Hormonal therapy advice/support please.

Going through breast cancer treatment Hormone therapy
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Hi everyone, I’m new to this forum.  I was diagnosed in April of this year, G2 IDC plus DCIS. 1 out of 2 lymph nodes and ER 8 PGR 8 positive.

I have undergone a lumpectomy and yesterday completed 15 rounds of RT. Another courage’s hurdle completed. Hooray!

I’ve avoided going onto the forum for fear of negative stories.  I had a terrible experience in hospital in my twenties having anaphylactic allergic reaction to medication and have since had other more milder responses to medication and some foods.  The experience however left me ‘significantly traumatised’, and I have subsequently developed years of practice of ‘mind over matter’ whenever getting ill, due to my fear of medication and hospitals, but of course with cancer and the best outcome this is not one of those situations and medication is needed.

Yesterday marked hospital appoint number 61 from date of my first mammogram so I feel I am conquering some of my fears but the next phase in my treatment is the endocrine treatment and it is the medication that is scaring me beyond measure, more so that the surgery did. I am due to start with Zoladex injections -ovarian function suppression 3 monthly with tamoxifen and then switched to letrozole and consider adjuvant bisphosphonate therapy if ovarian function suppression is tolerated-zoledronic acid 4 mg 6 monthly for 3 years.

I want to be objective and informed and I wondered if anyone might be able to please offer some advice on what to expect and what their experience has been. I have found this process exceptionally difficult from a physical/emotional and psychological standpoint as I feel I am not just facing cancer but also my fear of claustrophobia during RT, surrendering control of my life to specialists, and my fear of anything medicinal related.  My nervous system feels frazzled and I have had a number of really low days.

When I read about the side effects of Zoladex and Tamoxifen I just want to run a mile… however I am realistic and recognise not everyone will get every side effect.  I would honestly welcome any advice on what to ask my oncologist, when is best to start, as I only just finished radiotherapy and hoped to get a few weeks reprieve, what I can do to help mitigate some of the side effects, what alternative brands are available and generally just understand what others experience on these medications have been.

I also wondered if anyone might be able to recommend any sites regarding nutrition and how to best change what I eat moving forwards. Thank you for any help anyone can offer.

VBW

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Hi @NicsB as someone who was 13 years past menopause when I got my diagnosis last year, I can’t claim to have the kind of experience needed to counsel you in your complex circumstances.  What I can say though is, I too had an IDC with DCIS ER+ 8/8 PR+ 6/8, had a lumpectomy, radiotherapy and have been on Letrozole for 9 months with a short break in the Spring to sort something out, and the few side effects I have to deal with, don’t seem to be the most common.  So, whilst it is undeniable that the endocrine treatment can have side effects, there is no telling whether you will get any (many women do not) or, if you do, what they might be or how severe.  So the only way to find out is to start taking them in good faith and see.  Whilst it is human nature to try to find out what to expect, I think it’s best not to read too many stories on here as they will mainly give you one particular perspective which is unhelpful before you start your own relationship with the, quite honestly, important drugs.  You might want to talk through your Oncotype score with the oncologist and perhaps do the Predict test with him/her.  These are just indicators and not in any way definitive but can help you to understand the potential efficacy of the endocrine treatment.  I’m sure there will be far more useful responses along shortly but I would also urge you to chat with one of the Breast Cancer Now nurses on 0808 800 6000 as I guarantee you will feel better and more reassured after doing so.  I hope this isn’t patronising, it’s not mean to be, but you’ve been phenomenally courageous so far and, as some one whose default status is barely controlled panic myself, I admire your conscious decision to control your response to the challenges you’ve faced.  I wish you success at every stage as you move towards complete recovery. 

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Hi Nics,

I really feel for you. We are basically on the same treatment plan. I was absolutely dreading starting hormone therapy and cried every time I thought about it.  

I had lots going on when I was due to start Zoladex and Tamoxifen (on top of the cancer!) and my oncologist decided to start me off just with the Tamoxifen for six weeks so I didn’t feel overwhelmed, and also so that if I was worried about side effects I would know what was causing what. Perhaps you could ask your oncologist if they would be ok with a gentle approach like this. 

 
To my complete surprise, after six weeks I didn’t feel any side effects from the Tamoxifen, in fact I felt really good. I exercise a little most days which I think helps. It’s still early days (9 weeks) but so far so good. 

I had my first zoladex nearly a month ago (I’m having monthly injections) and after a week I felt pretty flat and anxious but I then got my period and so it could have been pms or many other things. I’ve not felt great this week but today I can tell I’m coming down with something. I think what I’m trying to say is that this could all reasonably be ‘life stuff’ rather than side effects. It’s probably too soon to be feeling the full whack of it. I can keep you posted if you like? 

My oncologist also said that if I can’t tolerate the zoladex, I can go back to just Tamoxifen. I was really delighted to hear that and surprised as one of my oncotype scores was higher than expected. I owe it to myself to at least give the zoladex a go and would also switch from Tamoxifen to an AI. This combination is the optimum treatment for me so it’s worth a shot. 

In short, for me, the fear is always worse than the reality and I think even if I was struggling with side effects/will in the future - they can’t be as bad as the horror show I had created in my anxious brain!

