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2 different oncologist opinions about continuing hormone therapy

4 REPLIES 4
ejc01
Member

Re: 2 different oncologist opinions about continuing hormone therapy

Thanks for your messages.  After a lot of stressful thinking, I've decided to remain on the medication.  I couldn't face having to live with the thought of the cancer returning if I gave up on the meds early.

I had my telephone appointment with the oncologist yesterday and he seemed a bit defensive about his advice to come off the meds but appreciated that I would be too anxious living off them.  So another 4 years left to go....

He then told me that I would no longer need to have any further appointments with him and that my first point of contact should now be the breast care nurses.  I wasn't expecting that!  After 8 years since my original diagnosis, it suddenly feels like I'm on my own.

I felt slightly in shock and nervous though my partner says I should see it as a positive.  But after all this time with medical professionals holding my hand, it feels really weird that no on is going to be checking in on me.

I called the breast care nurses this morning as I feel a bit lost.  She understood what I meant and said that after 5 years, they discharge you back to your GP for anything new but are there for anything related to the hormone therapy.  I'm still going to be having annual mammograms until I reach age 50 and have one next month so she has said to come and have a chat with them afterwards.  That has made me feel a bit better.  To be able to talk to someone face to face about how I'm feeling will really help and because of covid, I haven't been able to do this for 2 years. I'm hoping they will make me feel a little more sure of the future and not worry... well not worry too much anyway!

Hugs to all! xx

Jaybro
Member

Re: 2 different oncologist opinions about continuing hormone therapy

Do you have a breast care nurse still? I’d have asked mine. I’m being treated by St James’s in Leeds. They have so many women passing through their hands, there isn’t much they don’t know. They won’t advise you against the oncologists but they may well be aware of the research, particularly in relation to the specifics of your breast cancer, and guide you towards what you need in order to make an informed decision.

Given your history of recurrence, I’d err on the side of caution.  I wish you all the best xx

Kitkat23
Member

Re: 2 different oncologist opinions about continuing hormone therapy

Hi ejc 

I also had a recurrence ( well , new primary on other breast) whilst on tamoxifen ....had been on it 2 years.....my new primary was grade 2 12mm....I’m now Taking letrozole as I’m post menopausal and have been told will definitely be recommended for 10 years due to my history with tamoxifen..... I couldn’t live with the worry if I Stopped taking them...even though I’m not great on them....so it would be an easy decision for me.....but we are all different with different circumstances.

could you get another opinion from another consultant at your new hospital?

Guest user
Not applicable

Re: 2 different oncologist opinions about continuing hormone therapy

So sorry for your dilemma as if things are not bad enough without two totally different opinions.
All I can say (I am not medical) just someone going through breast cancer treatment - if it was me I would be inclined to stay on the meds. I think if you come off them you will still have massive doubts in the back of your mind as to whether you made the right call and those doubts will eat you alive.
Yes you are worried about staying on the drug non of us like to take long-term drugs, I am on Letrozole for 5 years and then more after if felt needed. Taking them has made life difficult, muscle aches, weight gain, and more... but the other side of the coin is the big C returning, it still might - but at least I will know it's not because I refused or came off the meds.

Do you know why one Oncologist has said continue and the other suggests you come off them?
I know the reasons you state 'why' you want to come off them, are they all your own reasons, or is anyone else making suggestions - sometimes others mean well but they can muddy the waters.

I wish you well in your decision and I hope other members will be able to help you more.

Lots of good wishes

Poppy xx

 

ejc01
Member

2 different oncologist opinions about continuing hormone therapy

Hello, I'm stuck knowing whether to continue with hormone therapy due to 2 different oncologist's opinions.

My first breast cancer was August 2013 when I was 35, grade 3, ER+ and I had a lumpectomy, chemo, rads followed by Tamoxifen.

I then had a recurrence 18 months later in Jan 2015 near to the surgery scar.  This time I had mastectomy with reconstruction, further chemo and then put onto zoladex injections and exemestane to eradicate any oestrogen in my body.  With my surgery they removed 8 lymph nodes with 1 having disease which they said is micrometastasis.  

The original idea was that I would stay on the hormone therapy for 2 years, then it got extended to 5 years and then there was talk of going onto 10 years.

My team in Brighton were brilliant, however I moved up to Yorkshire in 2019 and so have been trying to get used to a new team and therefore a new oncologist.

My initial meeting, which was just after 4 years of being on the treatment, he suggested that I might want to think about coming off the meds after 5 years as they thought that there would be no need to extend beyond that.  I was a bit surprised and a little concerned at the different opinion but didn't worry too much as it was still a little way off.

The following year as I approached the 5 year mark, I started to get anxious and emailed my old oncologist for advice.  He replied to say he strongly recommended I continue with the medication for 10 years especially due to the recurrence whilst I was on Tamoxifen.

My appointment with the new oncologist had to be a phone appointment due to Covid though I had emailed him a copy of the letter from my previous doctor.  He said he hadn't seen it as he gets loads of emails and proceeded again to tell me he thought there was little point in continuing with the medication as he felt that there was little or no difference in the protection it offered after having been on it for 5 years.  He said there would be continued protection from what I had already had and there was research to back this up though when I later asked for details of this, he said there was only research for Tamoxifen.  He did say it was up to me what I wanted to do but I felt very confused afterwards.

The thing is, yes I don't want to keep having injections and taking pills, yes I want to feel more like my old self, yes, I want to stop feeling tired and achy, yes, I want my mental health to recover, yes I want to improve my sex life with my partner, BUT I don't want the cancer to come back either!

It was stressing me so much that I decided to continue having the medication but always in the back of my mind I've thought could I stop it and have a better quality of life?  But I don't know if I could ever get over it, if I stopped my meds and the cancer came back.  Though I know it could come back anyway!

You can see why I'm going round in circles!!  My next telephone appointment with the oncologist is coming up this month and I'm now 6 years on the meds.  I'm already getting anxious about the appointment and what to do.  What do you do, when 2 oncologists who you want to believe are doing the best they can for you, have 2 different opinions?!

Sorry for the long post.  I just don't know where to go with this.

Hope someone can give me some advice!

Hugs to all!

ejc01