62375members
328251posts
cancel
Showing results for 
Search instead for 
Did you mean: 

It’s the knot knowing that makes me feel stupid🙈

5 REPLIES 5
Member

Re: It’s the knot knowing that makes me feel stupid🙈

Hi Aneeebel

 Hope all goes well for you . Thank for this info I will check it out .

 

Nanna J 💕💕

 

Community Champion

Re: It’s the knot knowing that makes me feel stupid🙈

Hi Nanna J

I finished chemo in Jan, surgery in march and then rads in may this year.. I had an oncology appointment in June for a follow up appt... I then had another appt on Wednesday this week!

As it happens I've been having pains in my thigh for a few weeks so my Oncologist has referred me for a bone scan..but had everything been "okay" she would have discharged me... when I said Oh, I thought I would have been coming to see you for a while,  as you would expect, she said No, as your treatment has finished we would discharge you and if you have any concerns you would contact your BCN!!

I'm assuming this is the same protocol for all hospitals! 

Might be worth checking procedure where you are! 

 

💗💗💗

Member

Re: It’s the knot knowing that makes me feel stupid🙈

Hi Jan & Chick1

Thank you both for your reassuring words, I will be ordering and reading that book.  

I am on Tamoxifen and the side effects are manageable most days.   I was like you Jan I just did as I was told and focused on getting though each lot of treatment and protecting my family (and still doing it) by saying I’m fine 🙈🙈.  I also worked throughout, being self employed you don’t have much choice, this has also been a saving grace most of the time but I do feel I have neglected me.  

I have moved area but still having all my follow ups at my original hospital as they where fantastic, but I will find out if I can get help from my local hospital, they where ok about changing dressings etc whilest having chemo so 🤞🤞.   Like you, knowing you have the follow ups for years down the line is so reassuring. I hope your side effects subside and are nothing to worry about .   Sending big Huggs xx💕💕

 

Community Champion

Re: It’s the knot knowing that makes me feel stupid?

Hello Nanna J,

 

 If it helps just say to people  that you are having a Review Appointment with Oncology in October where you will discussing  how you have been getting on with things.  I think I read somewhere that your cancer was oestrogen positive, so good time to review any hormone therapy if you are taking it and how you are managing it.  I am assuming that the appointment is with the Oncologist who oversaw your Chemo/hormone treatment rather than the Radiology side (unless yours was both a Medical and Clinical Oncologist).  You may want to prepare a list of any questions that you wished you had asked before.  If you are on aromatase inhibitor therapy, you may wish to ask if a DEXA scan to check bone density will be undertaken or if you have had one already, you may want to ask who arranges a review one (I think it is usually recommended about 2 years after the initial one).

 

Good advice from Jaybro about the Moving Forward booklet and course.  Here is the link to the BCC page with all the information and links regarding post treatment   https://www.breastcancercare.org.uk/information-support/facing-breast-cancer/living-beyond-breast-ca...   It can be quite difficult sometimes after finishing the more active type treatments when you have had regular appointments, tests and checks and then ........ nothing and you are just left to get on with it.  It can be quite challenging emotionally as well as physically. 

 

The type and occurrence of formal medical reviews and checks may depend upon the area where you are in the UK.  For example, NICE or SIGN guidelines don't need to be adhered to!  For example, there may be mammograms every year,or in some places every 2 years, for 5 years and then back to the routine every 3 years.  There may be a physical appointment every year with the breast clinic for 5 years or beyond as well as to phone the breast care nurses if concerned outwith this time,  or no physical appointment but just to ring the breast care unit if you are concerned and to take it from there.  It can be a much more speedier response ringing the breast clinic directly with any concerns than going through the GP appointment system. There may be no further input or review with Oncology or there may be formal review with an Oncologist and none with the breast clinic.  Of course, it is also important we continue to review ourselves and be alert to any symptoms.  Some breast clinics arrange an appointment with a nurse at the end of active treatment to go through self examination, other symptoms to look out for and lifestyle. 

 

If you want to know how it works in your area, I would advise you ring the breast care nurses and ask how you will be followed up and reviewed, who you should ring if you have concerns, when are you due your review mammogram, what to look out for if you are not sure  etc.

 

Regards to you Nanna J

Chick x

 

Member

Re: It’s the knot knowing that makes me feel stupid🙈

Hi Nanna

 

I deliberately adopted a policy of not knowing from the start. It was the only way I could handle it all. I was diagnosed last September, surgery October and had treatments the same time as you. I couldn't have told you what type of bc I had and I didn’t ask any questions, except about practicalities. When I saw my oncologist this August, I told her I had lots of questions but wanted to enjoy a period of knowing that not only was I cancer-free but I was hospital-free so I’m still living in ignorance - but now I feel it’s time I faced a few facts so I’m seeing my breastcare nurse in a couple of weeks and I’ll go with a list of questions. One thing I do know though is that I’ll continue to be monitored regularly by the oncology team because I was heavily node-positive (19/21). Perhaps your appointment is for the same reason. There’s also the annual breast-screening to look forward to (12 months after surgery)!  Basically, you are cancer-free and cured but still need monitoring to ensure it stays that way.

 

There’s a good book you can get free of charge from this site - Moving Forward (?) - and most hospitals run the Macmillan Moving Forward course which can be very helpful. What next is very much up to you then. I’m still struggling with side effects so I don’t feel free yet and didn’t ring the bell - I’m delighted you did. Don’t worry about not knowing, Enjoy your liberation!

 

Jan 

Member

It’s the knot knowing that makes me feel stupid🙈

Hi All

I was diagnosed with BC October 2018, had surgery November after surgery found I had C in 1 of my 3 nodes removed therefore started Chemotherapy (Fec-T) December, Finished Radiotherapy 13th June 2019.   My last appointment with my oncologist was on the same day and he asked if I had any questions etc I said No - to be honest I was just so excited to be ringing that bell everything went out of my head🙈🙈.  

My question is What happens next ?? I have an appointment with my oncologist 14 October - for what? Then what? People keep asking me and I feel so stupid but I really don’t know what to say . 💕💕💕