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Palliative care

5 REPLIES 5
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Re: Palliative care

Hi Sunbeam

 

Thanks for posting.

 

It’s understandable you’re feeling worried after being visited by the palliative care team, especially as the doctor didn’t explain her role to you.

 

As you say, stage 2b breast cancer is curable disease.

 

As Jaybro mentions, we would suggest that you discuss this with your breast care nurse. It’s possible that this doctor visited you to advise about pain relief for your shoulders as Oramorph hasn’t helped, but if this was the case, it should have been made clear to you.

 

Immediately after surgery for breast cancer and in the weeks that follow, it’s common to feel some pain and discomfort. Different sensations such as a burning feeling and numbness in the scar area and under the arm can also be experienced.

 

As healing takes place, these effects usually subside; for most people this happens within a few months. However for some, symptoms can persist and we know this can affect quality of life.

 

Ongoing (chronic) or persistent pain can be caused by damage to the nerves, particularly those in the axilla (underarm). There are different ways of controlling this pain.

 

Some people benefit from specialist advice so your doctor may refer you to a pain clinic. And some hospitals run pain management programmes

 

Do call our Helpline if you would like to talk this through or have any further questions. Your call will be confidential and the number is free from UK landlines and all mobile networks.

 

The number is 0808 800 6000 (Text relay prefix 18001).

 

Our opening hours are Monday to Friday 9am - 4pm and 9am -1pm on Saturday. Out of hours you can leave a message and we will call you back when we next open.

 

Best wishes

 

Anne

 

Breast Cancer Now Nurse

 

Please read the Ask Our Nurses disclaimer  Full details on how we collect and use your data can be found in our Privacy Policy

 

This thread will now be closed from further replies. If you have any additional questions or would like to provide feedback, please start a new thread.

 

 

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Re: Palliative care

Hi Jan, its been a long time since I spent hours on Google!  I've moved forward since my diagnosis in Sept 2018.  Even though it's grade 3 etc yada yada my thoughts have settled to a chilled place again.  We all wake up in the morning hoping to climb back into bed at night.  All anyone in the world has is the breath they've just taken.  On the day I went for my herceptin there was a fatal car accident just along from the hospital.  I try to remember that worry takes your today away and tomorrow doesn't give you it back.  I just wondered if this was something being introduced at an earlier stage anywhere else.  Thanks to you both for replying.  

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Re: Palliative care

Hi Sunbeam

 

Your head must be spinning. I wonder if she is conducting research? You are definitely not in the running for palliative care. You are cancer-free, like me, with a higher statistical possibility of it returning. But if it returns, it needn’t be any worse than first time round. And statistics are nonsense: a 40% rate of recurrence (random example) sounds awful. What about the 60% who DON’T ever get it again?? Do keep away from Google and do the sensible thing - ask to speak to your breastcare nurse urgently. This sounds like some very thoughtless, even cruel action with probably the most innocuous explanation.

 

Best of luck, Jan x

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Re: Palliative care

Yes I've left a voicemail for them. The form was the IPOS form.  It makes me angry that health professionals shove these things at us with no or little explanation.  It's a bit like constantly being evaluated like some robot.  What you say can affect so much and can even mean a change in treatment that you would never know about.  Stage 2B is early and as far as I know it's not described anywhere as incurable as doctors will never know if it can be or not.

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Re: Palliative care

Sunbeam.....I don’t have any advice but too ring oncology and check.....there is so much to take in at our appointments.....I have filled in questionnaires during appointments thinking it was about my understanding of my treatment only to realise that my hospital is a teaching hospital and quite often a Dr or student is gathering information for their ‘knowledge bank’ 

Debbie x

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Palliative care

I have stage 2B, post mastectomy and lymph node clearance, chemo and radiotherapy.  Herceptin and letrozole ongoing.  I was prescribed Oramorph for shoulder pain both sides, didn't work.  All scans and blood tests have not shown anything although obviously microscopic cells may still be present.  I was asked to contact my team to discuss pain relief.  During my herceptin a doctor came, gave her first name and her badge said consultant.  I asked her if she was from oncology and she said no but didn't tell me where she was from.  After a chat she left and I was given a questionnaire to complete.  I googled both her and the form and to my surprise both are related to palliative care.  It's now messed with my head.  Stage 2B isn't stage 4, which is the first point I'd expect to encounter palliative care.  I also know end of life care is different again.  It's like saying all the treatment is only ever going to defer a recurrence.  Predict site doesn't say 100% of women will die from it so why has palliative care been involved?  Some sites say its for life threatening illness, which I get, but others say it's for life limiting.  There's a big difference to me!  Any one else had this?