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Staying on Tamoxifen after 5 years

19 REPLIES 19
Evie-S
Community Champion

Re: Staying on Tamoxifen after 5 years

Thank you jtd, it’s always lovely to receive a hug. Xx

jtd
Member

Re: Staying on Tamoxifen after 5 years

Hi Evie-s 

That’s so very kind of you; best wishes and also sending you a big hug xx

Evie-S
Community Champion

Re: Staying on Tamoxifen after 5 years

@jtd - thank you for sharing the information you were given. I can totally understand that you felt weepy - so I also wanted to send you a big hug. Evie xx

jtd
Member

Re: Staying on Tamoxifen after 5 years

Hello again

just an update on my original post. I had my catch up chat today with the BCN . I had my 5th year annual mammogram on Friday ( 7th May ) , but no results available yet.

Based on my original diagnosis:- 2.6 cms IDC , grade 2A ; no node involvement; treatment 15 doses of radiotherapy plus endocrine ( Tamoxifen ) therapy for 5 years .

Usually , grade 3 + , tumour 2 cms + and node involvement would mean staying on tamoxifen for 10 years . With mine being .6 cms over the 2 she said it “ probably “ would be a good idea to stay on it for up to 10 years . Ok . But I’m going to take a break for a month first !
I also mentioned that I occasionally use Estriol gel ; ( prescribed by my GP ) .... she wasn’t too keen on this idea , and said to only use it “ sparingly “ ....

So that’s it. I’ve been discharged ! 5 and a half years after diagnosis. Felt a bit weepy after the phone call today , don’t know why . But I know I e been very lucky , the 3 year mammogram system worked ( for me ) and so for that , I am grateful.

best wishes to everyone xx

Evie-S
Community Champion

Re: Staying on Tamoxifen after 5 years

Seabreeze - that is really good advice, that it’s not an all or nothing decision and we can see how we get on. As you say, 6 years is better than 5 in many cases, even if we don’t get to 10. I’ve got those links saved to read. Thanks, Evie xx

Seabreeze
Member

Re: Staying on Tamoxifen after 5 years

Hi Evie,

You are welcome. I think many of us have a tendency to think the answer is black or white...when actually it's fine to continue Tamoxifen while giving it a bit more thought and just seeing how you go. We pile such pressure onto ourselves sometimes! 

XXX Seabreeze 

PS - The 2 research trials are fairly short to read if anyone is so inclined and can handle a few statistics!   

Evie-S
Community Champion

Re: Staying on Tamoxifen after 5 years

Seabreeze - thank you so much for taking the time to share all that information and your thoughts, that is really helpful - to me and anyone else with the same decision to make. Evie xx

Seabreeze
Member

Re: Staying on Tamoxifen after 5 years

Hi jtd, Warrier Jane, Evie, za and everyone else,

I'm just coming up to 7 year's from diagnosis. A bit like Poppy I found my lump. I was too young to have regular mammograms on the NHS. I had noticed a slight pinching feeling inside my breast, a few times before I found the lump in the precise location of the internal pinching.

Re whether to extend Tamo beyond 5 years:

  • My onc said if the bc had have been in my nodes at the point of diagnosis, she would have advised me I should continue taking it for another 5 years (10 in total) due to the degree of additional protection.
  • However, because bc hadn't spread to my nodes, she said it was up to me, and that I should weigh up the protective benefits against quality of life factors.
  • She did advise against having a break from Tamo (of anything more than a couple of weeks), since all the research is based upon taking it continuously.
  • I asked if there was anywhere I could read about the research results and she gave me the names of the 2 study trials:

The ATLAS trial 

https://www.thelancet.com/journals/lancet/article/PIIS0140-6736(12)61963-1/fulltext   

The aTTom trial 

https://www.cancerresearchuk.org/about-cancer/find-a-clinical-trial/a-trial-stopping-tamoxifen-after...

  • The studies indicated only a small increase in protection by extending Tamo for another 5 years for my stage/grade with no nodal involvement.
  • However - the studies did indicate that some protection was provided beyond the 10 year period, towards 15 years, although the trial hadn't been fully assessed for that length of time.
  • At the end of the day, it was reflecting upon a secondary cancer scare (year 3 after diagnosis) which led me to my decision. A report (following nuclear bone scan) showing large areas on 2 of my ribs, stated highly suspicious of secondary METS. My oncologist took my hand (which is very unlike her) and said she hated giving bad news, I should prepare myself for the worst, that they'd need to check my organs......anyway, after another 2 weeks and more scans... they concluded fractured ribs (which I must have done years before...).  Ironically, in hindsight I think laying a patio singlehanded (and/or fixing a fence singlehanded), may have aggravated it...and my reason for doing the patio - a way of me showing myself I was somehow over the breast cancer!

What made up my mind re whether to extend Tamo?

I thought about how I'd feel if I had another secondary scare (or worse) in the future and had stopped at 5 years. I'd always be wondering... if I hadn't have stopped the Tamo....Bingo, decision made, I'm in it (on it) for the long haul! 

If I'd been on Letrozole, I think how much it had/hadn't been affecting my bones would probably have been a factor in the quality of life v protective benefits debate, primarily due to still being relatively youngish (in bc terms anyway).

Remember, you are not signing in blood that you'll take it for 10 years! 6 years is still better than 5 re protection! 

