Letrozole and Zoladex and Uterine fibroids / Hysterectomy

Hi, I can't help on the fibroids, but I have been taking Letrozole for 6 months now and other than a little stiffness, I have not had any side effects.  I have one Zometa, given by IV and am due another in a few weeks as I have these every 6 months.  It made me feel like I had flu for about 12 hours. Good luck with your decisions 

I think that input from an oncology gynaecologist would be good. Can the oncology team refer you for a consultation in the near future? I would also ask about switching from one treatment to the other if you decide to have the hystererctomy at a later date. 

Thank you for taking the time to reply Irishgirl16. Hearing you haven't had many side effects to Letrozole gives me a bit of reassurance. I find uncertainty has been one of the hardest things to deal with, every step of the way.

Hi GreyCats, thank you for the advice. I have been referred to the Gynaecologist, but the Oncologist and Gynaecologist seem to work separately. The Oncologist suggested I might be able to stop Zoladex if I have a hysterectomy. Not sure if I would be able to switch back to Tamoxifen in that case? I believe I can't have Tamoxifen if I lose my ovaries as Tamoxifen is not as effective then. I have been put on montly Zoladex injections fot now as their effect only lasts a month and I can easily change medication if needed, whereas if I have them every four months, their effect will last a year and I won't be able to change medication before that.

It is all new to me so I'm trying to workout how it a works before I start. The Oncologist told me I could start the injections and tablets now or after the rain if I preferred (I think I would rather deal with kne thing at the time, also I will wait unti the radiotherapy is out of the way).

I have zoladex monthly and exemestane, which is similar to letrozole. Th sudden menopause was pretty intense but it was also duing chemo for me which made it even worse. Things did start to calm down significantly once I had stopped chemo nd now symptoms are pretty manageable. You learn how to cope with the hot flushes and night sweats by doing all the thing you're supposed to do to help (chillows, fans etc)

I find aI am a bit stiff from exemestane but this wears off quickly in the morning just from walking around the house. I do have painful wrists but even those are manageable.

I have a zoledronic acid infusion every 6 months (it will be for 3 years) to help with potential bone thinning and I also do load of strength activities with my hobbies and I try to jog a bit when I can.

Everything is very manageable and the alternative of the cancer returning is far worse.

I was told the zoladex injections every 3 moths weren't approved for breast cancer as they don't know whether it keeps your hormone levels low enough for the entire duration, but that advice may have changed now as I think a few people on here get them every 3 months. I think I would stick with monthly as wouldn't want changing levels of hormones throughout the year, it's bad enough having them cut off completely!

An alternative is having ovaries removed altogether so if hysterectomy is something you may need to consider, it may be an idea to have your ovaries removed too, then you would only need the letrozole.

Thank you Beatthebreasr. Very useful advice there. I had an axillary clearance and was told I couldn't pull or push or lift weights with the arm on that side, in order to avoid lymphoedema. I am not sure what exercises I can and cannot do, but I plan on exercising as much as I can to build some strength and help support my bones. I was told I would have an initial Dexa scan and then one every three years and have been prescribed calcium and vitamin D. Didn't know about the possibility of Zoledronic Acid infusion to counteract thinning of the  bones. Thanks again for the advice.

INGR said:

I can't have Tamoxifen if I lose my ovaries as Tamoxifen is not as effective then

Check with the teams; I think it's not a question of efficacy but rather one of necessity, which would make thinking with it completely different. 

As for the teams working separately, I have a bit of a similar situation, so I ask the same questions of both teams, and if there are discrepancies I query, either in the room during a consultation, or if I only find out later, then through the nurses.

You need a clear picture of the effects and impact of each treatment path, and at the moment it seems they have not quite yet given you that. Your breast nurse may also be able to liaise with the gynae team, and really, someone on the teams should do that so that they know what the other team is saying and doing, and so that you can have someone to talk to on the teams who is fully aware of everything and able to answer all questions.