Sister's Treatment concerns.

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Hi, I'm new here. 

My sister has just been diagnosed with stage 1, grade 3, invasive ductal carcinoma. Er +. She has Cerebral Palsy but is otherwise healthy. I am concerned that she is not being offered the same treatment plan as I would at her age (44) with this type and grade of cancer.

I raised this with the cancer care nurse who has got us a new longer appointment to ask our questions. I am concerned thst my sister doesn't really believe that my concerns are valid, just that I am being over protective.

She was recomended Tamoxifen only. I am really anxious that everything I have come across and the Nice guidelines say to recommend surgery and that my sister now doesn't understand any risks of not having surgery.

I'm just very anxious right now. I don't know if there is anyone with any experience of the MDT taking things into account but then not explaining. Or anyone with experience of breast cancer with an underlying disability.

  • Hi YorkieSis welcome to the forum. So are you thinking that  as your sister has a disability she is not being given the same choices as someone who does not have a disability?  Your sister is covered by the Disability Discrimination Act.

    I think that the Cancer Nurse has done exactly the right thing in getting a longer appointment and I wonder if it might be an idea to write your questions down so that you remember to ask them . Its a difficult one I think but your sister is very lucky to have you fighting her corner and making sure that she gets the best treatment possible. xxx

    gail

     
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  • Thank you, and thank you for your reply. 

    That's what I think I'm afraid.

    To be more specific what I think is that they have taken her disability into account on paper and made assumptions on what she could cope with but they did so without taking into account her as an individual, her history with anesthetic, her care package, ect

    I think, and everything I have found points to, that if it were me they would be recommending surgery. They didn't, and they didn't tell her that it had been considered but they weren't because of x, y, or z.

    If they had she would have had the chance to decide if it felt correct for her personally. Instead they didn't mention it and made it seem like the tablet only was normal treatment for her age and grade.

    I believe that led her to believe that it was 'simpler' than it is. It also means that she thinks I am being over protective and doesn't neccisarily believe that it is as serious as I think it is. 

    I don't want to be the person who bursts her bubble. It doesn't feel fair to. 

    I hope that the longer appointment  means we will have a more in depth conversation and maybe go back to the MDT.

    I have a list of questions to ask once she has asked hers if they haven't then been answered.

    Whatever she decides about her treatment I will support but she needs all of the information to be able to make an informed choice.

    Thank you re the act, I will have to re familiarise myself with it.

    I really appreciate you saying that about me fighting for her,  all I want is for

    a) her to be treated the same as I would be and

    b) that she be given all of the information.

    If she isn't being treated the same for a perceived medical reason related to her disability she has a right to know and have input.

    No one should have to fight to have those two things, while she does I will fight for and with her.

  • Hi, I read this and your sister has exactly the same results as me.

    I don't have a physical  disability.

    I didn't see anywhere what the size of the lump is, your sister has.

    Mine was 2 cm.

    My plan was lumpsectomy, hormone Therapy, chemo & radiotherapy.

    I had surgery, now I'm having chemotherapy followed by radiotherapy & on hormone therapy.

    Chemo does affect everyone different, it can be brutal on the body , the side effects are not pleasant from what I experienced, from vomiting, constipation,not being able to move out of bed.

    Radiotherapy , all I know is that I have to  hold my arm up for the rays from the machine, then can suffer burns.

    Surgery, was ok tho it was the excersise that were hard to do, depending on lympnode removal you can suffer lymphoma.

    I hope this helps give you information about what the treatment are about , & it's concerning that she is only getting hormone therapy.

    Definitely question it,  I hope it works out ok.x

  • Thank you for the reply.

    I can't remember, I know that there are 2 and they are 2cm apart, one big one little. I will update with sizes once I get home to look at the documents. 

    We don't have the next appointment yet. 

    I just had a gp chat and I am being referred to the family history clinic. 

    I hope that you are feeling OK and taking time to rest and recharge. 

    Sending good wishes for you. 

  • Thanks, I hope that your sister gets the treatment she needs. Xx

  • It doesn't sound quite right and your sister would be covered under care of vulnerable adults amongst other things. It seems unusual not to be removing the lump/s. It is good to hear you advocating carefully for your sister and I hope the longer appointment will help answer all your questions. Write them down as so hard to remember them in the moment.

  • Thank you.

    We had the longer meeting. They admitted that if it were me they would be recommending surgery. They did a risk. Assessment with an anastesiologist and agreed that she can have surgery but they still recommend the Tamoxifen.

    My sister has decided against surgery unless all other treatment fails but at least she now has the information, and the choice.