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The right to refuse Tamoxifen

Angrylady
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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 hospital 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 hospital 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 https://www.nhs.uk/common-health-questions/nhs-services-and-treatments/do-i-have-the-right-to-refuse-treatment/ I do not consider that the NHS get adequate consent for the hormone blockers given that they clearly cause serious side effects which ruin lives. Research into better treatments needs to be carried out. The only proper 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 hormone blockers 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.

  • Offline

    Hi, I know this is a while after your post but just hoping you do see this ! 

    My situation very similar to use. I would of refused chemotherapy but luckily entered a study which has not recommended it.

    I've started tamoxifen but not sure it agrees with me ! 

    Did you have radiotherapy?  

    Thanks

  • Offline in reply to Freshair

    Hello. Yes I had have radiotherapy in 2020.

  • Offline in reply to Freshair

    Hello Freshair,

    A very warm welcome to our forum.

    I am sorry to hear that you, too, have been afflicted by breast cancer, but glad to hear that you do not need chemotherapy. Are any of your lymph nodes involved. I am sorry to hear that you don't think that Tamoxifen agrees with you. What problems are you having with it?

    I have had 2 bouts of breast cancer and have taken Tamoxifen and Letrozole. Both had side-effects, as I think all of the hormone therapies have, but they have done their job, as I am now 15 years down the line from diagnosis and doing well. 

    I am not a doctor, but I understand that most cancers are fed by Oestrogen or Progesterone and these medications counter this effect and reduce the ability of these hormones to feed the cancer, so it is worth persevering with this treatment. If Tamoxifen is giving you severe problems, talk to your care team, who may be able to help you. Although all hormones carry similar side-effects, some are more specific to one medication, as opposed to another.

    Please keep in touch and let us know how you are getting on. We are always here for you.

    Kind regards,

    Jolamine xx

  • Offline in reply to Angrylady

    Effectively I could not take Tamoxifen because it would make me too ill to work. I have a mortgage and bills to pay. I am not losing my house. I have had breast cancer x 3, original lump found and 2 x recurrence. Now I have had a flat mastectomy I feel much better and I am prioritising my career and mortgage payments. They really need to find some better treatments as not all women can afford to take hormone blockers and be ill 24/7. Please note this is just my experience and not a recommendation to anyone else.

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