I just wanted to share my experiences, in case this helps anyone. Jan 2020 – aged 42 I was diagnosed with grade 1 breast cancer, one small lump, had a lumpectomy and LICAP flap reconstruction, and radiotherapy. I refused to take the hormone blocker Tamoxifen as both the Surgery department and Oncology did not take my concerns about the side effects seriously. I was bullied and shouted at by a trainee Oncologist on a phone call about it. Then I saw a woman from Oncology who said no-one takes it, or people try it and have serious side effects and then stop taking it.
June 2023 (aged 46) – I found another lump. I have had a left side mastectomy with implant reconstruction, full lymph node removal and my full nipple removed (3 small grade 1s and a minor stage 2 on size). 1 out of 6 lymph nodes had cancer in them. No evidence of spread beyond this so only a local recurrence.
I have had another very bad experience with the NHS this time. I am not having any further treatment. Chemo came out as 1.6% benefit on the Predict tool and hormone blockers as 1% benefit. I did not approve having chemo as it is not a guarantee and seemed excessive given that the surgery is 90% benefit. I tried one of the 20mg Tamoxifen and was very very ill for a week – I have bad eczema and my skin was burning like acid had been poured over me. I told Oncology about this and they were happy for me not to take it and support my decision not to have further treatment.
I still felt very bullied on more than one occasion by the Surgery department about the hormone blockers again this time so I wanted to let people know what their rights are. You have the right to refuse any treatment you do not consider acceptable – see Do I have the right to refuse treatment? - NHS I do not consider that the NHS get adequate consent for this treatment given that they clearly cause serious side effects which ruin lives. Research into better treatments needs to be carried out. The more effective prevention is a mastectomy.
No proper research has been done into the side effects of the hormone blockers and whether they really are worth taking as a result. Remember people have lives and careers, bills to pay etc. I do not regret taking it at all even after having a recurrence because they are not a guarantee, and I will not be bullied into a course of action. I am looking forward to returning to my career in the new year.
I would like to see some new research carried out on the hormone blockers:
- How many people take them and have no side effects.
- How many people have minor tolerable side effects which don’t affect their quality of life and mental health.
- How many have serious side effects which ruin their quality of life and mental health
- How many people have a recurrence of breast cancer while taking the hormone blocker tablets.
- Were any controls done during previous studies to confirm that the tablets really did make the difference as opposed to the person going into menopause naturally.
- Were hormone levels monitored regularly during previous studies to confirm that the tablets were making a difference.
In this day and age , an educated person I would expect better levels of information and statistics to be readily available from a recent study, and for research to be carried out every 3 to 5 years on this.
I really feel that better treatments for breast cancer urgently need to be looked at. I did see the treatments delightfully referred to as ‘cut, poison, burn’ (surgery, chemo / tablets), radiotherapy) in one article.
If anyone wants to chat let me know.