How do you change your Breast care nurse

In my experience it’s a different person every time. And please don’t get put off having a portacath, it’s the best decision I made. Thankfully they were supportive. 

Thank you Coddfish. I'm really keen to have a portacath. Everyone I've spoken to says they are great. And my oncologist said i was to have one. 

I agree I’ve never seen my named breast care nurse since the initial diagnosis! But a word of caution. Portacaths we’re only available on the nhs as of recently and my friend, who is a nurse delivering chemo, warned me not all nurses are trained to use them. I wasn’t given the option so it wasn’t important but it might be worth checking at the hospital. I had a picc line and it was fine Xx 

Portacaths have been routinely used for people needing long term chemo, and for children, for some time, as far as I am aware. They won’t be automatically offered as they are more costly and resource consuming to fit (an hour of surgery in a room equipped with X-rays). In my hospital trust they are available on request provided you have a good reason for having one and can demonstrate an understanding and therefore informed consent to what’s involved in having one fitted. My reason was to continue swimming and running, which was readily accepted. A PICC line wouldn’t have allowed me to swim and could have been a problem with the sweat from running.

Before I could be booked in to have it done, I was interviewed at length over the phone by the surgeon as he had to make a decision on the spot as to whether I was likely to tolerate having to done under local anaesthetic, as there wasn’t time for sedation if my 1st chemo was to go ahead on schedule. Local anaesthetic was fine.

The nurse who ‘docked’ into mine last time said she sees at least one on every shift in our chemo unit. There’s a special device they connect into it on the day, which seems to be a standard item on their equipment trolley. Once that’s in there is a line hanging out of you for the chemo to go in, just the same as with a PICC line.  So it needs a trained person for a couple of minutes, after which any of the staff can deal with you.

It’s utterly brilliant as apart from the small device under the skin, I have no restrictions on what I can do. It also doesn’t need a weekly flush. It will need another small procedure to remove it at the end. I would recommend them to anyone who wants to remain active. My niece, a paediatrician who works with children undergoing chemo, recommended I insisted on one. 

I’m not saying they’re not great and I’m not advising in anyway at all. I can only tell you with absolute certainty that they were not available to nhs breast cancer patients in my trust last summer, they were introduced there 4 months after I started my chemo. In the 7 months of chemo I have had, I’ve not come across a single person with a portacath on my unit regardless types of cancers. My friend is a nurse at Hillingdon, she says she rarely sees them, she administers chemo daily, what can I tell you! It’s great people can have the option and I’m all for it and I wouldn’t cast an opinion any way to guide anyone as my info is only anecdotal but it is what I’ve been told. As an aside I was told not to swim in public pools whilst on chemo too by my oncologist, I couldn’t anyhow as I had the picc in but when we were discussing the benefits of IV chemo vs the picc x

Thank you both. That explains why the nurse was trying to put me off having a portacath, though the fact that my oncologist said i would have one reassures me that it's obviously not unusual in my health care trust (just more expensive, as you say).

I really appreciate your input. It's so good to speak to others in the same situation!.

Just to add, when I was under the surgical team, I did have the same breast care nurse most of the time. I only had others if mine was off for some reason. I guess different trusts have different procedures.

It is and one thing this site has taught me is different trust have different procedures, even being treated at two different hospitals in the same trust I’ve come across different protocols so everyone can give you a different but equally valid view. You have to make the best decision for you, hopefully the views will give you questions to ask. Shame about your nurse, I guess I’d be blunt and email the BC nurse team asking to be changed over, she needs to learn to adapt her approach xx

Always odd how trusts differ so much!  Postcode lottery.