Today, I have finished my 5 years on Tamoxifen. I feel the need to continue on treatment to avoid the risk of a recurrence but, my oncologist doesn’t feel the same way. He also said that, because I am 43, and my hormonal status is unclear, I can’t be put on Letrazole. However, he had agreed to see me within 3 months time to discuss my options. So far, this are my alternatives:
To go on on Tamoxifen. I can’t do this as the lining of my womb is too thick.
Zoladex. I am considering this but the thought of a needle of the size of a drill on my stomach, deeply distressed me.
Prophylactic Oophorectomy. I am quite scared about this as, I have a big cyst in one of my ovaries so, key hole surgery is not an option.
Could you tell me what have you done after finishing your Tamoxifen. My cancer was very strongly hormone positive, both, estrogen and progesterone. I can’t bare the thought of my body producing any more fuel for another cancer. I am terrified of a recurrence and I know that, in the case of Hormone positive cancers, the likelihood of recurrence are between the 6 and 12 after dx, often with metastatic disease, specially on bones.
i didnt know about the likelihood of recurrence with hormone positive, is this with all hormone lumps. other factors may also have bearing ie what grade was it, size etc??
has your onc commented on this recurrence stat or on your risk?
it must be very difficult for you. is the 3 options which your onc has given?
hopefully some ladies will be along shortly with experience of zoladax and oophorectomy. i know there are lots of ladies on here with experience of both. hopefully they will be able reassure you on both options.
Hi, I hope someone answers you. I am 8/8 er + and just started tamoxifen in october, I’m 41, I know there is no guarantees in life or with bc. I also never knew about recurrance rates for this, maybe I didn’t want to know. God willing I get to five years I am very interested in seeing what answers you get. If it was me I think I would get ovaries out and then put on to another tablet. I did read somewhere that they are doing research about staying on tam for more than five years?good luck Karen xx
Hi I don’t think it’s the “likelihood” that er+ will recur between the 6/12 after dx.I think it’s just that er+ can recur years later because it is usually less aggressive where as er- or triple negative and HER2+++ are more aggressive and tend to recur within the first few years.but of course there is now Herceptin for HER2+ and triple negative tend to respond very well to chemo, er+ tend to respond very well to hormone therapy.A study that I read on the National Cancer Institute found that taking tamoxifen for 5 years continues to benefit women 15 years after treatment.Also there are other things to consider like the grade and if nodes are involved or vascular invasion present.
I took Tamoxifen for 5 years but had a recurrence 4 months after coming off it. However that was nearly 8 years ago now and have been on Arimidex ever since. I am now 49 (the big half century is coming up in May!) and perfectly fit and well. Not sure whether this info is any use to you but just wanted to say there is life after BC
Sorry, have nothing constructive to contribute, but want to keep an eye on this thread since I’m ER pos & HER2+++. I even haven’t started on Tamoxifen yet, still at chemo stage and MX to come in April, but have started on Herceptin two weeks ago.
I had been taking Tamox for 2 1/2 years when I had a recurrence aged 35. I decided to go for an oopherectomy as I didn’t want to rely on drugs to ‘switch off’ my ovaries and didn’t want to use rads for ablation then leave them in there posing another potential cancer risk (I have a strong family history though I haven’t done BRCA testing). I then switched to Arimidex which worked for around 4 1/2 years before getting another recurrence.
Where did you get the info on ER+ recurrence? I’ve never heard these stats in my 9 years of BC experiences. I hope you won’t mind my asking this, but are you sure the source is reliable? If your onc doesn’t feel you need further treatment, you really have to think long and hard about this. I totally understand your fear of recurrence and your fear of being without treatment, but suppressing your ovaries and taking AIs comes with risks of their own. Remember that 5 years of Tamox is still the ‘gold standard’ treatment and the majority of women treated this way do not go on to develop a recurrence/mets. There is no reason to believe that you won’t be one of those women. Or are your concerns based on your initial diagnosis (high grade + stage, high lymph node involvement)?
I hope this helps. Feel free to PM me if you’d like to know more. Take care, Angelalls xx
