept on Tamoxifen for another year, before changing.
I was put on Zoladex & Letrazole after being taken off tamoxifen due to blood clot, I too am every 12 weeks, no real Se’s to report, had periods all through chemo & whilst on tamoxifen but they stopped with letrazole & Zoladex was age 40 at Dx & Er +++++ & Grade 3. X
Good morning,
I’m having tamoxifen and zoladex. My periods stopped whilst on chemo, i then started tamoxifen and was told if my periods returned to contact the hospital. It was then suggested that I have zoladex too. They don’t know whether having the zoladex and tamoxifen together adds extra benefit but there are trials going on now so I will know in 2 years whether it has given me extra benefit. There may be some emerging findings later this year. I was 39when dx and had large 76mm tumour, multi focal, her2 pos, Lvi and pos nodes so would rather be over treated than under. Some oncs believe the zoladex doesn’t add any benefit. My periods have stopped since zoladex, I am suffering with low mood, fatigue and flushes. Not sure if this is the Herceptin, the tam or the zoladex. 2 more herceptins to go and hoping the side effects reduce then.
I don’t have the problems getting the zoladex prescribed. I presume my GP dies this as I just turn up at my GP surgery once every 4 weeks and the duffers nurse gives it.
Lisa xx