When do you get a Clinical Nurse Specialist?

From reading people's blogs it seems most people have a CNS, at what stage in the process were you assigned this person.

[Whippit]

I was introduced to a CNS when I had my diagnosis of ovarian cancer. The consultant took me to see her immediately after the appointment. I'm a bit vague about what we talked about but I seem to recall she went over the diagnosis with me and explained the procedure to come. She also asked if I had any questions but I think I was just taking it all in slowly so had no particular questions.

I'm aware there have been funding difficulties for our CNS team at the Velindre and Llandough Hospitals. They are half-funded by Macmillan.

When were you assigned a CNS, and what hospital? It would be helpful to compare notes.

[Hidden]

I haven't been assigned a CNS. That's why I am comparing notes. I haven't had a confirmed diagnosis and am at the stage where I have raised CA125, CT Scan shows complex vascular mass and awaiting surgery. Only after surgery and biopsies will confirmation be available on if I have the dreaded Ovarian Cancer. But I noted that some people at the same stage as me have chatted with there CNS and I would find that useful too.

[Sunfleury-UK]

Hi, I was assigned a Macmillan nurse on referral to the Gynae-oncology surgical team and she has being fabulous and my point of reference and support all along. I had chemo at a different hospital and introduced to a CNS at first appt there. She was much less approachable / available- I suspect this was an individual thing rather than organisational. In both cases the nurses were attached to the consultant.

I think you are absolutely right to try to find who is your point of reference and try to build a relationship with them- so important to be able to talk through your concerns etc.

Best wishes, Sarah

[Hidden]

Hello, I had one right from the beginning and four years later she is still there for me,

I can ring her at anytime to talk about anything, answers all my questions, she has become a

very good friend now.

I hope you find the same where you are, we need someone like this with us all the way.

Best wishes, Trish x

[Hidden]

Hi, I was assigned a CNS after my surgery (while I was still an inmate LOL ) but there was a team of them (so I had more than one) and at that time their role was to answer any questions that I might have had (thus freeing the Oncologist up to more important things)

Moving on then to the chemotherapy regime.. I was asigned a different CNS but it really has taken me years to work out her role (and I am still not sure really what her role is) I feel that the goal posts change almost as much as the weather...while she is meant (so I thought) to be the go between myself and my Oncologist..I am still not sure about this...recently when I had reason to contact her...I was told that this wasn't her job...(but retracted this a few days later) I often feel I am left in "no mans land" so if you have a good CNS make use of her (because all too often they seem to disappear into the woodwork) ...my problem is I have been too independent and have not built up a relationship with her, after five years with a recurrence in the middle I still feel a sense of abandonment (one minute being there for me and the next not) so if you have a good CNS build up a relationship with he....,so if you need her at a later date hopefully she will be there to help you.

Best wishes love x G x

[nandi in reply to Hidden]

My experience is very similar to you Gwyn. When I did ring with questions she was quite curt and seemed to feel I did not need to know anything about my treatment and to just accept it. At my 1st recurrence she made the comment that if they could not give me quantity of life they would now give me quality, I said please do not give me the quality talk yet. This was before any 2nd line treatment. I ended up with a better remission 2nd time round! I have seen her a couple of times since and we are friendly in a distant manner. My Onc. is great and her secretary is wonderful. The CNS at the Marsden where I went for a referral was really excellent.

Best wishes to all

[Hidden in reply to nandi]

Seeing your comment on another topic, I suspect you are treated in the same place as where my wife went.

The CNS there was trained by BA I think, "Have a nice flight" - big grin.

I know they can't get emotionally involved otherwise it would be heartbreaking, best say no more on a public forum.

[nandi in reply to Hidden]

We live in great place! As do you.

Best wishes

[nandi in reply to Hidden]

I have just realised that you posted very sad news about your wife this week. I am so sorry and my thoughts are with you.

Take care of yourself.

[mrshill]

Hi I was assigned my CNS nurse on my first appointment with the Oncologist before I started the chemo, she has been a life saver and a good support with my ongoing problems

[Lily-Anne]

I have two, they were assigned to me at diagnosis, Anita took me off into 'the room' gave me coffee and listening to my incoherent ramblings, my husband and I were both very shocked. She came to see me after my second operation for my hysterectomy and was excellent, but once the other specialist nurse, Clare had been to the oncology appointment with me I never saw or heard from them again, even though the consultant said they were there for me to contact with any questions, I emailed a couple of times and never had any reply. So although I was hugely impressed at first, I think that their time is taken up with new intakes and not consistent help throughout. My cousin who has myeloma and has just had stem cell treatment has never had one.

