I Feel Hoodwinked

My first appointment at hospital was on 4 July, where I had an examination, an ultrasound,  2 mammograms and 2 biopsies. Two weeks later I was back for the results.  I was told it was a carcinoma, 2.5cm and there was a lymph node that was positive but it appeared to have no other problem nodes around it.  The doctor said that he would be looking to perform a lumpectomy as well as removing the lymph node and several others surrounding it. He said once that was done, he would want me to have chemo and radiotherapy. I pulled a face and said that I wasn't sure I wanted the last two things. He was lovely and said not to worry because we could discuss that after the lumpectomy. I was then told he wanted me to have an MRI scan to be extra sure and check out other areas and lymph nodes. I had that this week onTuesday and was expecting a call back next week. However, I got a call late yesterday to go in today. 

Now I need to have a CT scan. Why??? He says it's just another precautionary test but I'm not sure. He also gave me a prescription for Letrozole and gave me a surgery date of11 September. When I got home and got my thoughts together I rang the hospital up and spoke to my care nurse. I am angry, upset and I no longer have any trust in them. I feel like I have been tricked into medication that I do not want to take. I told the nurse that I feel like I am given a goal but every time I get close, the ball is kicked away still further. My CT scan is on Tuesday, with another follow up 10 days later. 

I don't see any point anymore. I'm not taking the Letrozole, it looks like a horrible drug with awful side effects and I don't trust that the operation will be when they say. The nurse tried to be nice but she couldn't cope with my questions and tried to fob me off to my mental health team. I am Bipolar. They can't help. I have lost trust now and everyone has to go sometime. This is mine

  • Hi Frankiemo,

    This is complicated.

    You have every right to choose what treatment, if any, you want to undergo but please try to make an informed choice by doing as much research as you can into the pros and cons of each of the options you are offered before you decide.

    I can’t agree with your sentiment about this being your time. This widely held viewpoint seems to me to be a way for many people to avoid making an important decision. A cancer diagnosis can mess with anyone’s mind - I’ve worked in a war zone and I found that far less stressful than coming to terms with my diagnosis.

    I was in the position of making this awful choice 11 years ago. I know now that if I’d chosen to do nothing I would have avoided the side effects of chemo, but I would have died a painful death in 2014. This may seem insensitive but sugar-coating this would be both patronising and dangerous. 

    Do you have anyone you could share your fears face to face with? If not, I’m sure the nurses on here would be happy to talk to you on Monday.

    Best wishes and good luck!
    Dave

  • To be fair Dave, I don't have much to keep me going. I am on my own. I have a cousin nearby who can't be relied on and if I'm ill it will be up to me. I am so fatigued that I don't have the energy to fight anything. I was up for the fight, but since the goalposts started getting moved, I am losing the will. I have heard nothig good about Letrozole and combined with the struggles I have with bipolar, I just don't think I am up to it. Added to that I have nobody to tell about it.

    Thank you so much for your help and taking the time to answer me. You will never know how much your kindness has touched me x

  • Hi Frankiemo,

    A very warm welcome to our forum, although I'm sorry that you've had to join us.

    As Dave rightly says, "this is complicated". Your surgeon obviously thought that your case was straightforward, but possibly with you expressing your doubts about radiotherapy and chemo, he wants to make absolutely certain that nothing has been missed. I was in a similar position to you 15 years ago. I had just lost my Mum to breast cancer and was absolutely terrified of surgery and treatment. However, my mammogram was not as clear as it could have been. Some cancers react in different ways and mine can be difficult to detect on mammogram or ultrasound. My surgeon was therefore keen to ensure that his initial diagnosis was correct, before he proceeded with surgery and treatment, so I had a CT scan and a MRI. I initially had a lumpectomy and removal of six lymph nodes. Fortunately, these were all clear. I took Tamoxifen for the first year year. This didn't work for me, because, almost a year later, I discovered a second cancer in the same breast. 

    I then had a double mastectomy, followed by Letrozole for a further 6½ years. Not everyone gets side-effects with Letrozole - some people just sail through their treatment. Unfortunately, I had a number of side-effects, but I would go through it all again if I had to, because it has, so far, prolonged my life by 15 years. I know how frustrating it is when you think that you have had all the necessary tests, only to be told that you need some more. The doctors don't suggest these additional tests on a whim - they do so in the hope of giving us the best possible chance to overcome this hurdle. They have obviously discovered through the tests that they've already done, that your cancer feeds on the hormone oestrogen. The treatment for this type of cancer is to treat it with hormone therapy, to combat this. It sounds as if you are fortunate that your cancer has been picked up fairly early, and responds to hormone treatment. 

    None of us want a cancer diagnosis, but treatments are continually improving. Doctors can advise you of the best way forward, but the final decision is up to you. Please don't lose faith in your team. These people are experts in their field. They are constrained by costs - so they cannot give you all of the tests to start with, as many people don't need the additional investigations. We feel disappointed when it takes longer than average to get an accurate diagnosis, but if the process of diagnosis is rushed, mistakes can be made.

    A cancer diagnosis certainly messes with the mind and I can understand that you must find this even more difficult being bipolar and having nobody to discuss this with. There are organisations that offer counselling for people touched by cancer. I had to avail of these services, when I was first diagnosed and found them very helpful. Many of these are run by charities like Maggies, or Macmillan. If you have one of these centres near you, it would certainly be worth dropping in. You can also pop in for a chat with other people who have cancer and enjoy a cuppa at the same time. All of these services are free of charge and you might find that you benefit from them, when you're feeling so alone.

    I am not a doctor, but I wonder if it is possible that your fatigue and lack of energy is caused by your cancer? If so, you could well find that this improves after treatment.

    The end decision is yours, but please ensure that you are making it from an informed point of view. You will also find that it helps to talk to others on this forum.

    Please keep in touch and let us know what you decide to do. Remember that we are always here for you.

    Kind regards,

    Jolamine xx

  • No worries.
    Jolamine’s message covers everything I was going to say in a follow up message. 
    One of the reasons I return to this forum is to repay the advice and support I received on here from complete strangers.
    Going through cancer diagnosis and treatment can feel hopeless and lonely - not helped by the constant mantra of “be positive” and “you can fight this”. 

    Try to be assertive with your care team. If you think a lumpectomy alone is what you want please tell them that. You can always change your mind about chemo or hormone therapy at a later date.

    I’m not a doctor but my understanding is that the most important thing is to remove the cancer as soon as possible. 

    A friend was part-diagnosed at the height of the pandemic with very limited access to scanners and test results. He agreed that his oncologist should go in blind, open him up and remove anything that looked vaguely cancerous (like they did before scanners were invented).
    This is what they did and it saved his life because when they eventually tested his excised pancreas it contained a small but fast growing type of cancer. 
    He went onto chemo to eradicate the cancer in his lymph nodes and has since made a full recovery.

    Early diagnosis is important, but early treatment is essential too. 

    Finally, please don’t forget to keep whoever is supporting you with your bipolar treatment aware of the fact you now also have the stress associated with cancer to deal with.

    Good luck!
    Dave