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[CLKD]

Sad news from a friend's family.  She had cancer treatment 15 years ago and was given Tamoxifen.  Taken initially for 5/6 years years she had a break for 18 months.  During that time she developed more breast disease as well as womb cancer.  She has died this week from tumours in the brain.  The Consultant has told her family that it was most likely Tamoxifen triggered  ……. so much for protection, I am so pleased that I couldn't continue with it. 

Tamoxifen - in case there are cells floating around following surgery which the drug will kill.  However, it apparently carries risks for the womb ……… 

[honeybun]

So sorry to read your very sad news CLKD.

 


Honeybun
X

[Limpy]

So sorry CLKD 

[thorntrees]

Sorry to hear your sad news
Thinking of you and your friends family

Thorntrees

[tiger74]

Sad news for your friend's family.  What a shame that they have been left with the impression that the cancer that killed their relative was triggered by her decision to take a drug which should have helped.

http://www.breastcancercare.org.uk/breast-cancer-information/treating-breast-cancer/hormone%C2%A0therapy/tamoxifen

As you probably know, Tamoxifen will only be prescribed if a breast cancer has receptors within the cell that bind to the hormone oestrogen (known as oestrogen receptor positive or ER+ breast cancer).  Tamoxifen blocks the effects of oestrogen on the receptors. This helps to stop any breast cancer cells from growing.

Tamoxifen - in case there are cells floating around following surgery which the drug will kill.  However, it apparently carries risks for the womb ……… 

No, Tamoxifen is NOT cytotoxic, it does not 'kill' any stray cancer cells that are lurking, that's what chemotherapy drugs are designed to do.  Yes, unfortunately, along with a few other risk factors Tamoxifen does carry a risk of developing endometrial cancer (albeit very rare) and this was something I was told about (verbally and in the Patient Information Leaflet) when it was prescribed.

I have just started taking Tamoxifen after 5 years on an aromatase inhibitor.  I'm scheduled to take Tamoxifen for the next 5 years and certainly intend to continue doing so.  My (informed) choice obviously, to take the advice of my medical team based on latest research findings and recommendations from the scientific community.     

[Dancinggirl]

Good post tiger74 - Like so many drugs, Tamoxifen has risks and benefits.  Just like HRT we all have to make an informed decision and the balance of benefits versus risks needs to be fully understood.
Sadly doctors don't always have the time to explain things fully and, just like HRT, Tamoxifen has its' scary side but it can and does save many lives.  I believe it also offers some protections for bone density as well.

I think the anxiety we often feel around health issues, especially in our 50s when our health starts to really cause issues, can make us so scared about any drug or treatment. My understanding is that if you have an aggressive form of breast cancer it is quite common to get secondary cancer elsewhere in the body and quite often in the womb, so the Tamoxifen may not be totally to blame.  DG x

 

[CLKD]

  .......... I was very ill with the drug.  Was unable to tolerate it.  Whereas my friend didn't have such side-effects.  It has been a very long haul ...... at least when she was well she was very well!  In her 70s but a very young 70 .......... however once the tumours were found in the brain it was difficult as she then had more treatment. 

When my Consultant prescribed Tamoxifen for me he told me that he had never had patients suffer with womb cancers due to it - however, both my friend and I have been aware that that is not strictly the case ....... as I hadn't felt ill during diagnosis nor surgery and the radiation fortunately didn't cause me any problems (other than anxiety causing anxiety) and the drug made me really ill, I stopped taking it.  Because it was a 'just incase' type of drug I didn't see the point in continuing something that might make me ill for the rest of my Life: nor can I understand the '5 year' protocol.

I won't go to the Funeral as it's private .........

[Taz2]

The "five years protocol" is because for cancer treatment to be deemed successful you will have had five years extra life. It's a marker of sorts.

Taz x

[CLKD]

Thanks.  Why 5 though ............ I wasn't called back to see if I was still alive  ..........

[Taz2]

You usually have six month and then yearly check ups for the first five years CLKD and sometimes yearly up to ten years http://www.cancerresearchuk.org/about-cancer/type/breast-cancer/treatment/breast-cancer-follow-up

Taz x

[CLKD]

I had monthly, then 3 monthly, then 6 then 12 .......... then yearly mammograms although my lump was found on palpation.  Both my Consultants retired 3 years in and as no problems were expected I was given advice ......... I know how lucky I have been!

[tiger74]

Hi

I don't know how long the risk of endometrial cancer has been associated with Tamoxifen.  As I recall, CLKD you underwent treatment some years ago so perhaps the relevant studies had not reached their conclusions then and hence this risk has perhaps been stressed more by consultants and appeared in the P.I.L. since then?   

Because it was a 'just incase' type of drug I didn't see the point in continuing something that might make me ill for the rest of my Life: nor can I understand the '5 year' protocol.

Some years ago it was protocol to prescribe Tamoxifen to ER+ breast cancer patients for the rest of their lives, sometimes this was for a great many years.  My oncology team have explained that this is no longer the case as current thinking points to no additional benefit to taking it for more than 5 years (for primary breast cancer). 

In the nearly 6 years since I was diagnosed with breast cancer the protocols for number of years to prescribe different types of endocrine therapy have changed as different studies have concluded; at the moment the recommendation is for 10 years total endocrine treatment and this is usually a combination of Tamoxifen and an Aromatase Inhibitor.   This stresses to me the importance of having one's own medication protocols reviewed properly by a specialist team on a regular basis.  This does not happen automatically.  As patients we need to take responsibility for ensuring this happens.   

As regards follow-up for breast cancer patients.  In my experience this varies widely between different NHS trusts and with different cases.  Like you, CKLD, I was seen frequently, then 3 monthly and then 6 monthly.  Going forward I am to be seen by the consultant on an annual basis with yearly mammograms ad infinitum, I can self-refer via the hospital team should I feel the need at any time.  It very much depends on individual risk factors and pathology of the original cancer.
         
CLKD: I hope that as you are unable to go to the forthcoming funeral you are, in time, able to grieve and gain some sense of closure in whatever way you can.

[CLKD]

   that was lovely.  I consider myself lucky, eventually the times it worried me was in the few days before each follow up appt.  and now it's if that breast is sore/painful/itchy …..

Half a day at a time …….. for reflection.