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Radiography.

AnneC
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I'm really sorry and apologise in advance as many may think I'm being really selfish and I fully understand that.  I was recently diagnosed with early stage invasive ductal carcinoma. Margins and lymph nodes were clear.  I'm due to start radiotherapy soon.  I'm in hospital following yet more major surgery, totally unrelated and benign. To be honest the benign condition has hugely disrupted/ruined parts of my life and all the constant micromanaging this and the pain it causes has got to the point where I'm really not coping or wanting to have to any more.  I spoke with my family about refusing radiotherapy which needless to say went down like a lead balloon.  Is this a decision anyone else has considered with a similar stage cancer diagnosis and what decided it for them? Apologies, I don't mean to upset anyone.

 

  • Hello AnneC

    I'm so sorry to hear that following your recent breast surgery you're now dealing with another health problem that is really impacting your quality of life at the moment. It's perfectly understandable that you may be questioning the necessity of radiotherapy and what further impact it may have on your other health condition. 

    I know that we have had members previously who have decided to not go ahead with various aspects of their suggested treatment programme and hopefully some of them will share their stories with you. 

    In the meantime, I'd really encourage you to talk to your breast care nurse and/or oncologist about your concerns and questions. They will be best placed to talk through your specific circumstances and give you all the information that you need from a clinical perspective to make this decision. 

    If you want to chat with our team of nurses as well for some advice and support you're welcome to call them on 0808 800 4040, Monday to Friday 9 am to 5 pm.

    Whatever decision you make, I do hope that things settle and improve for you soon. 

    Best wishes, 
    Jenn
    Cancer Chat moderator 

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    Hi Anne. There's no need to apologise to anyone. You are perfectly entitled to your own opinions and thoughts. Being ill with something else with cancer added on must be a massive burden. 
     

    I speak as someone who was against going with the radiotherapy initially. Knowing it has side affects etc. I talked it all through with the oncologist/my family and friends. I came out on the side of caution so went with the treatment. I was lucky I guess as I didn't get a sore breast from the treatment nor even got very tired afterwards. That's probably due to good luck though. 
    With hindsight I feel it was the best way forward for me. I know I have taken every treatment/precaution possible and in many ways that has helped me psychologically now that I am nearly 3 years on from it. It's a very big decision as I am sure you are aware. I didn't have other obstacles in my way. It wasn't so complicated for me. 
     

    All I can say is radiotherapy is there for cancer patients because it's effective. It's not a guarantee but it is a life jacket in this precarious thing called cancer. 
     

    I wish you well. Kebbs x 

  • Offline in reply to kebb

    Thank you for replying to me.  I know that you made the sensible choice and that's probably what I'll decide on too but still feeling I'm being forced into it to avoid hurting others rather than because I feel it's what I want to do.  I should perhaps explain a bit better in that I'm not what's classed as an unwell, unhealthy person so that's not really my reason for not wanting treatment.  Instead I developed an uncommon, severe form of a benign condition in my late 30s almost 20 years ago.  I went from being really active, working and having a full life to virtually overnight, constant severe debilitating pain, housebound, having to be medically retired from my nursing job, complete loss of any social network and a really stressful home life.  It took years to get a diagnosis by which time it was too late for me to have anything but major surgery resulting in a complex type of urostomy which hasn't always worked as well as it should and by then I already had extensive nerve damage causing chronic pain.  Up until a couple of years ago I've managed to get my life under control again by basically keeping myself so stupidly active in an attempt to drown out the pain.  Totally exhausting myself on a daily basis by doing more and more endurance exercise to be even worth bothering going to bed at night to try to feel as independent and normal as I can.  Unfortunately things all took a bit of a nosedive again a couple of years ago in relation to all of this.  Care has been really difficult as the original surgery was do complex.  That along with worsening pain has meant that I'm physically unable to sit down, sleep became a complete non event again last year and I'm now back in hospital as an emergency following complications of the surgery I had a few weeks ago to change the type of urostomy I have, remove my bladder and abdominal adhesions.  I know I'll recover from the surgery but even prior to the breast cancer diagnosis was spending too much time dwelling on how I'm going to continue on like this and to be honest if I really want to.  This sounds so self pitying but I've always been a really independent person which to be honest seriously backfired on me years ago because although my husband knows I struggle he tends to have the, well if you're OK to go a walk I don't know why housework is an issue attitude.  I've basically been going about for far too many years with this fake persona to get me through each day and to avoid upsetting my daughters or husband.  I have tried discussing it with him but he finds it to stressful or choses to ignore it.  If the choice was mine alone I'm at the point where I've had enough but that's not the case and I know I'm going to have to have the treatment because it's what's expected of me.q

     

     

  • Offline in reply to AnneC

    Hi Anne, please don't appologise, everyones cancer journey is totally unique to them even with excatly the same diagnosis as someone else other factors affetc how your journey moves forward. I have just posted on the newly diagnosed with a bit of my background history but forgot to add that aside from the things I talked about I also have Ehlers-Danlos syndrome, i too had to medically retire (nursery nurse) due to the issues from the EDS. I think that you need to chat with your assigned cancer nusre and oncologist about your concerns and perhaps ask if there are other routes of treatment. I don't know much about breat cancer but when my sister had it she had the surgery, full mastectomy and reconstruction, no radiotherapy and is now had her 5th year cancer free. You are not being selfish, you have had enough of what you are dealing with medically, your body is tired and then another thing gets loaded on top of the pile. I totally get that. When my oncologist called last week I had a long list of questions ready to ask her and she was lovely about answering them , also gave me the mobile number for my assigned cancer nurse. So I think at the moment perhaps you allow yourself to get through this current medical situation, think about the questions you want to ask your oncologist/ cancer nurse and weigh up the pro's and con's of radiotherapy and other options of treatment. Others with more experience will pop up to say hi and maybe help via their stories of their journey with breast cancer.

    take care, hope all goes well with the current hospital visit

    Love and positive thoughts and a virtual hug

    HM (Sarah)

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