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After Care/Check Up/Follow Up appointments

9 REPLIES 9
Chick1
Member

Re: After Care/Check Up/Follow Up appointments

Hello all,

 

Thank you Ann.  Yes when I have the energy to further query I will and then post back.

 

I had a lovely meeting with a lovely Onco nurse yesterday.  I only wanted to make sure I was looking in the right places, however, with my permission obviously, she gave me a full clinical exam as well.

 

 Feel more confident regarding examining lymph areas around clavicle as well as under arm area. 

 

The irony - since January, I have had a mammo, 2 clinical exams by 2 diffierent surgeons (one at the current place, one at the place I am going to), an Oncologist (at the new place) and now the Onco nurse.  4 exams within 4 months - at that rate it would have done to have 4 formal  appointments over a number of years. 

 

Best wishes to all x

ann-m
Community Champion

Re: After Care/Check Up/Follow Up appointments

Hi Chick,
Totally agree with you on telephone follow up if there’s a problem, it doesn’t feel as safe somehow. I know I feel reassured by the yearly follow up & being able to talk to the consultant. I then get the appointment for next year a few days later.
I would be very interested to hear how you get on in researching this.
Wishing you well with it all
ann x
Chick1
Member

Re: After Care/Check Up/Follow Up appointments

Hello all,

 

Thank you all for your responses.  It is interesting to see differences and similarities. 

 

Ann M - I totally agree that it would be more reassuring if there was a consistent approach. 

 

Kitkat23 - I am so sorry to hear about the recurrence.  Credit to you, as well as your GP, for taking action.  How are you feeling now?

 

Nuthatch - I may still have one boob but I totally agree with you.  Hardly relish the idea of strangers groping round my boob and mastectomy scars but I could cope with it at least every 6 months/year just to make sure I had not missed anything. 

 

It difficult knowing what is normal or not sometimes.  To be honest it still pains me to touch the mastectomy areas.  My scars are a mess (in my opinion), I get pains all around, it is tight and I have this disgusting (in my opinion) lumpy bit near my underarm.  Everything is so senstive it may has well have been performed a month ago never mind 10.

 

I am not into  this "just ring us if anything is bothering you" type of "follow up".  That is not follow up in my opinion.  And as to mammos every 2 years  - well I know Authorities do not have to follow NICE guidance but you think they would.  The nurse I spoke to either got it wrong or is way up in front of her knowledge that mammos every year is for DCIS only and NICE guidance has changed.  When I looked on the NICE site, there were no changes. When I have got the energy,  I will  reseach the reasoning for mammos every 2 years for 5 years with that Authority  (so that would be 3 mammos in 7 years if you move to the normal scanning after 5 years which is just one more than what you would get normally in that time!).

 

As if there is not enough to put up with from all the BC and crap "treatment" effects - now I feel I am being short changed on pro-active follow up care when I move.  Another bleeding thing to add on to the "disadvantages of moving" list. 

 

Anyway, I have an appointment booked tomorrow with a BCN nurse (not at the new place) to go through step by step what to look for, where and how - I am especially interested in  the mastectomy side.  I think I already  know but it maybe worth checking. 

 

When I move, If I feel the need for a mammo every year well I suppose I will just pay for it.  If I feel the need to be checked out physically then I will just bleeding ring on a regular basis and arrange an appointment for it.  After all they did say to ring up if anything is bothering you - well it is bothering me.

 

Best Wishes to all

 

Nuthatch
Member

Re: After Care/Check Up/Follow Up appointments

Hi
I’ve had a double mastectomy so no future mammograms for me. I find it worrying that there are no checks, just self referral if I find anything unusual. How do others cope with this? Feel very alone. x
Kitkat23
Member

Re: After Care/Check Up/Follow Up appointments

Hi
i was first diagnosed at 46 in feb 2012 with dcis and had yearly mammogams for 5 years until feb 17. Then told was back in screening programme so could have been potentially 3 years to next one. Then last month went to gp with menopausal symptoms including breast pain which i did not think for one minute was cancer. However As a precaution gp referred me back to breadt clinic and i was found to have a wide spread dcis local recurrence. So all credit to my gp as i was really shocked to rhink it could have gone unknown for up to another 2 years and have progressed.

I had mastectomy yesterday and jyst waiting to go home now!

I know i will get annual mammograms on remaining breast for next 5 years but i think i wil have them privately after that yearly.

