No-one really wants to know .

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Guess I'm just feeling sorry for myself,  I have stage 4 breast cancer with mets in my lungs but I've refused treatment for my own reasons .

I have however found out that no-one really cares what you're going through if your not undergoing treatment for cancer which I personally think is wrong , just because I'm not on cancer treatment doesn't mean my cancer has gone away, because it hasn't its still there, still growing and doing whatever the hell it pleases.

The hospice nursers are a different matter.

I have a new oncologist and met her once, it didn't go well and she said I needed a CT scan because I was coughing but didn't want to get me a CT because I'm not on treatment so there wasn't any point having a CT , yet a few days later I received an appointment for a CT, I did at first want to return down the CT because like she said what's the point if I'm not on treatment but then I decided that despite not being on treatment I still deserve to know what's going on, so I went and should receive the results this month , although I know the oncologist is going to insist I have treatment. 

It annoys me because she should be respecting my choices and supporting me which she isn't. 

Anyway like I said this is just a feeling sorry for myself because I shouldn't have to be undergoing treatment to ger the respect that everyone on treatment gets .

  • Hi  

    I'm sorry to read that you feel that no one cares about you because you have refused treatment.

    You say that

    I know the oncologist is going to insist I have treatment. 

    but they can't give you treatment if you don't sign a consent form so you always have a choice.

    Wishing you all the best

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     "Never regret a day in your life, good days give you happiness, bad days give you experience"

  • No I realise they can't force treatment. 

    I actually went to see the oncologist today who asked if I'd changed my mind about having treatment and I told her no , she tried the horror story and how painful death will be if you die because your struggling to breath , I told her I'm aware and still saying no so she said all she can do at that point is say goodbye and I'm struck off the oncologist list 

  • Hi Nala,

    If you have made the decision to refuse treatment, that decision should be respected.

    Oncologists treat cancer, so I don't think an Oncologist is what you need now. A palliative care team would be a better choice, to make you as comfortable and pain free as possible.

    You might be able to find some help here: https://www.nhs.uk/service-search/other-services/Palliative-care/LocationSearch/1822

    HTH

  • Hi  thanks for your message. 

    The BCN is referring me to the hospice for help with breathing etc and has told me I have 6-12 months to live 

  • I am sorry to hear of your situation and am sure you have good reason for the decisions you are making. Can I ask a couple of questions? 

    How long ago was your primary breast cancer?

    What ‘type’ if that’s the word did you have by that I mean was it hormone receptive?

    How did you discover you have lung mets? 
    What symptoms drove the investigation that led to the diagnosis of lung mets?

    How long have you had the cough did that precede the investigation?

    The reason I ask is my wife had hormone receptive breast cancer 8 years ago and in Nov last womb cancer resulting in full hysterectomy. Told no more treatment required. At the same time developed an in going cough, worse first thing with occasional phlegm and has low level cough/throat clearing during the day.

    No cough at all when sleeping.

    We reported this to the GP who prescribed antibiotics which did nothing, the a chest X-ray which showed low down infection but nothing ‘sinister’ her words.

    GP  is prepared to run another X-ray in 3 weeks if things don’t improve which they aren’t at the moment. 
    I am very worried she had a return of breast cancer in the lung so am trying to seek any info I can .

    thanks

  • Hi, thank you for your message. 

    I'm sorry to hear of what you're all going through, Cancer is a B!tch that's for sure :-( 

    I'm not sure my information will be of any help to you but I will certainly share my story with you .

    I was diagnosed with a 26mm grade 3 invasive ductal carcinoma of the left breast in August 2021, which was treated by a wide local excision and axillary clearance  ER positive, PR positive, HER2 negative 13/18 lymph nodes effected with I additional node containing micrometastasis , a staging scan in September 2021 showed a 3mm right middle lobe nodule (in the lung)  which they said was likely to be benign so I had 3 mi that CT scans so they could see what it was doing as the position (where the nodule was) wasn't easily accessible,  I started with a cough and slight wheezing in the May of 2022 and in the July 2022 they told me I now had 7 nodules and it was secondary breast cancer,  they said I'd be starting to cough, wheeze and be breathless as the tumour started to grow,  I told them I already had and they started me on hormone blockers which did stop the cough but I had an allergic reaction to the medication so I stopped taking it , as the months went on the cough got worse as did the wheezing and breathlessness and now there is some days I'm light headed and part of the lung as now collapsed. 

    Basically the coughing and wheezing were what alerted me to something being wrong , I didn't cough and I didn't wheeze, yes sometimes I'd get out of breath but that was due to be not only being overweight but unfit too, so another CT scan was performed and that's what lead to the current diagnosis. 

    My advice is to treat anything no matter how small as a possibility to being cancer especially if there is already cancer in the body , the oncologist are usually good with this and like to keep an eye on any new symptoms or progression,  if you haven't already mentioned these concerns to the nurse/doctor I'd do it ASAP .

    I'm sorry if this information wasn't Quat you was expecting or hoping for but I wish you good luck 

  • Thanks for your reply.

    as I said we have raised it with the GP but so far only sanctioned X-rays of the lungs 

    when you say they started you on hormone blockers what where they?

    my wife has been on tamoxifen for eight years but had to stop when she had the womb cancer diagnosis.

  • I was put on Letrozole because I'd already gone through the menopause,  tamoxifen apparently is for those that have yet to undergo the menopause. 

    An Xray is good but a CT scan is more in-depth , does she not have a oncologist? They will be the best to speak to.

    I was in hospital last year and had a Xray , the oncologist said it was good enough to be able to see there was no progression but it's not as good as a CT

  • Hi, I am encouraged that your oncologist view is that whilst not as detailed an X-ray is useful.

    I guess a lot would depend on the size of any tumours. 

    I am so sensitive to her health that I feel I am hyper critical to any unusual symptoms, hence my   Focus on her cough, and I fear I may be so early in thinking I even believe it’s possible that no medical image via X-ray can detect it yet, hence my comment about size.

    Al

  • Hi,

    I can understand your concern,  but the biggest majority of cases can be picked up by medical things, the first mass on my lungs was only tiny at 3mm but it was seen on a CT they just didn't know what it was and thought it was benign until more masses appeared then they realised it wasn't. 

    Yes a CT is definitely more detailed than an Xray and maybe your GP doesn't feel like there is anything to worry about at this stage, not helpful I know but I do feel a CT is needed and I can't understand why they aren't pushing for one especially as your wife as already had cancer but like I said maybe there is nothing to be concerned about,  its confusing and a stressing time .

    It's good that she as you to worry abiut her