It's a very personal decision and what's right for you that counts - hoping the above helps your individual debates!

Sorry the above is so long - hopefully the bullets make it easier to digest!

Seabreeze x

 

Za
Member

Re: Staying on Tamoxifen after 5 years

Your story did not go on but is full of inspiration.  

jtd
Member

Re: Staying on Tamoxifen after 5 years

Hello Poppy3 and Evie-s

Poppy3 it’s Great to hear that your 7 years down the line 😊 . I think I felt that the annual mammogram and chat with the BCN was reassuring, but I know that I can still ring them if I have any worries . I have had my mammograms and attended the clinic at the Nightingale Breast Cancer Prevention Centre in Wythenshawe , Manchester , and they have been brilliant . And I hadn’t thought of that , the cancer not showing up on the mammogram, so good point . I do check them but never sure that I’m doing it right lol! 
The one thing that I have learnt since having BC is trying not to worry needlessly : I would hope that I’d pick up if I thought something wasn’t quite right , but life goes on and I do feel very lucky to be here , and not to be ‘defined ‘by my diagnosis , if that makes sense.

I don’t look the same for sure, and my marriage ( our love life ) has definitely suffered , but I have an amazing loving and understanding husband and so I am very lucky in that respect! And we only got married 3 weeks before my diagnosis ( I was 52 ! )

Sorry to ramble on but sending hugs to you both xx

 

 

Evie-S
Community Champion

Re: Staying on Tamoxifen after 5 years

@Poppy3 - thank you for sharing your story, that is a really good tip on how to look at it. I must make a note of that so I don’t forget! Evie xx

Poppy3
Member

Re: Staying on Tamoxifen after 5 years

Hello ladies. Just thought I would share. I am now in my 7th year since bc. When it was five year annual check up that was my last annual mammogram and was told I would now go back into the system of the routine check ups for my age group. It did feel a bit weird to not have that annual reassurance, but my consultant said your body has a very clever way of showing you when things aren't right. Just thought I would add my cancer didn't show up on a mammogram and guess this helped me to come to terms with it..xx

Evie-S
Community Champion

Re: Staying on Tamoxifen after 5 years

@jtd - sorry your appointment has been rescheduled, but at least not too long to wait. That’s also interesting to hear about your “final” mammogram - I also didn’t realise these stopped. I just assumed they would continue. I really hope you get some good advice and feel you can make an informed decision. Very best wishes, Evie xx

jtd
Member

Re: Staying on Tamoxifen after 5 years

Hello Evie-s

Well unfortunately I had a phone call about an hour before my scheduled appointment to say that they’d had an emergency and could not hold my telephone consultation that day.

I received a letter yesterday to say that they had rescheduled it to Monday 10th May . Interestingly, I then received a letter inviting me for my ( final ? ) annual mammogram for the Friday before, 7th May.

I’ll keep you posted as to how I get on .

Thanks so much for asking x

Evie-S
Community Champion

Re: Staying on Tamoxifen after 5 years

@jtd - how did you get on with your appointment? If you are happy to share, I’d also be interested in any information you received. Thanks, Evie xx

jtd
Member

Re: Staying on Tamoxifen after 5 years

Ah thanks for your reply . It’s hard to make a decision isn’t it I just hope that the BCN can point me in the right direction. I believe Lestrole is a very good drug , but does have side effects . I was fine on tamoxifen so very lucky there . Ah well let’s see what Monday’s telephone consultation brings ... 

stay well x

jtd
Member

Re: Staying on Tamoxifen after 5 years

Many thanks for your reply . I’ll see what BCN says on Monday, I think they’ll be taking me off it but I’ll have a good think over the weekend. Stay well x

Evie-S
Community Champion

Re: Staying on Tamoxifen after 5 years

@jtd - I am about a year behind you. I’ve been on Tamoxifen for about 4 years but this autumn my consultant wants to change me to Anastrozole or Letrozole for the rest of the 10 years. My original consultant wanted to keep me on Tamoxifen for the full 10 years. I was pre menopausal when I was diagnosed and now post menopausal. I guess we all have our individual diagnosis and treatment, and consultants also have differing opinions. I had node involvement so maybe that’s why they want 10 years. I would definitely push your consultant/team for advice - it’s not really helpful if they let us decide on something like this, we haven’t read all the latest research or studies. All the best with your decision. Evie xx

Warriorjane
Member

Re: Staying on Tamoxifen after 5 years

I am in the same situation but am on letrozole and have tolerated it quite well apart from the usual joint pains!

jtd
Member

Staying on Tamoxifen after 5 years

Hello

I’m new to the group and this is my first post , although I’ve always visited this forum for reassurance over the last 5 years .

I had IDC grade 2A, lumpectomy , LICAP reconstruction and radiotherapy , diagnosed Nov 2015. No lymph node involvement . Tamoxifen since then .

I’m now 58 and due a telephone consultation with my BCN next week . Not sure when I will get my 5th year annual mammogram but hopefully soon .

my question is , should I continue to take tamoxifen for 10 years ? I’ve read such conflicting information re this . I’ve been ok on it and almost feel as if it’s a “safety net” , particularly as I sometimes use an oestrogen gel for vaginal dryness .

last time I asked the BCN she said it would be my decision as to whether to carry on with it , but I just don’t know !

anyone else been through this particular scenario , and if so , what was your decision ?

thank you xx