LA

[wendydee]

Hi

Mine was assigned after I had my op and has been with me all the way. I was one of her first cases of OC and I still meet her at the support group, she is wonderful. You could maybe ask, when you go to your next appointment, at what stage one will be assigned. All the best

Love Wendy xx

[Hidden]

I was assigned a CNS at the 1st meeting I had with the surgeon, I had no exact diagnosis as they couldn't do a biopsy. It happened to be a different surgeon in a different hospital that carried out my op.

I had another CSN when I went to the Cancer Centre and she is fantastic. If I have a problem all I need do is leave a message on her answer machine and she returns my call the same day.

You could always ring your oncs secretary or surgeons sec and they will tell you who she is and how to contact her. They are worth their weight in gold.

best wishes Chris xx

[suse]

I was assigned mine,when i was diagnosed,she came to see me before surgery, and i saw her when having chemo.I still see her when i go for check ups and have her phone number if i have any problems. She has been fantastic and reassured me all the way through.

Best wishes Sue xx

[Hidden]

Hi, I was never assigned a nurse specialist only saw the oncologist and had a different nurse every time for chemo. I found this really hard as I didn't know who to ask for help as my treatment wasn't in my local hospital. Fifteen months after my diagnosis, I mentioned this to our gynae friend and he assigned me his nurse. Now I feel safe knowing I have someone there to help and reassure me if I need it whereas before I felt so alone. She is guiding me through my recurrence, and I am so grateful. Gill xx

[citrine]

I was assigned to my CNS after my husband spoke to the head nurse in cancer services (as he worked at the same hospital) This was after a couple of appointments with the GynaeOnc consultant and a change of the care plan after the results of my CT scan were known.The CNS rang me at home to introduce herself. She was present at my first appointment with the Medical Oncology consultant and she was my first port of call when I needed anything sorted out or clarified. She visited me on the ward after my operation and was always approachable.

However, when I had my fistula repair op last year, I was told she was off sick with stress. Having a CNS is a great idea but it does seem very easy to fall through the cracks.

Love Mary xx

[Hidden in reply to citrine]

Thank you Mary

I have a Pr-Op appointment on Monday with the GynaeOnc where they are going to discuss my surgery/Care plan and agree a date with me to go in to hospital.

If a CNS is not offered I think this would be the perfect opportunity for me to ask about it.

Elaine

[AnnieMae]

I have 2 Nurse Specialists and they are both brilliant. If they are not available they always ring back the same day and will answer any questions or find out info for me. When I've been in hospital they have visited me to see if I need anything. I've never had a MacMillan nurse or spoken to anyone from MacMillan because I get all my support from my Nurses.

Annette x

[JacJac]

I was put in touch with my CNS during diagnosis. I was told that I could speak to a CNS if I wanted too but this was before a definate diagnosis and to be truthful I found it quite scary. After all people dont get a specialist nurse unless there is something seriously wrong so I guess I knew from that point onwards what the diagnosis would be. Anyway I do know how lucky I am to have my CNS she as been a real support to me. JacJac x

[Kelliepop]

I have just been assigned a macmillan cns my worry is I haven't yet been diagnosed it started with an ovarian cyst which the sonographer then said she couldn't tell if it was a cyst so reffered me to have a colcoscapy they specialist then found abnormal cervical cells and called my cyst a mass she took biopsies then sent me for an mri before I left my colcoscapy appointment she assigned the macmillan cns that's the part that has worried me the most as I have not yet been diagnosed has anyone had the same thing I'm only 27 and trying to stay positive but very confused why I have been assigned a macmillan cns without being diagnosed now waiting results of my mri sorry to post on here but it's the only site or post I can find that may hold answers for me

[Sunfleury-UK in reply to Kelliepop]

Hi Kellipop, I'm sorry that you've had cause to find this forum. You'll find lots of support and experience here... Can I suggest (very gently) that you write a new post though as I'm sure you'll get many more replies... This thread is quite old (3 years) so some on here are no longer members. Best wishes, Sx

[Kelliepop in reply to Sunfleury-UK]

thanks for your reply in future hun and now i know how the forum works i will make fresh posts xx

[Yoshbosh in reply to Kelliepop]

Hi Kelliepop,

I was assigned a CNS before my diagnosis. This totally freaked me out as I thought I was as good as being told I had cancer (which, as it turned out, I do). In reality I think it was just so that I had someone to call during a scary time waiting for tests and diagnosis. Unfortunately my CNS hasn't really been much help to me (only steps up when under the gaze of the gynaecologist or oncologist) but I know she's there if I need her.

Keeping everything crossed for you and sending a virtual hug. xx

[Kelliepop in reply to Yoshbosh]

thank you for replying thats all i wanted to know that i wasnt the only one and im sorry about ur diagnosis big hugs hun xx