X
Citty
Member

Re: After Care/Check Up/Follow Up appointments

I know the NICE guidelines for mammograms is annually for 5 years then back to regular 3 yearly screening mammograms unless you are under 45 when diagnosed in which case you have annual mammograms up to age 50. I'm not sure there is guidance for outpatient follow up, where I am it goes on for 3 years but a friend somewhere else has an open access system where she rings if she needs anything. 

karapace
Member

Re: After Care/Check Up/Follow Up appointments

Down here in Cornwall I have 5 year follow up. First two years are consultant check plus mammogram, next 3 years I can just walk in to the breast care centre and have mammogram each year when due. After that it is back to mammograms in the mobile van which comes to our town every 3 years. I am encouraged to get in touch with centre if I have any concerns or queries and from having done this before found they do respond. They do get you in very quickly (within a week) if you present to gp with symptoms. Anyway feeling pleased today as went to 2 year consult and all looking good. Feeling almost like a slightly older and wiser version of myself now, but very grateful to be here and well again.

Jobey68
Member

Re: After Care/Check Up/Follow Up appointments

Hiya, I'm three years on from diagnosis and had annual checks up and mammograms at the clinic for the first 2 years then discharged out to the national screening program for my further 3 annual mammos with no further check ups. I had a grade 1 diagnosis with a good prognosis and this was their reasoning for me not needing to be seen after 2 years at the clinic.

Ironically my younger sister who is having precautionary mammos but has never had breast cancer will continue going to the clinic for hers!

 

I would have been due my 3rd year mammogram at the end of March but I'm still awaiting an appointment! 

I can't fault any of my treatment but do seem to have been forgotten about now Xx Jo 

ann-m
Community Champion

Re: After Care/Check Up/Follow Up appointments

Hi Chick,

It is all rather confusing & as you say, it would be more reassuring if there was a more consistent approach nationally. Like you, I would have thought NICE guidance should have covered this.

In my case, I was discharged back to the surgeon for 5 year follow-up - no chemo needed, with yearly mammo for 5 years, then I believe, it goes back to 3 yearly, although when discharging me, the oncologist did say I could request yearly mammos after the 5 years.

I also have a yearly appointment with the surgeon, including a full breast examination & update chat. I’ve just had my 2nd yearly appointment.

I also have access to the team if needed, fortunately I’ve been fine & haven’t had to test it.

I believe 5 year follow up, including mammos & surgeon/oncologist is what happens in our area, as others have reported similar.

Best wishes with it all.

ann x

Chick1
Member

After Care/Check Up/Follow Up appointments

Hello all,

 

I am interested in people's experiences of  how follow up/check up appointments are arranged after active treatment for primary breast cancer is completed.  I am not including any adjuvant hormone treatment or bishphosphonate infusions in adjuvant treatment.

 

I am in Scotland at the moment and was told that I would have a 10 year program of annual mammograms . Normally for the first 5 years I would attend clinic to meet with the surgical team for clinic review and mammogram and the second 5 years a letter is sent to attend for mammogram and then a letter sent to you with results.

 

I am in the process of moving to England. I met with the surgeon at the breast clinic there.  Follow up there is a mammogram every two years for five years and no formal appointments of any kind.  I was handed the Breast Cancer Care booklet which includes what to look out for and I was tod you could ring the Breast Care Unit at any time  if concerned about anything.  The end.  I think I have already been discharged before I have fully moved - before fully competing herceptin treatements.

 

The irony, I contaced the BCNs to discuss reasons for such differing arrangements, especially regarding the mammos (as I thought NICE guidance still advised every year).  She said that was ony for DCIS, and then said she would get back to me.  Needless to say she never did (system works really well then!).

 

I do understand that having annual appointments may be stressful for some people but I was looking at it in a different way.  I was looking at it as more of a reassurance appointment or if something was found then it could be dealt with at the time.

 

I would not feel so bad about not having annual checks if I had two breasts!  I have one! So great, there is some formal objective check on the boob side every two years  but it is down to me and my fingertips to sort out whether there is any sign of recurrence on the mastectomy side. 

 

I have no issue with checking myself  - that is how I discovered cancer in the first place.  I just feel a bit more reassured with an objective formal check as well.

 

One question that does need addressing though is the difference in mammogram program.  If it is safe to do these every 2 years then why are a lot of places following up these every year for people?  Just think of the resources the NHS could save.  It begs the question whether this decision/follow up differences are based on clinical need/research or just based on the lack of resources in an area.  Surely they should be based on research/what has worked best in practice.  There must be enough data available from here and around the world.

 

If it comes to it and I want reassurance then I will just book a private appointment at a reputable place and get checked out.  Sure it may cost or even lead to false positives at times.  But in the end, I need to feel that I am doing the best for myself.

 

Best Wishes to all