sorry, dont know wether this is in the correct section but i would like to know what my surgeon really meant when he said that I was very very oestrogen positive. I have been told by my oncologist that I can have zoladex if i want but my surgeon is suprised that i have chosen(with support of gp and oncologist)not to have any hormonbe therapy. have i made the correct decision??
oestrogen positive is a good thing in terms of BC… if its strongly oestrogen positive (ER positive) then your cancer responds well to hormonal treatment like tamoxifen which will help prevent the risk of recurrence… however if you choose not to use hormonal treatment then there is a higher chance that your cancer could recur.
not all cancer will recur and it would also depend on the grade and stage of cancer. so its very vague and like everything you can lie on either side of the statistics… eg people with a poor prognosis or out look can never get a recurrence where as somebody who look to have a really positive outcome may not be so lucky.
ultimately the choice is up to you but perhaps you may want to consider other options depending on your age and plans for the future but having your ovaries removed can be useful in preventing recurrence of BC… im presuming your premenopausal seeing tehy offered you zoladex.
Hi Jadanpan
Obviously I can’t advise on your decision, but I definitely wanted endocrine therapy-tamoxifen- for my ER+ bc, and am thinking about what I will do if my periods do return-zoladex or ovarian ablation of some sort. If your team are supporting your decision then it sounds like you have talked and thought things through with them, and weighed them up, but I am not surprised that the surgeon wants you to be sure about your decision.
C
can i just ask why your not wanting the hormonal treatment?
Lx
The way my team talked to me it would have been better to have been hormone receptive as they would have had more option in terms of treatments. I am triple-neg and only have chemo as option but i am surprised your onc and especially your gp prefer you not to have it.
I know you know better about what is going on with your plan.
Good luck with your decision.
reneexx
renee thats why i was asking as being triple negative too it would have been great to have had the opportunity to prevent further recurrence, but i know we are all individual and that jadanpan prob has very good reasons not to take up the offer of hormone treatment.
Lx
jadanpan - From your question, it sounds as if you don’t really know what you have agreed (or not agreed) to in the way of treatment. As the others have said, being very hormone receptive gives you another option for treatment and, therefore, another chance of not getting a recurrence.
If you had fully understood, maybe you would have made a different decision and you really should talk it through again with your oncologist. If he/she thinks this is your informed choice, he/she may well support you, without realising that you didn’t really understand the implications when you decided. He/she should have explained all your options to you before you made your decision.
Ann x
Hi jadanpan
As well as the support you are receiving from the other users you may find it helpful to give the BCC helpline a ring. Here you will be able to talk this through with a trained member of staff who will offer you a 'listening ear as well as support and information.
The number to call is 0808 800 6000 and the lines are opsn Monday to Friday 9 to 5 and Saturday 9 to 2.
Sometimes just talking things over can help you to see things clearer so please do give them a call.
Best wishes
Sam, Facilitator
hello all
thank you all for your comments.Just to fill you in i find looking at the forums dificult because i feel that my problem is minor considering my situation and feel guilty bothering you with what i consider a minor point, perhaps that is where i am wrong i just dont know. anyway i was diagnosed in 2007 sept after routine breast screening and treated promptly with a wide angle excision and radiotherapy. i had two lesions in left breast, one was a carcinoma in situ high grade having had an undiagnosed adenoma for some years, and the other was a grad 2 15mm er positive carcinoma. i was put on tamoxifen( iam 54 years now and not menopausal)and within 6 weeks had a blood clot,and muscle pain which developed into severe debilitating cramps which just about left me able to walk. In consultation with my onc who told me the advantage of hormone therapy to me was statistically only 2% and agreed that I should come off tamoxifen. my periods returned with a vengeance after 4 weeks, caused me lot of angst I wondered whether this was the menopause. my onc had referred me to a rheumatologist who told me the cramps were not caused by tamoxifen so I started the tamoxifen again. same problems restarted within 4-6 weeks, tried tamoxifen again for few months came off with support of onc-quality of life decision etc.suggested i could try zoladex,or nothing.got prescription for zoladex from GP who told me that i was taking tranexamic acid for pain (not so). changed GP to GP who is also a friend and he declined to give me the injection, he talked to onc and that is how it has been. I have also been to a vascular surgeon to see whether cramps were vascular in origin,in amongst all this. so having been settled with my decision for some months to revisit the surgeon who doesnt read my notes properly before questionning me is somewhat unnerving which is why I am pestering you all with such a minor problem now.Should I have the zoladex or not…i’m back to where i was 18 months ago…my periods have not declined but are now back to normal and more regular than they have ever been 28 days on the dot.
many thanks for your comments and help
jadanpan, tamoxifen may not be the only option. Have you asked if AI’s are an option for you?
Hi Jadanpan
My cancer was oestrogen receptive. I was told it was 8/8 oestrogen receptive and 8/8 progesterone receptive so about as high as you get!
I’m 46 years old on tamoxifen but currently exploring the possibility of having my ovaries removed.
