Worried about chemo and hormone therapy

[ash543]

Hello, I am 34 years old, was diagnosed with grade 2 ER+, HER2- IDC in December. Two tumours were removed during surgery of 27mm and 16mm and my lymph nodes were all negative.

Oncotype score came back as 22 so I was told I would need chemo, even though previously it was indicated to me that this was unlikely (grade 2, not as aggressive, “slow growing”).

They’ve offered me a choice of chemo of either TC (12 weeks) or EC-T (20 weeks). I’m inclined to go with the less intensive regime of TC to avoid the toxicity of EC-T and its effects on the heart, though they didn’t really explain the pros and cons. It didn’t sound like there was much evidence in favour of EC-T but was all pretty unclear.

I’m feeling really depressed about the side effects of chemo and possibility of menopause. They’ll give me zoladex to protect my ovaries during chemo but the onco suddenly mentioned that I’d continue getting zoladex injections after chemo had finished as well. In her letter on my chart it mentions hormone therapy would be ovarian suppression with letrozole. This has never been mentioned to me as a possibility! All along I’ve been told I would be receiving tamoxifen, the nurse has even provided me with leaflets about this, so this is complete news to me and was not explained at the appointment.

I’m really upset, this sounds like a much harsher type of hormone therapy. How can I have the menopause at my age? I don’t think the doctors understand how upsetting that is for me. It’s not just the issue about having children (I have frozen my eggs), it’s also about how it’s going to affect intimacy. I think sex is such an important part of life and relationships and I feel like my whole sense of identity is being taken away from me.

All the treatments are presented as good thing but they come with life altering side effects! I know I’m being irrational because I have cancer but I felt totally healthy and fit before this. Now my life has changed completely and I’m going to be on so much medication which will make me feel unwell

[mun4o]

Hi @ash543, I am really sorry to hear about your diagnosis…you are so young and I totally understand where you are coming from.

Sex is very important part of life and I honestly, can say that I miss it a lot…sorry tmi but it’s the truth…

I was 43 when diagnosed and put into the medically induced menopause straight away. I’ve been on the dreaded Letrozole for 3 years now, still 4 more years to go. And yes the side effects are horrendous I am not going to lie…but my cancer has spread to the lymph nodes so I don’t have much choice…

I think you should talk to your team again and explain your worries or even have a second opinion if you are finding it hard to accept your treatment plan, I think you should definitely seek second opinion…it’s your body at the end of the day…

Tamoxifen is also a very good option, especially for young women who haven’t gone through the menopause with very good results so I think you should explore other options.

I think in cases like yours when you are so young they are throwing everything at you just because for all oncologists the most important thing is saving your life!! They don’t really care about the side effects or what you are going through - mentally and physically…

Wishing you all the best for your treatment . Take care. x

[Nurse_BCN]

Hello ash543

Thanks for posting. It’s completely understandable that you are feeling really upset at the prospect of chemotherapy and hormone therapy. Especially as you say the treatment plan has changed without an explanation. Side effects can impact on body confidence, and sex and relationships, so you are not being irrational.

You are welcome to call us our helpline to all this through. We often find we can help people more by speaking to them on the phone The number is 0808 800 6000

As @mun4o says do speak to your treatment team. It’s important they explain the benefits and drawbacks of both EC-T and TC. They call also explain why they now feel you would benefit from Zoladex and letrozole over tamoxifen.

You might find it helpful to speak to another younger woman who has had a similar diagnosis and treatment. You can do this through our Someone Like Me service.

We also offer support tailored specifically for younger women with primary breast cancer who are aged between 20-45 years. This includes our Younger Women Together events that are run face to face and online. This support offers the opportunity to meet and share experiences with other younger women and get expert information in a confidential space. More information can be found on the links above.

Our forums can also be helpful and there is a chemotherapy monthly thread you may want to join when you start chemo.

Hopefully your treatment team or breast care nurse can go through your concerns and as I say do call our helpline if you would like to talk this through or have any further questions. The helpline team have time to listen, talk things through and signpost you to additional support and information if necessary. Your call will be confidential, and the number is free from UK landlines and all mobile networks.

The number is 0808 800 6000. If you have hearing or speech difficulties prefix our number with 18001 and the call will go through Relay UK. Our helpline has access to telephone interpreters if language translation is required.

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Best wishes

Jane

Breast Care Nurse

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