Never ending…. Please help

Hi…. Looking for some advice please…. It’s a long story….ill try to keep it succinct.

Diagnosed at 39…. Er+, HER2+, 63mm overall size 2 tumours linked with DCIS…

Lymph nodes clear, 6 cycles chemo, bilateral mastectomies with reconstruction… 12 month Herceptin injections, then 12 months of Neratinib, Zoladex injections and Letrozole - was not allowed to take Tamoxifen due to having a blood clot after Picc line fitted…

It’s been 5 years now…. Had last Zoladex injection in March… blood tests since to monitor FSH an LH levels….

August this year I got my period :persevere:

Oncologist says I cannot go back to having Zoladex after 5 years, stop the Letrozole too

My choices are…. Stay off everything - go back to pre-menopausal and risk ER+ cancer becoming secondary…

Possibly take Tamoxifen - haematology dept being consulted as to how much of a risk of clot/stroke/heart attack…

Bilateral oophorectomy….

I am so tired of all of this…. I’m so fed up of pain, surgeries etc

Please can someone give me some advice what to do? I’m so low at the moment I just don’t think I can handle much more…

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Hi,
I remember when my period returned (at 47!) after Zoladex. My oestrogen levels were all over the place and an oophorectomy was discussed. That first bc ( had another dx 17 yrs later, ipsilateral) was Grade 1 so I stayed on tamoxifen and took a chance… If you really can’t take tam ( clot would suggest not) maybe opt for the oophorectomy as there’s no other way to keep the oestrogen at bay! Have you asked your oncologist for Predict? Did you have an OncoDX test? There are a lot of factors. You’re young in the scheme of things though and probably a way off from menopause so the doctors will want to act further. There’s QoL, of course, too. Maybe you could have a pause of some months with their approval while you consider next steps and see how you feel restored to normal hormonal levels. You deserve a reprieve! Sending my best wishes to you M x

Thanks for this x I haven’t had Onco test or Predict but I will definitely look into it x thanks xx

1 Like

Hi t21,

Thank you for posting.

It’s understandable that you have lots of questions about your options for reducing the risk of breast cancer coming back (recurrence) as your periods have returned after stopping zoladex. Some people do opt to have their ovaries removed (oophorectomy) for ovarian suppression to reduce the risk of their cancer returning.

You mention that tamoxifen may not be an option for you, as you have had a previous blood clot. Its good to hear that your treatment team are speaking to the haematology team to clarify if tamoxifen may be another option for you.

I wonder if you have a breast care nurse you can talk to about the options you have been given. Making decisions about treatments can feel overwhelming, and the risks and benefits of each treatment will vary based on your individual situation. Your breast care nurse or treatment team can go through the risks and benefits of each option with you to help you decide which is right for you. You can also talk to them about having some time to make the decision, as @Margarita says, if this would be helpful for you.

You mention feeling fed up and low. Going through breast cancer diagnosis and treatment can be a really difficult time emotionally and you’re not alone in feeling this way. You can talk to your breast care nurse, treatment team or GP about what support is available to you locally. Some people find talking therapies, such as counselling can be helpful.

Talking to someone who has had a similar experience can often be helpful. Our Someone Like Me service can match you with a trained volunteer who’s had a similar experience to you. You can be in touch with your volunteer by phone or email and they can share their personal experiences to answer your questions, offer support or simply listen to how you are feeling.

We also offer a range of free supportive services for anyone who has had a diagnosis of breast cancer which you may be interested in. They include face to face and online courses and events. For more details about all of these services, please see the information in the link.

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