Given that you are 56 and have had period problems too I can’t see why they haven’t suggested an oophrectomy (ovary removal). I know they’re not so keen on younger women because of the associated problems with menopause. Zoladex switches off the ovaries but there can be side effects with those.
I don’t know why I haven’t been offered either zoladex or ovary removal given the hormone status. I can’t help feeling that cost saving is going on but I hope I’m wrong.
I spoke to my gynaecologist earlier this week who is going to see if she can get this done for me. If it’s straightforward she said it’s only a 10 minute operation.
If your GP is your friend I would start by talking through these options with him and see why he declined to give you the zoladex and what he thinks about an oophrectomy. If it were me I would some sort of cover with a hormone receptive diagnosis.
take care
Elinda x
Obviously you would only be able to take an AI if your ovaries were no longer producing oestrogen. Hope you get it sorted soon.
Ann x
Hi Jadanpan
From what you have said, I also think it would be a wise move to ask more about alternatives to tamoxifen. I hope you get the information you need soon, and they can give you some clearer idea of which options would be best for you.
Elinda, I was interested to read your post because like you I have been thinking about a more permanent means of switching off my ovaries. I am 38, also 100% er,pr.
I have been asking about zoladex and oopherectomy, but my clincal onc said recently that when tamoxifen appears to be working (I’ve been on it for 18 months, no periods since chemotherapy), and there is not a BRACA gene involved, the evidence does not suggest that other forms of ablation are beneficial. Once I have been on it for about 2 years, they will begin to look at whether menopause is permanent, and whether AI’s are the best way to go from there.
He did suggest I discuss it further with the medical onc to get her opinion on it in a couple of weeks.
It is interesting and I do wonder what would be best; I know that other women have been given different information and have had an ooph, or combine zoladex and tamoxifen. I wonder if, as well as the individual views of the oncs, factors very specific to the pathology make a difference. All the best with your gynae appt.
Take care all x
hello all
thank you for your comments. can someone help me with - what does 100%oestrogen positive actually mean…
does it mean that the smallest amount of oestrogen produced by my ovaries and soft tissue has more potential to create a breast cancer or does it mean that the cancer will grow more quickly. does it mean that the cancer cells have more receptor sites on them which means you need more tamoxifen to block them, therefore some remain unblocked…why does it sem to be a problem if you are very very oestrogen positive compared to being slightly.
i have asked my onc all this before and i get shown adjuvent online as the sole means of decision making of my adjuvent treatment
thanks again your comments are helping me sort throughthis
jadanpan - I was 8/8 ER+ and 7/8 PR+ and I assume you are also 8/8 ER+, from what you say. I didn’t think that was a problem, as you have said. I looked upon it as a positive thing, as it means the Tamoxifen or aromatase inhibitor is more likely to work, than if you were only weakly oestrogen positive. I don’t know all the technicalities but, as I understand it, oestrogen is the fuel for hormone receptive cancer and, yes, there are more receptors if yours is strongly oestrogen positive. I don’t think it would mean that you would need more Tamoxifen, although the thought had never occurred to me and I can’'t say I actually know, as I am on an AI, anyway. I haven’t heard that it means the cancer grows more quickly, either, as the most aggressive cancers are often hormone negative. Whether it means that the smallest amount of oestrogen has more potential for causing harm, I don’t know. Sorry I can’t be more help. Maybe someone else will know more.
Ann xx
Ann and Jadanpan
you have raised some interesting questions, I had assumed that 100% oestrogen positive meant that they were sure that it was fed by oestrogen (my own take on what was said!)
However after I have had my ovaries removed because of being 100% oestrogen positive and taken Tamoxifen, then Aromasin, my cancer has come back!!
Which appears to not support what I thought was the case.
I will be also interested in somebody who actually knows explaining this!
Take care and enjoy your weekend,
nicky xx
thank you Nicky and ann. Yes i hope someone who really knows will be able to asnswer this. Or maybe in truth nobody really knows!
enjoy the sunshine
Hi
My understanding-and that is all is!- was that although the majority of oestrogen is produced by the ovaries, smaller amounts are also produced in other areas,(such as adipose fat, I believe), and through other body processes.
My interpretation of what the oncs have told me is that when cancer cells are highly hormone receptive, blocking the receptors from receiving that hormone, or limiting the amount of hormone produced gives a greater chance of preventing cancer cells being fuelled.
So the more er positive, the greater the possible benefits of trying to block/limit the oestrogen, rather than that doing this always stops cancer cells dividing.
Hopefully some other posters will know more, or be able to correct me.Take care.
Cxx
nicky - I am sure your assumption was correct, in that it does mean that the bc is fed by oestrogen. However, I suppose the problem is that the treatments are not always 100% effective, but they have a better chance of working the more receptive the cells are.
Ann xx
but if the breast cancer has been removed with intact margins , with no nodal spread and have had raiotherapy,whether it is er positive is of no relevance then. is it true to say(which my onc would have me believe) that in these cases hormone therapy is of little use then. or am i taking hormone therapy to cut out the oestrogen to stop it changing normal cells into breast cancer cells. so sorry to persist with this but i am hoping i can finalise this in my head without pestering my long suffering gp yet again