Nutrition wise, I’m not following anything myself but have been recommended The Urban Kitchen 

theurbankitchen.co.uk/courses

I did make one of Dani Binnington’s recipes - if she’s not on your radar, she’s a breast cancer survivor and had to adapt to surgically onset menopause at a young age. 

www.healthywholeme.com

I’ve read up a lot about what can be done to mitigate side effects and wanted to buy everything and start taking supplements immediately. My wise oncologist suggested I wait until I was actually having side effects and if I have them to start the supplements/buy the cooling pillow etc. She said otherwise ‘you won’t know whether you’re coming or going!’. I thought this was good advice and meant that I wasn’t taking anything unnecessarily or wasting money. 

I found Dani Binnington’s podcast had tons of tips for managing SEs but it was making me pointlessly anxious and I’ll revisit if and when I need to. 

Sending a big hug and solidarity. x 

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Hi,

I was 45 and definitely premenopausal when I was first diagnosed with IDC ER+ 8 PR+ 8. I had no involved nodes and Grade 1 but I was still advised to have Zoladex injections ( for 2 years) and tamoxifen (for 5 years) This was 2005.

Abrupt cessation of ovarian function is bound to have side effects. You might be like me and have flushes and night sweats.  A chillow and cooling mattress topper may help you if that’s the case and I really cherished my cooling water spray ( Vichy)! I found that my hair went very dry and it’s worth buying a more expensive pack and maybe start using it when the injections start. My libido vanished which was distressing and if you aren’t allowed to have oestrogen cream, use a good vaginal moisturiser. I used Emla cream before the jab ( never looked at the needle!) and they were painless.

My advice would be to join a local support group or find a Like Me person. Breast Cancer Now can advise. I had a telephone friend of a similar age with the same diagnosis and it was enormously helpful. I read quite a few books too. Liz O’Riordan’s recent book might be helpful as she’s an ex breast cancer surgeon in her 40s.

I stopped the injections after 2 years and five months later my periods returned despite ongoing tamoxifen! I was very pleased and had a few years before the menopause proper! 

You’re bound to feel apprehensive but you’ll get through it. I would not pretend it’s easy but it’s time limited for primary cancer and a very effective treatment.  Good luck xx

PS Re diet. In 2005 Jane Somebody’s book Your Life in Your Hands was out in which she linked dairy intake with bc and recurrence.  It scared me and I gave up all dairy for months. Idk if it did anything but I lost a lot of weight! Exercise is probably more important as long as you generally eat healthily.

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@Tigress thank you ? so much for your kind and informative response. I loved your comment to start taking the next leg of this journey in good faith and see how I get along.  It is so easy to become overwhelmed and bombarded with information so I value your encouraging and pragmatic advice. I have made an appointment with my oncologist to discuss my Oncotype score to help me to understand the efficacy of the endocrine treatment and how soon after the Zoladex injection I am likely to start Tamoxifen.  It all feels like a bit of a whirlwind but I wish to be as best informed as possible. I too will call one of the breast care nurses as I need to discuss what creams I can use since completing radiotherapy as I have had a reaction to Aveeno and still only using Aloe Vera.  Thank you again for your message and I too wish you great health.

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@Lulu41 Lulu

Thank you for taking the time to reply to me.  It ’s comforting to meet someone on a similar journey and similar plan, albeit it be a journey/club one never hoped to have to join. 

I am so pleased that you have been managing the Tamoxifen and the Zoladex so far and long may it last that you don’t get side effects.  I am so anxious taking medication but I know it is what I need and it ’s comforting to know there may be alternative options like starting one before the other or possibly being able to stop and try something else if one of them is not tolerated.  At present if feels like I have had to relinquish all control of my health and body to professionals, who clearly know what they are doing however it’s difficult to surrender to this and to have total trust and I wish to have some sort of control about the decisions and what is best for me.

I have scheduled an appointment with my oncologist to discuss my options and to understand my Oncotype score and to consider perhaps a more gentle approach.  Please do keep me posted re the Zoladex injections and how you are getting on.  I have been told I will have 1 injection every three months.  I am not sure why some people have it monthly and others every 3 months.

Thank you for the links to the The Urban Kitchen and Healthy Whole Me.  I really want to focus on getting physically strong and nutritionally healthier and it will be useful to find out what supplements I should consider and what can be done to mitigate side effects should I get them when starting on the medication.

I wish you a lovely weekend and tank you again for your help.

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@Margarita thank you ? for your reply.

Some really practical and very useful advice.  I wasn’t even aware there was an option to find a ’Like Me person’ and I will most certainly look to join this as well as to talk to one of the breast care nurses.  I hadn’t considered changes to my skin or hair and its good to know there are options to help with this.  I am already premenopausal and have had some symptoms for 2-3 years now so I hope that being on the medication will just be an extension of this and nothing to severe, but as you say it is limited for primary cancer and a very effective treatment so I just need to start in good faith and take it as it comes.  I am so grateful for options.  Thank you for the tips on the chillow and cooling mattress topper, Vichy spray, Elma cream and Liz O’Riordan’s book.  I am going to take a look at those this weekend.  I am due to have my first injection in two weeks and not yet sure when I may start the Tamoxifen but it will be good to have some options under my sleeve to mitigate any SE.

Thank you again for taking the time to respond it is comforting to know there are other people out there like me in this situation and the support is so valuable.