Advice please -Have reached 5 year point

[Lilacmoon14]

Hi Aguila,
I hope it gets sorted for you and your mind is put at rest. We all need to have an idea about where we are in our treatment and strangly enough I find it a comfort to know when my next appointment is.
I guess after 5 years you don't want to be left high and dry all of a sudden so its good to either find closure or know you have had your prescription extended for a few more years.
I've only just started on Tamoxifen and have been told to take it for 10 years. So my journey still has a long way to go!!
Hope you have piece of mind soon xx

[Aguila]

Hi Flint, thank you for sharing your feedback, trouble is I have had no final appointment to have this sort of conversation. The 5 year point came and went so I chased to find out when I would be seeing someone and was told that I had no further appointments. The GP has been a star and arranged for me to see the breast care team, likely the oncologist, and I will get some understanding of next steps then. Just waiting for the appointment now. I don’t mind what the decision is as long as someone tells me ‘what next and why’. xx

[Alibobs]

I have only been taking anastrozole for 8 months but I too have been told it will definitely be for 10 years if not longer!! This seems to be the norm now due to new medical research results. I'm happy to continue as long it's proven to keep working!!!💖💖

[Flint]

Hi Aguila

When my 5 years of Letrozole ended I wondered if it might be extended. At my last visit I was seen  by a BC nurse who, when I asked, explained the criteria for extending the treatment longer than 5 years. I was told It depended on several factors, including the infiltration percentage so I knew why my treatment was ending .I was told to discontinue Letrozole from that day. My tumor was the highest state of both estrogen and progesterone receptive BTW.

I hope that by now you have an appointment and are feeling better about the situation. 

[ladybowler]

Aguila

Wow what an amazing GP, gosh I would not like to be the oncologist when they get her letter because I am sure she will not mince her words.

That is great and I am sure that has helped immensely with your stress levels over this.

Helena xxx

[Chick1]

Hello Aguila,

I like the sound of your GP - wish they were all as supportive as that. 

I think we can get told different things which also confuses.  I was told nearly two years ago when diagnosed, that anti oestrogen therapy would be for 5 years and then the Oncology nurse said 10 years.  When I queried this, I was told by Oncology nurse that if the cancer was highly oestrogen positive then they would always recommend10 years.  I am on Anastrazole and to be honest, I will take it for as long as it is working and the side effects don't outweigh the possible benefits so fingers crossed this continues as I nearly have a year under my belt!

Someone I know was on Tamoxifen and as her plan at the time, was going to stop at 5 years..  She found out about the reseach and the  possible benefits of 10 years so GP arranged appointment and Onco had no issues with her continuing for another 5 at least.

Best wishes to you and hope it all works out in the way that you want it too x

[Sue C]

Hi Ladies
The general advice these days is that hormone therapy is for 10 years. I would echo Helena's advice and contact the secretary of the oncologist and book an appointment.
Best wishes
Sue xx

[Aguila]

Hi both, I managed to get an appointment with my GP to discuss my concerns and she was not happy with the advice I had been given. She looked at my records and said she has a letter clearly stating that I will have an appointment with the oncologist at the end of 5 years to discuss meds and that it is not for the GP to decide. She will write a letter to the oncologist and make an appointment for me. She was very understanding and supportive but a bit cross that I was left to feel so helpless.

[ladybowler]

Poppy

Was it your Oncologist who said that to you?  I know mine was quite specific that I would be on it or similar for 10 years, I am 20 months into that time.

Helena xx

[Poppy3]

Hi Ladies. I had a similar situation at my annual check up on Tuesday. I am now in my 4th year so getting nervous that this time next year I will have completed my 5 years. One of questions I had on my list was, will I be on tamoxifen 5 or 10 years. The reply was it's up to you. I know at the end of the day it is our decision on what we do, but some guidence would be helpful. I would just like to know what to do to achieve the best outcome. I dont think thats too much to ask in the circumstances. Hope you find your answers. Xx

[ladybowler]

Aguila

No probs 🙂  sometimes it is easier to see thing when you are looking from the outside in.

Let me know how you get on

Helena xxx

[Aguila]

Thanks Helena, that’s a great shout (don’t know why my brain didn’t think of that!) I’ll give that a try tomorrow

[ladybowler]

Aguila

Oh yes I would, having been through a very stressful week caused by a consultant not being totally clear with me, I can totally relate to your situation and it is always the "little" things that catch us out.

Just a thought have you tried contacting the secretary of your oncologist who first prescribed your meds, it might be worth a try if you have not and explain it all to her and ask if it is possible to have an appointment with the oncologist to get clarity on what happens now.

Sending you hugs

Helena xxx

[Aguila]

Thanks for coming back Helena. Yes, I spoke to the breast care nurse. I was told at the beginning that meds would be for 5 years but that I would see the consultant and they would reassess at the end of that time to decide whether it will be extended to 10. Of all the emotions I’ve been through over the last 5 years, you wouldn’t think this little moment of confusion would feel so stressful, but it does 😔

[ladybowler]

Aguila

I have been on tamoxifen, I can not have letrozole or the like because of my osteoporosis, and I was told I would be on it for 10 years, been on it for about 20 months now.

Can you give your breast care nurse a call and have a word with her to see what she says, or is that who you spoke to?

Helena x

[Aguila]

Should also say WLE, Radiotherapy and Anastrozole, ER+ no chemo

[Aguila]

I have come to the end of treatment at the 5 year point and stupidly thought that meant I would have an appt with the consultant to discuss finishing the Anastrozole and any other questions I may have about moving forward. I’ve had my final mammogram then called the team to find out when my appt would be to see the cancer care team and was told that there won’t be one, I’m all done, that’s it finished. I asked when I should stop taking the Anastrozole and if I need to wean myself off it (I have a couple of packets left) and the answer was that it is up to me. I feel a bit lost to be honest. So, for those of you who have also been through this point, did you just stop? Any side effects from doing so? No appts available with the GP unless urgent. Any advice gratefully received, thank you xx