Scared to start hormone therapy

Going through breast cancer treatment Hormone therapy
1

Hi. I’m new here. This is my first post. Sorry it’s a long one…

I have suffered from severe depression and anxiety for many years. My cancer diagnosis was devastating - it came 5 months after my Dad died from prostrate cancer that had spread to his bones.

I was diagnosed with hormone positive stage 2 breast cancer 8 months ago after a routine mammogram. I had a lumpectomy without clear margins so that needed reoperating on and it had spread to my lymph nodes so I had a axillary node clearance. Next was 4 x EC chemo over 12 weeks followed by 12 x weekly Taxol. Total 6 months of chemo which I completed 3 weeks ago. I’m now having radiotherapy x 10 sessions. 

I am seeing my oncologist in 2 weeks to discuss hormone therapy that he wants me to take  I don’t know yet which one and another oncologist I saw suggested I may also have to take abemaciclib.

The side effects of both look horrible and I’m more petrified of this than even chemo.  I don’t think I can take this on. My body can’t take any more.  My mind can’t take any more.

I fully appreciate doing everything I can to increase my chance of being cancer free is imperative.  But also I’ve been clinging on to a speeding cancer juggernaut for 8 months that has taken over my life and nothing has been in my control for all this time.  I’ve done everything I can to fight it.  I’ve been very strong throughout but it has been very hard for me to try to manage depression and anxiety as well as cancer!  I now need some sort of control back in my life to heal this trauma in my mind and get my body back from operations that have changed my appearance and toxic chemo drugs that have ravaged my body. I’m still dealing with the fall out. Thankfully because of using a cold cap I only lost half my hair but it’s still falling out. My eyebrows are gone. My eyelashes are gone and my eyes are gritty and sore. I have nosebleeds. I have mouth ulcers. My bones ache. I have pins and needles and numbness. My lungs ache. I have crippling fatigue. I’ve put on an enormous amount of weight. None of my clothes fit me. I need to lose at least 3 Stone. My self esteem and confidence are rock bottom.

So what do I do?  Does anyone have any experience on what the statistics are of cancer returning if I don’t go on hormone therapy? Or if it’s a thing to delay starting it for a few months whilst I start exercising again and lose some weight and feel normal again for a while?  

thank you  

 

2

Hi nikki

Congratulations for getting through this far. I have to say that was a gruelling chemo schedule they put you through. I had 3 ECs, which had me hospitalised with sepsis, then 9 paclitaxels with a break when I really couldn’t take much more and had had a one-driver car crash that wrote off 4 cars and fractured my sternum! So you, by my standards, have done remarkably well.

I know no one else can tell you how to feel (my whole life has been dictated by anxiety, depression, phobias and panic disorder so I do understand) but really you need a little time to breathe now. You’re demoralised by the effects of chemo (oh the joy when I first spotted those stubby rows of eyelashes regrowing). Things will pick up pace quite soon now/ Radiotherapy may make you tired or totally drain you so this isn’t the best time to make decisions. As far as I remember, I was given a break after radiotherapy before starting on anastrozole.

The leaflets are obliged to inform you of all possible side effects. Me, I joke that I can get a side effect just walking past a pharmacy but the fact is, it’s just information. If you go back over your EC info and your paclitaxel info, how many of the cited SEs did you get? The same applies to hormone therapy. To be honest, for most women, it’s no big thing. A tablet a day and they move on from life-with-cancer. But these are the unheard ones - the ones we hear about are usually those who struggle for some reason or another.

Yes, I had some side effects (and I found getting the right brand with the fewest SEs worked best) but it felt like a small price to pay for peace of mind. Given your history of anxiety, I can almost guarantee that, after the elation of no more treatment, that nagging doubt that it’s come back will haunt you. So you have to weigh up the pros and cons. For some, HT is the make or break therapy. Yes, 5/10 years of joint pain or aching muscles sounds horrendous but you don’t know the severity until you have tried it. It’s nothing like as awful as chemo (I can’t say for radiotherapy as I was gifted an easy ride there!).

Make sure you are given time to discuss your doubts and fears with your oncologist or breast care nurse. You really won’t know how it will affect you till you try it and you may be one of the many lucky ones who are barely affected. The oncologist I saw wanted me out of the room before she could finish saying “all clear” so she’s not one I would approach again!! My hospital took my anxiety very seriously and supported me all the way (with that one exception) so you must make sure you are heard. Ask if you can have a treatment break while you make what is, for you, a huge decision.

Your energy will begin to return once radiotherapy is finished, in imperceptible steps. With that, your spirits may rise - it will be summer after all. Your life will be different and you will still have a lot to process - that diagnosis and the treatments, no matter how ‘strong’ you felt going through, were traumatic and have to be processed. But there is a new life awaiting you, cancer-free, and you want to give it every chance to stay that way. When your head is clear, then is the right time to make such a big decision.

Wishing you all the very best

Jan x

3

Breast cancer treatment is very much tailored to each woman based on the pathology and chemistry of tumours so I think you need to talk to your oncologist about your worries and don’t prejudge how you will get on with hormone therapy. You may find you deal with it a lot better than chemo so give it a chance. I know I don’t like some of the side effects but at least I have so far not given it up. The usual period of time to take it is 5 to 10 years for the greatest benefit, that might be a worry to some.  There is a computer programme called Predict which you can feed information into on your tumour size, and other details on oestrogen and hormone receptors, or you could ask your oncologist to do this. This looks at how much difference taking various therapies are in addition to surgery. I think it’s scary and this may make you feel worse.

I decided to give the treatment a fair chance of 6 months to a year with reviews. But you must make up your own mind. You can change it at any time though…

Seagulls